Not seeking a cure...

Discussion in 'Fibromyalgia Main Forum' started by azbubba, Aug 27, 2006.

  1. azbubba

    azbubba New Member

    I wanted to ask a bit about where I am at with this illness (FM).

    Before being dxd with FM, I went through about 1 year of medical tests, including CT scans with dye (where I found out I was allergic to the dye), nuclear med scans, up to 13 vials of blood tests at one time, etc., etc. You all know what I'm talking about.

    So, I got my DX in June from my rheumy. Anyhoo, after all of the tests, and the usual stuff that you all know and love so well from friends, family, and the like...I am just too tired to look for a cure, or outside sources to manage what I feel.

    To explain, since my dx, I've had everyone in the world telling me what I should do, including exercise, diet, acupuncture, chiropractic, and God knows what else. The research I've done seems to indicate that there isn't one cure-all for everyone. Something that might work for one FM patient won't work for others, etc. And to be perfectly honest, I am not prepared to go on a search for expensive and exhausting ways to manage what I feel on a daily basis.

    I find that I have just about enough strength to make it thru the week at work, and sometimes I need a day off just to do that. Which, to me, means I don't have the energy or extra money to see a nutritionist, chiropractor, or whatever my friends think I should see this week.

    This doesn't mean that I don't want to get better. I don't enjoy having this dd, or like the attention it brings. It just means I don't want to waste time on something that may not work.

    I guess the question is...has anyone else went through this? Is it temporary? How did you get past this?

    Thanks for listening.

    PS: Sorry if this post rambles a bit. I have a pretty big headache right I guess I'll blame it on that.
  2. eeyoreblue02

    eeyoreblue02 Member

    I'm sure it's temporary. We all hear the different bits of advice from others -- lose weight, exercise more, rest more, if you think you are sick you will be sick (my favorite).

    I personally have chosen the natural supplement route and have found a doctor who believes in that also. It's not easy and it's not cheap, but it's better than letting the disease ruin my life.

    Hang in there. Plenty of us have thought about giving up.

  3. Shannonsparkles

    Shannonsparkles New Member

    Remember the boy who cried wolf? That was every doctor I ever had. "You'll get better! You'll get better!" they'd say. I wonder if something has eaten them by now? ;) lol

    Serriously though, gotta give them credit for trying!

    I don't expect a cure now either. In fact, I've made a personal rule not to ask a doctor if they think their latest idea will place me in recovery. I don't want to hear it. I can't bear the dissappointment again. If I get better, I get better. I don't mind if it takes me by surprise!

    So I go anyway. I ask anyway. I try new people anyway. I use things I haven't used before. I keep searching for that wildcard. I don't count on it working. But it makes me feel better to try. It breaks up the monotony. And I get to meet lots of new people (doctors!).

    Deffinately, if something goes beyond your means, emotionally, physically, financially, it's fine to hold off for now. Don't gamble with more than you can afford to lose, believe me. I've paid the "dummy tax", as I call it, more than once. I like to believe that this disease seasons you. I like to suppose that I will be suckered less and less as time goes by.

    Something I have learned is to use the best doctors available. Anyone else, and you're wasting your energy. One visit to a really good doctor is worth a zillion visits to a so-so doctor.

    You sound smart. And not BORING at all! (Time to edit that bio, Bubba! lol)I look forward to hearing more about how the quest goes. Can you work? Are you pretty happy with stuff as is?

    For me, I've found it to be worthwhile to keep taking chances on the next thing, and to use the best doctors I can get. I just don't wrap my whole heart up in it.

    ((pat on the back)) Shannon
  4. Shannonsparkles

    Shannonsparkles New Member

    This is a little mental trick I use that seems to help.

    "Cure" is an all-or-nothing word.

    My goal is symptom improvement. That's reasonable. Sometimes I get it too. :)

    There are also some simple self-care things you can do that are low cost and don't require doctors. Things like diet, vitamins, magnesium, detox baths, relaxation, etc. Whatever works for you.

    Hang in there.
    (( )) Shannon

    [This Message was Edited on 08/28/2006]
  5. Suzan

    Suzan New Member

    I have made the choice to "ignore" all the "instant cures" that seem to abound with FMS. That is not to say that I don't try to stay informed about the information surrounding the illness...but I don't have the time , energy , or money to be a guinea pig for a "cure". I accept the fact that I have a chronic illness...I do take some pain meds to help me control the pain issues I have...I have the luxury of not working outside the I rest when I can...I do gentle exercising every day I can manage it...and I try to keep up some social contacts so I don't feel too isolated. I am lucky to have a supportive husband...and great grown kids...and a few wonderful friends that don't roll their eyes when I say I can't do something.

    I would LOVE to see research figure out WHY we have this ...and then they would have a much easier time figuring out what to do about it...till then...I am very cautious about jumping on anyones bandwagon...from removing taking prescription drugs...from acupuncture....I will just take care of myself as best as I can with minimal outside interference...Until SOMEONE can say...Eureka...THIS is where FMS comes from!
  6. CockatooMom

    CockatooMom New Member

    Like someone else said, that is a choice. I just do my best to get through each day doing what works for ME.

    Stretching, exercise, and trying to get GOOD sleep are my number one priorities.

    I can't afford the supplements either, but I do go to a chiropractor once a month ($35).

    I would LOVE to have a weekly massage, but have found no volunteers. My husband won't even rub my feet anymore.

    So we just keep plugging away, doing the best we can to lead a fullfilling life.

    And we have eachother!

    Take care!

  7. matthewson

    matthewson New Member

    Not looking for a cure, just looking at being able to live and function with this. With meds, life is tolerable and even enjoyable albeit in a different way.

    More breaks and less running around. Able to enjoy the moment where as before I was too busy. Sometimes it is best not to fight something and just try to live the best way you can. If a cure comes, well that would be great, but until then, I want to live as fully as I can with my limitations.

    Take care, Sally
  8. azbubba

    azbubba New Member

    Thanks to all who replied that let me know I wasn't losing it. I <u>do</u> try to manage the best life possible, but those who don't understand have different ways of expressing disbelief that I don't keep seeing doctors until someone can give me a definitive cure.

    Hugs to you all...
  9. azbubba

    azbubba New Member

    Forgot to answer your questions.

    I am able to work, for the most part. Every now and then, I take a day off, and I'm fortunate enough that it's still paid time off (for the time being).

    Probably the other part to me not looking for a cure is that I try to be truly content with my life as-is. I try and focus on the fact that many people (including a lot of you folks here) have it much worse than I do, and my faith has a lot to do with trying to be content. Sometimes that gets maddening though...especially when I'm putting on my happy face during a particularly hard day, and someone comes up to me and says "I didn't even know you were sick!"

    Anyhoo, thanks for your encouraging posts...and I'll try to keep updating on here. I probably post a bit more to my blog than here...and if you're really bored I have the link in my profile.

    Thanks again... :)

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