Kind of alone on this...your input is extremely appreciated!!!

Discussion in 'Fibromyalgia Main Forum' started by Keja, Oct 28, 2002.

  1. Keja

    Keja New Member

    Hi! I do not know of anyone around me with CFS or FM, as a matter of fact my doc is not all that familiar with it...so I kind of rely on everyone here for info and support.
    I've been tested peiodically for 2 1/2 years now for Lupus. This is due to my "sed rates" being so high. They were 1st noted at 30 and have jumped to 74. Has anyone else had this happen? Is it common with CFS and FM? Any input would be greatly appreciated! Thanks! Kathy
  2. Keja

    Keja New Member

    Hi! I do not know of anyone around me with CFS or FM, as a matter of fact my doc is not all that familiar with it...so I kind of rely on everyone here for info and support.
    I've been tested peiodically for 2 1/2 years now for Lupus. This is due to my "sed rates" being so high. They were 1st noted at 30 and have jumped to 74. Has anyone else had this happen? Is it common with CFS and FM? Any input would be greatly appreciated! Thanks! Kathy
  3. Sandyz

    Sandyz New Member

    Nice to meet you. You`ll find lots of support here.
    You and I have the same mystery. My sed rate is usually in the 70`s also. Mines been that high for over 10 years. I`ve had short periods were it s dropped down to 40 but it always shoots back up there. The doctors can`t figure out what`s causing it. At first they thought I had Lupus or RA
    but after all this time none of that has showed up on the tests.
    Almost all the doctors I`ve been to say Fm doesn`t cause a high sed or inflamation. It seems some people here have high sed rates and some peoples are very, very low.
    I`ve noticed when it goes down I feel a lot better.
    I sure would like to know what`s doing it to but I am comforted by the fact that after 10 years of it being high, I still am fine except for the Fm.
  4. allhart

    allhart New Member

    dont know the answer to your ? but wanted to say hi anyway!have you tried finding a fm/cfs dr near you?

    kara
  5. JP

    JP New Member

    Hello Kathy,

    My SED is positive too. Have you had an ANA blood test? My doc is following my ANA and SED right now. My ANA is positive for Lupus and some other autoimmune conditions. However, he is only clear on FMS and Hashimoto's (autoimmune thyroid disease) at this time.

    It takes time to dx a number of autoimmune diseases. I think there are over 80 identified diseases with different and common symptoms. Journal your symptoms (if you are not already). You may also want to do a bit of research and request labs that may point you in the right direction. It's a long road at times.

    I am more interested in prevention for now...how do I stop the avalanche of accumulating autoimmune conditions in my body? That's another post for sure...

    Be well,
    Jan
  6. tedebear

    tedebear New Member

    Had so many tests. Not familiar with the ANA. Is it a blood test? Help. Ms. Naive here.
    Thanks. Soft hugs.
  7. JP

    JP New Member

    An ANA is an anit-nuclear antibody test.

    It is a blood test that can be a helpful step in determining many types of autoimmune disease. The ANA is further classified by the appearance of the cells. It is a fairly important test in my opinion and it is not conclusive by any means.

    With a positive ANA, it leads you to more tests. If your test is positive and your symptoms align, there is a pretty good chance that you have some type of autoimmune disease. Again, a positive ANA is just a step on the path to discovery.

    You may need to ask for the test, as our primary doctors are maxed to the limit these days and fighting to stay in practice. You know-we need to advocate for ourselves. My primary doc requested this lab, along with others. I had been having fevers and other strange symptoms for years before I even told my doc. I just thought I was burning the candle too long too hard...didn't think I had an illness causing the fevers and symptoms.

    Anyway, I hope this is helpful.
    Take care,
    Jan
  8. tedebear

    tedebear New Member

    Thanks. I'll ask the docs about it.
    Soft hugs.
  9. Keja

    Keja New Member

    Thanks you for all the responses! It really helps to get other peoples input and suggestions. It especially helps to know that you are not alone!!! Peace & Hugs to all of you! Kathy
  10. dlizard

    dlizard New Member

    there are maybe a handful of doctors out there even intrested in our disease.... and it has been classified as a syndrome for only about what 10 yrs or so.... I've had positive ANA's and high sed rates off and on for 25 yrs now... got all the symptoms of lupus and was diagnosed with it back in the 80's... this year my ANA went negative and I was told I DO NOT have lupus....*duh* and I have fibromyalgia.... when I read the list of symptoms.... BINGO* .... so I think over the next years that this old planet spins, the medical community will agree on what labs are indictive of fibro and which labs slide around and all of this will mean something to someone one day! Good luck!
  11. sofy

    sofy New Member

    A hi sed rate is the only testing indicator for Polymyalgia Rheumatica. It is an auto immune problem in the arthritis family and those having it are often thought to have lupus first among other arthritic problems. I had it and it can be treated. It took 2 years and the treatment was steroids but it whipped the bugger. At that point I would have swallowed drano if they said it would fix me. I went to lots of MD and no one knew what was wrong with me. I was 48 and it usually shows itself in women in their late 60's and older. I finally went to a Rheumy. at a very large teaching hospital (Lahey Clinic in Boston) and he looked at me in 5 minutes knew what was wrong with me. I love that man to this day, but he has moved on. I had a pretty severe case. I weighed about 105 and 5' 4" and could not touch my knees. Every tendon seemed to have lost its elesticity and I was almost frozen. Couldn't get in the bathtub or lots of other simple motions. Went on maga doses of nasids and moderate prednisone and felt so much better in 2 days and then a gradual return to health. Prednisone is a wonder but a beast too. Kills off your bone building ability and you have never known hunger till your've been on that stuff. I didn't gain weight but only because I had super will power and just didn't eat more than the alloted portion. I've done it again, on and on she goes