My main issue is balance and the feel... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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My main issue is balance and the feeling like the lower half of my legs are wooden.

aliD47 profile image
aliD47

So newby as I've said in other posts waiting for my treatment which I'm told is physio, referral to dizziness n balance clinic. I'm taking tablets for the dizziness n balance issues which kind of help a little. But weird if it's in my head I don't know my balance is worse when I'm in areas like shopping centres n supermarkets I can hardly walk. It could be a coincidence, I don't know.

My main issue is that I feel tricked sometimes as I get up feel on top of the world and legs doing brill. Then I seem to get smacked with a kipper at certain times of day. I'm fortunate that I'm more mobile than some of you on here and for that I count my blessings. But God I find this frustrating. Does any else have balance issues and what treatment are you having ?

Have you found something that helps you?

18 Replies

Hello ali. Not easy living with this. You’ve perfectly described these aspects of my mix. I’m 65 and have been managing vertigo balance probs + wooden numb legs for decades. Physio balance training has helped me and still does. So, i’m glad you’ve been referred for this. I also find that v carefully pacing my activities and getting plenty of sleep helps too.

But what has really helped me is discovering that, alongside my hEDS, i also have autoimmune connective tissue conditions underlying my version of these symptoms. It’s turned out i was diagnosed with lupus as an infant, but the diagnosis got lost until my 50s. Because you mention these symptoms feeling worse in places with artificial lighting (supermarkets, shopping centres) i am wondering if there is any possibility you may also have a lupus-like underlying autoimmune connective tissue condition - people with these can be sensitive to artificial light...i am: and yes it makes my balance problems worse...so i avoid being in artificial light for any length of time. And what helps most to damp down my balance etc probs is my daily lupus meds treatment plan (alongside all the self help lifestyle techniques + physio)

Am i right: you’ve been diagnosed with fibromyalgia? For what it’s worth: Sometimes fibromyalgia is simultaneous with both hEDS & lupus-like conditions...rheumatology just is slow diagnosing it all. If you haven’t already: hope you’ll let your rheumy know about these balance probs

On HealthUnlocked’s Lupus UK forum there are several like me with hEDS & lupus & balance probs:

healthunlocked.com/lupusuk

If you’re curious about lupus & lupus-like conditiins, the Lupus UK website has great info:

lupusuk.org.uk

Hope you’ll let us know how you get on with the physio training.

Take care & good luck

🍀🍀🍀🍀 Coco

aliD47 profile image
aliD47 in reply to Barnclown

Wow thank you for your reply

aliD47 profile image
aliD47 in reply to aliD47

This is so interesting as my mum had fibro lupus and rheumatoid arthritis. I'm currently trying to get correctly diagnosed as been told I have hypermobility ehlers danlos syndrome and chronic fatigue but I'm more convinced that its fibro as my mum always said it was hereditary but my rhematologist says different.

So this is definately a question I will be asking next time I'm there for sure. I'm due to go to a balance and dizziness clinic on the 5th Feb so that will be interesting I'm on medication for it. It kind of helps but only a little. I recently tried to go back to work n only managed 3 days before I had a complete wobble and couldn't cope. So I've got a lot of changes to make in my life right now. I'm only 47 would like to work still but I honestly don't know how I'm gonna cope. At home at present I'm great and that's because I can pace myself. But I'm not severe enough I would imagine to be on disability. So not sure what I'm gonna do.

I have terrible balance and dizziness problems. Particularly when I am ill. That makes it worse. I have had no official diagnosis in spite of a family history of hEDS.

aliD47 profile image
aliD47 in reply to marieflynn

You need to find out and get some help. I'm hoping this clinic I'm off to can shed some light on my problems. Yes it's all connected but they may be able to offer some help. I try to keep optimistic even though I know my life is changing. I'm currently focusing on my diet and fitness as best I can and that takes my mind off my balance n pain worries

marieflynn profile image
marieflynn in reply to aliD47

I cannot get past my local hospital where the rheumatologist has said I do not have hEDS. That is in spite of family history and my history since childhood. I need to be referred to a specialist but it can only be done by a rheumatologist. She refused.

aliD47 profile image
aliD47 in reply to marieflynn

I ended up going to a private rheumatologist as I got told a 6 months waiting list and wasn't prepared to wait that long. Cost me £200 But now I have to wait for support and treatment on the nhs but at least I got somewhere.

marieflynn profile image
marieflynn in reply to aliD47

My appointment was a private one.

aliD47 profile image
aliD47 in reply to marieflynn

Oh dear, perhaps a second opinion then. Don't give up. If you have all the symptoms you need help. What about your family? Perhaps they can give you advise if they have it.

marieflynn profile image
marieflynn in reply to aliD47

One particular section of my family is most seriously affected and my daugjter helps as much as she can with advice etc. We are still working on getting extra help without a rheumatology referral. I think I might have to go to hEDS UK for advice. Trouble is I am ill again so do not feel well enough at the moment to take the trouble. Will get in touch with them when I am feeling bette. Problem is every time I am ill it makes my symptoms worse as well.

aliD47 profile image
aliD47 in reply to marieflynn

Go to a different private specialist we are all entitled to a second opinion. Even if you don't have hyper you clearly have symptoms of something so you need to find out. A lot of conditions interlink or appear to be some thing when it's something else.

marieflynn profile image
marieflynn in reply to aliD47

Unfortunately living on the Isle of Wight is rather restrictive. If hEDS UK cannot come up with some bright ideas I shall have to just be patient and the see the one doctor in my practice who is sympathetic. Alas he is only at our surgery every other week, is very popular and has a long waiting list.

aliD47 profile image
aliD47 in reply to marieflynn

Make an appointment now

Look into Vestibular Dysfunctional Syndrome I have hEDS & FIBRO & was just Dx with this. Had car wreck that caused or accelerated underlying condition. Our inner ears can be damaged by hEDS. MY balance is horrible due to this & need Bilateral Vestibular Therapy. Stores are horrible for me & I've endured Naseau for a year now. Hope you get answers...

Thanks I hope so too but doubt it to be honest. But heyho try anything at this stage.

I can really relate to you. This is my first post here but I've been a bit of a long time reader. A bit about my problems:

I was diagnosed with hEDS at 27 just over a year ago and have a nice (well, not so nice) mix of problems! On top of all the usual issues e.g. widespread pain, subluxations, fatigue, digestive issues, POTS, I've suffered from balance issues for quite some time but it worsened about 2 years ago when I developed debilitating vertigo. I have occasional flare ups but my problem at the moment is a general sense of disequilibrium and wobbliness. I'm 28 but at times I feel like an 88 year old and find myself falling over and having problems getting my body to do what I want it to do. It honestly takes all my effort and concentration just to be able to walk in a (relatively) straight line or get up out of bed without taking a tumble.

I've been seen by the balance clinic at my local hospital and they gave me some vestibular physio exercises to do which have helped to some extent. I've also been seen by Prof Julia Newton's fantastic team at the Newcastle Royal Infirmary for POTs but they actually specialise in falls and dizziness too. To top things off, my ENT consultant also incidentally found that I seem to have superior semicircular canal dehiscence (an absence/abnormality of the bone in part of the inner ear) which further complicates my balance problems. As far as I can tell, it looks like SSCD might be more common in EDS. I take betahistine and/or prochlorperazine when I need it to manage vertigo flare ups but try my best to keep up with the vestibular exercises.

My main piece of advice to you would be to ask for a referral to a balance/vestibular service as the tablets only really mask the weird signals your brain is receiving rather than 'teaching' it to compensate for them, which is where physio comes in. I'd really recommend a referral to Prof Newton in Newcastle if you also have POTS as they were fantastic and very holistic in their approach. However, most regions should have a good balance/vestibular team.

Also, to those who are struggling to get a diagnosis - please consider seeing a private specialist if it is within your means. I saw Dr Hakim and cannot recommend him highly enough. I actually work in the rheumatology department of a large teaching hospital and it's my opinion that our rheumatologists either don't know how to or don't want to diagnose or manage hypermobility spectrum disorders. The line I always hear is that 'it can't possibly be EDS because it's such a rare condition' and patients often get discharged with a diagnosis of fibromyalgia, 'lax ligaments' or the now-defunct diagnosis of benign joint hypermobility at best. Unless the consultant has a particular interest in hypermobility/heritable disorders of connective tissue, general rheumatologists, unfortunately, don't offer much support in my experience so please don't be put off or disheartened.

aliD47 profile image
aliD47 in reply to emmybuttons

I'm due to see a balance clinic on the 5th Feb and waiting for my physio. So it's starting to happen. I went private for my diagnosis as 6 months waiting list for nhs n wasn't prepared to wait that long but I have to wait for the physio etc via nhs.

How do you cope working with your condition? I'm off sick at the moment and I doubt I'm gonna get back. My job is too physical (working with the under 5s) .so I'm off trying to figger all this out.

Hi AliD47 sorry to hear you are having all those symptoms... I have got the exact symptoms and it’s really frustrating as I can’t do anything. Please what medication are you taking for the dizziness and balance issues ? x

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