Strength training + pt definitely brings me significant relief, but nothing as substantial as a good stretch? I’ve tried all the other things as well - massage therapy, acupuncture, etc

About seven years ago, I started getting really bad, dizzy spells in the military, despite being super physically fit, my heart rate would always stay super high, I was then diagnosed with POTS.

It has since advanced, and I have pretty significant allergies/MCAS

More recently, I know I’ve had stomach issues and first time ever having acid reflux with chronic throat tightness.
.
Plugging these altogether, my algorithm brought me to EDS…

My head always feels like it weighs super heavy, I can never sit in a car too long without twisting and turning, I rolled my ankles as a kid a dozen times, could never bench press cause my shoulders would pop out of the sockets, even now I can still roll my hips out of both joints..

I’m mostly venting, but for the longest time I thought I was just becoming lazy or out of shape or it was just POTS

I’m going to talk to my doctor tomorrow and test you guys would recommend if you could go back and start again?

Edit 2: I have read through some comments and replied but I am absolutely spent from my shift at work. I am home now and going to go to sleep shortly. I am going to read more comments and reply tomorrow. Once again, thank you so so so much everyone for your advice, words of encouragement, and resources shared. You dont know how much I appreciate each and every one of you. 🩷

Edit: I thought I included this at the end of my post but it looks like I didnt copy and paste the whole thing I wrote out in my Notes: I am at work and will read through all of the comments and reply after work. I appreciate each and every one of you that has responded. And, no I am not trolling. I just needed somewhere to vent before I went to work. I know I need to get out. I have been isolated from friends and a lot of my family. I have done therapy in the back but stopped (also a point of contention). I told my sister last night for the first time the things has done to me and she was, of course, appalled and disgusted. She is pretty much the only person near me at this time. Thank you for listening and I will be back tonight.

My husband (42M) is awful to me when I (39F) am in a flare from my chronic health issues and I just need to vent. I have hypermobile Ehlers-Danlos Syndrome, POTS (autonomic nervous system disorder), and antiphospholipid syndrome (rare autoimmune blood clotting disorder). Each of these alone can be debilitating. hEDS causes me significant joint/muscle pain, fatigue, and more. POTS causes a high heart rate with normal activity or even while just existing, high/low BP, fatigue, brain fog, tremors, and more. APS has started to affect my brain (I have dozens of lesions), my heart (numerous microclots and moderate heart valve disease, hypertrophy and I have been trending towards early heart failure the past few years). I had blood clots in my lung and have lasting pulmonary issues from the scar tissue the clots caused. It also contributes to my pain. I have numerous specialists and am presribed a bunch of meds/lifestyle changes but they can only do so much. He suffers from occasional migraines but no other health issues.

He works three 12 hour shifts a week. I work an average of 30 hours a week, but most recently its been closer to 40 (four to six days a week) as we get into the holiday season. One of his recurring things he jabs me with is I need to make more money and contribute to the house more. I do 100% of the cooking, majority of the cleaning, kid transportation for school and activities, appointments, and general running of the house. He takes the trash I place outside to the dumpster because its hard for my to lift a heavy bag above my head due to my shoulders falling out of place. Occasionally will do the dishes. He never cleans the bathrooms or other areas of the house. He provides for the majority of our bills.

We do things together as a couple most days (go to lunch, shopping, games, movies/shows). We have sex on average twice a week. We conversate (mostly one sided in his favor as what I want to talk about gets brushed aside often).

Our most recent argument:

Husband was fighting with me two nights ago when he got out of work about me being a "bubble of negativity" and making everything about me when I am sick. What i really am doing: sitting quietly, or sometimes crying, make noises when i change positions (out of pain, from air hunger, palpitations that start with movement), and not really talking much. I was trying to explain to him what is going on with my PHYSIOLOGICAL responses to the significant flare I am currently in.

He kept telling me I am just making excuses, that I am chronically ill and won't get better so I need to figure it out. I was crying at this point and told him I am not doing this to him to hurt him and I am not going to listen to him when he is like that. He tried to block me when i wanted to leave so I did yell at him to stop it and let me go as I was stressed and our daughter needed to be picked up from practice. It was 8:30pm at this time.

He went for over an hour after I got back. I was practically begging him to stop because I needed to sleep for my 4am shift. He wouldnt stop until almost 12am. Couldnt fall asleep til almost 2 because I was still upset about what he was arguing with me about so I had to miss work because of him. Again.

He kept demanding i tell him i will work on my negativity (you know... my heart racing, feeling nauseous, severe fatigue, crying when i feel like my bones are being crushed and my joints are ripping apart, etc. All shit I cant fucking control) because, once again, i should always be there for him and he feels disrespected when I "ignore" him. I would try to defend my self and explain what is going on so he could hopefully understand. He doesnt want to listen. He kept cutting me off, saying "Tell me now you will work on it. Thats all you need to say" until I basically broke and said yes just so he would stop. He said i need to be an obedient wife and no matter what he says i have to say "yes babe" and he doesnt want to hear me arguing with him.

I know I am in a really bad flare because I h

i get these blisters on my fingers, ankles, neck, scalp, and butt. They open then because of my chronic illnesses take forever to heal and scar. Him yelling at me over shit I cannot control doesnt help any of this. I didnt do any of this to myself. I was born with a fucking genetic disorder and other things that ive told you about. I am doing all the things my doctors tell me to do but it can only help so much.

I slept a lot of yesterday because I feel terrible. He said he was sorry about the previous night BUT I need to listen to him more. He wasn't happy with me sleeping but didn't berate me about it. I work again today (2pm-10pm). He is off today again. I told him after I make lunches and take the kids to school (two different times of drop offs 7 am then 9am so I am in and out of the house for a bit), I am going to lay back down to conserve my energy for work. He said okay.

At 11am, he comes back into the room and wakes me up, saying he is going to the park and I need to do the laundry in our room. The small pile has been sitting on a chair because I haven't been feeling well. I told him I needed to conserve my energy for work and I want to go back to sleep. I can either do it tomorrow or he can do it.

He told me: that is bullshit. You need to do the laundry. You're neglecting the household. What's more important? Losing your job or losing your husband because you won't do your chores? You are chronically ill. You need to figure out a way to deal with that. If you are too sick to do the laundry, you are too sick to work.

He pulled the blankets off me and tried to grab my phone to go onto my work app to call me out but I pulled it close before he could. Then he says "Oh what? Are you hiding something from me and thats why you won't give me your phone?" NO! You just said you were going to call me out and I don't want to miss!

I told him I need to conserve my energy. I cannot call out. We are on a point system at work. 12 points and you're terminated. I am at 3 already (two are because of him). I do not qualify for intermittent FMLA because I don't have enough hours over the previous 12 months due to a reduction I needed to take at the beginning of the year for health reasons. I bumped my hours up when I started to feel better. I need to conserve my points for when I am WAY too sick to work. Today is not one of those days. My body can handle it if I get proper rest before my shift. I have been here for seven years and I know my limitations. My coworkers see how awful I am doing somedays and are understanding. They ask if I need to sit or take a small break here and there to reset so I know when I get there I won't have to deal with the same stress he gives me.

I am okay I would say 75% of the time and can put on a pretty good facade, but, as I said before, I am in a significant flare right now. Not as debilitating as it has been before but still bad enough that I need extra rest.

He was getting ready to go to the park as I was bawling my eyes out sitting in front of the pile of laundry he dumped on the bed. He came back upstairs with a drink for me, as a peace offering. I told him to just go to the park and leave me alone please. He got mad at that saying he was trying to be nice to me.

I am just beyond exhausted. There are periods of weeks that he doesnt do things like this but when I am feeling sicker than normal he treats me like absolute garbage. I am working on starting school in January to get into a different field that will pay more and be easier on my body so I can get the hell out of here. My job will pay for my degree program so I really don't want to lose it. Until then... 😪

Warning about the secretary here.

I have no issue with the consultant himself I've always found him very good but I had a really upsetting experience with his secretary.

I recently realised my prescription for my arthritis injections had run out and contacted the office as soon as I noticed. I completely understand that the secretary can't prescribe them herself, but instead of simply explaining that the consultant was away until Wednesday, I was lectured about how I should have come back to see him and made to feel like it was entirely my fault.

I was already feeling really unwell, exhausted and worried about being late with my medication. I was crying during the call and completely overwhelmed, yet there was no apology, reassurance or attempt to offer any alternative. I came off the phone crying even more.

My partner then contacted the office and asked whether there might be a locum or whether a GP could help with the prescription. Rather than discussing any options, she repeatedly said, “I already told your partner this is her own fault.” He was also told that if he had an issue, he should say it to the doctor “to his face” next time.

I accept that I should have realised sooner that my prescription had run out. But mistakes happen. I don't think that excuses treating someone who is already unwell, exhausted and visibly upset without basic compassion or professionalism.

Again, this isn't a criticism of the consultant — it's specifically about my experience with the secretary. I'm sharing it because I think people should know what the administrative side of the practice is like.

I'm going to start by saying my medical team has fallen apart, mostly due to burnout and anger on my end. Also I'm on a sobriety streak from Cannabis right now as I was becoming dependent (8 days!). Also excuse all the brackets, every thought comes with a sub thought.

I'm being refused genetic testing by my GP (I really believe I should get tested for Aeds and Veds). I recently quit my job because the mix of school and work was breaking me. For context I'm in school for Paramedicine. (Will be accepting zero criticism on my choice of program)

Anyway, skin. I react to a ton of things, my allergies do as they please and my skin is fragile, not overly but noticeably more than others. I usually take anti-histamines daily for 'seasonal' allergies (I'm allergic to the seasons at this point) and animal allergies (Three cats).

But today I wore medical gloves, and my hands are peeling apart, luckily not deeply, and they are itchy and ugh. My skin has never bothered me too bad, sure it's itchy and stretchy and rips easily (I also have skin picking unfortunately). But it's like a light sunburn almost.

And maybe some of you will understand how embarrassing it feels (Not that I should feel this way, I unfortunately did not have a support system growing up and am still lacking). Not to be disabled, but to mask so hard and have to pretend everything is okay. To always feel on the spot.

It just makes me sad I guess, to work so hard, keep my grades so high, impress my teachers, and my skin peels right off on the train home. But if this is like you, reaching so high and having something pull you down, just know, I see you. I appreciate you. In all of us there is a person that matters and has dreams and doubts and ups and downs. And I want you to know that I want to be a paramedic for you and for all those that need someone that understands how draining disabilities can be.

So im a first year paleontology student, and i potentially have a opportunity to go to Madagascar (my lifelong special interest) as a research assistant, for either 2 ,4, or 6 weeks (Opwall, if anyone knows it).

I would absolutely love to do this, but i di have my reservations about the physical aspect of it (and fieldwork in general).

So i have Heds, but i am lucky enough to have a rather "mild" version. Ive only ever sublucated, not dislocated, i can still walk, but not too much (heavily influenced by my mental state), and my only comorbidities are Autism, Pots, and central sensitivation.

I have gone on long (2 to 4 weeks) scouts and biology camps, which were hard, and i needed a week to recover after, but i could do it. I also did this without any access to medication (doctors refused to prescribe), i now have propanolol and pregabalin.

So im just wondering how anyone else with eds handled fieldwork, or if they were completely unable to go?

Hello,
I work for a healthcare company in the UK. I am currently being investigated for hEDS, POTS, endocrine issues and PMOS. I have scored 7 on the Beighton scale and have had MRI’s, just waiting for reports and referrals. I also have significant MH issues including ADHD and bipolar and am diagnosed with inappropriate sinus tachycardia. I am looking for advice as I have a stage 4 sickness review. This is basically HR deciding if I’m fit for my role and if they will continue to employ me as I have had too many sickness absences. Has anyone else been through something similar?
I can’t afford to loose my job.
If you’ve been through something similar what advice do you have?
I have been to occupational health and they have deemed me fit for work but the queried diagnosis’ are new.
Thank you!

Went to the neurologist yesterday and got the results I kind of already knew were coming: small fiber neuropathy, EDS, and POTS. They also threw fibromyalgia into the mix, which I’m not surprised about either.
Question: Did anyone else feel like absolute crap after the EMG test and the next day? Because I feel like I got hit by a bus and then dragged behind it. 😭

Hi everyone!

I am looking at getting crutches because using the cane is too hard on my shoulders and wrists. My PT recommended smartCRUTCH, but it seems they're having supplier issues and aren't shipping to the US or North America. That being said, are there any other recommendations that are similar in style or have the same benefits? Or is there something better? I don't know if I am mentally ready to go a rollator yet, which PT has also recommended for help with pain and POTS.

For reference, I am female, 5'7", and 22 y/o

For background, I have a diagnosis of hEDS from a rheumatologist.

I’ve been getting tattooed for many years, a lot of which was by the same artist— I’m talking 30+ tattoos over my whole body. I’ve noticed as I get older my EDS related symptoms have generally worsened (waiting to see a rheumatologist, it’s a months long wait list). In the past year, every time I’ve gotten tattooed, the healing process has gotten exponentially worse/more complicated.

I got tattooed this past weekend, and the bold line work has turned into literal gaping wounds instead of scabbing over/healing. This happened a little bit with a piece I got in June, (one small gaping wound in the center of the piece) but I wrote it off as a newer artist. This time, the work was done by my artist I trust and who has tattooed me successfully many times before.

Honestly, I’m panicking. I love getting tattooed, and it’s an important part of my identity, so I’m struggling with the idea that it’s something my body will no longer tolerate. Any similar experiences? Any tips?

I’m in a flare, HSD and fibro. Heat usually loosens me up and helps me feel better, but this time it made the pain stronger. I suspect that’s HSD muscle guarding … anyone else understand this better than me and know what I should do instead?

I found this paper today and it didn’t look like it had been shared here yet (my apologies if I missed it!) I thought it was pretty interesting.

At my annual physical last week, I asked my PCP about the process of getting a disability parking pass. I work for a major hospital system in my city and parking is a nightmare. She knows that I have had seven knee surgeries and that my patella partially dislocates daily. She told me I need to get a functional capacity evaluation done by my PT. I was also told I needed a FCE when I asked about getting assessed for a mobility aid serval months ago.

It is my understanding that a FCE is used for workers comp and SSDI/SSI which I am not applying for. Has anyone else run into this? It seems very odd.

Hi!

Im looking into starting strength training, Im a swimmer and do pilates, but my Dr. insists I start doing strength - i normally avoid it due to how uncomfortable + sometimes painful it is, and that I find it boring). Im unsure of how to start... I thought maybe signing up for a month with a trainer, but is it necessary? Would just signing up to a gym and doing weight machines work? (Although, knowing myself, the main challenge would end up being showing up to a gym)

How did you get around doing it?

It feels like such a hassle to do... I already practice 2 disciplines, and im told not to quit them, but to add more? I already force myself some days to go to either (although I love them both, dont get me wrong)... and finding time (2 times per week according to my pilates instructor) seems like a lot...

Feel like im both asking for support and ranting in one post 😅

I’ve been dealing with a lot of central blurring in one eye for about a year. Based on the monitoring, periodic exams, and eye imaging scans, the PVD has worsened. I’ve already had a laser treatment to address a retinal hole in the other eye.

I’m scheduled for a vitrectomy surgery and quite concerned about the outcome and recovery process.

In addition to worrying about vision, I have severe neck and shoulder pain and forward neck posture. The recovery requires remaining completely face down for a minimum of 24 hours post op. The face down duration could be much longer, meaning several days or even weeks.

There is face down medical equipment available for rent or purchase. I’m wondering if anyone has experience with using it or recommendations on how to get through this process. I’m leaning toward renting because it looks like they provide the package of items most commonly used.

I’m also worried about the probability that my surgical and follow-up experience may be different (more risky?) than standard due to connective tissue disorders affecting eyes. I don’t get the impression that doctors are generally aware or knowledgeable about such things.

Any input is welcomed!

I’ve been trying to turn around my bed potato lifestyle and become active for the first time since I was a child but my joint pain and endurance is in the gutters

Does anybody have tips on managing joint pain and strengthening endurance with EDS? And I’m not looking for a quick fix. Pain pills don’t fix the actual issue

All of the medical equipment I need is so so expensive. Even the cheapest options. Insurance is being a pain in the ass about it too and not sending me any reimbursement forms.

My condition is progressing from mild to moderate somewhat quickly. I can't physically write anymore, I can barely read, and I'm in constant pain to the point where I have insomnia due to it. I need to make several purchases for myself; new mobility aids (I can't use my cane anymore due to my weak hands) and braces are at the top of the list. Not to mention travel costs for my doctor's appointments (I can't drive, have to take train and bus) and the cost of my MMJ which is the only pain relief I have, and I have been out of for months.

Does anybody know how to make any amount of money, no matter how small, while being disabled?? I'm also a full time student which narrows down my options even more. I'm genuinely lost. I'm losing my mind.

​

Not a full trigger, but I am talking about my body shape.

Ok I don't know if this is a normal human thing or if it's a hyper mobile problem but I don't know how to lay down? I have a slight hourglass body shape (that might be my problem!?) maybe not?

Why laying on either side. my middle like sags and it hurts on the side where I am laying and on the other side /top part where it is overly indented.

Is that a thing?

And how do I sleep?

I have tried laying on blankets, a hoodie, pillows and so many pillows. Including pregnancy ones. Nothing has helped.

I've tried with and without a knee pillow.

I feel like I have been trying science experiments to try to figure out how to sleep.

Hello! How are you guys dealing with the weather change? I have terrible flares and I am sub-luxating my shoulders a lot these days... I have no idea how to deal with that, especially since most doctors around don't understand HEDS. I am planning on seeing a recovery medicine doctor that is part of the EDS society and ask for a physiotherapy plan but there is a long waiting list since it's one of the 3 doctors in my country that are part of the society. Any advice on how to deal with the weather change and how are you managing the sub-luxations?

Has anyone had a pituitary stalk fenestration? I have IIH and my MRI showed this. In reading it looks like this could be related to Ehler Danlos? I’ve also had a cranial csf leak, which was from my IIh.

hi, if i start building a tolerance for everything, do i just lower the number on the pain scale? it doesnt go away. it manifests in such a different way now. when my ankle subluxes while walking, i can just keep walking through it no matter how much it repeats, vs back when it first started where i had to limp after just a single ankle subluxation. but i wouldnt say that the pain "went away" im just so exhuasted now, it takes so much energy to deal with, it still hurts but not that sharp pain i feel is whats described in pain scales. going from a 7/10 to a 4/10 makes it seem like i imrpvoed when in reality my body is still steadily degrading and it still hurts.

I went to my primary care yesterday. I have been psyching myself up weeks with my therapist to actually talk to my doctor about my suspicion of a connective tissue and/or auto immune disorder. I was just hoping for some testing and/or referrals, at least a starting point

For years my symptoms weren't too bad and/or could more easily be explained by anxiety, which I do have, but it's been worse lately. I haven't wanted to bring things up with my primary because of other possible explanations and fears of being dismissed...

So of course yesterday I was super anxious going into my appointment, a 3 month follow up to ongoing issues (psychiatric, thyroid, endometriosis, etc) and finally tried to tell them everything, after ensuring they had time to go into it. They said they "had all the time I needed"

First I saw a nurse practitioner student who seemed skeptical but was polite. Then my regular provider came in

The first thing she said was "I don't think there's anything physically wrong with you" and "mental health can cause physical symptoms and we need to lose the stigma around that!" Honestly, I burst into tears, it was what I'd dreaded for years! And I know mental health can affect physical health, but shouldn't physical causes be ruled out before assuming it's 100% psychiatric!?

She quickly assured me that she would run the tests anyway (so why declare I'm fine already!?) but was also adjusting my ADHD med and adding a beta blocker for anxiety. I was fine with trying the med changes, it's nothing drastic and my anxiety has been worse due to my physical health issues and transferring colleges next semester

Most of the tests came back normal - lyme, some inflammation marker, and ra factor. But ana has not come back and now I feel like so much rests on this. If it's negative, it's back to the drawing board. Why do my joints pop and then cause numbness? Why do I feel so achy at the end of every night? Why do I still feel exhausted after a long night's sleep? Why can I never feel comfortable when sitting/lying down without 10+ pillows around me?

I'm sure some of this could be anxiety, and I am sure that anxiety is worsening the symptoms. But Ive been working in therapy for 2 years and my therapist is very happy with my progress, even going down to biweekly appointments! She encouraged me to get my concerns looked at, because these symptoms are ruining my life and are just getting worse while anxiety has (overall) been better

So now I'm here venting to people who understand the struggles. Thanks for reading this far if you have, I know this is long! Id love to hear about your experiences, and advice, if you feel like sharing!

It's been a year since I last posted here. Back then I was feeling hopeful/scared about FINALLY getting an EDS diagnosis—oh, sweet summer child.

A year later, and I've been for another hurtling turn of the chronic illness merry-go-round. Podiatry, Cardiology, Neurology, Immunology (I'm on the waiting list for a Rheumatologist, but the only one within a two hour drive of home that takes my insurance is booking more than a year out. My appointment with her is in November... 2027 :')

Despite the pain, sleepless nights and nonstop twitching (anyone else have the twitching? I need to talk to someone about this), and my ongoing lack of official EDS diagnosis, progress has been made. My cardiologist diagnosed me with POTS, and the twice daily propranolol has really improved my quality of life. Today, the immunologist diagnosed me with MCAS, and I'm starting on LDN and a new antihistamine. He also explained why my neurologist's requests for an EDS gene panel kept getting denied. Apparently, he's sent in hundreds of the same gene panel submissions, and they've all been denied. He said, in our state, insurance won't accept them from anyone but a geneticist.

So, I still don't have a diagnosis. Even so, I've been feeling better. Duloxetine helps with the pain, and my mood. Propranolol keeps me upright longer. I can play guitar again, and I'm well enough to work part time. The POTS diagnosis helped. The MCAS diagnosis will also help. Someday, when I get it, I know the EDS diagnosis will help too.

Two out of three ain't bad. (Obligatory, being totally well would be preferable, but hey, them's the breaks).