I might have CFS...

Discussion in 'Fibromyalgia Main Forum' started by kukla, May 3, 2003.

  1. kukla

    kukla New Member

    I went to my GP and was told a few days ago that I am most likey suffering from CFS. It's drving me insane, because I don't know if it's definate or not, i can't concentrate and feeling tired all the time. I basically have all the symptoms of CFS. Is there anything to cure CFS? Basically every symptom I've had leads to CFS, including the tiredness, headaches, migranes, aches and pains in my joints, cannot concentrate, some depression, some anxiety...etc.
  2. Shirl

    Shirl New Member

    Hi Kukla, welcome to the board. So sorry you are having problems being diagnosed. But these illnesses are hard to address by the doctors or anyone else for that matter.

    HOpefully you will learn a little about CFS here on the board. We have many members with CFS and FM.

    They will be glad to share with you.

    AGain, welcome to the board, and I do hope you have something that can be cured.

    Shalom, Shirl
  3. andreae

    andreae New Member

    Sometimes it is a relief to at least know there is something "really" wrong with us, then we come to realize there isnt' really anthing anyone, especially drs, can offer us for relief.

    There are several things I learned over the years. The first Stress is your WORST enemy, you have to learn to take very, very good care of yourself.
    Second, often people with CFS/FM have food and chemical sensitivities. So watch for those
    Third everyone is so different what might work for one person may not work for another
    Fourth don't give up Keep trying, find a good dr. Look to alternive medicine as a resource, do as much research as you can

    Transfer factor and Vitalaxin have helped me more than anything, but I had to try a million and one things before I found it. So just don't give up! (See my Vitalaxin post)

    You've found a great resource on this site.

    Sorry for you DX
  4. Mikie

    Mikie Moderator

    The bad news is that I believe that CFIDS is more debilitating than FMS, but the good news is that there are more treatments for it depending on what is triggering it. About the only effective long-term treatment for FMS is the Guai.

    With CFIDS, I have found Klonopin (which is also great for FMS) to be a miracle drug. My illnesses were triggered by mycoplasma infection, so I am on the Doxycycline treatment.

    I recently discovered that an antiviral medication put me into complete remission, so I am pursuing that.

    It takes longer to find solutions to CFIDS because there are so many things which trigger it and keep it going, but if you can find these factors, you can get better.

    Also, be sure to check for allergies and clean up your living and working environments.

    Good luck and hang in there. There are a lot of people who have gotten well from CFIDS, or at least, have been able to go into remission.

    Love, Mikie
  5. goingslowlycrazy

    goingslowlycrazy New Member

    Hi Kukla!
    Am I right in assuming that you are in the UK as you called you doc a GP? I am in the UK too Buckingham)and was also diagnosed by my GP.
    I have found that this board is absolutely invaluable in the information and support and friendship it brings.
    When I was newly diagnosed, others here advised me to just visit the board and read as much as I could...which was great advice. My GP actually told me that most CFS patients know more about their illness than their doctors do - which sounds like a terrible admission but is actually a very honest and accurate one. He also told me that if there is anything particular that I would like to try - to just come back and he would arrange it for me.
    You and I are VERY lucky just in the fact that our GP's
    a) believe that CFS exists
    b) don't tell us it is 'all in our heads' and
    c) appear willing to help.
    My next step (following weeks and weeks of research) is going to be to join the ME Association, as they have a list of ME specialists in the UK which my GP will then be able to access. I think it's terrible that I have to become a member for him to get that info - but there it is.
    I will then go back to him and ask him to refer me - so that I can get a 'proper' diagnosis and treatment regime set out.
    Hope this helps you, if you need to chat my email addy is faeriesong@skyespirit.com
    hugs
    Mary x
  6. kukla

    kukla New Member

    Actually i'm living in australia. too everyone who responded, i really appreciated, considering this is pretty much the first time on the net (my daughters are showing me how to use it.) today i actually went and had some blood tests done to check for vitamin defincies. hopefully i'll have the results by the end of the week. if i ever find out anything more in regards to my situation and any advice for others i will be more than happy to share it. actually i'm still in awe at how nice people are on the net. never realised peoplr who never met you can be concerned. would be nicer to talk about nicer things instead of illness, but everyone's kind words have allready given me much more confidence with what's going on currently.
    ~john
  7. layinglow

    layinglow New Member

    Welcome to the board---sorry it is under these circumstances, but do know that the support here is great, and the information superb.

    I have CFS and FMS. I have managed with my specialist help to get many of the FMS symptoms reduced and manageable. We are now working on the CFS....and it's a matter of trial and error, and finding the treatment regime that fits the individual. Recently I have begun B12 Injections at home, and will begin BComplex injections after a few test go rounds at the Docs to make sure I will not have adverse/allergic reactions. My next plan is to begin an antiviral therapy--some have had very good results with this. I try to go slow and introduce one thing at a time so I can see what is and is not helping, and also I have multiple chemical sensitivities (MCS) which are common with these disorders. So need to introduce carefully to watch for reactions, and know what is the culprit, if any.

    Please find a specialist in CFS it makes all the difference--my pain, depression, anxiety and many other symptoms are being managed. We are now working on the horrendous fatigue.

    Best wishes,
    LL