If you have joint hypermobility syndrome, how bad is your fatigue?

[alizarincrimson]

I was diagnosed with JHMS (or whatever the new name for it is) a couple of years ago. I was also diagnosed with fibromyalgia at the same time, but I think my symptoms are fairly mild compared to most people's - I get flares when I'm tired, where all my muscles ache and twitch and I'm completely exhausted, but they are discrete episodes. I don't have generalised all-over pain all the time. I also get frequent aches and pains due to problems with specific joints. I have slipped discs and osteoarthritis in my spine, probably caused by the hypermobility. On top of that, I have some EDS-like problems with my circulation (it's terrible, my hands and feet are often blue).

But almost worse than the pain is the fatigue. I have not got much resilience, seem to need a lot of sleep and wear out quickly. I am currently not working, and have been getting enough sleep every night but am frequently exhausted by the evening. If I do half an hour of cardio at the gym, the next day is a write-off - I wake up exhausted and need a nap to get through the day. My rheumatologist puts it all down to the JHMS.

Just wondering whether other JHMS sufferers have such problems with fatigue, or whether it is more likely to be caused by something else?

I have hyper mobility syndrome, lots of pain sometimes and injure easy but exercise keeps my muscles strong which I believe helps. I don't get fatigued often and dont suffer with fibromyalgia though.

I’ve been told I have Hypermobility, I have issues with pain and also fatigue. However, I had some hefty doses of chemo a few years ago so the Hypermobility could be a red herring. I currently make it through the week to sleep through the weekend.

I have hypermobility syndrome and like gamer I don't suffer with fatigue. Going to the gym definitely helps me. I'd say it more to do with the fibromyalgia that you're struggling. I don't have that but have a coupe of friends who do that are easily exhausted after exercise.

I'm like gamer hick. I really suffer when I'm premenstrual, as my ligaments are softer, then and I'm going through hell, at the moment, as I'm perimenopausal and haven't had a period for almost 4 months and have random clusters of clumsy, painful days where everything feels like I'm doing it in a leaded suit.

I have this and get pain with specific joints. I also am prone to migraines which can wipe me out. I had bad fatigue a few years ago (burn out and untreated injuries) but since then my fatigue has been loads better.
I do get tired easier than my peers and sometimes have to sit down after I've cleaned the house or been shopping, and have had to ease up at the gym (half hour not an hour at a time) but otherwise live a fairly normal life. I haven't had fatigue for a few years now and although this can be part of hyper mobility syndrome I think this was down to badly managed and undiagnosed PoTs which a lot of people with hypermobility syndrome also have.

I have hyper mobility and don't suffer specific bouts of pain or exhaustion, but I have to work hard to ensure I keep myself mobile and exercising as the minute I stop I begin to feel the fatigue starting up.

DS1 has hyper mobility and like me takes care to ensure he does lots of different sports to keep himself moving. Every month or so he suffers a migraine where he then sleeps for 24 hours straight, like a computer rebooting, and wakes up absolutely fine. He also has ASD and nobody really knows if the brain reboot thing is because of the fatigue accumulating or because of the ASD or even something unrelated, but it's almost as though that's how his body copes with fatigue, by storing it all up til it reaches breaking point.

I have JHS too and the fatigue is pretty horrible. I had to go down to part time hours at work as I was just an exhausted wreck. I think a lot of the fatigue is linked to the pain, as even a supermarket shop/ 5 hour day at work/ hoovering etc has me feeling very achey, trembling/vibrating muscles and pain, which seems to wear me out. However, a lot of my symptoms also match fibromyalgia. I really don’t know which to blame for it

@bumblebee39 If you don’t mind me asking, is there any treatment that helps your PoTS? I have most but not all of the sysmotms and lots of palpitations, fast pulse and dizziness - and god yes the circulation problems. I’ve had blue fingers at work all week as the heating is rubbish! I could well believe PoTS is making my fatigue worse, but when I mentioned it to my gp they said all I could do was rest and pace myself (mind you they say that for any JHS related problem I ever have!)

Promethazine and PROCHLORPERAZINE I'm prescribed (dunno why but that will only come up in capitals) for dizziness. I also have to drink extra water and add salt/gravy/salty sauces to food to up my salt intake as low salt intake makes me worse. Trying to get put on slow release sodium tablets but because it's better managed they are saying "well, just keep doing what you are doing." Am prescribed an antidepressant to help me sleep and stop my restless legs (which has stopped it completely and stopped my lifetimes insomnia other than occasional flares due to stress). I prescribed diazepam for anxiety but use this more for when my muscles go into spasm if I'm honest (low dose and as needed, not a daily thing), Also prescribed codeine or dihydracodeine for my acute pain after an injury, and have some in the cupboard though rarely take them as I have not had an injury for a while thankgod!
This has taken 5 or so years to get on the right medication. They've tried me on amytryptaline, gabapentin, every painkiller under the sun and every antidepressant benzodiazepine and sleeper you've heard of and many you (and I) hadn't, but that's the regime that works for me.
I have heard other people need betablockers to manage PoTs but they make me worse. Also, I build muscle in my lower body and core but not my upper body as this is supposed to help regulate your blood pressure especially if your naturally Apple shaped like I am.
I walk every day, swim when I can, do plenty of squats and planks and love Pilates and the gym but rarely get there due to childcare issues.
I no longer do cardio at the gym other than 5 mins warm up and cool down when I do go, and concentrate on building lower body muscles (legs, bum etc.)
It's been a long process. I have had to stop using my hands so heavily and am careful when leaning down (or up) to get things that I don't get a subluxation (partial dislocation). I won't carry heavy things if I can possibly help it. I struggle most in the mornings but put my medication in a box ready to take and that's the first thing I do, leave it an hour to kick in and then function,
I used to have to sit down in the shower, get lifts or taxis everywhere (I don't drive) and often used the pram/buggy to lean on. I also had to accept I cannot baby wear as it screws my back up.
I also eat small regular meals and never eat a big meal as it makes me feel fatigued whereas eating half and nibbling later doesn't.
Everybody is different but that's what works for me to manage my PoTs, EDS and anxiety/depression. I know not everyone has all those things, but that's my regime and I have no idea what helps what, if the PoTs symptoms were what I thought was anxiety or if I have that to or if I was depressed because I was in pain or vice versa,
I just hope that this can help someone

I will add, I used to get really dizzy in the shower and had to have a seat in there in case I fell. That hasn't happened for a long while now and I believe that's due to my PoTs being better managed X

I have started going to the gym to try and help the fatigue/pain but it’s difficult to get the level right. I’ve also done Pilates on and off but should probably commit more time to it. PoTS wasn’t mentioned by the consultant but I wonder if it’s a possibility.

bumblebee39 that has helped me so much, thank you And it’s weird with PoTs/anxiety isn’t it - I have no idea if my heart is pounding because I’m anxious, or I’m felling anxious because my heart is pounding!

alizarincrimson I feel stuck in a weird middle ground where I know exercise (Pilates and swimming especially) help, but doing them leaves me in pain. I think I’ll just have to keep pushing through it though or else I’m only going to get worse. And honestly, if I didn’t have kids, I would sleep all weekend. Not because I want to, but because I’m shattered. Luckily I have a v understanding dh and kids are old enough to not actually need me that much!

Thank you for starting this thread, it’s nice (?reassuring?) to know that there are others going through this and it’s always good to hear how other people are coping. Have you done much about pacing and spoons?

For exercise, go for the plod.

I can plod for miles. I feel awful if I don't prioritise at least some walkies. I'm decorating a house and my first job of the day, on painting days, is a 30 min walk, or else I hurt all evening.

Re exercise fatigue has anyone looked at your arches? I have some joint hypermobility but not all the symptoms for a diagnosis I should say.

Pilates good for strengthening without overstretching if you're teacher is knowledgeable about hypermobility. I was using shoe orthotics etc but after learning how to switch on my arches in Pilates I dont need them any more and I also find low heel boots etc much better than flat.

I have just been diagnosed with POTS - literally 4 days ago!- but suspected a long while.

Saw private cardiologist who specializes in fainting and has an in interest in POTS who said I was textbook. He has told me to have 2 teaspoons of salt every morning (yum!) and wear class 2 support tights, fidget when sitting and when feeling well get a recumbent exercise bike. He also recommended meds if this didn't work but wanted to keep off the meds.

Well so far, I've only done the salt. It is beyond vile but honestly, I have never felt so well. My migraine has disappeared, I've stopped snacking relentlessly and I have so much more energy. And I'm not dizzy.

Best £350 I ever spent.

Ooh yes the salt thing.
Two things I do are a) stir a tsp of salt into a glass of fruit squash which makes it more palatable b) but isotonic drinks or make my own.
I also keep a packet of salty crisps or nuts on hand.
Exercise can make it worse to start with but be gentle and it should improve things. I used to literally do 20 mins of Pilates or 10 lengths in the pool at the beginning, and go for 5-10 minute walks whereas now I can be on my feet for an hour or more.
I did PT voluntary work and went from needing regular breaks to not needing breaks and can now managed Normal hours. Equally I used to take a lot of breaks at Uni and sometimes come home early whereas now I can manage a whole day so long as I fidget and have a walk or stretching session in the uni gym between lectures.

Tbh the hypermobility diagnosis helped a lot less than PoTS. And treating PoTS is easier although it does mean being Willing to change your lifestyle and diet.

I make adjustments and try to pace myself, but I live a fairly normal life. I lost my PIP and ESA, I have managed to manage so much more than I ever thought possible. I could have stayed sick and sat there and felt sorry for myself but by actively participating in occupational therapy and physio therapy and pain management appointments and all the rest (and refusing to let my GP call me a hypochondriac for the thousandth time and demanding referrals etc.) I have learned to be in control of my life and not let it be in control of me

there were times I felt like it was impossible and I would not ever feel better but thankfully I was wrong.

My advise to anyone would be, keep on pushing through. The next workout the next life challenge the next diagnosis the next new medication. Do not quit until you have some quality of life back, but also accept that taking a break is not the same as giving up.

I have what used to be called benign JHS, which is now termed JHS (joint hypermobility syndrome) - but is now considered to be interchangeable with EDS Type 3.

"Hypermobile EDS, previously known as EDS type III, is a form of the condition many experts now consider to be the same thing as joint hypermobility syndrome (JHS). This is the most common type of EDS and is estimated to affect around one in every 100 to 200 people."

I personally don't think that's helpful, as the Brighton criteria have a mix of musculoskeletal and systemic symptoms

I have joint laxity, subluxations, stiff muscles, clicky joints, poor coordination - enough to tick enough boxes on the Brighton criteria

But I don't have systemic issues like fatigue, POTS, gastro issues, resistance to local anaesthetic etc

So I wouldn't describe myself as having EDS - I do have joint hypermobility syndrome, but I think benign JHS made a helpful distinction.

Hypermobility is non-generalised joint laxity that doesn't cause ongoing pain or related problems

Hypermobility syndrome is joint laxity plus symptoms

I think benign JHS helped to distinguish hypermobility syndrome with purely musculoskeletal symptoms from more complex systemic issues. I don't feel it's accurate to describe my hypermobility as EDS but the terminology keeps changing!

YY to proper arch support

My custom orthotics have made a huge difference to my ankles

Go over on them far less often and the pain is significantly reduced

The bio mechanics guy i saw said I had the most hypermobile ankles he'd seen in about 4 years 

Thank you so much for all the advice, everyone.
@tabbycat, I do have fallen arches but I don't have orthotics.

@Daphne, my physiotherapist mentioned pacing/spoons but I haven't really acted on it. It seemed to be for people who are more badly affected than I am. I am actually quite fit and can, for example, do 5k in 30 minutes on the rowing machine at the gym, but the next day I am in pain and exhausted, have to sleep a lot and can't do anything, which I don't think is normal for someone in their early 30s who is otherwise healthy.

@PickAChew, I've found that too - I have to warm up really well before exercising otherwise I wreck myself.

@bumblebee, it's inspiring that you've managed to improve your symptoms so much.

I don't know whether I do in fact have fibromyalgia, even though I've been diagnosed with it. My symptoms don't seem as bad as a lot of people's. But doctors just put everything down to HMS/fibromyalgia and seem to assume that everyone suffers the same and just say 'well, what do you expect?' and 'there isn't a cure'. So it is very helpful to hear from people who have the same thing and have found ways to manage it.

I have looked up PoTS and I don't know if it fits. I don't really get dizzy spells. My heart does start up and odd times - not exactly palpitations but sometimes the beats come very hard. My circulation is crap though - as above.

Even though I am relatively lucky to have it mildly, I just find it very frustrating having to worry about not "overdoing it". I don't have children but we want them. I worry how I will physically cope with it.

I have EDS type 3. Only diagnosed last year at National Orthopaedic Hospital age 57. It was such a relief to have a reason for the exhaustion I’ve had since childhood as well as all the sprains, tendinitis, joint and muscle pain, bruises, easily damaged skin etc. The only exercise I can do is walking. Gym, Pilates etc I end up spraining or tearing some ligament or other.

I need masses of sleep 10 hours + and can do things in bursts of activity and then am shattered. I’m lucky that I can pace myself now and don’t work so don’t need to get up early any more which was awful.

I now accept I don’t have the stamina of normal folk and though I’m very frustrated about it, realise it’s a fact and has to be managed sensibly. It’s definitely that worst aspect for me too though

Can I ask you knonwledgable people if you can say what this sounds like, if anything?

when young v bendy, fainted a lot (several times a day), low iron
gained weight over a 10 yr period after severe Symphysis pubis disorder over a 6-7 year period (2xpg, in wheelchair at wk 18 for 1st and never really recovered). I've been on crutches for 10 years. Gained weight . all blamed on that. have now lost most of it but no reduction in symptoms which are:

Severe pain in hip sockets. General pain in ALL joints much worse in cold or damp weather. 2x slipped discs. trapped nerves in legs (surgery to reduce effects of) low iron, fainty, severe fatigue. pain wakes me several times a night. cannot sit on office type chair without severe pain in tailbone. very clicky joints. Pain also much worse around ovulation and menstruation. Paralysing fatigue. I've lost 7.5st and had no reduction in joint pain :(

Do i need to ask for a referral? and who to pls?

I was diagnosed at 18, so that’s 30 years ago. I have JHS - lax joints, frequent subluxations, often pain, I’m clumsy too and frequently covered in bruises. Especially before a period. Also got POTS and am resistant to anaesthetic. So many things made sense once I got my diagnosis. I have to avoid any activities with impact - running, aerobics etc are all absolutely out of the question as my ankles, knees and hips are unstable. What helped me most was weight training as keeping my muscles strong has meant less pressure on my joints. It has been life transforming and really improved my mobility.

Just wanted to add: the fatigue used to absolutely wipe me out - these days it catches up from time to time but is generally not so much of a problem. I am sure being physically stronger plays a role here.

Hi OP I have joint hypermobility and get pain and exhaustion frequently. I haven't yet managed to find the right balance of exercise which helps but doesn't totally wreck me. I sleep for about 10-12 hours a night and still feel exhausted (though I feel much worse if I don't get those 10-12 hours). I'm currently off work due to the pain which has at least partially helped with the exhaustion

@ARoomSomewhere - that definitely sounds like Ehler's Danlos Syndrome. Ask your GP to refer you to a rheumatologist.

I have wondered whether I am actually more on the EDS side of things that JHS. My skin isn't particularly soft or stretchy, but I do have "spider fingers" plus the circulation problems. Perhaps that would explain the fatigue? I don't remember the consultant mentioning EDS3 but I know a lot of them consider it to be the same as JHS, so maybe he did too.

@bumblebee39 That's a really positive read! I know that I've become very deconditioned, and my most recent lightbulb moment was that I need to find a balance of cardiovascular exercise (for my heart), weight bearing (to ward off osteoporosis) but most of all strengthening all of my weak spots/poor stability joints. And people like you remind me that it is doable and I need to pull my finger out!