*X* ~NEWBIES~ *X*
If you are newly or even oldly suffering from symptoms you suspect may be Chronic Fatigue, Fibromyalgia or any other unexplained possibly related neurological problem, such as M.E. (Myalgic Encephalomyelitis), or you have been told by your Doctor you have “CFS” / “It’s all in your head”, you will probably be feeling confused, exasperated and overwhelmed by this and the sheer volume of information and “treatments” available on-line and just about everywhere…
Don’t despair - yet! It takes time to sort the chaff from the wheat, and there is a lot of chaff out there which could prove detrimental to your health. Sadly, some of it is even prescribed or advised by the family GP, who is unlikely to be a Specialist in this area. Do your homework is the best advice I could ever offer…researching this illness is like peeling the layers off an onion, bound to give you the vapours from time to time…
Perhaps you are already diagnosed with M.E or FM is being mentioned (particularly now the new drug Lyrica* has appeared on the scene) etc, and are needing to center yourself and stick to the “theory” that makes the best sense to you. Here is an excellent starting point in your quest for understanding of the illness, what IT is and what IT is not. Please check out the following links before you get too caught up on the “CFS” merry-go-round…
Take your time to digest the information, there is a lot to take in. Most sufferers start by comparing the symptoms list. Remember that these types of illness are still relatively little understood, although certain Doctors and Researchers have made wonderful progress, while others continue to deny its very existence, throwing as many spanners in the works as possible! The whole subject is sadly medically political and you will find out why sooner or later. MEites still constantly face battles for social and medical acceptance - unbelievable isn’t it, that sick people have to fight so hard to be heard?
There is no exact cause known (but lots of speculation) because the illness is so multi-symptomatic and there is no cure to date. All is not lost, Multiple Sclerosis sufferers were in the same position just 25 years ago - now they have a cause and symptom relieving treatments, as well as receiving the basic human right of being taken seriously. Hang in there - our day will come. 
A Hummingbirds Guide to M.E. (Myalgic Encephalomyelitis) by Jodi Bassett. This site is probably the most comprehensive and best out there. A very good start to your “homework”!
http://www.ahummingbirdsguide.com/
The Nightingale Foundation - M.E. Research Centre of Dr. Byron Hyde.
The Committee for Justice & Recognition of M.E.
http://www.geocities.com/tcjrme/
The One Click Group - Latest news in Advocacy etc.
http://www.theoneclickgroup.co.uk/
Fibromyalgia Support & Forum
http://www.fibromyalgia-symptoms.org/
Foggy Friends - ME/CFS/FM etc. Friendship forum - Great people, good advice, some links & info.
I also recommend the Greg & Linda Crowhurst Video Diaries - link on Home Page under VIDEOS.
There are many more links, support groups and extensive info featured on this site, too much to list right here. Please peruse the site and I hope you find it to be of interest in your search for some sense!
I can be contacted at zarynity@yahoo.com or feel free to leave your comments here.
Thank you and take great care.
Blessings, Zarii
*Are drug giant Pfizer waxing Lyrica-l with their new Fibromyalgia drug Lyrica? We’ve all been told our imaginary illness is all in our minds - and now they have a pill for something that doesn’t exist, eh? Oh, come on…talk about adding insult to injury! Next, the GP’s will be shovelling it out like candy to all us waste of space Fibro fibbers! So don’t be too amazed when your ‘ol Doc starts telling you you were just imagining it was all in your mind…it is suddenly very real, just like his commission… Naughty M.E.
Here’s the link to the article in The New York Times:
http://www.nytimes.com/2008/01/14/health/14pain.html?_r=1&oref=slogin
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I’m trying desperately to review all this information. I don’t know if I have Myalgic ‘Encephalopathy but I know I am not a malingerer looking to live off disability benefits as one “doctor” suggested. I asked about a test for CFS because that was the only explanation I had read about that encompassed how I felt. Denied. I had acid reflux, found ulcer, fixed that. Prescribed Zoloft, etc., etc, Adderal because I was probably ADD, heart medication because of the Adderal. Doctor reluctantly scheduled an MRI. Arthritis, degenerative discs, bursitis..”.shouldn’t cause that much pain”. No pain medication. Sent to a psychiatrist, psychologist. Denied short term benefits because ” Diagnosis shouldn’t effect sedentary job” (which I had a a bank…stress factor not evaluated) Lost job. Lost insurance. Quit taking everything. Hate doctors.
I work retail now. Not enough hours. Not enough money. No benefits. I smile, say every thing’s gonna be OK. Love my “grown kids”. Love my grandkids. They think I’m eccentric (but I believe you have to have money to be that). Meanwhile, every muscle down to the bone hurts constantly, losing hair, I can’t focus, can’t sleep, head aches, concerted effort to get out of bed, major planning to get out of the house but don’t want to be a complainer. blah, blah, blah. Just thanks for being here. I’ll keep reading, accumulating knowledge. Maybe I am crazy but this felt like a good place to vent, so my head won’t blow up. OK that’s all.
Hi Miloui,
I hear you! I am so sorry you’re suffering in silence. You are NOT crazy! You are FRUSTRATED & quite rightly so. Welcome to the club. You are just at the end of the line like so many of us…feel free to vent here honey - that’s what it’s for…
Because there is still no singular test for this thing - that’s after you have been through the usual rounds of thyroid tests, diabetes, endocrine disorders, cardio etc. - (the best so far being a SPECT scan or MRI as they sometimes can pick up the lesions/abnormalities) it will not be taken seriously for the devastating illness that it is - until some drug empire decides that it’s a nice little earner that is - which is what has happened with Fibromyalgia (all of a sudden it is acknowledged because Pfizer can use Lyrica to treat some of the symptoms of FMS when they are not selling enough to the diabetics or depressed).
Unfortunately, most of the medical profession is still in the dark ages with their opinions on this illness ~ that’s why we get tagged as the malingerers, the neurotics and the hypochondriacs of the world & sent off to the funny farm…it’s right where MS was 25 years ago…no wonder many of us are now cynics and have little faith left in our family Doctors. We get left to rot & you wouldn’t put an animal through it…grrrr!
Who in their right mind wants to be this sick?!!! It mucks up ones entire life on every level for goodness sake! My humble (non-medical advice) is to be your own healer as far as you can be. Try and keep clear of the long term SSRI’s and heavy duty addictive pain controllers if you’re ever “lucky enough” to be offered them…
Yes, this site does carry a lot of info - take your time and take from it what sits right with you…I’ve tried to cover many things - conspiracy theories is my fav rave!
Thanks for visiting and I wish you many blessings. Zarii ~Admin.