Discussion in 'Fibromyalgia Main Forum' started by ktp812, Dec 27, 2009.

  1. ktp812

    ktp812 New Member

    I was originally diagnosed with CFS 5 years ago. Then Lyme and now CFS again...I have a question about "crashes".

    I experience a severe crash about every 2-3 months where I can't get out of bed due to severe physical internal exhaustion. I can't even begin (or maybe you all understand) to explain what this feels like. I guess kind of like they have pulled my plug and drained the life out of me and left me with about 20 percent. I can only lay in bed with my eyes closed. My muscle pain and twitching in my calf becomes much more intense and painful. This will last between 2-3 days. Then I am back to my normal everyday fatigue.

    I sometimes have sweats and I completely lose my appetite. I can honestly say I feel as though my heart is going to stop beating from exhaustion. I don't have any "flu" aches or pains or anything like that.

    I never know when this is going to happen but I can feel it coming on and know I am in for trouble. It is terribly scary because I can't do anything at all during these....

    The doctors are still unsure if I actually have CFS because I don't fit the criteria but I have been experiencing fatigue and other symptoms since I became sick wth flu symptoms in 2004. I have never been the same. The flu went away but the fatigue never has.

    Could some of you please post what happens to you during a "crash" because they are very scary and uncomfortable. Thanks....

  2. TeaBisqit

    TeaBisqit Member

    If you had viral onset, you definitely have something. And you can have both Lyme and CFIDS or a variety of other things.

    For me, a crash is usually severe light, sound, scent sensitivity with severe pain all over, including pain like someone is ripping every nerve cell out of my body. Fatigue to where I can't walk around and have trouble just walking the few feet to the bathroom. Weakness to the point where even my voice is weak. I have trouble speaking because I'm so weak. I'm sure I'm leaving symptoms out, but those are the majors. It's horrible.
  3. ktp812

    ktp812 New Member

    Yes I had viral onset in Nov 2004 but most of the symptoms didn't hit me until about 3 weeks later.

    I was treated for Lyme for 30 months with 19 different abx combos and I must say that I have many more CFS symptoms including unrefreshing sleep, constant fatigue and these crashes.

    They are very horrible, scary and extremely uncomfortable and nothing helps. My exhaustion is different when I have a crash like I tried to describe as though the life plug has been pulled but not totally.

    I don't have any added symptoms...just my leg pain which includes burning, shooting, stabbing and electric current increases and the twitching increases to the point of painful.

    Not once during my lyme treatment did the fatigue or leg pain go away...

    Thank you for your reply..I feel very alone when I am feeling so horrible. I couldn't go to visit family because I am too sick.
  4. Nanie46

    Nanie46 Moderator


    I also have lyme. I thought my illness (which was called "fibromyalgia" for 21 years) also had a viral origin.. it sure felt like a respiratory virus and my Dr told me at the time that it was viral.

    I now know that it was bacterial. Since you know you have lyme, the same may have happened to you. The flu-like illness is when the bacteria borrelia burgdorferi started (this flu like illness is typical of lyme). Then several weeks or months later, other symptoms start.

    It sounds very probable that you have an untreated coinfection, such as babesia.

    Profound fatigue and sweats are associated with babesia.

    Lyme symptoms will often not respond well to treatment if babesia or bartonella is not treated first.

    Please read pages 22-27 of Dr B's guidelines....


    Babesia can be hard to treat. It is necessary to use a high enough dose of Mepron for a long enough time, which can vary from person to person.

    My LLMD uses Zithromax and Artemesia with Mepron.

    Some LLMD's use Malarone.

    Can you call your LLMD and get an appt for an evaluation for coinfections like babesia?

    Many people have negative babesia tests because there are many species of babesia that they don't even have tests for.

    You may need further lyme treatment, once coinfections are addressed.

    There are lots of helpful people on lymenet.org's Medical Questions board also.
  5. TeaBisqit

    TeaBisqit Member

    I have Lyme, but I've always thought my CFIDS was an additional thing because I was advanced Lyme way before I got sick with viral onset CFIDS/ME.

    There are many people who just plain cannot get well after Lyme. And many of us tried a million antibiotics. It just plain either doesn't leave or leaves us with enough damage that we will not get well.

    I have the muscle twitching/spasming, too.
  6. ktp812

    ktp812 New Member

    I have been through all the treatments for babesia by Dr. H in New York. I was tested for them multiple times and although I know the tests are not reliable he treated my anyway.

    I was on rifampin for 10 months for bart and on malarone/plaq for babesia plus enula. They decided I had enough treatment for those and stopped them.

    The abx Never once relieved my fatigue or twitching which were my very first symptoms. So the Lyme theory is done and the doctors have sent me on my way.

    Like I said in my post I believe 19 different abx along with IV and IM is enough...even Dr. H said he thought I needed to see either a endocrinologist or a chinese herbal doctor he recommended. If the abx had done anything to at least relieve my two most troublesome symptoms I woule have continued.

    Now I have to look forward and figure out what I can do to help myself cope with CFS....so does anyone have any other advice on how to prevent these crashes because they are so not fun..
  7. 3gs

    3gs New Member

    You described a crash well. If I over do along with your symptoms can be intense pain,insommina.

    Pacing or trying to is key. Do you crash 24 to 48 hrs after doing something? I may feel well enough to do something,then bam it hits after. Its a constant rollercoaster. Also weather can cause a crash.

    I understand how scary and uncomfortable they are. Riding it out is the only thing I know. warm baths,fluids and rest. manage the pain.

    sorry you joined this club
  8. dsalling

    dsalling New Member

    I have Fibromyalgia and have had it for over 20 years. When I was working I would feel like I was getting the flu and couldn't get out of bed in the morning. I called in sick about every 6 to 8 weeks. After about 3 days I was able to get back to work.
    I am disabled now and 65 years old. I used the guaifenesin protocol for several years in the beginning and it helped a lot. I was able to get benefits even tho I didn't restrict my diet or products containing salicylates.
    In the past 10 or more years I have continued to have fatigue all the time, some days worse than others. I have cut back on my pain meds and antidepressants because I am hot all the time and my skin is wet. I carry an ice pack with me when I know I am going somewhere it will be hot. I use one at home all the time because my husband is excessively cold.
    My therapist, who I just started to see suggested I may have NMH which is common in CFS and FSM. I had never heard of it even tho I have done a lot of research and read many books. Pro health has an article by Dr Chaney on what it is and how to treat it.
    I started the protocol yesterday with Licorice. Felt terrible yesterday but so far today I feel the best I have in many months or more.
    You might want to get Dr Teitelbaum's book From Fatigued to Fantastic. He has an incredible amount of information in the book, including NMH which I totally missed while reading it.
    I hope this info is helpful
  9. hermitlady

    hermitlady Member

    I know this feeling all too well! I unfortunately don't spring back very fast after I crash, it can last for a couple of wks.

    I honestly feel like I'm dying, like all of my systems are nearly shutting down from lack of energy. I get so weak, I can barely hold my head up, can barely chew food and swallow, super sensitive to all sensory input, it's hard to speak, understand speech and process anything mentally, aching terribly, sweating/chilling, low body temp, my guts hurt inside, nauseous, headache...just to name a few!

    I also thought for yrs that I'd keep getting the flu every few wks, but I would never have a fever. After probably 10-15 yrs, it got much worse and the last 13 yrs I've had the diagnosis of Depression, then FM, then CFS and most recently a genetic metabolic disorder (can't produce energy in mitochondria). It's definitely gotten progressively worse as I've gotten older.
  10. shari1677

    shari1677 New Member

    Your crash describes me 100%!!

    I relapsed with my FM badly about 3 years ago. I was in bed for 6 (SIX) weeks!! Since then I have never been the same. I've been in my PJs since then for the most part.

    Other than being tired/fatigued most of the time, I do have those crashes occasionally as you describe them. My symptoms - I am so tired I cant roll over in bed, which pretty much describes what you have said.

    I have found nothing that helps it, other then sleep, sleep and more sleeep.
  11. justjanelle

    justjanelle New Member

    Christa, I wanted to thank you for posting the Canadian Criteria. In spite of the fact that several people have made reference to it over the time I've been on the Board here, I'd never actually seen it.

    I've had a FM diagnosis since 2002 after a sudden sustained "crash" and the onset of widespread pain and muscle spasms, but had been trying to get answers for the fatigue, post-exertional malaise, sleep problems, etc. since I was pregnant with my son in 1992. My FM doctor won't discuss CFS "since it wouldn't change the treatment."

    Now, I can see that I definitely have CFS according to the Canadian Criteria, and have had since 1992. It's good to finally have some answers.

    Thanks and best wishes,