Chronic Fatigue Syndrome and Fibromyalgia

totsrats · Posted: Tue Feb 26, 2008 12:23 am Post subject: Chronic Fatigue Syndrome

[quote]

I have been to doctors - Allergologists, EENT's, Gen.Practicioners, Neurologists,and now with a Psychiatrist for almost 15 years now( diagnosed with insomnia and depression); tried many drugs to treat the different symptoms . I suffered chronic and repetitive bouts of flu, bronchitis , allergic rhinitis ,food and environmental allergies and endometrioses ( which led to a hysterectomy in 2004) together with my extreme exhaustion .I was quite desperate that without my faith in God,perhaps I would have given up . These past 2 years, I quit my challenging and stressful job to have rest but didnt get any better; I got even worse and unable to do simple tasks that require concentration and energy. Not one of my doctors told me I had CFS - just found out and confirmed it myself after browsing the net about it. I have recently been diagnosed with GERD and have been to the hospital a couple of times due to dehydration due diarrhea & amebiasis .My immune system seemed to be absent and and for the past 15 yrs. the discomfort of fibromyalgia/CFS has never left me. What kind of doctor should I go to who would ever believe and diagnose and treat me with my CFS? [/quote]

kissaragi · Posted: Thu Feb 28, 2008 6:59 am Post subject:

Heres a 'good' doctor list, hope it helps.

[url]http://www.co-cure.org/Good-Doc.htm[/url]

mike4u · Posted: Thu Feb 28, 2008 11:45 am Post subject:

i think most people that have it, find it out on there own. I had to go from doctor to doctor, and do alot of reading before i figured out that i had chronic fatigue.
The only way i was diagnosed with cfs was when i went to a dr that specialized in it.
If i went to a neurologist, they said i had a neurological problem. I went to a psychiatrist, they would say i had a phychiatric problem.

I just had to do alot of reading and realize that what they were telling me didnt make any sense.

It not easy to find a good doctor. Try to find one that does alternative as well as traditional medicine.Since there arent eally any traditional treatments for it. Alternative is the only thing that is available.

totsrats · Posted: Fri Feb 29, 2008 12:01 am Post subject:

[quote="kissaragi"]Heres a 'good' doctor list, hope it helps.

[url]http://www.co-cure.org/Good-Doc.htm[/url][/quote]

To kissaragi , I'll try to open that site. Hope they have one clinic or branch here in the Philippines. Thanks so much.

totsrats · Posted: Fri Feb 29, 2008 12:14 am Post subject:

[quote="mike4u"]i think most people that have it, find it out on there own. I had to go from doctor to doctor, and do alot of reading before i figured out that i had chronic fatigue.
The only way i was diagnosed with cfs was when i went to a dr that specialized in it.
If i went to a neurologist, they said i had a neurological problem. I went to a psychiatrist, they would say i had a phychiatric problem.

I just had to do alot of reading and realize that what they were telling me didnt make any sense.

It not easy to find a good doctor. Try to find one that does alternative as well as traditional medicine.Since there arent eally any traditional treatments for it. Alternative is the only thing that is available.[/quote]

To mike4u:
Yes , that's what happened to me. Doctors tend to diagnose based on their own specialization. Hope there could be some wholistic approach to treatment of the human body , considering it to be a single unit much affected by every part, not treatment by part only. Yes, I'm now starting to discover alternative medicine . I've tried far- infrared radiation therapy of Nuga Best from Korea and it helps , but you have to continue or else the symptoms come back after several weeks. I am also planning to try acupuncture. I tried foot detox but its a little expensive and I can't see any improvement. I am now taking more natural vit. C and fiber and herb of herbalife. These herbal meds really help as long as I take them daily and I am very very careful in the kind of foods I eat. Oily foods, hard to digest ones and those with preservatives and additives are terrible on me. Chocolates too. I'm still doing a lot of readings to discover how to manage this terrible condition. Thank you so much for this forum, I feel I am not alone. Thank you too for your suggestion. More Power!

canny · Posted: Fri Feb 29, 2008 11:27 am Post subject:

i have alot of fatigue and im not really sure where to go either. It seems like most convetional doctors dont have a clue what to do. They just do a bunch of tests, and then there is really no treatment.
I got prescribed xanax for sleep problems, and he wanted to give me wellbutin also, but im not sure if i want to take that.

totsrats · Posted: Sun Mar 02, 2008 10:45 pm Post subject:

[quote="canny"]i have alot of fatigue and im not really sure where to go either. It seems like most convetional doctors dont have a clue what to do. They just do a bunch of tests, and then there is really no treatment.
I got prescribed xanax for sleep problems, and he wanted to give me wellbutin also, but im not sure if i want to take that.[/quote]

To Canny:
As far as I know, CFS is a condition which afflicts some unfortunate individuals like us and doctors yet have to be born who can publicly stand for us that we do not make up our symptoms-they're as real as us.Hope the medical community could focus research on CFS . As of now , we can only hope ,wait and do our own research to help alleviate our condition to whatever available options we have. All we have now I think is the plan to manage it.
CFS I think it has something to do with our genetic make up,that we are predisposed to it when something triggers or turns on those genes. Its beyond our control. But I hope there must be some kind of permanent treatment once this condition is clearly studied. But what and when could that be???

-totsrats

yorkiegal · Posted: Thu Mar 20, 2008 12:20 am Post subject:

I started slowing down, sleeping alot, not being able to sleep, experiencing pain everywhere and anywhere in '98. By the time I was 52 I was unemployed and bedridden and fighting for SS disability. Went to huge amount of drs throughout qualifying for disability, which I did in 2003 and in 2005 my psychiatrist hit on a treatment that really changed everything: Wellbutrin, 200 mg. a.m. and p.m.; Provigil 100 mg. a.m.; Lamictal 100 mg. p.m.; busprone, 10 mg. a.m. and p.m.; Ambien every night; fentanyl patch 100mcg. every two days; oxycodone 10/325, 4 tablets a day; and Tylenol as needed.

My depression is gone, from the Wellbutrin, my chronic fatigue is controlled by Provigil, my mood swings are out due to Lamictal, my anxiety attacks are controlled by busprone, with Ambien I sleep 10-12 hours nightly (you MUST sleep alot with fibro), and my pain is 40-80% controlled by the fentanyl and short-term oxycodone.

I took the oxycontin route and became physically addicted, so never again, even though it takes 100% of the pain away.

I manage the left over pain by resting on my couch and reading, walking my Yorkie 3 short walks a day, doing my own laundry, shopping, cooking............all the things I didn't do when I was allowing these illnesses to keep me in bed 24 hours a day.

I have accepted that this is my life and until a cure comes along, I still need to live my life.......I gotta say that living this life ALONE is easier than living it with someone who is always asking WHY you feel bad....I'm done with that stuff.

I planned ahead and while I was still married I was getting better and said "I want a car again" and I bought a little used one; I opened a bank account for just me and also while we were married and I could apply using his income, I got credit cards in my name only. Then I hunted around for Tax Credit 42 apartment complexes (not low-income places) and I found a brand new apartment in a beautiful area, all appliances, for under $400.........then got low-income assistance on utilities so they run only $50 a month..........I took half of our nice furniture and moved out and live, rent, utility, food, gas, medicines, insurances and church tithe on just $1100 a month. Truth be told I could do it on $800 a month. There is always a way.

Now I volunteer twice a week for Victim/Witness advocates and while I'm helping others I don't have time to think of me. I still have sad, tired, painful days..........but they never last and the good keeps coming back!

Am I nuts? I am happier than I have ever been and I hurt everyday!!! Oh well, can't have it LL! Cool