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?

Alizarincrimson. The criteria for EDS diagnosis was changed last year. If you go on the EDS society’s website they list them . It tells you which of the criteria you need to have in order to be diagnosed
With each type of EDS. It might help you work out if you do have EDS 3

Forgot the link -
www.ehlers-danlos.org

When I more or less healthy my fatigue is manageable, although showers are still exhausting, and I need to rest the day after any extended activity.

Could you be anaemic? I thought the fatigue was stepping up for me recently but really it's that I'm low in iron and am starting to feel better after taking tablets to sort it.

I am hyper mobile and tired all the time. I get 9 hours sleep a night and am still exhausted. It never occurred to me it could be linked. I work full time and am a career for a disabled child so I put it down to that. Should I talk to my gp?

I have (severe) classical EDS. I use an electric wheelchair for any outside walking and am on morphine for the pain. I was born with dislocated hips and they dislocate several times a day. I have pretty bad POTS and am under cardio. The thing is, I'm much better than I used to be. What really helped is getting a physio who understood EDS and getting my POTS to be a bit better managed (for those who can't tolerate beta blockers, the new med to try is Ivabradine). Other than that, pacing and resting.

@TheOud - thanks, I'm not clear on whether I match all 3 criteria. 1, definitely. 3, yes. 2 is tricky - out of (c) I have two, but out of (a) I have only 2 (instead of 5). No one in my family has been diagnosed that I am aware of, but I have a very small genetic family and most of them are dead, so who knows. I might have EDS 3 or might not.

@GrouchyKiwi - I don't think I'm anaemic. I take a multi vit and eat a fair amount of green veggies and am a meat eater. Plus I take a multi-vitamin.

We often have bad digestion due to the EDS so it is a good idea to get checked for any deficiencies.

B vits and iron deficiencies are the worst for fatigue... Can be caused by our sluggish digestion. Xx

Previously The Oud here. When I was diagnosed the rheumatologist said the criteria needs to be matched precisely in order to meet it for diagnosis. If it hadn’t been precise then she said she would have diagnosed JHS but not EDS Joint Hypermobility. Not that I guess it makes much difference to the sufferer as the two sound so similar and I should imagine fatigue is also a feature if both.

I would agree blood tests to check for vitamin deficiencies would be useful if you’ve not had that already as EDS can affect absorption and also make the digestive system sluggish and problematic. My ferritin, vit D were both very low and both can cause tiredness,