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Chronic Fatigue Syndrome
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Posted 8/11/2005 7:56 PM (GMT 0)
Hello, I stumbled across this site and wondered if anyone can help/advise me. From reading some of the posts I guess this will sound so familier but somehow I need to express what I am feeling. 10 years ago I had a triple bypass op and at that moment my life changed. If its a nightmare then its a waking one because I can put my hand on my heart and say I have not had a decent sleep since. 2/3 hours of unrefreshed sleep is my norm, often 2 days without. My head feels like cotton wool most of the time and my concentration span is nil. I used to enjoy a good film or work for hours on my computer. My tolernce to virtually any form of medicine stopped with severe reactions , mostly gut and head based, especially to any anti-depressants which a string of doctors seemed keen to prescribe stating that I was depressed as a result of not being able to come to terms with the trauma of my op. My arms ,especially the shoulder to elbow ache like hell most of the time, my head aches and feels woolly, my eyes have difficulty focussing ( I close one eye all the time even after having my precrip checked so often, my glands in my neck and throat are almost always swollen, I have developed a reaction to most types of food resulting in a diagnosis of IBS, (after colonoscopy x2 I was told to change my diet, but to what as i seem intolerant to most?) I sweat like a pig most of the time, my stress is through the roof and at last the biggie which has led me here, cyclic fatigue which lays me low for days and nothing seems to shift it until its run its course 3/4 days later. this seems to come and go to be fair sometimes nor as bad for weeks and then bang its back with avengence. After 10 years of frustration and rejection at the hands of Doctors who,s atitude is if you wont take the pills then how do you expect to feel I finally am told I can have antidepressants injected and load this info into a search engine to check it out and through some fateful quirk come across a web sight that lists all my symptoms as grade A cfs!!! I dont know whether I feel elated or depressed about this but can anyone relate to this. This is important as I have a review with a mental health worker next tues and dont know what to do, do I point out all this and say how come no-one has sujjested cfs. By the way my doctor apparantly does not belive it exists. The only other thing I have is coeliac disease for 15 years but this is under control with a well established gluten free diet.
Please can someone help advise me how to proceed before I go crazy
Posted 8/12/2005 7:07 PM (GMT 0)
hi dane first of all i want tosend you warm hugs . you are in my thoughts. now to me it does sound like cfs, maybe brought on by your operation.. cfs can be caused by accidents, trauma , etc. if your doctor doesnt believe in cfs, then by all means find one that does. you can still keep the other one for other illnesses. the aching in the arms , does sound like a condition called fibromyalgia a muscle disease, that can also cause ibs. i myself have all your symptoms , i was diagnosed l3 years. ago with cfs and fibro. and yes my fatigue is cyclical. which really makes people think we are hypochondrial. how old are you. drs. are always pushing antidepressants for cfs. because truthfully they do help a lot of people, they help to give the fatigue a boost. but i am like you i cannot take the drugs anymore, cant even take vitamins without getting terrible side effects. also common in most of us. . i hope i was a little helpful. please write back , and let me know how you are doing. meanwhile welcome to the site. i am new here also . good luck to you and hang in there joaniek
Posted 8/12/2005 7:12 PM (GMT 0)
one other thing dane. now you can help me. i am interested in your gluten free diet. i was told that i had that yrs. ago, but found it very difficult, what do you eat? there is gluten in everything. i think that is what flares up my ibs . i was told that i was allergic to gluten. but i just love bread and i am already too thin.. would appreciate your input.
Posted 8/15/2005 12:11 PM (GMT 0)
Hello joaniek, thankyou so much for your reply and sorry for not responding sooner but Ive been laid so low this weekend it was difficult to raise my head, I will reply this evening when my head clears but your contact is much appreciated and has left me feeling less isolated seeing that someone understands. Thankyou so much and I will relpy tonight
David
Posted 8/16/2005 1:58 AM (GMT 0)
just want to say hi and i have cfs and know how you feel

 

Posted 8/16/2005 9:01 AM (GMT 0)
Hello, Thanks only me for your thoughts. It makes me feel better
With regard to Coeliac disease and a gluten free diet, its something that has been with me for 15 years now. Pinned by the old fashioned biopsy method and something that I havnt really thought of with regard to how I am feeling now, mostly something I have learnt to live with and as long as I keep to a gluten free diet it keeps the main symptoms at bay. Lately though with the worsening of my IBS it seems to run in tandem.
`Things are so much easier now to keep to a gluten free diet than when I was first diagnosed. bread used to come in tins then and was similar to compressed cotton wool!! now supermarkets are cottoning on that there is profit in labeling a gluten free item and shopping is so much easier. my latest research shows me that wheat and especially the sticky gluten protein ( remember the old fashioned wallpaper paste made from flour and water? is very hard to digest and I do sypathise with you Joan? as it seems that wheat does flare up IBS. I now find that the modern breads produced with wheat but minus the gluten gives me copious wind and swelling and I think the trick is to use breads made from other substances such as potato and tapioca type flours. I am lucky in England in that as a registered coeliac I can get a prescription season ticket and get my breads on prescription. Some are available that are wheat free and lactose free etc. A good site is www.coeliac.co.uk which produces a food list in booklet form. and gives great help and advice as everyone who helps there is a coeliac I think.
My worry at the moment is how research shows that there are links to coeliac disease and immune type disorders and strange viruses.It seems you either get it as anchild from birth or develop it as an adult as I did (38 and I'm now 55) My suspicion is that when you get it as an adult you have been carrying it since childhood but low grade. It certainly answerd a lot of questions as to strange symptoms experienced since childhood (athirst that cannot be satisfied, anxiety, panic feelings and a bloated sensative stomach. The strange thing about a gluten free diet is that I consider it to have been a healthy diet mostly because snacking on biscuits and pastry, cakes and so on is impossible. My advise now is to balance a gluten free diet with your IBS tolerant foods and as I said avoid the wheat based gluten free foods, biscuits etc that most supermarkets sell. When I feel very ill I find lamb broth , well cooked potatoes and veg done like a light stew is good and avoid overfilling. I hpoe that answers some of your questions joaniek. keep in touch, we can share some valuable stuff I feel. Thanks to everyone for your replys its amazing how a little contact seems to make my world a little more bearable, thankyou
Posted 9/30/2005 4:08 PM (GMT 0)
Contacts are good. That is what I am seeking. CFS is a bummer. My GP was constantly trying to push antidepressants and HRT down my neck and the PCT refused to fund a consultation with a specialist. In the end I paid for myself to go for a firm diagnosis. I have tried the tricyclics for sleep and muscle relaxation but they make me feel really ill and I don't need any extra illness. So I'm living with it with just medication like painkiller, anti inflamatory and anti anxiety plus glucosamine for my joint pain and vits and mins. 'Sfunny, reading some of these posts acts like a dose of medication - a morale booster cos I've never talked to any CFS sufferers before.
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