Hey all, I hope this is allowed (I don't think I saw anything in rules to say it isn't), but I was looking to get some thoughts on what I think may be EDS (perhaps hEDS) and my next steps.
This post will probably be pretty long, so I apologise in advance for that.
So, I was diagnosed with Fibromyalgia about three years ago. The GP also thought I could have ME. Generally speaking, I have been in constant widespread (joint and nerve) pain for the past 15 years, but every few years I seem to deteriorate further.
I haven't experienced dislocations, but perhaps subluxations. I honestly am not entirely sure, though I feel like I should be. My joints are extremely tender, get worse with movement, and I click frequently (which seems to also cause pain).
I don't have stretchy skin and I'm overweight. Basically, what I'm saying is that I don't believe I will be listened to by doctors because I don't fit the generalised view of EDS.
I also didn't think I have EDS (a few of my friends do) until people started mentioning the possibility to me. After having done a lot of reading, I'm starting to see it might fit, but I've experienced so much invalidation, weight shaming, and placing blame on my mental illness from so many GPs now that I'm scared to seek help. As such, I've decided to raid the little house deposit savings I have and seek a private diagnosis, in the hopes I can be referred back to the NHS for treatment.
So, I guess what I'm looking for from the group, if possible, is some thoughts on whether you think my symptoms align with a diagnosis of EDS. I'll list what the worst ones are for me below:
Injuries: last year, I herniated my disc from simply turning around on the sofa. I've been in constant pain since and am due to see orthopedics next week.
Bladder Control: a year or so ago, after experiencing bladder issues for years, I lost a lot of my bladder control. I need to pee every few minutes, though when I try, it often takes a long time to actually be able to, and I've had to wear pads now for months due to a lot leaking. Sorry if this was TMI!
Possible Subluxation: a bone recently popped out in my wrist and has been painful and tender for about a month. I've been too scared to go to the GP. I eventually tried pushing it back in myself and it seems to have shifted somewhat, but isn't exactly as it should be or was before.
Digestion Issues: I've long believed I have GERD (silent acid reflux), but only recently discovered those with EDS often have digestive issues. I had a really bad episode, lasting six months two years ago, but it dissappeared with only a few symptoms remaining. I am currently going through two months of not being able to eat (or even drink water) without belching, dizziness, bloating, gasping for breath, heart palpations, etc. I'm so, so uncomfortable and scared to eat. I've been told by friends who have it that this also sounds like POTS (I also experience a lot of dizziness upon standing) and MCAS.
Food Allergies or Intolerance: this one has been with me since I was a child, but the foods I can eat without symptoms are becoming less and less. I recently discovered soya is a big no-no, feta recently made my mouth swell up after years of tolerating it. The list goes on.
Mobility: honestly, this is where I tend to gaslight myself because I'm overweight, but I know other overweight people who don't live like this, so I'm trying to be kinder to myself and validate what must be something physical. So, I try to walk from the car to work (I am a jewellery maker and have my own studio, so can luckily work to my own pace). The walk is roughly ten minutes, but it is enough to cause a flare-up for the rest of the day. That said, walking is infinitely less painful than standing. Even before my back injury, I have long (maybe the past 10-15 years) experienced severe pain in my lower back when standing. The only thing I've found to help with this is if I sway gently from side to side. The gentle movement seems to help me stand for a little longer, but it's still agony.
Issues Sitting: I don't know if this is anything to do with EDS, but I have been unable to sit upright on a sofa or most chairs for longer than a few minutes without experiencing severe pain in my lower back and legs. I often cry because I want to sit up, but I always, always have to resort to lying down.
Joint Pain: All my joints seem to hurt, but the worst is, by far, my hips. As a side sleeper, I find it terribly painful to try to sleep at night. It feels like I'm lying on a brick! Ive also had an extremely tender ribcage for the past two-three years, so much so that now my partner can't cuddle me without excruciating pain and pressure.
Weakness: again, I'm unsure if this is related to EDS, but I haven't been able to hold a book for about ten years, maybe longer, because I physically cannot bare the pressure it puts on my wrists, the weakness it causes in my arms, and the pain it causes in my neck and shoulders. As such, I read, lying down, with a Kindle. It's the only way it's manageable.
Uff, I'm so, so sorry! I know this has been an essay! I just wanted to provide as much information as possible in order to get some feedback.
Looking at the EDS diagnosis, I'm pretty uncertain if I have it (some questions I don't understand, others I don't have answers for), but reading about EDS in forums, talking to friends with it - that's when I start to think... this could be it.
I guess I'm wondering if I'd be wasting time and money to see a specialist when this might all be something else.
Thanks so much for reading. ❤️ #EDS #EhlersDanlosSyndrome #HypermobileTypeEDS #ChronicIllness