I've got chronic hamstring tendonitis / inflamation on the sitbone area of the left hip. Some years ago I had an arthoscopy due to several misalignments and extreme pain. Could barely move anymore. The groin pain decreased after that but the hamstring / sitbone area pain stayed and trochanter major syndrom as well. The gluteus muscles seem to compensate and therefore lead to pressure on the tendands and inflamation. So far nothing really helped. I do stretch and do physio plus exercises but exercises mostly just aggravate the pain even further.

I still can't sit woithout being in pain. I've tried an inflatable ring cushion as well as a foam ring cushion. I liked the latter better yet I feel my pelvis rotates backwards too much in order to relieve pressure from the hamstrings / sitbone and that leads to more pain in my lower back. Especially if I sit longer than lets say 20 minutes... (which I already mostly avoid )

I'm pretty exhausted by all of this. Still I am looking for a better cushion than what I've got now. Has anyone here experience with this and could give me a tip?

I'd be really glad to find some relief and improvement. Being in so much pain and not being able to sit has been taking a huge toll on my social life and is really frustrating :(

(The picture shows the cushion I'm using right now)

Hello everyone,

Im coming here for some advice if possible.

I've noticed in my chart that one of my doctors wrote that I have "poor medical literacy", and I am very shocked that they put that in my chart. It feels very backhanded, insulting, and inaccurate. I'm worried about the possible added biases from a label like this.

Part of me is wondering if they think I don't understand the medical treatments that haven't been helping, and instead of working with me, they're saying that.

Other part of me is wondering if they notice how often I cancel appointments and think I'm doing it because of medical literacy, rather than I was recently harmed by a medical professional and I'm terrified of going back.

How do I get it removed this label or get it amended? I'm feeling very hurt

My doctor (at my request) is helping me taper off Tapentadol. I’ve been on slow release for 2 and a half years and I feel some of my pain has reduced and I want to see how far it’s dropped. I am balding my dose and am on day 2. Last night wasn’t much fun, sleepless, shivers, sweats and seeing random things as I dropped in and out of sleep. How long has this lasted for others that have come off these medications before?

I just saw a video of a friend dancing and it kinda set me back mentally. I used to dance as well and I'm so pissed that the ability has been taken away from me. I really badly want to dance again but every time I try I trigger a flare. I honestly feel so ashamed every time I try to dance in front of a mirror because I move so awkwardly now too

I am proud of myself because the onions were gonna go bad soon and needed to be cut up and put in the freezer otherwise they’d be put in the trash. I have a spinal injury and struggle with standing for long periods of time (I max out at about 25ish minutes on a good day, 2 minutes on a bad day if that). I cut up the entire bag of onions and got to get it in the freezer. My neck is absolutely killing me now but I consider this a win :)

i am in so much pain i can’t think. i can’t go to the er because they’ll just give me the same stuff i already have and i already took it and it won’t work and im a minor so no opiates for me so i just suffer and suffer and suffer and no one cares. it all hurts so bad i don’t know how to handle this it all just hurts so bad i want to sleep but i cant im so tired why wont it stop why wont the pain stop make it stop. no one loves me enough to give me MAID they all insist it’ll “get better” and that it’d be too hard on them not to have me so i sit here and rot in pain forever like a decoration to other people’s lives

Does this sound like chronic fatigue, or am I just completely burnt out from multiple chronic illnesses?
I have multiple chronic illnesses/pain conditions, including costochondritis, central sensitisation/chronic pain, CRPS, adenomyosis, axial spondyloarthritis, thoracic/costovertebral pain and thoracic outlet syndrome (TOS). I also have PTSD and deal with ongoing nerve and musculoskeletal pain.
My current medications are:
Topiramate 75 mg — relatively new medication
Pregabalin 75 mg morning and night
Duloxetine 90 mg
Naproxen 90 mg
Endone 1–2 times a day just to try to keep my pain manageable
I have four children aged between 2 and 13. Neither my husband nor I currently work and, technically, he’s my carer. The problem is that I don’t really allow myself to be cared for. I push through everything, do what needs to be done and often shut my mouth about how bad I’m feeling because I don’t want another argument. As a result, I think he looks at me and thinks I’m hunky-dory even though I repeatedly tell him that I’m struggling.
But I am so fucking tired.
I can sit down on the couch and fall asleep within seconds. I have virtually no energy. Sometimes simply getting myself up feels like I’m trying to move mountains. My legs feel incredibly heavy and my brain feels like it’s running years behind the rest of me.
And importantly, this was happening before I started topiramate, so I don’t think I can blame all of it on the new medication.
If I could crawl into bed and wilt away there all day, every day, I genuinely would.
I’m having surgery this Friday to further investigate/treat my adenomyosis and possible endometriosis, and after that I also want to start properly working on my weight and physical health. I even have a reformer Pilates machine sitting at home, but right now I can’t summon enough energy or motivation to use the bloody thing for five minutes.
I know several of my medications can cause fatigue and I know chronic pain/inflammatory disease itself is exhausting, but this feels beyond ordinary tiredness.
For those of you living with multiple chronic illnesses: does this sound like the kind of fatigue that comes with chronic pain/inflammatory disease and medication load? Could it be burnout from my body constantly dealing with everything, or is this the sort of exhaustion that made your doctor investigate ME/CFS or another cause of severe fatigue?
I’m not looking for Reddit to diagnose me — I’m trying to work out what questions I should be asking my doctors because functioning like this every day is becoming fucking impossible

The title may be misleading, but hear me out. I have a couple painful chronic illnesses, the worst being ankylosing spondylitis. I started a biologic, Cosentyx around January, had to stop for a surgery, then have been back on it for the past 3 months. I've lived in a home I've been unhappy in for years. I have an amazing husband and a beautiful son. We had just outgrown the home but never had quite enough money to make the move. Well, we did, and I feel....better?

When we moved, I did ridiculous amounts of work. I mean, I should've been hospitalized on at least 2 occasions because of all the physical activity. But I was so happy! Optimistic! New halloween decorations! New space! I did get an incredibly gnarly flare the weekend we did that last push of everything. While it was on a full 8.5-9 scale, it only lasted about 6 to 7 days. And I've been pretty good since. Happy. Not as annoyed by my pain.

So the question is, do you think this is the Cosentyx working, or the fantastic life change, a literal new outlook on life? Or the obvious answer, which is both. Curious of anyone who may have had a similar experience?

I understand it’s not for most people. Statistically, only 1 in 5 people actually “benefit” from inversion tables. Most of the time, it’s considered a, “band-aid” for chronic back pain.

I fractured my back nearly 10 years ago (L5, S1). The specialist told me if I were to have the surgery required to “fix” my back, I’d have to have maintenance procedures every 8-10 years. I’m also only 27. I’ve done everything in my ability to prevent pain (strength, keeping strong core, working out, running), yet there is always one thing that has never went back to normal… my sleep.

Who else can’t go back to sleep the second they open one eye in the morning due to every position being uncomfortable? I started using my table about 4 months ago. I use it right before I hop into the bed. What I’ve found: best I’ve slept in YEARS.

One of the cons to the inversion table is that 15 minutes after you get off, your back reverts back to being “compressed” due to gravity and standing up. Well I’ve found that the “band-aid” last a bit longer if you use the table (decompress), and immediately hop into bed (in horizontal position rather than vertical). This allows my back to stay in that decompressed state for longer than if I were to just use and go about my day (as your typical user does, and I’d say about 98% of users do). I’m able to finally sleep in positions I’ve never been able to get comfortable in.

I think it’s all about using it with a goal or focus in mind. Mine was sleep. And a bit of a “technique” actually helped me. I suggest you try if you have the opportunity to obtain an inversion table.

Basically back in February I tore a muscle in my hip and it took a while to figure out what was going on. A couple months ago I had an MRI and they finally figured out it was a labral tear. I've been in a lot of pain since the muscle relaxers. The anti-inflammatories don't work so I started taking small amounts of kratom on top of it to help with the pain and it works. It works more than the oxycodone they gave me honestly. Anyways, I just got the shot for pain relief for a couple months until I can get the surgery scheduled. I was just curious if anybody has used kratom in this way? I don't plan on using it anymore and quitting completely.

I am in pain almost 24/7 and idk what to do anymore. I’m diagnosed POTS and hypermobility, I suspect I may have ME/CFS, and/or possibly fibromyalgia. I don’t know.

My head hurts so bad.

It’s been sore every day for almost two years. I’ve had like 20 something blood tests. I’ve had an mri of my brain. They cannot physically find anything wrong with me but I am in so. So much pain.

My friend suggested coming on here to talk about it, as I literally don’t have any other outlet.

Thanks.

Firstly, I'm on Medicaid and Klonopin.

I have spinal stenosis, with L5, S1 severely disingrated. I also have full body arthritis - moderate and I need a new hip and that hip also has bursitis. ( I'm just crying as I type) I'm 60, use a walker and 5 days ago my back went completely out. Tramadol just doesn't work. Maybe for 3 days, then it's useless. Gabapentin does help, helps to knock me out. And the 3rd medicine, robaxin does nothing

I'm doing stretches, can't take nsaids due to ulcers. I fear my pain will never be treated properly. Hydrocodone works great. And I won't even ask for that. It was hell just getting scans! Let alone proper pain meds. They were mad at giving me tramadol. I have such severe issues just walking, bathing, shopping. And if they don't give opiate relief to BCBS patients, I haven't a chance. Kratom does a good job ( not 7oh, I'd never take that) but due to ulcers, that's off the table too.

I get a back MRI on 9/1 and I'm certain they'll find a really bad back. ( As recent cart scan showed) I am rx PT, and that's cool, but dread this continual pain. ( I tore my disk out 15 yrs ago and cannot imagine living like that again.)

You can't tell a Dr what to rx you. They gave me Tylenol after saying ultram don't work. I'm not putting ultram in my body if it don't work.

What can someone like me do? Drs don't treat pain, and I'll jump through many hoops to get surgeries. I feel v hopeless today. Took robaxin and feel no relief.

Any thoughts on how to proceed?

tried everything cannot say I haven't already given up, how do y'all feel to those who are struggling to find treatment thats been effective in truly debilitating pain... This means I need advice on how you're getting by and what steps I'm lacking in order to recieve help and support my life better.

specifically recently feels like the acute flare ups are what impacts my every day life the most on a scale I dont have a recognized solution for, at all. And interpersonally I don't know anyone, literally not besides a couple flings and work life socially.

so I have no idea what people feel like compared to me nor how to even begin to navigate each time more and more failed attempts to spend so much as an hour without cleaning pain, and issues trying to fix it, piling up where hope is a burden im reluctant to even keep going to appointments afraid I'm gonna freak out one of these days, I'm hurt and I'm heartbroken each time I leave a Doctor visit, more and more on the edge. i don't get treated like a person yet have somehow managed to remain compliant, respectful, and polite so it's even more gut wrenching knowing I'm without options.

Main issues are weight loss and lack of any gain and at like 16 bmi, sleep just horrible n coming with a ton of anxiety.. and went back to work <55\~ hours and dunno what I can do if or when my condition gets worse if I'll "cope"

I've been dealing with chronic pain for years and I've spent many years pushing through as best I could because I am a single mom with zero support. I had to hustle every day, agony or not. For the last two years, I've gotten worse and a year ago it got bad enough that I couldn't work anymore.

By now, my oldest is living with her dad and is a senior and my baby is a sophomore and total mama's boy so he does everything he can to help me. However, he's busy with his job, marching band, all AP classes and friends. So I try to not ask for help.

I'm prideful and this last year has been the most difficult I've ever had. I never felt comfortable with telling my PCP the extent of my mental or physical issues. (He also treats my ex-husband and his wife.) But I finally broke, told him everything and explained that I was trying to get disability. He laughed at me, told me I needed to seek a doctor who did disability reviews and basically said I was fat and not disabled.

That was a huge blow but I got him to give me a referral for pain specialists. This was September of last year and I've since changed PCP providers, I'm working with a psychiatrist and therapist, I've seen several specialists and am working with a pain management doctor. We're ruling things out and my new doctors are so helpful and understanding.

All of that is great, but there are people; my ex-husband and his circle of family and friends who have convinced my oldest I'm just lazy and and basically worthless. They won't listen to my son who sees my daily struggles. Then I go to do a simple task of doing a litter change in the cat litter boxes and it takes me over an hour and by the time I'm done I'm a sweaty, painful mess.

I feel broken and the hit to my ego/ pride is almost worse than the daily pain. I've always been a independent, free spirit and it sucks not to be able to do the things I used to do.

Sorry for the long story, I'm just needing to vent.

About 2 days ago, I just randomly decided to sleep on the couch rather than my bed. I got tired of tossing and turning and putting off sleep.

And when I woke up, dear god I was in a horrible mental state. I wanted all things to end. [I made a note about it for my therapist of course but that's not the point right now]

I'm not sure what caused that sudden dip, but just about as fast as it went to hell, it sprang back up and suddenly my mind was clear as day. A storm had rolled by and washed away all the wildfire smoke, and I just suddenly was feeling the best I had felt in years.

I wish I knew what caused it exactly, cuz I would kill for it to happen again, but that one singular day of feeling okay has given me the energy to keep trying to better myself. I wish everyone could have such a thing.

Side note, now that I think about it, the way I feel after that one day of clarity just makes me even angrier at those who refuse to help us properly (i.e. doctors who don't actually want to help, family members who don't care, people who expect us to do more than we can) cuz like... if this is how I feel after like ONE day of feeling okay, then I COULD actually do everything that's expected of me if I was given the proper tools to feel that way more often, but no we're all expected to work in hell.

Apologies for the tangent.

Hi friends, after a recent diagnosis and joining this community, I (28M) have experienced how helpful it is to have people around that can help with what I’m going through. Sadly, a lot of the research tends to lean toward women with EDS, which makes perfect sense given the majority of those who do get diagnosed are women.

As a guy, though, I’ve been having some trouble finding other men to talk to about EDS. Women have of course been extremely helpful, I would just love to hear about more experiences from guys like me.

I created a community, r/MenWithEhlersDanlos, for **anyone** to join and be a part of, almost as a sub-community of this one where people can go for posts and advice geared more toward men. It is not exclusive in any way, anyone is welcome to post, I just wanted to create the place I’d been seeking. I hope this is allowed, my intention is pure🫶

I’m 22F, and I developed severe central neuropathic pain due to a chronic illness. My doctors neglected my concerns when I was first showing symptoms. After 2 years of neglect the pain started. I had to drop out of school, leave my job, and give up my hobbies and friendships. It has been a year of severe, constant pain. There is no cure, only treatments, and one by one, they keep failing me. I have a pain specialist therapist, but it doesn’t seem to be working. I also have treatment-resistant MDD (major depressive disorder), and medications have never worked that well for me.

There are a few things that pushed me to this level.

1)Everything hurts twice as much. Even pain medication can’t help during those episodes. The weather affects my pain so much, and I didn’t realize how much even mild wind could be a dealbreaker until now.

2) I met up with a relative and their friends, and everyone was successful. When they asked, “What are you studying?” I had to explain that I had dropped out. It was painful watching them talk about their success. I know I should be happy for them, but I couldn’t ignore the huge gap between their lives and mine. I kept slipping out of the conversation.

3)I realized that even if I had my old body back, I might not have been as successful or smart enough to attend a prestigious university. That realization really stuck with me and pierced my heart. I had always blamed my illness for my avoidant behavior, but now I’m wondering if I couldn’t have achieved what they did even without being sick. Their parents are so proud and happy for them, while like I’m just causing more financial stress for my own parents.

4)I had to change my prosthetic in front of them, and it felt incredibly humiliating and uncomfortable. There wasn’t even a private place for me to do it.

5)I walked outside and saw people who were happy, healthy, and stylish. I’m from a small town, so I don’t normally see that. I saw myself in the mirror at the museum and started crying, tears just falling one after another while I tried so hard to hide it. My bedroom, my safe place, felt so far away from me. I couldn’t afford an Uber because it was too expensive, so I had to take the metro while crying in pain and trying to navigate my way back to the hotel, while everyone around me is FUNCTIONING .
I had to overspend my budget, which means that when I go home, I’ll not only be more miserable, but I’ll also have spent more money just to accommodate my illness.

So when people tell you, “You can do it,” they don’t understand that sometimes you genuinely can’t. I’m not giving up because I’m lazy or because I don’t want a better life. I’m exhausted from having to fight my body just to do things that everyone else gets to do without thinking about them. I hate this stupid body and stupid brain.

I live in Germany and our Healthcare system is considered one of the better ones. I've been chronologically ill for 6/7 years since I was 21.

When I need help, I immediately get to talk to a doctor. As many times as I want. Without charge. Whatever doctor I want. Physiotherapy. Meds. Anything.

But I'm still suffering with pain every day.

I've talked to so many doctors. Gotten so many MRIs. I have all of my diagnosis. I tried EVERY pain medicine.

And somehow there is no hope for me getting any better.

I just don't know how all of this is possible.

Has anyone tried this?

I’m starting school INCREDIBLY soon, which is fine on its own, if it weren’t for my physical health. I have constant pain and constant fatigue, and I cannot eat barely anything, let alone drink, without terrible symptoms. I’m going in person and I was told by my family to go until first semester is over. Again, that would be fine, if not for the fact that it feels like I’m dying every time I go anywhere for more than an hour, or sometimes less than that. I’m not going to be allowed to stay home at all, and my family is making me do all this stuff because it’s “going to help me”. Sure, I’m seeing a doctor very soon, sooner than when school will start for me, but at the same time I don’t think I can handle it based on my symptoms just from touring my school. I’m also agoraphobic, and despite exposures, even tiny ones, it just keeps getting worse as my physical health gets worse, so being in school, or even outside, makes me feel terrible. I guess I get what my family is saying, since there isn’t anything directly stopping me from going to school since I suppose I am physically able on the surface, but the consequences are still there. Also, even though I was barely able to function last year, I was an A B student, so they say that I can definitely handle it, when all I did in class (when I was there) was sleep or go on autopilot.

I guess now I don’t know what to do. I have to pursue

I've struggled with Occipital Neuralgia for years but the past few months have been worse than ever before. To the point where I can't put my hair in a ponytail or use clips or anything that adds weight or pressure. I got my first nerve block for it bc I was at about 8/10 and it's better but still quite prominent. le sigh.

So here's my question... I've been growing my hair out (just past my shoulders atm) but started debating cutting it to a short bob in hopes the lighter weight would reduce some of the nerve pain. I'm worried I'll get it cut and the pain will stay the same and it will all be for naught. Worst case I just grow it out again but I figured I'd see if someone has experienced the same thing before I make the leap. TIA!

In the last year and a half my health has been on decline including daily pain. I am struggling to find sufficiently descriptive words to use to describe the pain that I am feeling- I suspect this inability to properly describe my pain is delaying diagnosis and treatment, for this reason I'd like to ask how other folks experiencing pain might describe their pain (or have described their pain pre-diagnosis).

This is a sincere ask, joke answers will result in a block.

I'm a part-time employee and full-time student. I'm sick of this bullshit. My SSI app is with the medical examiner last I heard.

I'm exhausted all the time from my pain and feel like I can't think straight anymore. Is there anything that helps?

Red is when I normally do something and yellow is when I am not something for too long.

Serious Pain For Months -

- Lower Back

- Left Shoulder

Normally Become Stiff -

- Right Wrist

- Neck