FM/CFS Progressive?

Discussion in 'Fibromyalgia Main Forum' started by wendysj, Feb 28, 2009.

  1. wendysj

    wendysj New Member

    Hi All!

    I have been posting quite a bit lately... I'm just trying to get some things straight in my head.

    Do any of you know if FM/CFS is progressive? My doctor doesn't think so and I'm pretty sure that is the kind of answer I'm going to get. The "thinks" and "believes" because no one really knows... no one even KNOWS what causes it.

    Basically, I'm asking the people who have had this dd for a long time. In your experience, does the fatigue/pain get more intense or more widespread the longer you have this dd?

    Thanks for your replies.
  2. ladybugmandy

    ladybugmandy Member

    i think the disease can plateau for a long time but, if i had to guess, from my research, i would say that it will eventually progress in most cases.
  3. dragon06

    dragon06 New Member

    It is progressive. I have had this my whole life (since I was 3) and it has steadily progressed through that whole time. My mother also has FM and it has been progressive for her too. Most people I talk to say that it is progressive in some way for them. It's not necessarily always a fast progression and there can be plateaus for certain amounts of time but it definitely, without a doubt, is progressive.
  4. wendysj

    wendysj New Member

    In my experience, the severe fatigue lasted for one solid year. Then, it would get better for a while, then return.

    In the past year, the joint pain and muscle pain have become much worse. I didn't even have the joint pain until 2008! I hate it that I'm only 28 and know this will be getting worse the older I get.

    I will continue to excercise and get as much quality sleep as possible.

    Thanks for your replies.
  5. 3gs

    3gs New Member

    Inspite of docs opion yes it is progessive.

    I have had this for over 50 yrs(now that I have info). My dad definately had it and I feel after research it greatly contributed to his death. He went untreated-mistreated to the point of no return.

    This last 2 yrs I have gone way down hill. Pain worse,weakness,brainfog. Have now become pretty much housebound.
  6. wendysj

    wendysj New Member

    I'm so sorry that you have not been doing well... It's truly something that we have to deal with 24 hours a day. You will be in my thoughts.

    It's so sad that your father went untreated and mistreated. I believe my grandmother had this issue as well. She always said she was in pain, but no one really believed her. She passed away last year. It helps to know they are no longer in constant pain.

  7. 3gs

    3gs New Member

    Thank you Wendy.

    My dad passed away last year too. So sorry to hear about your grandmother. It's not always old age!

    Take care
  8. In my case YES it was flu like , aching muscles, tired,
    now nothing touches the nerve pain. JMO it has progressed and worsened.
    [This Message was Edited on 03/01/2009]
  9. vivian53

    vivian53 Member

    I had never heard that this DD was progressive. That is really bad news. I was under the assumption that it stayed pretty much the same except for flares and remissions. My doctor told me upon my receiving my diagnosis (and in an almost joking manner), "you'll have it all your life, but at least it won't kill you." Real funny huh? I didn't laugh.

  10. wendysj

    wendysj New Member

    Hi Vivian!

    Yeah, doctors can try to lighten the mood at the wrong times. Sometimes it feels like it "kills" my life because I can't do anything else. :( But that isn't all the time.

    Don't get too upset about this dd being progressive. It is debated all the time. I just wanted to get some "real life" answers about it being progressive.

  11. Daisys

    Daisys Member

    I had severe fatigue after a long lasting flu in 1978. It gradually got better, and I got back to about 90% of my normal. It was later diagnosed as CFS. I had a few years of "normal" life, but did have limited energy.

    After a physical trauma in the mid 80s, I had a relapse, and besides severe fatigue, I had insomnia and muscle pain which was diagnosed as FM. Over the years, my condition waxed and waned--some years were better than others, but it never really went away.

    Then I went thru menopause, and really started to go downhill. I happened to go to a lyme literate doctor, and he recognised that I have lyme disease. Treatment has improved my life tremendously. It may have been lyme disease all along--who knows? So little research has been done for all of these illnesses.

    CFS and FM are syndromes, which means nobody knows what causes them. They are descriptivie of certain sets of symptoms. So, I have CFS and FM, but the underlying cause for me is probably lyme disease, which is definitely progressive.
  12. TigerLilea

    TigerLilea Active Member

    Hi Wendy - This is not what you want to hear, however, for myself, yes, it definitely has gotten worse over the years. I have had CFS now for eighteen years, and I have not had any sign of relief from the symptoms over the years. The post exertional malaise is now at the worst it has ever been. I used to be able to do 30 to 40 minutes on my treadmill a couple of times per week, however, now I am lucky if I can do 20 minutes once per week.

    The doctor who originally diagnosed me told me that if a person has CFS for more than two years, it is because they don't want to get better!! Gotta love doctors, don't you!!!!!

    Take care.
  13. TigerLilea

    TigerLilea Active Member

    Hi NoFool - If CFS is reversible, then I assume that this has been your experience. Could you please tell us "exactly" what we need to do in order to "reverse" our symptoms.

    For myself, my CFS has gotten worse over the years. That is not a belief system, that is just plain fact.

    I have to question "Do you even have CFS"????????? I used to believe that you did, however, after this comment, it seems likely that you don't.
  14. ladybugmandy

    ladybugmandy Member

    there was a great doctor in toronto, dr. sherkey. i had never gone to him but found out he passed away not too long ago of a brain tumor. he had suffered from CFS for 30 years i think. i heard that he was in favor of dr. goldstein's protocol.

    i don't know much about this protocol but i am of the opinion that, with the appropriate testing and antimicrobials, you can not not only halt disease progression but improve. this is especially true if your illness had a flu-like onset.

  15. bakeman

    bakeman New Member

    at least 3 distinct illnesses and up to 8. its very possible some may improve or recover. i have read many partial recovery stories over the years.
  16. Forebearance

    Forebearance Member

    Hi wendy!

    Well, I can think of some cases where CFS or FM could be progressive.

    In my case, my CFS is caused by mold toxin, and I happened to move away from the moldy place, so I was gradually getting better for years. Then my new home had a water leak, grew toxic mold, and I began going downhill. I moved out, and now I'm going uphill again!

    So I think that if a person's CFS or FM is caused by untreated Lyme disease or if a person's CFS or FM is caused by mold toxins and the person is still living in the moldy place, then it will be progressive.

  17. wendysj

    wendysj New Member

    Hi Daisys!

    I can relate with the menopause. I'm 28 but I had a hysterectomy last year. The joint pain really got much worse. I still think I did the right thing though.

    I'm sorry about the Lyme Disease being progressive. My CFS started out after a nasty Mono fight. I'll continue fighting it with all my strength.

    Thanks for your reply.
  18. wendysj

    wendysj New Member

    Hi Nofool,

    Thank you for your reply... It is optimistic and we all need to hear something optimistic!

    I'm not interested in debating the issue. I thought I made that clear. I just wanted to hear from some FM/CFSer's here on the message board telling me what their experience has been. For some, it has been "definitely progressive".

    Thank you for your reply.

  19. maps1

    maps1 Member

    I know that I have been getting progressively worse especially in the last year I have not experienced even a remotely normal hour.

    Now i am not sure that the progression is caused by cfs but am feeling that maybe with our bodies low we are prone to all the little infections and viruses that are going. Also a lot of us try some very severe medication, me included and it has made me wonder if the body has got kind of lost.

    I am now two months in to being treated by naturapathic doc, using homepathic remedys and accupunture. The idea is to clean out the liver, spleen, gallbladder, kidney and then to start on the candida, fungus etc. She is going very slow and have asked to speed it up.

    It is too early to tell but some of the symptoms are gone ie, constant night sweats, chills, am now able to generate some body heat so i am sticking to this until spring and will re-assess at that time.

  20. SnooZQ

    SnooZQ New Member

    Insofar as the "cause/s" of these diseases are still not widely recognized in current clinical practice ... if the triggers & causes are not dealt with, then likely there will be disease progression.

    Currently accepted medical treatment is primarily symptomatic.

    Of those who have made progress in disease reduction/remission, generally there has been an attempt to treat a root cause. For quite a number of sufferers, hormonal imbalance is a contributor to fatigue, muscle pain and muscle deterioration. If hormonal imbalance is left untreated, symptomology progresses. If treated, disease improves.

    Similarly, for those whose symptoms result from reaction to toxins in food or environment, incl mold, making the necessary changes and/or avoidances can yield improvement. Continued exposure may have the opposite effect, long term.

    For those whose symptoms result from invasions of parasites, yeast, virus or bacteria -- ditto. Find the cause, treat it adequately, and often there is improvement.

    IME, an holistic approach to these diseases is more frequently successful in the long run than the current medical-clinical approach. Because one will test & search out possible contributors, then treat them -- but the other will simply treat symptoms with medications that may be effective in the short term, but which often in the long term come to the end of their helpfulness.

    It is my hope that some day soon, medical practitioners will take themselves off the payroll of big pharma and come round to more concern with our biochemical uniquenesses, and how that predisposes us to symptom sets called CFS and Fibromyalgia. We have all manner genetic and metabolic testing coming round the corner, and that will likely be very instructive.

    So hang in there, folks. Best wishes.

    P.S. For the record -- I rarely use my walker or cane anymore. I am one who has experienced considerable healing by way of pinpointing triggers and causative factors in my fibromyalgia.