Dxed with Fibro today

Discussion in 'Fibromyalgia Main Forum' started by Dragoness, Oct 3, 2008.

  1. Dragoness

    Dragoness New Member

    Hi everyone. My name is Amanda and I'm a 29 year old married mom to 3. For 13 years I have had horrible probelms, pain, headaches and more. Been chasing a diagnosis without insurance and I finally saw a neurologist yesterday who ruled out MS (finally) and told me he thinks I have fibro. So since I live in Tahoe and we have that fibro clinic by Dr. Whitcomb here I decided to go in for a consult. I was skeptical, I have read mixed reviews of Dr. Whitcomb, some going so far as to call him a "quack" but in all honesty whatever he did... it worked. He used a tool to apply pressure in the area below my ears right behind the jaw and I am serious when I saw that within minutes the pain was gone. Its only a test so the effects aren't meant to be lasting, but it showed me how his procedure CAN help me. I only hope I can afford it in the future.

    So I am curious to know from others what kind of treatment/medications they have tried and how it all worked?
  2. Nanie46

    Nanie46 Moderator


    Glad you're finally getting some answers even if it's not the best news.

    I have had FM for 22 years...developed after a viral respiratory infection.

    In 2007 I found Dr Dantini in FL who did phone consults for me, as he does for alot of people with FM or CFS. He ordered delayed food allergy testing (sensitivities) and viral testing. I then took and antiviral, Famvir, for 6 months and did an elimination diet. I had significant improvement on day 10.
    I improved about 50-70% during the first few months.

    The results of my elimination diet showed that I have to avoid all sugar cane and corn syrup since they cause pain, stiffness, soreness, brain fog, etc. I take digestive enzymes with the other 20 sensitive foods.

    I had a setback in Feb 2008 after sitting in a hunched over positiion for hours doing tax forms. I ended up with terrible neck and shoulder pain. At the same time I was trying new sleep meds and started Ambien CR. Then I developed horrible incapacitating headaches....turns out the Ambien CR was responsible for the headaches.

    The neck and shoulder pain remains, although less than before. I took acyclovir for 3 months form June-Aug 2008 hoping that would help. I don't feel as well as I did last year, but I'm very functional and always have been. I have to wonder if there are more foods/ingredients that I don't know about that are contributing to my pain.

    I have posted alot of info in the past on delayed food allergy testing and an elimination diet. People with FM tend to develop these sensitivities.

    I exercise 3-5 times a week at Curves. It definitely helps me to keep moving. With inactivity comes more soreness and stiffness. When I started exercising I was more sore for 2 weeks, then it got better.

    I take Calcium, magnesium, malic acid, vit D, fish oil, and digestive enzymes with probiotics from Walmart.

    My biggest issue now is sleep, or lack of it. I am going to see a neurologist this month who is going to order a sleep study. I am not looking forward to that, but maybe it will get me some help in that area. You will find lots of suggestions here on the board. Some you may have to use your judgement whether it is right or safe for you.

    Good luck to you. Now that you have a diagnosis at least you can try some things to see what helps.
  3. jenn_c

    jenn_c New Member

    I have learned that people definately have to have an open mind. I have found that when I can afford to get it, Reiki was a huge help. I dotake alot of meds. Lyrica 450 mg, fentynl 100mcg change every 2 days, celebrex, celexa, xanax, temazepam,rittalin and robaxin. Hope this helps

  4. Dragoness

    Dragoness New Member

    I am wondering if I should take this dx from this chiropracter as an official diagnosis. not sure how I feel, I mean I suspect if its not MS its fibro, but I wonder about Dr. Whitmores motives in diagnosing me. Part of me says he wants me as a patient for the money, but part of me wonders since i todl them outright before even coming in that I simply cannot afford his treatments period and was not willing to take out a loan to get them.

    I am conflicted.
  5. Nanie46

    Nanie46 Moderator


    You are wise to be leary. Some people are helped by chiro and some are not. I was not. You can do some of those treatments at home...heat, cold, stretching.

    Regular stretching, gentle exercise to start is something to consider, even gentle yoga. It always hurts more at first, but like anything if you stick with it your body gets stronger and starts to improve.

    Keep doing alot of research. Use the search on this site alot too.
  6. Janalynn

    Janalynn New Member

    The neurologist diagnosed you right? I would never take a diagnosis from someone who would benefit from giving me a particular diagnosis (Dr. Whitcomb or anyone else)

    Some people do benefit from seeing chiros - short term or on a regular basis, some do not. Do you have a regular PCP who will help you with a treatment plan?

    I'm naturally skeptical - probably not good. =) It probably keeps me from trying things that might work. I just don't have any extra money to try a bunch of unknowns right now.

    For me, the basics - getting enough restorative sleep, getting rid of stress, getting the pain under control, eating right, a moderate amount of exercise is what works best. I do not do all of those things at all times - but that is my goal.
  7. Dragoness

    Dragoness New Member

    The neurologist said he thinks I have it and checked a few pressure points. I got the disctinct idea that when MS was ruled out and it looked like a different problem he decided to just treat the migraines and kinda left the fibro thing wide open for me to deal with :( Didn't schedule follow-up or anything, strage since he put me on neurontin, you would think he would want followup.