1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Is it Not Possible for a Person with Chronic Fatigue to have Fibromyalgia?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Mya Symons, Aug 13, 2010.

  1. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    5
    NorthEastern USA
    It is all such a mess....... confusing.

    What I know:

    Thirty years ago, I was diagnosed with fibromyalgia.

    During that time, I was extremely tired..... and did rest a lot taking SCHEDULED afternoon naps. Also during that time, I had episodes of what cannot be described by the word "exhaustion." If I were a computer, it would be similiar to being disconnected from the power source. For example on one occasion, I can remember making my way from the parking lot to the soccer field to watch my son's game and realizing, I was not going to make with an overwhelming sence of having nothing to keep me walking....I had to drop to the ground and rest awhile.

    This never developed into being bedbound as so many on this forum. But I feel it very easily could have delveloped into a long term problem. This is how I can believe those who say they cannot stand..... I felt it or something very similar.

    Those episodes did get better (not the fibro pain though and other FMS stuff) ...... but now am suffering more tiredness, exhaustion, with a smidgeon of that "disconnected feeling" of having NOTHING to draw from to be able to move limbs or even stand erect.

    How did I miss the bullet the first time, why did that problem not get worse?

    Because ONE of the things I did at that time was to take scheduled naps, I am trying to allow myself that pleasure again. And I am tweaking my immune system AGAIN..... it is a full time job. And it is hard with a dynsfunctional mind. :ashamed: Alas, if it were that simple, the folks here would be better also.

    Hopefully we will have some good news soon...........until then,

    the beat goes on. June
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,110
    Likes:
    950
    Concord, NH
    Oh great something else I have to look forward to, Interstitial Cystitis. Whatever that is!?

    CFS Sept 2005, Fibro Oct 2008, IC...?
     
  3. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    131
    Melbourne, Australia
    You're not kidding when you say it's a full time job, June.

    When working full-time, that's all I did - work - I didn't exist outside the office. (in fact, half the time I didn't "exist" inside the office - but that's another story).

    Now, it's a full time job where I do almost nothing but focus on myself. But not working full-time means I'm no longer exhausted all the time. So as part of focusing on just me, I'm actually getting out & about with lots of slow walking & have taken up a hobby or two.

    If I every had to use my left brain for hours, or was put under stress again, I have no doubt I would collapse in a heap.

    Gosh, setting the alarm one day because I had to get up early for something was enough to keep me awake most of the night worrying I'd miss the alarm a few weeks ago. And the lack of restful sleep that night was enough to make me exhausted & dopey the next day. I couldn't think straight at all. (Lack of restful sleep was a major contributer to my health downfall).

    I am much better now, mainly, because I have the freedom to look after myself & spend time using mainly my right brain creative side (which suits my temperament & talents). I don't get stressed being creative.

    I really DO believe FM & CFS overlap with symptoms.
     
  4. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    5
    NorthEastern USA
    Oh, yes, and probably etiology..... It will be interesting when all the dust settles around the retroviral studies. Maybe it was the one/two punch..... maybe it was the time inbetween the first and second punch (onslaught of viruses) that made the difference.... well, again we will have to wait for the dust to settle.

    I am trying NOT to focus my time on CONTEMPT for those involved in sweeping this thing under the rug for SO MANY YEARS.

    Every minute I focus on them....... I am not filling up those minutes on happy productive thoughts.

    I am 65. What will the treatment be???? I have had this over 30 years, will it take me 10 years to feel better on treatments? And will I feel worse before feeling better? Would it be worth it???? Geeezzzz, life begins at 75????

    This is not going to be easy.... but..... we can share here..... help each other along..... we are entitled to our outrage, there is no denying that. I have worked hard at not allowing this illness to define me. Now I don't want my outrage to define me.

    We have so many unanswered questions, those who are iill not testing postitive, maybe that will change also.... I am rambling,

    What I am grafteful for is this community. Focus on that for now.

    Fondly, June
     
  5. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    41
    Scotland
    I was diagnosed with ME in the days before CFS was invented. It is myalgic because the pain patients experienced was often intense, in joints as well as muscles. Fatigue was often present but was not defining, in the same way fatigue is present in MS but we think of it as neurological.

    I have always had bad general pain but also pain that comes when I use part of the body, for instance, writing a few lines will give me teeth clenching pain in my fingers and finger joints.

    When CFS came along, pain was a much smaller component and I think doctors diagnosed concurrent fibromyalgia to account for the patient's pain.

    I read a lot of the studies on fibro in those days, and stretching and gentle exercise helped people which was directly opposite to ME.

    As time has passed, I think the boundaries are so blurred ad confused it is impossible to tell with the current definitions who actually has fibromyalgia. Some doctors seem to diagnose it referentially because patients are better treated.

    Getting worse with exercise is the cardinal symptom of ME but that was ignored in the US until very recently.

    My own view is that the two illnesses are different and proper research would[IMAGE][/IMAGE] sort it out, even if both are different types of neuroimmune diseases.

    Mithriel
     
  6. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    i think they are the same basically, i was diagnosed with fibro but i no longer have much pain - i exercised it away. but now i feel mainly fatigue. & dizziness, more foggy, more the CFS type stuff - but i can still exercise so??? you know, you tell me. i have no idea what to call it (i believe in one thread we decided on WTF - still my fave! haha!)
    whatever it is i have it.
     

See more popular forum discussions.

Share This Page