Anyone know if FM is Progressive...

Discussion in 'Fibromyalgia Main Forum' started by shan1078, Jan 31, 2006.

  1. shan1078

    shan1078 New Member

    I've been diagnosed with FM for about 3-4 months now. It seems to be getting worse. I have most of my pain in my right shoulder and neck area, now I have it on both sides.

    Does anyone know if FM gets worse with time. I know it doesen't usually go away...


    Could those of you who have had do deal with this longer give me any info?

    And does anyone know of a good Dr. in the Memphis, TN area?
    ALL INFO HELPS, thank you!!
  2. shan1078

    shan1078 New Member

    Thank you

    I was affraid of that. I'm constantly in pain, but I read some of these posts of other people, and how their crippled with severe pain, can hardly walk, and have to resort to stong pain meds. Since I'm only 27, I can't help but wonder if that is my future. Thanks for your response!

  3. shan1078

    shan1078 New Member

    Thanks for all of your support, it's nice to meet someone, so I don't feel so alone!
  4. snooker11

    snooker11 New Member

    yeah, that's a pretty depressing thought that it could be progressive. but, so is medicine, so hopefully if it does get worse there will be better treatments available.
  5. karatelady52

    karatelady52 New Member

    The problem with having a diagnosis like FM/CFS is you really don't know what the underlying causes are so how can you know if its progressive?

    I was diganosed with CFS/FM for 6 years (although I had been sick for over 30 years) and my doctor told me it wasn't progressive but I kept feeling worse and worse. She would then tell me to try not to be stressed, relax, get a massage, take sleep meds, etc.

    Finally, I went to the FFC where they took out half my blood (not really -- 23 vials) and I found out the cause of my pain and fatigue was lyme disease and because of the lyme I have 3 active viruses.

    So, yes, lyme can kill you if left untreated because it invades all areas of the body and mimics so many other diseases like MS, ALS, Lupus FM/CFS to name a few.

    Don't stop with a FM/CFS diagnosis but find a doctor who will test for bacteria, viruses and toxins.

    There are some really good discussions going on on Lymenet dot org. They are talking about toxins (especially mercury from amalgams) and how much toxins, parasites, bacteria and viruses can deplete the immune system.

    Here's an small excerpt from one of the posts by a well known doctor who spoke this at his last conference:

    “What I want you to come home with is, first of all, that all of us have a body that is not sterile inside, but it is an ecosystem, it is alive inside consisting of a combination of our own body cells that we got from our parents and farther out from their acquired organisms.

    The acquired organisms are a large group that is first of all --- anyone of us has 8-12 pounds of living material in the bowel. All of us agree on that one, even most conventional medical science have that. This is a very important part of our immune system – what’s in here. It is an estimated 12,000 different species of bugs, and the only ones that we ever named that you know are acidophilus and bifidus. That’s two out of 12,000 bugs. And yes, they are present in large amounts, but there is 11,998 other bugs in there. They have rarely been categorized and catalogued.

    Beyond that, we know that the tissues are not sterile either, but there is a constant motion of microbes through our tissues and the brain, in the body fluids, in the lymph system, in the lymph nodes, in the blood and everywhere. Some of these we have begun to name in the last 20 years, and Lyme Disease, mycoplasma, Chlamydia pneu, strep, staph, and all of you have coagulate negative staph in your sinuses and in your nose, in your mucus membranes, and they move freely into the brain; so there is a constant circulation. So all of these things are proven now -- that we are not sterile inside.

    What we also know is -- that when our matrix, our system inside, is increasingly polluted with man-made substances that were not intended to be there, it changes the living environment that favors some of these microbes. They now sort of sprout and grow larger colonies and start behaving in ways that are different than the way they were behaving before. Just like when you have a two-year old girl and give her a glass of wine to drink, she is going to start behaving differently – that angel that was there a moment ago, is not going to be such an angel the next moment.

    If you feed a Lyme spirochete that is very peacefully in your system, just sort of wanting to nab away your glucosaminoglycans from time to time, but otherwise have a pretty peaceful relationship with you. If you feed that spirochete suddenly with mercury and lead and solvents and phthalates ( plastics), it is going to start behaving in ways that it did not behave before. And things go out of balance that way. Dietrich Klinghardt, M.D., Ph.D.

    The rest of this is on Lymenet.org if you're interested.
    ----------------------------------------------

    Many doctors aren't trained to check for these bacteria, viruses and toxins that invade our bodies. So they give us a diagnosis like FM/CFS. You have to be aggressive about finding out what is wrong -- I knew it was more than just FM or CFS and wasn't going to stop until I found out the cause.

    Only then can we begin to fight these invaders, build up our immune systems and begin the healing process.

    Sandy
    [This Message was Edited on 01/31/2006]
  6. Terry383

    Terry383 New Member

    I have had it for 20 years and I cannot say it is progressive. It varies in intensity on and off yes, and it goes from one system in the body to another also.

    I had to wear a cervical collar for about 15 months and bam, one morning all the pain and stiffness was gone. Then it was in my joints for a while. I guess you get the idea.

    I am so much better now, at least 95%. Notice that eating certain food groups make me worse, a few other friends who have FM say the same thing. I eliminated all dairy and all nightshade vegetables. If I eat either I worsen within a few days.

    I also take a lot of vitamins.

    I found that rolling with the pain is much easier than fighting it, questioning it, guessing about it, wishing it away and so on and so on.

    I walk at least one hour a day and that is number one at all times (except when my formerly broken back acts up).

    It is doable to be not only better but lots better, attitude and perseverance, and move it baby even if you don't feel like it.
  7. hugs4evry1

    hugs4evry1 New Member

    Since I truly believe this journey started with my Toxic Shock Syndrome when I was 18.

    Had days in my 20's when I couldn't move, too tired and bloodwork was fine.

    In my 30's it progressed to days in bed, then sometimes it was a week. Just needed to rest. Nothing I could do and no answers from the docs. And an amazing array of new physical problems were added.

    Now in my 40's I've had two horrible "flares" the first one was 9 months long. I went to take a nap on Mother's Day after lunch out and didn't make it downstairs for 9 months. (Although I had 44 stairs to get down to my living room and that may have had something to do with it)

    This second flare started in July 2004 (yep, 18 months) and I still don't know when it will end although I've also added hypothyroid disorder to the fun. I know that's kept me sicker longer.

    I seriously doubt any docs have kept patients long enough to know if it's progressive or not. But I do know that having an auto immune disorder means you're likely to get another one. They're looking at CFIDS as auto immune, mentioning Fibro as possible too.

    And I clearly remember being at the doc's at 19 when my son was a baby and describing my legs going out, weakness and fatigue and he did a thorough exam including looking at my nails for a long time and he told me to have a test for Lupus each year no matter where I was. (Military wife)

    None of this means that you have nothing to look forward to. I've had a wonderful life, lived in very interesting places and had many wonderful years in between these flares. I know I'll feel better again and I'm looking forward to it.

    Nancy B.