Fibro and sleep disorder

[Conway]

It's my understanding that most fibromyalgia patients have a sleep disorder that is treated with Xyrem.

If you can have a sleep study and you have this disorder, you could eliminate many of your meds and feel much better taking only Xyrem.

[Tired Lady]

I take medications and also utilize massage for treatment of fibromyalgia. How do I tolerate it? I have a great massage therapist who works with my chiropracter.

I also take my medicine about 30 minutes before my appointment. If the pain gets to be too much during the massage, Billy, my therapist, backs off and uses less pressure.
I can't get my husband to massage me because he has too much strength in his hands and it kills me.

The pain can get intense at times, but if the therapist is willing to listen to you and treat you accordingly it is worth the time, money, and effort.

I am hurting tonight on both sides of my body but more so on the right side. I have those exquisitely tender knots in the muscles of my shoulders, arms, ribs, collarbone, and leg (particularly along the blade bone of my shoulder and the place where my shoulder attaches to my arm alongside the back of my arm).

I am taking flexeril (10 mg.), Ultram (50 mg.), prozac (20 mg), BuSpar (10 mg.) also
fiorcet as needed for the blinding headaches due to neck and shoulder tension (I don't take much of this as it is habit-forming). One prescription of 20 tablets last me 3 or 4 months so you know I am not taking it very often.


I also have sleep apnea and psoriasis. I finally went to the dermatologist and got the psoriasis under control. I am getting a new RemStar C-Flex autopap machine with a heated humidifier to enhance compliance next Monday. I hope it will help me get a handle on the sleep deprivation and grogginess from the allergies and fibro.

[Ella]

I have been a nurse for over 19 years and worked in several specialty areas.I was diagnoised with F/m 2 years ago.I also have restless leg syndrom x 15 years and hypersomnia. I started out on sleeping pills pain pills klonazapam.for the last 5 mounths I continue with an anti depressent/moodstabalizer and neurotin 1800 mg nightly.this has helped me more than anything. I overdosed 5 mounths ago on pain pills and sleeping pills due to sleep walking and taking pills in my sleep I also cook in my sleep scary but true.any way I can say the neurotin has been a miricle drug for me it helps the pain and puts me to sleep. neurotin is non narcotic or addicting and is used for cronic pain and nuropathy in diabetics. thanks

[Tired Lady]

I have had fibromyalgia for almost 15 years. I take 10 mg. flexeril, 50 mg. Ultram, and 10 mg. BuSpar at night. I can take more Ultram during the day if needed.

I also have obstructive sleep apnea and am on Cpap therapy.

I have found that a combination of these medications and massage and chriopractic adjustments work best for me.

As others here have said there is no treatment that will work for everyone. You have to keep trying different options until you find something that works for you.

[lawztinsleep]

Thought that this might be helpful for some since new treatment info is often hard to find.

[url]http://www.getprolo.com/sleep_in_chronic_pain.htm

http://prolotherapy.org/article.asp?prolotherapy=318[/url][/url]

[suzieq637]

I have had fm for at least 20 years, if not more. I was finally diagnosed in 1988. I recently went to a new rheumotologist and she referred me to a neuro who is a sleep specialist. After a full sleep study I was diagnosed with alpha intrusion sleep disorder and also no waves in the third and fourth stages of sleep. There is no apnea or other problem. With this diagnosis the neuro suggested xyrem. I would like to here from other FM patients who might have this same sleep disorder and have tried xyrem. I currently take 2 atavan, 1 benedryl for sleep which helps some. I also take celebrex for pain, provigil for fatigue, lyrica for pain, skelaxin for muscle relaxation (neck) and cymbalta. I am concerned about adding the xyrem to the above list.

I never, ever, wake up feeling rested or refreshed. I am hoping that xyrem will be the answer. I also have arthritis, lumbar spinal stenosis.

Please reply with any feedback.

[sleepymoon]

i'm on xyrem now...for narcolepsy, but my recent sleep study showed a lot of fragmented sleep. doc readily prescribed xyrem. i have been diagnosed recently w/fibro, but i also have ankylosing spondylitis, also painful.

on xyrem, i sleep great, it wakes me up, no more fog...fewer naps. i love it. a few nights i was stressed out plus PMSing...even xyrem couldn't keep me under as much as i'd like. noises still wake me up, so i don't feel scared about sleeping through emergencies. all the side effects i've experienced so far have been positive. hair growing faster, more energy, less stiff when i wake up, weird thing was my teeth started moving, but after a month they stopped. i'm 25 years old and feel like i'm finally finishing puberty. lol. i finally have hope i may be able to return to work.

eh but i'm supposed to rest my arms and not type, but wanted u to know the xyrem has been great to me.

[suzieq637]

Thanks so much for your reply. It gives me hope that this might work. How long until xyrem really took effect? Any other xyrem users out there? Any responses will help me feel less afraid to use this drug.

Thanks!

[sleepymoon]

http://www.advocatesforsleep.com/

check out this link and call them at 1-800-823-8893
...you can talk directly to xyrem patients who have fibro. Orphan (makers of Xyrem) actually sent me this number with my first order.

[suzieq637]

Hi!

Thanks for the info. I also received this information and called. I spoke with a great guy who has been takng xyrem for sixteen years (from Canada). It completely ended his bouts with narcolepsy and cataplexy after the first doses.

I just took my first 2 doses last night and slept quite well. I am still taking all of my other sleep medication. I hope I can give them up as soon as possible.

Have you started taking the xyrem and what have been your responses?

[Guest]

[suzieq637]

started on 2 grams 2x pernight, increasing to 4 grams in 3 weeks.

First night was great, really felt that I slept better and woke up less fatigued.

Second night I took only one atavan instead of two thinking I should try to take less. That was not a good idea, as I was up almost all night even with the xyrem. I will follow the dr.'s orders and not eliminate any other meds yet.

[Guest]

[suzieq637]

I am definitely getting more solid sleep. I still wake up feeling like i have been run over by a truck. It is very difficult to wake up. I am attributing this to all the other meds I am taking. Atavan and Lyrica can be very sedating, and cause hangover.

For now I will just continue this way until my Dr. app't.

Thanks for your interest.

[DJL]

I have sleep apnea (I am using CPAP) and have FM due to bad sleep for so many years.
It seems tha Xyrem can be used for FM and sleep problems, does it have any really bad side affect once you have sorted out the correct dose. Also is there withdraw symtoms like you get from sleep medication such as Ambien etc.

Thanks Dave