Do we really have any control over this illness ?

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Mar 6, 2006.

  1. xchocoholic

    xchocoholic New Member

    I've been reading the posts here and I'm confused ...

    I've been disabled with this illness for 16 years. Housebound and bedridden at times. Now,I just suffer from flares or relapses. FM is mild. But,I'm still dealing with brain fog and fatigue every day.

    In the first year, I went on a special diet + supplements under the direction of a nutritionist who said he could cure me. But after 9 months, no cure, not even any improvement.

    I am trying the celiac + elimination diet at this time, but even though I do feel a little better, I am not convinced that this diet will cure me.

    I avoid supplements because my stomach doesn't tolerate much of anything right now and I have read where you really need to be careful with what you take because they can cause a whole new set of problems.

    Sleeping and getting plenty of rest is helping and always has. It was just never possible while my daughter was young.

    So do some people just get over this illness or appear to get over it because they didn't have it that bad to begin with ? I have high EBV (700), cytomeglia titers (400). Does this make a difference ?

    Thanks marcia

    [This Message was Edited on 03/06/2006]
    [This Message was Edited on 03/07/2006]
  2. xchocoholic

    xchocoholic New Member


    Thanks for replying and please do not take offense to what I am asking you, I am just trying to understand all this.

    Are you sure you have CFIDS ? Were you diagnosed by a specialist ?

    Aren't remissions, relapses and flares are unpredictable ?

    I have yet to see a solid connection between what I do and having a relapse or flare or going into remission. Post exhertional malaise yes, but that's it.

    In 2004, I had to evacuate 3 times in a row for all the hurricanes that hit Florida, but I never had a relapse. I had my gall bladder out in 2003, but did not have a relapse. But, I did have a relapse in 2005 when I became anemic from female problems (or just a coincidence ?).

    According to what I have read about alternative medicine, taking a variety of all the nutritional supplements on the market and eating a special diet would cure any illness.
    The explanations are so thick in medical terms that I really don't believe an expert could keep track. And these facts change daily based on new medical technology. Take phytochemicals, omegas, isoflavonoids ...

    Your story has been inspirational to a lot of people on this board, including me. And while I'm all for giving people hope, there are some who simply don't have the energy to follow a diet / supplement regime.

    For the first 3 or so years, I didn't have the stamina to stand up, much less watch what I ate. I was told that taking a good multi vitamin everyday, would be sufficient.

    Thanks for helping me out on this. I would like to believe that any of us can go into remission or be cured, but I'm looking for proof.

    Sincerely Marcia

    [This Message was Edited on 03/07/2006]
    [This Message was Edited on 03/07/2006]
  3. NyroFan

    NyroFan New Member

    In answer to your question about whether we have control over these diseases, my guess would be: No. I am also pretty much houseridden. It all seems like a setback, but it seems we all have to roll with the punches. I have a set routine I follow when it has a 'grip' on me and another routine when I have better days. Truthfully, there are more bad days than good.
    Regarding a nutritionist: I tried one and had no luck.
    I mix and match supplements sometimes, basically relying on the good information Stormyskye posts. It seems small amounts of some of the supplements will help. I am willing to try anything, but my doc said there is 'no cure'.
  4. xchocoholic

    xchocoholic New Member

    How long have you been sick ?

    I have more bad days than good too. But I have also redefined "Bad" and "good".

    For me good means I can take a shower and get out of the house all of the same day.

    And on a spectacular day, I can walk through the mall, store, etc. without getting brain fogged out. I hate it when my vision / brain stop working together while I am trying to walk through the mall.

    Thanks for your reply .. Marcia

  5. NyroFan

    NyroFan New Member

    In answer to your question, I have been really sick for the last six years. That was the real onset of the disease.
    I ached and pained my way to the diagnosis.

    I know what you mean by taking a shower and getting out of the house. I usually stay in and now shower every other day.
    I can not stand the bending, etc. I will also use products that pamper me. It seems to make the task less cumbersome.

    I can relate to you very well.
  6. xchocoholic

    xchocoholic New Member


    I am enjoying this board too. It helps me to bounce my ideas off other people right now.

    How long have you had this ? Did you have Fibro before you fell? I was in horrible pain for the first 2 - 3 years of this DD because I had been in 2 car accidents back to back the year prior to getting this DD.

    I tried Provigil and it did wonders for my fatigue and brain fog, but I couldn't fall asleep until about 4 am after taking it despite taking sleep meds. So my doctor took it away from me. LOL


    That's a good way of looking at it. That's what I have been doing. Being good to my body in the hopes that it will pay off.

    I'm just wondering if Stormy (and others) are right and that we can improve by taking supplements for detoxing, candida, etc.

    I know my diet is healthy, but I'm not up on all of the supplements. The info is overwhelming to me and I worry that I might do more harm than good.

    Thanks for helping out ... Marcia

  7. patches25

    patches25 New Member

    Recently on the Curezone website I read that the reason that vitamins are not given to children in these poverty countries is because parasites eat first and they would then overwhelm the childrens' systems.

    Could it be that we feed parasites too when we take supplements? I have done so much of the naturopathic stuff as well as so much on my own. And I really wonder about this.

    An interesting side note is that when cattle get parasites that only part of the herd will show signs of being sick. But the rancher will treat his whole herd. I have even wondered if we are like that part of the herd that feels sick from certain things.

    Personally I believe this disease is a combination of parasites, bacterias, and viruses. And that is why we are very much alike but can still have various amounts of this illness and various symptoms. Is it any wonder it is difficult to sort it all out?

    I hope you like this brainstorming and don't think I am just being a weirdo. Hugs to you all. E.
  8. xchocoholic

    xchocoholic New Member

    Thanks so much for responding. I am new to all this info on CFIDS and really appreciate the help.

    I changed my diet in July 2005 initially because my stomach was killing me 24/7 from food allergies / sensitivies. I'm fine now as long as I avoid my trigger foods.

    In researching what foods I should eat for nutritional purposes I started learning about alternative medicine.
    What a journey this has been.

    I am brain dead tonight, but wanted to thank you before signing off.

    Hugs ... Marcia
  9. ellikers

    ellikers New Member

    I do think that we can affect our illnesses. I believe that how much we are able to recover and feel better is based on a very complicated blend of what we are sick with exactly, what started it, where we live, what we eat and all the other factors that are too impossible to even to try to count.

    I have been diagnosed with CFIDS, and have many symptoms of Fibro (but don't completely fit the diagnostic criteria). My body was BEAT UP last year, from what I don't exactly know, but something triggered a cascade reaction that totally messed up my body, my mind and my life.

    I think we are all sick with slightly different things- because our bodies are all different, we all have different histories etc. Different things we try will have different effects on us- or even help or hurt us. I think even the diagnosis of CFIDS isn't the same for every person that has it- because we all get it slightly differently. And therefore, I think different things will help us.

    For me, I have started feeling better, thanks to a lot of help from a good practitioner, gradually increased exercise, anti-depressants to improve my sleep and decrease my problems with pain and lots of supplements and good food to give my body the nutrients it needs to stablize itself. I also am very young, and have been relatively healthy (aside from depression, anxiety and IBS) earlier in my life, so I think that helps my body to recover too.

    I think what started my illness was some weird combination between a mold and moisture problem in my house (I was breathing in mold that was growing on my bed without my knowledge every night for possibly several months) and a virus. My body freaked out and just became totally dysfunctional. And of course, hardly any medical people would listen to me or help- they just kept saying I had the flu, when in fact I was inthe beginning stages of CFIDS.

    I think we are exposed to a totally unknown number of chemicals and toxins to our bodies on a daily basis, and we don't know the full side effects and long term consequences no can we even count everything we come into contact with! (I just found out yesterday that herbicides that are very unhealthy and linked to numerous health problems have been sprayed outside my place of work for several years without my knowing it! This has got me thinking about everything else that affects my body everday that I don't even know about!).

    I think that all of the different things we come into contact can build up to affect us greatly. Kinda like Stormy was talking about: when we get further away from a natural state of being, our bodies will react negatively and trying to support our bodies with the things it needs will help us get better .... our bodies can freak out, and we don't necessarily know how or why but we can try to problem solve it and keep trying things and waiting and loving ourselves in order to give our bodies the best possible chance of balancing and healing!

    I do know of other people, besides myself, who have had CFS/CFIDS and have gotten better. At least two of the top of my head that live in my town alone. And they are majorly healthier, one is even in complete remission you might say.

    I do believe it is possible to get better. I think that I will always have a sensitive body, and that I need to be careful and listen to my intuition and how my body is doing so that I can take the best care of myself that I possibly can. But I do see a more healthy and functional future for myself, and as frustrating as it gets, I believe that we ALL have the possibility.

    Two books I reccommend: "Sick and Tired of Being Sick and Tired" and "Living Well With Chronic Fatigue Syndrome and Fibromyalgia." They are full of helpful information and support!!
  10. caperkat

    caperkat New Member

    Ggigi... if you have been through some testing, but not for Lyme yet, I definitely urge you to have that done. There are many overlapping symptoms and similarities, as with other illnesses. Lyme, I hear, can be treated with a series of antibiotics.
    Does anyone know how often someone should have tests run again, if at all? It's been 3 years since my dx, and sometimes I wonder if they missed something, or a newer or better test is out there.

  11. if you read any of my replies to others post,s that ive done in the past,you would think like i did myself,that i had control over my illness.but sadly im affraid that i dont now have control over it at all,and i was managing my illness so well.
    ive had severe depression lately,falling asleep again,and terrible muscle spasms and pain.i am still sticking to my bedtime routine of going to bed around about 8.30 pm and waking up at 5 am..but sadly it isnt helping just now.ive been very fatigued and tried hard to not get down to sleep or cat nap in the daytime,but this chronic fatigue is once again taking over,and i do have to get some daytime sleep id say..i might have got a bit big headed in thinking i had control over my fibromyalgia,because clearly i havent.

    kind regards
  12. ellikers

    ellikers New Member

    bumping up
  13. smiffy79

    smiffy79 New Member

    at the mo i am on a good balance of meds for me, i walk when i can with my dogs keep my house cleanish. i eat as good as poss through the week plenty of fruit and veg and practice hard at pacing.

    i train my dogs daily, work on the house and kids and study for my dog trainer training and attend a training group i am only able to do all this because i educated myself on these illnesses and so knew how best to combat them.

    if you want to see where im at now then look to my profile and click on 'um i need to speak up here'

    i could always struggle on with the morphine that was actually poisoning my body and no longer helping it, eat less healthily and not take excercise when i can so the weight then goes on, the ibs gets worse.

    with every pore of your body feeling clogged like that you would say no to your question. now im not saying this applys to all those who have said no at all but i do think that a large portion of ppl are waiting for the miracle drug when they can actually improve their quality of life for themselves. it wont cure the fm/m.e but you can make yourselves feel a lot better.

    from all my above statements - yeah we have an element of control.please read the post i said.

[ advertisement ]