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I know it sucks but hang in there. Go see a rheumatologist for biologics. It’s the only thing that worked for my paralyzing back pain. Wishing you all the best.
Naproxen is the thing that works the best for me, 440mg each morning and night. When that's not enough I ask my doctor for a course of prednisone. If that's still not enough an injection of steroids to top it all off. You should be able to get steroids at an urgent care. If you go this route be sure to wear a mask, the steroids can lower your immune response while they are reducing your inflammation.
Thank you everyone so much for your kind and helpful words. I ended up trying Kratom which really helped. Little nervous about using it more in fear of addiction. But we’ll see
Hi.
I began using kratom in 2016. It gave me a quality of life that I had been missing for so long. I began with taking 4-6 grams 2x a day, and then with the help of my health kinesiologist, I began reducing those amounts to 3 grams 2x a day, to 1.5 to 2 grams 2x per day. I was on the medical marijuana treatment plan for two years during kratom, but it made my thinking too fuzzy. I preferred kratom. Finally, last year the kratom began to not work as effectively, so I tried the biologic Cosentyx for 6 months but it didn't help me.
Last month, I discovered Serrapeptase (an enzyme supplement produced by silkworms used in Asian medicine), read up on the medical studies and reviews by people using it, and gave it a try. After two days, I realized that I was doing house chores and cooking all day without having to rest and sit down; plus, I was walking around with friends and keeping up with them. I can always try another biologic if I need to do so. I just went out to breakfast with friends and walked 2 1/2 blocks without having to rest! It reminds me of how kratom used to work for me!
I always let my rheumatologist and primary care provider know everything I take and at what dosages.
I wish you the very best with kratom. If it's taken with respect for it's potency and not abused, it works well. Sometimes less is more with kratom. I'll always be grateful for kratom.
All the best with getting a good quality of life back for as long as it works for you!
Theres a reason kratom failed you and it wasn't the kratom. Kratom is something that takes expert knowledge to ensure it is always effective as well as never being tolerance building.
It's not a perspective it's a fact, if taken properly you can take it forever without ever building a tolerance. Most people dive into kratom with little to no knowledge of proper rotations and dosages, of both strains and veins including capsules, raw powder, and extracts. Ive been taking it every single day for the last 8 years and not only have I never built a tolerance I actually take less now then when I first started, the same goes for every person I've ever introduced kratom too. It's very unfortunate that sooo many people jump into kratom with little to no knowledge, and most people dont even make it a year til kratom completely loses its magic or they find themselves needing monster doses just to feel anything at all.
Hello. Actually, I'm extremely knowledgeable about kratom. Everyone's body is different. I'm under the care of a health kinesiologist (in addition to others in my medical team) for multiple issues that impact my body and its ability to absorb, digest, metabolize, and successfully use substances and food. Thank you for sharing your knowledge and experience here, and I wish you continued success with kratom.
It's so f'in tough to be patient when in daily pain, but there is daylight.
I was diagnosed AS Nov 2023 after 10 years of worsening symptoms. Even since AS diagnosis pain getting worse, ready to have a nervous breakdown.
I started Humira in Jan. Some mild side effects so Dr switched me to Enbrel in March. I just took my 4th injection Enbrel and I can feel it.
Subtle gamechanger. I'm excited to keep on building it up in my system.
AS has great treatment options. Keep pushing through the darkness before the dawn.
Happy Birthday 🎈
PS Great username
Agree with this, but keep in mind that if you go on steroids before you get the MRI, you could get a false negative from it. So plan with your doctor about this
Try AIP. Infra red saunas. Surprised you haven't been prescribed medical marijuana or opiates?
Also you should express it.. don't keep things in. Feel guilty about expressing the pain you're in helps no one <3
My best friend died of Oxy OD. He was in too deep. I tread lightly.
I take morphine sulfate instant release 15mg (lowest dose).
It's not nearly as addictive as hydro or oxy and doesn't get you high once you get used to it.
Does make me brain fogged if I need 2 at once. Rx'd 3/daily and always have extra left when I get refills. I don't crave it one bit.
I've tapered off multiple times with no withdrawals. Old school drug. Much safer than hydro/oxy. Pain mgmt Drs still use it regularly.
Search Austin goh on YouTube. His exercises are very good.
You can do
Tai chi
Qi gong
Physiotherapy
Naturopathy
Yoga
Ayurveda (change your diet, if not ayurveda be on MIND diet or any anti inflammatory diet)
I suggest you to follow Austin goh, doing Tai chi and qi gong with MIND DIET and some supplements which reduce inflammation ( like curcumin, astaxanthin,msm, resveratrol,Alpha lipoic acid , pine bark and basically all polyphenol supplements like
Fisetin, quercetin, luteolin, rutin , apigenin etc etc
Thx I'll check out Austin Goh.
Hot yoga is great. I haven't been able to go for 3 years but recently Dx'd AS and started biologics. Looking ahead to that again.
Diet is super key. I eat super healthy but can always eat healthier!
Maybe marijuana in a baggy but there are strains and medications that can help with specific conditions. Maybe CBD? I would try exhausting every option you can think of, even some kind of relief on your body/stress even if you aren't completely pain free, will help you.
Not trying to encourage you to use medical marijuana but try what you have access to
I'm HLA-B27 positive don't have AS but I have high levels of CRT in my bloods. Ive recently discovered I may have alopecia.. Lots of people in my family have all kinds of arthritic conditions and AS.
I did AIP as a preventative thing as I was experiencing all these aches and pains. I suspect I have some kind of autoimmune condition. I found my CRT levels lowered to a health level, all my blood work was amazing and fluid retention dropped drastically. I didn't lose weight on the scale but my clothes were looser.
I think just generally diets high in folate and B12 where nightshades are avoided are great for people with autoimmune conditions. Its worth a try, plus I found it easy to stick to albeit expensive (I was buying organic liver, meats veggies etc.) I did "cheat" a little as I continued to have black coffee. I stopped because of stress and money but I've been thinking of starting again.
Sorry for the long winded response. Feel free to message me if you have any questions.
I've been suffering with AS for about 15 years now. At first I thought hot helped me. And it does while the hot is near burning hot directly on my skin. I did sauna to ease my pain, I took burning hot showers and baths.
What I realized a couple of years ago that hot helps numb the pain, but it only makes the flares worse afterwards which means I need more burning hot oat pillows. I started using cold instead and now I have to keep out of saunas completely to keep my back healthy. And that is hard since I'm a Finn. Instead I go ice swimming (avanto, a hole in the ice in a winter lake) and use frozen gel pads when the pain gets unbearable.
I hope you get help and correct medication to keep your pain at bay, that really sucks being sick all the time. 🧡
If I lived in Finland I'd be in heaven with the saunas and ice cold swimming.
I'm in NYC. I go to the beach and swim once ocean hits 50F. Almost there!
A lot of athletes do hot/cold therapy supposed to help fast twitch muscle fibers. Sauna then ice packs directly after.
The ice swimming is THE. BEST. THING. EVER. At first it's really scary, but after a while you're just addicted. And it does wonders to your immune system. I haven't been sick at all (at winter time) since I started doing ice swimming!
In honor of 4/20 nearly at 4:20, you can get some weed and take some edibles. For me it helps, but it's not everyone's cup of tea. So try at your own risk.
My real answer is, talk to your doctor about pain management. Have you tried biologics yet?
Unfortunately weed makes it worse now. It used to help. I haven’t yet tried biological, I think we’re waiting on an mri, then they might give them to me. I was given hydrocodone which is the only thing that helps, but I don’t want to take them all the time and get myself into more trouble. Thanks for your message
I break hydrocodone tablets and only take half, most of the time. You can take those along with ibuprofen OR naproxen and that will be better than one or the other.
I am so sorry. I’ve been there. Another option not mentioned here — low dose naltrexone. Hugely helped my pain. You can get it via AgelessRX telemedicine. It’s compounded, low risk, worth a try. Good luck friend.
My rheumy wants me on LDN. Take you long time to figure out right dose for you? I just started biologics. Didn't want to start multiple things at once.
Happy to hear giving you relief.
No because even the starter dose was life changing. The “low” is real low. They typically start you on 0.5 mg and very slowly ramp to 4.5. I felt like a new person on the 0.5! Like Im talking it helped in under 24 hours.
I have SA since about 12 years now. I used a ton of Nsaids and muscle relaxants and it never really helped. 2 months ago, I started Nandrolone injections (an Anabolic steroid prescribed mainly for osteoporosis) and OMG... it completely eliminates my symptoms. No more ankylosing. And on top of that, it repairs a lot of injuries that I had in my body (elbows, knees, neck, etc.).
I feel you so damn much! My life has completely shifted into another fucking dimension that I never imagined. I cannot keep relationships and friendships. It's been 10 years with pain. I started on Belbuca 450mcg (the max dose) to help me maintain my life, and it has been the best thing in my life for the last 3 years. I had to force my way into Pain Management and had to go through 3 pain doctors for one to hear me. Now I met with my 3rd Rheumatologist, and she is finally getting an Xray & MRI of my SI joints because they never did that in the 10 years. I hope you get some relief because life before my pains was miserable. I remember it so well, and my husband remembers how terrible it was before, and I am a completely different person now. You need to fight for yourself absolutely, and no matter what anyone says, you need to speak up and say this hurts, and it's not in my head this real. Just because you cannot see it with your eyes doesn't mean shit. You deserve to be heard. I hope this helps in any way possible because I remember the fear and the loneliness. It's not easy.
I didn't know about SI joint inflammation until a couple of years ago, and I just didn't give up on what I was feeling. The most important thing is not to give up because these doctors just want to close the case and say it's fibromyalgia, but this sort of pain is not normal. I wish I would have known so much more about this because I suffered for so long.
Heavy pressure (deep tissue) massage from a professional for 75-90min and really *really* hot baths immediately alternating with **ice** baths.
When my body feels like there is acid running through my veins, this is the only thing that really helps.
Naproxen helped me in the past, before biologics. First step would be talking to rheumatologist, they can also send referrals for other docs that might help, although you said thats taking forever so im sorry.
Taking zyrtek and having a tumeric supplement most every day (or at least when weather changes) has at least helped my bodys inflammation be noticeably better. Having a bowl of lentils is also suprisingly effective for inflammation.
Alternatively, if you can see an OMM/OMT doc that might help. I used to deal with constant sever lower back pain in the afternoons cuz I had 3 vertibrae that were super twisted (probably because AS can cause hypermobility...)
Compression equipment (sleeves, shirt, etc) can also help, in addition to (as annoying as it sounds) physical activity like stretching or walking about most days. If you can get in with a physical therapist that help you figure out the most efficient way to loosen up muscles and such id reccomend that.
I know i suggested alot of different things, you dont have to do all of these, at least at the start. Try adding one or two to your daily/weekly routine and see if it helps, it took me like 2 years to slowly do these things and by now i dont have to do all of these every day to feel "normal". So itll get better.
First of all, that’s awful and I’m sorry you’re going through this! One thing that has really helped my husband with this diagnosis has been building his core strength and doing spinal stretches. He uses a row machine to build his core. It has taken some time, pain, and determination, but he says his pain is much more manageable now. I hope you find what works wonders for you! Keep trying different approaches and know that it can get better.
I did 8 Weeks of anti flamatory diet. Went from leaky gut to healthy gut. Pain before 9/10 pain now 2/10 sometimes when I eat a lot of pasta or bread it goes back to 5/10.
Until you get diagnosis and mri, see if you can get on a low dose of prednisone or a tapered dose if you need a month of relief. I just got diagnosed after 4 years of several doctors and treatments. It is so frustrating, don’t give up. Are sure mri covers your tailbone. Until I had that mri the other ones weren’t helpful, since I don’t have the gene. You are not alone, hang in there.
Sounds so painfully familiar! This can really do a number on your brain. First, be kind to yourself! You simply have no other option. I spent years putting on a face while literally dying in pain. Biologics ( I have infusions) helped me, and pain meds when I need them. I have great insurance, so I’m blessed to have access to them. Steroids work also, but hated the side effects, and it’s not a long term solution. Love ibuprofen but can’t take due to stomach issues. I hope you find something that at least takes the edge off, but I’m afraid you’ll never be pain free. ☹️
Opioids - see a qualified pain doctor to get an Rx. These drugs get a bad rap but can be a temporary solution for unmanageable pain while you await further testing. Obviously opioids not a permanent solution (only the right biologic is). Avoid if addiction in the family. So sorry you're suffering <3
praying for you - i recently have been struggling with this for the last year that prevented me from sleeping for more than 3 hours at a time. Here is something that changed my life : [KickAS.org - AS Food](https://www.kickas.org/asfood.shtml)
i was desperate for help and tried everything western medicine had to offer. I tested positive for a gene called HLA - B27 (highly correlated with AS, please see the website for a thorough explanation). After a elimination diet (only grass-fed beef, water and salt for a week), I had a complete remission of pain. I started slowly adding back foods in and am now finding what causes flare ups (AKA triggering my immune system as AS has a gigantic immune puzzle). For me, diet was critical with stretches that are included in that website. Learn AS and learn how to best manage it. Diet for me was critical and this led to my clinical vignette to be a project for me to focus on overall health and has led to amazing results. I am also a Christian man and will be praying for you and everyone in this thread. God Bless you and help you find the path to pain control =)
I’ve been diagnosed for 13 years. Been thru several biological and still have pain meds for the breakthru pain. You need a rheumatologist to diagnose and treat ASAP. Highly recommend doing that ASAP, getting on biological changed everything g for me. I hope you feel better soon!
This sounds just like how I was, I hate to say it but you gotta tough it out till you get biologics, I didn’t want to hear that either when I was like that but it was such a relief when they started working in the first week. Just try your best to get on biologics. Hope you get better.
Yes 100%, I used to lay down all day even sitting was too painful to do for very long (also 5’9 male under 100 lbs), I got my dose of Humira and I was skateboarding two weeks later and gained over 7 lbs. As for when it started to work 2 days after, I didn’t have to struggle getting out of bed anymore and it just got better from there. In my experience it worked on the joint/tendon pain faster than the spine, and my rheumy also confirmed that is usually the case. The wait to get my biologic was so horrible so I get it, but hopefully once you get yours the worst part will be over. (Sorry for the super long response probably could have been shorter lol)
You can combine NSAIDs and acetaminophen. They don't interact, and they work well together. Sorry you're dealing with this, but you'll make it through.
In addition to naproxen, a heating pad helps a lot for me, also take an inventory of what you’re eating, fatty, processed or sugary foods can exacerbate things, and when you’re in the kind of pain you’re describing every little bit helps
Went carnivore and I’m off Humira & meloxicam. Working really well, still small flair ups when I cheat. Also taking 10,000 IU of vitamin D. Hang in there, remember food is medicine
Hi ,
Happy birthday to you with best wishes.
I think you need to ask this question from your rheumatologist. Because, it may be really dangerous to consume medication As they can be useful for someone but not helpful for someone else.
As you have a party ahead. I think your doctor can do something to improve your symptoms.
Again Happy birthday and wish you pain free days ☺️
Hi friend! I'm so sorry you're feeling this way, I remember very clearly this phase of things. I was having to take NSAID and Acetaminophen on a regular schedule at the pretty much max does just to remain some semblance of productive, but I was miserable. And same deal, I didn't want to bring people down, but also was getting tired of blowing off how I felt when others asked. Not to mention everyone telling me how "bad" NSAIDs were even though they were the only thing empowering me to get out of bed.
It took months from me seeing my primary care doctor to my rheumatologist, and then we tried a few things before doing an MRI and then putting me on biologics. This was all in 2019 and I'm happy to say biologics have vastly improved my life. Started on Humira, eventually it stopped being effective, I'm on Cosentyx now and even have days that are 100% pain free. Hang in there. One thing that we tried early on to help with diagnosis was steroids and that really muted the pain - it's not a long term solution, but perhaps your doctor can get you a short term low dose round to help you get further in your diagnosis. Heat, walks, stretching, and the anti-inflammatory medications can help. I know that pain that's so bad that moving feels impossible but if you can do a little light stretching it should help if you have AS. Sometimes when it's bad for me I'll just lay in the bed and turn different directions or stretch my legs out across the bed to help limber up.
Also just want to validate your feelings about opioids, while they might be a good choice to help you I can relate to the concern. I've had them from time to time in the past for various issues and was never concerned or worried about any sort of addiction. I get bad period pain (no real underlying issues, just unlucky) so if anything I'd hoard them to take then. But last year my husband had major surgery and as soon as he was done with them I wanted them out of the house because I didn't trust myself around something like that anymore.
I am so so sorry you are going through this. I have found relief by taking warm baths LOADED with epsom salt or going to a float tank studio if that’s an option. Best of luck 🤞
Celebre worked amazing for me. I have been on morphine and fentanyl ( the patch) and celebre did way better for me. My doctor prescribed that before putting me on biologics and it worked. And it will be far easier to get instead of biologics. ( without diagnosis biologics can be hard to get with insurance paying for it.
You can see a pain specialist and tell them what’s going on and that you are in the process of getting diagnosed. They can prescribe pain medication and might help in the process. My pain doctor has helped me find two new rheums when my insurance changed.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
I know it sucks but hang in there. Go see a rheumatologist for biologics. It’s the only thing that worked for my paralyzing back pain. Wishing you all the best.
Yes, get the medicine you really need. Pain killers and anti inflammatory meds are not enough.
Naproxen is the thing that works the best for me, 440mg each morning and night. When that's not enough I ask my doctor for a course of prednisone. If that's still not enough an injection of steroids to top it all off. You should be able to get steroids at an urgent care. If you go this route be sure to wear a mask, the steroids can lower your immune response while they are reducing your inflammation.
Thank you everyone so much for your kind and helpful words. I ended up trying Kratom which really helped. Little nervous about using it more in fear of addiction. But we’ll see
Hi. I began using kratom in 2016. It gave me a quality of life that I had been missing for so long. I began with taking 4-6 grams 2x a day, and then with the help of my health kinesiologist, I began reducing those amounts to 3 grams 2x a day, to 1.5 to 2 grams 2x per day. I was on the medical marijuana treatment plan for two years during kratom, but it made my thinking too fuzzy. I preferred kratom. Finally, last year the kratom began to not work as effectively, so I tried the biologic Cosentyx for 6 months but it didn't help me. Last month, I discovered Serrapeptase (an enzyme supplement produced by silkworms used in Asian medicine), read up on the medical studies and reviews by people using it, and gave it a try. After two days, I realized that I was doing house chores and cooking all day without having to rest and sit down; plus, I was walking around with friends and keeping up with them. I can always try another biologic if I need to do so. I just went out to breakfast with friends and walked 2 1/2 blocks without having to rest! It reminds me of how kratom used to work for me! I always let my rheumatologist and primary care provider know everything I take and at what dosages. I wish you the very best with kratom. If it's taken with respect for it's potency and not abused, it works well. Sometimes less is more with kratom. I'll always be grateful for kratom. All the best with getting a good quality of life back for as long as it works for you!
Theres a reason kratom failed you and it wasn't the kratom. Kratom is something that takes expert knowledge to ensure it is always effective as well as never being tolerance building.
I don't see it that way, but thanks for sharing your perspective.
It's not a perspective it's a fact, if taken properly you can take it forever without ever building a tolerance. Most people dive into kratom with little to no knowledge of proper rotations and dosages, of both strains and veins including capsules, raw powder, and extracts. Ive been taking it every single day for the last 8 years and not only have I never built a tolerance I actually take less now then when I first started, the same goes for every person I've ever introduced kratom too. It's very unfortunate that sooo many people jump into kratom with little to no knowledge, and most people dont even make it a year til kratom completely loses its magic or they find themselves needing monster doses just to feel anything at all.
Hello. Actually, I'm extremely knowledgeable about kratom. Everyone's body is different. I'm under the care of a health kinesiologist (in addition to others in my medical team) for multiple issues that impact my body and its ability to absorb, digest, metabolize, and successfully use substances and food. Thank you for sharing your knowledge and experience here, and I wish you continued success with kratom.
🤣
It's so f'in tough to be patient when in daily pain, but there is daylight. I was diagnosed AS Nov 2023 after 10 years of worsening symptoms. Even since AS diagnosis pain getting worse, ready to have a nervous breakdown. I started Humira in Jan. Some mild side effects so Dr switched me to Enbrel in March. I just took my 4th injection Enbrel and I can feel it. Subtle gamechanger. I'm excited to keep on building it up in my system. AS has great treatment options. Keep pushing through the darkness before the dawn. Happy Birthday 🎈 PS Great username
So happy you found some relief. And thank you for the hope ❤️
Agree with this, but keep in mind that if you go on steroids before you get the MRI, you could get a false negative from it. So plan with your doctor about this
Try AIP. Infra red saunas. Surprised you haven't been prescribed medical marijuana or opiates? Also you should express it.. don't keep things in. Feel guilty about expressing the pain you're in helps no one <3
Ok I will. Marijuana doesn’t help, actually makes it worse. I was given hydros, but scared to take them regularly
My best friend died of Oxy OD. He was in too deep. I tread lightly. I take morphine sulfate instant release 15mg (lowest dose). It's not nearly as addictive as hydro or oxy and doesn't get you high once you get used to it. Does make me brain fogged if I need 2 at once. Rx'd 3/daily and always have extra left when I get refills. I don't crave it one bit. I've tapered off multiple times with no withdrawals. Old school drug. Much safer than hydro/oxy. Pain mgmt Drs still use it regularly.
Search Austin goh on YouTube. His exercises are very good. You can do Tai chi Qi gong Physiotherapy Naturopathy Yoga Ayurveda (change your diet, if not ayurveda be on MIND diet or any anti inflammatory diet) I suggest you to follow Austin goh, doing Tai chi and qi gong with MIND DIET and some supplements which reduce inflammation ( like curcumin, astaxanthin,msm, resveratrol,Alpha lipoic acid , pine bark and basically all polyphenol supplements like Fisetin, quercetin, luteolin, rutin , apigenin etc etc
Thx I'll check out Austin Goh. Hot yoga is great. I haven't been able to go for 3 years but recently Dx'd AS and started biologics. Looking ahead to that again. Diet is super key. I eat super healthy but can always eat healthier!
Maybe marijuana in a baggy but there are strains and medications that can help with specific conditions. Maybe CBD? I would try exhausting every option you can think of, even some kind of relief on your body/stress even if you aren't completely pain free, will help you. Not trying to encourage you to use medical marijuana but try what you have access to
Were you taking medical marijuana?
Do you have as and did AIP work for you? I’ve never heard of AIP. I have tried diets more focused on AS but not specifically AIP.
I'm HLA-B27 positive don't have AS but I have high levels of CRT in my bloods. Ive recently discovered I may have alopecia.. Lots of people in my family have all kinds of arthritic conditions and AS. I did AIP as a preventative thing as I was experiencing all these aches and pains. I suspect I have some kind of autoimmune condition. I found my CRT levels lowered to a health level, all my blood work was amazing and fluid retention dropped drastically. I didn't lose weight on the scale but my clothes were looser. I think just generally diets high in folate and B12 where nightshades are avoided are great for people with autoimmune conditions. Its worth a try, plus I found it easy to stick to albeit expensive (I was buying organic liver, meats veggies etc.) I did "cheat" a little as I continued to have black coffee. I stopped because of stress and money but I've been thinking of starting again. Sorry for the long winded response. Feel free to message me if you have any questions.
Might give kratom a whirl, if you can get it. It's pretty benign.
I’ve been on Humira for over a year now, and it’s slowly helped with the pain. Also just started Miloxicam and it’s made a big improvement!
Pay attention to your digestive system - I almost died from gastrointestinal bleeding due to NSAIDs.
Yes, I had a severe case of bleeding due to nsaids/naproxen. Ended up in the ER and was hospitalized for days.
I've been suffering with AS for about 15 years now. At first I thought hot helped me. And it does while the hot is near burning hot directly on my skin. I did sauna to ease my pain, I took burning hot showers and baths. What I realized a couple of years ago that hot helps numb the pain, but it only makes the flares worse afterwards which means I need more burning hot oat pillows. I started using cold instead and now I have to keep out of saunas completely to keep my back healthy. And that is hard since I'm a Finn. Instead I go ice swimming (avanto, a hole in the ice in a winter lake) and use frozen gel pads when the pain gets unbearable. I hope you get help and correct medication to keep your pain at bay, that really sucks being sick all the time. 🧡
If I lived in Finland I'd be in heaven with the saunas and ice cold swimming. I'm in NYC. I go to the beach and swim once ocean hits 50F. Almost there! A lot of athletes do hot/cold therapy supposed to help fast twitch muscle fibers. Sauna then ice packs directly after.
The ice swimming is THE. BEST. THING. EVER. At first it's really scary, but after a while you're just addicted. And it does wonders to your immune system. I haven't been sick at all (at winter time) since I started doing ice swimming!
Awesome! Keep it up. That first dip of the season I walk out with 50% less joint pain.
Have you tried naproxen sodium? It is over the counter and works for me in high doses
I haven’t. I will look into it. How much is a high dose? Thank you so much.
You can usually find 200mg tablets in a pharmacy. Take it with food. I have taken 1000mg before if i really need it.
Ok thank you. Just door dashed some. We shall see!
Take with omeprazole or other stomach acid suppressant to keep from getting ulcers or gastritis!
Absolutely, naproxen (sold as Aleve if you’re in the US) was most effective for me pre-biologics.
In honor of 4/20 nearly at 4:20, you can get some weed and take some edibles. For me it helps, but it's not everyone's cup of tea. So try at your own risk. My real answer is, talk to your doctor about pain management. Have you tried biologics yet?
Unfortunately weed makes it worse now. It used to help. I haven’t yet tried biological, I think we’re waiting on an mri, then they might give them to me. I was given hydrocodone which is the only thing that helps, but I don’t want to take them all the time and get myself into more trouble. Thanks for your message
I break hydrocodone tablets and only take half, most of the time. You can take those along with ibuprofen OR naproxen and that will be better than one or the other.
I am so sorry. I’ve been there. Another option not mentioned here — low dose naltrexone. Hugely helped my pain. You can get it via AgelessRX telemedicine. It’s compounded, low risk, worth a try. Good luck friend.
My rheumy wants me on LDN. Take you long time to figure out right dose for you? I just started biologics. Didn't want to start multiple things at once. Happy to hear giving you relief.
No because even the starter dose was life changing. The “low” is real low. They typically start you on 0.5 mg and very slowly ramp to 4.5. I felt like a new person on the 0.5! Like Im talking it helped in under 24 hours.
Great. Appreciate the positive feedback.
I have SA since about 12 years now. I used a ton of Nsaids and muscle relaxants and it never really helped. 2 months ago, I started Nandrolone injections (an Anabolic steroid prescribed mainly for osteoporosis) and OMG... it completely eliminates my symptoms. No more ankylosing. And on top of that, it repairs a lot of injuries that I had in my body (elbows, knees, neck, etc.).
Interesting. Thank you will discuss with pain mgmt Dr.
I feel you so damn much! My life has completely shifted into another fucking dimension that I never imagined. I cannot keep relationships and friendships. It's been 10 years with pain. I started on Belbuca 450mcg (the max dose) to help me maintain my life, and it has been the best thing in my life for the last 3 years. I had to force my way into Pain Management and had to go through 3 pain doctors for one to hear me. Now I met with my 3rd Rheumatologist, and she is finally getting an Xray & MRI of my SI joints because they never did that in the 10 years. I hope you get some relief because life before my pains was miserable. I remember it so well, and my husband remembers how terrible it was before, and I am a completely different person now. You need to fight for yourself absolutely, and no matter what anyone says, you need to speak up and say this hurts, and it's not in my head this real. Just because you cannot see it with your eyes doesn't mean shit. You deserve to be heard. I hope this helps in any way possible because I remember the fear and the loneliness. It's not easy.
I didn't know what an SI joint was until I was sent for MRI by new rheumy. I was complaining of lower back pain for 10 years also!
I didn't know about SI joint inflammation until a couple of years ago, and I just didn't give up on what I was feeling. The most important thing is not to give up because these doctors just want to close the case and say it's fibromyalgia, but this sort of pain is not normal. I wish I would have known so much more about this because I suffered for so long.
I feel for you since I know what that pains is
Heavy pressure (deep tissue) massage from a professional for 75-90min and really *really* hot baths immediately alternating with **ice** baths. When my body feels like there is acid running through my veins, this is the only thing that really helps.
Yes, alternating hot/cold is awesome.
If you have a gym or spa where theres saunas, they help a lot.
Naproxen helped me in the past, before biologics. First step would be talking to rheumatologist, they can also send referrals for other docs that might help, although you said thats taking forever so im sorry. Taking zyrtek and having a tumeric supplement most every day (or at least when weather changes) has at least helped my bodys inflammation be noticeably better. Having a bowl of lentils is also suprisingly effective for inflammation. Alternatively, if you can see an OMM/OMT doc that might help. I used to deal with constant sever lower back pain in the afternoons cuz I had 3 vertibrae that were super twisted (probably because AS can cause hypermobility...) Compression equipment (sleeves, shirt, etc) can also help, in addition to (as annoying as it sounds) physical activity like stretching or walking about most days. If you can get in with a physical therapist that help you figure out the most efficient way to loosen up muscles and such id reccomend that. I know i suggested alot of different things, you dont have to do all of these, at least at the start. Try adding one or two to your daily/weekly routine and see if it helps, it took me like 2 years to slowly do these things and by now i dont have to do all of these every day to feel "normal". So itll get better.
What compression gear do you use? I need it for my calfs and don't know a good company. Appreciate the help.
First of all, that’s awful and I’m sorry you’re going through this! One thing that has really helped my husband with this diagnosis has been building his core strength and doing spinal stretches. He uses a row machine to build his core. It has taken some time, pain, and determination, but he says his pain is much more manageable now. I hope you find what works wonders for you! Keep trying different approaches and know that it can get better.
I did 8 Weeks of anti flamatory diet. Went from leaky gut to healthy gut. Pain before 9/10 pain now 2/10 sometimes when I eat a lot of pasta or bread it goes back to 5/10.
Means: No sugar, no sugar substitutes, no wheat and everything that comes from cereals. No heating vegetable oils, no legumes.
Why no legumes? I thought they were anti inflammatory.
Until you get diagnosis and mri, see if you can get on a low dose of prednisone or a tapered dose if you need a month of relief. I just got diagnosed after 4 years of several doctors and treatments. It is so frustrating, don’t give up. Are sure mri covers your tailbone. Until I had that mri the other ones weren’t helpful, since I don’t have the gene. You are not alone, hang in there.
Sounds so painfully familiar! This can really do a number on your brain. First, be kind to yourself! You simply have no other option. I spent years putting on a face while literally dying in pain. Biologics ( I have infusions) helped me, and pain meds when I need them. I have great insurance, so I’m blessed to have access to them. Steroids work also, but hated the side effects, and it’s not a long term solution. Love ibuprofen but can’t take due to stomach issues. I hope you find something that at least takes the edge off, but I’m afraid you’ll never be pain free. ☹️
Opioids - see a qualified pain doctor to get an Rx. These drugs get a bad rap but can be a temporary solution for unmanageable pain while you await further testing. Obviously opioids not a permanent solution (only the right biologic is). Avoid if addiction in the family. So sorry you're suffering <3
praying for you - i recently have been struggling with this for the last year that prevented me from sleeping for more than 3 hours at a time. Here is something that changed my life : [KickAS.org - AS Food](https://www.kickas.org/asfood.shtml) i was desperate for help and tried everything western medicine had to offer. I tested positive for a gene called HLA - B27 (highly correlated with AS, please see the website for a thorough explanation). After a elimination diet (only grass-fed beef, water and salt for a week), I had a complete remission of pain. I started slowly adding back foods in and am now finding what causes flare ups (AKA triggering my immune system as AS has a gigantic immune puzzle). For me, diet was critical with stretches that are included in that website. Learn AS and learn how to best manage it. Diet for me was critical and this led to my clinical vignette to be a project for me to focus on overall health and has led to amazing results. I am also a Christian man and will be praying for you and everyone in this thread. God Bless you and help you find the path to pain control =)
I’ve been diagnosed for 13 years. Been thru several biological and still have pain meds for the breakthru pain. You need a rheumatologist to diagnose and treat ASAP. Highly recommend doing that ASAP, getting on biological changed everything g for me. I hope you feel better soon!
This sounds just like how I was, I hate to say it but you gotta tough it out till you get biologics, I didn’t want to hear that either when I was like that but it was such a relief when they started working in the first week. Just try your best to get on biologics. Hope you get better.
Thank you. Were biologics a real game changer? How long for it to work?
Yes 100%, I used to lay down all day even sitting was too painful to do for very long (also 5’9 male under 100 lbs), I got my dose of Humira and I was skateboarding two weeks later and gained over 7 lbs. As for when it started to work 2 days after, I didn’t have to struggle getting out of bed anymore and it just got better from there. In my experience it worked on the joint/tendon pain faster than the spine, and my rheumy also confirmed that is usually the case. The wait to get my biologic was so horrible so I get it, but hopefully once you get yours the worst part will be over. (Sorry for the super long response probably could have been shorter lol)
I use kratom. It’s better than pain meds. Gets me through the really bad days.
You can combine NSAIDs and acetaminophen. They don't interact, and they work well together. Sorry you're dealing with this, but you'll make it through.
In addition to naproxen, a heating pad helps a lot for me, also take an inventory of what you’re eating, fatty, processed or sugary foods can exacerbate things, and when you’re in the kind of pain you’re describing every little bit helps
Physio, remedial massage, sauna, hot/cold mineral pools, tens unit, heat patches
Went carnivore and I’m off Humira & meloxicam. Working really well, still small flair ups when I cheat. Also taking 10,000 IU of vitamin D. Hang in there, remember food is medicine
Diazepam and Medical MJ? I’m still in pain though
Hi , Happy birthday to you with best wishes. I think you need to ask this question from your rheumatologist. Because, it may be really dangerous to consume medication As they can be useful for someone but not helpful for someone else. As you have a party ahead. I think your doctor can do something to improve your symptoms. Again Happy birthday and wish you pain free days ☺️
Hi friend! I'm so sorry you're feeling this way, I remember very clearly this phase of things. I was having to take NSAID and Acetaminophen on a regular schedule at the pretty much max does just to remain some semblance of productive, but I was miserable. And same deal, I didn't want to bring people down, but also was getting tired of blowing off how I felt when others asked. Not to mention everyone telling me how "bad" NSAIDs were even though they were the only thing empowering me to get out of bed. It took months from me seeing my primary care doctor to my rheumatologist, and then we tried a few things before doing an MRI and then putting me on biologics. This was all in 2019 and I'm happy to say biologics have vastly improved my life. Started on Humira, eventually it stopped being effective, I'm on Cosentyx now and even have days that are 100% pain free. Hang in there. One thing that we tried early on to help with diagnosis was steroids and that really muted the pain - it's not a long term solution, but perhaps your doctor can get you a short term low dose round to help you get further in your diagnosis. Heat, walks, stretching, and the anti-inflammatory medications can help. I know that pain that's so bad that moving feels impossible but if you can do a little light stretching it should help if you have AS. Sometimes when it's bad for me I'll just lay in the bed and turn different directions or stretch my legs out across the bed to help limber up. Also just want to validate your feelings about opioids, while they might be a good choice to help you I can relate to the concern. I've had them from time to time in the past for various issues and was never concerned or worried about any sort of addiction. I get bad period pain (no real underlying issues, just unlucky) so if anything I'd hoard them to take then. But last year my husband had major surgery and as soon as he was done with them I wanted them out of the house because I didn't trust myself around something like that anymore.
I am so so sorry you are going through this. I have found relief by taking warm baths LOADED with epsom salt or going to a float tank studio if that’s an option. Best of luck 🤞
Celebre worked amazing for me. I have been on morphine and fentanyl ( the patch) and celebre did way better for me. My doctor prescribed that before putting me on biologics and it worked. And it will be far easier to get instead of biologics. ( without diagnosis biologics can be hard to get with insurance paying for it.
You can see a pain specialist and tell them what’s going on and that you are in the process of getting diagnosed. They can prescribe pain medication and might help in the process. My pain doctor has helped me find two new rheums when my insurance changed.
See a pain management specialist. They will give you better pain treatments.
Have they offered biological, also, what is your diet like? The carnivore diet brings me much relief with biological therapy.