Lemme introduce myself...

Discussion in 'Fibromyalgia Main Forum' started by caraG, Nov 25, 2003.

  1. caraG

    caraG New Member

    Hi there, I'm Cara. I'm 45, recently self-diagnosed with CFS as my doctor gave up and sent me away, scratching his head in wonder. I had two years of "migraines" which never behaved like migraines (lasted no less than a week, often 5 weeks, eventually last year it became permanent; never less than 3 out of 10 in intensity, often 7 out of 10). Over the last 2 years, I had bouts of fatigue and weakness and low blood pressure (70/40) and other complaints that were odd. Then in June my body just gave out, I got so weak and tired, and my head felt like it would explode. Several trips to the ER ensued, with no results of course. I finally was diagnosed with hypothyroidism, with a TSH of 10.5, and when that was corrected with Synthroid, I expected to feel all better, but I didn't. I was so weak I couldn't muster the strength to go downstairs to eat, nor the interest in eating; I lost 15 pounds, now weighing 100. My muscles burned like I'd run a marathon if I simply raised my arms above my shoulders or walked up the stairs. I had tinnitus 24 hours a day, and the pain in my head was intense. I was dizzy and unsteady on my feet. I was forgetful, easily confused. I felt like any stimulus was enough to overwhelm me as my head was filled with so much noise and internal craziness already.

    Anyway, blood tests and doctor visits have ruled out other problems, and my primary care physician, an osteopath, has finally given up, saying I should see an internist to continue to try to find the cause of my fatigue and weakness. I signed up with a new internist, having high hopes, but when I mentioned chronic fatigue, he rolled his eyes, saying in essence that CFS is not a diagnosis but something you tell a patient they have if you have no idea what else might be going on, like "oh, who knows, maybe you just have chronic fatigue syndrome." He wouldn't even consider it. He said I'm probably just depressed. Well, yeah, after talking to him, I was.

    I've tried ginseng for some energy and thought for a bit it was helping, but now I'm doubtful. I think I was just having a "peak" in a disease full of peaks and valleys. I haven't worked since July; I am now officially unemployed. Anyone know an empathetic doctor in the East Valley of Arizona, or for that matter anywhere in the metro Phoenix area? I just want a doctor who understands the disease and would evaluate me for it. I'm just a shadow of myself. I wake myself up repeatedly all night groaning, just because everything hurts, not outright searing pain but unending discomfort and pain 24 hours a day. Oh, and I also have had oral thrush for 3 months now, unresponsive to Diflucan and two series of Mycelex troches. I'm now on Cobra insurance which costs over $300 a month and my mom has to pay it since I don't have a job. Boy, don't I feel grown up?! Help from anyone would be most appreciated. Thanks everyone.
  2. hollym

    hollym New Member

    Welcome, and so sorry that you have had a rough ride.

    Have you been checked for Candida? It can mimic and worsen many of the symptoms of fms, would assume that goes for cfs also?? Oh, and they are SO real diseases, are so are so....lol, feel more grown up yet??

    Never taken Diflucan myself, but I'll bet others can and can advise you? I'm doing natural yeast battle, and maybe we are at least at a tie, lol.

    Hope you get some answers, you more than likely will.

    Best of luck!

  3. Shirl

    Shirl New Member

    Nice to have you join us. But am so sorry you are so ill and can't find a good doctor. I have listed the ones in Phoenix, AZ. for our 'Doctor Referral' link at the top of this page for you.

    There are others in AZ., so if you want you can go look for yourself for others in close proximity to you.

    Again, welcome to the board, and I sure hope you find some help soon.

    Shalom, Shirl


    Phoenix, AZ
    David R. Furrow, D.O.
    3201 W. Peoria Ave. Suite D-700
    Phoenix, AZ
    Tel: (602) 439-3983
    ("Dr. Furrow does referral FM/CFIDS patients, but also does primary care. Specializes in manipulation treatments, but uses other integrative methods as well. Takes time with patients, and is very caring and supportive. Has helped a lot with my pain.")

    Oasis Structural Medicine Center
    1950 W. Heatherbrae Ste.1
    Phoenix, AZ 85015
    Tel: (602) 266-5055 Fax: (602) 266-5223
    (There are a number of physicians with this group who see CFS/FMS patients.)

    Scottsdale, AZ
    David R. Furrow, D.O.
    8300 N. Hayden Rd. A-200
    Scottsdale, AZ 85258
    Tel: (480) 596-1530
    ("Dr. Furrow does referral FM/CFIDS patients, but also does primary care. Specializes in manipulation treatments, but uses other integrative methods as well. Takes time with patients, and is very caring and supportive. Has helped alot with my pain.")

    Darice M. Putterman PT, CAAAPM, CTIACA
    (Physical Therapist)
    Office: Valley Therapy Services, PC
    Darice Putterman, PT, CAAAPM owner/director
    8300 North Hayden Road A-100
    Scottsdale AZ 85258
    Telephone: (480) 922-1376
    Web site: http://www.valleytherapy.com
    (Board Certfied in Pain Management by AAPM
    Certified Cliical Acupuncture
    Expert witness for Complicated pain syndromes
    Internationally published author, lecturer and instructor about FMS/CFIDS and Complicated pain Syndromes.
    Expert diagnostic Surface EMG for objective measurement triggerpoints, tender points, movement dysfunction assoicated with, consequence of FMS/CFIDS
    Listed as specialist International myopain society list.
    Team approach with hands on, one on one, no unattended modalities individual treatment. Strong patient advocate. Has lecturered numerous FMS/CFIDS conferences in the USA.)

    Dr. Gary Silverman
    3337 N. Miller Road
    Scottsdale, AZ 85251
    Tel: (480) 941-3991

    good doctor!
  4. coping1961

    coping1961 New Member

    sorry i do not have alot of answers for you. it sounds like you have alot going on. would like to tell you to use the search at the top of the page. this will get you started in the right direction. i know when i first joined i read back maybe 20 or 30 pages on this sight and just could not believe so many had all of the same problems i had been through. so if you have energy read back as many pages each day that you can. i promise you will find many others with the same things going on in their life and you will not feel so alone. good luck and know you my not find a cure but you can feel much better than you feel now. hugs karen
  5. autagava

    autagava New Member

    If you are looking for answers and want to get better than you are at the right place. I have sucked the knowledge out of so many of these ladies and I am better for it!
    In my case the simplest step was to attack the Candida, go on a low carb diet and find a good health food store. I too had the thrush and the yeast covered my esophogus so bad that it was hard to swallow!
    I do not have the fatique but I had the burning in my muscles and I hurt just to move. I no longer have the burning in my muscles. The headaches are gone and all the muscle spasms.....THANK GOD!
    Am I completely cured NO but I have some what got most of my life back but not before I had to quit a job that I absolutely love which is so sad.
    I wish for you a good doctor that can help you, Tresia
  6. shannonxxx

    shannonxxx New Member

    Hi Cara,

    You do have your hand full. Are you alone, then, and living with just mom?

    You might also want to try a physiatrist (pronounced fizz-EYE-ah-trist) - they have some add'l training in chronic pain mgmt. I wasn't under very good control until I went to him. I'm sure you'll be able to find some doc's there. Isn't there a teaching hosp. there? try that, if so. I know it's a good medical community. Also when you call for an appt. ask if the doc treats FM/CFS. If they don't know what you're talking about, hang up; and move on to the next one.

    Thrush. I didn't get appropriate treatment until the nurse told me what it was. And it didn't behave as usual, so the doc didn't want to do a culture. Get on 3 - 6 acidofolus a day, eat plain yogart; don't eat anything that has yeast. Ask for Liquid Nystatin. It's cheap. And if it's too far out of control, you will need to go on an antibiotic. If you don't have a doc you can call, go to the medexpress, or the ER, and tell them what you want. If you get no cooperation, say you'd like to see a different doc.

    You need to apply for disability. Now's the time, as you'll be getting turned down at least once (I did twice) and then will have to get an atty to plead your case, and he'll get paid out of disability money. In the mean time you may want to try for Medicaid; if they can't help you, ask them who can.

    There is something called Myofascial Trigger Points. It will help if you can get to know how to do them yourself. Get Devin Starlanyl's book and read it all the way through. Most library's have it, or will order it. and it's $20 at the book store - the first book she wrote, althrough I think there may be a new one out just recently - ask them.

    Start writing a journal. just a touch about what happens every day. It'll help your doc and your disability case, and I suspect it'll help you keep your wits about you, too.

    That's all for now. It's a lot, I know. But just begin working at all these things. I'm sure you'll feel a lot better once you can begin to feel that you can have some impact on your life.

    Keep in touch now.

    Hugs, Shannon

  7. shannonxxx

    shannonxxx New Member

    I forgot to say, also, try to get to a support group. you need that support.
  8. muttmeg

    muttmeg New Member

    Your post was so long ago. I do hope you're still hanging out, unless of course you were one of the fortunate ones who get to recover. Did you ever find a REAL ME doctor? I need one now like crazy. I have been cut off of SSDI for foolishly trying to return to work full time, late in 2010. I was desperate to try to be able to afford to keep my son in safe housing until his apparent schizophrenia and delusional behavior could be evaluated and treated, to make one last ditch try at saving my professional career and identity and finally to try to help my parents from losing the family home in Telluride (a direct result of supporting my kids and me, beginning first with a Traumatic Brain Injury in 99 then getting ME in 2003). I was also literally out of my head, following an as of yet unexplained Thunderclap Headache which resulted in profound HA and chronic head pain for 18 months solid. But hey, I was determined to try to RTW, so I just kept myself functioning with large doses of Percocet and Gabapentin until I pretty much collapsed into an exhausted, very ill, ashamed heap in the office at work at 11 am on Feb 8, 2011. I was more ill than the onset illness. I have not regained the relative health I had the year prior to that February. Not by a long shot.<BR>
    I used to think, (I am a Physical Therapist) well at least I don't have MS, because that is a progressive and systemic illness. So much for that thinking.<BR>
    I have to find a doctor who is current and serious with the documentation of any objective findings which would correlate to my disabilities. My mom is supporting me, while my dad has Alzheimer's. She mave Pancreatic Cancer and has aged so much, I simply cannot go on without at least my SSDI payments being reinstated. I need help!<BR>