symptoms that change daily

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Aug 15, 2009.

  1. ktp812

    ktp812 New Member

    I was originally diagnosed with CFS and then they are saying CFS again. My question is with CFS do the symptoms change daily. I mean I will have dry eyes for two or three days and then it will go completely away for months.

    Then I have muscle pain in one place for a week then it will just disappear. The one constant is of course my unrelenting fatigue.

    I am seeing a new doctor next week in the hopes he can find out what has been wrong with me for the past 5 years...
  2. butterflydream

    butterflydream New Member

    of what you want to say to the doc is a good idea.

    Seems like the appointments are so quick and i have found to write down questions and symptoms so that i don't forget when i'm at talking to my doc.

    Hope you find some answers at your appt.

    Wish you well
  3. sascha

    sascha Member

    i've gone through varying phases in my ten years of cfids, and within those phases symptoms change. seems as though different expressions of unwellness are being manifested- there's no rhyme or reason really- just this, then that for a while, then try a little of something else.

    i've had skin eruptions, visual disturbances, dizziness, nausea, pain and aching all over, temperature, of course the profound unrelenting utter and total exhaustion- bruised feeling in the head, vise around the neck, for a time even seemed as though i was too exhausted to lie on couch with eyes closed!! didn't have energy enough to even sleep!! weird-- also lots of IBS problems (ongoing theme..), trouble walking= and on and on...

    but then, i would get a bit of clear time and do something fun and think - wow, this is how 'normal' people feel, then that would become a distant memory.

    but i am fighting hard now on a comeback trail- doing all i can to make it back so i can do what i love to do-- never give up search- i feel i am making progress now, i really do. Fight the good fight!!

  4. karynwolfe

    karynwolfe New Member

    My advice:

    Put the CFS questions on hold: If you've EVER been diagnosed with Lyme disease, where your test results showed it, you REALLY need to start treatment for that, as soon as possible. =|
  5. jasminetee

    jasminetee Member

    Yes, the symptoms of CFS are constantly changing and when they disappear it's like they were never there. That's why we can function fine one minute and be unable to the next. All of the symptoms do this although the more severe CFS is the more persistent the symptoms are.

    I'm curious. Do you have pain in both knees, even intermittently? Not just a part of the knee, but the whole thing.

    Do you have a lot of joint pain and/or swelling? Do your knuckles swell and hurt?
    " The joint swelling[in Lyme], which may or may not be painful, frequently is episodic, recurrent and migratory if multiple joints are involved. Any joint can be affected including the TMJ (temporomandibular) and small joints of the fingers."

    Did you ever have a Bulls eye Rash?

    Have your ears, hands or upper cheeks turned red since you've been ill?

    Have you had the Tender Point Exam for Fibromyalgia?

    Do you have a recurring sore throat?

    It's possible to have both CFS and Lyme Disease as well.

    Oh wow, when I was reading about Lyme just now I came across this: "Lyme vaccine was pulled from the market because it was causing reactions and reactivating a slow onset of Lyme disease."
    That's just frightening. I never even heard of a Lyme vaccine.

    [This Message was Edited on 08/18/2009]
  6. ktp812

    ktp812 New Member

    I saw my new doctor yesterday. He did some blood work testing for alot of stuff. He believes this was all caused by an infection in 2004 when all my symptoms started. I had blood work done at the time and it showed some very off the chart readings. I had bad 24 hour flu and haven't been the same.

    He wants me to see an endo and is arranging that because I am on cortef and synthroid.
    He also wants me to see a Lyme/ID doctor since I was given a Lyme diagnosis a few years ago.

    I had been on abx for almost three years and it never touched the fatigue...

    I don't have any pain or tender points-never had. I never had a bullseye rash or joint pain/swelling. No flu symptoms or sore throats. In fact I never get sick.. I do live in an endemic Lyme state but of course doesn't mean this was or is Lyme.

    I tend to think not after all the abx. My main complaint is just the unrelenting fatigue/exhaustion and inability to handle stress and the unrfreshing sleep.

    The doctor thinks I could end up with a CFS diagnosis even though I don't qualify by CDC standards.

    So I am waiting on the blood work and the endo appt. I just really know where this is all leading to once again.

    Thank you everyone for your replies! It is very much appreciated.

  7. jasminetee

    jasminetee Member

    Gee, your situation is mysterious. It does seem that some kind of virus is probably causing you to have all this fatigue since it started with a flu. You know, there are many, many viruses out there that cause all sorts of things that the medical community admits to not knowing about.

    I have friends and relatives that have caught mysterious viruses that have hospitalized them and caused things like their heart to stop and then start again, or their fingernails to turn black and fall out or have caused major fatigue for 3 months at a time.

    All of them recovered though and were again able to work full time. No one knows what they had.

    It's a complex world we live in. I hope you can figure something out and/or that your symptoms get better.

  8. ktp812

    ktp812 New Member

    That is what the doctor's say..I am a difficult case. I haven't heard back from the doctor yet on the blood work.
    I just bought a book by Dr. Bell and am reading it now. It sounds like me without the pain.

    I am just hoping I have some sort of remission again like I did in 2008. It all definately started with that virus but no doctor seems to know what it was.

    The fatigue is definately in the CFS category by the way it is described and my body can't handle stress no matter what kind it is. I just end up crashing.

    I am waiting to hear from the endo in the hopes I can see him soon. He is one of the top in NE so it might be a wait.

    I would be estatic if only this fatigue could be reduced a little....that is really my main problem.

  9. munch1958

    munch1958 Member

    One of the "hallmark" symptoms of Lyme is changing symptoms! If you have joint or muscle pain that moves around it's Lyme!

    I thought I had a CFS & FM diagnosis for 28 years. Then I got some positive Lyme specific bands in a routine Western blot test for Lyme Disease Complex (LDC) at a FFC clinic. I now know it was LDC causing my fatigue all along.

    The experts are now calling it LDC because most people with this illness will test positive for strains of mycoplasma, EBV, CMV, Herpes viruses, etc.

    8 out of 10 people with CFS and/or FM do test positive for LDC. Less than 40% ever have a rash. Many times (as in my case), the rash is present but the patient is told it's a "spider bite" or "ringworm" or "something else" because the doctor doesn't know any better or most commonly "we don't have Lyme in this state".

    I've been on Abx therapy for 3.5 years. My fatigue didn't go away until about 2.5 years into treatment. This is not unusual because spirochetes hide from the immune system by converting into cysts. If you are not on Flagyl or Tindamax the cysts while on Abx the Lyme but does not die. You can take all of the Abx in the world and still not be cured. Lyme is a tough bug to beat. The IDSA and ALDF will have you believe otherwise.

    I no longer have fatigue. I'm managing it with daily shots of B12 and one tablet of Folapro a day. Many of my symptoms were from multiple hormone deficiencies too.
  10. ktp812

    ktp812 New Member

    I was being treated for Lyme up until June of this year. I was even seeing one of the top LLMD's in NY. He finally told me he wasn't sure I had Lyme since nothing would touch the exhaustion/fatigue. He was going to send me to a herbalist.

    I honestly feel I have CFS caused by some type of virus. I showed my original blood tests to my new doc and he said it was viral related. I had high sed rate, high crp, low wbc, very high liver enzymes. This was back in 2004 when I first became sick.

    I was on IV for 9 months along with many other abx but never flagyl or tindamax. The doc decided I had been on enough.

    I had the WB done and had only band 41 and a few IND. I don't believe that is enough to think I had Lyme. They also tested me for all the things you listed and more. Nothing ever showed up.

    I have no idea what caused this and probably never will. I just feel that the fatigue-which doesn't come close to describing what I have sounds more like CFS especially since I had been treated for a while.

    My new doc wants to send me to another ID doctor but I don't think that will do any good. I never had any joint pain but some muscle pain which never lasts more than a day.

    So I am going to wait to see the endo since I do have extremely low cortisol levels and maybe he can figure this out somewhat. I am on cortef and synthroid.

    After 5 years you would think the doctors would be able to figure it out but....

    Thanks for your post and all the information.
    [This Message was Edited on 08/24/2009]