Does anyone else have a hypermobility spectrum disorder or EDS? (Ehlers-danlos syndrome)

Hey everyone,

I am diagnosed with HSD (hypermobility spectrum disorder) by a consultant rheumatologist in my area but my diagnosis is being reviewed for hEDS (hypermobile ehlers-danlos syndrome). These were both explained to me as inherited connective tissue disorders and are almost exactly the same but the diagnostic criteria for hEDS is stricter. There are 13 types of EDS. A diagnosis of HSD can change to hEDS over time sometimes. But the point of this post is to see if anyone else has either condition (or any type of EDS) and ask if anybody has any coping tips? HSD used to be known as Joint Hypermobility Syndrome and Benign Joint Hypermobility Syndrome. Some specialists/GP’s use these terms but they are outdated.

The symptoms I suffer with extremely hypermobile joints (I scored 8/9 on the Beighton scoring scale but was told the majority of my joints not tested on that scale are hypermobile too), loose/unstable joints that dislocate or sublux easily and click a lot, chronic joint pain, headaches, severe fatigue, easy bruising, abnormal scarring (I was told atrophic and hypertrophic by my rheumatologist), poor would healing, gastrointestinal symptoms, nausea/vomiting, autonomic symptoms (I am being investigated for POTS which is common with hypermobility conditions), I have extremely poor proprioception (basically where your brain isn’t aware of the position of your joints which can be perceived as clumsiness), issues with my jaw, slightly stretchy skin which is also extremely soft which isn’t a problem for me but my rheumatologist said it’s a classic sign of hEDS, I am prone to spraining my ankles due to my ankles being unstable,

 

Sorry there were some things I thought had been posted.

I meant to add that I have been using KT tape and attending physio for joint stability and taking prescribed pain relief and medication for GI issues from a doctor but was wondering if anyone who suffers similarly has any suggestions for further relief? as this isn’t always effective.

thanks! Hope everyone is having a great day/night

 

It isn’t very nice but I cope as best I can, I have days that are worse than others; I have pain and fatigue every day but it’s not as bad as others sometimes. It is absolutely excruciating sometimes though. All the other symptoms happen most days, it’s very rare that they don’t apart from dislocations/subluxations, they aren’t as frequent now I wear the KT tape every day. I have a great support network so that helps too.

I’m so sorry to hear that, Parkinson’s sounds horrible from what I know about it (I have replied more about this in a paragraph below with something that may be of help). I’m glad you have adjusted to a degree though. Do you have family and friends and a partner (sorry if that is nosey, I was just wondering) around to support you?

Sadly there is no cure for my condition; it can only be managed with painkillers (stronger ones obviously have to be prescribed), physiotherapy and supportive measures such as KT tape and joint braces. As I said above I use KT tape because braces seem more restrictive, I can move around normally with the tape and you can get various colours, I use pink tape. It’s a kind of fabric material that stretches and is very sticky and stays on for 3-5 days before you have to replace it. You can even shower with it on.

Oh that sounds so horrible, I wish they could do more for you. Are there any natural remedies you could try to maybe ease symptoms a bit? I don’t know much about Parkinson’s so i’m sorry if I seem stupid. Also I wondered if asking your doctor could refer you for proprioception physiotherapy? I have bad proprioception as mentioned above which can affect balance in some people with hypermobility conditions so I was wondering if that may be worth looking into. It’s different to normal physio but I won’t know much about it until I start it. My physiotherapy is on the NHS (i’m not sure if you’re in the UK but it’s our healthcare service which is free for everyone- every single medical service is free so it’s pretty amazing!). If you would like I could let you know how I get on with it? I know our conditions are very different but maybe it could help your balance. You could ask your doctor if you want to try it. Thank you, I wish you well too!

 

Aw thank you, so do you. I’m not always positive but I try my hardest because I know this condition will never go away so I just have to deal with it. I’m only 25 so I can’t always live the life I want to which can be a bit embarrassing sometimes but I’m usually okay! Aw that is very kind of you, I sometimes feel as if I am. I knew that people have to pay for healthcare in the US which I don’t think is right, everyone should be able to access it. I have heard of Medicare but i’m not entirely sure what it is. I will write on your wall about the proprioception physiotherapy. Aw thanks! I will keep you updated on how i’m doing but I will never recover sadly. I would like to hear how you are doing too! Yeah of course i’ll keep in touch.

 

I’ll definitely tell you about it if you’re interested. I don’t know very much about your condition either so it would be interesting to hear about it. I’m sorry it has been so difficult for you but you are completely right, life is too precious to just give up. Wow that’s amazing- it sounds like it completely changed your like for the better. What does the surgery involve? Yes, it’s good to remember that word. Slowly. Yeah that would be brilliant! If you don’t mind me asking, I was wondering what your story was to realising you’re trans? I’m not sure what your sexual orientation is but if you would like to hear mine it’s under ‘coming out stories’ in the coming out part of the forum. I am a cisgender woman and I don’t know that many trans people so it would be interesting to hear if you didn’t mind telling me but it’s completely your choice.

 

Shall I tell you about it here or on your wall? You are more than welcome, I like to be caring. It makes me happy and it makes me happy to see others happy too. Oh wow, those sound like pretty serious operations. I have read that they keep people awake during surgery on the brain, I think it’s to check if the surgery affects the function of the brain but I may be wrong and you would probably know much more about it. I imagine it would’ve been very painful to be awake when they operated on your chest. Was your recovery time long? I imagine it would’ve been painful as you recovered? I had my appendix taken out when I was 11 and the recovery was painful but your operation was so much more serious and in different places. That really is amazing how much it helped you- I am so pleased for you! It sounds like it changed your life for the better. Yes, it is exciting!