New to BTC

[ciennagma]

Hello my name is Heidi, 47. I am new to this site. I have seen it several times as I do search on the internet.

I have FMS/CFID. I was just diagnosed with Alpha intrustions and sleep apnea. I have a CPAP and started Xyrem. The CPAP seems to high, but the xyrem seems to help.

My Nuero Dr said it is Dysregulation spectrum Syndrom. It covers IBS, TMJ FMS, CFID, Headaches and more. Has anyone heard of this.

He feels like if I fix my sleep I will be all better. :) I am thinking after 3 years that would be too good to be true!

I also get a rash on my face, it is not raised, it is just hot and bright red like a sunburn. Does anyone else have this? Is it part of FMS? It goes away in a in 2-8 hours.

I would appreciatee any comments or suggestions,

Thanks

[Nanna B]

Hi Heidi,

Welcome, I am new to all this too, I was just dx in Nov 2006. I am still learning. I have never heard of Alpha intrustions? but I would like to learn more.

I don't sleep through the night, but I started dreaming again in December and I will tell you I feel soooo much better. It really helps with the fatigue!

I have two rashes on my face: 1-the dermatologist said is Roscea (which I disagree with, totallly) my nose is real red (Rudolph Red) and my cheeks are a little red as well. 2-I have another on my neck, one dr. was concerned with, others ignore it. Don't know what that is? That one is starting to turn dark like pigment.?? strange.

I hope you feel better,

Take Care,

nan

[Tootsie]

Fibromyalgia is almost always secondary to some other condition. Often times, once that other condition is under control, or treated, the fibromyalgia will subside.

Sleep disorders are characterisitic of fibromyalgia. If the CPAP machine helps, then your sleep problems will subside and no doubt the fibro symptoms will ease. I think the term "alpha intrusions," probably refers to the type of brain wave pattern found during your sleep study.

Rashes can be a side effect of medication. Check with your pharmacist and see if it documented to be associated with the medication prescribed.

Nan, why do you feel that the dermatologist misdiagnosed the roscea? Did he prescribe any kind of medication? Cheerio.

[Nanna B]

Hi Tootsie,

It's funny after I thought about it, I really don't know why I disagree with the dr on the roscea. He diagnosed me about 4 years ago when I had eczema. I asked him about my nose and cheeks and without looking closer he just said-that's roscea.

He did prescribe a cream that I could only take for 3 mos at a time.

After the 1st 3mos I didn't notice any change. So I opted not to go back and have it rechecked. I just left it.

So now 4 yrs later, I started taking vitamins with this new dr and for a very brief time my nose and cheeks cleared up, beautifully. I was so happy! But now I am sorry to say I have the redness back. Drats.

I know there are two types of roscea: one like a severe acne and the other a very mild break out. I have the very mild kind.


Thanks,
nan

[BrokenBladder]

Hello Heidi,

Well FMS isn't an easy one to give an explanation for or even to figure out symptoms. There are so many different things that can be a symptom of FMS that the lists are quite extensive. I started a thread on here a few months back asking for peoples symtoms, you should have no trouble finding it and you will be surprised at how long the list gets.
As Tootsie said FMS is usually secondary to something else. In my case the original problem can't be repaired or gotten any more under control than it already is, which isn't good enough.
As far as sleep goes, I've tried everything and still my sleep pattern is horrible at best. I wish I could sleep, but I just can't, at least not for long.
Take Care and let us know how you're doing.

[Tootsie]

One thing I found, was that you really have to make sleep a priority. I knew that I had to get up and go to work, so tried to make sure that I went to bed early enough so that if I awakened in the night, and couldn't go back to sleep right away, I still had time, to do so.

On those occasions when I had disrupted sleep at night, I got up went to work, and took a nap when I got home. By doing that, I made up for the deficit, but yet was still able to sleep that night. Research has found that sometimes a day time nap, will improve the quality of the sleep at night.

I also found that I simply cannot have any kind of activity, evenings. In order to fall asleep, I have to read or do some kind of handwork during those hours before bedtime.

All the information about "sleep hygiene," is very appropriate and helpful. However, in spite of those recommendation about arising and going to bed at the same time, for those of us with fibro, I think that you have to give in to the urge to sleep, when it is offered. Go take that nap, go to bed at 5 PM, if that's when you are tired and sleepy. Work out the details when your fibro is feeling less overwhelming. Cheerio.