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If you have hypermobility / Ehlers Danlos, do you have flares?

(13 Posts)
BestWatcherInTheUnit Sun 15-Nov-20 19:08:18

I have been diagnosed with hypermobility spectrum disorder (used to be called joint hypermobility syndrome). Every so often I will have a proper "flare up" where I am exhausted, stiff, brain-fogged and need to take painkillers/do lots of physio exercises in order to function. It will go on for weeks sometimes and then one day it will suddenly lift. By this point I will have lost all my previous level of strength/fitness, and am then left with having to build myself back up from ground zero.

In between flares, once I have built myself back up I feel pretty well, and can do near-normal levels of exercise without a problem. I wish I could find some way of avoiding the flares/crashes as they are really debilitating and turn me into a near-invalid.

Does this sound familiar to anyone with hypermobility?

OP’s posts: |
AlanThePig Sun 15-Nov-20 19:55:46

Yes absolutely. Especially if I've been active or if the weather is cold and damp.

I often find I'll go months with a joint playing up (elbow, hip, knee) only for it to vanish again and not come back for a long time.
I do occasionally crash where I'm utterly exhausted for no reason and it takes me a while to get back to being me again.

Lilac95 Sun 15-Nov-20 20:16:56

This is me to a tee. I’ve gone months being able to manage with the usual aches but in the last month I’m in endless pain with my knees hips and shoulder. It’s always weather for me that triggers a change or being very busy and run down. I go through phases of wanting to be in bed by 9pm but give it a few weeks and I’m up all hours. I find it’s totally unpredictable but I did find I had a particularly bad bout of tonsillitis in Feb, I didn’t feel back to normal until September at least.

CupboardMonster Sun 15-Nov-20 20:21:32

Yes, very much so. The weather makes a huge difference and so do hormone fluctuations. I can feel fit and strong sometimes and other times an exhausted swollen clicky jointed wobbly baby giraffe.

AlanThePig Sun 15-Nov-20 20:21:50

I find ring splints massively help my fingers (shameless plug for a lady called Zomile on FB who makes beautiful silver ones to order). Thats where my problems mostly lie at present with the pain waking me in the early hours. I sleep in compression gloves which also help.

I also have stomach flares which I'm told are related to it as well. My old GP questioned why I was being prescribed painkillers for "being a bit bendy". I've since changed Doctors.

BestWatcherInTheUnit Sun 15-Nov-20 22:05:50

Thanks for the responses. I've managed up to now with no prescriptions, but I'm wondering whether the time has come for some kind of painkiller or sleep aid (or both, something like amitriptyline). When I have a flare, I go to bed in pain and wake up in pain. I suppose I am also in pain while asleep and therefore don't sleep very well. At the moment I'm relying on cocodamol - breaking the rule of only using it for three days (I don't take it every day thought and am not addicted).

My main problem area is my neck and upper spine - I've slipped three discs, and also have disc degeneration, osteoarthritis, bone spurs and mild scoliosis.

Do any of you take painkillers every day?

OP’s posts: |
Copperblack Sun 15-Nov-20 22:09:31

My daughter finds her periods cause terrible flares of joint pain. Going on the pill continuously really helped. I think Oct/nov is tough for lots of people with EDS and POTs.

WeirdlyOdd Sun 15-Nov-20 22:21:03

Yes, to painkillers every day.

Paracetamol as a basic painkiller. Daily amitriptyline for nerve pain and to help me sleep.

I layer in codeine on top for flare ups and GP prescribes it so I can take it longer than 3 days. I also have much higher dose codeine than available OTC prescribed.

I use NSAIDs for flare ups, and many people use them all them all the time as their first line pain relief, although I have problems with the side effects. Ibuprofen is an obvious NSAID, but it's not good to use long-term due to the risk of stomach bleeding. Your GP can prescribe you something different.

WeirdlyOdd Sun 15-Nov-20 22:30:56

You could also look at pacing your 'good' times. It can be really tempting to overdo things when you are feeling better, and that can cause the flare up. It might be better to go more steadily in between flare ups and see if that reduces the flare ups.

You say you do near 'normal' exercise when feeling good. What does this entail?

AlanThePig Sun 15-Nov-20 23:01:13

I had to stop amytriptilyne a it turned me into a zombie. Currently on daily 30/500 codeine and ibuprofen.
New GP is much more understanding and wants to try and get on top of things but obviously this isn't the time yet.

My biggest issue is as my dh calls it "bull in a China shop syndrome". Ie everything needs to be done now, by me and with no pacing. I moved some very heavy planters on Thursday and have been in agony with my hip since. Of course of I'd waited an hour dh could have helped, but that's not me.

As I'm getting older I find extreme stiffness comes into it and sitting to standing and vice versa can be tricky. Also sitting after walking for any length of time can be agony. I have scoliosis too, which I believe is all linked in with the condition. Only a slight bend but enough that I feel it.

It's depressingly shit actually. Im not even 50 and my late mum who was 80 could have run rings around me.

MrDarcysMa Sun 15-Nov-20 23:21:42

Yes, usually around this time of year in particular when it turns cold and damp.

Hazelnutlatteplease Sun 15-Nov-20 23:22:57

Yy to anything hormonal being a trigger. Also vitamin D deficiency is another known trigger. DD is meant to take hmmhmm something ridiculous like double or triple the usual supplement dosage.

Epsom salt baths are fantastic for pain. Sometimes you can get them cheap at Poundland (unless we've just been in and cleared the shelves), otherwise try your local paydens pharmacy or B&m.

Do try proper sleep/relaxation music. It can work but you might take some time getting the right one for you. Amazon are great for it, sonicaid works for me but DD needs something with more random sounds.

Have you been checked out for vitamin/metabolic deficiencies generally? Specifically b12. Might well be worth a chat to your GP. Also Try drinking/switching to full fat stuff during a brain fuzz periods although this one's a long shot. Fats are an important part of the process of information transmission through the nervous system.

StillMedusa Sun 15-Nov-20 23:48:32

Both of my (adult..in their twenties) daughters have EDS. Both have periods of almost remission.. few dislocations and less pain, and then randomly really bad patches where the exhaustion is overwhelming , the pain awful and usually terrible dislocations.
Exercise really helps them both..when well. Bad patches mean as much sleep as possible and pacing (one's a doctor, the other is a nurse so not easy jobs!) They are both on many meds and painkillers.

DD2 is currently 18 weeks pregnant and the hormones are not helping.. her dh dislocated her shoulder last night helping her sit up!

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