How do you survive with chronic pain?
December 30, 2016 10:43 PM   Subscribe

What resources do you use? Background: I am a young career professional (aged 26). I am passionate about my job but have serious back pain pretty much 24/7, as of the age of 20. Doctors have no idea what is wrong, and weed vicodin etc are fun but barely touch the pain.

Neither does physical therapy (because I'm still working? Do I really need to abstain from sitting for... months? I do the exercises but am still in pain 24/7... but have fantasies of going and living on a farm or something, for a few moths - I've actually quit my job for a few months at a time before to try to recover, but never had any luck ). It's hip pain and it's absolutely constant, grinding, and miserable. Tips from those with a similar background would be appreciated.

I'm interested in open-ended information on this topic. I am prepared to take drastic measures to cure my pain - which is nigh-on unbearable. If I can't cure it, I'm prepared to go on disability. But I can't quite believe it's necessary. Isn't there anyone who has recovered from this? I can't believe in this day and age that there isn't any solution?

Are there forums I can join that would point me the right way? Specific doctors that would help? (MeMail is fine!). Thanks!
posted by benadryl to Human Relations (41 answers total) 14 users marked this as a favorite
what kind of doctors have you seen? have you had MRIs of the area(s) in question? my chronic hip pain is from the deterioration of the labrum such that it can't be repaired, but cortisone shots have made a huge difference. same for my L5 herniation and C4-T1. other related issues are being treated with nerve blocks.

in addition to whatever orthopedists you're seeing you should find specifically a pain management specialist, if you haven't already done so. mine has literally saved my life.
posted by poffin boffin at 11:01 PM on December 30, 2016 [8 favorites]

My partner has chronic, indescribable pain ( CRPS, going on almost 20 years now). Her options right now are ketamine therapy and biofeedback. The former seems promising and worth exploring. The second is well researched but understandably, it can been annoying to be told that something in your head can control pain.

She has a spinal cord stimulator that has enabled her to work. Seconding finding a pain management specialist—someone that knows your full story can be helpful and necessary for disability paperwork and insurance clusterfucks.

One other thing that has helped is having short term disability insurance for periods when the pain is to great to work. I know that doesn't apply to your situation right now, but it's helped my ladyfriend so I'm throwing it out there.
posted by the thorn bushes have roses at 11:11 PM on December 30, 2016 [1 favorite]

Hey poffin boffin, yes I have had an MRI, PET, and X-Ray, all normal. My ass and back tissue is just messed up I guess? - Tight and foreshortened? Even if I sit up, I feel a click in my back. It feels good to click it, but the pain doesn't stop. And my ass and thighs hurt. Just sitting feels like when you're doing higher than the highest setting weights in the gym. Opening my thigh outward causes a super satisfying click, but it doesn't help the pain in my ass, which is super constant. Does anyone know what this is?
posted by benadryl at 11:12 PM on December 30, 2016

A friend had a life changing experience with the pain clinic at Cleveland Clinic. It is a full-time program for that lasts 3-4 weeks for people with chronic pain that hasn't responded to the usual treatment. It sounds like there are still some reasonable things for you try at home but if you reach the point where you are ready to do something more drastic, you might consider finding out more about it.
posted by metahawk at 11:45 PM on December 30, 2016 [1 favorite]


I have chronic lower back pain. At its worst I was only sleeping 3 hours a night because PAIN!, and my dreams were full of lower back pain.

Things that have helped me quite a lot:

- Seeing a physiotherapist once a week or every second week for manipulation, ultrasound, dry needling etc;

- Seeing a remedial massage therapist regularly (every week or every second week);

- Microwaveable heat packs filled with wheat - heat helps your muscles relax and also increases blood flow to the area, which helps;

- Panadol Osteo (slow-release paracetamol/acetaminophen) - 2 tablets, 3 times every day;

- Try to break up your prolonged sitting with standing, walking, lying down as much as possible. Prolonged sitting = BAD lower back pain. Ideally stand up every 30 minutes, even if only for a minute.

You may also want to look into Serotonin and norepinephrine reuptake inhibitors (SNRIs): these help many people with chronic pain. It doesn't mean you're Depressed! It's to do with how the brain plays a role in chronic pain.

Note that there is lots of evidence of SNRIs helping people with chronic pain, and no evidence of Serotonin-specific reuptake inhibitors (SSRIs) helping people with chronic pain. (Source: pain specialist doctor at a chronic pain clinic, as well as other Drs.)
posted by Sockpuppets 'R' Us at 11:53 PM on December 30, 2016 [2 favorites]

The pain clinic I saw told me to read this book, which was written by some of the worlds leading chronic pain researchers, and I found it helpful - I think you might too.

It explains the many different physical, hormonal, and psychological components that make up the pain experience,

and how to manage them.

I've linked to the publishers website, but it's also available on Amazon etc etc.
posted by Sockpuppets 'R' Us at 11:58 PM on December 30, 2016

Sorry to threadshit: I've taken SNRIs in the past, Celexa et al - but it's too severe for that, it's more like if you had a terrible burn or something and it wouldn't heal. Does massage help? I do foam rolling a couple times a week, walk about 1 hr per day, use hot water bottles a couple times a week.
posted by benadryl at 12:06 AM on December 31, 2016

Have you had any professional massages since this started happening? Did they help at all for any length of time? Did the masseuse have any advice?

What position do you sleep in at night? Have you tried varying it?

(I apologize if any of that seems obvious, but it's stuff that helped my partner a lot when he was suffering from severe lower back pain that his doctor couldn't figure out.)
posted by waffleriot at 12:07 AM on December 31, 2016

No, totally - I sleep on my stomach and I suspect a good masseuse would be helpful. Did that help get the pain gone?
posted by benadryl at 12:10 AM on December 31, 2016

For moderate chronic pain from tendinopathy, I had very good results with electroacupuncture done weekly for a while, then biweekly, over a year and a half, in my ankle and wrist. The wrist pain was controlled for that whole time (after the first month or so), until I reinjured it. That particular ankle pain has been adequately quieted long-term. (I'd be doing it again, except I think it requires really focused and regular treatment, and I've since developed several additional issues that have needed attention - just haven't really been able to keep up or pay for treatment for all of them. I was initially very resistant to the idea, which was suggested after about a month of normal physiotherapy. I thought I'd just humour the PT, and it ended up helping so much.) A TENS unit is my next step for home treatment. Still researching models. Meanwhile, I take strong NSAIDs (which only help a bit). I have prescriptions for other stuff that I'm holding off on.

Some resources:

Mechanisms of Acupuncture–Electroacupuncture on Persistent Pain.

Different effects of transcutaneous electric nerve stimulation and electroacupuncture at ST36–ST37 on the cerebral cortex.

Single-blinded, randomised preliminary study evaluating the effects of 2 Hz electroacupuncture for postoperative pain in patients with total knee arthroplasty

But you're saying Vicodin isn't touching it? 2nd a pain clinic.

(Have you had a blood panel by a rheumatologist? Has anyone tested you for HLA B27? It's an antigen that's related to a form of spinal arthritis that can affect younger people. Has bursitis been excluded for hip and buttock pain?)
posted by cotton dress sock at 12:15 AM on December 31, 2016

I don't have anything with rheumatoid arthristis (got bloodwork done), but have thought about getting a tens machine. Bursitis is just a pocket of blood injuring tissue no? And yes I've taken huge doses of vicodin before (blush blush) for unrelated reasons to this, they don't touch the pain even a bit. I'm properly injured (I guess? But surely olympic atheletes and such see worse?). Isn't there anything that can be done to fix muscle tissue? Really asking here.
posted by benadryl at 12:18 AM on December 31, 2016

Bursitis can happen for a bunch of reasons (including bacterial infection! In which case it'd have to be physically cleaned out and treated with antibiotics. Or injected with a corticosteroid).
posted by cotton dress sock at 12:23 AM on December 31, 2016

Have you seen a rheumatologist and had bloodwork done in addition to the imaging? Has anybody mentioned your sacroiliac joint or pirformis muscle?

If you haven't gone down this road yet, I would definitely venture that way. Bloodwork can show whether you have markers for certain kinds of arthritis, how bad your inflammation level is and at least possibly give you more of an answer than DUH. PAIN MGT!

Incidentally, have you been keeping a pain diary of what makes it worse, better, kinds of pain, etc? If not, start. Note weather, positions, stretching/not stretching, kinds of shoes, NSAIDS, anything stronger, ice, heat, etc.

Upon preview, I didn't have the genetic markers for hereditary arthritis, but had all the clinical signs. I was diagnosed with Ankylosing Spondylitis (this presents differently in women than men in case you start looking around) in July. My rheum told me that if I responded to a trial of Humira, it would be definitive. It definitely made a difference. Had a ton of side effects, but it made the pain go away.
posted by dancinglamb at 12:27 AM on December 31, 2016 [2 favorites]

Damn, I'm so sorry dancinglamb. I am pretty sure whatever it is is literally related to some random muscle in my ass spasming. When I read about ankylosing spondylitis it honestly seemed accurate for the first 2+ years, but 2 doctors said it was not that post MRI and blood tests. And it's not even back pain it's just terrible ass pain, like imagine if your right leg was too short to sit on so your right back kept cracking and your right ass cheek and thigh felt like stewed tenderloin and no matter how much you massaged it every link was "too tight" somehow. It definitely is piriformis and (according to one doc) straightup sacroiliac joint dysfunction. Does that help? Those are muscles in the ass area. The PT said it was literally every ass muscle, not just those. A top back doctor said it was also probably just every ass muscle, but they recommended PT which doesn't really capture the pain. I roll on a tennis ball a lot and foam roll. I still feel 100% pain all the time though, worsened by sitting and in my inner thigh (tight), front pelvis, whole ass/whatever. Sorry for saying ass so many times, that's just what it is.

Cottondressock, if it was bursitis is there a way to convey that? It definitely feels inflamed beyond all reason - but is there any treatment I can ask for that would help? Thanks!
posted by benadryl at 12:39 AM on December 31, 2016

Cottondressock, if it was bursitis is there a way to convey that? It definitely feels inflamed beyond all reason - but is there any treatment I can ask for that would help? Thanks!

They'd need to diagnose it first, which they could do with a blood test, and/or by sucking out some fluid from the affected joint and sending it to a lab. But it sounds like they probably checked that out! (Also sounds like that's not it.) I wish I had an answer that would help :(

posted by cotton dress sock at 12:54 AM on December 31, 2016

Earlier this year I went on a hunt for the miracle pain relieving pot strain. Didn't find it. At my last neuro appointment he suggested gabapenten and I decided to give it a try. I am on the lowest dose 900mg a day. It has helped so much I can't believe it. I still have bad breakthrough days of pain in my legs, left hip/groin area/butt/shins so I take flexaril and stretch that pira formas mother fucker over and over, heating pads, and if I have to, I will take Percocet.

So I find regular stretching the hips and butt, flexaril, heating pad and gabapenten has helped me the most. Also walking even if don't want to and it kinda hurts. I go at least for a ten minute stroll. Good luck.
posted by cairnoflore at 12:57 AM on December 31, 2016

To answer your question: what happened with my partner was after an hour-long massage, the masseuse told him to start sleeping on his side with a pillow between his legs. He did and the pain cleared up completely within a few days.

This was much shorter-term than the pain you're experiencing - he'd only been laid up for a month or so, not years - but getting a really good professional massage and trying out different sleeping positions might be useful.
posted by waffleriot at 1:03 AM on December 31, 2016 [2 favorites]

Can you get a standing desk for work?
posted by spitbull at 1:13 AM on December 31, 2016 [1 favorite]

Your other question on this issue makes it really sound like sciatica (which I can't believe wouldn't have been caught by now, so maybe not), maybe bc of piriformis syndrome? (FYI, I am just googling now, only writing in case someone else might pick up what I'm throwing down and make sense of it.)
posted by cotton dress sock at 1:29 AM on December 31, 2016

I would go back to the rheumatologist you went to (or another one if you didn't like that one) and insist on getting checked out again.

Don't take no for an answer - research, research, research and have a list of questions ready (I always forget when I'm in the office and then curse myself when I get to the car afterward). ;)

As I said, Ankylosing Spondylitis doesn't necessarily present mid-spine in females, and that average diagnosis time is something like 6-8+ years because it presents so differently in everybody. I suspect mine has probably been going on for at least 10. *sigh*

One other thing you might want to try (I've been meaning to give it a shot, myself) is going to one of those floating tanks. They're billed as sensory deprivation, but you don't have to close yourself in. There's a ton of epsom salt in the water, so you float weightlessly. From what I understand, it's wonderful for people with joint pain. Good luck!

Memail me if I can help!

My situation presented with endless Achilles tendon issues; a partial tear on the left side (four surgeries with that one), and a progressive issue on the right (2 surgeries on that one), and then every other freaking issue with my wrists, shoulder, back, hips, yada yada...

I had one rheum tell me it was just slow healing with the Achilles (it was two YEARS of wearing a boot) and the rest was regular arthritis. I wasn't willing to accept it at 46yo and said enough was enough. I'm an RN (well, was - haven't worked in three years) and was able to see from the blood work that my inflammation levels were crazy high. Push came to shove and we tried sulfasalazine (I was allergic to it), then went onto Humira (it worked but with every side effect possible), Enbrel (it did nothing), and now I just started Remicade. I'm still doing ibuprofen, vitamin D, Flexeril and Percocet. Better living through chemistry, my friend!

posted by dancinglamb at 3:00 AM on December 31, 2016 [1 favorite]

This is not a recommendation. It is purely anecdotal. An L4/L5 herniation combined with bone spurs left me with apparently permanently damaged and painful sciatic nerves. After prescriptions, physical therapy and hobbling about I stumbled (quite literally) upon something that works for me. A glass or two of a nice Chardonnay is now my healing balm. Your mileage may vary...
posted by jim in austin at 5:31 AM on December 31, 2016

Sure sounds like sciatica, which I have on and off. You need to get to a good sports doctor as well as a pain management person.

The pain management is critical but you need to figure out why the hell this is happening, hence a sports doctor. You need a diagnosis (but it sure sounds like sciatica) to figure out what to do. I've done pills and sports massage and stretches and PT and acupuncture (that helped a bit), but the greatest thing for me has been yoga. It gently aligns you and stretches that shit out.

Check out this Yoga with Adrienne video specifically for lower back and sciatic (butt) pain. Go slowly, try it once and see if you don't feel a difference within 24 hours/
posted by yes I said yes I will Yes at 5:35 AM on December 31, 2016 [2 favorites]

Severe ass pain, you say? That's the SiJs. If it radiated down one leg and got worse through the day, then, yeah, sciatica. But pain at rest (sleep), improved with movement is a hallmark of AS.

I got really lucky that it only took about half a year to get dx'd. But that was because I wasn't able to move, at all, in the mornings. I'm hla-b27 negative, no family history, very late onset. But I've been dealing with AS for the last 6 1/2 years.

You really need to get to a rheumatologist that's all over this. There are many protocols for MRIs. Some are better at detecting mechanical stuff, others at soft tissue damage, and most importantly some detecting inflammation. Physical damage in AS can take years to appear, but the pain severe. If they aren't looking for obscure inflammation, it will get missed. This has very little to do with RA.

The other thing is to try to give as objective a history as possible to the smallest detail. Write it down. Try not to emphasise the pain beyond functioning, location, time, duration, type. Don't go to the 1-10 scale, let them ask you that. I eventually got so tired of giving my history that I wrote it all up, reviewed it with my GP and used it as crib notes for so many appointments when doctors, and insurance wanted the story from the beginning.

I'm on disability now. Pain is a constant. I've been through pain management specialists. Long-acting opiates are a part of my daily routine, along with biologics and steroids. I've also done long trials of SNRIs without benefit.

As an aside, I used to work with the life sciences industry, a fair amount dealing with the development of large molecule regulatory approvals processes. I never expected to need them.

Best of luck to you. Memail me if you'd like to chat.
posted by michswiss at 6:03 AM on December 31, 2016 [2 favorites]

This book changed my life:
The Trigger Point Therapy Workbook

I still have some pain, but it's much more manageable since I learned the techniques in there. It takes a little time and effort to get good at, but otherwise costs very little so might be worth a shot, and if nothing else after reading the book you will have a better understanding of your anatomy which will help in your conversations with doctors, physical therapists, etc.

Very best of luck to you — I hope you find some relief soon.
posted by rafaella gabriela sarsaparilla at 6:22 AM on December 31, 2016 [1 favorite]

So if your doctor is saying this is Sacroiliac joint dysfunction that would lead to muscle and ligament problems... Especially if the joint is hyper mobile.
Have you done any research/ reading on this? I reccomend reading as much as you can from reputable sources. Know your anatomy.
Are you on every day anti inflammatory es?
Have you tried using an SI belt? Get a PT person to position it correctly.
How many different PT places have you been to? I have found huge variation in effectiveness between different offices.
Definitely stretches, rolling, deep tissue massage. You could try Pilates.
In extreme cases a surgeon can do a SI joint fusion.
With severe pain you often need a combination of meds rather than one med: so SNRI plus anti inflammatory plus gabapentin for example. Keep a pain diary.
Get s sit stand desk.
posted by SyraCarol at 6:54 AM on December 31, 2016 [1 favorite]

(because I'm still working? Do I really need to abstain from sitting for... months?

No, for years. Start now now now.

sorry, I'm just having reflex anxiety from memories and from the very idea of continuing to sit down with the kind of back pain that is caused or worsened by sitting.

You don't have to try to make your employer buy you anything [*] if you're not sure it'll definitely help or if you think they wouldn't - just stack your monitor on a bunch of bales of printer paper to get it to eye level, get a cheap stool to lean on (at the right height, it's not sitting, just resting), see how it goes.

Your issues are definitely different from mine if your MRI was normal -- although several doctors initially told me that any amount of herniations and whatnot WERE normal for everyone because the human spine is a pile of garbage and that therefore a big herniation and a couple of big bulges above and below, in exactly the spot and on the same side where my agonizing pain was, meant nothing. So if they summarized the findings for you but didn't show you the full report, get hold of the report and double check for yourself. If there is any chance they were wrong about this, there is a chance the exercises you have been dutifully doing are making it worse.

- get somebody to put a needle full of something in somewhere. Seriously. If it really is only muscle spasms, it's far beyond the point where you can fix it yourself or with massage. & yes, while you're waiting for more specialist appointments, get you some electricity to experiment with. The cheap machines you can get off amazon are not as effective or as deeply penetrating as having a professional do it for you but if nothing else they give a nice weird distracting sensation.

[*]If it does help, go ahead and demand they buy you a standing desk (nicely, don't make them mad, but all I had to do was stammer something about how I didn't want to go through all the paperwork of getting an official disability accommodation but if it would make it easier for them, I could, and the legal tremors of the magical words made everybody fall down in their haste to tell me OF COURSE. ) & thus I have not sat to work since two jobs and four years ago. After the first couple years I started sitting for hour-long meetings in the conference room so I wouldn't have to explain myself to new people, but it wasn't a great idea.

posted by queenofbithynia at 7:30 AM on December 31, 2016

Sorry for the double comment but I really meant to say: did I miss it or are you not on any muscle relaxants? or did you try them and they didn't work? I would have thought that Flexeril would have been the first things they'd have given you (that's what the urgent care guy gave me long before I cried my way to an MRI and they all assumed it was a muscle spasm.)

If you have not yet tried them, a word about muscle relaxants: Soma (Carisoprodol) and Flexeril (Cyclobenzaprine) are not interchangeable, try them both alternately. Soma has some pain-dulling powers and Flexeril, at least for me, doesn't. Soma does fuck all for my lower back pain (but that's because my lower back pain isn't caused by muscle issues) but is the only thing on earth that helps my shoulder knots. Effects lessen over time like everything else but if it works even once it is a magic miracle. Doctors can be dicks about prescribing it because it is a fun drug, but less so than Vicodin. Flexeril doesn't do much for pain except that it knocks you out hard -- if you can't sleep because of the pain, Flexeril will help even it doesn't fix you.
posted by queenofbithynia at 7:38 AM on December 31, 2016 [1 favorite]

I've had a variety of back troubles for my adult life, although not nearly as bad as yours.

You might try a chiropractor. Some of them will tell you they'll cure all sorts of random problems (which I don't believe), but for back pain they can be very helpful. They can also recommend stretches and exercises.

Second, Pilates may be helpful, or yoga. I got to the point a year ago that sleep became very difficult due to back pain. I took up Pilates with a private instructor for a while. They were able to work around my various injuries to help me build up strength and start moving again. A really good instructor knows a lot about body mechanics, similar to a physical therapist.

Thirdly, if sitting is a problem your work could get a desk converter so you can stand, like this:

desk converter

If they won't cough up the money you could possibly get one for yourself. Many companies will spend a little money on ergonomics to avoid any possibility of lawsuits though. I work with a lot of people who use standing desk converters. I see more of them all the time.

Lastly, you could try sitting on a yoga ball. They allow you to roll your body around while you're sitting, which might help. You'd want to start using the yoga ball for short periods and build up to using one all day if it's helping:

yoga ball

yoga ball office chair

I hope you can get some relief!
posted by DrumsIntheDeep at 8:16 AM on December 31, 2016 [1 favorite]

I came in to suggest Pilates and yoga. I have a friend with chronic pain and she said "reformer pilates" was the best thing she'd ever done. Also, a relative of mine has chronic, constant pain and her neurosurgeon recommended pilates over physical therapy. Cheaper and more effective.

While I don't have the chronic pain issue you have, I do have the hip clicking thing, sometimes it's very painful and it feels like something pops/snaps. I've been going to a sports medicine clinic where they've been working with me on hip strength and it's been really effective. No more popping or clicking, no more pain. Do you have a sports medicine clinic in your area? I saw PTs for years but the only ones who have been truly effective have been the sports medicine PTs, who work with athletes and have a lot of experience with intensive rehab.
posted by onecircleaday at 8:25 AM on December 31, 2016 [2 favorites]

If you can get to thd Steadman Clinic in Colorado by any means necessary. A friend had similar issues, had labrum surgery told she'd have to live with it, years of pt, etc etc. They figured out the actual cause, did a nerve release surgery and she's fine now basically. Your insurance will likely pay for it if you make a strong case. That clinic is where the Olympians go and why they have such good outcomes.
posted by fshgrl at 9:17 AM on December 31, 2016 [1 favorite]

At age 23 I developed similar severe hip pain that I thought was an overuse injury from soccer or running in crappy shoes. As a grad student I was sitting (or trying to sit) for long periods of time, which was at times impossible. The pain migrated into my butt and down one leg. The MRI confirmed a 2 ruptured and 2 herniated discs in my lumbar and sacral spine.

My orthopedist and sports medicine PT both told me you can't draw reliable conclusions about chronic pain from MRI and X-Ray images alone. Some people with awful looking spines live pain-free with no limits. There are people with spines straight out of a medical textbook that experience constant life-altering nerve pain.

I have a messed up spine, but my orthopedist advised against surgical interventions such as disc shaving, disc replacement, spinal fusion, etc.

We started with PT, and a set of epidural steroid injections. It worked. I was able to escape the pain completely most of the time. For the first 6 years after my treatment, I'd have an attack and have to rest in bed for 3-4 days. For the last 2 years, I've been basically pain-free with no attacks. From my own experience, I think my back pain is a feedback loop of inflammation causing nerve impingement, which causes pain, distorts my posture, resulting in further nerve impingement and inflammation. Avoiding pain means avoiding impingement or inflammation triggers. I can lift heavy things with the right technique, and I ride thousands of miles a year on my bike. Here are some things that have helped:
  • I lost about 25-30 lbs. Knees feel better, and my back definitely feels better. This was not exactly intentional, but knowing what I know now, it should have been!
  • I don't run or jog except short distances to play with my young nephews
  • I avoid strenuous twisting (e.g. golf, baseball, etc.)
  • Early on, swimming was extremely helpful. When I started swimming regularly, I had to improve my core (abs, obliques and spinal erectors) because I had excessive spinal mobility and twisting in the water was actually causing some pain. At the time, my mom bought me a waterproof MP3 player. It works very well, and it makes laps MUCH more enjoyable than just counting tiles.
  • From years of trial and error, the critical thing for me is to keep my calves, hamstrings, and glutes stretched. Especially my hamstrings. I highly recommend this book to give you a set of exercises. I credit it as one of the main reasons that I have not had an attack in 2 years.
Chronic pain is the worst. I wish you a speedy recovery. MeMail me if there's anything I can do to help.
posted by KevCed at 11:11 AM on December 31, 2016 [1 favorite]

As another tool (but probably not a cure unto itself), try some exercises from the Egoscue Method. They are mostly gentle stretches aimed at correcting postural problems, which can lead to pain in all sorts of places. They have clinics in cities throughout the US, or you can get the book and DIY. (A nice thing is that most of the exercises can be done at home without any special equipment - you need a floor and a wall, and sometimes a pillow or chair.)

A lot of chronic pain seems to be a feedback loop involving posture, as KevCed said, and the more places you can interrupt that loop, the better the outcome overall. Good luck!

I learned about the Egoscue exercises right here on AskMe and they have been way more helpful for me than any suggestions from various GPs. My problems are relatively mild, so I've never had to see any specialists, but I've been impressed at the difference - and I'm emphatically part of mainstream medical science.
posted by Quietgal at 11:26 AM on December 31, 2016 [1 favorite]

Pilates can be amazing, but I highly recommend doing 1:1 sessions with a very observant trainer and try to practice near a mirror so you can correct. If you don't have proper form, you can make things worse. It took 8 months with a trainer before I could do reformer classes properly.

Something I can't recommend enough is the Ghokale Method. The book is really helpful, and got me out of a really bad place but working with an instructor took it to the next level and got me into a good place. Ghokale is about retraining how we sit, stand, walk, and lie down. If you learn how to do Ghokale's "glide walk", I suspect it will reduce or even eliminate your symptoms.

I am genuinely confused as to why doctors, even physical therapists, don't consider posture more when patients report pain. Poor posture means you are constantly overtaxing some muscles, while others get chronic underuse and stop functioning properly. That will cause significant pain! After doing Pilates and Ghokale, I discovered the exercises I did in Physical Therapy were done with very poor form, not actually targeting the muscles that needed it (simlar to you, I needed to build glutes). The PTs did not even notice I was shifting the work to my hips and back.
posted by yorick at 1:02 PM on December 31, 2016 [1 favorite]

You guys are the best! Thank you!
posted by benadryl at 3:45 PM on December 31, 2016

I had chronic back pain, not nearly as bad as yours, until I stopped sleeping on my stomach. Try sleeping on your side, as someone mentioned above, with pillows between your knees. If you absolutely have to sleep on your stomach try putting a pillow under your stomach so your back isn't arching. I do hope something you've read here today will bring relief.
posted by mareli at 5:50 PM on December 31, 2016

This will be an odd suggestion, but...

I have had lower back pain and hip/butt pain chronically since I was 14. It felt like a bizarre cramping that made me find joy in the idea of pulling my leg off, or stab myself in the butt for relief. I suspect there were two different incidents that caused the pain, one when 14 and one in my 30's (I'll never do damn yoga again), centered around my sacroiliac.

I have spent periods of my life without sleep because of it. It was a weird crazy-making pain. What I finally found to help were belly dance moves. It seems to massage and stretch parts of my hip/butt from the inside. It was that relief I craved. For a year or so, I would do about 5 minutes of moves every night before bed. If the pain came back and woke me, I would just get up and do it again. At this point, I haven't done them in about a year or so, with the exception of 3 or 4 times. It changed everything.
posted by Vaike at 6:54 PM on December 31, 2016 [1 favorite]

As someone with chronic pain, some neuromuscular and some nerve, I nth the suggestion for gabapentin and muscle relaxers. I actually take Robaxin, 1000mg 3x/day, and it really works for me. It doesn't make me sleepy and it works pretty well on my muscle issues. Gabapentin is also extremely good, as everyone else said.
posted by gloraelin at 9:33 PM on December 31, 2016

EVERYTHING that KevCed said, x10. I had a multiple herniated disc injury that resulted in me laying in bed for months. I had the nerve pain radiating down my hips to the feet, some days I couldn't go to the bathroom, etc. I refused surgical options and decided to take matters into my own hands. Basically, if you want to get serious about this, you'll need about 2 years of rehab, as though it's your full time after work job.

1. Ditch the chair. Get a kneeling chair, or a standing desk. Or, what works for me is a recliner and a laptop on my tummy. Seriously. Get that pressure off your spine, and MOVE every 30 min for 1 min. Set a timer on your phone. Seriously.

2. Foam roller becomes your best friend. Have one at home, and one at the office. Foam roll your ITB, hamstrings, calves, every day.

3. Swim every day. This was by far the most life changing thing - 10 minutes a day, no excuses. Find a heated pool, tread water, do some water jogging, do a few laps. It'll kill the first few times. Then you'll feel it working.

4. Massage with an amazing therapist who will work your trigger points and release your pain.

5. No jogging, no lifting anything heavy, nothing that will put strain on you. 6 years since my initial pain and injury, I can lift up to 25kg of random crap (suitcases etc) but right now, make your limit 5kg.

6. Every day, finish your day with 2 very relaxed poses for a few min each. One is the frog, the other - just lay on the ground with your legs up against a wall, and then open them wide. With both poses, you're not trying to stretch or strain - let gravity do the work, relax, breathe, for 2 minutes each. This will release your hip flexors, butt muscles, and ITB.

7. Get serious about pain relief rituals. If you're taking painkillers or muscle relaxants, eat food regularly, take some stool softeners, and take them ON TIME. Every day. Before the pain kicks in. This is the only way you'll be able to commit to rehab work. If tiger balm or voltaren gel works for you, apply it daily. Have a nightcap to relax your muscles before bed.

8. Body pillow between your legs when you sleep if on your side.

9. Yoga, pilates, and physio - all the time. Regularly.

10. Be kind to yourself and understand your pain and tolerance levels for every day activities. The best way to get yourself in a cycle of misery is to overdo it.

Good luck! You can do this. I was on painkillers and muscle relaxants for 2 years. By 3 years, I was painkiller free. It's now been 6 years - I've been pregnant, and carry my 12 kg baby and 10kg of stroller + bag at the same time, with ease. It took years, literally. But I'm pain-free.
posted by shazzam! at 3:49 AM on January 1, 2017 [2 favorites]

I'm another woman with AS. I began having symptoms much like you describe at 16 and was finally diagnosed at 32. All of my bloodwork (Sed, CRP, HLA-B27) is and has always been negative. But in my 30s I finally began showing changes in my SI joints that were visible on an x-ray. Humira has changed my life. I am now a functional human being who can work a full time job and exercise and have a life and, yes, sit down.

I hope you don't have AS. AS fucking sucks. But it really sounds like you might. My advice is to find a rheumatologist who finished their residency recently and is therefore more like to know that AS presents differently in women and that plenty of people with AS are HLA-B27 negative.
posted by hydropsyche at 6:07 AM on January 1, 2017 [3 favorites]

My daughter has chronic pain from neuropathy and I can't offer any suggestions on how to fix the pain, but I thought I'd share a couple of things that helped.

She vacilates between wanting coolness or warmness, so sometimes we go to the pool and sometimes we get in the hot tub my amazing brother bought for her.

This is far out there, but the thing that has helped the most was getting her a hooded hair dryer so she could direct warm air wherever it hurt. She can control the temperature and it has a timer on it so if she falls asleep it turns off. I figured it out after watching her have a hard time keeping a heating pad on just the right spot.

Another thing that has helped tremendously is art therapy. Talking about it didn't really do anything for her, but art therapy has been a big help for her in terms of giving her the skills to manage the pain. I go with her and participate and it's helped me as well. It's not just for kids.

She uses a weighted blanket which helps.

For medicine, she takes Nortryptaline daily and Tramadol PRN.

On another note, I have severe depression and PTSD and have been reading about Ketamine Infusions and it turns out they are also used for pain.

Best of luck.

posted by orsonet at 7:50 AM on January 1, 2017

The book Back Sense talks about chronic pain caused by stress and muscle tension. Backed by some very smart people with some good pedigrees (NYU, Harvard).

It's worth checking out with an open mind, especially since you already know there's nothing physically "wrong".
posted by christiehawk at 2:25 PM on January 5, 2017 [1 favorite]

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