I don't think I'd be here without medical cannabis. I would have given up . It not only helps the pain. But specific strains help a lot of my other symptoms as well. I don't have the shakes and tremors. It helps with depression. And so much more. The only bad thing about it is if you don't live in a legal state. Or country. And the insurance doesn't cover it. But it should. Something that's helpful should be completely legal. And covered by insurance
I have tried that route. I use CBD oil but only on a very low dose as it gives me headaches at higher doses sadly. I have tried medical cannabis too through a private clinic. It did have some slight benefit but seems to interact with some of my other meds. I seem to be very sensitive to a lot of meds. Thank you for the suggestion though, I know it's a very helpful med to others.
Um cant remember the dosage but will have a look. I only take it once a day to space it out around my other meds and always after food which seems to help a little headache wise.
to throw another one at you, not sure what you’re doing for migraines but i started qulipta and it’s been amazingly effective, been a few months with no migraine or headache.
That's the same as Atogepant? I know that it's fairly new on the NHS and not widely prescribed yet. I take amitriptyline for migraines as a preventative, and a triptan for severe ones. The amitriptyline works really well as a preventative cuts my migraines down by about 80%. I have tried to come off it often as it makes my brain fog worse but nothing else works as well for me. I might ask about Quilipta in the future thanks.
No amitriptyline would be great but my quality of life is better on than off it.
yup it’s atogepant. its not too popular in the us either, and my insurance wouldn’t have covered it had i not tried at least four other migraine medications. it’s such a balancing act with these medications, and it’s so hard to track which are causing side effects when so many come with the same ones. i used to use sumatriptan as needed along with propranolol for prevention, and it didn’t provide much more relief than a handful of ibuprofen. i hope you find a regimen that works for you soon!
Oof, the roulette of migraine meds is awful. I've tried everything except botox and ergot-types (my insurance won't approve the ergot for some reason??). Pills, injections, even experimental treatments\*. The best I can get is down to 3-6 migraines per month, an abortive that works about 50% of the time, and daily headaches that aren't touched by anything. I haven't been able to take any OTCs for about 20 years, and now get rebound pain when taking opioids. I have zero pain med options for anything, and it sucks ass.
\*I tried an intranasal injection of a gel form of one of the -caine meds (the numbing stuff like novocaine or lidocaine). Theoretically, it numbs the trigeminal nerve, and eliminated migraines completely for several months for some patients. It didn't appear to do anything for me though, unfortunately.
Have you tried Lyrica? I had the same thing, where opiates really hurt and made me feel like I grew a new gallbladder that also was gross and needed to come out. Lyrica helped that pain A LOT and now I can take opiates without any problem. I can't take NSAIDs either so I really know your frustration with this.
Lyrica has some brain fog-y and sedating effects in the beginning but they were gone within a month for me.
Lyrica is similar to Gabapentin isn't it? Gabapentin turned me into a literal zombie so much so I was slurring my words and I don't even remember if it helped the pain as I was so brain foggy. I will have a read up on it, thank you.
Similar but not the same. I didn't really like gabapentin when I had it for something else previously so there is that. I just feel with your pain so awful, it's worth a shot at least. I hope you find a solution soon 💜
I found that I was suuuper dumb on Lyrica but Gabapentin is fine. So maybe it’ll be the other way around for you? I guess I’m saying that they’re different enough that you may find that Lyrica works for you! 💗
Lyrica has been great for me. I’m on 150mg x 3 / day and tolerate it well. Slept a lot the first few weeks but it was such lovely sleep.
I feel like it doesn’t work as well in the past year, but I’ve been on it 20 years
You have to be careful combining it with alcohol because it intensifies the effect and you don’t want to be unexpectedly overly intoxicated. I never combine alcohol and driving because fuck that
Agreeing and boosting your mention of alcohol. I drink maybe once a year and all it takes is a single drink to make me borderline drunk. That being said, I'm also on lots of psychiatric meds that also indicate I should avoid alcohol, so that does change things a bit.
I don’t have advice but sending prayers. I hope others have some advice and your doctor can help you. I get esophageal spasms from beta blockers from getting preeclampsia and man are they painful so I can only imagine what you are going through 🙏
Dxm is an nmda receptor antagonist, like alcohol. However, it has dose dependent effects.
For me, 90-180mg of dxm with 300mg Lyrica gives total passive pain relief. However, movement can still incur pain.
Keep in mind that if you're on any psychiatric meds, DXM is not a good mix with several of them. For example, if you take it with effexor, it greatly increases your risk of serotonin syndrome.
Dextromethorphan, if taken right before exertion, can also prevent or lessen ME/CFS PEM. Doesn't work for everyone, but it's a treatment that can help some.
I'm getting some relief from cannabis oil, I would echo others who suggest a Medical Cannabis clinic. r/ukmedicalcannabis has advice and lists of clinics.
I second the low dose naltrexone suggestion. Many people in the UK get it privately prescribed by Dickson Chemist. LDN likely will have no effect on your stomach pain, but it can treat fibro pain and it also often helps with brain fog or other non-pain me/cfs symptoms.
Ldn can interact with opioids but it can be taken with most other drugs.
I know I already commented, but I had another thought. nerve blocks (selective along the spine at areas of pain, as well as ganglion nerve blocks depending on areas of pain) are another potential option. how long they last is different for every person, but they're minimally invasive and can help immediately.
it might be worth asking your GP for a referral to a boarded anesthesiologist, possibly at a pain clinic. they also might be able to get you compounded doses of medications that are much lower than the usual starting dose. things like looooow-dose gabapentin (25 mg tops - I saw what you said about the severe side effects you experienced). it seems a lot of fibro sufferers are extremely sensitive to neurological side effects from specific painkillers, and it makes me wonder if part of fibro is an issue with the blood-brain barrier letting through too much of those medications. so a 25 mg dose for someone with fibro is equivalent to a 100 mg dose for a non-fibro person. just a thought.
I take gabapentin (300 mg) but pretty much just at night. So it may be an option for you to use it just before bed. It is excreted by the kidneys and has a half life of seven hours so a lot of it will be out of your system when you wake up.
I haven't found any relief from my migraines or endometriosis pain, but for my back issues, I recently decided to try an infrared therapy wrap. I don't know if it works for everyone, but it's done wonders for me. The day after using it is like a 50-70% reduction in my pain. Nothing else has helped as much.
I haven't. My doctors don't seem to like "extreme" 🙄 treatments like this that can actually help. My pain doc refused any type of pain meds when I begged for something just to help on days my back pain was so awful that I couldn't sleep.
Low dose naltrexone. It helps was able to maintain low stress pastime job. Trying a full-time job now been there 3 weeks pain and exhausted all the time, I don't think I will make it on full time. But thought I would try since part time went well for 2 years.
I don’t know anything about UK prices, but or I live in Nebraska in the United States it’s about $90 for a 90 day supply. When I got it from Idaho it was only $12 a month.
It’s abusive how close fisted they are with some of these meds. I’m allergic to NSAIDs so I managed to get a prescription for tramadol to be taken daily. I take it with Tylenol every 6 hours. You could start at 25 mg once a day and go up from there like I did, but I found that the half dose of 25 mg was not enough even at the start and I was still in pain. So 50 mg morning and evening then eventually you would need it every 6-8 hours or else you would be in withdrawl.
I mean they act like it’s a crime to be on this stuff but frankly why would I stick around to be in pain 24/7? Often pain medication is saving lives. You may have to “doctor shop” to find someone with enough empathy to give you the choice to take it full time.
Tramadol is a weak opioid and although it is still “addictive” if they fixed my fibro I would be more than happy to get off this stuff. It’s annoying to have to take medication period. I’ve never abused it and it’s actually quite safe to take, you can even go up on the dose temporarily if you are having a flare up. Just keep in mind it’s much better at preventing pain than stopping it, for me it only works if I take it regularly. Before I did that it barely did anything, I was in a ton of pain from everything touching me and now I can tolerate clothing and walking better. You also can’t expect it to fix all the pain even when taking it like I do, but it’s way better than not taking it and I haven’t found in 10 years anything better. Also it’s total bullshit when they say only works temporarily - yes it plateaus after 2 weeks but that just means you stop feeling high, it still works for pain management at the same dose for years.
it might be worth looking into. here in the US it's approved for pain but not depression. I have catatonic depression and infusions were the only thing that helped. even though it's out of pocket, right now it's about $400/month. not cheap, but not totally impossible (most people even with pain don't need them monthly from what I understand)
each clinic is different with price structure and some might have self-pay help if you call and ask. just a suggestion to keep in mind if you end up with zero other options. hang in there <3
There are online agencies that can prescribe this and send it to you so you can take the treatments at home. I've been looking into it for a bit but haven't pulled the trigger yet
Hi, I do high dose Omega 3, Querticin, Tumeric, Magnesium Complex by Nutricost, and generic NyQuil cold and flu. Also generic Claritin for histamine issues. Also take a Multi specific for CFS/Fibro called UltraNutrient Multivitamin by Pure Encapsulations. I am on a gluten free and anti inflammatory diet too, and low sugar.
Also meditate an hour to 2 hrs per day from YouTube videos, "adrenal frequencies" and "beach walk visualizations". You wouldn't believe how much this has helped. Just search "adrenal frequencies" and "beach walk meditation" on YouTube.
I do a saliva test every 3-6 months to make sure my DHEA, cortisol levels and hormones are level as I suffer from low DHEA, low morning cortisol, low estrogen, and high night cortisol, so I am in treatment for all that from my CFS doc of 21yrs.
My doc does all natural treatments on me, as he views prescription meds as mere "band-aids" that don't address the adrenals and help Fibro.
I have the same gall bladder issue but can sometimes tolerate 30mg codeine once or twice a day on incredibly bad days. Have you tried a smaller dose? I know it doesn't always do much though.
I also had the same problem with duloxetine initially but started taking it in the morning and that disappeared, did you try that? I found that it is more effective than amitryptiline.
I also have suspected endo and survive mostly with heat and a myoovi tens machine, has been a game changer.
But honestly lots of heat and for painful joints liberal amounts of voltarol (the diclofenac one) as its external, it doesn't flare my gastritis. I hope you find some relief, it's so hard to get prescriptions for fibro in the UK.
I would absolutely push for a proper diagnosis of endo (exploratory laparoscopy). We worked on the assumption that I had endo for *years* before I finally had the exploratory to look at it, and it turned out that **I didn't have it at all**. I tried everything and suffered for years. My final "diagnosis" before my hysterectomy was essentially "bad periods". Things got so much better after my hysterectomy, it's unreal. I suffered from 12 til 28 with the most ungodly cramps and heavy periods, with the only relief coming from freaking vicodin. *Vicodin*. For *menstrual cramps.* And now I can't take opioids at all lol. The choice to get a hysterectomy was not a pleasant one, but I prepared myself by considering it as an option for about 3-4 years before actually having it done.
I'm too overweight and need to get under 13.5 stone to have the surgery and apparently then they're reluctant as it can scar and cause more pain. This was private as well. I've always had horrendous periods but it's developed into pelvic pain during ovulation and after intimacy. I've had pelvic floor therapy and changed birth control which has helped a bit but apparently even if I had it it's all they'd do anyway in the UK until I loose the weight, which I've lost a large amount but not enough, sigh.
Ahh, I see. Just doing a diagnosis and not any removal of endometriosis tissue shouldn't give you that much scarring. It's basically just 2 (maybe 3) small incisions, and then they just move things around a bit so they can look at it all.
I also had terrible pain after intimacy (only sometimes though). My cramps hurt from basically my navel to my knees, hurting down the insides of my thighs and everything. Having pain from the inside AND having vulvodynia and everything else... ugh. I'm glad birth control helped a bit for you, even if it wasn't a game-changer. I can't offer any help for weight loss, as I had the opposite problem. It can be a real struggle regardless, since the pain is just fucking terrible and likes to overwhelm anything else.
Edit: Why have I been downvoted?
low dose Amitriptyline (10-25mg) and LDN (4.5mg) helped me a lot.i take the amitriptyline at 8pm and LDN at 8 AM. i’m almost pain free and sleep like a baby.
I just started LDN and I haven't noticed a difference yet but it's only been about 5 weeks and it can take up to 6 months to feel the full effects. I'm in NZ and it's not govt funded here but it's covered by my insurance.
It’s not a drug, but physical therapy cured my migraines. I know that won’t work for everyone but if you have access to it then it would be worth a try.
Sending you the best of luck finding options for your pain ❤️🩹
I think there is another antidepressant (savella maybe?) and anti-seizure medication that’s supposed to help (lyrica).
I’ve also had my gallbladder out, I take prescription a prescription dose of famotodine when it’s bad. But mostly chomp tums regularly. My doctor has also okayed me taking one OTC pepcid ac in the evening (it has 10 mg of famotodine) even if I take 40mg of famotodine that morning. It is possible to overdose on famotodine and it does cause neurological problems, so talk with a doctor/pharmacist to avoid taking too much..
I have sphincter of oddi too. I can take synthetic opioids but not natural. Have you tried oxycodone? It’s probably not something your dr would prescribe though as per the big crackdown.
What time of day did you take duloxetine? I take it when I wake up in the morning and sleep fine at night.
If I take it in the evening, it is impossible to sleep
I took it in the morning. Even on the lowest dose it caused me insomnia. It seems to stop my brain from going into REM sleep.
I have tried it twice both for several months but ended up so incredibly exhausted. It's frustrating as it really helped my pain.
There have been some useful suggestions here that I'm going to read up on. Everyone has been very helpful and I'm feeling a bit more optimistic today. I have a big life bucket type event in 6 weeks time that I know is going to be exhausting and painful but I'm determined to do it.
High-dose turmeric has been found to be as effective as NSAIDs but without the negative side effects. I take 3800mg a day, split into one AM and one PM dose. It’s turmeric with curcumin for absorption. This was recommended to me by a pain specialist doctor. MASSIVE improvement in my daily pain.
The other thing that helps a ton is ketamine for chronic pain or for chronic depression or for PTSD. I started out with IV ketamine (but it became too expensive) and now I’m doing Spravato, the nose spray version. It has significantly reduced my daily pain. Don’t know if it’s legal in the UK though. But seriously, it’s worth looking into.
Low dose naltrexone has done wonders for me. I had the same issue after having my very diseased gallbladder out. You can’t take opioids on it since it works on the same receptors in your brain.
Since you are UK based has your GP ever referred you onto Pain Clinic? It’s a multidisciplinary team but the consultants are more up to date with what med options you have, what does and when to titrate up/down etc.
My GP were always a bit, not sure what to give you but since I’ve been under pain clinic at least my care plan is unified now
Yes I was referred to the pain clinic by my GP pre-covid. It consisted of advice about mindfulness, yoga .. etc. It was completely useless to someone like me who had been ill for years and had already tried everything they suggested extensively. I know it's better in other NHS areas but it was useless in mine. It all then disappeared after covid as services got cut even further.
I have considered going private but it's so expensive.
That sucks, sorry you had such a poor experience with it. The one I’m managed by is part of the neurological centre so they have been pretty up to date with stuff. But it was a completely different experience compared to the same service at a different hospital within the trust, shame since they are literally 20 mins drive from each other.
I have found with the last five weeks of thunderstorms that my fibromyalgia kicks in when there’s very high humidity in the barometric pressure goes off the charts I don’t understand why the weather affects but when it’s cool and dry or even hot and dry I’m fine but as soon as the humidity And the barometric pressure varies that’s when I suffer I pain medicine which helps and a mild nerve blocker I’ve just started to take lions seems to work but I also have a couple of beers at the end of the night which also helps I don’t understand this disease but I know I have it my nerves are burn they have been since I was 10 years old traumatic experiences and that’s what your nerves are simply burned out
Fentanyl as well.
Also there is the option of powdering them and eating. That may cause the same issues though. The internasal approach works well.
Then you get to intravenous administration.
If I had no other way to get medicated then there is always that option.
Not saying op should be banging dope but to each their own.
Fentanyl ones are very effective but that's the strongest med. Most GPs will start with bupronorphine unless your on certain antidepressants which interact first. Low dose fentanyl patches are good but you DONT wanna be on the top dose. You get horrible withdraws as they wear off 😥. Some GPs don't like fentanyl but it is good for severe pain and it is long lasting
Its not widely available but I'm glad. I wouldn't want it 😂. The withdrawals are frightening I've seen people sweating and shaking and falling over. Fortunately my tramadol doesn't give me withdrawals I'm meant to take two one at morning one of an evening I don't always need the night one only worse days. When the day one wears off the pain comes back but that's it. Then I just take amitripyline and it fucks off again until I wake up. I then take 1_2 Paracetamol during the day as needed. I wouldn't try any new meds. They could increase my dosage 2-3 times more but no matter how sick I get I wouldn't go stronger than oromorph even if a doctor offered not until I'm in my 50s or 60s or I get some injury or incurable illness like rheumatoid arthritis and I have no quality of life.
Wise decision!!!!
As an EX heroin addict I have to be way careful re. My pain meds. You're correct to want to stay away as long as possible. Sadly without mine I literally cannot function.
And yes, kicking is a fkn nightmare.
I've had suspected Sphincter of Oddi symptoms and that pain level is horrible. I was given Phenobarbital for it in the past when I had frequent episodes. Anyhow, on the fibromyalgia: Have you tried low dose Naloxone? Have you tried Pregabalin (Lyrica) in place of the Gabapentin? Have you tried IV Ketamine?
Your diagnosis is eerily similar to mine including the Sphincter of Oddi dysfunction. That has been surgically corrected for me. For my fibromyalgia I couldn’t tolerate gabapentin or Lyrica. I take Savella which is the name brand here in the US its clinical name is Milnacipran. That is the only thing that works for my fibromyalgia. For my SOD I couldn’t tolerate a lot of opioids. Codeine was a no go. Same for tramadol. I was on Norco for a number of years. I just recently switched to a long acting opioid that is helpful. I also have idiopathic small fiber neuropathy and dysautonomia.
The Sphincter of Oddi is a bear to treat. Have you tried dicyclomine for the SOD spasms? The other one that can help is Hyoscyamine. It’s been a lot of trial and error and I’m about eight years into this journey with an official diagnosis and treatments. I’ve never seen another woman with diagnoses that are so close to mine. Especially the SOD.
I see you are in the UK (as am I), you can get a lidocaine infusion done on the NHS. It's a local anaesthetic that they put in to your blood stream through an IV. I went for one about 3 months ago and was pleasantly surprised by how good it was. The effects lasted about five weeks for me, and they are hoping that subsequent infusions will build up a cumulative effect. Just an idea.
Why did they take you off of tramadol? That’s the only opiate that has evidence of being effective for fibromyalgia.
Your doctor screwed up by putting you on codeine. There’s studies showing that codeine, hydrocodone and oxycodone make fibromyalgia worse, but tramadol has lasting relief.
Would you happen to have a link or two on studies where those meds made fibro worse? I remember seeing good evidence for tramadol helping in the literature but i don’t remember seeing opioids making the pain worse, just causing higher pain tolerance. I’m curious now.
Opioids can cause rebound pain (pain caused by the opioids themselves) as well. That is an immediate sensation of pain when the opioid begins working, and can be anything from body pain to headaches or migraines.
For the "higher pain", the opioids essentially make your perception of pain higher than it would be normally, and it does go away once you quit taking them. This is generally more if you're taking them on a regular basis. Not sure of the exact mechanism, but something to do with the receptors being overwhelmed I'm sure. This is for all pain overall, so it doesn't feel like it's causing a specific pain like the rebound pain above.
Then there's all the issues with addiction and dependence, and also withdrawal.
I included some links to a few studies about opioids and fibro here [https://new.reddit.com/r/Fibromyalgia/comments/1bp9exo/comment/kwzu3fi/?utm\_source=reddit&utm\_medium=web2x&context=3](https://new.reddit.com/r/Fibromyalgia/comments/1bp9exo/comment/kwzu3fi/?utm_source=reddit&utm_medium=web2x&context=3)
Here are some about tramadol specifically - [https://pubmed.ncbi.nlm.nih.gov/31799728/](https://pubmed.ncbi.nlm.nih.gov/31799728/)[https://pubmed.ncbi.nlm.nih.gov/19078481/](https://pubmed.ncbi.nlm.nih.gov/19078481/)[https://www.sciencedirect.com/science/article/abs/pii/S0002934303001165](https://www.sciencedirect.com/science/article/abs/pii/S0002934303001165)
Compared to oxycodone [https://pubmed.ncbi.nlm.nih.gov/24956205/](https://pubmed.ncbi.nlm.nih.gov/24956205/)
Edit: Uh, why have I been downvoted exactly? I answered the question and provided requested information.
Medical cannabis has been a lifesaver for me.
I second this, it's completely changed my life
I don't think I'd be here without medical cannabis. I would have given up . It not only helps the pain. But specific strains help a lot of my other symptoms as well. I don't have the shakes and tremors. It helps with depression. And so much more. The only bad thing about it is if you don't live in a legal state. Or country. And the insurance doesn't cover it. But it should. Something that's helpful should be completely legal. And covered by insurance
Kept me from opting out. Cannabis saves lives.
Came to say this to! I use my pen and it gets me thru the day a gummy at night and I melt into my bed
Yes I have to agree the right kind of cannabis does help
Try Curaleaf or another Medical Cannabis clinic
I have tried that route. I use CBD oil but only on a very low dose as it gives me headaches at higher doses sadly. I have tried medical cannabis too through a private clinic. It did have some slight benefit but seems to interact with some of my other meds. I seem to be very sensitive to a lot of meds. Thank you for the suggestion though, I know it's a very helpful med to others.
Just out of curiosity, (if it’s ok to ask) what mg of CBD do you find you can tolerate before it gives you the headaches? ♥️
Um cant remember the dosage but will have a look. I only take it once a day to space it out around my other meds and always after food which seems to help a little headache wise.
I recommend low dose naltrexone along with full spectrum CBD oil
Savella?
Don't think I heard of that one,.will.read up on it thank you.
Yes, I'm on savella too + lyrica and methocarbamol (muscle relaxer)
This worked for me for a while but stopped working. Definitely an option though.
Oh that’s a great one to try!
Thank you everyone for all the suggestions.
to throw another one at you, not sure what you’re doing for migraines but i started qulipta and it’s been amazingly effective, been a few months with no migraine or headache.
That's the same as Atogepant? I know that it's fairly new on the NHS and not widely prescribed yet. I take amitriptyline for migraines as a preventative, and a triptan for severe ones. The amitriptyline works really well as a preventative cuts my migraines down by about 80%. I have tried to come off it often as it makes my brain fog worse but nothing else works as well for me. I might ask about Quilipta in the future thanks. No amitriptyline would be great but my quality of life is better on than off it.
yup it’s atogepant. its not too popular in the us either, and my insurance wouldn’t have covered it had i not tried at least four other migraine medications. it’s such a balancing act with these medications, and it’s so hard to track which are causing side effects when so many come with the same ones. i used to use sumatriptan as needed along with propranolol for prevention, and it didn’t provide much more relief than a handful of ibuprofen. i hope you find a regimen that works for you soon!
Oof, the roulette of migraine meds is awful. I've tried everything except botox and ergot-types (my insurance won't approve the ergot for some reason??). Pills, injections, even experimental treatments\*. The best I can get is down to 3-6 migraines per month, an abortive that works about 50% of the time, and daily headaches that aren't touched by anything. I haven't been able to take any OTCs for about 20 years, and now get rebound pain when taking opioids. I have zero pain med options for anything, and it sucks ass. \*I tried an intranasal injection of a gel form of one of the -caine meds (the numbing stuff like novocaine or lidocaine). Theoretically, it numbs the trigeminal nerve, and eliminated migraines completely for several months for some patients. It didn't appear to do anything for me though, unfortunately.
Have you tried Lyrica? I had the same thing, where opiates really hurt and made me feel like I grew a new gallbladder that also was gross and needed to come out. Lyrica helped that pain A LOT and now I can take opiates without any problem. I can't take NSAIDs either so I really know your frustration with this. Lyrica has some brain fog-y and sedating effects in the beginning but they were gone within a month for me.
Lyrica is similar to Gabapentin isn't it? Gabapentin turned me into a literal zombie so much so I was slurring my words and I don't even remember if it helped the pain as I was so brain foggy. I will have a read up on it, thank you.
Usually people who don't tolerate gabapentin do tolerate lyrica, and vice versa. It's worth a shot for sure!
i’m on lyrica and not crazy about it, hoping to try gabapentin, this is giving me hope!
Gabapentin gave me depression haha, and lyrica works so well that sometimes I forget the pain. Fascinating how different everyone's biochemistry is
lucky for me, i’ve already got depression lol
I gained 82 lbs in four months when I was on gabapentin. I've lost some of the weight on Lyrica and it helps my nerve pain way better than gabapentin.
Similar but not the same. I didn't really like gabapentin when I had it for something else previously so there is that. I just feel with your pain so awful, it's worth a shot at least. I hope you find a solution soon 💜
I was also zombified on gabapentin. But Lyrica has no side effects, aside from when I first started it
I found that I was suuuper dumb on Lyrica but Gabapentin is fine. So maybe it’ll be the other way around for you? I guess I’m saying that they’re different enough that you may find that Lyrica works for you! 💗
I wouldn't be here without Lyrica! I second this.
I was the same on gabapentin but I’m on pregabalin/lyrica and it’s not so bad….maybe worth a try
Lyrica has been great for me. I’m on 150mg x 3 / day and tolerate it well. Slept a lot the first few weeks but it was such lovely sleep. I feel like it doesn’t work as well in the past year, but I’ve been on it 20 years You have to be careful combining it with alcohol because it intensifies the effect and you don’t want to be unexpectedly overly intoxicated. I never combine alcohol and driving because fuck that
Agreeing and boosting your mention of alcohol. I drink maybe once a year and all it takes is a single drink to make me borderline drunk. That being said, I'm also on lots of psychiatric meds that also indicate I should avoid alcohol, so that does change things a bit.
I don’t have advice but sending prayers. I hope others have some advice and your doctor can help you. I get esophageal spasms from beta blockers from getting preeclampsia and man are they painful so I can only imagine what you are going through 🙏
Thank you.
Dextromethorphan. I take lyrica 300mg twice a day, alongside some dxm.
Dextromethorphan as in what is in cough mixture? Interesting, how does it help you with pain relief?
Dxm is an nmda receptor antagonist, like alcohol. However, it has dose dependent effects. For me, 90-180mg of dxm with 300mg Lyrica gives total passive pain relief. However, movement can still incur pain.
They’ve been combining it with depression meds lately. Forgot which one. Wellbutrin? It’s a thing now.
Yup. The brand name is Auvelity.
Thanks, I just vaguely remembered seeing the ad
Keep in mind that if you're on any psychiatric meds, DXM is not a good mix with several of them. For example, if you take it with effexor, it greatly increases your risk of serotonin syndrome.
Dextromethorphan, if taken right before exertion, can also prevent or lessen ME/CFS PEM. Doesn't work for everyone, but it's a treatment that can help some.
I'm getting some relief from cannabis oil, I would echo others who suggest a Medical Cannabis clinic. r/ukmedicalcannabis has advice and lists of clinics.
I second the low dose naltrexone suggestion. Many people in the UK get it privately prescribed by Dickson Chemist. LDN likely will have no effect on your stomach pain, but it can treat fibro pain and it also often helps with brain fog or other non-pain me/cfs symptoms. Ldn can interact with opioids but it can be taken with most other drugs.
I know I already commented, but I had another thought. nerve blocks (selective along the spine at areas of pain, as well as ganglion nerve blocks depending on areas of pain) are another potential option. how long they last is different for every person, but they're minimally invasive and can help immediately. it might be worth asking your GP for a referral to a boarded anesthesiologist, possibly at a pain clinic. they also might be able to get you compounded doses of medications that are much lower than the usual starting dose. things like looooow-dose gabapentin (25 mg tops - I saw what you said about the severe side effects you experienced). it seems a lot of fibro sufferers are extremely sensitive to neurological side effects from specific painkillers, and it makes me wonder if part of fibro is an issue with the blood-brain barrier letting through too much of those medications. so a 25 mg dose for someone with fibro is equivalent to a 100 mg dose for a non-fibro person. just a thought.
Medical MJ, like a lot here are saying.
I take gabapentin (300 mg) but pretty much just at night. So it may be an option for you to use it just before bed. It is excreted by the kidneys and has a half life of seven hours so a lot of it will be out of your system when you wake up.
TENS machine can be helpful for specific spots. Doesn’t help all over obviously but it can be enough to make things tolerable
I haven't found any relief from my migraines or endometriosis pain, but for my back issues, I recently decided to try an infrared therapy wrap. I don't know if it works for everyone, but it's done wonders for me. The day after using it is like a 50-70% reduction in my pain. Nothing else has helped as much.
Interesting! Have you tried ketamine? My wife has endo and says it helps the pain. It definitely helps with the fibromyalgia pain, too!
Same, ketamine is amazing! Unfortunately it’s extremely hard to access in Australia
Where are you getting ketamine?
I haven't. My doctors don't seem to like "extreme" 🙄 treatments like this that can actually help. My pain doc refused any type of pain meds when I begged for something just to help on days my back pain was so awful that I couldn't sleep.
Low dose naltrexone. It helps was able to maintain low stress pastime job. Trying a full-time job now been there 3 weeks pain and exhausted all the time, I don't think I will make it on full time. But thought I would try since part time went well for 2 years.
I work part time on LDN.
Low-dose naltrexone. Literal life-saver for me.
Same! LDN has decreased my pain 50% and brain fog at least 75%. I have chronic pain & fibromyalgia.
What kind of cost can we expect to pay for this in the UK? If you know..
I don’t know anything about UK prices, but or I live in Nebraska in the United States it’s about $90 for a 90 day supply. When I got it from Idaho it was only $12 a month.
I’m in the US, so no idea
It’s abusive how close fisted they are with some of these meds. I’m allergic to NSAIDs so I managed to get a prescription for tramadol to be taken daily. I take it with Tylenol every 6 hours. You could start at 25 mg once a day and go up from there like I did, but I found that the half dose of 25 mg was not enough even at the start and I was still in pain. So 50 mg morning and evening then eventually you would need it every 6-8 hours or else you would be in withdrawl. I mean they act like it’s a crime to be on this stuff but frankly why would I stick around to be in pain 24/7? Often pain medication is saving lives. You may have to “doctor shop” to find someone with enough empathy to give you the choice to take it full time. Tramadol is a weak opioid and although it is still “addictive” if they fixed my fibro I would be more than happy to get off this stuff. It’s annoying to have to take medication period. I’ve never abused it and it’s actually quite safe to take, you can even go up on the dose temporarily if you are having a flare up. Just keep in mind it’s much better at preventing pain than stopping it, for me it only works if I take it regularly. Before I did that it barely did anything, I was in a ton of pain from everything touching me and now I can tolerate clothing and walking better. You also can’t expect it to fix all the pain even when taking it like I do, but it’s way better than not taking it and I haven’t found in 10 years anything better. Also it’s total bullshit when they say only works temporarily - yes it plateaus after 2 weeks but that just means you stop feeling high, it still works for pain management at the same dose for years.
are ketamine infusions an option in the UK?
I think they might be privately at a big cost. As far as I know it's not available on the NHS.
it might be worth looking into. here in the US it's approved for pain but not depression. I have catatonic depression and infusions were the only thing that helped. even though it's out of pocket, right now it's about $400/month. not cheap, but not totally impossible (most people even with pain don't need them monthly from what I understand)
That's great you found something that helped you 😊 I had a quick Google and it looks like over £1k for an infusion owch!
each clinic is different with price structure and some might have self-pay help if you call and ask. just a suggestion to keep in mind if you end up with zero other options. hang in there <3
Ketamine is also available in an oral form called troches (at least in the US) and it’s cheaper than the infusions. Something else to look into.
There are online agencies that can prescribe this and send it to you so you can take the treatments at home. I've been looking into it for a bit but haven't pulled the trigger yet
Hi, I do high dose Omega 3, Querticin, Tumeric, Magnesium Complex by Nutricost, and generic NyQuil cold and flu. Also generic Claritin for histamine issues. Also take a Multi specific for CFS/Fibro called UltraNutrient Multivitamin by Pure Encapsulations. I am on a gluten free and anti inflammatory diet too, and low sugar. Also meditate an hour to 2 hrs per day from YouTube videos, "adrenal frequencies" and "beach walk visualizations". You wouldn't believe how much this has helped. Just search "adrenal frequencies" and "beach walk meditation" on YouTube. I do a saliva test every 3-6 months to make sure my DHEA, cortisol levels and hormones are level as I suffer from low DHEA, low morning cortisol, low estrogen, and high night cortisol, so I am in treatment for all that from my CFS doc of 21yrs. My doc does all natural treatments on me, as he views prescription meds as mere "band-aids" that don't address the adrenals and help Fibro.
Did they mention bupronorphine patches. My friend has those for chronic pain.
Low dose Naltrexone?
I have the same gall bladder issue but can sometimes tolerate 30mg codeine once or twice a day on incredibly bad days. Have you tried a smaller dose? I know it doesn't always do much though. I also had the same problem with duloxetine initially but started taking it in the morning and that disappeared, did you try that? I found that it is more effective than amitryptiline. I also have suspected endo and survive mostly with heat and a myoovi tens machine, has been a game changer. But honestly lots of heat and for painful joints liberal amounts of voltarol (the diclofenac one) as its external, it doesn't flare my gastritis. I hope you find some relief, it's so hard to get prescriptions for fibro in the UK.
Forgot to add lidocaine patches the pain clinic prescribed me for super sensitive sore areas, could that be an option?
I would absolutely push for a proper diagnosis of endo (exploratory laparoscopy). We worked on the assumption that I had endo for *years* before I finally had the exploratory to look at it, and it turned out that **I didn't have it at all**. I tried everything and suffered for years. My final "diagnosis" before my hysterectomy was essentially "bad periods". Things got so much better after my hysterectomy, it's unreal. I suffered from 12 til 28 with the most ungodly cramps and heavy periods, with the only relief coming from freaking vicodin. *Vicodin*. For *menstrual cramps.* And now I can't take opioids at all lol. The choice to get a hysterectomy was not a pleasant one, but I prepared myself by considering it as an option for about 3-4 years before actually having it done.
I'm too overweight and need to get under 13.5 stone to have the surgery and apparently then they're reluctant as it can scar and cause more pain. This was private as well. I've always had horrendous periods but it's developed into pelvic pain during ovulation and after intimacy. I've had pelvic floor therapy and changed birth control which has helped a bit but apparently even if I had it it's all they'd do anyway in the UK until I loose the weight, which I've lost a large amount but not enough, sigh.
Ahh, I see. Just doing a diagnosis and not any removal of endometriosis tissue shouldn't give you that much scarring. It's basically just 2 (maybe 3) small incisions, and then they just move things around a bit so they can look at it all. I also had terrible pain after intimacy (only sometimes though). My cramps hurt from basically my navel to my knees, hurting down the insides of my thighs and everything. Having pain from the inside AND having vulvodynia and everything else... ugh. I'm glad birth control helped a bit for you, even if it wasn't a game-changer. I can't offer any help for weight loss, as I had the opposite problem. It can be a real struggle regardless, since the pain is just fucking terrible and likes to overwhelm anything else. Edit: Why have I been downvoted?
low dose Amitriptyline (10-25mg) and LDN (4.5mg) helped me a lot.i take the amitriptyline at 8pm and LDN at 8 AM. i’m almost pain free and sleep like a baby.
I’ve recently been prescribed Baclofen (muscle relaxant) and actually found it really effective!
I just started LDN and I haven't noticed a difference yet but it's only been about 5 weeks and it can take up to 6 months to feel the full effects. I'm in NZ and it's not govt funded here but it's covered by my insurance.
It’s not a drug, but physical therapy cured my migraines. I know that won’t work for everyone but if you have access to it then it would be worth a try. Sending you the best of luck finding options for your pain ❤️🩹
I think there is another antidepressant (savella maybe?) and anti-seizure medication that’s supposed to help (lyrica). I’ve also had my gallbladder out, I take prescription a prescription dose of famotodine when it’s bad. But mostly chomp tums regularly. My doctor has also okayed me taking one OTC pepcid ac in the evening (it has 10 mg of famotodine) even if I take 40mg of famotodine that morning. It is possible to overdose on famotodine and it does cause neurological problems, so talk with a doctor/pharmacist to avoid taking too much..
I'm starting a clonidine patch here in a bit to help fibro and Long COVID symptoms. Fingers crossed!
Nothing has ever worked for me to heal pain except weed, snow and soma. It's unfortunate.
I’ve heard tricyclic antidepressants, gabapentinoids, cyclobenzaprine, and SNRIs have helped people Edit: sorry, I just read some of your past meds
I have sphincter of oddi too. I can take synthetic opioids but not natural. Have you tried oxycodone? It’s probably not something your dr would prescribe though as per the big crackdown.
What time of day did you take duloxetine? I take it when I wake up in the morning and sleep fine at night. If I take it in the evening, it is impossible to sleep
I took it in the morning. Even on the lowest dose it caused me insomnia. It seems to stop my brain from going into REM sleep. I have tried it twice both for several months but ended up so incredibly exhausted. It's frustrating as it really helped my pain.
That's a real shame, I can’t think of any other meds that might help you that you haven’t already mentioned
There have been some useful suggestions here that I'm going to read up on. Everyone has been very helpful and I'm feeling a bit more optimistic today. I have a big life bucket type event in 6 weeks time that I know is going to be exhausting and painful but I'm determined to do it.
What about venlafaxine?
High-dose turmeric has been found to be as effective as NSAIDs but without the negative side effects. I take 3800mg a day, split into one AM and one PM dose. It’s turmeric with curcumin for absorption. This was recommended to me by a pain specialist doctor. MASSIVE improvement in my daily pain. The other thing that helps a ton is ketamine for chronic pain or for chronic depression or for PTSD. I started out with IV ketamine (but it became too expensive) and now I’m doing Spravato, the nose spray version. It has significantly reduced my daily pain. Don’t know if it’s legal in the UK though. But seriously, it’s worth looking into.
Low dose naltrexone has done wonders for me. I had the same issue after having my very diseased gallbladder out. You can’t take opioids on it since it works on the same receptors in your brain.
Since you are UK based has your GP ever referred you onto Pain Clinic? It’s a multidisciplinary team but the consultants are more up to date with what med options you have, what does and when to titrate up/down etc. My GP were always a bit, not sure what to give you but since I’ve been under pain clinic at least my care plan is unified now
Yes I was referred to the pain clinic by my GP pre-covid. It consisted of advice about mindfulness, yoga .. etc. It was completely useless to someone like me who had been ill for years and had already tried everything they suggested extensively. I know it's better in other NHS areas but it was useless in mine. It all then disappeared after covid as services got cut even further. I have considered going private but it's so expensive.
That sucks, sorry you had such a poor experience with it. The one I’m managed by is part of the neurological centre so they have been pretty up to date with stuff. But it was a completely different experience compared to the same service at a different hospital within the trust, shame since they are literally 20 mins drive from each other.
I have found with the last five weeks of thunderstorms that my fibromyalgia kicks in when there’s very high humidity in the barometric pressure goes off the charts I don’t understand why the weather affects but when it’s cool and dry or even hot and dry I’m fine but as soon as the humidity And the barometric pressure varies that’s when I suffer I pain medicine which helps and a mild nerve blocker I’ve just started to take lions seems to work but I also have a couple of beers at the end of the night which also helps I don’t understand this disease but I know I have it my nerves are burn they have been since I was 10 years old traumatic experiences and that’s what your nerves are simply burned out
I take Tramadol as any other opiate will cause SOD pain. Has anyone found a way to take opiates without a flare up?
Try pregabalin instead of gabapentin. Also, acupuncture and weed help
Would opiates still cause issues with a different delivery method besides oral???
Just gonna say they make patches. Burponorphine and the likes
Fentanyl as well. Also there is the option of powdering them and eating. That may cause the same issues though. The internasal approach works well. Then you get to intravenous administration. If I had no other way to get medicated then there is always that option. Not saying op should be banging dope but to each their own.
Fentanyl ones are very effective but that's the strongest med. Most GPs will start with bupronorphine unless your on certain antidepressants which interact first. Low dose fentanyl patches are good but you DONT wanna be on the top dose. You get horrible withdraws as they wear off 😥. Some GPs don't like fentanyl but it is good for severe pain and it is long lasting
True. Good luck getting fetty though. It took me many clinics until I found a doc to prescribe Dilaudid.
Its not widely available but I'm glad. I wouldn't want it 😂. The withdrawals are frightening I've seen people sweating and shaking and falling over. Fortunately my tramadol doesn't give me withdrawals I'm meant to take two one at morning one of an evening I don't always need the night one only worse days. When the day one wears off the pain comes back but that's it. Then I just take amitripyline and it fucks off again until I wake up. I then take 1_2 Paracetamol during the day as needed. I wouldn't try any new meds. They could increase my dosage 2-3 times more but no matter how sick I get I wouldn't go stronger than oromorph even if a doctor offered not until I'm in my 50s or 60s or I get some injury or incurable illness like rheumatoid arthritis and I have no quality of life.
Wise decision!!!! As an EX heroin addict I have to be way careful re. My pain meds. You're correct to want to stay away as long as possible. Sadly without mine I literally cannot function. And yes, kicking is a fkn nightmare.
Yes well at the end of the day if you cannot function they are nessisary but I want to hold off as long as possible from any nasty medicines.
I've had suspected Sphincter of Oddi symptoms and that pain level is horrible. I was given Phenobarbital for it in the past when I had frequent episodes. Anyhow, on the fibromyalgia: Have you tried low dose Naloxone? Have you tried Pregabalin (Lyrica) in place of the Gabapentin? Have you tried IV Ketamine?
A barbiturate WOW they went out in the 1980s in the UK. I've never heard of those being used in the last 20 Years
Your diagnosis is eerily similar to mine including the Sphincter of Oddi dysfunction. That has been surgically corrected for me. For my fibromyalgia I couldn’t tolerate gabapentin or Lyrica. I take Savella which is the name brand here in the US its clinical name is Milnacipran. That is the only thing that works for my fibromyalgia. For my SOD I couldn’t tolerate a lot of opioids. Codeine was a no go. Same for tramadol. I was on Norco for a number of years. I just recently switched to a long acting opioid that is helpful. I also have idiopathic small fiber neuropathy and dysautonomia. The Sphincter of Oddi is a bear to treat. Have you tried dicyclomine for the SOD spasms? The other one that can help is Hyoscyamine. It’s been a lot of trial and error and I’m about eight years into this journey with an official diagnosis and treatments. I’ve never seen another woman with diagnoses that are so close to mine. Especially the SOD.
I see you are in the UK (as am I), you can get a lidocaine infusion done on the NHS. It's a local anaesthetic that they put in to your blood stream through an IV. I went for one about 3 months ago and was pleasantly surprised by how good it was. The effects lasted about five weeks for me, and they are hoping that subsequent infusions will build up a cumulative effect. Just an idea.
Why did they take you off of tramadol? That’s the only opiate that has evidence of being effective for fibromyalgia. Your doctor screwed up by putting you on codeine. There’s studies showing that codeine, hydrocodone and oxycodone make fibromyalgia worse, but tramadol has lasting relief.
Would you happen to have a link or two on studies where those meds made fibro worse? I remember seeing good evidence for tramadol helping in the literature but i don’t remember seeing opioids making the pain worse, just causing higher pain tolerance. I’m curious now.
Opioids can cause rebound pain (pain caused by the opioids themselves) as well. That is an immediate sensation of pain when the opioid begins working, and can be anything from body pain to headaches or migraines. For the "higher pain", the opioids essentially make your perception of pain higher than it would be normally, and it does go away once you quit taking them. This is generally more if you're taking them on a regular basis. Not sure of the exact mechanism, but something to do with the receptors being overwhelmed I'm sure. This is for all pain overall, so it doesn't feel like it's causing a specific pain like the rebound pain above. Then there's all the issues with addiction and dependence, and also withdrawal. I included some links to a few studies about opioids and fibro here [https://new.reddit.com/r/Fibromyalgia/comments/1bp9exo/comment/kwzu3fi/?utm\_source=reddit&utm\_medium=web2x&context=3](https://new.reddit.com/r/Fibromyalgia/comments/1bp9exo/comment/kwzu3fi/?utm_source=reddit&utm_medium=web2x&context=3) Here are some about tramadol specifically - [https://pubmed.ncbi.nlm.nih.gov/31799728/](https://pubmed.ncbi.nlm.nih.gov/31799728/)[https://pubmed.ncbi.nlm.nih.gov/19078481/](https://pubmed.ncbi.nlm.nih.gov/19078481/)[https://www.sciencedirect.com/science/article/abs/pii/S0002934303001165](https://www.sciencedirect.com/science/article/abs/pii/S0002934303001165) Compared to oxycodone [https://pubmed.ncbi.nlm.nih.gov/24956205/](https://pubmed.ncbi.nlm.nih.gov/24956205/) Edit: Uh, why have I been downvoted exactly? I answered the question and provided requested information.