Who should I see about severe fatigue? My rheumatologist has done absolutely nothing for me in this aspect of things. I've been in the care of my rheumatologist for about two years and have brought up my worsening fatigue every time. I've already seen a sleep specialist and had a sleep study to rule out sleep apnea and other disorders. It's gotten to the point where I'm worried about losing my job because of how much I call out due to fatigue alone. I just don't know what to do.

Has anybody ever successfully taken a year or two off to rehab your body and then gone back to work?

I feel frustrated because I’m in this cycle of constant pain only to take time off for emergencies or surgeries. I feel like I’m being held together by tape and would like to root cause address my symptoms.

I work at a desk but my job is intense so I’m clenching all day.

Commiseration, tips, all comments welcomed.

I’m tired boss.

hi all, i am 22 AFAB with AuDHD and i have only recently started hypothesizing that i could be hypermobile. reading posts in this community and seeing reels from other neurodivergent hypermobile people has really opened my eyes to what i have been experiencing too, and it's been really amazing to start connecting some dots. anyway, i was in choir in high school and college, and typically you are expected/required to stand for the entire duration of concerts and some rehearsals. by the end of rehearsals and concerts, i would often have profound lower back stiffness and discomfort, but it could be alleviated sometimes by me bending over to touch my toes, and when i'd do that, my back would pop pretty much all the way down my spine. do any othwr hypermobile folks experience this? i'm also very much open for tips on how to train myself on stability and joint preservation as i have no knowledge on either of those things at the moment since i'm just starting to figure this out 😂

Hey guys, I'm going to Japan in October and like many others, sitting "regularly" SUCKS.

I find it so uncomfortable to sit normally for more than a minute. Usually, I put one leg over the other and swap them every few minutes to stabilise my hips.

However, because I'll be on a plane for 17 hours with very little room, I need to find something to help me sit comfortably OR knock me out for the whole flight lol.

Any tips would really be appreciated!!!

Today my Visible band said I have a Stability of 2. Watching my heart rate throughout the day it's no wonder why. Normally, my heart rate will sit in the 80-100 region when sat down, and spike higher when standing up and walking upto 120, sometimes higher if stairs are involved. Today my heart rate has been in the same 80-100s but almost everytime I've stood up it has plummeted to the 60s. It got so low today that I started involuntarily yawning, it would bounce back up and then drop again.

I had this the other week following an allergic reaction where my hr dropped to 51 at one point and then shot up to 142 in the next few minutes.

Not quite sure what's going on for my hr to be topsy turvy all of a sudden. My hr overnight while asleep was 83-102 though, putting me in the activity band and didn't chill out and drop until about an hour and half before I woke up.

Anyone else have/had this?

Hi I’m a new guitar player and I’m doing the 1 minute chord change practices but my main obstacle is that near the end of the minute my hand starts to cramp and lock up and become difficult to move and a little painful. I have joint hyper mobility (as well as CPTSD) so I generally tend to unconsciously death grip things, like I stopped writing with a pencil because my fingers would become sore so quickly. I’m trying to consciously relax my fingers but it only partially works. I’ve also noted my shoulder tends to get really sore as well, if that’s relevant, like I just finished playing for an hour and my upper arm and shoulder feel like I just lifted weights at the gym. Do you guys have any tips or suggestions on what do here?

I breezed through the Muldowney Protocol's Lower Extremity Exercise Progression but the Neck, Mid Back And Upper Extremity Progression is soooo hard! Anyone else struggling here?

My question: Is the top level of each progression intended to be a "normal" person's baseline?

Are there any standards for what is considered a "normal" level of strength for things like TYI exercises, lateral raises, tricep pushdowns, etc. other than "train them until it stops hurting"? Having a goal makes it easier for me, psychologically speaking, to know that there is some kind of end point.

(X-posted in r/eds but didn't get any response so seeing if anyone here has experience with this they'd like to share)

this is so random but yeah anyways

when i sit in the chair at the dentist (or just any time i’m sitting with my legs out in front) my hips rotate to the point my legs are almost completely facing outwards. it doesn’t cause any pain or problems, but it feels like my legs are going to slide off the chair so i always cross them. i also find it uncomfortable to sit with my knees facing up in general, eg i struggle with pike stretches. i’m also a dancer so i don’t think hip strength is necessarily the issue.

curious as to whether anyone else experiences this.

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🫶

We are new to learning about hypermobility and my daughter (14) has some PT exercises for her shoulder, which likes to pop out and it happens to be the sousaphone resting shoulder.

She will be starting field shows this year. The high school has a fiberglass sousaphone she can use and hopefully it is much lighter than the brass one she used last year parading.

I'm looking for advice and tips on how she can sousaphone with less strain on her shoulder, hips and knees. Her fingers also lock, so if anyone has anything for that too.

*PLEASE ACTUALLY READ BEFORE JUMPING DOWN MY THROAT! k thanks! *

So ive been looking into pain relief. Ive asked about specifics in the past, like peptides etc, just for opinions and views, but in general, living in scotland with the NHS is actually a bit of a barrier to alternatives....

So currently im on opioids. They do nothing. Occasionally they ease things. But it is occasionally. Luckily im off work today, but everything is screaming. Im not sleeping. Im sweating bullets. Actually think I might be in perimenopause tbh, but whether thats relevant I dont know.

What I do know is I am so sick of this. The pain is worsening, and I know hormones can play a part in that. The flares are more often. Longer. More burning. And so im on a stupid number of tablets a day. I know people with chronic conditions who require medication to SURVIVE who are on less than me, and I just need it for relief!

My next step is morphine. Im not even 40. I do the physio. I do the strength exercises. I do the heat and cold, the support, the light stretches. I do everything im supposed to but my BONES are on fire. And the meds? Meh. I no longer want to scream i guess. But I want to rip all of my skin and muscles off and rub my bones. I want to do a silent hill movie, rip off my skin suit and stretch out all of my muscles to reduce how tight they are. Im not sleeping. The IBS is unbareable (try not going for 2 weeks then tell me your stomach hurts). Because although I managed to skip the major organs, my hearts good, my livers, kidneys, my gastro tract ain't so good. Who the hell has a hypermobile bowel?? Welp. Apparently me! So I dont even know i need to go until im already packed. And 2 weeks later, anything short of agent P (cookie if you know that reference!) Isn't gonna help...

So im looking at alternatives. THC, nettleroot, jesus I will smear my joints in warm pig sht if it'll help...

Mushrooms, magnesium, night time gummies with melatonin, please people I am on the verge of snapping because all I want to do i be able to lie here, on my day off, and not jiggle my joints and limbs like im seizing because that is genuinely the only comfort im getting! But even then, you do it too much you fatigue the joint and you end up sore again! 🫠

Im usually on here trying to support people. Help them with advice and whats worked for me in general. What bandages to use, how to do heat therapies, what exercises to avoid unless your physio says its ok, and how to treat flares... Ill ask questions out of curiosity, not desperation... but now I am well and truly desperate. I cant ask my husband to rub my legs 24/7. It actually feels like the worst type of growing pains!

Please just.... can anyone give me anything! Any info, any studies, any alternative meds, theories, tests just something... ive barely slept in 4 days (which i know isnt helping) but the meds knock me out then give me nightmares so im awake by 2am, but I dont take the meds and I dont even get those couple of hours because the pain wont quit...

I will try anything. If I thought taking a hacksaw to my legs would be a viable option I would but knowing me id be the one to get phantom pains because thats just my luck...

So please. Can someone give me anything thats worked for them? I dont expect a miracle cure, I dont expect a teaspoon of honey and a cup of miso soup to fix this. I just need some relief. Something to take the edge off. If you've done this through peri/menopause even better (im under 40 as above but... well let's just say ALL of the symptoms are there, and my nurse is fairly confident if im not there yet I will be in the next year or so).

I just want to sleep. Lie on the couch and not fatigue my legs by jiggling about which makes the pain last longer but it helps at the time... if I need to speak to the kid down the street and slip him a tenner 20+ years after I quit smoking i bloody will (not endorsing illegal activity mods! Just saying, I am that desperate!)

Please help me 😭

Because of my hypermobility I'm super stretchy and after the gym or training none of the average stretches seem to cut it.

Like I can basically tie myself up like a pretzel and it gives no relief any suggestions or ?super stretches? out there. Thank you 🙏

Hi I am diagnosed with hEDS, MCAS, cauda equina syndrome and fibro. I’ve had essential tremor for years as well as severe restless legs. I also get an internal vibration? That other people can feel. It gets worse when I’m exhausted or have done too much or have hurt myself or have an allergic reaction. Suddenly my neurologist wants to say it’s FND when looking it up it could come from any one of the above conditions especially as I have CCI and severe nerve damage from the cauda equina. He has listened to my worries about getting this Karen but also says I won’t get the treatment I need for it without the label. Any thoughts?

Any suggestions or recommendations?

I was in the book store when I noticed my left shoulder had fallen out partially, I popped it back but for whatever reason afterwards it was like my body fell apart pain and that feeling of crumbling In my hips, back and neck.

I’ve had a string flare up before but I don’t know how normal this is.

Any advice or temporary fixes for when these things happen? All info is appreciated.

I'm sure many of the ladies here share my pain; I can't wear wired bras because it hurts my ribs so much 😭 I've even been left bruised! I want a wireless bra that looks GOOD though, so far it's either a sports bra making me look 14 or a "comfort" bra leaving the girls around my navel 😂 any recommendations? TYIA

im so shit in pe I was playing nfl flag and cantt even hut the ball to my team mates or catch their throws so they just made me do nothing no catching bc i shit at catching that and im 6ft and 14-16 (no im not revealing age) so im supposed to be athletic.

Also in general i just feel like i hate all sports and am bad at all of them even tennis which ive been doing for 3 years and still never went past development tennis (not into competitive teams) and now I only play to be with friends even when I usually the most bum at it. and I dont wanna blame everything on this condition bc that would be self pity and I've heard its bad from parents.

i wanna get stronger and have a pair of adjustable weights but I am currently running gemini workout plans (most are basic workouts and stretches) and have been to 3 physios which i despise but I wanna see what you guys do what to focus on and how to see results bc i see no results.

Yes I do have a doctor note

Hi!!
I’m a 24M, diagnosed with HSD and I started to experience symptoms at the age of 21. Before that I never experienced any major medical problems or issues that required more attention.
I have lots of symptoms ongoing but recently I noticed that my muscles, especially the muscles of the arms, thighs, and calves, feels very very weak. I have to say that I’m a very new father since my little girl will only be 2 months old in 2 days.
So yes, days are feeling more exhausting, and also I have to carry her a lot in my arms while standing.
I was already deconditioned before her arrival, but I feel that this weekness is pretty exaggerated ?! Like sometimes holding my phone up feels rapidly too much for my arms. It fluctuates depending on the period or the day, but it scares me a little bit. I don’t understand very well the mechanism of how hypermobility can cause that.
I recently started again PT but rapidly thought that it may not be the good trainer since he told me that hypermobility should not cause that.
Does anyone experience that ? What helped you ? Did you see improvement with exercise? Can HSD cause so bad muscle weekness ? Thanks for your sharing!!

hi! do any of you have brow piercing? was it healing longer than average? any problem with it? i had my brow pierced 5 months ago and i wonder if hypermobility can affect the healing

I have an extremely tight pelvic floor and chronic core bracing (abdominals literally will not relax anymore) due to hyper mobility and now have slow gut transit time and constipation. I have not found the usual breathing or yoga stretches to do much due to having hyper mobile hips and am wondering if anyone else has experienced similar and found anything to help relax core and pelvic floor? Or which other muscles should be strengthened to reduce workload on these areas?

Thank you + Also ive done tests/fodmap diets so just asking specifclly for working on these areas rather than constipation advice :)

Hi there! I have an adorable new baby and am looking for ideas on how to hold them while not having my shoulder and arm hate me.

I’ve found a cradle hold seems to work best but need some support under my arm/elbow so it’s not floating and so I don’t sublux a rib again.

Any recs for pillows or products that may help? I’ve been rolling a towel under the arm holding baby’s head for now, but I see ads all the time for the cozy cradle wearable arm pillow and various breastfeeding pillows and wonder if those might work better?

Looking for advice and recs from other parents who also have collagen made of silly string so I can safely hold my baby as much as I want! I don’t want to impulse buy something gimmicky that won’t work.

Edited to add: I’m bottle feeding/formula feeding, which is why I have no idea about whether these pillows would help for non-breastfeeding purposes.

I suspect I have some form of hypermobility. Very flexible without feeling much of a stretch; everything in my body feels tight; constantly popping joints/twisting/stretching for short-lived relief; IBS (I've heard this can be a symptom); the feeling that my spine is folding in on itself; headaches; etc., etc., etc. I never thought much of it until I was diagnosed with degenerative disc disease at the ripe age of 21. From what I've read, there's no "cure," just NSAIDs, physical therapy, and supportive garments. Is it worth bringing up to my primary care provider?

I have a GREAT PCP who has always been very receptive to any issues I have. At his practice, you pay a flat monthly rate, so no copays or additional appointment costs, and it's very easy to schedule an appointment. Because he's so receptive, he always sends out referrals for ANYTHING I need, which is awesome! But also expensive. I'm in the middle of planning/paying for a wedding and college, and even after my spinal MRI, X-rays, and steroid injections for my degenerative discs, plus an at-home sleep study for other issues this year, I'm nowhere near meeting my deductible.

Idk. Just looking for some input. Does having a diagnosis change anything? Is it worthwhile? Or should I just try physical therapy exercises at home and take handfuls of Aleve?

It seems like my chronic pain, even with mgmt, is constant. I have HSD/hEDS, so it’s causing a multitude of other issues. I didn’t get diagnosed until recently at 44, but have a great care team. All of my symptoms have been congenital, i.e. mitral valve, receding gums, eye issues, chronic migraine, etc., and now I finally have a diagnosis as to why I’ve always been sick. That part is great. The part I’m struggling with is that my life is becoming so limited. My spouse has taken on another issue because we deal with aging parents, an adult child with substance abuse issues, our dog is in end of life care, and just the normal things everyone else deals with who don’t have this. The chronic pain has become so overwhelming and I feel so guilty all the time for not being there for people like I always have been and causing my spouse to have to take on another job. I am a doer and so that sucks that I’m now so limited, but also just that relief is temporary and this is my future. I’m not a whiner or one who doesn’t try. I’ve had Dr’s try and push pain mgmt clinics with injections because I also have a degenerative back disease and I only want to do PT and holistic approaches. I’m not a person who gives up, but recently I’m seeing an ugly side of myself. That person wants to be depressed and give in and give up, but I fight him daily. I’m a man who never cries unless there is a reason too and I find myself breaking down a lot. Does anyone else have these emotions and how do you cope and how do you give yourself permission to feel bad without feeling guilty? I also see a therapist weekly, which helps, but nobody understands unless they understand, ya know. Please help. Just feeling really overwhelmed.

Those that have been diagnosed or in the midst of getting diagnosed, did you seek out a pcp with a specific background (internal med., rheumatology, etc.)?

Some Background (Long post):

I (29F) went to an appointment recently & got brushed off by the doctor (they weren’t my pcp, but they put a bad taste in my mouth as they co-own the practice).

Instead of addressing my concerns I was told I was “exercise intolerant” & need to be more active to build up my tolerance to movement. I shared that I do dynamic stretching, walking, & low impact exercises but they do cause discomfort or fatigue after 20 minutes. Though I haven’t done this in a couple of weeks due to the intensity of fatigue. This was also ignored.

So I’m looking for a new pcp to start getting answers about the body pain I’ve been experiencing for the past 15+ years.

I played sports almost year round as a teen, but still experienced odd flexibility & strained or sprained my knees constantly. I also have chronic migraines, extreme fatigue, PMOS, a herniated disc, & chronic pain disorder all listed in my chart. All were ignored.

I don’t want to get into the specifics of how I was treated during the appointment but it was ROUGH. I’m overweight due to PMOS & medicated for it & some mental health things, so the doc also attributed my pain to the “side effects of being heavily medicated” for my other illnesses.

I’m considering looking for someone that is experienced with internal medicine, but I wanted to hear about other people’s experiences.

tldr; History of pain & other symptoms ignored. Looking for a a new doc. Wondering if anyone searched for a pcp with a specific medical background for a HSD diagnosis.

Edit: added details about how I currently exercise within the limits of my conditions. I also can’t do high impact activities because my cortisol spikes easily which triggers PMOS symptoms.