I just don't know what to think anymore

Discussion in 'Fibromyalgia Main Forum' started by JMS1011, Jul 18, 2008.

  1. JMS1011

    JMS1011 New Member

    Hello All,

    I have been diagnosed with fibro about 1 yr ago. At the time my ANA andother tests were negative. I had a horrible rheumy. I went ot see my uncles Rheumy and at the first visit he said I had bilateral bursitis and tendenitis. He also repeated some of my blood tests. I now have a positive ANA. It's been tested a few times and is low ut positive. I am so thirsty all the time. I have bruises ad red blood spots on my legs, arms and other random places, red splotches and/or bumps randomly all over my body. I have been told that I have have an autoimmune ldisease but haven't been given an exact diagnoses YET. The doctors records say "not yet". So I guess this whole thing is a waiting game. I just don't know what to think about what is wrong with me. So frustrating. I'm sick of waiting and bouncing around from one appointment to the next while my life is wasting away. The rhuemy that I like recently took of out of state and left the practise and now I have no one and no meds to help. Getting really discouraged here!!!!!!
  2. PVLady

    PVLady New Member

    Just a thought, is there any chance you could have Lyme? Also, have you been tested for Epstein Barr Virus? I also had many of the same skin rashes including two years of severe hives.

    It is frustrating but with auto-immune problems it seems always difficult to get a diagnosis,and even after that, there is no miracle cure.

    There are general things you can do to help, whatever the problem is - like getting enough rest, proper nutrition, reduce stress as much as possible, reduce sugar and no alcohol - anything that will compromise your immune system further.

    Many of us are type A personalities and want to run all the time.

    You mention being thristy all the time - I am assuming your doctor has done all the blood work to rule out diabetes.

    You might try reading the latest revised book by Dr Teitlebaum "Fatigued to Fantastic"

    He really explained fibromyalgia and the best treatments.

    I will tell you something that helped my pain tremendously. We all have our stories of what has helped so I am not saying it would be for you, but I will share it anyway.

    A month ago I started using a good protein drink once a day. I also added a supplement powder called "Miracle Reds" I add to the protein drink. I also started taking Co Q 10 and Glutathione capsules each day. I found these at the health food store and you may also see them on this website's store.

    I honestly believe many of us have borderline vitamin deficiencies. Along with all my fibro problems I had developed digestive problems. This resulted in not getting proper nutrition because I cannot tolerate eating alot of foods.

    The "Miracle Reds" is concentrated powders of abour 30 different fruits including Acai. I noticed my muscles no longer stiffen up and seem to recover fast. Many times with fibro, if your muscles are the slightest strained, you wind up hurting and in bed.

    Anyway, since starting the drink and supplements, I feel my digestive system has healed plus my muscles are so much better.

    Everything is "trial and error" as to what helps. That is what is good about this site as you can read what has worked for everyone else and try some things for yourself.

    If your doctor is not helping you with pain, I strongly suggest you work to find a new doctor who understands fibromyalgia.
  3. stumped

    stumped New Member

    Hello jms... I dont have FM but I am sure discouragement has its place in all of us at one point of time or another. Keep focused on the solution to your health issues and seek out other avenues to proceed too. Please dont loose focus. I sure am happy you had voiced yourself and am certain someone will come with an answer for you. I wish I did. I do know this,...when one door closes, another will open. I suggest you go back to your medical center and ask for another rheumy and explain your situation of being left out in the cold by an incompitant doctor. And ask them if there is such a thing as a "compitant doctor with integrity who has any ethics in this medical center" Stand your ground and get the answers you deserve. "A closed mouth never gets fed". pvlady has some good suggestions. Stay strong jms. I will watch for your results. Your in my prayers. Stumped pop....Rick