new here......does this sound like CFS???

Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, May 22, 2006.

  1. Kathleen12

    Kathleen12 New Member

    For several years, I've been going through periods of severe the point where I can't even take a shower without having to sit down before I'm finished. It can last up to three weeks at a time, then almost sudden recovery. I do have pain, but who doesn't at age 43? The pain is minimal most times.

    I have had blood tests running out the ears and all have been negative. I have also even been tested for MS.

    With all the blood tests coming back negative, the doctors finally said "I guess it's CFS",even when there was no pain on the pinpoint areas.

    My Neurologist perscribed Provigil. Has anyone had relief from this? I've also tried Adderal, which made me too nervouse and shakey, so I discontinued that.

    Please help me understand what is going on? I have spent a fortune on tests and hesitate to have any more done.
  2. alaska3355

    alaska3355 New Member

    but he doesn't have pain. I think that's more the fibro side of it. One can have just CFS but not fibro.

    Unfortunately, there are no easy answers. But you've come to a helpful place. You can do searches here on treatments and natural alternatives. I've been researching the medical writing of Rich Van Konynenburg....very interesting.

    Anyway, welcome to the board. I'm sorry for the reason you are here, but hopefully you will find it a source of information and understanding people. Terri
  3. eeyoreblue02

    eeyoreblue02 Member

    Hi and welcome to the board.

    I have fibromyalgia and not CFS, so I'm not sure about this, but I think the painful pressure points are more of an FM issue.

    The one thing I want to ask you is if you have tested for candida? Do a search on this board for candida. A couple of months ago I posted a website where you take a test. Many of us scored very high. For some reason candida seems to be an issue with a lot of us who have CFS or FM.

    There's also plenty of advice on here about supplements to help you if you do have that problem.

    Hope this helps.

  4. Kathleen12

    Kathleen12 New Member

    Thank you for your reply. I have a couple of questions for you though.
    1. How was your son diagnosed? Was it process of elimination and guess work?
    2. Hwo is he being treated for it?
    Thanks again. There will probably be a thousand more questions for this board as time goes on....LOL
  5. Kathleen12

    Kathleen12 New Member

    Thank you also for your reply. GOSH! you all are fast!!!
    Any way, I've asked my rheumatologist about candida and he just blew it off saying that it was an "'80s fad" and that it was all a bunch of hockey. So that's as far as I got with that. The only thing we have not tested for is my hormone levels....and as I stated earlier, I'm SICK of tests! Again, thanks
  6. alaska3355

    alaska3355 New Member

    They test your thyroid, test for lyme, etc. etc. and if everything looks normal (remember, this was at a traditional hospital!) then it's probably chronic fatigue. We did start going to a regular MD who is a maverick of sorts- he does a lot of nutritional medicine, tests for food allergies, and has a strong interest in the correlation with mercury in the mouth and body. If you have any silver fillings, he feels they either could cause your problem or prevent you from overcoming it. We had all of our son's fillings replaced (ouch! 9 of them!) last fall, and since then, I feel he is slowly improving. It is not the dramatic result I had hoped for....he still needs 11 or 12 hours of sleep each night. He's 19 and able to attend college, but we help him pick classes that we feel he can manage with his brain fog.

    His only prescription is for Cortef, to help his adrenals function. He did test for adrenal insufficiency, so Cortef is helping him. He hasn't missed one day of school since January, which is a great improvement. Somedays he definitely looks exhausted, but he's been able to get through it. He is on lots of supplements, which you can find out the more you are on this board. His doc recommended most of them, but I've augmented a bit due to what I've read here.

    Gotta wishes! Terri
  7. mrstyedawg

    mrstyedawg Member

    Hi, I have had CFS for 22 years. I do not have pain with it is more of an ache somtetimes. Haven't found anyhting yet to help me.

    Did your illness begin with an infection of some type. Mine began with the flu and urinary tract infection. I have spent thousands upon thousands of dollars trying to find someting to help. All of my blood test come back normal. Seems like I have been tested for everything. It's weird when you actually hope that one of your test comes back abnormal but that is where I am at now.

    [This Message was Edited on 05/23/2006]