Hi, New here!

[Nez]

Hi,

Yes I do, this seems to be the main problem i have.

When I sleep it just seems very irratic and I mostly wake up feeling just as (if not more) tired than when I went to sleep.

Its very draining.

I was given Amitriptaline when I first found that I had it. It helped in alot of ways but i dont want to go down that road again, I didn't like taking it. Although it helped in some ways it made me feel worse in others. I found it very addictive when I tried to come off them and it made me feel like a zombie most of the time.

How do u deal with your sleeping issue?

[Ineedsleepnow]

I started Provigil about a month ago, as getting up and the zombiness was at it's worst. I have been on various drug combinations over the years for what was thought to be insomnia. I still take Ambien, but it still takes up to 3 hrs before I can even begin to feel sleepy; and, I still constantly wake up. My sleep doc wants me to try Xyrem for off label use. Oh, I also have obstructive sleep apena. I use a cpap, but wonder if it really helps anything. I often wonder how something as simple as sleep be so difficult. Have you seen any news on using Xyrem for any other reason than Narcolepsy in the UK?

Happy Monday.

[Nez]

Hi,

i'm new here,

I am male 25 years old, I live in the UK and was diagnosed as having Fibro a few years by a specailist at my local hospital after a very hard and long time. My doctor still won't admit that I have this condition and there for its not on my health record.

The symptoms seemed to go away after about a year or and I was fine, but now I feel as its comming back.

Its hard being a male with this condition because people always say "its that what women get?" and people just dont understand how I feel.

Anyway I was just looking to say hello and meet u all, I'm hope theres maybe some other guys here who I could talk to.

I do look forward to meet all who post here.

chers,

Neil

[Ineedsleepnow]

Hi, Nez. I am fairly new as well. I was just wondering if you experience alpha intrusion with your fibro condition? I have severe alpha intrusion, but I do not have fibo.

Welcome!

[Angell1653]

Hello Nez, my b/f has fibro and i am sure he could use a friend to chat with also I am learning more about his condition. Its very diffcult to understand sometimes but im trying. I my self have Narcolepsy and sleep apnea which i think he may suffer from also. we are going to make a app soon for him to be checked. if you would like to email me please do so at Angelbaby339@hotmail.com Angel

[Droopy in NC]

Hi Ya’ll!

I have a question.

If you haven’t yet been diagnosed with Fibro and are pretty sure that you’ve got it, is there really any point in spending the time or the money to go to the Specialist to get an “Official” Fibro dx?

I have already been diagnosed with Narcolepsy (in 1997) and Depression and have been turned down twice since then for life insurance. No explanation given as to WHY. I am hoping to again try to obtain life (and disability) insurance in the near future. Could the Fibro dx make it even harder? Have you had any experience with this?

Thanks for any comments you can provide.

Droopy in NC

[Nez]

hi all,

Sorry i haven't posted back I've been so busy.

Thank you all for your relpies

Hey Droopy,

I personaly think it is worth getting diagnosed as there are so many other things it could be, plus then you will know for sure that, that is what you have and you can start on the path to controlling it instead of it controlling you. You will also get support from yor GPs and so on (unless you have the same Doctor as me!) but don't let that put you off!

[Droopy in NC]

Nez,

I had my follow-up today with my sleep doc (for N) and asked him about the Fibro. Told him all my symptoms and what I've already been dx'd with and he didn't feel there was really any point to getting an official dx. He said it wouldn't change any of my meds or anything anyway.

So I think, for now, I'll leave it at that. Thanks for your response.

Droopy

[Gman4500]

Hello everyone, I to am new here. To answer a question from someone, I think Droopy. A Fibromyalgia dx does put you at risk of not being able to get dissability ins. They wouldent touch me with a ten foot pole. I am considered a high risk. About three monthes ago I was diagnosed with sleep apnea and now narcolepsy. It is all very hard to cope with as I will soon be losing my job. I have a comercial drivers lisence. By federal law the doctor is required to notify DOT right away. He did this by fax while I was Still in his office. They took my lisence and basically my lively hood. So please dont feel down it could be worse. I wish you all the best. I love this site.