By Beth on Friday, June 02, 2000 - 02:10 pm:

I don't sleep. Not because of joint pain(at least pain that I am aware of),dislocations,meds or anything I can pin point. I just don't sleep.

Anyone else out there with that problem? I go to sleep when i am tired(unless I get tired before 9pm or am at work). I work second shift due to child care issues. I
have worked other shifts and it just didn't seem to matter all that much. I get by on short naps, no matter what time of day it is.

By Marjolein on Friday, June 02, 2000 - 02:11 pm:

Hello I also have problems with sleeping. I sleep about 5 hours a night (from 2:00 till 7:00 or something like that) and am always tired. Sometimes I sleep less or
not, and in the weekends I sleep a bit more. I do not drink coffe (only on sat or sunday) and tried a lot, but nothing has worked till now. Does anybody know if there
is a connection between this and EDS etc.?

By Gwen on Friday, June 02, 2000 - 02:12 pm:

Beth, you say you get by on short naps during the day. Are you truly sleep deprived or just have an alternative sleeping pattern? I understand sleep deprivation as
getting insufficient sleep to allow one to perform daily activities. I have had a broken sleep pattern for many years now and fluctuate between periods of simply not
getting enough sleep and periods where I'm still sleeping, at best, 4 hours during the night and having a mid afternoon nap to compensate. You say meds aren't a
problem. Hhave you asked your doctor? I have been on Prozac for a number of years, taking it at night until I read that it can cause agitation and restless legs so
have now switched to taking it a.m. which seems to have helped but maybe it is part of my fluctuation. What is your caffeine intake? Try switching to herbal teas or
the like after midday and see if that makes a difference. I recently read that eating a banana in the evening helps, as does a drink of warm milk. There is a good
internet site, I think it is www.sleep.com but am not too sure of address. You may be able to get some ideas from there. Gwen

By Beth on Friday, June 02, 2000 - 02:12 pm:

Most days I am still tired. ussually about 2 hours after my naps. I am taking Celebrex,Clariten(sp), BC, Vitamins,Zantac, and skelaxin(that is a muscle relaxer). I
have looked most of them up and sleeplessness doesn't seem to be a side affect.

By Sue C on Friday, June 02, 2000 - 02:12 pm:

Talk to a knowledgeable Pharmacist about drug interaction.

By Eppie on Friday, June 02, 2000 - 02:13 pm:

Supposedly this is a very common problem with HMS people (did you read that 1999 journal article from Physical Therapy?...it mentions this specifically.
Something do do with anxiety...yeah, no duh). Anyway, I've had trouble sleeping since this crazy hypermobility started (also a new mom, which definately plays a
part). I've found that melatonin helps, and when it gets really bad I take a prescribed anti-anxiety pill (try to avoid these, as they are habit forming). But, in all reality
your body does almost of its healing during Stage 4 sleep, so I figure I'll do what it takes to get there. Email me if you have anymore questions. Oh yeah, relaxing
music, hot baths before bed, and a supportive hubby also help. Sweet dreams.

By Natalja on Friday, June 02, 2000 - 02:13 pm:

At times I've got the same problem, but don't forget, your muscels work a lot harder then most peoples do. ( yours try to keep your skeleton in order and preform
like other people) So probably you're tired in the daytime, but restless at night. Maybe you could try not to take anymore naps, relax, but beware not to fall a sleep,
so your body gets some rest but not that much to make you stay awake at night-time.
Sometimes going to a cinema or whatever you like could help you relax at night and give your mind some relaxation too.

By Jonathan B on Friday, June 02, 2000 - 02:13 pm:

I would just like to say I stopped drinking coffee about 2 weeks ago and am sleeping better(started drinking herbal tea instead)
Jonathan B

By Michaela on Wednesday, June 28, 2000 - 03:38 am:

And I thought it was just my brother being noisy;)
No, I do not sleep well at all, never get a refreshing sleep. But I do have some amazingly vivid dreams, in colour and first person.
Over active imagination or whatever. Sleep is not restful.
Sleeping in a sound proof very dark room is all that helps me.
Oh and a shot of Drambuie in a hot chocolate;)

By Bianca on Thursday, June 29, 2000 - 03:10 am:

I have sometimes also very vivid dreams, too. Above all I dream then about hiking in beautiful landscapes and skiing in beautyful snowy mountains. But I think that is a way my mind tries to cope with, that I can' t do any of these things any more.
When I awake I never know whether I should be happy about the beautiful dream or be sad because I feel then very hard what I have lost.

By Lin on Wednesday, November 01, 2000 - 07:29 pm:

Michaela, you sound like me, because of school, i sleep about 5 hours a night, and it is much less than 5 hours. count the 30 min to fall asleep... when i am about to fall asleep sometimes my leg muscles will like spaz, and kick and i wake up, that gets annoying.. the waking up every so often to turn over, or move in some way, or just waking up, and the fact that i always seem to wake up 30 min before i have to and lay there not awake but not able to fall back asleep. the time i spend sleeping is NOT restful at all. I will try to take a nap in the afternoon after school and i fall right to sleep. i am not realy tired, i am always tired in a sense, but always able to pay good attention and function well, but it still wears me down. on weekends i sleep 12-14 hours sometimes, because i continue to wake up and not be able to fall back asleep, i have tried changing mattresses, i dont drink much caffeine, i dont know what it is.... when i do sleep, my dreams are aslo very vivid, and very real, and i am concious during them, i have control over my actions in my dreams, and ever since i was little if i have a nightmare, i can make myself wake up somehow... i might also mention i have ADHD, and am not on any medication for it..

By Patrina on Sunday, November 05, 2000 - 08:32 pm:

Most of my life I've had sleep problems, couldn't get to sleep, restless legs, either waking often or sleeping so deeply that I didn't turn over and then I'd have a colossal headache when I woke up.

Also for me there's a correlation between the amount of good deep sleep I get, and pain the next day. I also have fibromyalgia, and between that and hypermobility-caused arthritis . . . Yikes!

I often have the extra-vivid dreams, and sometimes am conscious enough to control them. I know that the vivid stuff can be caused by some meds, like antidepressants, but I don't know of any relation to anything else.

Except that, when I'm vivid-dreaming, it's so damn difficult to get up (like to go to work), because I want to know 'how the story ends' and keep hitting the snooze bar on my alarm clock. All that without really waking up. Weird.

Backing-off on the caffeine helps me, as does small doses of activity throughout the day. I'm also on antidepressants, and klonopin for antianxiety. It took a while to work out which things to take at what times of day to get good sleep and still be able to get up when I should.

By Lin on Monday, November 06, 2000 - 07:37 pm:

lol, i do the same thing, if i like the dream, i hit the snooze button, a few times i have actualy been able to get back into the dream, but never again, so i never get to see the end. =( i am not on medication, except ibuprofin 3 times daily, and albuterol. i just have always been this way, w/o sleep... gotten used to it i guess...

By Aryl'Di on Thursday, February 22, 2001 - 05:14 pm:

I too have suffered from insomnia for a very long time. I have suffered from what I am told is Tenosynovitis / tendonitis in my wrists, ankles and knees since forever.

I have had problems since primary school, and it was only when I reached 15 and could not even pick up a cup of tea or a pen (terrifying, even without the thought of my GCSEs coming up) that my Mom took me to my doctor and demanded that he help me that he diagnosed Tenosynovitis and gave me some Difflam (yeah, hopeless, have any of you been fobbed off like that?)

By the time I was 19, I was in so much pain that I contemplated suicide. I rarely got a decent night's sleep, and could barely function. I did not even know what it was like to be normal. It didn't help that joint pain had such a stigma with RSI hitting the news (how many times / ways can you explain that 10 year olds can't have RSI, and neither can teenagers who have never typed; not all joint pain is RSI).

About a year ago, I met a friend who had suffered from HMS for years and was about to retire because of it, and discovered that my symptoms dramatically parallelled hers. I can bend my thumb down to my wrist (Had the "specialist" I saw at 15 done something more than tell me, "oh, you shouldn't be able to do that...here, have a splint", perhaps my limbs would not be in such a state today), my thumb rotates in its' socket, my ankles have always rotated as I move, as do my knees.

And now I find that not only do I have the symptoms of HMS, which I believe is responsible for my tendonitis (finally, a reason for my agony!), but other people have also experienced the sleeplessness that I thought I was unique in suffering.

Yes, I am on Diclofenac, and one of the side effects is insomnia, but I have been an insomniac for years before I started taking the pills, and I cannot function without them.

Every so often it hits me that I will never be normal, and the thought terrifys me. It is reassuring to know that there are others going through the same agony. I have felt alone in my condition for so long, consigned to the same shelf as malingerers and skivers. I have lost 2 jobs because of my condition and am now forced to hide it (ridiculously hard, considering that I regularly experience jolts of pain as one of my joints shifts awkwardly).

ok, so I have kinda wandered off the subject. To return to the topic: My last ditch cure when I become fractured with lack of sleep is either a glass of red wine, or 2 shots of Baileys. It's a real treat, as within half an hour of drinking I am fast asleep, and I stay that way for the full 8 hours. I wouldn't recommend doing that every night, but if you really need to sleep, then red wine / Baileys are (at present) unfailing aids to sleep.

good luck, and I hope that you all find sleep,

regards,

Aryl'Di

By Gwen on Friday, February 23, 2001 - 10:49 am:

I like the idea of a glass of red wine as a sedative. Current medical opinion is that moderate use of alcohol is beneficial and a glass a night would probably come into that category. Certainly it doesn't make you into an old lush! Alcohol is a muscle relaxant so probably gets to those nasty knotty areas and trigger spots.
Lack of sleep is a real problem. The guys who carry out interrogations knew what they were doing when they tortured people with sleep deprivation One of the quickest ways of making their victims crack. If you have chronic insomnia your metabolism is upset, judgement impaired and your immune system doesn't function as well as it should, not to mention many other adverse effects.
I try to get by without resorting to painkillers but don't believe in being a martyr. If I hurt sufficiently I'll swallow a couple of Digesic (no longer available so I'm ekeing out my little supply) I find paracetamol has no effect and am wary of using aspirin based drugs as I also have irritable bowel. Generally I've gotten most relief from opioids and fortunatly don't seem to have developed a dependence.
Generally I use a combination of heat, rest and stretching until the pain recedes or decides to migrate to another part of my body. This Ok as long as I have the leisure to do it and am not at work or in a public setting.
Nightimes are far worse than days. I suspect this is because at night my muscles are relaxed and no longer supporting the ligaments in keeping my joints in place. Even though I sandbag myself into place with pillows I can never support everywhere sufficiently and when I wake my morning chorus is not one of birdsong but the click, creak, crack of joints realigning themselves. Like a salvo of pop guns.

By natalie on Friday, January 25, 2002 - 09:18 am:

I too have HMS and have trouble sleeping never thought it was related though,docs dont tell me much.Sounds like the strange dreams must be cos i have those where you can control what happens too.

By corkie on Thursday, April 29, 2004 - 09:22 am:

My daughter is six and all she wants to do is sleep she takes 3-4 hour naps after school. She gets behind on her home work because we run out of time after school.
corkie