Am I hypermobile or just flexible?

[Charlie276]

I am what I’ve classed as flexible for a long time and seem to meet a few points on the Beighton scale from judgement at home. Can I see a physio in the uk for diagnosis as I don’t want to go to the gp again without an expert opinion. I feel like I’m always there with a new issue. I’m wondering after looking into this if maybe this might be the link between all of the unanswered things I’ve been suffering with for a long time.

Also is seeking a diagnosis worth it? Is there treatments, do you get any better understanding /different treatment plans from drs etc?

I think I meet all points but the thumb touching the wrist but I don’t know if that’s normal for a lot of the population also.

Thanks

[cyberbarn]

Hi, I think you idea of starting with the physio is a good idea, because then when you go to the GP you will have a professional opinion already. Have you seen the toolkit for GPs?

gptoolkit.ehlers-danlos.org

That should help both the GP and the physio if they are not familiar with hEDS/HSD

Does having a diagnosis help? It can do, if it is the correct one. But it might be difficult getting a formal diagnosis because rheumatology won't do them anymore, and GPs seem to be too busy to use the toolkit. But it is also worth keeping in mind that there are many different connective tissue disorders, and the symptoms often over lap. It doesn't mean that you have them all, just that many share the same symptoms but have different underlying causes.

And this is where the problem lies, treatments treat the symptoms for most connective tissue disorders because there is no cure. Sometimes it is worth just looking at the symptoms and dealing with those rather than trying to get a diagnosis that explains everything.

For instance if you have problems with feeling faint when you stand up, that could be a type of Dysautonomia and you could see a specialist in that area, which usually comes under cardiology. If you have gut problems, then that would be a trip to a gastroenterologist.

There is a saying, if you can't connect the issues, think connective tissues. But there are over 200 different connective tissue disorders!

I hope that helps a little?

[Charlie276 in reply to cyberbarn]

Thank you for your reply and for the link with the toolkit which I can maybe give to the physio or gp. Yes it seems getting a diagnosis for a lot of things rheumatological is very difficult. I diagnosed by a rheumatologist once upon a time with UCTD and more recently have also had poly something and something else but never feel like they’ve really fit properly. I’ve also never had my mobility tested. I have a dry mouth also but don’t meet the criteria for sjorgens but I know autonomic issues can be a cause as can other autoimmune diseases. My rheumatologist is lovely but only has hydroxychloriquine or other immunosuppressants to offer and I don’t feel I need them, my pain is more mechanical, stiffness etc than red hot burning like in RA for instance.

At least now being aware that this could be an issue and the cause of a lot of my symptoms I can work on improving strength to reduce pain

[B3ndy]

Can I ask how old you are? The Beighton score can be 'weighted' for age. I was EXTREMELY flexible right up to about my mid thirties. Then I was just very flexible for a while, in my 50's a physio said - 'you're very hypermobile'. It was only at that stage did I realise hypermobility was a 'thing' and that it wasn't good. I had been dealing with sub luxations, joint injuries, pain etc for years and always used to tell people that I was just 'badly put together'. I now consider myself quite stiff and cannot do a lot of the things on the Beighton scale, but that can happen with age, I'm 63 and only got a diagnosis of Hypermobility when I was 61 although by that time I'd done a lot of research and had realised that's what connected (no pun intended) all my different issues. I do feel getting a diagnoses has helped a lot really as I no longer feel like a lazy hypochondriac and it's good to be able to explain with a genuine reason why I can't or won't do certain things. And my doctor is more helpful with things like pain medications and referrals for further treatment/investigation.

[Charlie276 in reply to B3ndy]

I will be 40 in March, what you explain is how I feel - I dread going to the drs, I actually feel sick to my stomach when I’m on the phone making an appointment. I have been to the drs with so many issues and have so many odd symptoms yet they can never seem to find a solid answer. It makes me feel crazy and like I’m a whiner but honestly it takes months of a symptom for me to go to the gp for something and half the things I don’t bother. It would be nice to have an explanation and be able to see the drs I need to see for the more autonomic and possible mcas which I’ve read can be connected.

I don’t think I’ve ever dislocated anything (I’m sure one would know). As a child/teen my party trick used to be doing the crab from standing or putting my legs behind my head etc but I never had any unusual pain back then and I thought most kids could do that! I could never reach a full split though, very nearly but no completely. I did however at one point have an unexplained back pain issue that had me unable to get off the sofa at about age 14, and my big toe joints became very inflamed for periods of time (bad shoes). My left knee swelled at age 19 and remained swollen/fluid until early thirties when I had a few steroid injections but I think what helped or was doing exercises to build up strength for the knee.

My worse issues with pain are my neck and currently my jaw, my jaw shows nothing on X-ray but I swear it moves out of place (my upper nightguard has my teeth indents in it yet some nights my lower teeth are the complete opposite side of where the indents are like I’m wearing someone else’s. - I don’t think dislocated as it doesn’t lock or get stuck - infact I can open very wide which is why they say not tmj.

Other people seem to have fantasist luck with chiropractors or osteopaths. I come out in more pain and it would make sense that perhaps they move you out of range.

Thank you for your reply. I think I will start with a physio - get that opinion and then possibly see the gp. I will also mention to my mum as she’s been in pain my whole life with never a solid explanation, she also has extremely thin skin which tears at a slight knock which started to happen in her late 40’s/50’s - she also had a heart attacks at early 40’s and although initially diagnosed with rheumatoid arthritis many years back I don’t think she had the symptoms and repeat testing shows nothing, the hydroxychloriquine they put her on never helped either.

[B3ndy]

Wow Charlie, from what you've said I could probably diagnose you from here! Your Mum has classic symptoms of EDS, fragile skin, pain, (mis)diagnosis of RA. I'm guessing you've inherited it. I did have a really excellent book, but I lent it to someone and never got it back, it was spiral bound and I think it was published by a company called Red House(?), it went through all the different aspects chapter by chapter, I bookmarked lots of pages and it really helped me understand that I wasn't going mad or a pathetic hypochondriac. Good luck and please don't give up, I'm sure a proper diagnosis will be beneficial in many ways.

[Charlie276 in reply to B3ndy]

Thank you for your kindness. Yes she has sadly had lots of issues, her skin nowadays is covered in red blotches and a small knock leaves her looking like she been beaten up. The closest thing I’ve found is that looks like it is senile purpura which I know can be common in older age but hers started in her late 40’s I think. Neither of us have stretchy skin though. She also has terrible gut issues, she’s basically stopped eating any healthy foods as they all cause her terrible stomach pain, she’s been told diverticulitis but on the last colonoscopy she was told it wasn’t active.

Thank you for the book recommendation, I shall see if I can hunt it down and book with a physio to see if they think it’s worth me going to my Gp for evaluation (when I can build up the courage lol)!

All the best and thank you again for sharing your story, sorry you’ve had to go through everything you have.

[OldTed60]

I’m only newly diagnosed with hypermobile spectrum disorder age 60 - but I believe EDS can be more than hypermobile joints and subluxation. My late mum had the hallmarks of classical EDS - as do I. Her gut and skin were very typical and she had major emergency surgery to remove a huge ball of gut which had kinked up and formed a knot in her small intestine when she was in her 50s. I can only say this with hindsight now of course but the surgeon told her and my dad that he’d never seen anything like it in his entire career.

I have always been told by physios that I’m hypermobile. But I’ve been under various rheumatologists for 12 years and none have picked up on this. I asked for one to run a beighton score on me and he didn’t know what to do so just pinched me a bit and wiggled my thumb and told me that my knees likely just had loose cartilage so no EDS. This was 2019.

I was already diagnosed with seronegative Sjögren’s and hypothyroidism plus Raynaud’s and small fibre neuropathy/ Erythromelalgia, scoliosis and degenerative discs so my next rheumatologist focused on these. But then a rare scleroderma antibody showed up highly positive and I was tested and retested for systemic sclerosis - no one could agree. By this time I was maximally treated for my autoimmune disease again so we settled on overlap connective tissue disease.

Then, half way into the pandemic, I was tested for gastroparesis and, to my rheumatologist’s concern, the results showed I had this severely. Then came slow colon transit study which also showed severe dysmotility and then another gastroscopy showed worsening gastritis, polyps and hiatus hernia plus silent reflux. But still the local scleroderma team wouldn’t accept my diagnosis and said all was Sjogrens + UCTD.

I’m now on a liquid diet and likely to need illeostomy or gastric pacemaker or TPN in the near future.

So I trekked to meet the lead U.K scleroderma Professor privately 7 weeks ago privately for some diagnostic clarity. He found I met full the criteria for systemic sclerosis and also diagnosed EDS - although he called it hereditary hypermobile spectrum disorder in his letter. He said it was mostly in my skin but also noticed that I’m diagnosed with scoliosis and said that this had been masking the usual skin tightening of scleroderma. I could have hugged him for confirming what I’d long suspected ie rare overlap presenting unusually because they are polar opposites in connective tissue disease terms. My rheumatologist was pleased to have this clarified at last and has added both to my long list now.

I don’t know how much of this story of mine will be for you as I have no idea of which subtype I have still. But from reading up a bit I do believe it’s likely to be classical/ cEDS.

Re your poor mum - her gut issues could be dysmotility ie Gastroparesis - which requires motility tests to confirm and comes under the heading of neuro-gastro. Take care and I wish you and your mum much luck 😊

[Charlie276]

Thanks for sharing you story Ted, wow what a lot of issues you’ve had to contend with. Do they have medication that helps your symptoms or do you just have to live with everything? I know hydroxychloriquine is used for sjorgens but I’m not sure what the treatment is for scleroderma. I find it quite astonishing that rheumatologist don’t test for hypermobility considering the beighton scale can be done there and then in office without the need for scans or labs. My mum has been on acid reflux meds for as long as I can remember. She’s been diagnosed many times with gastritis. She’s had colonoscopies and the camera pill and other investigations but the only things they’ve said was diverticulitis. I will mention what you have said regarding neuro gastro. Drs seem very reluctant to refer these days so as she was seen by gastro not long ago I don’t know if they would but she can try.

I asked her the other day if I was remembering correctly that she could touch the floor from standing and she said she still can. She’s 60 now so I will pass on the helpful information everyone has given me and maybe she can use it or at least work on strengthening her muscles as she does no exercise.