Strong suspicion I have CFS/need advice as to where to go from here

Discussion in 'Fibromyalgia Main Forum' started by ~jean~, Sep 22, 2011.

  1. ~jean~

    ~jean~ New Member

    Oh boy. I have been dealing with this for so many years. 16 years I think. I would so much love to find a doctor who understands! (I'm in Nebraska) For me it's all been trial and error as to how to treat this. Mainly been using supplements. When I do see a doctor they only focus on the depression and try to get me to take medicines which I have tried many of them to no avail. I have come to the conclusion there is an underlying condition taking place which is causing me all these symptoms. The worst of them is the fatigue, brain fog, memory problems, muscle weakness, sore throat when tired, and occasional muscle spasms. I probably am boring you to tears so will stop here.
    I did just begin to read a wonderful book called, "America Exhausted" by Dr. Edward J. Conley and I see he has a fatigue and fibromyalgia clinic in Michigan. But for someone who is paycheck to paycheck? May be too pricey for me.
    That is another of my biggest problems to getting help...the cost. No insurance but it seems most of the more natural health providers can't use regular insurance anyway.

    Any advice for me?
    Thanks, I appreciate it!
  2. Mikie

    Mikie Moderator

    Cost thousands of dollars. They do a lot of testing but I have yet to hear of anyone who was cured, or even greatly helped, by these docs. If anyone has, I hope he or she will post here. Unfortunately, once people start to feel well, they often leave the boards.

    Everything which helped me is something I first learned of here and my docs and I did everything on the cheap--empirically.

    I did a ton of research when I first got so sick I had to stop working. Dr. Cheney is an excellent source for us and our library is full of his papers and interviews. Best of luck to you.

    Love, Mikie
  3. rockgor

    rockgor Well-Known Member

    Welcome to the board. Lots of nice people here to talk to. You can find a menu for the
    board in the upper right hand corner next to the board rules. You might want to visit
    the Chit Chat board which provides some social life for those of us who don't get
    out much anymore. A place to discuss kids, pets, music, recipes, jokes, etc.

    With regard to fatigue and fibro clinics, you can search for prior posts. Might also be
    info in the "Research, News and Articles" section above. My recollection from prior
    posts is that most people reported poor results. A couple folks said they had just started
    treatment and were hopeful. One poster said something like: don't even think of
    going if you don't have $5,000 in cash.

    Good luck
  4. sascha

    sascha Member

    read all you can about cfs/fm. stay tuned in to websites like this one, and Phoenix Rising. if there is ?? possibly a support group anywhere around in Nebraska, would be great to connect in with people there, if only through computer/phone. and there's the Whittemore Peterson Institute in Reno. keep in touch with these places- get information wherever you can.

    i kind of self-diagnosed, and then got confirmation that i have cfids. i'm lucky i'm in a city and close to Dr. Montoya (south of San Francisco)- i wish you could see him. i know he's really booked. he is so nice, so knowledgeable. so in our corner (us cfids people). i'm in his current research study.

    also important to have a Primary Care Physician who believes you. i have a great one.

    i've been ill for going on 12 years now. i always always working on it. i keep finding ideas of this and that to try. sometimes i feel i'm making progress.

    yes- you need a firm diagnosis. try and find a knowledgeable doctor to help you somewhere. do not doubt there is something going on with your health. go to an expert. and know that so many many doctors and researchers are now committed to getting us answers, and treatments will follow from that. best of luck- Sascha
  5. mbofov

    mbofov Active Member

    You're not boring us, you just sound like most of us. I have found it is next to impossible to find an M.D. who can help. Most do just what you have experienced.

    Have you ever tried a naturopath? They will look at things regular doctors don't, including thyroid (beyond standard medical tests), adrenals (your chronic sore throats when tired can be caused adrenal weakness), your muscle weakness also can be related to weak adrenals, and so on.

    Also, I was helped on several occasions by a competent chiropractor who does muscle testing, after getting no help from regular docs. This was invaluable for me.

    And unfortunately, as you note, most natural health care providers aren't covered by insurance. I pay out of pocket a lot. That's just the way it is.

    Take care-

  6. Jittle

    Jittle Member


    Hi. First nice to meet you. I grew up in Lincoln until middle school.

    I found D-Ribose for fatigue. It is a powder. If you are interested do a search on main page there is a post about it. Like others have already said, read as much as you can and check in with the message boards for some great info, and great people. Also, what I am learning right now, is try not to stress out. I am in great pain and tired and it is all do to stress. Funny part is the stress that is causing me pain and to be tired is because I am stressing out about the same issues.. This board is the only time I can relax lately.

    I know how you feel about the doc. I am dealing with that with my rhuemy. He thinks I need a therapist, but he does not realize is I was not upset or depressed before the fm/cfs, and I am only depressed when the pain is bad or I am tired. Thinking back one of the original doctors I went to he had me on zoloft for years: Siad I was stressed and it was all in my head. I wish I knew where he was now:LOL

    I went through the same thing. I was tired for years and did not know why. I kept saying to my husband that someone is not normally this tired and something must be wrong. this went on for a good 5 years and countless doctors before I was referred to pain management and a good year with them before they said FM/CFS.

    There is another good book I just finished called "from fatigued to fantastic". If you get the chance to buy it. You could alos look online for used copies. It talks about the ribose and trying other supplements instead of going right to prescription meds. Trust me I have both and will do whatever I can to fuction to the closest I use to be: Some days I win, and most of the time FM wins.

    A few things I can recommed that I picked up along the way.... rest when you need to, even if it the entire day. And learn the art of saying "no" and "you can't do that". I was unstoppable before this, and it was hard for my family to accept but after reading everything I send them, and hearing "no" when I never use to say it before they are finally catching on.

    Good luck we are here when you need us.
  7. ~jean~

    ~jean~ New Member

    Your response to me was invaluable. I appreciate your sharing your experiences and that of others and will continue to do research on my own instead of checking out a CFS clinic. (don't have the money to go that route anyhow :) ) I know I need to find a doctor willing to work with me if I end up heading towards using prescriptions.
    I will look into Dr. Cheney's writings as well.

    Did you ever have tests done to rule out other things first? I have hypoglycemia often as well as vertigo, etc.

  8. ~jean~

    ~jean~ New Member

    This sounds similar to what Mikie said. Good to know! Thanks Rock!

  9. ~jean~

    ~jean~ New Member

    Thanks for sharing all of this information. I have felt I needed to get a firm diagnosis to make sure I am treating what I actually have and for confirmation that what I suspect is right. But where to go and do I go?
    I once saw a Rhematologist and was told I do not have FM.
    I have a sister who is disabled due to FM/CFS.
    There is a PA here in town who I heard will work with a person as far as prescribing things you've heard of but to me this is kind of scarey considering her lack of knowledge on the subject. Also I've seen her before? And she told me I had depression which was causing the other symptoms instead of the other way around. (wanted me on yet another antidepressant which I've ran the gamut on so many of those and only got worse)

    I had thoughts of getting into someone's research study but am working and am paycheck to paycheck.

    Thanks for posting. It has helped me!

  10. ~jean~

    ~jean~ New Member

    I have looked into seeing an ND. There is only one in our state and it is $300 some dollars for initial exam. I may still see him but unsure if he is knowledgeable on chronic fatigue, etc or not. I still may however. Unsure at this point as money is an issue.

    There is a couple of chiropractors in our small city. One thing that makes me afraid is the new age techniques used which I am afraid of and against at this point. Still considering however.

    I do believe I am having adrenal fatigue as have read in "America Exhausted" by Dr Edward J Conley that if you have the hypoglycemia then you have the adrenal fatigue. I have suspected this as well. Today my arms and legs feel so heavy and this happens when I overexert myself. (did painting as well as yard work yesterday and now the pay for it comes)

    I will look into muscle testing which at this point have no idea what that is.

    I don't have insurance anyway so paying out of pocket is how I'd have to go regardless.

    Mary, thank you! You've encouraged me!

  11. ~jean~

    ~jean~ New Member

    The Armour thyroid is a prescription isn't it? I have heard of it.
    I have considered the DHEA and grapeseed ex so appreciate your sharing it works for you.
    I had started some supplements before and then got off to save $$$ but ended up paying for it. Got back on and plan to experiment with some others little at a time.

    What is OA? Osteoarthritis?

    Thanks for sharing what works for you.

    I am listening.

  12. ~jean~

    ~jean~ New Member

    I have grown daughters who live in Lincoln.

    I have the D-Ribose on my list of things to try. So the powder form is better then?
    I will do that search on the main page to read about it, thanks.
    I had pain for quite awhile but that has ceased. I think due to backing off of citrus/sugars and breads/pastas. The citrus was really making it bad for me so don't eat oranges anymore. I had heard the citrus causes some kind of acid to build up causing pain.

    I do have the book From fatigued to fantastic. Bought it so many years ago. Need to drag that one back out and read it again.

    I am willing to take supplements OR prescriptions at this point and wonder if the combination would be a key help for me.

    Having to say no. Hard for me as a type A personality. Even fatigued I press myself. I am considering changing my work as am a janitor at a school part time/am a personal assistant for an elderly woman and her husband/have another cleaning job and work at the city library. Husband is starting up a new business and may go into that with him when able as would be more flexible when having troubles.

    I am afraid to rest too much as in the past I found I could stay in bed for literally days and become even worse. So I try to get to bed early and rest inbetween jobs when able. My fear is that I will relapse so much I won't be able to work and then what?

    Thanks for being there and sharing with me!


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