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Hypermobilty Syndrome

claraelle

Hello

I am still quite new to using the forum and I am so grateful for the advice and information I have been given since finding Scope.

I wasn't sure where to post this - but I am wondering if there is anyone who experiences hypermobility syndrome with joint and body pain and boom and bust type tiredness? or maybe hypermobility spectrum disorder ( I was told recently this is the new name as hypermobility syndrome is not an outdated name for the condition)

I have been diagnosed also with palindromic rheumatism and I am often told my symtoms are due to inflammation however no blood test ever seems to detect inflammation. In fact they say my blood tests just say that my immune system is unhappy and I have been told different things by different rheumatologists.

I have other ongoing issues, like migraines, headaches, IBS, gallstones and I feel like there must be a link with everything however when I asked consultants they say there is no link.

I would keen to hear from anyone who relates to my experiences and I suppose if anyone has the same type health issues too and of course … I will be happy to hear from anyone!

Thank you

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Comments

JonnycJonny

I know there is a regular contributor to this Forum who also has a condition that causes joint hypermobility among other things - they might reach out and Comment if they see the title, but I cannot guarantee it. You are not alone.

Very best wishes in managing your condition.

Albus_Alumni

Heya @claraelle I think the best person to speak to (off the top of my head) would be the wonderful @chiarieds they're a veritable font of knowledge with all things EDS and related issues. 😊

chiarieds

Hi @claraelle - good to 'meet' you (& thank you for the tag @Albus_Scope )

I have the hypermobile type of Ehlers-Danlos Syndrome (hEDS), which has similarities with Hypermobility Spectrum Disorder (HSD). I also have Chiari 1 Malformation which is associated with Ehlers-Danlos Syndrome & other heritable disorders of connective tissue.

My last GP was very interested in all types of 'arthritis,' but didn't work out I had hEDS. I also saw rheumatologists, geneticists, an orthopaedic consultant, a neurologist & a neurosurgeon (some with my family, some on my own). What we need is to have all such consultants in one room discussing our symptoms!

Like yourself, I had blood tests which indicated I was seronegative for rheumatoid arthritis, then this GP said, but these tests can be a false negative/positive, so I was no further forward.

A diagnosis of hEDS was confirmed in myself & son by a geneticist, who was also a dermatologist, who specialised in connective tissue disorders. Sadly now it's difficult to see a EDS geneticist unless you have one of the more rare types of EDS.

However, you're correct, hEDS/HSD is more than something which 'just' affects your joints, tendons, etc. If you haven't come across the EDS GP's toolkit then it may be helpful if you look through this, & then you may be able to show that other symptoms you have may indeed be linked to hEDS/HSD. Please see:

https://gptoolkit.ehlers-danlos.org/ It's not completely up to date, but it is a beginning. I actually usually learn more about hEDS from the American Syringomyelia & Chiari Alliance Project (ASAP) especially their videos of past conferences:

https://asap.org/conferences/2023-conference/2023-conference-videos/

Do also look at videos by Dr Anne Maitland on Mast Cell Activation Disorder which can be a comorbidity of hEDS, e.g.

https://youtu.be/wz1Lb2rjHag

claraelle

Thank you jonnycjonny and Albus for your replies, that's much appreciated!

Chiarieds, thanks for your reply and good to meet you too! Thanks for sharing a bit about your diagnosis and experience in arriving there! It sounds like it has been a lot of exploration for you and your family to get further forward to understanding what's going on for you. My son has hypermobility and was diagnosed when he was around 10.

I really appreciate the links and video you have shared too and I will have a look at these. I also recently joined Ehlers Danlos Society and they have been very informative and supportive too.

chiarieds

You're very welcome @claraelle - I think you'll find the video by Dr Maitland of particular interest as she's an immunologist & allergist, & you'll see she talks about EDS & some of the problems you have which may be associated with this, particularly in light of you saying that Drs have said there's some problem with your immune system!

This video is from ASAP & is more up to date than the ones she has given to EDS patients.

michael57

https://forum.scope.org.uk/discussion/comment/935133#Comment_935133

well i never is that where you got your user name from very clever indeed i am impressed

chiarieds

Yes @michael57 - a combination of Chiari (pronounced key-ah-ree) 1 Malformation + EDS, which is an abbreviation of Ehlers-Danlos Syndrome. Unfortunately Chiari 1 Malformation is associated with EDS in some of us.

I had researched & thought my family likely had not just EDS but also Chiari I Malformation at the same time as a New York neurosurgeon was finding some of his Chiari patients also had EDS, so we kept in touch, & he helped me raise awareness of this association here in the UK.

michael57

https://forum.scope.org.uk/discussion/comment/935146#Comment_935146

thanks for explaining i will have forgot it by the morning i just call you all rose lol

durhamjaide2001

helllo from a fello hyper mobility human

claraelle

Hello durhamjaide2001

Thanks for saying hello! Through your experience of hypermobility is there any advice you would give in how to manage any of the symptoms? No pressure to respond as I realise that could be a very large topic to get into.

chiarieds

Hope it's OK to say a couple of things @claraelle - I apologise if I didn't directly respond to your query. I think the 'boom & bust tiredness,' which might also include increased pain, is because we need to pace ourselves. Sometimes by doing too much one day you may pay for it over the next day or two. 'Pacing' took me way too long to put into practice, even tho I knew about it as a retired physio., as it impacts on other disorders. I do otherwise put the exercises I used to teach into daily practice! I'd suggest, if you haven't already done so, to ask your GP for a physio referral.

hEDS/HSD is likely more common than previously thought. When I first started looking into EDS some 25 years ago the incidence was thought to be 1 person in 20,000; 10 years later 1 in 10,000, then 1 in 5,000 was mentioned, but now thought likely much more common than that.

There are also similarities in the pain that those with hEDS & fibromyalgia both have. I won't say I exactly read medical papers for fun, but I do read relevant ones. Fibromyalgia can also be another comorbidity of EDS. On a webinar a year or so back, I asked a physio who had an interest in fibromyalgia what proportion of her patients were hypermobile, & she said more than half, which didn't surprise me from what I'd read.

I'm not trying to add to a list of possible comorbidities, rather emphasise that a physio may well be versed to help.

claraelle

Hello @chiarieds I hope you're doing well and have a nice weekend ahead.

I am so sorry I am only just replying. I have been wiped out with a migraine for a couple of days this week and it takes me a while to get caught back up with everything.

I've watched the video you posted - really interesting and also I am aware how complex these issues are involving the immune systems and all these other systems in our bodies. I'm also aware the conditions you are living with must be an awful lot to manage. I do hope you have found some way in that.

I appreciate you sharing more of your thoughts, but I didn't feel you hadn't responded directly at all. All you have shared is very helpful so thank you :)

When I was first diagnosed in 2017 I did see a OT and a podiatrist. I saw a physio prior to my diagnosis, they thought my symptoms were inflammatory based. The OT facilitated a group on fatigue management which covered pacing and yes I hear you. The boom and bust is so linked with over doing it for me too I guess. It's difficult not to try and get a lot done after a time of what feels like inactivity either due to pain or mood or motivation. I have adhd as well and the combination of having these times when I am so energised and highly motivated that it's hard to actually stop I don't think this helps my body pain either.

I have just put in a referral to see a physio so thanks for the pointer that I am in the right direction with that.

I have a colleague who has fibromyalgia and I relate to a lot of her symptoms but when I recently asked the rheumatologist if I could also have fibromyalgia they said they didn't think so. I think I am struggling at the moment to find a health professional that understands what I am experiencing and how difficult I find it to manage.

The option from the rheumatologist seems to be to restart hydroxychloroquine again (I was on that for 2 and half years) or that's all the options available to me. I am feeling more hopeful a physio might be able to help in some way.

durhamjaide2001

https://forum.scope.org.uk/discussion/comment/936645#Comment_936645

I don't really know because I have lived with it all my life so I don't know anything different