Hi all,

I know I'm quiet at the mo, I'm RSDed out at the moment.

However, a friend emailed me these as suggestions and it's really helpful... I find that I have to lie flat in bed because of my neck/ spine (and amazing ability to be spastic and fall out of bed when my spasms kick in).

I tried this resting position and found that it did help me.. so thought I'd share

http://www.trevwilliams.co.uk/metips/home.html

(she sends me lots of tips from Severe ME websites - because in many ways (NOT ALL!!) it is sort of like RSD (severe pain and fatigue and nobody having a clue what is going on). Well, at least in my case.

Love Fed up Frogga xxxxxxxxx

PS - also have (at home) a heated waterbed! so nice to get back to it (jealous anyone? mum does whinge about heating bills though cos constantly have it on about 30 degrees).....

hope you are feeling better soon.
I love my waterbed too!

but when frank was going to have the trial scs put in, i asked the doc about the waterbed.......he said NO>>...don't use it.......(now we know why the catheter frank had in kept coming out) so frank is on the pull out recliner of our couch.....................

you mentioned that your mum hates the cost of the waterbed heat, but you set it at 30 degrees???? holy moley, that would be soo cold......i have ours set on 90...i hope that you have different temp settings in the uk.....lafff

sorry that you are not doing well this past week..hope things improve for you soon..................

Hey Claudia,
Yes, just the difference between fahrenheit and centigrade, I think - the US is the only country that still uses fahrenheit, the rest of the world has been metric for years. So 30C = 86F.

Thanks, Frogga, there are some really useful suggestions in that link (and, oh! so that's what CFS really is! Horrid.
all the best

Hi,

Yes, we are in the stone age here not using metric. But I did find a good article on CFS, it talks about ME as well. I have not been DX with CFS but I certainly feel weak at times.
Hugs, Roz


http://www.oxymega.com/chronic_fatigue_syndrome.html

Recently published studies by at The Inst. for Molecular Medicine in Huntington Beach, CA. demonstrated a possible connection between mycoplasma infection and chronic fatigue. Systemic mycoplasma infection can cause chronic fatigue, muscle pain and a variety of additional signs and symptoms, some of which are related to dysfunctional immune responses and in extreme cases autoimmune-like disorders. Some mycoplasmas can invade virtually every human tissue and compromise the immune system, permitting opportunistic infections by other bacteria, viruses, fungi, and yeast. When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response

Hey

LOL Em G

I always forget about conversions...... !!!

In winter I have it set as warm as possible!! Also... use fleece blankets to sleep on and then have a silk duvet and lots more fleece blankets on top! (only time I'm warm is in bed!)

I do feel that some of the ME tips are useful for dealing with this... especially equipment wise.

Hope it helped some people
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

PS How many of us have waterbeds? They are the best... I miss mine so much at uni (though admittedly at uni I have an amazing electric bed that does turns and all this other stuff I never knew I needed.. but it's a (sort of) tempur mattress (which is too hard for me) so I have to do the "princess and the pea" trick of sleeping on thick duvets on top of mattress (really, I suppose, removing the pressure relief of the mattress, but hey..)