I'm so happy I've found you all.

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by Shellym, Oct 10, 2015.

  1. Shellym

    Shellym Member

    I believe I have had CFS for 13 years now and feel so alone with my suffering. The first few years I was diligent in going to doctors, but after various false diagnosis, accusations of psychosis, and more prescriptions than listed on WebMD, I quit pretending that there was a dr. who could help me. However, I am desperate again to find some relief. Does anyone from MN know of a good dr. that treats CFS? Also, could you share with me anything that has helped you with the fatigue? After not having to drive myself to work for the last 8 years, I am back to doing so and I am having difficulties staying awake while driving. Also, I have a new job and don't want to lose it by calling in sick. The thing that works best for me is eliminating sugar and white flour, but is not a for sure. Thanks for any help you can give me and again, I'm so glad I found this forum.
  2. rockgor

    rockgor Well-Known Member

    Hi Shellym

    Welcome to the board. Let me give you a quick tour. If you click on "Forums" at the top
    of the page, you can see the table of contents for the different boards. The porch, where
    "The Porchlight is On" is a thread with no topic. Folks just drop by and talk about what
    is going on with them. A good place to chat about kids, relatives, pets, pet peeves, TV shows, movies, books, old music, new recipes, etc.

    You can find the board rules at the top of the page (blue line). We avoid contentious
    topics like religion and politics. Click on "Shop" if you want info about supplements.
    "Supplement News" has reports about developments; research; etc. There is a tool bar
    at the top of box where you type messages. You can change the font, add color, etc.

    If you click on a poster's avatar, you can get some info and pull up posts from the past.

    I have CFS; very little energy; was born during the Roosevelt administration. Thank
    goodness I've kept my stunning good looks and sense of humor. Understandably, this
    board is my social life.

    So how are things in the North Star State? I grew up there. SE Minnesota near
    Rochester, Winona and La Crosse. Haven't been back for quite a few years. Moved
    to California about half a century ago. Here's the difference: California has nicer
    weather. Minnesota has nicer people.

    I don't know any Minnesota doctors, but somebody might. Our posters report
    various supplements and meds that have helped them. I got some improvement
    several years ago from Vitamin D3 and grapeseed extract plus a third supplement
    I can't remember. (I've added Alzheimer's to my long list of ailments.) Best of
    luck to you. As our Norskie friends say,

    Ha det bra

  3. JKN913

    JKN913 Member

    Hi Shellym, Welcome
    I am not from Minnesota so can't help you with the Dr.'s. I don't really go to Dr.'s because, as you said, there is very little they can do besides medication. I am sorry you have to start driving again. I know how that is. We actually moved so my drive would only be 2 miles instead of 25 to work and back (well that was one of the reasons anyway).

    As for the fatigue, it is so hard because every one is so different. As for me, I really watch my diet. I started by cutting gluten, sugar and chocolate, but then I found that some grains, potatoes and various other foods really bother me too. Foods that used to never upset me now can put me down for days.

    I also watch my exertion, stress, sleep, etc. I do pretty well if I really stick to it. I can work and do a few things, but am much more stagnate than I used to be for sure.

    What do you do for work? What else do you do - for fun?
  4. Soul*

    Soul* Well-Known Member

    Hi Shelly,

    Replacing a lot of things in my diet has helped me most too, that and pacing, but after 18 years I still haven't found anything that helps me with the overall fatigue, though painwise I'm doing much better then I did in the beginning.
    Not giving up though, I keep trying out new things and new ways to do things.
  5. I'm new from KY I have a good doc in INDY has helped me I still sleep 3.5 hrs a day but google adenosine compounded from AMIP in troches if you can get a doc to call it in l00 mg 4 to 5 time sa day but the ins. cos. don't want to pay for it NADH helped but had to drop as the price tripled, now the top docs are compounded oxytocin (read about cfsand oxytocin) most need compounded glutathione also there's four for energy right there

    I've had some success using extra strength 5 hr energy with a troche of l00 mg adenosine or AMIP to pretreat my fatigue and get up and hr. later, I've got more use Quercetin for food sensitvies from your health food store FROM dehydrate only it will say on the lable I don t eat gluten or milk but drink powdered goat milk
  6. Mikie

    Mikie Moderator

    Hi, ShellyM,

    I'm so glad you founds us too. I was like you before I found this wonderful place. I had my CFIDS/ME triggered in 1990 and went on to acquire FMS and Sjogren's Syndrome. I don't know what I would have done without all the caring support and info supplied by everyone here. Before that, I felt as though I were alone without diagnoses and help.

    I found the easiest way was to search for docs who treat immune and autoimmune illnesses. My first doc was a physiatrist, a doctor of physical medicine. He was just getting into treating FMS. Since then, I've been fortunate enough to have docs who believed in me and my conditions.

    We used to have a list of good docs here but it is no longer available. Have you done a search online for docs in MN who treat CFIDS/ME and/or FMS? Even with the best of docs, most of us have found that we have to do our own research and try new things. This website has lots of articles on our illnesses and the newest research into them. You can sign up for the newsletter and you will receive it via e-mail. The store here has excellent supplements and proceeds go to fund research into, and advocacy for, what ails us.

    I want to wish you the best of luck. Over time, many of us have found things which enable us to live with our illnesses and a few are in remission. I've had remissions but am in a relapse right now. I go into what I call my 'Survival Mode' and only do what I have to in order to survive. Be good to yourself. We are here to help if we can.

    Love, Mikie