Any EDS sufferers here ?

[MrDarcysMa]

Just that really. I have HEDS which is far from the worst type and usually I get along ok. But I've had a terrible weekend with it and spent the day in bed (throbbing joints, fatigue, dizziness). It's hard to describe to friends and family as it's quite 'unknown' and they just don't understand.

I have had periods of being very physically active and strong (yes it was difficult but I pushed through and learned what to avoid and what was doable for me and overalll I felt better for it) but since lockdown started I've not attended my gym and been very sedentary which I thought would help. It seems not and I was better off when I was rushing around with gym and work and socialising, as since I've slowed down, one long walk can cripple me for a weekend.

I think I just needed to vent as I'm feeling miserable. Wondering if anyone else had had similar experiences and of exercise is good or bad ?

Hi!

Yes, me! And yes since lockdown it's been a lot worse. I've been finding it hard to get into an exercise routine. Had an awful weekend pain wise and now very sore this evening and feeling a bit sorry for myself.

My GP is advising me to try and get out for a short walk every day - helped at the time today but now very sore. It does help in the long run though. Also yoga. For years I was advised against it as we are already extra bendy. But most recent GP suggested it and I do think it helps.

How are you feeling today?

Hi Dunraven. Thanks for your reply. Knees are still incredibly sore today which is common but it was the fatigue & dizziness that really threw me at the weekend. I felt like my blood pressure was really low and I spent the day in and out of sleep/ consciousness.

Today I went to the supermarket and took car to the garage to Hoover it so I can be fairly active usually despite the pain. Don't know what happened yesterday.

May I ask your history with it and how/ when you were diagnosed ?

I've only been officially diagnosed for a year (after 20 years of mis diagnosis) so I'm still putting 2 and 2 together with symptoms which I previously brushed off!

@DunravenBadger Sorry I didn't ask how you are too! Just waffled about myself. I hope you're doing ok today? Maybe it was the every changing weather at the weekend, that's quite a common trigger.

Hello! Yes, both my daughter and I have EDS. Sorry you’ve had a crappy weekend and a flare up. Take your time getting over it, trying to speed recovery up NEVER helps!

Hi @TheGonnagle, nice to have you here.
Does anyone know why EDS flares up? If it's a connective tissue disorder then I don't understand how it can be ok for a few months then excruciating for the next few ?
I need to start keeping a proper diary......

For me there are multiple triggers but stress, my period being due and damp cold weather are the big three.

The winter is always shit. All joints are sore and fall out a lot and old injuries flare up to have another go. Particularly my right hip, which I injured almost five years ago slipping on ice. It’s still totally ruined. And my shoulder, which I managed a full dislocation and Labrador tear on whilst taking off my best

*vest. Not best.

@TheGonnagle definitely agree with the period thing. Mine is due around now.
How long have you and dd been diagnosed ?
She's very lucky to have it named so early. I was told I had 'growing pains' my whole childhood

Morning. I had joint pain for years and years. As a child my parents took me to the GP, paediatrician etc who just said it was growing pains and I'd grow out of it. Well guess what, I didn't grow out of it! Over the years GP just kept trying to say I'd sprained my ankle (that was my biggest pain point at that time), or had trapped a nerve in my back. Finally in my mid twenties I got diagnosed by a consultant physiotherapist who checked me via the Beighton score (i think it's called).

I do think cold weather makes my pain a lot worse. I find I tense up in the cold which makes everything feel worse. It's weird though isn't it, being really active and then bam, flare up and things hurt intensely. I find that sometimes it can make people not take me seriously when I do have a flare up that for example in the Summer I was climbing Ben Nevis but now everything hurts and normal day to day tasks are a struggle. So frustrating to have such a big change.

Interesting people say about their periods. Do you think it's hormone related and if so does hormonal birth control affect your pain levels too?

I, like you, had multiple consultants appointments as a child. Growing pains, hypochondria, pulled muscle, trapped nerve. All sorts of bollocks. No one really knew, and the highlight was being made too stand and bend in my knickers in front of a group of med. students when I was 14. That sucked.
Then, when I had IVF to have dd, I was under the genetics team at Birmingham Women’s as my husband is a carrier for cystic fibrosis. At the close meeting some wonderful person flagged my notes and called me in. I was diagnosed that day, scoring a spectacular 9 on the Beighton scale. Mum was diagnosed the following week in the same clinic as they asked to see her. Dd was diagnosed practically at birth after some excellent consultant led care throughout my pregnancy. She has a care plan at school, people who know her condition and understand her needs. Never going to be told that she’s clumsy, or to stop making a fuss. I’m both glad that she has an advocate and gutted that I gave it her....

hmm interesting, similar story here. I think a big part of my problem is that I've moved around a lot and never had one consistent GP for more than a few years until now!
School age - lots of knee pain, 'growing pains'
Early 20s - GP told me may be rheumatism
Mid 20s - Paid for private physio for the first time, he told me it was just due to flat feel, I believed him.
Mid 20s - See GP about my jaw which kept dislocating he googled it in front of me then told me it was nothing to worry about and have me some physio exercises to do.
Late 20s - moved areas, had a different male physio who massaged my bum a lot which felt weird so I stopped going.
Early 30s - repeated trips to GP, brushed off mainly. One said it was possibly MH related as I said it was making me miserable.
Mid 30s - New GP, ended up crying at her about the pain, have bursitis in both elbows at this point and can not hold a pen, blood tests showed high rheumatism factors and referred to rheumatologist
Rheumatologist does Beighton test and writes strong letter to GP stating 'this lady quite clearly has EDS' I think luckily this time I saw specialists at the right time in a 'flare up' which helped them take it seriously.

Weirdly I work in a medium size business with 2 other EDS sufferers. one classic and one HEDS, both have much more severe symptoms than me and are only able to work part time (I've even taken one to hospital before!) so I was very surprised when I got the diagnosis as my day to day life is nowhere near as badly affected as theirs. But I am wondering since this lockdown if I'm declining like them, and it's too late to get active again.

@TheGonnagle That is understandable to feel that way but presumably she'll have a much easier ride of it than all of us did, without the 30 years of ignorant GPs and misdiagnoses!

Bursitis. How much does THAT hurt for something so easily dismissed by the doctors? I have bursitis in both bursas of my left hip, they feel like they’re on fire! Have you found anything that works for it? I’m not allowed NSAIDS because I also have chronic kidney disease but any other suggestions most gratefully received.

Not me, but both of my daughters have EDS .. (aged 26 and 28) almost certainly from dh.
Both have multiple dislocations, gut issues, one has heart involvement, both have POTS.
Both have flares... and periods when they are relatively pain free. DD2 is currently pregnant and the already lax joints are pretty much jelly now.. dislocated her shoulder rolling over in bed! On the plus side her general pain levels are better..which is good as she is on multiple meds and has to stop some at 24 weeks which is next week!

Both girls were 20 before they were diagnosed despite multiple dislocations, extreme hypermobility , scarring etc as kids. I really hope that DD2's baby does not have EDS but if it shows any signs we will push for diagnosis early!

@StillMedusa best wishes for your granddaughters baby. Apparently EDS is genetic but you can also have it without it being passed on from a parent.

Does any kind of pain relief help anyone?
One currently got calexocib which don't seem to do much. Also taking vit d and cod liver oil daily. I'm really bad at sticking so supplements long term.

It's understandable how you feel @MrDarcysMa I don't think it's too late to get active though. It takes a while but gently pushing through the pain can help. My GP recommended getting out for a short walk of 10 mins once or twice a day and building it up. Even if you start with walking to the end of the street and back the first day and then gradually going a bit further. Personally gentle yoga also helps me. I know in some circles it's not recommended for HEDS but in others it is - there is a theory that since our joints hyper extend, they need that extra push for strengthening and to be used to a further range than a non hyper mobile person. But then other physios highly recommend against it so up to you but after years of avoiding it, I'm finding now Yoga does help.

Pain meds for me I was on pregabalin for years which partially helped. I'm actually tapering off it now though due to wanting to ttc next year. Cocodamol also helps but only very temporarily.

I've actually got another thread running which may help you with pain relief. I'll see if I can link it now:

www.mumsnet.com/Talk/am_i_being_unreasonable/4106437-To-ask-how-you-manage-your-chronic-pain