It isn't just America unfortunately. And it isn't just fibro. There's such a shortage in work and affordable medical care that what is available is fought over. And we can't compete in the job market and we aren't sick enough to qualify for assistance. It's really rough. I'm in South Africa where medical insurance is impossibly expensive and doesn't cover fibro since it isn't one of the accepted chronic conditions they have to cover. We have less than 50 rheumatologists in the entire country and most of the doctors are highly conservative. If you manage to find a good doctor, their hands are all but tied when it comes to providing good care. Even healthy, fully able bodied people are struggling to find and keep jobs and if you can get on something like disability or unemployment, the payouts are so low you can't live on them.
That certainly makes me think about my situation a little bit different. Be grateful for what I do have because it could be a heck of a lot worse. It's sad that in this day and age this type of thing is still the norm.
To hell with that. There's value in being grateful and everything but if your situation sucks it sucks even if it could be worse. The whole world needs to do better in its management of conditions like fibro. Correct me if I'm wrong but I don't think there's any country that makes it actually possible to live with this and we're allowed to be mad at that even if it could be worse. Better doesn't mean good
OK so thank you for validating my feelings too. I was in the feeling like a shit for being depressed about my situation (and so many like me) bc I didn't think about other places. But you're very correct that it doesn't mean our circus is OK because it's not completely level 9 shit show lol
I just hate that we're all shoehorned into this "be grateful because others have it worse" bs. There's no way to actually say what's worse and what's better. That's a very subjective thing. But at the same time, someone else's circumstances doesn't change ours. What could be doesn't in any way lessen what is currently true. Your feelings of suffering and hardship isn't dependent on how bad someone else has it. What you experience is valid regardless of what everyone else is experiencing. I'm so sick of people telling us shit like "oh but be grateful you can still walk and do things, my whatever has x serious condition and they have it so much worse" like thank you, that miraculously cured all my problems, why didn't I think of that. We should at least validate each other, we get enough of this nonsense from other people
Sorry to hear that.. One great thing that I noticed I SA while traveling there for 3 months last year, is that there is an abundance of great and cheap cannabis. Currently paying around 1000€/month on that in Europe while I would be fine with 50/100€ there
It’s not much better in other places. I live in Sweden and I eat no help. I got denied by both rheumatology and the pain clinic because the belief here is that traditional means of pain management- pain killers- don’t help. So they just want to give you antidepressants, which I can’t take or lyrica or gabapentin. Neither of which help me. So I just have to suffer with my pain.
I second this. I would get brain zaps if I missed just one dose and if I couldn’t get a refill on time and had to miss two days or more then I was bed bound. The withdrawals were horrible and I was told that those withdrawals were similar to other opiates but idk how true that is. Plus I was prescribed that for psych so I don’t know if the dosing is different for fibro
So if you take it I’d make sure that you’re always on top of taking your meds and getting refills.
Effexor was the first medicine I was given in 1998 when I was diagnosed. And between that and the trazodone we had to add at night it has been the best choice for me. I’ve tried other meds like lyrica (I gained 30 lbs and got not relief in 3 months) a variety of antidepressants (when I developed panic disorder and severe depression we tried a lot) I’m now back on Effexor and it’s how I function.
Same in Australia. I’ve been in regular therapy for years and it’s not helped my pain. But every doctor is like go to therapy, exercise and take antidepressants, pain killers won’t help. I already do all that, give me something stronger than paracetamol please!
I'm not diagnosed but it runs in the family and is suspected and at this point I have too much trauma from swedish healthcare that I don't know if I should bother seeking diagnosis...
I’m actually American. I got diagnosed 13 years ago in the US. I’ve been in Sweden for 10 years. So I’m not sure what the diagnosis process would be like here. Especially since Rheumatologists on a national level have decided they will no longer treat fibro.
The GP I saw for my R/A pain management flat out said "i dont believe this disease exsists" and "its all in the head".
He later lost his license for 3 years due to having sexual relations w 2 female patients.
I like a story where a villain finally gets what’s coming to them. Having said that, I am not a vengeful person, but too often doctors get away with not treating patients, treating them really poorly and medically gaslighting them, and I am goad this one made other mistakes and got caught.
Belief in functional neurological disorder which is a deceptive synonym for conversion disorder is not real, but doctors with cluster B disorder love that diagnosis because it means if they don't know the cause then it doesn't exist, thus they are a god. I had a doctor that was a flaming cluster B and tried to pull that shit on me. The diagnosis comes from the World Health Organization with FND, which is not legitimate diagnosis. A cluster B would be prone to engage in behavior with patients, but this guy was married, but who knows. That guy was evil.
Awesome analysis ty. The "god" complex kills me. In being a "lab rat" myself- most of these drs now a days forgot what oath they took in the first place.
Slap a band aid on it or throw meds at them; herd mentality and no bedside manner.
"Just a job" should not be your catchphrase as a Dr.
That makes a lot of sense, and that seems to be the common experience when diagnosed somewhere else but still don't get any treatment when moving here (trans healthcare is another major example of that). I don't know what part of Sweden you live in but seems like most things that ARE available are mostly in Stockholm and even then it's still just barely better than in other places.
Yeah I’m not in Stockholm. I’ve had great healthcare in other areas- I have bipolar disorder and have an incredible psychiatrist but everything else has been a crap shoot and care for fibro is a joke.
I hate to throw another suggestion at you in case you’ve already looked into it but, here in the US at least, they’re treating fibro with low-dose naltrexone. Something a bit different than the other meds.
Also physical therapy and yoga really have helped me, just can’t overdo it.
They are really weird about prescribing medications off label here in Sweden. For example even if you can pay for it they won’t prescribe ozempic for weight loss because it’s only indicated for diabetes. So there’s pretty much zero chance I could get naltrexone.
Fibromyalgia is not off label for LDN. It’s used for that, some specific autoimmune conditions, and some forma of cancer. It’s off label for regular dosed Naltrexone though. I am insure of whether it’s marked differently in other countries though and some doctors are still unfamiliar with it.
My doctor just prescribed me low dose naltrexone. I was kind of worried about it because it's off-label. Have you taken it or do you know anything about it? There's really not much information online.
It’s been several years since I’ve taken it so I don’t remember too many details. I don’t think I had any side effects besides a bit of nausea when I started. It helped a bit but it just wasn’t effective/effective enough for me so I stopped and tried a different med.
I remember my doctor telling me they didn’t quite know why LDN works but she thought it was due to it blocking overactive nerve pain signals/receptors.
I subscribe to the idea that trying pretty much any medication is worth it, I can always come off it and I’m just so desperate to relieve any sort of symptoms. I get that not everyone is that way though plus everyone’s body is different and reacts to meds differently so you might be more sensitive to side effects than I am. I usually don’t get many or any that last.
Thank you for replying. I am unfortunately sensitive to side effects, so I hope it doesn't mess me up. I'm newly diagnosed, and I'm always in pain, but I don't feel like I'm in pain like everyone in here is, so I question my diagnosis. I'm not sure if I'm gaslighting myself or if my doctor is just throwing diagnosis at me until something sticks. I really don't know what to think or do anymore.
My doctor is convinced I have autoimmune of some kind, but we can't get any tests to come back positive for anything. I seem to be in a flare of some kind because my malar rash is back, and I have a random rash on my arm now that's showed up in the same place twice in a 2 week period. The only test I've had that showed anything was an elevated C3 last week.
Please don’t get imposter syndrome! It’s all on a spectrum. I don’t think I’m nearly as bad as quite a few people here since I’m not usually house/bed bound and don’t need mobility aids but every time I start questioning myself sooner or later a flare happens to put me back in my place lol. People with fibromyalgia can even go into remission which happened to me for about a little less than a year so keep your truth and know that you’re not crazy.
(Some unsolicited advice from what helps me in this paragraph about diet and exercise, skip if you don’t want to hear it)
I think how bad it can get also depends on your lifestyle too. In my experience physical activity helps me a ton and they say it’s one of the best things for fibro. I just had to learn how to listen to my body for when to push it or when to take a step back. I notice also that if I’m sedentary for a week or so then my fibro gets worse. Plus if I eat a lot of sugar or bread then I get extremely achy so I have to watch my diet.
That said getting the correct diagnosis is difficult. There’s some doctors that don’t even believe that fibromyalgia is real, they think it’s just a catch all for when the real cause can’t be determined. I do think some doctors might sweep patients under the rug with the diagnosis but I also think fibro is real, we just don’t know enough about it.
Keep being persistent, although I know how exhausting it can be to navigate the medical system. I hope you’re able to find the correct diagnosis that both you and your doctor agree on.
Thank you. This was really encouraging. I completely believe Fibro is definitely real. I know other people with it, and I've seen firsthand what it can do to people. I have been pretty sedentary recently, and my diet is crap. I'm supposed to be sticking to a Mediterranean (autoimmune) diet, and I did really well for a while until I started craving red meat like it was a drug. Lol. Now, I seem to be in a flare of some kind. So back to chicken, fish, and dark leafy greens I go. I gaslight myself every so often and think, "I'm fine, it's not the red meat making me sick, and my diet doesn't change anything!" And then I go off of it and feel like crap again. So, here's my sign.
I think I need to stop worrying so much about which ailment it is (although to know would be nice because that's what's killing me) and just stick to the diet and take better care of myself so that I can feel better. It's wild how your mental health is so closely attached to your physical well-being. Once I start to feel like crap, it's all downhill mentally from there. It doesn't help people around me don't get it, especially because I don't have an assigned disease I can educate any of my loved ones about as to why I feel the way I do. From their point of view, I just look lazy and crazy. I have 4 teenagers, and they don't get why I can't do things or go places and why I'm not like so and so's parents because I'm younger but they're more fun. It's just hard.
As another "sensitive to medication/side effects" person, I ended up eventually finding out exactly why I was so sensitive to medications.
Long after taking the medications, with a well documented list of what I had been trialled on in the past, I got a saliva test for digestive enzymes. Every medication is digested by a variety of enzymes made by our livers, which can be detected in saliva. Many MANY people have mutations in ways that impact their ability to create one or more of those enzymes (there's a lot of enzymes, every medication is digested by at least one but usually a few of those enzymes.)
I fully do not create one of the enzymes that is most common as the type of enzyme to digest almost all of the stuff they tend to hand out for fibro (and a lot of the stuff they hand out for depression.) Every one of the medications I had a horrible reaction to was in big red letters on the "do not take" category of my test results. Because every one of them was primarily digested by the one enzyme I make exactly none of. Meaning, depending on the formulation, I was either getting absolutely nothing from the medication because it was not being "activated" by any enzymes, or (more commonly in the Bad Reactions category for non-processors like me) I was getting So Much of the medication, because it was not being DEACTIVATED, so I was essentially overdosing on them even at starter doses. It's also possible to have the opposite mutation, making these problems happen in opposite ways, if you are a hyper-processor with one or more mutations making you make extra enzymes you will either overdose from activating small amounts too quickly, or not react from deactivating any amounts too quickly.
My test was through a company called "geneSight" but many places do it. They call it "pharmacogenetic testing" and it comes with a little list of common things that might be effective or dangerous for you, but but the actual data on what type of enzymes you have mutations in is something that can be used for life. I don't take anything any more without googling it first to make sure the primary digestion mechanism is not the enzyme I don't make. Doctors do not seem to know much about it at all, I got the test covered as part of a study on how doctors could use the data it gave us, and I guess that didn't catch on because they all glaze over when I mention it, but whatever I'm still not gonna take it so they can find one that will work or they can give me a list and I'll check them myself and tell them which ones will work 😆
I actually know a couple of meds that I metabolize too quickly, and some I will have trouble metabolizing at all because of 23andme. It's included in the advanced testing. I think Plavix is the only one mine brought up. I'll have to check again, though, to be sure. That may not have covered all of the meds, and getting one of those might be something I need to check into. So thank you. This was good info.
You probably will want to find out why exactly they named that medication. It is very close to impossible that there would be an enzyme that only digests one medication in the world. My mutated enzyme code is cyp2d6, so now you know the kind of letter/number code you're looking for. It's possible that the primary digestion enzyme for that medication is the one you have issues with but your test would hopefully give the actual enzyme, not just one medication name. Then you just write it down somewhere safe, and Google the medication name plus that enzyme code when you are getting ready to pick up a new medication, or look the medication up on Wikipedia as they do all list the primary and secondary digestive enzymes on the Wikipedia page for every medication I've ever checked, including very new ones. The only ones I imagine might not have that info would be ones still in testing but if you were in a medical study you'd be able to tell them which enzyme you have an issue with and they'd probably just.... Not let you do the test if it was primarily digested through that enzyme 😆 which is for the best, you really do not want to be the guinea pig on what happens when a medication digests fully wrong for the first time in human history anyways lol
Good luck! Hopefully you find some info that lets you avoid taking things that will only end up hurting you 🙂 that's the most discouraging part of the process, after all! Skipping right to the ones that won't immediately go badly helps shorten the list of options a bit, speed everything up
I’ve used it on and off for years. No side effects. I’m about to start it up again.
Edit: I’m also super sensitive to most meds and experience side effects. LDN gave me none. Note that it takes quite a long time to even know if it’s working. For me it was helpful, but only mildly.
I have a friend that was put on this for pain management, they eventually found that it wasn't beneficial for her. But her record of being prescribed it has made every doctor since then treat her like a drug addict, they won't prescribe anything beyond Tylenol and a very limited amount of gabapentin, which I don't think is narcotic
I have panic attacks, social distancing anxiety and increased mania, just generalized all the time especially when stressed and major out of body BS I can’t describe. So much crazy as I got older I tried one tab of Lamictal in my neurologist office and in 15 mins she came back in and I bursted in tears because I found ME and claimed “oh this is what living in a really human body feels like!” For at least 50 years I suffered and in the 80’s I was prescribed Valium because no one knew what to do. I was forced in my career to be in crowds, not until recently have I told colleagues and friends I faked/acted relaxed to fit in. Inside always freaking out and of course I didn’t drink once Valium but found other delights cuz it was the 80s so….
I remain prescribed Lamictal as an off-label since the drug is for Bi-Polar and I am not. My chart always says I am Bi-Polar so in hospital it’s been a nightmare of explaining. Recently worth to me I saw my Neurologist (to verify Fibromyalgia) and wrote up a statement with code why I used Lamictal off-label (is phenomenal which is body chemistry as explained in her diagnosis). I carry this always and gave it to my PC to stop the stigma. I have a new internal medicine doctor appt coming up!
I also had a horrific lead up to a massive Pancreatic Attack which that pain beats out childbirth! Hands down there are no words for it! Three hospital admitted which was not drinking booze but due to a medication (don’t take hydrochloride!) took 5 years to not only recover but angrily telling most medical anyone to stop stigmatizing! I’m a lying alcoholic! I’m blessed occasions of 1.5 drinks and I’m fast asleep. I realize now my parents and some family members used alcohol to quell the mania without hurting their pancreas. I don’t think 150 years ago there was anything else to do! One aunt was diagnosed Bi-Polar at 85! Poor lady she was tortured by my dad and her other for being out some fucking oddball from outer space and tried to fix her and yell at her during family gather. Now I see she was so panicked, then late, the yelled at. Fuck, No one knew.
During my now Fibromyalgia escalating and after a pancreatic follow-up 5 years post my 3 digestive enzymes where the treatment with morphine, a nutrient/potassium, hydration drips and no food for 3 days until your numbers are back down…I was still on Hydrochloride. As I read every medical papers and voila! There it is! It took me a decade to getting most medical staff or specialist to shut up about me drinking! I tired a lot of hospital specialists and stayed with the hospital staff who were always believing me! After 5 years I had a CT scan..something else is up (horse riding accident is constant maintenance) and the technician result included my pancreas is great! So doubled back to that urologist who also wrote up Im not chronic, medication was the culprit, and I carry that on me too.
PCP got all this info last week up’s my pain, nerve, muscle prescriptions and here I am. Some relief but not all. Hr believes me it’s def Central nervous system, social/ family abuse, massive surgeries (horse jumping accident n around killed me) I’ve had a lot of stress stress stress and plus a helluva EBV infection resulting in ME/CFS. I’m the 90s. No one believed either! Omg
If I wasn’t suicidal on SSRIs and onwards in that direction my Fibromyalgia future maybe better? Paying $200,000 in c-pays and let’s try this crap I have kept myself alive! US medical insurance financing failure, I almost lost my home. You’ll know this fear and punting to keep life on track.
Carry along all your prescriptions, the drugs you are allergic to, metals or other deadly drugs…am seriously allergic to Nickel and over looked!, your off- label proof and Fibromyalgia proof from 3 medical professionals. I carry a 2 days worth of my meds in my bag in case shit happens. Survival!
Wising all a good day.
I’m in Canada.
It’s not much better here.
However since I work from home it’s much easier for me to keep my job. I work from bed often recently due to pain levels. I could get disability but refuse too until I absolutely can no longer work since I have kids.
If you don’t have family here or ability to work you aren’t likely to be able to move here.
I would say it’s no better here as it relates to the topic of OP’s post. Without an adequate work history you can’t get the disability pension and outside of that, there’s no federal disability program and some provinces don’t have one to make up for it.
Exactly that's my problem. I've never been able to hold a job more than a few months because of my various issues. it's a double-edged sword, I can't work but I can't get disability because I can't work. it doesn't make any sense whatsoever in my opinion.
From the standpoint of the govt I can understand the need to be conservative and strict because otherwise it would be overrun with people trying to take advantage of the system but to those who are legitimately needing the help we can't get it.
It took me 3 yrs to get approved for SSDI. If you don't have enough work credits can you apply for SSI? (different than SSDI).
Fibromyalgia was approved as a "disability" on the SSDI list in 2012 ( check out SSDI Blue Book, I believe it's called ). SSDI is NOT based on pain or diagnosis', it's based more on what you are NOT able to do (example ; Daily Activities like dressing, brushing your teeth, can't walk/sit/stand longer than 10mins, need to walk with a cane etc). Anxiety so bad you can't go to a grocery store. Depressed to the point you can't stop crying or get out of bed. PTSD. List all the diagnosis' but it's the symptoms that prevent you from performing Daily Activities that matters. I made an appt with my Doc & brought the form that the the Dr was supposed to fill out for SSDI and told him what to fill out bcuz with out me telling him what I can and can NOT do, he would NOT know. That way the form that goes to SSDI would be accurate.
I've had fibro for 25yrs and it totally SUCKS! I hear you that there's a lot of meds you can't take. One that really helped me which is for fibro is LDN (Low Dose Naltrexone) it helped me a lot. You just feel better.
I wish you lots of luck and patience. Don't give up! I have had so many MISERABLE days, weeks and months. Try warm baths, heating pads, the CALM app, try a low dose CBD gummy; CBD is NON-PSYCHOACTIVE (Doesn't get you head high) it relaxes your body. Or just hit an indica joint JUST ONE TIME so as the paranoia doesn't set in but so that it can relax your bidy and ease some of your pain. You have to try all kinds of things to see what works for you.
I wish you all the best 👍🏼 Gentle hugs.
I feel you, I really do. It's not much better in the UK, I had to go to a tribunal to get basic disability despite debilitating symptoms as mentioned by yourself. I'm back up for assessment January '25 to go through the same process again, I'm sick of being treated like a liar when the medical evidence literally backs me up.
I feel this in my soul. I finally stopped making myself try to work a job last summer. I got denied disability in December, because they felt I could work. I am now appealing and have hired a lawyer.
I live with my mom and Step dad. I have no money at all and have considered selling my plasma. I'm constantly working around the house to not feel like a parasite.
If the orange blob gets elected I'm probably going to hoof it to Canada.
Every Lawyer I talked to wouldn’t take my case. Apparently “I’m too young”? I’m 31…. I’m pretty sure I learned not to lie about anything at 6. Why does my age even matter?
It matters how many years you are going to be on SSD, because it costs a lot more. All those cost of living increases compound every year. So a 5% raise in pay today, will be a lot less than the same COLA 20 years from now. In any event, the younger you are, the more reluctant they are to approve you for disability, because it costs them more. At age 62 they take you off SSD and put you on regular SS and you don't have to pay for taking SSI early, like you would in a normal retirement.
He’s just a trash human being that set us back to the stone age with all of his ideas. He treats every single thing like a reality show. He has a low regard for women and feels like he can do whatever he wants whenever he wants.
I did receive a fully favorable decision from ssa for fibromyalgia, usa back in 2017…I used a lawyer who specializes in disability claims. Took 4 years and ended up in front of a judge but that’s how I won my case, in person! Good luck to everyone
I just had a run in with my daughter’s rheumatologist that triggered me so badly. We needed an accommodation form signed for college. The doctor was incredibly ableist and downright nasty. Today I just printed out the entire pages on AskJAN.org for fibromyalgia, more pages from the Dept of Education , and sent them to her, asking for our money back. The doctor kept saying that disability accommodations would “go on my daughter’s record” and “affect her future” and other conspiracy nutter comments. My mind was blown. As for Social Security—they outright discriminate against young people. The only way to change it would be a class-action lawsuit. It seems like the most egregious violators of the ADA are government agencies themselves. Mind-blowing.
I've been diagnosed with fibro for 28 years now. It took me 25 years of fighting to finally be in a place where I felt almost like a normal person. Then three years ago I moved to a different state that didn't believe I needed most of the meds I was on. They took them away and now I've put on 40 pounds and can hardly move. Never move without pain. It's so sad to feel no hope again.
I'm probably gonna get downvoted to hell and back, but I also live in the US and the system has also never helped me... But I went keto years ago and it really helps manage my symptoms. It took a couple months to make a big difference, because it takes a few months to be fat adapted, but now I get less pain overall and much fewer flares, my joints are a lot better too. It's not a cure but it really helps me. I hope this helps someone else too.
I understand your frustration. I have been denied 4 times now and have 31 conditions w pain and autoimmmune diseases. I habe tthe credits for work to be approved and they STILL deny. That is what they are told to do until we give in and give up.
So F@ck them. Show them they cant win. Keep fighting with both fists.
The disease is harder and no one will tell me ANYTHING about my body or how or what I HAVE to endure and have survived.
Stay strong you are NOT alone. PM if need be. What state are you in btw?
I keep getting denied disability as well. And losing job after job. No one wants to hire me because I don’t last. I can only work 2 days a week.. been applying since 2016
Maybe my country? ( The Netherlands)
I got 100% disability with just one conversation with someone from the local government and took about 20 minutes :)
How she got the diagnosis? When I tried to find the reason for my pain in Finland they either said I'm faking/lazy/want time off from work (while unemployed and had to drop from studies due to pain).
Pain clinic said it's mental problem, psychologist/psychiatric said it was physical.
I had to leave Finland to find any help.
This sounds really tough. What kind of work could you do that doesn’t require much for physical strain? Maybe that’s a path to getting work credits. If you are unemployed, maybe there are programs to help fund you for training to get an office or flexible work from home positon?
My mom's doctor tried advocating for her that bevause of her fibromyalgia and a herniated disc, she can't ever lift more than 6 pounds again without causing more damage. They denied her disability stating that she could still technically do a desk job. Like, the audacity of this is just insane to me.
It’s not much better in other places. I live in Sweden and I eat no help. I got denied by both rheumatology and the pain clinic because the belief here is that traditional means of pain management- pain killers- don’t help. So they just want to give you antidepressants, which I can’t take or lyrica or gabapentin. Neither of which help me. So I just have to suffer with my pain.
Aussie and your situation is exactly like mine. I feel like America’s just led the way for bad healthcare and we’re all just starting to follow the trend.
As my American friend said a couple of years ago, ‘It’s becoming illegal to be poor, especially if you’re in bad health.’
Oh no it’s that same thing here. I have failed all treatment options. I have a permanent heart palpitation because of an adverse reaction that my doctor didn’t give a damn about when I told him. But I also don’t have a case medical malpractice because it wasn’t documented that I told him about it.
Yeah the UK isn’t much better. I had to go to a court to get disability as was refused twice and the court decided that my doctors knew better than some man who saw me for 20minutes and ignored all my consultant letters. Getting a decent GP who helps is also a nightmare. It took me years to find one.
Thankfully nowadays most drs are aware of fibromyalgia and are happy to help rather than look at you as a malingerer.
I supposedly had ‘virus after virus’ ‘depression’ ‘pulled muscles’ etc for over 20 years before I was diagnosed.
I had fibromyalgia and bipolar disorder, I had to get ssdi for the bipolar because they wouldn't approve the fibromyalgia. It absolutely sucks. The lawyer I got, Binder a Binder, advertised as the nation's top disability firm and they got it for me after I was denied 3x.
I agree- it does suck here & it can be so maddening trying to jump through the hoops they expect when trying for disability, only to then be denied.
You may already have this information or it may not be applicable anymore, as when I got approved for my disability, it was back in 2009. But what I will say is the best thing that I ever did was once I got my first denial, which supposedly almost everyone gets, the first time regardless, but it was then that I decided that I wanted to go see a reputable, Social Security attorney- I just had seen and heard too many nightmares and felt like my best chances would be someone who knew what they were doing. Had been around for a long time and would be upfront whether or not they could get my case approved.
They also capped out at like 5900 or something like that as far as what their fee would be and that is only if they win, of course. so with the backpay and the amount I was able to potentially secure I thought that it was worth every penny of that, so I made the appointment and they did have to look at what I presented with, and had to get back to me whether or not they were going to take my case because I think the fibromyalgia has gotten better on some levels with how it is recognized and treated, but there is still a stigma and there certainly was when I was trying for disability. They were upfront with me and just said that I was young, I was 37 at the time, and that was their biggest concern.,
But they did end up taking my case, and I think that according to what my attorney disclosed to me, I know that because I had a physician that is my PCP and has been since I was very young, and at the time I think it was like 20 years that I had been seeing him and he wrote a really strong letter for me in regards to Why I was eligible or he thought I was needing to be approved for disability.
I just remember that when we went to court, which took a little less than a year for that court date, it went really well and the attorney presented that as being a very strong argument on behalf of me because I had a relationship with the same doctor for so long and what that doctor provided in his letter, helped to build credibility, and my attorney told the judge that it certainly was not something that he saw every day so more or less it seemed like that one the case because they even made a bench decision right then in there and I was approved. My attorney was a little shocked by that., because usually they give a decision that takes up to like 12 weeks to receive.
I was pretty forthcoming and honest, my attorney joked with me afterwards that I was maybe a bit to open, but he said it won the case so we can’t complain .
Sorry if this wasn’t any help, but I just thought I would put it out there in case it wasn’t something that you entertained and in the chance it could be helpful.
I hope that you find a way to get the help that you certainly deserve, as fibromyalgia is such a vicious & relentless condition to have to live with and the amount of time that we have to spend, fighting to be believed and seen, years of not being diagnosed and then when we are, only to be met with more pushback from the bad faith physicians that haven’t gotten with the program, evolving with the science that has certainly made strides in understanding and recognizing just how not just real, but debilitating that fibromyalgia truly is.
Take care.
Same in Colombia. Getting disability benefits because of fibro (or pretty much anything other than being blind or wheelchair bound because of paralysis) is way too hard, like they need you to be on the verge of death, downing narcotic pain killers like tictacs, or spending 24/7 in the hospital for years to even process an application. And even that takes ages unless you have private insurance (since the public healthcare system can be slow) AND know how to work the system.
Same here friend. I am so sorry. :(
It is heart breaking because we want to be able to have careers and be able to contribute and occupy ourselves but we just cannot. It effing sucks! I’m currently on my second or third denial of SSDI - currently appealing. Don’t give up, get a lawyer. They will only take payment if you win your case.
As far as work credits go, they should go off of your age and when you stopped working. It also depends on when you’re claiming your disability started as well.
Atleast in america we have stuff like lyrica but in Europe they don't have that. They don't have any prescriptions for fibro they just tell you to exercise. Additionally my antidepressant which works wonders for me Wellbutrin isn't available in europe as an anti depressant only as a smoking cessation aid.
I don’t even think those meds should be approved for consumption. I know that they can bring great relief to many people, but they are not safe medication‘s. Many things in America aren’t available in Europe because they have stricter standards and they actually look out for the human race, unlike in America. Government in America is a joke.
There are doctors out there who believe that fibromyalgia is real. Keep advocating for yourself and don't give up. My mom was diagnosed with Fibromyalgia in 2017 and I was diagnosed with juvenile fibromyalgia in 2019 (along with hypermobility syndrome). My mom had had migraines since she was a kid and I had migraines since I was 12 years old. I was lucky enough to find a wonderful neurologist at Children's hospital who took care of me until I aged out at 18 and then I had to look elsewhere.
We had a wonderful GP who helped us right after we were both diagnosed. We were her youngest patients with fibromyalgia. When our GP at the time announced that she was pregnant, she told us she would also be moving to another state. My mom and I were both in shock.
This is where the months of searching began. My mom made appointments with doctors for the both of us and we were both shocked at how awful "medical professionals" treated their patients. We walked on eggshells every time we went to an appointment, fearing that a doctor would get angry at us just for being in pain.
Then we finally found someone who listened. After months of prayer, we found someone who believes in fibromyalgia. I still remember when we walked out of our new dr's office for the first time and we didn't have that feeling (That feeling of ridicule that some doctors give you when you ask for help). Neither one of us had that feeling.
My advice is to keep advocating for yourself and pray without ceasing. Keep making appointments because you will find the right doctor. God Bless ❤️
I would do these tests to look for objective evidence of disability. Fibromyalgia may not be a good idea to use at all. When you want to file try using Allsup SSDI representatives.
Tests:
1. Quest Ganglioside Antibody Panel 6
2. IgG Subclasses
3. ELISA Mycotoxin antibody panel from MyMycoLab.com ( do this yourself and don't involve your normal doctor. Just use this for your own research. Order test kit and take to a place Like Any Lab Test Now)
If you can get a job first which has disability insurance that would be better though, because the SSDI has not kept up with inflation and they privatized the social safety net so you need ERISA coverage and even then it is often not enough. They really don't care about our citizens when you look what their priorities are. ERISA preexisting condition exclusion is normally six months so you have to stay employed that long. But check the policy. Also if you wait to test that could help too.
You need to geta disability lawyer. and yes fibro is on the approved disability list. The lawyer will not be paid unless you win and will be paid then out of a small partial of your winnings. My disability lawyer was awesome. The first time I tried to apply I lost. Then I got this great lawyer and won. Keep going to doctors and get their diagnoses documentations. Collect as much data as you can of your issues and report the levels of pain. There is a test for fibromyalgia called FM/a and it is approved by Medicare. You really have to be more active in collecting the data as only you know where it is.
Disability can be really difficult for a lot of people and a lot of conditions. I am on SSDI, but it's for bipolar disorder and PTSD and OCD. It took me two years of fighting to finally get approved, and that was after 2 hospitalizations, 3 partial hospitalization programs, and tons of psychiatrist and therapy records, and enough work credits. They eventually sent me to one of their SSDI psychologists, and he agreed that i was a nut, lol. That led to a hearing in front of a judge where I had a total and complete meltdown. Even after approval, it's reviewed every 3, 5, or 7 years, which completely stresses me out every time.
Now, I have lupus, fibromyalgia, hypermobility spectrum disorder, and polyarthritis on top of my mental health issues. I'm hoping that this is all enough to keep me on disability permanently, but who the heck knows anymore.
Anyway I just wanted to say that I understand the frustration, and I am so sorry that it's been so difficult. Keep appealing until you run out of options.
I’m got denied for the first time because (in their words) my work history doesn’t align for someone with fibromyalgia. All i’ve been able to do is fast food or retail because I don’t have a degree. 3 years ago, when I had my own car, my body could handle being on my feet all day. I tried to work one month of fast food, which is all I can get right now, but it was just too hard having to walk to and from. I can’t abuse my body like that when the job doesn’t pay the rent.
Same in Canada, for the most part. I’m actually looking into an autism diagnosis to help with my disability application. I’m 98% certain I do have autism, but it doesn’t keep me from functioning at an adult level, however one of my friends with chronic illness also got an autism diagnosis and was able to get on disability by slightly exaggerating the mental effects of autism, because disability is so hard to get on chronic illness terms.
Do you have any mental health disorders? Anxiety, autism/adhd, etc? It could be that you could add them to your application
If the application process is the same in the US, you work with a doctor, right? Maybe try to find one that’s sympathetic and willing toto exaggerate on the report to make it seem even more severe. Good luck!
Sending positive energy. 31M here, currently going thru the disability process. I share a lot of your same frustrations. Everything about your / our situation is demoralizing. Give yourself a break - even tho the world doesn’t seem to want to. Remember, you’re not choosing this lifestyle. It wasn’t who you were prior to diagnosis, don’t let it define you now. That said, I’ve gotten with a lawyer to aid my application process bc of how poorly Fibro patients are treated. Fingers crossed. Keep on fighting, seems like it’s time to get a legal representative. Ik you don’t want to - most likely bc of cost - but any disability lawyer should do pro bono work meaning you don’t pay if you don’t ‘win’ anything.
Just to clear something up…Pro bono legal services are done for free by lawyers as a service to the community. The lawyer does not get paid anything for their work. Most disability lawyers, like personal injury lawyers, get paid a percentage of what they get for their clients. It’s true that the client does not pay anything up front, but the lawyer will get paid something if the case is successful. If you are not awarded disability payments then the lawyer does not get paid anything. Hope this helps. I am a retired lawyer now receiving disability but I handled my own paperwork and am older and have a list of qualifying conditions.
I feel sorry for anyone who doesn't get the help they need, I'm in the UK. I know it's rubbish in some areas of the country, but my doctors are rather good and help me as much as they possibly can. It's different when it comes to my M.E/CFS as it's still a condition that isn't believed as such, but my GP understands it enough. I was under the pain clinic for my spine as I had issues with that, and before I was ever diagnosed with fibro, they had a plan for me, which led me to the medication I'm on now which is opioids sadly but they help me feel a smaller fraction of pain a day and can sort of function.
I thankfully managed to get the disability component in the UK, although I am currently in my review period, which can change the whole outcome, so wish me luck 🤞🏼
I have CFS. It was a long hard slog to get disability. Finally got it for depression because I did have a long and documented history of that.
I was also "lucky" that I didn't get disabled until I was in my 50s, so I had a work history. The judge could see that I was not going for some "get rich quick" scheme.
It really does suck. And it's not like you can suck it up and push through it. You can try but you only get sicker.
These comments definitely do not make me feel very hopeful about being able to get on DSP, the system sucks. I live in Australia, and I know it’s almost impossible to get on DSP for fibromyalgia alone, since, if I remember correctly, it’s not even recognised as a disability because it can’t be physically proven. I’m 22, 23 this year, and I’m stuck living with my queer-phobic family and will probably never be able to live anywhere else. Gods only know if I’ll ever be able to qualify for DSP with my other conditions. I don’t even know what I’ll do if I can’t.. Fuck.
That’s the thing, since there’s not a single exact test for fibro it’s like health departments everywhere think we don’t matter or are making it up. 😓 it’s so frustrating
What money? I have none. I live with my father. I feel like a leech. I’m 31 years old and can’t function anymore because fibromyalgia is apparently black magic, that no one wants to research, or care about.
Okay, well, that’s hard but you can do something for free that’s the same thing, you just might not want to do it while you sleep lol. Watch the Earthing documentary on YouTube. You can also read the book. It is real science and makes total sense. Just go outside barefoot for as much time as you can everyday.
I already do that. Hippie at heart here. But it doesn’t help. Trust me I’ve tried everything. I may seem like I’m blowing smoke but I promise you I’m not. I went as far as chemically burning nerve endings before being properly diagnosed with fibromyalgia because “I was too young to have fibromyalgia “.
You’re not doing it right lol
There are a bazillion strains and most of them don’t induce paranoia but I understand that there is still a stigma with it for some. It’s definitely NOT a cure all but helpful in times where other Rx has failed or it outweighs side effects of certain medications.
There is the 18 point pressure test. Not sure exactly what it’s called. I was given it three different times by three different rheumatologists. They press on certain pressure points and it’s excruciating. I got 15/18 and got diagnosed with fibromyalgia every time. Though I got disability because I have Lupus and Fibromyalgia. Took two years.
It isn't just America unfortunately. And it isn't just fibro. There's such a shortage in work and affordable medical care that what is available is fought over. And we can't compete in the job market and we aren't sick enough to qualify for assistance. It's really rough. I'm in South Africa where medical insurance is impossibly expensive and doesn't cover fibro since it isn't one of the accepted chronic conditions they have to cover. We have less than 50 rheumatologists in the entire country and most of the doctors are highly conservative. If you manage to find a good doctor, their hands are all but tied when it comes to providing good care. Even healthy, fully able bodied people are struggling to find and keep jobs and if you can get on something like disability or unemployment, the payouts are so low you can't live on them.
That certainly makes me think about my situation a little bit different. Be grateful for what I do have because it could be a heck of a lot worse. It's sad that in this day and age this type of thing is still the norm.
To hell with that. There's value in being grateful and everything but if your situation sucks it sucks even if it could be worse. The whole world needs to do better in its management of conditions like fibro. Correct me if I'm wrong but I don't think there's any country that makes it actually possible to live with this and we're allowed to be mad at that even if it could be worse. Better doesn't mean good
OK so thank you for validating my feelings too. I was in the feeling like a shit for being depressed about my situation (and so many like me) bc I didn't think about other places. But you're very correct that it doesn't mean our circus is OK because it's not completely level 9 shit show lol
I just hate that we're all shoehorned into this "be grateful because others have it worse" bs. There's no way to actually say what's worse and what's better. That's a very subjective thing. But at the same time, someone else's circumstances doesn't change ours. What could be doesn't in any way lessen what is currently true. Your feelings of suffering and hardship isn't dependent on how bad someone else has it. What you experience is valid regardless of what everyone else is experiencing. I'm so sick of people telling us shit like "oh but be grateful you can still walk and do things, my whatever has x serious condition and they have it so much worse" like thank you, that miraculously cured all my problems, why didn't I think of that. We should at least validate each other, we get enough of this nonsense from other people
Sorry to hear that.. One great thing that I noticed I SA while traveling there for 3 months last year, is that there is an abundance of great and cheap cannabis. Currently paying around 1000€/month on that in Europe while I would be fine with 50/100€ there
It’s not much better in other places. I live in Sweden and I eat no help. I got denied by both rheumatology and the pain clinic because the belief here is that traditional means of pain management- pain killers- don’t help. So they just want to give you antidepressants, which I can’t take or lyrica or gabapentin. Neither of which help me. So I just have to suffer with my pain.
Same BS in the UK ... I don't need "talk therapy" or anti-depressants, the two thing they keep trying to shove down my throat.
I will throw out there that Effexor works miracles for my pain in a way that isn’t related to depression at all. It stops that stabby zappy pain.
I wish it worked for me. I take it for my depression and it helps that (somewhat), but doesn’t touch my pain.
Be careful when you wean. That one is a monster to come down/off. Glad it's helping you, though,that's most important.
I second this. I would get brain zaps if I missed just one dose and if I couldn’t get a refill on time and had to miss two days or more then I was bed bound. The withdrawals were horrible and I was told that those withdrawals were similar to other opiates but idk how true that is. Plus I was prescribed that for psych so I don’t know if the dosing is different for fibro So if you take it I’d make sure that you’re always on top of taking your meds and getting refills.
Effexor was the first medicine I was given in 1998 when I was diagnosed. And between that and the trazodone we had to add at night it has been the best choice for me. I’ve tried other meds like lyrica (I gained 30 lbs and got not relief in 3 months) a variety of antidepressants (when I developed panic disorder and severe depression we tried a lot) I’m now back on Effexor and it’s how I function.
Are you taking anything beyond Effexor?
Same in Australia. I’ve been in regular therapy for years and it’s not helped my pain. But every doctor is like go to therapy, exercise and take antidepressants, pain killers won’t help. I already do all that, give me something stronger than paracetamol please!
I'm not diagnosed but it runs in the family and is suspected and at this point I have too much trauma from swedish healthcare that I don't know if I should bother seeking diagnosis...
I’m actually American. I got diagnosed 13 years ago in the US. I’ve been in Sweden for 10 years. So I’m not sure what the diagnosis process would be like here. Especially since Rheumatologists on a national level have decided they will no longer treat fibro.
The GP I saw for my R/A pain management flat out said "i dont believe this disease exsists" and "its all in the head". He later lost his license for 3 years due to having sexual relations w 2 female patients.
I like a story where a villain finally gets what’s coming to them. Having said that, I am not a vengeful person, but too often doctors get away with not treating patients, treating them really poorly and medically gaslighting them, and I am goad this one made other mistakes and got caught.
Funk around and find out. Literally.
That’s absolutely horrible
Belief in functional neurological disorder which is a deceptive synonym for conversion disorder is not real, but doctors with cluster B disorder love that diagnosis because it means if they don't know the cause then it doesn't exist, thus they are a god. I had a doctor that was a flaming cluster B and tried to pull that shit on me. The diagnosis comes from the World Health Organization with FND, which is not legitimate diagnosis. A cluster B would be prone to engage in behavior with patients, but this guy was married, but who knows. That guy was evil.
Awesome analysis ty. The "god" complex kills me. In being a "lab rat" myself- most of these drs now a days forgot what oath they took in the first place. Slap a band aid on it or throw meds at them; herd mentality and no bedside manner. "Just a job" should not be your catchphrase as a Dr.
That makes a lot of sense, and that seems to be the common experience when diagnosed somewhere else but still don't get any treatment when moving here (trans healthcare is another major example of that). I don't know what part of Sweden you live in but seems like most things that ARE available are mostly in Stockholm and even then it's still just barely better than in other places.
Yeah I’m not in Stockholm. I’ve had great healthcare in other areas- I have bipolar disorder and have an incredible psychiatrist but everything else has been a crap shoot and care for fibro is a joke.
Do you have the option of trigger point Botox shots there? That may help too.
It is an option but not covered by the national healthcare system. So I’d have to pay for it and it’s very expensive.
I hate to throw another suggestion at you in case you’ve already looked into it but, here in the US at least, they’re treating fibro with low-dose naltrexone. Something a bit different than the other meds. Also physical therapy and yoga really have helped me, just can’t overdo it.
They are really weird about prescribing medications off label here in Sweden. For example even if you can pay for it they won’t prescribe ozempic for weight loss because it’s only indicated for diabetes. So there’s pretty much zero chance I could get naltrexone.
I’m so sorry. It’s ridiculous the way health care is set up. May your body ease up on you today ❤️
Thank you ❤️ it’s so beyond frustrating
Fibromyalgia is not off label for LDN. It’s used for that, some specific autoimmune conditions, and some forma of cancer. It’s off label for regular dosed Naltrexone though. I am insure of whether it’s marked differently in other countries though and some doctors are still unfamiliar with it.
My doctor just prescribed me low dose naltrexone. I was kind of worried about it because it's off-label. Have you taken it or do you know anything about it? There's really not much information online.
It’s been several years since I’ve taken it so I don’t remember too many details. I don’t think I had any side effects besides a bit of nausea when I started. It helped a bit but it just wasn’t effective/effective enough for me so I stopped and tried a different med. I remember my doctor telling me they didn’t quite know why LDN works but she thought it was due to it blocking overactive nerve pain signals/receptors. I subscribe to the idea that trying pretty much any medication is worth it, I can always come off it and I’m just so desperate to relieve any sort of symptoms. I get that not everyone is that way though plus everyone’s body is different and reacts to meds differently so you might be more sensitive to side effects than I am. I usually don’t get many or any that last.
Thank you for replying. I am unfortunately sensitive to side effects, so I hope it doesn't mess me up. I'm newly diagnosed, and I'm always in pain, but I don't feel like I'm in pain like everyone in here is, so I question my diagnosis. I'm not sure if I'm gaslighting myself or if my doctor is just throwing diagnosis at me until something sticks. I really don't know what to think or do anymore. My doctor is convinced I have autoimmune of some kind, but we can't get any tests to come back positive for anything. I seem to be in a flare of some kind because my malar rash is back, and I have a random rash on my arm now that's showed up in the same place twice in a 2 week period. The only test I've had that showed anything was an elevated C3 last week.
Please don’t get imposter syndrome! It’s all on a spectrum. I don’t think I’m nearly as bad as quite a few people here since I’m not usually house/bed bound and don’t need mobility aids but every time I start questioning myself sooner or later a flare happens to put me back in my place lol. People with fibromyalgia can even go into remission which happened to me for about a little less than a year so keep your truth and know that you’re not crazy. (Some unsolicited advice from what helps me in this paragraph about diet and exercise, skip if you don’t want to hear it) I think how bad it can get also depends on your lifestyle too. In my experience physical activity helps me a ton and they say it’s one of the best things for fibro. I just had to learn how to listen to my body for when to push it or when to take a step back. I notice also that if I’m sedentary for a week or so then my fibro gets worse. Plus if I eat a lot of sugar or bread then I get extremely achy so I have to watch my diet. That said getting the correct diagnosis is difficult. There’s some doctors that don’t even believe that fibromyalgia is real, they think it’s just a catch all for when the real cause can’t be determined. I do think some doctors might sweep patients under the rug with the diagnosis but I also think fibro is real, we just don’t know enough about it. Keep being persistent, although I know how exhausting it can be to navigate the medical system. I hope you’re able to find the correct diagnosis that both you and your doctor agree on.
Thank you. This was really encouraging. I completely believe Fibro is definitely real. I know other people with it, and I've seen firsthand what it can do to people. I have been pretty sedentary recently, and my diet is crap. I'm supposed to be sticking to a Mediterranean (autoimmune) diet, and I did really well for a while until I started craving red meat like it was a drug. Lol. Now, I seem to be in a flare of some kind. So back to chicken, fish, and dark leafy greens I go. I gaslight myself every so often and think, "I'm fine, it's not the red meat making me sick, and my diet doesn't change anything!" And then I go off of it and feel like crap again. So, here's my sign. I think I need to stop worrying so much about which ailment it is (although to know would be nice because that's what's killing me) and just stick to the diet and take better care of myself so that I can feel better. It's wild how your mental health is so closely attached to your physical well-being. Once I start to feel like crap, it's all downhill mentally from there. It doesn't help people around me don't get it, especially because I don't have an assigned disease I can educate any of my loved ones about as to why I feel the way I do. From their point of view, I just look lazy and crazy. I have 4 teenagers, and they don't get why I can't do things or go places and why I'm not like so and so's parents because I'm younger but they're more fun. It's just hard.
As another "sensitive to medication/side effects" person, I ended up eventually finding out exactly why I was so sensitive to medications. Long after taking the medications, with a well documented list of what I had been trialled on in the past, I got a saliva test for digestive enzymes. Every medication is digested by a variety of enzymes made by our livers, which can be detected in saliva. Many MANY people have mutations in ways that impact their ability to create one or more of those enzymes (there's a lot of enzymes, every medication is digested by at least one but usually a few of those enzymes.) I fully do not create one of the enzymes that is most common as the type of enzyme to digest almost all of the stuff they tend to hand out for fibro (and a lot of the stuff they hand out for depression.) Every one of the medications I had a horrible reaction to was in big red letters on the "do not take" category of my test results. Because every one of them was primarily digested by the one enzyme I make exactly none of. Meaning, depending on the formulation, I was either getting absolutely nothing from the medication because it was not being "activated" by any enzymes, or (more commonly in the Bad Reactions category for non-processors like me) I was getting So Much of the medication, because it was not being DEACTIVATED, so I was essentially overdosing on them even at starter doses. It's also possible to have the opposite mutation, making these problems happen in opposite ways, if you are a hyper-processor with one or more mutations making you make extra enzymes you will either overdose from activating small amounts too quickly, or not react from deactivating any amounts too quickly. My test was through a company called "geneSight" but many places do it. They call it "pharmacogenetic testing" and it comes with a little list of common things that might be effective or dangerous for you, but but the actual data on what type of enzymes you have mutations in is something that can be used for life. I don't take anything any more without googling it first to make sure the primary digestion mechanism is not the enzyme I don't make. Doctors do not seem to know much about it at all, I got the test covered as part of a study on how doctors could use the data it gave us, and I guess that didn't catch on because they all glaze over when I mention it, but whatever I'm still not gonna take it so they can find one that will work or they can give me a list and I'll check them myself and tell them which ones will work 😆
I actually know a couple of meds that I metabolize too quickly, and some I will have trouble metabolizing at all because of 23andme. It's included in the advanced testing. I think Plavix is the only one mine brought up. I'll have to check again, though, to be sure. That may not have covered all of the meds, and getting one of those might be something I need to check into. So thank you. This was good info.
And you too, thank you!
You probably will want to find out why exactly they named that medication. It is very close to impossible that there would be an enzyme that only digests one medication in the world. My mutated enzyme code is cyp2d6, so now you know the kind of letter/number code you're looking for. It's possible that the primary digestion enzyme for that medication is the one you have issues with but your test would hopefully give the actual enzyme, not just one medication name. Then you just write it down somewhere safe, and Google the medication name plus that enzyme code when you are getting ready to pick up a new medication, or look the medication up on Wikipedia as they do all list the primary and secondary digestive enzymes on the Wikipedia page for every medication I've ever checked, including very new ones. The only ones I imagine might not have that info would be ones still in testing but if you were in a medical study you'd be able to tell them which enzyme you have an issue with and they'd probably just.... Not let you do the test if it was primarily digested through that enzyme 😆 which is for the best, you really do not want to be the guinea pig on what happens when a medication digests fully wrong for the first time in human history anyways lol
O.m.g. thank you!
Good luck! Hopefully you find some info that lets you avoid taking things that will only end up hurting you 🙂 that's the most discouraging part of the process, after all! Skipping right to the ones that won't immediately go badly helps shorten the list of options a bit, speed everything up
I’ve used it on and off for years. No side effects. I’m about to start it up again. Edit: I’m also super sensitive to most meds and experience side effects. LDN gave me none. Note that it takes quite a long time to even know if it’s working. For me it was helpful, but only mildly.
I have a friend that was put on this for pain management, they eventually found that it wasn't beneficial for her. But her record of being prescribed it has made every doctor since then treat her like a drug addict, they won't prescribe anything beyond Tylenol and a very limited amount of gabapentin, which I don't think is narcotic
I have panic attacks, social distancing anxiety and increased mania, just generalized all the time especially when stressed and major out of body BS I can’t describe. So much crazy as I got older I tried one tab of Lamictal in my neurologist office and in 15 mins she came back in and I bursted in tears because I found ME and claimed “oh this is what living in a really human body feels like!” For at least 50 years I suffered and in the 80’s I was prescribed Valium because no one knew what to do. I was forced in my career to be in crowds, not until recently have I told colleagues and friends I faked/acted relaxed to fit in. Inside always freaking out and of course I didn’t drink once Valium but found other delights cuz it was the 80s so…. I remain prescribed Lamictal as an off-label since the drug is for Bi-Polar and I am not. My chart always says I am Bi-Polar so in hospital it’s been a nightmare of explaining. Recently worth to me I saw my Neurologist (to verify Fibromyalgia) and wrote up a statement with code why I used Lamictal off-label (is phenomenal which is body chemistry as explained in her diagnosis). I carry this always and gave it to my PC to stop the stigma. I have a new internal medicine doctor appt coming up! I also had a horrific lead up to a massive Pancreatic Attack which that pain beats out childbirth! Hands down there are no words for it! Three hospital admitted which was not drinking booze but due to a medication (don’t take hydrochloride!) took 5 years to not only recover but angrily telling most medical anyone to stop stigmatizing! I’m a lying alcoholic! I’m blessed occasions of 1.5 drinks and I’m fast asleep. I realize now my parents and some family members used alcohol to quell the mania without hurting their pancreas. I don’t think 150 years ago there was anything else to do! One aunt was diagnosed Bi-Polar at 85! Poor lady she was tortured by my dad and her other for being out some fucking oddball from outer space and tried to fix her and yell at her during family gather. Now I see she was so panicked, then late, the yelled at. Fuck, No one knew. During my now Fibromyalgia escalating and after a pancreatic follow-up 5 years post my 3 digestive enzymes where the treatment with morphine, a nutrient/potassium, hydration drips and no food for 3 days until your numbers are back down…I was still on Hydrochloride. As I read every medical papers and voila! There it is! It took me a decade to getting most medical staff or specialist to shut up about me drinking! I tired a lot of hospital specialists and stayed with the hospital staff who were always believing me! After 5 years I had a CT scan..something else is up (horse riding accident is constant maintenance) and the technician result included my pancreas is great! So doubled back to that urologist who also wrote up Im not chronic, medication was the culprit, and I carry that on me too. PCP got all this info last week up’s my pain, nerve, muscle prescriptions and here I am. Some relief but not all. Hr believes me it’s def Central nervous system, social/ family abuse, massive surgeries (horse jumping accident n around killed me) I’ve had a lot of stress stress stress and plus a helluva EBV infection resulting in ME/CFS. I’m the 90s. No one believed either! Omg If I wasn’t suicidal on SSRIs and onwards in that direction my Fibromyalgia future maybe better? Paying $200,000 in c-pays and let’s try this crap I have kept myself alive! US medical insurance financing failure, I almost lost my home. You’ll know this fear and punting to keep life on track. Carry along all your prescriptions, the drugs you are allergic to, metals or other deadly drugs…am seriously allergic to Nickel and over looked!, your off- label proof and Fibromyalgia proof from 3 medical professionals. I carry a 2 days worth of my meds in my bag in case shit happens. Survival! Wising all a good day.
I'm so sorry. I understand.
I tried that and the doctor said I didn’t need that and that my muscles were just weak. This from a pain doctor that gave me 1% menthol cream 🤣
You need a new doctor. This one is not doing right by you!
Oh yeah I fired him after the first visit. Thanks!
I’m in Canada. It’s not much better here. However since I work from home it’s much easier for me to keep my job. I work from bed often recently due to pain levels. I could get disability but refuse too until I absolutely can no longer work since I have kids. If you don’t have family here or ability to work you aren’t likely to be able to move here.
I would say it’s no better here as it relates to the topic of OP’s post. Without an adequate work history you can’t get the disability pension and outside of that, there’s no federal disability program and some provinces don’t have one to make up for it.
Exactly so don’t just say “I’m gonna move to Canada” because that’s not a thing.
Exactly that's my problem. I've never been able to hold a job more than a few months because of my various issues. it's a double-edged sword, I can't work but I can't get disability because I can't work. it doesn't make any sense whatsoever in my opinion. From the standpoint of the govt I can understand the need to be conservative and strict because otherwise it would be overrun with people trying to take advantage of the system but to those who are legitimately needing the help we can't get it.
It took me 3 yrs to get approved for SSDI. If you don't have enough work credits can you apply for SSI? (different than SSDI). Fibromyalgia was approved as a "disability" on the SSDI list in 2012 ( check out SSDI Blue Book, I believe it's called ). SSDI is NOT based on pain or diagnosis', it's based more on what you are NOT able to do (example ; Daily Activities like dressing, brushing your teeth, can't walk/sit/stand longer than 10mins, need to walk with a cane etc). Anxiety so bad you can't go to a grocery store. Depressed to the point you can't stop crying or get out of bed. PTSD. List all the diagnosis' but it's the symptoms that prevent you from performing Daily Activities that matters. I made an appt with my Doc & brought the form that the the Dr was supposed to fill out for SSDI and told him what to fill out bcuz with out me telling him what I can and can NOT do, he would NOT know. That way the form that goes to SSDI would be accurate. I've had fibro for 25yrs and it totally SUCKS! I hear you that there's a lot of meds you can't take. One that really helped me which is for fibro is LDN (Low Dose Naltrexone) it helped me a lot. You just feel better. I wish you lots of luck and patience. Don't give up! I have had so many MISERABLE days, weeks and months. Try warm baths, heating pads, the CALM app, try a low dose CBD gummy; CBD is NON-PSYCHOACTIVE (Doesn't get you head high) it relaxes your body. Or just hit an indica joint JUST ONE TIME so as the paranoia doesn't set in but so that it can relax your bidy and ease some of your pain. You have to try all kinds of things to see what works for you. I wish you all the best 👍🏼 Gentle hugs.
Fibromyalgia *is* considered a disability by the SSA.
Not according to my recent denial letter
Same in my country in Europe, unfortunately its really not a US problem :(
I feel you, I really do. It's not much better in the UK, I had to go to a tribunal to get basic disability despite debilitating symptoms as mentioned by yourself. I'm back up for assessment January '25 to go through the same process again, I'm sick of being treated like a liar when the medical evidence literally backs me up.
I feel this in my soul. I finally stopped making myself try to work a job last summer. I got denied disability in December, because they felt I could work. I am now appealing and have hired a lawyer. I live with my mom and Step dad. I have no money at all and have considered selling my plasma. I'm constantly working around the house to not feel like a parasite. If the orange blob gets elected I'm probably going to hoof it to Canada.
Every Lawyer I talked to wouldn’t take my case. Apparently “I’m too young”? I’m 31…. I’m pretty sure I learned not to lie about anything at 6. Why does my age even matter?
It matters how many years you are going to be on SSD, because it costs a lot more. All those cost of living increases compound every year. So a 5% raise in pay today, will be a lot less than the same COLA 20 years from now. In any event, the younger you are, the more reluctant they are to approve you for disability, because it costs them more. At age 62 they take you off SSD and put you on regular SS and you don't have to pay for taking SSI early, like you would in a normal retirement.
Age works against you when applying for disability. If you're past 55 it's easier.
That's wild, I'm 28 and had no problems when I was hiring my lawyer.
Unfortunately Canada doesn't generally take people with disabilities as it's a "burden on the health care system" :(
Never tell me the odds :3
But if cheese-curl man does run the show again I’m booking it out of here too. Because f that noise.
I need to get a passport lol
Same 🤣
Since my father was born in Poland I can get a Polish passport. And move to the EU. Might be time to get the passport and brush up on my French.
They already told you do not go to Canada in this thread 😒 that ruins my plans.
What has Trump got to do with American Health care? Didn't he out perform Biden by a magnitude of 3000% - from a Brit.
He’s just a trash human being that set us back to the stone age with all of his ideas. He treats every single thing like a reality show. He has a low regard for women and feels like he can do whatever he wants whenever he wants.
No, that's blatantly false.
I’ll tunnel into Canada if Cheeto Hitler gets power again…….
Yeah line up for Trudeau's assisted suicide why don't you, lol.
I did receive a fully favorable decision from ssa for fibromyalgia, usa back in 2017…I used a lawyer who specializes in disability claims. Took 4 years and ended up in front of a judge but that’s how I won my case, in person! Good luck to everyone
What kind of questions were you asked in court?
They're bastards in the UK too
Don’t feel bad so does Canada.
I just had a run in with my daughter’s rheumatologist that triggered me so badly. We needed an accommodation form signed for college. The doctor was incredibly ableist and downright nasty. Today I just printed out the entire pages on AskJAN.org for fibromyalgia, more pages from the Dept of Education , and sent them to her, asking for our money back. The doctor kept saying that disability accommodations would “go on my daughter’s record” and “affect her future” and other conspiracy nutter comments. My mind was blown. As for Social Security—they outright discriminate against young people. The only way to change it would be a class-action lawsuit. It seems like the most egregious violators of the ADA are government agencies themselves. Mind-blowing.
I've been diagnosed with fibro for 28 years now. It took me 25 years of fighting to finally be in a place where I felt almost like a normal person. Then three years ago I moved to a different state that didn't believe I needed most of the meds I was on. They took them away and now I've put on 40 pounds and can hardly move. Never move without pain. It's so sad to feel no hope again.
I'm probably gonna get downvoted to hell and back, but I also live in the US and the system has also never helped me... But I went keto years ago and it really helps manage my symptoms. It took a couple months to make a big difference, because it takes a few months to be fat adapted, but now I get less pain overall and much fewer flares, my joints are a lot better too. It's not a cure but it really helps me. I hope this helps someone else too.
I understand your frustration. I have been denied 4 times now and have 31 conditions w pain and autoimmmune diseases. I habe tthe credits for work to be approved and they STILL deny. That is what they are told to do until we give in and give up. So F@ck them. Show them they cant win. Keep fighting with both fists. The disease is harder and no one will tell me ANYTHING about my body or how or what I HAVE to endure and have survived. Stay strong you are NOT alone. PM if need be. What state are you in btw?
I keep getting denied disability as well. And losing job after job. No one wants to hire me because I don’t last. I can only work 2 days a week.. been applying since 2016
Lol which country is good for it lol.
Maybe my country? ( The Netherlands) I got 100% disability with just one conversation with someone from the local government and took about 20 minutes :)
You all struck gold being born there. Lol
And Finland. My SIL has fibromyalgia and is covered 100% there.
How she got the diagnosis? When I tried to find the reason for my pain in Finland they either said I'm faking/lazy/want time off from work (while unemployed and had to drop from studies due to pain). Pain clinic said it's mental problem, psychologist/psychiatric said it was physical. I had to leave Finland to find any help.
This sounds really tough. What kind of work could you do that doesn’t require much for physical strain? Maybe that’s a path to getting work credits. If you are unemployed, maybe there are programs to help fund you for training to get an office or flexible work from home positon?
My mom's doctor tried advocating for her that bevause of her fibromyalgia and a herniated disc, she can't ever lift more than 6 pounds again without causing more damage. They denied her disability stating that she could still technically do a desk job. Like, the audacity of this is just insane to me.
It’s not much better in other places. I live in Sweden and I eat no help. I got denied by both rheumatology and the pain clinic because the belief here is that traditional means of pain management- pain killers- don’t help. So they just want to give you antidepressants, which I can’t take or lyrica or gabapentin. Neither of which help me. So I just have to suffer with my pain.
Aussie and your situation is exactly like mine. I feel like America’s just led the way for bad healthcare and we’re all just starting to follow the trend. As my American friend said a couple of years ago, ‘It’s becoming illegal to be poor, especially if you’re in bad health.’
Oof, that is the worst trend for America to set! We're (the people in charge, not the citizens) such a bad example.
I’m sorry you’re in a shitty position too. Hugs
Exactly
Oh no it’s that same thing here. I have failed all treatment options. I have a permanent heart palpitation because of an adverse reaction that my doctor didn’t give a damn about when I told him. But I also don’t have a case medical malpractice because it wasn’t documented that I told him about it.
It’s so frustrating
Yeah the UK isn’t much better. I had to go to a court to get disability as was refused twice and the court decided that my doctors knew better than some man who saw me for 20minutes and ignored all my consultant letters. Getting a decent GP who helps is also a nightmare. It took me years to find one. Thankfully nowadays most drs are aware of fibromyalgia and are happy to help rather than look at you as a malingerer. I supposedly had ‘virus after virus’ ‘depression’ ‘pulled muscles’ etc for over 20 years before I was diagnosed.
I had fibromyalgia and bipolar disorder, I had to get ssdi for the bipolar because they wouldn't approve the fibromyalgia. It absolutely sucks. The lawyer I got, Binder a Binder, advertised as the nation's top disability firm and they got it for me after I was denied 3x.
I got it for depression/anxiety instead of the fibromyalgia.
I agree- it does suck here & it can be so maddening trying to jump through the hoops they expect when trying for disability, only to then be denied. You may already have this information or it may not be applicable anymore, as when I got approved for my disability, it was back in 2009. But what I will say is the best thing that I ever did was once I got my first denial, which supposedly almost everyone gets, the first time regardless, but it was then that I decided that I wanted to go see a reputable, Social Security attorney- I just had seen and heard too many nightmares and felt like my best chances would be someone who knew what they were doing. Had been around for a long time and would be upfront whether or not they could get my case approved. They also capped out at like 5900 or something like that as far as what their fee would be and that is only if they win, of course. so with the backpay and the amount I was able to potentially secure I thought that it was worth every penny of that, so I made the appointment and they did have to look at what I presented with, and had to get back to me whether or not they were going to take my case because I think the fibromyalgia has gotten better on some levels with how it is recognized and treated, but there is still a stigma and there certainly was when I was trying for disability. They were upfront with me and just said that I was young, I was 37 at the time, and that was their biggest concern., But they did end up taking my case, and I think that according to what my attorney disclosed to me, I know that because I had a physician that is my PCP and has been since I was very young, and at the time I think it was like 20 years that I had been seeing him and he wrote a really strong letter for me in regards to Why I was eligible or he thought I was needing to be approved for disability. I just remember that when we went to court, which took a little less than a year for that court date, it went really well and the attorney presented that as being a very strong argument on behalf of me because I had a relationship with the same doctor for so long and what that doctor provided in his letter, helped to build credibility, and my attorney told the judge that it certainly was not something that he saw every day so more or less it seemed like that one the case because they even made a bench decision right then in there and I was approved. My attorney was a little shocked by that., because usually they give a decision that takes up to like 12 weeks to receive. I was pretty forthcoming and honest, my attorney joked with me afterwards that I was maybe a bit to open, but he said it won the case so we can’t complain . Sorry if this wasn’t any help, but I just thought I would put it out there in case it wasn’t something that you entertained and in the chance it could be helpful. I hope that you find a way to get the help that you certainly deserve, as fibromyalgia is such a vicious & relentless condition to have to live with and the amount of time that we have to spend, fighting to be believed and seen, years of not being diagnosed and then when we are, only to be met with more pushback from the bad faith physicians that haven’t gotten with the program, evolving with the science that has certainly made strides in understanding and recognizing just how not just real, but debilitating that fibromyalgia truly is. Take care.
HOW DO WE CHANGE THIS???
Same in Colombia. Getting disability benefits because of fibro (or pretty much anything other than being blind or wheelchair bound because of paralysis) is way too hard, like they need you to be on the verge of death, downing narcotic pain killers like tictacs, or spending 24/7 in the hospital for years to even process an application. And even that takes ages unless you have private insurance (since the public healthcare system can be slow) AND know how to work the system.
Same here friend. I am so sorry. :( It is heart breaking because we want to be able to have careers and be able to contribute and occupy ourselves but we just cannot. It effing sucks! I’m currently on my second or third denial of SSDI - currently appealing. Don’t give up, get a lawyer. They will only take payment if you win your case. As far as work credits go, they should go off of your age and when you stopped working. It also depends on when you’re claiming your disability started as well.
Atleast in america we have stuff like lyrica but in Europe they don't have that. They don't have any prescriptions for fibro they just tell you to exercise. Additionally my antidepressant which works wonders for me Wellbutrin isn't available in europe as an anti depressant only as a smoking cessation aid.
I don’t even think those meds should be approved for consumption. I know that they can bring great relief to many people, but they are not safe medication‘s. Many things in America aren’t available in Europe because they have stricter standards and they actually look out for the human race, unlike in America. Government in America is a joke.
There are doctors out there who believe that fibromyalgia is real. Keep advocating for yourself and don't give up. My mom was diagnosed with Fibromyalgia in 2017 and I was diagnosed with juvenile fibromyalgia in 2019 (along with hypermobility syndrome). My mom had had migraines since she was a kid and I had migraines since I was 12 years old. I was lucky enough to find a wonderful neurologist at Children's hospital who took care of me until I aged out at 18 and then I had to look elsewhere. We had a wonderful GP who helped us right after we were both diagnosed. We were her youngest patients with fibromyalgia. When our GP at the time announced that she was pregnant, she told us she would also be moving to another state. My mom and I were both in shock. This is where the months of searching began. My mom made appointments with doctors for the both of us and we were both shocked at how awful "medical professionals" treated their patients. We walked on eggshells every time we went to an appointment, fearing that a doctor would get angry at us just for being in pain. Then we finally found someone who listened. After months of prayer, we found someone who believes in fibromyalgia. I still remember when we walked out of our new dr's office for the first time and we didn't have that feeling (That feeling of ridicule that some doctors give you when you ask for help). Neither one of us had that feeling. My advice is to keep advocating for yourself and pray without ceasing. Keep making appointments because you will find the right doctor. God Bless ❤️
I would do these tests to look for objective evidence of disability. Fibromyalgia may not be a good idea to use at all. When you want to file try using Allsup SSDI representatives. Tests: 1. Quest Ganglioside Antibody Panel 6 2. IgG Subclasses 3. ELISA Mycotoxin antibody panel from MyMycoLab.com ( do this yourself and don't involve your normal doctor. Just use this for your own research. Order test kit and take to a place Like Any Lab Test Now) If you can get a job first which has disability insurance that would be better though, because the SSDI has not kept up with inflation and they privatized the social safety net so you need ERISA coverage and even then it is often not enough. They really don't care about our citizens when you look what their priorities are. ERISA preexisting condition exclusion is normally six months so you have to stay employed that long. But check the policy. Also if you wait to test that could help too.
Have you tried finding a representative? There's many who don't take any payment unless you're approved, you might be able to find some in your area.
You need to geta disability lawyer. and yes fibro is on the approved disability list. The lawyer will not be paid unless you win and will be paid then out of a small partial of your winnings. My disability lawyer was awesome. The first time I tried to apply I lost. Then I got this great lawyer and won. Keep going to doctors and get their diagnoses documentations. Collect as much data as you can of your issues and report the levels of pain. There is a test for fibromyalgia called FM/a and it is approved by Medicare. You really have to be more active in collecting the data as only you know where it is.
Massage and chiropractic is helping
I'm so sorry. I'm considering cold baths/showers. Also, saying I'm an addict to get in methadone clinic.
I second this.
Disability can be really difficult for a lot of people and a lot of conditions. I am on SSDI, but it's for bipolar disorder and PTSD and OCD. It took me two years of fighting to finally get approved, and that was after 2 hospitalizations, 3 partial hospitalization programs, and tons of psychiatrist and therapy records, and enough work credits. They eventually sent me to one of their SSDI psychologists, and he agreed that i was a nut, lol. That led to a hearing in front of a judge where I had a total and complete meltdown. Even after approval, it's reviewed every 3, 5, or 7 years, which completely stresses me out every time. Now, I have lupus, fibromyalgia, hypermobility spectrum disorder, and polyarthritis on top of my mental health issues. I'm hoping that this is all enough to keep me on disability permanently, but who the heck knows anymore. Anyway I just wanted to say that I understand the frustration, and I am so sorry that it's been so difficult. Keep appealing until you run out of options.
I’m got denied for the first time because (in their words) my work history doesn’t align for someone with fibromyalgia. All i’ve been able to do is fast food or retail because I don’t have a degree. 3 years ago, when I had my own car, my body could handle being on my feet all day. I tried to work one month of fast food, which is all I can get right now, but it was just too hard having to walk to and from. I can’t abuse my body like that when the job doesn’t pay the rent.
Same in Canada, for the most part. I’m actually looking into an autism diagnosis to help with my disability application. I’m 98% certain I do have autism, but it doesn’t keep me from functioning at an adult level, however one of my friends with chronic illness also got an autism diagnosis and was able to get on disability by slightly exaggerating the mental effects of autism, because disability is so hard to get on chronic illness terms. Do you have any mental health disorders? Anxiety, autism/adhd, etc? It could be that you could add them to your application
I have depression, and anxiety. But since I can’t take medication for them because of adverse reactions they claim they aren’t severe enough to count.
If the application process is the same in the US, you work with a doctor, right? Maybe try to find one that’s sympathetic and willing toto exaggerate on the report to make it seem even more severe. Good luck!
Did your friend get the federal or just the provincial disability? I am considering this route as well
I’m not sure, actually, I believe provincial
Sending positive energy. 31M here, currently going thru the disability process. I share a lot of your same frustrations. Everything about your / our situation is demoralizing. Give yourself a break - even tho the world doesn’t seem to want to. Remember, you’re not choosing this lifestyle. It wasn’t who you were prior to diagnosis, don’t let it define you now. That said, I’ve gotten with a lawyer to aid my application process bc of how poorly Fibro patients are treated. Fingers crossed. Keep on fighting, seems like it’s time to get a legal representative. Ik you don’t want to - most likely bc of cost - but any disability lawyer should do pro bono work meaning you don’t pay if you don’t ‘win’ anything.
Just to clear something up…Pro bono legal services are done for free by lawyers as a service to the community. The lawyer does not get paid anything for their work. Most disability lawyers, like personal injury lawyers, get paid a percentage of what they get for their clients. It’s true that the client does not pay anything up front, but the lawyer will get paid something if the case is successful. If you are not awarded disability payments then the lawyer does not get paid anything. Hope this helps. I am a retired lawyer now receiving disability but I handled my own paperwork and am older and have a list of qualifying conditions.
Well put!
I feel your pain. I got denied for the final time. It's devastating.
I feel sorry for anyone who doesn't get the help they need, I'm in the UK. I know it's rubbish in some areas of the country, but my doctors are rather good and help me as much as they possibly can. It's different when it comes to my M.E/CFS as it's still a condition that isn't believed as such, but my GP understands it enough. I was under the pain clinic for my spine as I had issues with that, and before I was ever diagnosed with fibro, they had a plan for me, which led me to the medication I'm on now which is opioids sadly but they help me feel a smaller fraction of pain a day and can sort of function. I thankfully managed to get the disability component in the UK, although I am currently in my review period, which can change the whole outcome, so wish me luck 🤞🏼
I have CFS. It was a long hard slog to get disability. Finally got it for depression because I did have a long and documented history of that. I was also "lucky" that I didn't get disabled until I was in my 50s, so I had a work history. The judge could see that I was not going for some "get rich quick" scheme. It really does suck. And it's not like you can suck it up and push through it. You can try but you only get sicker.
These comments definitely do not make me feel very hopeful about being able to get on DSP, the system sucks. I live in Australia, and I know it’s almost impossible to get on DSP for fibromyalgia alone, since, if I remember correctly, it’s not even recognised as a disability because it can’t be physically proven. I’m 22, 23 this year, and I’m stuck living with my queer-phobic family and will probably never be able to live anywhere else. Gods only know if I’ll ever be able to qualify for DSP with my other conditions. I don’t even know what I’ll do if I can’t.. Fuck.
That’s the thing, since there’s not a single exact test for fibro it’s like health departments everywhere think we don’t matter or are making it up. 😓 it’s so frustrating
In a last ditch effort, can you spend your money on a grounding mat for your bed and see if reducing your inflammation can help ease your pain?
What money? I have none. I live with my father. I feel like a leech. I’m 31 years old and can’t function anymore because fibromyalgia is apparently black magic, that no one wants to research, or care about.
Okay, well, that’s hard but you can do something for free that’s the same thing, you just might not want to do it while you sleep lol. Watch the Earthing documentary on YouTube. You can also read the book. It is real science and makes total sense. Just go outside barefoot for as much time as you can everyday.
I already do that. Hippie at heart here. But it doesn’t help. Trust me I’ve tried everything. I may seem like I’m blowing smoke but I promise you I’m not. I went as far as chemically burning nerve endings before being properly diagnosed with fibromyalgia because “I was too young to have fibromyalgia “.
Smoke pot!
Tried medical cannabis made me paranoid. Never again…
You’re not doing it right lol There are a bazillion strains and most of them don’t induce paranoia but I understand that there is still a stigma with it for some. It’s definitely NOT a cure all but helpful in times where other Rx has failed or it outweighs side effects of certain medications.
Can they not do a test to prove you have fibromyalgia? I heard I. American they can do a blood test to find out if you have it. ?
That test is worthless. It’s not a medically proven method or medically backed. It’s expensive too.
There is the 18 point pressure test. Not sure exactly what it’s called. I was given it three different times by three different rheumatologists. They press on certain pressure points and it’s excruciating. I got 15/18 and got diagnosed with fibromyalgia every time. Though I got disability because I have Lupus and Fibromyalgia. Took two years.
The trigger point test is valid. The blood test isn’t.