Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jun 25, 2010.

  1. greatgran

    greatgran Member

    As long as I have had CFS/FM it still doesn't regester in my brain. WHY we can feel somewhat normal one day and feel we are dying the next. No rhyme or reason..

    I have tried pacing which may at times help but then I still have my horrible days. Then I say whats the use I can do this today and I am going to, only to end up in bed for however long it takes to get back on my feet.. Pacing or not pacing..

    Even my doctors can't explain it.. One did say he thought it was an infection of the central nervous system.. duh... that tells me nothing.

    Just venting, thanks,
  2. Nanie46

    Nanie46 Moderator

    Hi....a common infection of the central nervous system is Borrelia burgdorferi (Lyme).

  3. shirley1259

    shirley1259 New Member

    I have given up on pacing myself. When I have good days I will do as much as I can. I do take alot of breaks but I know that if I dont do all I can on a good day there will come the bad ones and then I wont be able to do anything.
    I did however push myself way to hard yesterday and could barely get myself out of the bed this morning when I woke up.
    I am hoping with taking it easy right now that I will be able to get some things done this afternoon. I have realized that I am alot better off as far as some here on the board and I do tend to take advantage of that. Summers are really good for me as far as my fibro and so I am working on getting my neglected house cleaned up before winter hits.
    There is no explanations that I know of for how this disease acts. I just know that winters are aweful for me.
    Hope someday there is an answer to all of this
  4. greatgran

    greatgran Member

    Been tested for Lyme 4 times, well you know how that goes.. Negative test no antibiotics

    I thought duh, if its infection give me antibiotics , he said well it is viral..

    Feel its a no win situation..

  5. greatgran

    greatgran Member

    Same here it doesn't seem to make a difference. What I do isn't very much to so called norms but to me its a lot. I was in bed for 2 days thinking I would die but this morning I got up showered, went got a few grocires, and gas. Been doing some business by pone and computer, and have dinner in the oven.. Now this is a big day for me and I am ready for rest.

    Hubby just called and his nephew is coming to town over the weekend and will be crashing here.. They will never get it. Oh, well..

    Winter not Summer seems to make a difference.. I just can't stand to be out in the hot sun.

    Maybe someday there will be an answer,
  6. quanked

    quanked Member

    I began Ubiquinol about 5 or 6 weeks ago--something I read about on this board. I began being able to do more than I have in a long time. Then, on the 23rd I began to crash. Why? Was it the Ubiquinol and it quit working or was I having a mini remission? I had this happen with Ligaplex II a year or so ago or not.

    I feel so powerless over my body. My experience has been the same--overdoing can cause me to crash (or so I think--anyone--even the able bodied--can overdo and pay for it the next day or 2 depending on how much one over did) or I can go down for no apparent reason.

    While I have had more energy my mind fog did not clear, I was still very uncoordinated, and on and on.

    I am not sure pacing really helps either. In part because the pacing needs to change. Pacing is dictated by how much energy I have and it changes from time to time and I am not notified of these changes in advance : )

    Vent on--

  7. Nanie46

    Nanie46 Moderator

    All my tests were negative too...and so were alot of people with Lyme on lymenet.org.

    It's such a travesty that Dr's are so undeducated that they depend solely on a lab test to decide if a person has an illness....where are their clinical skills??

    Lyme is a clinical diagnosis based on history, symptoms and exam, not a lab test.

    It would require seeking a Lyme literate MD or ND to help you.

    When I got sick my Dr didn't recognize it was lyme and told me it was viral also.

    I feel for you...there's alot of people suffering needlessly.

    But, it's probably your answer and without treatment you can't recover.

    All the best to you in finding your answer and getting the right treatment.
  8. greatgran

    greatgran Member

    Where you dx with lyme? If so what are or where your symptoms.. The doc said I didn't have the symptoms. No fever, No joint pain, No getting worse, can't remember the others. So would you please give me a list of your symptoms..

    Been searching for the right treatment or dx for 8 yrs. Just trying to learn to live with it. Also he said with lyme I wouldn't feel well one day and horrible the next..Does it come and go??

    We haven't a lyme specialist anywhere near here .. Not sure where to locate a literate lyme m.d. What is a nd is that a natural doc ? been to one of those he put me on to many supplements at once.. Oh, well..going to ck out the webb site you posted.

  9. karynwolfe

    karynwolfe New Member

    "Also he said with lyme I wouldn't feel well one day and horrible the next."

    Well just for starters that is a total lie...

    A lot of things can impact our level of functioning. The weather, stress, how active we are one day to the next...

    Pacing is absolutely everything, when it comes to preventing the post-exertional symptoms. Also the symptoms of classic CFIDS don't occur until 24-72 hours AFTER the exertion so it can be a real challegen to remember if you've done something or not to cause the exacerbation.

    You said "whats the use I can do this today and I am going to"...and that's a problem. If you have a good day, DON'T overexert yourself, and you'll probably start to have more good days because you haven't exhausted all your resources on the first day of better health.
  10. Nanie46

    Nanie46 Moderator


    I was diagnosed with Lyme in Feb 2009 after 21 years with only a FM diagnosis.

    Not everyone's Lyme symptoms are exactly the same.

    The most common symptoms are fatigue, pain, cognitive problems and sleep problems.

    Some people do not have pain. Others have balance problems or headaches or light and/or sound sensitivity or muscle twitches...and so many other possible symptoms.

    My main symptoms are pain,stiffness, insomnia, and fatigue.

    I also have alot of symptoms which are not quite as bad as the pain, such as light and sound sensitivity, muscle twitches, feelings of pins and needles/stabbing pains/electric shocks/buzzing, forgetfulness, word retrieval problems, floaters, sore soles, tinnitus, cold and heat intolerance, hot flashes, mild IBS, and itchy skin.

    I know other people with lyme who have migraines, trigeminal neuralgia, numbness/tingling, vision problems, arthritis, tremors, depression, anxiety, panic attacks, night sweats, air hunger, and many other symptoms.

    Please take a look at the symptom list on pages 9-11 of this paper...if you have many symptoms, you should strongly consider Lyme and common coinfections like Babesia, Bartonella and Ehrlichia....


    This is a very easy to read booklet which describes the basics of Lyme and it also has a very good symptom list....


    You can locate a Lyme literate MD by going to lymenet.org....click on flash discussion....sign up for free.....click on the "Seeking a Doctor" board....click on Create a Post and ask for a LLMD in your state.

    Yes, a ND is a naturopathic Dr. Some people see LLND's, but I see a LLMD.

    With lyme, some days can definitely be better than others. The bacteria cycles and symptoms can flare when the bacteria are multiplying.

    It also depends on which coinfections a person has. It is common for people with lyme to have Babesia, Bartonella, Ehrlichia, etc.

    You do not have to have joint pain, or be going steadily downhill to have lyme.

    Many people creep along for years feeling sick but not disabled, until someday you have a stressful event and boom!...the Lyme bacteria go crazy and you get really worse.

    It's really quite complex.

    There are many, many people sick with a chronic Borrelia burgdorferi infection that will never be diagnosed and never have the chance to recover.

  11. ilovepink4

    ilovepink4 Member

    I have a question.....if you were incorrectly diagnosed and had lyme that was untreated fo rmany years, can you be treated at that point? I thought that if you were not treated soon after getting lyme, you couldn't be cured.

    What is the treatment? antibiotics?

  12. Nanie46

    Nanie46 Moderator


    Yes, you can be treated for lyme if you've had it for a long time.

    Dr's say it goes into remission, not really cured.

    It requires long term combination antibiotic therapy.

    It is about eradicating symptoms and regaining the quality of life that you desire.
  13. AnneTheresa

    AnneTheresa Member

    Quanked said it perfectly 'I feel powerless over my body'. That's the way I feel too. I can feel okay one day, then without apparent cause, I can feel horrible then next.

    I do however, believe in pacing and so I try too keep up with my chores on my bad days and I try not to overdo on a good day. I'm retired (early retirement via disability) and my children are grown and live away so I have the freedom to work and rest in intervals best suited to my physical needs.

    I have a list of tasks and household responsibilities that I "must" do each day (for example pet care, cleaning the washrooms, etc.) and no matter how bad I feel I do these things. Then I have a second tier of responsibilities that I add to these basic chores on the days that I'm feeling better.

    A third tier includes such things as errands and outings and this reflects the days I consider good. As tempting as it may be to go-go-go on a good day, I only do this on such occasions that are worth risking a flare and the subsequent down-time. Such events may include such things as a child's graduation ceremony, a wedding, a day at the zoo, etc.

    It can be difficult to make plans when you live with fibromyalgia, likewise it can be difficult to be spontaneous. The best we can do is be grateful for the good days, even though they be few and far between.

    I've just realized that what I consider a good day now are the sorts of days that I would have considered a bad day even a few short years ago. I've had FMS for approx. 25 years and my perspective broadens every year.

    God bless,
    Anne Theresa

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