By Tyra on Thursday, February 01, 2001 - 02:37 pm:

Hello
I am 21-years old and I suspect that I have EDS (My sister has EDS and I have excatly the same symptoms as her)
I went to a doctor two days ago and talked about EDS, I brought up the problem that I am always tired and that after working hard it takes me days to recover my ordinary strengh. My doctor told me that that this has nothing to do with EDS. Is it really so? Am I the only one with EDS who also suffers from chronic fatigue? It would also be great if I could hear from anyone about how being diagnosed with EDS has affected their lifes.

By Ann on Thursday, February 01, 2001 - 02:47 pm:

I have EDS hypermobile type and have suffered from chronic fatigue for years. My doctors have always "pooh poohed" the link with EDS, but my physiotherapists have said "Of course fatigue is part of having muscles that work so hard!"

By El on Friday, February 02, 2001 - 01:00 pm:

I have EDS also but all of my Dr's are aware of my fatigue. They are the ones that made me aware that my sleeping habits are not normal. I would get so litature and print it out and take it to him.

By heather on Friday, February 02, 2001 - 02:34 pm:

i'm always tired. i need loads of sleep which i never seem to get-my daughter sees to that and at the end of the day sometimes feel like i can't move. my daughters physio, who i saw as a child says the reason is that because of being hypermobile your muscles have to work twice as hard to support you and they are weaker to start with. not much hope then really! i find that doing as much as i can, when i can but not pushing myself when i can't is the only way i manage, plus i sleep in on saturdays!

By Jane on Sunday, February 04, 2001 - 10:26 am:

Yup, there are all kinds of links between chronic fatigue and HMS/EDS -- in fact, EDS is sometimes misdiagnosed as chronic fatigue, and vice versa. It's definitely true that we have to work harder just to hold our bodies together, and that makes us tired. Any chronic illness will wear you down, particularly one in which you are consistently in pain -- your body needs more sleep to recover.

In fact, there's some evidence that connective tissue disorders may be linked to sleep disorders (look up Fibromyalgia online). If you are unable to reach the deepest cycles of sleep -- the restorative cycles -- your body won't repair itself, and you'll be in more pain, and will be more tired, as a result.

The advice I've been given is to exercise during the day so that I'm tired enough to sleep at night, and to try and sleep on a regular cycle, so that my body has an intuitive sense of when it's time to zonk out and when it's time to wake up. I'm definitely tired a lot of the time, but I also have trouble sleeping -- I wake up so much that in order to get a healthy 8 hours of sleep I have to be in bed for 10 hours at least. I've also noticed that I have a lot more joint pain when I don't sleep enough/don't sleep deeply/don't sleep on a regular cycle. Has anyone else noticed this?

By Lucy on Tuesday, February 06, 2001 - 09:00 am:

Hi there fellow hypermobiles!

I too have EDS type III. It is perfectly natural to feel more fatigue than "normal" people. The muscles are working overtime to try and keep everything together and this expends more energy. If I do too much on one day I can expect to be bedridden the next - my body is exhausted. Keep up the mental stimulous though and try to change activities frequently so that while your body may be suffering, your mind is not focusing on it too much. I recently started painting which really helped to relax me. Another phenomenon of this disorder is that during sleep, it is hard for us to find a comfortable position and so our bodies are always tossing and turning, this adds to fatigue and waking up not feeling rested. I too have terrible pain when I don't get enough sleep, this is because sleep is essential to cell regeneration. It does help to take something before going to bed - I take either Valium or Flexeril and a hot mug of Ovaltine. Remember that while going through treatments, meds are only temporary and can be helpful. Gentle hugs to all - Lucy

By Michelle Riddy on Monday, July 01, 2002 - 02:31 pm:

Its so Great to read this!!

I'm always physically exhausted and as I'm only 21 am always bing called lazy etc. I have been dxd a few months ago with HEDS so everything is now starting to fall into place big time. Its just so great to see another thing I've always had and realise that I'm not alone & I'm not the only one.

I am always so worn out I find it hard to sleep and I always feel so run down - probably b/coz of not sleeping properly. Thank you all for making me realise I'm not wierd or on my own.
Love to you all
Michelle