Same DD but We Are All so Different, WHY?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Apr 7, 2007.

  1. greatgran

    greatgran Member

    As I read post on our complaints, treatments etc..I wonder if we have the same DD why are we so different.

    I know we are all made differently but with most diseases the symptoms, complaints are somewhat similar..and so is the treatment.

    I too think that CFS and Fibro are two different diseases.

    I have been Dx with CFS but doubt my Dx so often..My symptoms are blurred vision, fatigue, body aches to the bones sometimes in certain areas and sometimes all over, anxiety, depression, low oxygen levels, can't sleep, but so tired and sleepy..Never being able to plan anything and on and on.

    Haven't been on a vacation in years, afraid to go, spend money and be in a crash or whatever happens to me..

    Nothing I have tried seems to work so trying to accept and live with it but there are days when it is so hard to do.

    Then I will have a few good days and think, hey, maybe I am in remission only to get my hopes up and then here it comes again.

    Guess I am just venting but would like to hear some of your symptoms and complaints ..

    Thanks,
    greatgran
  2. greatgran

    greatgran Member

    Very well said..
  3. cct

    cct Member

    Greatgran,

    A few years ago, while I was attending a lecture that was being given by a leading CFS/FM doctor, I learned that the human body has a limited number of responses.

    Dr. Gantz informed us that is one reason why it is so difficult to determine a diagnosis without a definative lab test.

    Many diseases have the same symptoms (fever, achyness, fatigue, etc.). ME/CFS/FM symptoms are all similar. Many other diseases have the same symptoms as well.
  4. obrnlc

    obrnlc New Member

    hi great gran,
    totally agree, and i, too, often wonder if this is what i have,til i get on here and find the most bizarre symptom i have and never told anyone about--and 15 people are posting on it as if i wrote them all!
    other times, tho, i hear (read?) people talking of a "flare" and it seems i never have good days but most all days are exactly the same, so i wonder.
    then when i am ready for acceptance, see a doc that comes up with new ideas and i start the process all over agin!
    i really hate when people ask how i am, i know they mean well, but i just want to scream--"dammit, read the book" since it would take 3 days to tell them anything specific and so often when i say "the same", they wait for details, but if you say "fine" and try to change the subject, then it's "oh are you back to work then?
    very exasparating (sp?), this DD!
    Happy Easter--L
  5. greatgran

    greatgran Member

    Yes, I will be in charge of reading every complaint..Not that I can do a darn thing about them but sympathize, understand and probably relate to most of the symptoms..

    God Bless All,
    greatgran


    [This Message was Edited on 04/08/2007]
  6. I hear you, I don't have alot of time, as I have company coming soon for Easter dinner. So much to do and praying I can do it all before I crash.

    But I know what you mean, you can't plan anything as you never know what you'll feel like that day. I rarely have good days anymore, but I keep hoping and trying to think positive.

    But I bet we are more alike than different with this dd. Too bad we can't all get together, heck we might be able to figure this out. I think we know and learn more here than the drs. do sometimes.

    I will be back later to post more on symptoms other than the number 1 PAIN !
  7. Didoe

    Didoe New Member

    If most of us had a real greatgran or a real family at our backs how much of the daily issues of surviving and dealing with fm/cfs might be less difficult.

    In what year did everyone decide that an ill family member was officially considered an outcast or inconvenience in the busyness of Life?

    maybe there's a reason some of us spend hours here.
    Its exhausting being alone, having fm'cfs and being a one man band keeping your mouth shut so you dont complain and upset the 'normal healthy' people around you.

    i better stop here because i feel a major vent coming on and this is already too much
  8. greatgran

    greatgran Member

    Fibrobutterfly, so glad you are able to have Easter Dinner, what are your crashes like? I am in one or something now and this is the first time in years I couldn't have my family in..

    I am staying in my room, feeling a lot of anxiety, aches and weird head feelings, just so hard to describe..

    Didhoe, know what you mean, my husband is sitting in the living room lost, my kids are calling about coming over and I had to tell them no..So now all I want to do is cry...I feel like such a failure, but today I just want to be left alone in my misery..Hate for anyone to see me feeling this way.

    Do you ever feel like its all mental and you are going insane..I am suppose to babysit tomorrow with the 2 greatgrans and already dreading it..and not sur I will be able to..Oh, well no more venting today..

    Thank you,
    greatgran
  9. Engel

    Engel New Member

    HAPPY EASTER

    I went ahead and cooked a small ham and some escalloped potatoes and green beans ... it turned out yummmmmmmmmmmy and I had my own dinner ... just me. I gave love kitty some ham bits. My son had "other" plans so fine. I am doing his laundry ... packing him a plate of leftovers ... and I am telling him to do his own laundry from now on. He treats me like crap so why should I do anything for him? It is especially painful for me to do laundry with the folding and lugging it up and down steps. He doesn't have time for me. He will not mow for me. He will not help me in any way unless there is $$ involved. Well I will use that money to pay someone else ;-) . I was going to boil some eggs but I am just too worn out. I felt really bad this morning like my legs were totally going out on me. Kinda scary. Oh well. I just hope if I do fall it takes me OUT all the way.
  10. Engel

    Engel New Member

    I have no one. I am rarely able to attend anything. Seating is a major problem ... odors (perfumes etc) make me ill ... noise is very hard to take. Driving has gotten almost impossible for me now. I am thinking about moving back to where I grew up so I would at least be able to call on a relative if I needed to. Couldn't they have brought dinner to you? I went ahead and fixed my own Easter dinner and I am watching the Jesus movie that is on. :) I am in incredible pain today. I hurt to the bone too (I am FM). Just typing this is excruciatingly painful. I am on tramadol (Ultram) and it just isn't helping at all. So that means calling DR tomorrow morning ... another trip there ($20 copay) and more $$$$$$$ for RX. Hey ... those co-pays add up fast!!! I am seeing a rheumy for the 1st time in 9 days. I just hope he can shed some light on all of this. I am also on the path to total disability :-( . I have vision problems ... blurred and hard to focus. I just got diagnosed with sleep apnea and am using a cpap now which helps some. I am chemical sensitive (perfumes/colognes about kill me). I hope to be moving soon to a rural area/small town. Less fumes and congestion. Take care!
  11. sweetpea48

    sweetpea48 New Member

    Greatgran, my niece has been dx with MS, and I've been dx with CFS, but we think we have the same thing, as my mother had some of the same symptoms, as did her mother and uncle. We don't know if I have MS, she has CFS, or if we both have neither! We are both stiff and sore all the time, both have the mental fog, foot pain, etc. She has worse eye problems than I do, though I have mild ones. In fact, it was her eye problems that got her diagnosed with MS.

    It's all such a puzzle, and so frustrating!
  12. Cromwell

    Cromwell New Member

    Like other dd's we all handle them and get them differently. Right now I am totally impacted with a virus that caused just a bad cold with the rest of the family. I have always felt that FM and CFS is immune related and I guess how we react is very much impacted by how much the immune system is impacted. Hope this helps.

    Annie
  13. greatgran

    greatgran Member

    Thanks to all that have replied , I plan to address each later, but today has been a one of my days in bed in fact yesterday was too...Weird head feelings, depression , achy to the bone and feel like I just want to cry and on and on.

    Yes, Elaine I get the mood thing but I want to be a happy person but have lost that with the DD..

    The family expected me to have Easter dinner, now they are lost and I feel guilty..So sure can relate to how you feel, seems like they only come around when they want something..but I love them and have to admit I am not a person many people would want to be around. cause as my great granddaughter said, "granny you never feel good".

    More later and thanks for your post,
    greatgran
  14. Engel

    Engel New Member

    Son said he did not hear me say I was fixing dinner today. That is because he tunes me out. So I sent the leftovers home with him when he came for his laundry.

    Don't you feel guilty. You are in pain and there is no reason why they can't bring dinner to you.

    (((((( hugs )))))))
  15. Lichu3

    Lichu3 New Member

    As many have posted in the past, both fibromyalgia and CFS are syndromes - collections of symptoms - and not diseases in the strict medical sense that we know what causes them.

    Unfortunately, the symptoms (fatigue, brain fog, pain, etc.) are not easily measured ones i.e. where scientists can easily detect the quality or intensity of symptoms.
    For example, many people with HHV-6A fit the criteria for CFS but not all people with CFS have HHV-6A infection. If science were able to say accurately measure brain fog, they might find the brain fog of HHV-6A to be different from say the brain fog of some other virus.

    I believe strongly that CFS probably consists of several yet-to-be-discovered diseases. Even within my own support group, everyone has a different story of CFS onset.
  16. Well I had everyone for Easter dinner. It had been awhile and OMG I was/am so totally exhausted. That's how it is with me, with fibro if I have any semblance of a good day I pay for wks later. My good days are farther and fewer between.

    The pain moves to different areas alot of time , but my main problems are my neck/shoulder areas lately radiating into the back of my head. Also sometimes my wrists, sometimes my butt/hip area. Those are the worst areas of pain.

    If I try to clean even a couple windows or overdue cleaning occasionally( I feel like I am dying my body hurts so bad. Sometimes I wonder if the drs are missing something serious. (not that fibro isn't serious)

    The drs never mentioned cfs but I am sure I have it also. Right now I am on lyrica, and so far it helps the most with pain, but still not enough.

    I hope this helps. I hope your feeling better too.
  17. marilynb

    marilynb New Member

    I know what you mean.

    We always have the kids & grandkids over for Easter. Usually plan an easter egg hunt for the grandkids.
    Not this year. Just wasn't up for it.

    My family has pretty much stopped coming around. My kids don't ask me to keep the grandkids anymore, because I have turned them down so many times.

    I know I will be remembered as the grammy who was always in bed & always taking medicine. I really hate that, but don't know what I can do about it.

    Take care,
    Marilyn
  18. cherylsue

    cherylsue Member

    See my post title "Dr. DeMeirleir CFS subsets." This may answer some of your questions.

    CherylSue