Not sure if I have CFS

Discussion in 'Fibromyalgia Main Forum' started by TFD, Nov 9, 2005.

  1. TFD

    TFD New Member

    Hello Everyone!

    I am new to the board but not new to the symptoms of CFS. I have been ill off and on for almost 10 years and was diagnosed last year with CFS and Hypothyroidism.

    After reading the hard time that others have with this terrible illness, I just don't think I have it. I am able to work full time, while others can't. I do have the muscle and joint pain..swelling and severe fatigue, drug intolerance, swelling, restless legs, swollen joints, slight fever. But after 8 to 9 hours sleep, then I am awake. Tired but awake. Most of the time I do well an function normally. However, a flare up will hit and I feel like I have the flu, slowing me down for about a week. Work is about all I can do though. I used to wake up and clean the house, mow the lawn and wash my car before 10 am on a Saturday. Now, I am limited to what I can do. My question is this...

    How many of you have chronic sinusitis or allergies. From what I read, many times there is a misdiagnosis for CFS when it is sinus problems.

    My PCP is wonderful and he has been my Dr. for 15 years..but I can't help but think he has diagnosed me incorrectly since my symptoms are not nearly as bad as so many people. I am 45 years old and feel like I am 65.

    I appreciate any thoughts on this.
  2. dunnlb

    dunnlb New Member

    Chronic fatigue/fibromyalgia comes in all forms; some can work with it, some can't.

    But, I don't think that a low grade fever is a symptom of chronic fatigue or fibromyalgia, though. Have you been tested for lupus? Fever can be a symptom of lupus along with all your other symptoms.

    Cymbalta has made a big difference in my pain. I still have flare ups but usually weather related. It has especially helped with the everyday pain in my lower legs.


    [This Message was Edited on 11/09/2005]
  3. TFD

    TFD New Member

    Cymbalta? Is that an herb or prescription? I would be interested in trying anything. My PCP is not big on precription pain meds so I use alot of Advil and other over the counter meds which only take the edge off. I also forgot to mention that when I do have a flare up...my skin feels like it is sun burned. Also, I just got new blood work back which came back that I do not have Lupus.

    Thanks for the response!!!

    Tammie
  4. LittleBluestem

    LittleBluestem New Member

    I worked for over a decade after developing what I am now fairly sure is CFS. I have mild allergies, but am able to avoid sinusitis. Allergies are common with CFS due to the disregulated immune system.

    I suggest you treat as if you had CFS and see if it does any good. If you do have CFS, you will probably get worse unless you do something about it.
  5. Rosiebud

    Rosiebud New Member

    14 years before becoming incapacitated by CFS, I now have fibro.

    I'm not saying this will happen to you, I didnt know I had it, I was told I had a mystery illness and post viral infection and nothing could be done. They were right there but if I had been told it was M.E./CFS then I might have slowed down and done things differently.

    You know that you have it, you know to pace yourself - there are all different levels of CFS and Fibro - I am now severe. I hope that you pace yourself, you know your limitations, you can work but you cant do all the other jobs you used to.

    Take care of yourself, your symptoms sound bad enough to me.

    love Rosie
  6. suzetal

    suzetal New Member

    It is an antidepressant.It works for my pain with neuontrin .I take 90mg of cymbalta and 1800mg of neuontrin a day.

    They have taken the edge off my pain.It has not gone away but I can function a little more.

    I do have my flares were nothing helps.Oh well I live with this until they find a cure.

    I no longer work.I cant.Wish I could .I miss it and am totally board staying home and not doing anything.

    Sue
  7. karatelady52

    karatelady52 New Member

    I'm 53 years old and wasted many years trying to get a FM/CFS diagnoses. Remember these illnesses are syndromes of something going on inside of you.

    I began going to the Fibromyalgia and Fatigue Center. They will do comprehensive blood work to find out if you have viruses, metal toxins, lyme disease, mycoplasma. All of these can be root causes of FM/CFS.

    Now I'm being treated for lyme disease (which can mimic MS, Lupus, FM, CFS, ALS and many neurological symptoms) plus I have 3 viruses that are active in me.

    That's why I've been so tired all my life. I've raised kids, taken karate classes and it wasn't until I hit menopause that it really started to affect me.

    Thankfully, I kept hearing about the FFC and decided to give it a try. They are about the only doctors who are looking into the root causes of FM/CFS.

    Sandy


  8. karatelady52

    karatelady52 New Member

    If you do a search under Mikie's name, she's doing a lot of the same things through her own doctor that they do at the FFC's.

    Sandy
  9. greatgran

    greatgran Member

    I have been ill for five years. The first 2 years I was dx with anxiety/depression but I knew something was wrong with my body..I did continue to work even though it was rough..

    Finally, I said I can't take it anymore I have got to know what is wrong with me..Its true I do suffer with anxiety/depressiion and never had allergies or sinus problems before the cfids..

    To make this short, after many doctors, test and them still not knowing for sure.
    A internist/rhumy final said cfids and to this day I am still not sure..

    I am no longer able to work and like you said I use to be able to clean house, shop cook and work..Now I am mostly housbound because when I go and do I pay..I feel if I had been dx right away and began resting and pacing etc..I wouldn't be as bad as I am today..

    As far as sleep I do not sleep very well..I do become totaly exhausted and have to lie down a lot..I never run a fever mine is always below normal even when I am sick..

    My flares seem to be with sinus instead of the sore throat..I may have a good week every now and then and be out of bed but when flaring I am in bed a lot..

    I am older so I feel this is one reason my condition has worsened..

    This is a strange illnes and one that is hard to accept, at least for me..

    It could be your thyroid, I sure hope it isn't cfis if it is please take care now...

    greatgran
  10. SoxFan

    SoxFan New Member

    You have many of the symtoms identified by the CDC as CFIDS. As previously posted, there are many degrees of this illness. Just because you are still able to work doesn't mean you don't have CFIDS. It seems as though your lifestyle and activity level have been significantly affected.

    Also, I think the low grade fever is definitely a symptom of CFIDS. I have a constant low grade fever myself. I ran a post a few weeks ago polling other CFIDS patients, and many of them also reported the low grade fever.
  11. upnorth

    upnorth New Member

    Your symptoms do sound familiar to CFS and to mine - which I have be diagnosed by 3 different Dr. as having CFS.

    It's true, I think that different people are able to function at different levels.

    I have a friend with M.E. in Britain and she has worked or gone to school full time since getting sick 15yrs ago in high-school.(she only twice was seriously functionally impared for a few months - when she first got sick, and during grad school) THe M.E. does still affect her, but not enough that she is disabled. She lives with modifications. For instance, she tried to complete teacher's college and relapsed - tryed again and relapsed again. She has to do a low key job (full-time), but still socializes etc.

    My Dr. was very persistant that I DO LESS than I feel up do in order to give my body some energy to heal, as well, she thinks using every last bit of energy trying to "carry-on" may affect my chance of recovering.

    The first two years I was sick I tried multiple times to return to work (part-time) and would succeed for about 3 weeks, slowly getting worse and worse until I had to quit.

    As to the siunitis and allergies. My specialist says many if not most of her patients suffer allergies. She thinks this is most likely CAUSED by the CFS and not the other way around. (however, we still don't know fully what causes CFS so anything is possible - it could also be different for different people)

    I had NO allegies before CFS and now I'm allergic to lots of foods, dust, mold, ragweed, grass as well as pretty much every pharmaceudical I've tried since being ill. I see an allergist

    There is a white blood cell called a T surpressor cell that can be low with CFS patients. T surpressor cells repress immune response so if you have only a few of them my understanding is that your body's immune system reacts to all sorts of things. Maybe your Dr. would check this?

    Hope this helps
    Upnorth
  12. beth0818

    beth0818 New Member

    i am able to work full time as well. a lot of people here are a lot worse off than i am but it encourages me to know that if they can make it....so can i. i am tired all the time but only get dibilitating exhaustion maybe once a month or less. i have constant aches and pains, horrible allergies, horrible sleep....
  13. Theresa03

    Theresa03 New Member

    I am only 25, diagnosed with FM and work full-time, am a full-time grad student, trying to plan a wedding and so on. There are days where I can't get out of bed and move.....but for the most part I am learning to control my stress level as that really affects my flares. Going to the gym really helps so far and keeping a positive attitude (it'shard though). I took myself off all meds and feel much better since. Yeah, I'm stiff every morning and in pain every day but I try to keep going on. Good luck....it affects us all differently.