ME Flare ups and sleep problems

[earwakerlaura]

Hi everyone,

I'm currently undiagnosed with CFS as I haven't had symptoms for 3/4 months yet.I've had symptoms for about 10 weeks.

This past week I've been even more drained and felt very queasy.

The past couple of nights I couldn't sleep properly as I felt so nauseous.

Last night I took a 25mg Nytol and found drifting off very easy,I didn't feel queasy at all.I woke a few times during the night but fell back to sleep very quickly as I never felt fully awake.

However waking today after 12 hours, I felt a bit groggy but my nausea was quite strong and I still feel drained,although not as bad as with no sleep.

I've taken a few Wind-eze as I don't have many anti-sickness tablets left.

Tonight I might try half of the tablet or 1/4 instead.I'm not sure if my nausea is caused by the nytol as I've had it before taking it,or my lack of energy.

Has anyone had experience of sleeping problems/taking Nytol or flare ups where you feel even more drained than normal?

Please help!

[Hidden]

Haven't taken the nytol but do have flare ups. If I don't pace myself carefully I would be more exhausted.

My GP suspected M.E. pointing me in the direction of the Canadian Consensus Document:

richmondandkingstonmegroup....

Anyway it was only after seeing a specialist - Dr William Weir who diagnosed me that the GP fully accepted it.

Dr Weir advised that I:

Avoid Gluten and Dairy

PACE:

actionforme.org.uk/uploads/...

Take Omega 3 oils

Meditate

Take Vit D supplements

Hope you get your answers soon.

Take care.

[Ebbysmum in reply to Hidden]

Hi, can I ask how you got to see Dr Weir, NHS or private? And what part of the country is he in? Thanks

[Hidden in reply to Ebbysmum]

I heard about him via Occupational Health then googled him.

I had to go private and I met him in a hotel in Belfast; although based in Harley St London, he would fly into Belfast to see Irish sufferers.

Price wise he was very reasonable as these things go and definitely appeared very interested, knowledgeable and understanding.

[Ebbysmum in reply to Hidden]

Thank you

[Hidden in reply to Ebbysmum]

No thanks needed, I take cash

Take care.

[jpoonwoo]

I have never used nytol so I'm not sure about it. The cfs specialist I've seen recommended phenegren to me. You can start with 10mg if you think you might be sensitive to meds. It's available over the counter. Or regular strength is 25mg which I found pretty good when I just felt likeioni I desperately needed s good, full nights sleep. Didn't mean I woke up feeling refreshed but it's better than when you feel you haven't slept. Phenegren is also an antinausea med that's used for motion sickness and other things so hopefully it helps you with that too. I did find that it work best the first couple weeks and then wasn't as effective. I think for me i need to rotate what I use for sleep

[Ebbysmum]

Hi, my first advice is to say please don't rush into getting diagnosed with this, ME/CFS is not something I'd wish anyone to have. PLEASE make sure you get tested for everything else under the sun, including sleep apnea and restless leg syndrome, also lupus, thyroid and so on. So many other conditions all share the same symptoms, and are usually treatable. ME/CFS has no test, it is diagnosed by exclusion when every other test is normal. You may be getting some of these already.

My advice re your current night time problems would be to keep a full diary of symptoms and feelings, how much you slept etc. Personally I'd stop the nytol and windeeze and see how things are without any of them for a few days, then if you must, try one or the other. Remember only change one thing or one dose at a time, stick with it for a few days and keep a strict diary of how you are.

Take this to your medical practitioner at your next appointment, also note how you are at work (if working) your day to day activities, emotional stress as well as physical stress.

Being diagnosed takes a while, it can try your patience, but I really hope they find out what is wrong with you and get you treated. I got treated for depression, menopause, had my gall bladder out, and only then did the drs take me seriously enough when I said I was still "swimming through treacle" (that was how I described how I felt in the day!) I then got a referral to a rheumatologist who tested me for everything under the sun. All was normal, so ME/CFS by exclusion was the outcome.

I wish you well, but please don't label yourself with this until you absolutely have to.

[earwakerlaura]

Thank you for your advice everyone you've been great!I only realised this morning that my voice was croaking and I felt a bit phlemy and weak/achy like you do when you're coming down with a cold.

Thought back to when I first felt worse (worse than my usual unwell state) which was Monday.The day before I had visited my nieces,who all have colds!

I've never been more relieved to find out I have a cold as I know it'll take me a little longer to feel better but I will feel better soon.

Any tips for dealing with fatigue and a cold lol?

Believe me I couldn't rush a diagnosis of CFS if I tried. I have to see a Gastro Consultant in May for an examination and tests before I'll be referred to the Liverpool CFS/ME clinic.They review you on a committee and if it's not obvious that you have CFS then you're sent for more tests.Plus you need a whole list of blood tests before they'll consider your referral

[carer999]

Once you have a CFS/ME diagnosis when you go back to your doctor for another issue you will be told well what can you expect you have CFS/ME. e.g a virus will take longer to get over not that it might be bacterial and you may need antibiotics. Every problem has to be left longer in case it is just a CFS/ME issue

[Ebbysmum in reply to carer999]

I agree, the severe degenerative osteoarthritis in my left hip was passed of as just ME/Fibromyalgia pains, until I had several falls, and then I got looked at on my insistence and I discovered I needed a hip replacement!! Anyway I have had to go private because of NHS restrictions, but I'm so much better for having a whole new hip!! But if I hadn't insisted I would not be in such a good place now!