By Gail Norris on Monday, March 04, 2002 - 08:29 am:

Hi there, I am a 33 year old female from U.K and I have been diagnosed with HMS, but I seem to be getting very different symptoms than usual. My G.P seems to think that it sounds like fibromyalgia or chronic fatigue syndrome, does anyone else have both of these disorders?

By Sheena on Monday, March 04, 2002 - 10:01 am:

Hi Gail
Apparently HMS people are also likely to have fibromyalgia and CFS. As you search on the internet you pick up lots of interesting information! If my GP wanted to treat me for fibromyalgia and/or CFS I would let him, because I might get some relief from these symptoms, and there is not much in the way of treatment for HMS. (Actually that depends which country you live in - if you are in the US you might want to read up about prolotherapy.) Physiotherapy helps some people but not others. There are aids which you can find out about either from a physiotherapist who understands HMS, or from web-sites like

http://www.hypermobility.org/
and
http://www.hypermobility.org/links.shtml

In my own case, I had to find out what was causing the worst of my aches and pains (which unfortunately was my job, sitting at a PC all day!), and then STOP DOING IT. Rest helped - I was unemployed for over a year. I now have a different type of job. Hopefully you will not have to do the same!

Best of luck
Sheena

By Ian on Monday, March 04, 2002 - 10:06 am:

Gail, when you have hyper mobile joints your muscles have to work so much harder to retain control and the loose joints often do not make it easy to get restful sleep. Fatigue can occur because of this.

By Margareth on Monday, March 04, 2002 - 05:11 pm:

fibro- means concerning the connective tissue
-my- means concerning the muscles
-algia means pain

So fibromyalgia is Greek for painful ligaments and muscles. Nothing more nothing less. Fibromyalgia can be primary, that is when you just have fibromyalgia. It can also be secondary that means the fibromyalgia is caused by an other disease. People with HMS or EDS, as you will understand, very often have painful muscles and ligaments so they are often diagnosed with fibromyalgia.
This is OK, as long as the doctor keeps in mind the fibromyalgia is secondary, that the pain is caused by HMS/EDS and that the treatment should be accordingly.

I ache at most of the so called 'tenderpoints' which are used to diagnose fybromyalgia. I also ache at a lot of other points in my body. The only one who ever mentioned the word fibromyalgia to me was a rheumatologist who didn't have the slightest idea what hypermobility can do to the human body. All the other doctors I've seen after my diagnosis with HMS have concentrated on the hypermobility.

What goes for fibromyalgia also goes for chronic fatigue syndrome. People are diagnosed with chronic fatigue syndrome when they feel tired all the time (in most cases for no obvious reason). When you have HMS or EDS your muscles have to do a lot of extra work to make up for the loose ligaments, like Ian says above. It is not hard to see how that can make you very tired. I don't think it is right to diagnose people who have HMS/EDS with chronic fatigue syndrome. Like with the fibromyalgia the diagnosis of chronic fatigue syndrome (or fibromyalgia) apart from the diagnosis of HMS/EDS takes the focus away from the cause of all problems which is the HMS/EDS. Treatments for chronic fatigue syndrome and fibromyalgia can be very different from what a hypermobile body needs.

Take care,
Margareth

By Iggie on Thursday, March 07, 2002 - 11:07 am:

The other really annoying aspect of a diagnosis of CFS or Fybromyalgia is the scepticism with which they are treated by the medical, and sometimes psychological, professions. I say this as someone with HMS/EDS who has worked in a physical rehab. unit where some patients had CFS/Fybromyalgia, but also as a trainee psychologist who finds it hard to agree with many of the psychological theories of these illnesses!!

Iggie

By Ian on Thursday, March 07, 2002 - 01:01 pm:

Yes, there is a very big problem with "professionals" who do not want to understand problems associated with HMS, EDS and similar.

Not only in the medical field but those who teach at schools need more education. A child at school has a teacher and most of them regard all kids as being the same so participation in all activities has the teacher forcing all kids to do the same activities. The child with HMS should not be doing impact sports or gym yet they are forced to do this and this starts the often "impossible to cure" situation.

Some folks when they qualify in their chosen profession consider they know it all; will not listen, and have the style of "don't confuse me with facts; my mind is made up" and this is a disaster. When dealing with "professionals" if you are a parent make sure you are heard; if you are a sufferer insist that your comments are taken on board.

By David Rolph on Sunday, March 10, 2002 - 06:35 am:

Hi Gail

refence your chronic fatigue this is something i have noticed in myself and i have been a suffer of HMS for six years now. It now leaves me extrememly tired and in a lot of pain and the sense that someone is sitting on you from a great height and physically being pinned to your bed.

By julie Bullock on Thursday, June 19, 2003 - 08:26 am:

Hi my name is Julie i have HMS but at the moment i am suffering from extreme tiredness. I am awaiting another rheumatology appointment but i am feeling very low because of this tiredness. All i seem to think of is sleep I am only 30 and have two children but I am sruggling to stay awake any suggestions anybody.

By hamfist on Friday, June 20, 2003 - 03:26 am:

Julie
If you have hyper mobile joints the muscles surrounding the joints have to work that much harder to try to stop joints from uncontrolled dislocation so you will get tired more easy.
As well, I note that at 30 you have had 2 children and wonder if you possibly have put on extra weight. This would make the problem worse.
Muscle toning exercises and remaining relatively slim would likely help you.
Best regards, Ian

By Julie Bullock on Friday, June 20, 2003 - 06:18 am:

hi thanks for your reply. I have but on a little weight but am only about half a stone over my ideal weight. It is only in the past six months that i have felt so tired. I am a quite active person and keep fit as best i can I do taekwondo and use an exercise bike also. I work 20 hours a week. Another question does any wear any sort of joint supports whilst asleep because i often seem to wake up feeling twisted and uncomfortable. Is it ok i wonder to wear such things whilst sleeping any ideas. Excuse my lack of question marks but my keyboard wont allow me to use any!
Hope to hear from someone soon. regards
Julie.

By friendly lurker aka Deb on Friday, June 20, 2003 - 07:26 pm:

Hi Julie.

I'm also 33. I was very active until my mid-20s, when I became too tired and too frequently injured to keep up with athletics. I can't bear living without sports, so I'm in physical therapy and hoping for the best.

I have chronic fatigue (the symptom, not the syndrome). It's been explained to me as it has been here: your muscles work overtime to keep your joints together, which causes fatigue. For the same reason, sleep isn't as restorative as it should be.

For example, I did a sleep study a couple of years ago and found out that I come up out of sleep, almost to waking, 8 - 22 times an hour. "No wonder you're so tired," the sleep doc said later.

I also have an underactive thyroid, which complicates things. Hypothyroidism also causes fatigue.

For about a year, I've been taking a medication called modafinil. It's been in use for narcolepsy for some years, but my sleep doctor has had good results prescribing it for chronic fatigue. It's not a traditional stimulant like caffeine or amphetamine, and it's not addictive. It doesn't make me feel wired. It just helps me do more in an average day and, consequently, sleep a bit better at night. You might want to look into it.

I don't know about wearing braces to bed. It would be difficult to brace my hips and shoulders. Maybe others here have ideas?

What I recommend most is NOT being satisfied with a diagnosis of Chronic Fatigue Syndrome and/or fibromyalgia; keep looking for the source of your pain and fatigue. I was diagnosed with CFS, but 1. having a name for it was irrelevant and 2. my immune system is fine.

I'm not suggesting that CFS and fibromylagia aren't real. I'm saying for me, time and persistence showed that neither was the source of my troubles. Knowing that my fatigue and aches are caused by my thyroid and my joints lets me focus on treating those problems.

Good luck!

By julie Bullock on Saturday, June 21, 2003 - 05:13 pm:

Thankyou very much for your reply. It is so nice to know that i am not alone. I think that what you say about sleep is so true. Also i seem to dream a lot which i believe only happens in the very light stages of sleep! i frequently can recall as many as 10 dreams the following morning and sometimes i feel that i am being drained because my mind never seems to be settled or peaceful even at night. The most upsetting thing of all is that i feel very misunderstood by family and freinds and seem to be classed as being lazy because of my desire to sleep.
I have tried to stay awake even when i am my most exhausted but this makes me irrritable and gives me headaches! i just want to feel alive.
I am only able to write at this hour because i slept in this morning and slept another 4 hours this afternoon i feel i am sleeping my life away.
Sometimes i wish that the doctors would find some cause for my sleepyness because i feel that i am imagining it all!
I feel that all my family think im a hypochondriac and that i always seem to have some sort of medical support on my knee/wrist/ankle anyway i must quit with all this moaning as i am constantly told there are people a lot worse of than me!
i think that if i got a little more understanding maybe it would help me physically maybe lack of empathy makes these problems worse.
Im still moaning are'nt i thanks for listening
regards
Julie