New and could use some input, please

Discussion in 'Fibromyalgia Main Forum' started by Reba64, Feb 20, 2006.

  1. Reba64

    Reba64 New Member

    February and March 2005 I had mono, tested positive for the flu, had bronchitis and a sinus infection. I was off of work for 6 full weeks.

    During the spring and summer I felt better, though would easily tire and slept in on weekends as well as a nap on most evenings.

    In August '05, a friend and I joined CURVES and I believed it would help my lack of energy and hoped it would boost my immune system. It seemed I had a sore throat often during the summer, though I blamed it on allergy drainage.

    In Sept. my knees hurt terribly and I stopped going to CURVES. As long as I didn't overdo, my knees were a mild ache.

    2 weeks before Thanksgiving I thought I had a crick in my neck. I was unable to turn it left, right, up nor down. I had difficulty at work, driving was painful and sleeping was very, very difficult.

    During Thanksgiving week my husband and I went on vacation. It was somewhat better when we came back home. During one week in December, it was not painful at all, and I felt fine, other than not sleeping well and the never ending tiredness. The sleeping problems had been persisting for approx 5 months or so.

    The week prior to Christmas I had another sore throat. By Christmas weekend I was in bed, felt like I had strep throat, and the muscles in my neck, shoulders, biceps, upper thighs and the muscles down each side of my spine were very painful. I walked slowly, had problems doing the slightest thing, and was weak as a kitten.

    On Dec 27 my doctor took me off of work for the full week. Blood work was done and she suspected strep throat. Was given antibiotics and Prednisone. I had fluid on my ears (chronic for me) and such pain in my muscles. She also thought I was having residual mono symptoms. Since I am a mental health therapist, she knew I had a stressful job and needed bed rest for the rest of the week.

    The following week I felt better, though still suffering from extreme tiredness, as usual. Sleep wasn't going well and I begin noticing that brain fog was just as bad as it was when I had mono. I lose words.... I have to point, describe, anything to find the right word I want.

    Blood work came back with an ANA of 1:640 and SED of 22/20.
    Normal tests were uric, CBC, RA, strep and Creatin protein.

    She Rx'd anti-inflammatory meds, muscle relaxers and a mild pain medication to take prior to bedtime. I was given a referral to a rhemy.

    In January, the rheumy does the same blood tests. She stated she didn't think I had arthritis, Lupus or anything... said we would see what the tests showed.

    Last week I returned for my results at visit #2. My ANA was up to 1:1280 and SED was 22/20 once again. Other tests, including CPK was all okay.

    This time she says she doesn't think there is anything wrong. "We see high ANA's all the time and there could be nothing wrong. Someone in your family history may have had Lupus."

    I am suppose to continue taking my meds, do 12 weeks of aquatic therapy and go back in 8 weeks. She said she thought my muscles were tensed and I was fatigued because I was sedentary and when I try to do something, I tire easily, telling me it is a vicious cycle.

    I am not happy with this at all. The ONLY thing I got out of the appt was she said I had arthritis in my knees. Other than that I tried to explain that I was NOT sedentary, that I worked, had 2 step children and I do MOVE. I just do not exercise because of muscle pain. I have 2-4 good days then 2-4 bad days. No answer as to why my ANA doubled!

    I have went to part time as of last week because I was unable to work all week, as I would end up in bed the entire weekend, just to be halfway okay to go back in the following week. I had missed 8 days in 6 weeks because of fatigue and pain.

    My husband, a physician (a psychiatrist) asked the doctor if she suspected fibromyalgia. The doctor almost had a heart attack, it seemed. She announced that it was NOT fibro, though she had not done anything to discount any symptoms of it.

    Other than being concerned about my joints, my muscles seem to be a lack of her concern. Going back in 8 weeks, with NO further tests, just aquatic therapy, seems odd.

    Okay, y'all give me some pointers, tips and personal advice, please! Any suggestions on further questions for her, tests, anything!

    Oh, and due to my insurance, I have to have a referral from my primary doc.
  2. krayon

    krayon New Member

    Just a BUMP :)

    Hope someone will give you some answers or input.



    Karen
    [This Message was Edited on 02/20/2006]
  3. Hope4Sofia

    Hope4Sofia New Member

    I'm so sorry for your struggle. How frustrating. You definitely don't sound well, whatever the diagnosis is.

    I want to tell you to find a different doc but it doesn't sound like that will be easy for you. Can you ask your PCP for a different referral?

    I don't know if you have fibro or not but it could be possible. It sounds like you're illness lingered.

    I wish I could give you more counsil but I am fairly new to this "ruling out" diagnostic process. I a have been diag by two docs with fibro but am still waiting for blood test results to rule out other contributing factors. Beyond that I haven't been to a neurologist or an endocrinologist. I'm kind of at the bottom of that mountain.

    I think you need a second opinion. I hope you find more answers. I know how frustrating this is. It's like we are detectives searching for clues to the mystery of ourselves.

    I wish the best for you.

    Sofia
  4. 69mach1

    69mach1 New Member

    neuorolgist as well....

    you hubby maybe on to something...and i hate to say this but sometimes md's get ticked when a patient even questions their dx....

    plug on and hugs to you,


    jodie and welcome to you
  5. marw

    marw New Member

    I do not know how to interpret blood work or tests, so I don't know what yours might mean. However, you sound so exactly like me in your description of your symtoms and their progression that I thought I should just mention that. You may not have Fibro, but I most assuredly do.

    I have not, however, ever had Mono.

    I would suggest another opinion from a doctor who specializes in Fibro. Other diseases will first have to be ruled out, of course, but then a good specialist can tell if you have this FMS. Tell your Primary that you want another opinion; he can refer you.

    Another thing that will help is just to start doing some of the things we do for Fibro, even if you don't have it. By this I mean, see if your Primary will also send you to a Physical Therapist, who can prescribe light exercise and the right ones. Or try to get lite exercise in water. Also using a heat pad, and taking hot showers or baths. Pace yourself so you do not get too tired. Fatigue is very hard on Fibro.

    Wishing you well. Let us know how you are doing.

    Margaret
  6. pemaw54

    pemaw54 New Member

    Ive never had mono but I know it can mess you up bad for a long time. All of the symptoms you spoke about are mine with Fibro. I started with a (sorry, Brain Fog) Oh yea, orthapedic who ran all kinds of xrays. He was the first to use the word Fibromyalgia. It all started in my childhood. Stayed sick with one thing after another for all of my life. No Immune system. Caught everything I came in contact with. In April of 2004 three things happened. My husband who is the love of my life was diagnosed with diabetes. He is so handsome and athletic. It broke my heart for him and I was sooo worried. Then, I had a 9 day migrane. Never had that happen before. At the same time, I had my first urinary tract infection that got so bad, I had to go to the hospital when I could nolonger pee. Then I hurt my back at work and it wouldnt get better. In july of that yr I was sent to a rheum.My sade rt was 64/20 So then they had to rule out everything else. It is fibro. They never could explain the sade rt. Its back to normal now.. The brain fog, the pain, the exhaustion. I have it all. I dont know if any of this helped. Sorry about the spelling. Cant think today. Again, welcome to the board. Someone is always on to help you or just listen. I had to quit my job that I loved in Oct of 2004. I was so alone until I found all of these friends!!! God bless

    Suzette