Crashes or Relapses

Discussion in 'Fibromyalgia Main Forum' started by Perrier, Mar 1, 2007.

  1. Perrier

    Perrier New Member

    How long can a severe crash or relapse last? My daughter became ill in 2002(severe--bedridden for almost two years) and then slowly crawled out and by 2006 began to work. She worked for 30 hours for about eight months and all went well; then they upped her hours and she was working 50 hours (she loved her job) and then had such a crash, she is back in the hole. She has been this way for three months now, in agony, daily, malaise, weakness, the whole catastrophe. How long does this sort of thing last. Folks on this site seem knowledgeable.
  2. Mini4Me

    Mini4Me New Member

    Are you talking about FM or Chronic Fatigue or both? I think relapses are different for different people. I have been down now for quite some time (maybe more than a year). I have Fibro. Sorry your daughter is suffering. My heart goes out to her.
    Best of luck...
    Mini
  3. Shalala

    Shalala New Member

    I began having an FMS "flare" just after the holidays and missed a lot of work in January and finally ended up on STD in February and am scheduled to return to work (hopefully) March 12th. I am taking several new meds and will probably end up on a c-pap machine for sleep apnea. I am seeing a sleep specialist next week. I have to work as long I possibly can so I can financially afford to apply for SSDI (isn't that an oxymoron???).

    Does your daughter have FMLA through her job? Length of time a flare can last will vary based upon the condition they have and the individual. Everyone is different.
  4. MsE

    MsE New Member

    I've had CFS flares that last for months and those that last three days.
  5. Perrier

    Perrier New Member

    My daughter has CFS, and some Fibro. I saw two charts in Bell's book and I must say one of them really scared me. He has one chart where the person gets the CFS and then over the length of four years sort of crawls out of it and then the impression I have from what he writes is that they sort of continue life this way. He says most of the people fit into this category. Then he has a chart on the next page where the person is also crawling out of the hole and after three or four years is better and at around 70% and then they have a sudden drop and then just stay down at the botton and flat-line.

    I thought my daughter was going to somehow manage, and this 'crash' came most unexpectedly, with no real forewarning, except that she had lots of obligations at work and could not fit in rest times as she had when she worked the 30 hours. She has no benefits because she was on contract, and on trial, if you will. She has become utterly despondent, and I have trouble generating hope. She came back home, lives in her childhood room, and is bound to it; everything was ripped from her once again. In 2002 she lived in another city, had a life, a job, and then got this 'flu' and after came this CFS. She came back home, and then went back to the same job in 2006, and now in Dec. of 2006 has had life snatched away again. I do not see much change during the past three months. One day is almost like the next; except that when she first got sick, there was this stark hope and drive to get well, now she just doesn't seem to believe she will be able to do her job again. If anyone had to recommend one of the top CFS doctors, whom would they recommend?
  6. Perrier

    Perrier New Member

    My daughter has CFS, and some Fibro. I saw two charts in Bell's book and I must say one of them really scared me. He has one chart where the person gets the CFS and then over the length of four years sort of crawls out of it and then the impression I have from what he writes is that they sort of continue life this way. He says most of the people fit into this category. Then he has a chart on the next page where the person is also crawling out of the hole and after three or four years is better and at around 70% and then they have a sudden drop and then just stay down at the botton and flat-line.

    I thought my daughter was going to somehow manage, and this 'crash' came most unexpectedly, with no real forewarning, except that she had lots of obligations at work and could not fit in rest times as she had when she worked the 30 hours. She has no benefits because she was on contract, and on trial, if you will. She has become utterly despondent, and I have trouble generating hope. She came back home, lives in her childhood room, and is bound to it; everything was ripped from her once again. In 2002 she lived in another city, had a life, a job, and then got this 'flu' and after came this CFS. She came back home, and then went back to the same job in 2006, and now in Dec. of 2006 has had life snatched away again. I do not see much change during the past three months. One day is almost like the next; except that when she first got sick, there was this stark hope and drive to get well, now she just doesn't seem to believe she will be able to do her job again. If anyone had to recommend one of the top CFS doctors, whom would they recommend?
  7. cherylsue

    cherylsue Member

    I have had 3 CFS relapses in 6 years including the onset. Each episode lasts 13 months for me. Currently I am in month 8 of my third episode.

    I went back to work between episodes. I had a remission of 3 years after the first, and 11 months after the second.

    Working 50 hours a week is an invite for relapse.

    If she has remitting/relapsing CFS, it is probably a herpes virus such as CMV or HHV6.

    I just started Nexavir, formerly kutapressin, two weeks ago to help me get out of the relapse. Nexavir kills all the herpes viruses in vitro. Nexavir is being used by a lot of CFS docs.

    Do a search on this site for Nexavir or kutapressin to get people's experience. It may help your daughter recover a little sooner.

    It's a slow recovery, but tell her to hang in there. Do the research. I especially like Dr. Cheney and Dr. DeMeirleir.

    Good luck.

    CherylSue
  8. Perrier

    Perrier New Member

    I am very distressed to hear that it takes years to dig out of one of these collapses. This is very hard for all young people. She worked thirty hours and that was fine, this lasted eight months, then they changed her job and the director was not cooperative and piled on time sensitive stuff and she ended up working the fifty hours for eight weeks and then had a collapse. She was trying to renegociate the work but the crash came before she could; initially she just thought she was slow at doing the new stuff and thought if she toughed it out she would get to be able to do it faster. She was riding a bike at this time, and feeling very good. Believe it or not when she was working the thirty hours she actually got healthier; it was so exhilirating to be able to be part of the world again. This is hearbreaking to look at; so many young lives felled by this bizarre tyrannical illness.

    It is very hard to fine doctors who are helpful and who are knowledgeable. And I am open to all comments on this front.
  9. MKate

    MKate New Member

    HI -

    I've sufferd 14 years - 46 yrs old now. However, I've never been "totally down" except at 1st yr. Then overdid it and have worked hared to come back during the next 12 years.
    NO social life for 6 years...Limited now, but MUCH better.

    While my relapses are shorter than others, I may just be lucky. Encourage your daughter by taking the time (as you are) to reserach the detoxing and vitamins that will help support her body's recovery. Your help can really be what sustains her. She WILL get better. It will dramatically improve her time frames.

    If I had had the "good fortune" to crash hard enough, and someone could have researched for me, I think alot of my recovery over 14 years would have been shortened.

    I finally went to a clinic 2 years ago and they put a detox and vitamin program together for me. They also heavily detoxed my body. I came back able to do things on the weekends where as before I'd slept from Fri - Sunday night just to work. I had not been able to figure out by myself this program I'll share for you below. Remember you are unpealing an onion - it takes time for her body to shed the layers of the effects of this disease (or causes of it?) the information out there but it can be overwhelming. I'll list the main items here:

    Categories to learn about:
    Digestion -- improve it with enzymes Acidopholus (1/2 hour before each meal) and probiotics Wobenzyme is one form.

    Book Dr. Jensens Guide to Better Bowel Care, Dr. Bernard Jenson.

    Detox Her Digestion:
    Colon Cleanses and liver detox support.

    Adrenal Support:
    Find a naturopathic doctor to help run tests and/or to provide the right support / herbs / vitamins. I took one for about 1 year, and then haven't needed to since then.

    Food Allergies:
    Ask the physician to take blood work for IGG sensitivities and send to Great Smokies Labs. If they don't know about it just do the research and tell them the address to request the kit....It'll provide an initial list of foods to eliminate or rotate so as not to overload the immune system. Test again after several months to see what changes are made. I had one full page both sides that I could not eat. Over 6 years gained all back except I now eliminate white flour and milk.

    Vitamin Support:
    DHEA 25mg - (helps hormone levels)
    Garlic (immunie system and parasite control)
    Magnesium -- (200mg - 800 depends on person)
    Alpha Lipoic Acid (reserach amount, I take 250MG)
    Choline Inosotol -
    N Acetyle Cystene
    Same-E (I take 400Mgcirculation, reduces inflamation, depression)
    Ginko - 25mg
    Super Enzymes (mentioned above 1/2 hr before meal - antiviral)
    Acidopholis - (" immune support and digestions 8 millin/meal)
    Pantothenic acid
    Mega Antioxidant (multi-vitamin)
    Mineral complex (multi)
    Omega 3 Fatty Acids (helps immune, inflamation, other, etc)
    MSM (I take 100MG)
    L Carnatine (I just started, 500Mg -- helps mitochondria)
    Co-Q10 (mitochondria - try levels, I take 100mg now, was taking 25mg)
    L Methionine (new to me - for energy in cells)
    Niaciniamide (new to me -for energy to cells)

    Vitamin C (high doses -- fights infection/detox - - I take 6000 mg / day, I am detoxing. I'll drop back to 3000mg later)
    Echinacia -- immunity agains virus and other

    Kelp --- food/nutrient -- helps detoxing too
    Chlorophyll -- for detoxing (I have high mercury levels)

    Your daughter may not need all of theses, but I've listed them to help pull some of the megainformation you'll read about together.

    FOOD:
    learn how to juice from organic fruits and vegestables to allow body to digest and take in nutrients naturally.

    Cook very limited - on stove (not microwave), and use organic as much as possible...lots of veges.

    Note: I struggled for this last year to recover after coming back from the clinic and doing too much! I am now trying to create a job for myself where I work only 30 hours per week, and NO MORE.....I am steadfast with this now - because I understand I cannot push -- and I will be FAR less able (even sick, disabled, or contemplating a dire future if I don't). I didn't reach this decision easily. It means giving up my work as an independent financial advisor. However, I'd rather have benefits, steady income and a 401k -- plus an employer who understands...Tricky to do - - but imperative.

    Encourage your daugther to focus on rest and recovery first. Then, she can test her body's strenth with small contracts as she get's stronger. If she can heal over months or a couple years, she may be at a place to grow her confidence in her body to know her levels too. It takes time to know these.

    Note: I have never stopped working -- although with my private practice I did limit it to about 20 productive hours / week this last year. She is not alone. Being kind to herself about this is the best way. It's hard - but the only way to build a reasonable life.

    Best wishes! and Prayers!

    Mkate
  10. MKate

    MKate New Member

    HI -

    I've sufferd 14 years - 46 yrs old now. However, I've never been "totally down" except at 1st yr. Then overdid it and have worked hared to come back during the next 12 years.
    NO social life for 6 years...Limited now, but MUCH better.

    While my relapses are shorter than others, I may just be lucky. Encourage your daughter by taking the time (as you are) to reserach the detoxing and vitamins that will help support her body's recovery. Your help can really be what sustains her. She WILL get better. It will dramatically improve her time frames.

    If I had had the "good fortune" to crash hard enough, and someone could have researched for me, I think alot of my recovery over 14 years would have been shortened.

    I finally went to a clinic 2 years ago and they put a detox and vitamin program together for me. They also heavily detoxed my body. I came back able to do things on the weekends where as before I'd slept from Fri - Sunday night just to work. I had not been able to figure out by myself this program I'll share for you below. Remember you are unpealing an onion - it takes time for her body to shed the layers of the effects of this disease (or causes of it?) the information out there but it can be overwhelming. I'll list the main items here:

    Categories to learn about:
    Digestion -- improve it with enzymes Acidopholus (1/2 hour before each meal) and probiotics Wobenzyme is one form.

    Book Dr. Jensens Guide to Better Bowel Care, Dr. Bernard Jenson.

    Detox Her Digestion:
    Colon Cleanses and liver detox support.

    Adrenal Support:
    Find a naturopathic doctor to help run tests and/or to provide the right support / herbs / vitamins. I took one for about 1 year, and then haven't needed to since then.

    Food Allergies:
    Ask the physician to take blood work for IGG sensitivities and send to Great Smokies Labs. If they don't know about it just do the research and tell them the address to request the kit....It'll provide an initial list of foods to eliminate or rotate so as not to overload the immune system. Test again after several months to see what changes are made. I had one full page both sides that I could not eat. Over 6 years gained all back except I now eliminate white flour and milk.

    Vitamin Support:
    DHEA 25mg - (helps hormone levels)
    Garlic (immunie system and parasite control)
    Magnesium -- (200mg - 800 depends on person)
    Alpha Lipoic Acid (reserach amount, I take 250MG)
    Choline Inosotol -
    N Acetyle Cystene
    Same-E (I take 400Mgcirculation, reduces inflamation, depression)
    Ginko - 25mg
    Super Enzymes (mentioned above 1/2 hr before meal - antiviral)
    Acidopholis - (" immune support and digestions 8 millin/meal)
    Pantothenic acid
    Mega Antioxidant (multi-vitamin)
    Mineral complex (multi)
    Omega 3 Fatty Acids (helps immune, inflamation, other, etc)
    MSM (I take 100MG)
    L Carnatine (I just started, 500Mg -- helps mitochondria)
    Co-Q10 (mitochondria - try levels, I take 100mg now, was taking 25mg)
    L Methionine (new to me - for energy in cells)
    Niaciniamide (new to me -for energy to cells)

    Vitamin C (high doses -- fights infection/detox - - I take 6000 mg / day, I am detoxing. I'll drop back to 3000mg later)
    Echinacia -- immunity agains virus and other

    Kelp --- food/nutrient -- helps detoxing too
    Chlorophyll -- for detoxing (I have high mercury levels)

    Your daughter may not need all of theses, but I've listed them to help pull some of the megainformation you'll read about together.

    FOOD:
    learn how to juice from organic fruits and vegestables to allow body to digest and take in nutrients naturally.

    Cook very limited - on stove (not microwave), and use organic as much as possible...lots of veges.

    Note: I struggled for this last year to recover after coming back from the clinic and doing too much! I am now trying to create a job for myself where I work only 30 hours per week, and NO MORE.....I am steadfast with this now - because I understand I cannot push -- and I will be FAR less able (even sick, disabled, or contemplating a dire future if I don't). I didn't reach this decision easily. It means giving up my work as an independent financial advisor. However, I'd rather have benefits, steady income and a 401k -- plus an employer who understands...Tricky to do - - but imperative.

    Encourage your daugther to focus on rest and recovery first. Then, she can test her body's strenth with small contracts as she get's stronger. If she can heal over months or a couple years, she may be at a place to grow her confidence in her body to know her levels too. It takes time to know these.

    Note: I have never stopped working -- although with my private practice I did limit it to about 20 productive hours / week this last year. She is not alone. Being kind to herself about this is the best way. It's hard - but the only way to build a reasonable life.

    Best wishes! and Prayers!

    Mkate
  11. MKate

    MKate New Member

    HI again -

    I forgot to mention some other "STAPLES"...

    As your daughter gets stronger, let her experiement with the following -- and develop her own paceing with each.

    Weekly -- whether taking one day or stretching each activity out 1/day (whatever she can do)....I've built up to where I try to take ONE or Two days for my own Home Spa Days:

    Juicing all day or weekend (to detox and lighten load to digestive tract)

    Toxin Mud Baths -- remove heavy metals or general detox (search on the web for good detox mud bath products)

    Full Body Massage -- removes toxins and supports the lymph nodes to remove toxins. Make sure it is lymph massage - and depending on her tolerance and body -- deep tissue might be needed as well. the toxins can be held very tightly inside the deep tissues of the muscles. With other toxin removal steps mentioned, this regular massage will help move them out of the lymph and provide her releif and increase oxygen to the cells. Add as she is feeling stronger -- schedule according to her strength. She may need to start with once / month and work up to more as her fatigue lessens.

    Daily -- or as often as I can:
    Chi Machine in a.m. (5 -15 minutes)Lying on the floor, place feet in the cradle of the Chi Machine --- allow the machine to gently move the legs back and forth. This helps circulation and improves oxygen flow. Great for those who are so fatigues that walking is out of the question....Also good support for those who can do more movement, but want to improve oxygen. I do it as often as I can.

    Look for machine on website of Sanoviv Clinic. They may list a phone number to call. I don't know other places to get one - but you might find them. Love it!

    Mini Tramp/Daily (when she can get up) Jump on mini tramp 1-5 minutes or whatever she can tolerate...Simple, quick, not tiring...to her level.

    Detox --- see if naturopathic could test her for toxicity levels of heavy metals...if not see about testing you can order -- or look for tests that you could have regular physician's do.....Mine was at the clinic I mentioned..

    Mercury -- removed my metal fillings (should have done it 14 years ago! Didn't beleive them then, did it this year)
    You might wait until she is stronger to do that, but removing toxins through mud baths, massages, and detox colon cleansers can help strengthen her body now -- for more indepth processes later when she's stronger.

    I'll send more, If I've forgotten anything.

    doctor can rule out: Thyroid, low TSH.....that's help towards diagnosis of CFS for disability....

    However, all of the other issues I have done without physician support (important if you are in an area where no doctor really understands or knows about it ---) This way she can relax and focus on her own health....and perhaps not destroy her medical coverage anyway.

    I hope this helps.

    mkate
  12. MKate

    MKate New Member

    HI --
    thanks for sharing your doctor's website. I'm intrigued - very much!

    If you don't mind - how old are you and how did you onset come on? How long did it last, etc.....

    I'm curious because I'm 46 -- hit with it after Mono 14 years ago -- but it took 2 years for my decline after mono so I'm not sure what all it is......

    Perhaps there's real hope with antivirals.

    Let me know....Further -- the mother who's thread this is --we're all here to share and there's lots of room for individual differences. Lot's of hope. I'm thoroughly convinced that with more study we're going to find results -- there's hope!

    Kate
  13. greeneyeslk

    greeneyeslk New Member

  14. novitality

    novitality New Member

    I am sorry. No easy answers. I lost my job due to Fibro. There were so many months when I went to work and it took all I had to make it, but my performance was rapidly taking a plunge and I'd missed a lot of work.

    Then I got the diagnosis. It was hard, but good to have it called something. I was lucky. I got an excellent doctor who helped me with the whole process and made out the paperwork I needed to retire early.

    I have never crashed for so long. I tend to have crashes that come closer together, but don't last more than a week or so. But the next might come a week, or a month, or four monehts later.

    The thing is, over doing it is one of the worst things, in my expereince, that gets flares going.I am a part time university student, but it took me seven years (by the time I graduate this spring), to get through a four year program. Some days I can't go to class and my GPA does not reflect what I'm really able to do when I'm feeling my best.

    It is crucial that one learns their limit and sticks to it. It is so hard for many of us to say no, or to refuse more hours at work or another project, because we feel we ought to be able to do it, but we can't. I'm still falling for this at times, and when I do I pay.

    Last but not least, cut out the stress. If she works in the library becasue it is low stress, so be it. Forget things that put the pressure on in any form.

    I hope this helps some. Your daughter is lucky to have you in her life. But take care of yourself too!
  15. Perrier

    Perrier New Member

    I thank you all for your kindness. I will certainly take heed with your suggetions. Does anyone know of Dr. Holtorf? Any comments.

    My daughter had her first CFS collapse in May of 2002, and this shredded her life entirely; she had just obtained a job and couldn't accept it; she had just graduated from university; and so we struggled through the illness and followed various protocols, and she had many IVs, as well, and was on antifungals, etc., She did improve, and so wanted to have a bit of life. She just couldn't sustain the insane pace at the workplace; and they knew she had a condition, for we had obtained two letters from physicians. The director was a work maniac. Anyone ever see the I love Lucy show where she decides to get a job and ends up in Chocolate factory, and the conveyor belt starts to go faster and faster and then she goes ballistic eventually. Well, that's how it was. What I do not understand, is why the crash made her go down so far. She is basically in the same pit she was in in 2002. She worked at this crazy pace for 8 weeks. That was all. Prior to that she worked at a normal pace for 8 months and she seemed fine. She is now without relief; constant malaise, or toxic feeling, or weakness, and now the gut problems, which we had eradicated, have resurfaced. It's as if we never went through the past five years! I do not know what to do for her; she gets a massage once a week, someone comes to our house because my daughter is housebound. I must say that I find it very troubling and somewhat barbaric that funding has not gone much more for this illness, for many many talented young people are ripped out of the economy. Aids research went into full swing; but the research here is not swift at all. Anyhow, I thank all of you for your assistance, and I will try to read your posts and implement your suggestions.
  16. Dee50

    Dee50 New Member

    for me the crashes or relapses have become longer and harder with age. I don't bounce back as I did when I was younger 20's and 30's. I hope your daughter is better soon, it does seem to be a waiting game for many of us. Time for our bodies to prayfully recharge themselves-or something like that.
    Dee