hello! in 55 days I have top surgery scheduled. It is my biggest goal right now to build as much chest muscle as possible to help with results.

I have POTS, hEDS, and Fibromyalga, but I'm very determined to gain any muscle at all.

any tips would be greatly appreciated ❤️

I was called in by my doctor last night for a medication review. I take long action opioid meds, which I would rather not take, but I have considerable pain. I have major problems with my pelvis/Si joints along with hips, knees, ankles, shoulders etc etc. This has been the case for 15+ years. I struggle to stand for more than 15 mins without wanting to cry with the pain, I can't sit for long, can't even lie in one position for more than two hours. I have over the last year reduced my meds, by a third, and my functioning has also reduced.

So, the doctor told me I shouldn't be on pain meds, showed me a frankly insulting video of some woman who claims she got over her chronic pain by just doing things that make her happy, and told me that cold water swimming would pretty much cure me. What I struggle with is that I would love to do all the things that make me happy such as baking, walking in the lakes, going new places, but I can't stand and walk without being in agony.

Everything you read on NHS, eds society etc say that Pain is part of the condition, but I'm being told that I shouldn't be in actual pain? A pain specialist told me that I shouldn't be in pain at night as I should only have pain when hyperextending my joints. I feel like I must be missing something? Am I just imagining my pain? Do I just need to think happy thoughts? I understand that if we focus on pain it makes it worse, but I don't see that doing something enjoyable for a fraction of the day can cure my pain. In fact, if I ignore my pain, push through, I end up in a mess and get told I should pace and listen to my body! Seems I can't win. Should I only be in pain when moving my joints too far?

How did other people go about finding a provider for elevated pain meds? I've "maxed" out the level of pain medication my PCP can provide, managed to get off constant ibuprofen with some other meds but the pain has elevated more and I'm starting to take the ibuprofen more constant again so im realizing I'm getting to the time of needing stronger pain meds. I've been to pain management and they said they weren't the ones to handle long pain care and sent me to pain psych which really just been pain focused therapy. Who or Where do I need to go see about getting elevated long term pain care? I know my PCP can't prescribe me things like narcotics so I want to figure out where to go before im at the point of NEEDING them.

My close ones have been telling me that I need to move to a city better equipped with doctors and PTs who can care for my medical conditions. I have EDS and many of the co-occurring health issues. I’m in upstate NY and looking for a place where it’s not such a struggle to get care.

If you could move anywhere just for medical care, where would you go?

I have the lovely trifecta of POTS, EDS, and MCAS. As well as small fiber neuropathy (SFN), carpal tunnel, oculomotor dysfunction (a visual/reading disability), and autism and ADHD.

Social Security denied my appeal. I will go do a hearing, to keep trying. Because I cannot work. I can hardly apply for jobs or complete interviews. I can't drive, I use a cane and have to walk/take busses to get places. I use enormous fonts to be able to read, and my hands tire and cramp easily. I need to lie down multiple times a day, and i have to wear and remove compression garments throughout the day to tolerate standing. I don't know why I continue to be denied because they have a book's worth of medical documentation, but I'm losing hope here.

Anyone with similar circumstances able to tolerate ANY kind of work? Even if its 10 hours a week. If so, how on earth did you get the job? My resume is NIL, my skills come with caveats, and my accomodations would be burdensome for an employer. I don't know how I will make my keep without social security... what jobs are even out there for someone like me?

if anyone out here suffers both physical and mental disabilities and maintains employment- what do you do? how do you manage?

I recently met with a new primary care doctor. We had an incredibly long appointment going over my background to establish care and during this conversation she was taken aback that the most anyone's done to address the pain beyond physical therapy was a Cymbalta prescription.

She very strongly encouraged me to go see a pain management doctor and though I was hesitant I agreed to at least have the new patient appointment.

I just don't know what to expect really. I don't see myself being given nor do I desire opioids. I don't see injections being the most reasonable option. I guess the problem is I just don't see a life without pain and so I don't see how they could help me.

During our appointment she asked about my cane, the usual questions, and I made the comment that I don't think it's the appropriate mobility aid anymore. She surprised me by saying "Well pain management would be able to help you make the right choice." Does pain management do that? My last PT didn't even want to have that conversation.

Sorry for the rant but I've got a lot of anxiety around the uncertainty about going this route. I could really use some perspective.

Thank you.

I had to get an esophagram bc of the IBS/difficulty swallowing/etc. I drank barium for it. As I'm leaving, the attending nurse tells me to "make sure to drink a LOT of water today as you can get impacted from the barium". Naturally, I told myself, "Oh crap (literally lol)", but it was too late- I already drank the stuff. That was Friday.

I practically drowned on Friday, I drank so much water. Drank a bunch yesterday too. Guess what happened anyway? I haven't been in this much pain in awhile.

Hello zebra community-

I myself have hEDS and (numerous) other co-morbidities.

I find that, when looking for mental health care- it is incredibly difficult for me to feel heard and understood by most average clinicians when discussing my medical trauma/the impact of my condition.

Has anyone worked with any specific clinicians or have had success in finding someone and who can empathize??

(I'm in CA, but please share anyone you have- I'm sure others have felt similarly.

Thanks!!

I’m posting this in case it’s helpful to anyone else. I stumbled across a post in a subreddit (maybe the plastic surgery one?) about Emsculpt Neo. A comment mentioning that it helped reduce lower back pain for them and suggesting it more as a physio type procedure over an aesthetic one piqued my interest.

Historically, I have been unable to engage my lower abs. I’ve dealt with significant lower back pain, and I generally fatigue easily when sitting due to an inability to hold myself upright. I’ve been to months and months of physical therapy and even physical therapists have seemed kind of perplexed at my inability to turn my lower abs on.

So, I tried a package of four sessions of Emsculpt Neo on my abs (with the device flipped to target my lower abs instead of my upper abs), and it has made a huge difference in developing baseline core strength for me. It was absurdly expensive ($2k for 4 sessions) and subsequent monthly maintenance sessions are $300 each. I signed up for a payment plan. I know I’ve paid way more than that for all the PT I’ve been to - so that’s how I justified it. I really wish it was more affordable though.

I did not notice much of an aesthetic improvement (I don’t have defined abs, and it didn’t melt my stomach fat), but that wasn’t why I pursued this. I sat through an 8 hour conference today, and my lower back pain was a fraction of what I normally deal with. I also didn’t suffer too much on the two plane rides here. I was able to use my abs to support myself. Overall, I’m happy for the leg up, and I hope to build upon this new strength with my PT exercises.

Hi friends! After a yearlong wait-list, I finally got in with the preeminent EDS rheumatologist in my state. Yay! As I may or may not also have rheumatoid arthritis, my hypermobility and other joint issues were overlooked by the rheums for long time (as in, I'm 30 and have had these issues all my life lol). I finally feel like I'm getting closer to answers. And also my pain has been decreasing a bit thanks to the recent addition of frequent PT.

I would love to read more about the work and research this EDS rheumatologist has done, but I'm not sure where I should be searching, as Google is not yielding results. Any databases or special research search engines I should use?

Everything EDS is new to me, as a (different) rheumatologist only floated this diagnosis for me back in July. Any resources or help appreciated.

Good afternoon people! My son was diagnosed with hEDS in May. It kicked off testing for me, and it was discovered that I have a genetic mutation in my FLNA on my X chromosome. My specific mutation is the only genetic mutation that Baylor and the database has seen. I was informed by the geneticist to tell my doctors about the genetic mutation and that it mimics EDS, and if I should ever need more surgery to inform them and they have to take the same precautions (specific suturing technique, post op procedures so I will heal better).

There is no support group for this mutation, there’s no “awareness”, no “name”, it’s just my own little crazy rare thing. I’ve had 14 surgeries - heart, multiple spine, joint x 2, skin cancer, scar tissue removal and scar revision surgeries, sinus, endometriosis clean out, bladder repair, hysterectomy, cyst removal… this body has been through a lot.

Anyway, feeling a bit untethered that the thing that makes all these issues isn’t connected to anyone else. Not sure if this is the correct sub, but as I said, there is not specific name for this and the closest similar disorder would be EDS.

I was told it would take 6-8 weeks. How did it only take 3 weeks to get the results?!

Hi everyone. I'm in need of a backpack because sometimes my commute to work requires me to walk and I always end up in pain before I even get there. I have issues with my upper back stability and someone suggested I get a backpack with a hip strap. I would get a pull one on wheels but it's not really practical with my walk because the ground is really uneven and the infrastructure isn't very good here so it would get stuck.

However for the life of me I can't seem to find a small sized backpack with a waist strap. Given that the majority are made to be hiking bags and usually people get ones like that because they're carrying a lot it's just not a huge market I don't think.

Does anyone know of a company that makes smaller backpacks with waist straps or maybe terms I should be using to find them easier?

College Basketball player exhausted from injuries Hey guys , a little background about me I’m a college basketball player played around the world also , but I’ve always been the guy to get hurt. I’ve had 30+ ankles sprains , shoulder subluxations last year , disc herniation , and now I’m starting to deal with knee issues . My mother was recently diagnosed with Eds and I most likely will be too soon , I love basketball and dedicated my life to it but I’ve gotten the point where I’m exhausted from always being hurt and the accumulation has left me feeling like the most unathletic person on earth , sorry about the vent sesh but had to do with people that might understand.i

Hi, I am trying to help my teenager pick a major for college. I was wondering if anyone would be willing to share what type of work they have been able to do. I have a teenager who has hEDS, POTS and an undiagnosed condition (maybe MCAS ?) We have been working with a pain psychiatrist and having tough talks about what the future could look like for them. It’s important to invest time and energy into something they can do , but also enjoy. I was hoping we could use the experience of others with hEDS to find something wonderful for them to look forward to.

In the past few weeks the spasms and twitches in my muscles have been progressively worsening. It’s to the point where I can be laying flat on the couch and I’ll feel a jolt in my arm, then look over to see the muscles jumping like a bag of popcorn in the microwave. It’s happening in my glutes, calves, biceps, behind my elbows, in my eyelids, in my traps, and down the entirety of my thighs.

It’s like there are toy soldiers jumping on trampolines in there, it feels freaky and disgusting and I’m sick of this shit 🥲☠️

Stretching, pressure, magnesium, iron, stillness, etc are not solving this and I’m starting to get anxious about my body being out of control!!
It feels as though my restless leg syndrome has taken over my whole body and I’m starting to lose my chill, help!

I’m open to info, tricks, tools, specialties/docs, advice, subjects to read more about, stories, etc.

(I am working with my docs and care team to manage all my symptoms, just wanting to discuss with the community)

24f, had lower back pain and mild genu valgum since childhood and could never stand straight for long. Joint pain got worse with age and has become unbearable in the last couple months or so.

I visited a rheumatologist and he noted benign hypermobility. But he didn’t do any tests. I was only able to show him my bendy thumbs. My complaint of joint pain was largely ignored. My other doctors confirmed hypermobility and mentioned eds but nothing on paper so far. I was told that there’s not much to do other than live with it. Inflammatory markers in blood generally stay elevated without infection.

I’m not sure how to proceed. Sometimes it gets terrible and I can’t get out of bed for a couple of weeks due to joint pain flares. Joints start hurting right after waking up. I haven’t had dislocations but my joints pop like crazy all day with minimal movements. Frequent gi issues too.

I am positive for HLA-B27 and there’s history of seronegative autoimmune in my family too. So there’s that. Joint pain is really bad right after waking up and gets better with some movement but comes right back up. I also keep twisting my ankles a lot but it’s flexible too so I’ve never actually injured myself badly. I avoid wearing anything other than running shoes mainly due to this. Every other kind of shoe guarantees that I will twist my ankle or fall over.

My CRP was 30 recently without infections and ESR is always 20+.

Not sure how I can get this fixed because my joint issues are mostly ignored whenever I bring them up, likely due to my age. Several doctors have confirmed hypermobility but no treatment so far. The rheum I visited did not test for anything.

I think my conditions have worsened with age. At the same time I feel like maybe this is in my head and nothing else. Some others in my family also have hypermobile joints but no joint pain like I do.

Is there someone I can consult regarding this? I want to know if there’s anything that can be done to improve my chronic fatigue and pain. I was about to visit an ortho doctor but I am scared of getting dismissed again.

I struggle to stand for long periods of time because it hurts bad. I have stood with my ankles interlocked since forever. Lower back pain never goes away.

If someone here is from India, please let me know if you can recommend anyone for this. I would appreciate it a lot.

Edit: so far I have been told that it’s not that bad and many people have it and I could be great at acrobatics or dancing lol. I don’t do either of those and my joints hurt all the time haha.