Was just diagnosed with chronic fatigue. Wanted to see how other people are dealing with
Trying to find medical treatments for cfs
Hello gang! Sorry I took so long to get here after wanting to join.
I have had ME-CFS since 1998, I got sicker in 2005 and even sicker in Sept. 06 when I developed what we now know is Lichen Planus and I also developed Sicca (extreme dry mouth, dry eyes and sometimes other places).
I live in Virginia in the USA. I am 47 years old and have been married 21 years and we have two teens. I look forward to getting to know all of you.
Huggles-Beauty Cochran
Dear Beauty, Welcome! I am new to this organization as well. I have ME/Fibro
and am in the same boat as you - just seems to be getting worse. I am 42. I
was diagnosed about 5 years ago. What medications, treatments are you doing,
and is anything helping you? I will share any of my info with you if you are
interested.
Sincerely, Peg
Hi Sara-
So far for the severely famous fatigue, I have found absolutely nothing that works. I haven’t been this way the whole time I’ve had it. When it started in 1998 I had really bad headaches 24/7. Once they settled them down I did ok until 2005. By 2006 I was flat out exhausted from the disease, the Lichen Planus developed and I was so weak I could hardly get out of bed and slowly I forgot how I did things that I used to do, like “where did my strength go”?" All of the things I used do and still this day but not as bad seemed so foreign and new to me. I’d look at the vacume cleaner and watch my husband vacume and wonder “how did I do that?” I stopped driving because I couldn’t stay awake, I had developed some form of mild narcolepsy or hypersleep but not like depressive hypersleep. Sometimes I think 'WHY CAN’T I DO THAT?" then I remember why. At one point I couldn’t even open a benedryl foil pack to get the pill out so my kids would help or my husband mostly with tiny little things like that. The only thing medically I have done was the Neurontin in 1999 for the headaches and requip for the myalgias in my legs which I am now off of. And in March of 2007 I started a heavy supplimental program.
You are more than welcome to share with me anything that might help.
Blessings-
Beauty
Dear Beauty, Thank you for insight into your life. Funny thing is, it sounds a lot like mine! I do limited driving and even when I go to the same doctor for over a year, I still get lost and have to call them. If I do a little cleaning or cook a dinner, I am down the next day, just as you mentioned. I am taking nuerontin for nerve pain.
There is a supplement you may want to try. It is called “Fatigued to Fantastic” Energy Revitalization System. It costs about 40-50 bucks a month. It is not a miracle cure, but it may increase your energy. It is formulated for Fibro/Me.
My chiropractor was charging 75.00! Much cheaper on the internet. Are you
having any luck with your supplements? Wishing you energy, Sara
Dear Sara-
Maybe some, but not what we’d hoped for.
I got to go off Requip after taking it since 2000. My legs don’t bother me yet and it’s been about two months.
I have gone from 600 mgs down to 300 mgs from 1999 to present on the Neurontin, except for the week of my period I am ok.
My tongue is broken out today from the Lichen Planus and I’m not having a whole lot of fun with it. This comes with systemic illnesses.Do you have it too?
What was the first sign you had that started CFS? Mine were the 24/7 migranes and myalgias.
Huggles-
Beauty
Dear Beauty,
I felt fatigued for years, but could never figure out why. Then, at work, I
started working with clients who had been dx’d with fibro/CFS (ME). They
would tell me their symptoms, and I thought, "wow, they are describing MY
symptoms too. I bought books, did research, and got tested for everything,
Lupus, Lyme, etc. My official dx for ME did not come until about 1 year ago.
My GP knew how miserable and dysfunctional I was and said, I really think you
have CFS.
It took YEARS to get a dx. I just wish there were something that could help
the fatigue! I heard of an Rx (of course I cannot remember it at the moment)
that some doctors give for CFS. It is suppose to help with fatigue, but if
you have anxiety or panic, it is not recommended. If you are interested I
could easily find the name of it. I am pretty sure it starts with a T…
No, I do not have Lichen…or maybe I do? Would you tell me the symptoms,
and are you able to treat with Rx, etc? Wishing you an above average day and
a little less fatigue,
Sara
Hello, I’ve been suffering from bipolar disorder, chronic depression, social anxiety disorder, and ptsd for the past 8 years… Nothing seems to work although changing my diet has helped somewhat…low carbs…and eliminating some grains has also helped…
TJ