starhawk wrote:I'm familiar with the disorder... a relative of mine has it, as does someone else in my town. Based on everything I've seen, to say "it's all in your head" to a person suffering from that stuff, is very nearly the penultimate form of "adding insult to injury". It's disgusting to me that anyone would even think that.
The fellow in my town who has CFS, works at the local Radio Shack. I really don't know how he manages. I really don't.
The relative (who shall remain anonymous)... CFS ruined their life. (Actually F/CFS -- they have Fibromyalgia as well.) They're still here, but their life is nothing like what it once was.
They once had a great career, plenty of money, and a real future.
All of that is gone now.
Every day they slog through the metaphorical muck of simple existence made so much harder than it should be. It's hard work, and I don't know how they do it -- or why. (If I had that stuff, I'd be dead fast. I simply don't have the constitution --or mental faculties-- to handle it.) They are just short of waiting for the Reaper.
I hope someday soon they find a way to cure, or at least lessen, CFS, Fibromyalgia, and similar diseases/disorders. It would be --IMO-- nearly as important as curing cancer. Actually, on that note...
The thing about cancer is, cancer (eventually) kills you. That's part of how it works -- it runs its course and then you're free (in so many ways). F/CFS is different -- it stays around and tortures you every remaining day of your now-miserable life until something else grants you the mercy of death. Your condition will never improve (at least until modern medicine gets its act together), it will only worsen -- and it will never go away. Once in a while it will get slightly less bad, but only slightly, and only for a short time -- and when it comes back to full strength, it does so with a vengeance.
I think that makes it worse than cancer. I'm not religious, but F/CFS is as close to "work of the Devil" as I've ever seen.
sickgut, while I can't say I know your pain, I know some of what it's like to be in your situation. My heart goes out to you.
in the early 1990's CFS/ME was CFS. People would be diagnosed for a damn good reason. The CFS label has been used very loosely in recent years and now its not a name for a real disorder, but many doctors give this label and people label themselves as CFS for mildest of symptoms or just being tired.
Chronic Fatigue is quoted in diagnoses for many many people these days but that is different from chronic fatigue syndrom. But when you mention chronic fatigue syndrome to doctors/ social workers etc, almost always now they just think your going through a phase of being tired ie, chronically fatigued.
I know someone who was diagnosed with CFS and it lasted 3 months and now they are normal, even with the diagnoses they where working standing on their feet all day in macdonalds the whole time in full shifts.
alot of docs realize this now and when you mention you have CFS they presume its a minor diagnoses. the new doctor here in my local GP doctors clinic was amazed when i mentioned it was lke a flu that never went away. Yes them it first hit i was bed ridden for 2 months, and it never got better, i just learned to deal with it better.
She was like "flu symptoms? aching bones? discomfort and nerve pain keeping you awake at night?" no this isnt CFS. You probably just have a cold.
yes, a cold that has lasted 17 years.
the thing that messes with me is the brain fog and when you mention that doctors automatically think psychosomatic disorder or skitzo. And i have yet to meet a doctor other than the CFS specialist i was seeing in the early days, that tries their hardest to pin skitzo on you, and throw zypraxia, mellaril and other things at it. Now this would be fine. Yes those things can help with depression etc and on paper it sounds good. However im allergic to so many meds and have modified QT syndrome when i take SSRI or drugs that can cause drug induced QT syndrome and i simply cant take those meds.
However i do have a theory of my own. CFS symptoms are hard to quantify with conventional blood tests etc (somethng will always be out of whack but the symptoms you have are worse than a normal person with the same blood work). There has been research to suggest that there is a nerve to immune system interaction happening with people who have allergies, but not true allergies, im meaning "sensitivities" to certain things, these are mostly nerve reactions to common chemicals etc. I believe that the actual symptoms of CFS are caused by a kind of epilepsy that is triggered by external things you are sensitive to. These sensitivities cause real physical symptoms but very little actual damage to the body, you sweat, dizzy, feel faint, anxious, either oversleep (not oversleep but need to sleep more, im meaning you need to sleep more than a normal person) or have insomnia and these are all nerve symptoms.
i think CFS symptoms are triggered by your nerves being screwed to the point it affects your blood work. Many people can 50% fix this with sedatives and painkillers, but doctors these days wont prescribe them. I tell my doctor that i dont care about addiction to these things (physical not mental) because my natural cfs symptoms are worse than coming off benzos or painkillers cold turkey. They look at me blankly, obvious they have no clue of the pain and discomfort someone with CFS has. I have had success with dilantin and that is an convulsing med. It works wonders for nerve pain , beter than pregabalin or gabapentin, however im allergic to dilantin, i can take it ones or twice in a 2 week period but more than that im covered in a rash.
in the absence of a cure, band aids or the only option. We need a painkiller (poisonous crap kind of helps) and something to treat nerve pain and or sleep and in my case i can function maybe 20% more or so.
but i hate doctors attitude, instead of treating you with potentially addictive drugs (not the patients fault they are addictive, ive never abused any drug) that can actually work, i get a lecture about how much of a bad person i am if i take these drugs and im way better off not working and staying at home in a zombified state of exaustion and on a pension and no social life because your too tired to string a comprehensive sentence together. i actualoy find it way easier to type than speak. even talking on a bad day is too much sometimes. Even addictive drugs are safe if you dont abuse them and your doctor weens you off them. I ween myself off some sedatives myself because i get tolerant to them, when thay dont work much anymore, i take half and then a quarter and then go back to full dose and the drug will work for another 3 months or so.
ive never asked for an increase in my sleeping meds because self weening on and off works the best.
doctors dont believe me when i say i can mange the dosages like this. One time recently i took half my poisonous crap for a while to ween off and then returned to a full dose. When i went to get my prescription filled with my doc, the doctor didnt believe me and simply accused me of doctor shopping to get more meds or obtaining them illegally "so where else did you get your poisonous crap?" Apparently no one ever is capable of managing the withdrawal / tolerance and will always seem more drugs is the medical professions opinion.
I am annoyed because my wife left me because i was a zombie that was too tired to talk much and spent time doing activities with her. However when i have the meds that work, im just normal and we have alot of fun together. basically simply because the docs dont wanna treat my condition, im now alone and lost the love of my life. She will come back when i can actually spend quality time with here. I simply walked out of a GP consultation after she said that its worth it. Actually tried to tell me that im better of not working and separated from my wife rather than take a drug that is potentially addictive.
Yes, i know it makes not difference to you, mr doctor if i work or not or have a happy home life or not.