This is ALL So Overwhelming!!!

Discussion in 'Fibromyalgia Main Forum' started by cressida, Nov 19, 2008.

  1. cressida

    cressida New Member

    I have a great doctor, but regardless - there is no question that we are guinea pigs. Each of us suffer the pain and flares and all the little 'extras' that go with this DD, but all of us are just that much different or suffering certain insufficiencies that others may not be and therefore ...

    Not only do we spend YEARS trying to find what works for US, but what helps us may not even necessarily help someone else who may be dealing with something slighly different. Our physicians have to try numerous supplements, antibiotics, painkillers, antivirals, etc. on us to see if they may work.


    Hmmm - do we try the Guai protocol OR do we work on our thyroid and adrenals, or do we take painkillers, or do we concentrate on supplements or do we try chelating heavy metals, or antidepressants and sleeping aids or do we focus on enzymes or do we (fill in the blank)???

    I'm so crazy over what to do that it drives me insane. I've tried SO many things and with fibrofog, I sometimes become confused about what I should even be doing. if I'm lucky enough to have a good day - I'm wondering what the heck I may have done (if anything) to bring it about. I've spent thousands of dollars on treatments, supplements, beds and mattress toppers, massaging equipment, etc.

    Some things seem to help - some don't seem to make a difference. Some have side effects that seem worse than the normal pain and discomfort.

    This is a full time job and we're the guinea pigs, trying to discover something that just simply works for all of us so we can put this behind us once and for all and live a normal life again. I don't know how anyone can work when they're trying to maintain all of this, just to try to feel half decent a quarter of the time. It IS overwhelming! I just wish some days that I'd wake up and it would be all over ...
  2. 3gs

    3gs New Member

    I unfornately couldn't have said it better.

    I feel like I live(HA!) on a rollercoaster.

    I feel like I woke up in the Twilight Zone!

    It's enough to drive you nuts.
  3. cressida

    cressida New Member

    And I wonder - HOW does anyone get anything done? I try so hard to keep ahead of the game, but when a flare comes up I get SO far behind that I can't catch up. I wish I had a little instruction book to follow, so I would be able to maintain some kind of schedule, regardless of the pain or obstruction. It just seems impossible to follow a routine when you have so many things to do, so I can't even maintain my supplement routine sometimes. What a Catch 22 this is!!!

    Wonder if anyone has any ideas on how to simplify this complicated situation???
  4. Empower

    Empower New Member

    It IS overwhelming, and I become very confused

    I tried the adrenal/thyroid treatment and it actually made me worse

    Tried supplements - did nothing

    Tried anti-depressants - worked a little, but many side effects

    I MAY try the guai protocol

    I TOTALLY understand, I could just cry
  5. pawneeem

    pawneeem New Member

    I understand. I have been dealing with this for 10 years and still have no answers.
    I am not sure there are answers.
    I am on antidepressants now and have terrible side effects.
    Which is worse?
    But lucky we have some good days!
    That's what I look forward to.
    Hang in there.
  6. tut90

    tut90 Member

    I'm tired of feeling this way, and trying out different medications and supplements, that upset my stomach so much and I don't have an idea of which one is causing the acid in my stomach. Sometimes, i just don't take the supplements, because my stomach can't take much anymore. Everyday is a different thing, something new in my body hurting me. I'm also tired of some people asking me how I'm doing, when I know they don't really care.

  7. SpecialK82

    SpecialK82 New Member

    I couldn't agree more - it can be very depressing. For people that feel as badly as us to have to use all the energy that we have to find doctors, research treatments, constantly figure and re-figure our finances to pay for long shots. And the worst is to have to convince doctors that we are sick, as well as friends and family around us.

    It feels like a cruel joke sometimes. Tut90 - I've had to stop taking my supps also because of upset stomach - I don't know what's causing it right now.

    It's enough to make me cry but I don't have the energy.

  8. findmind

    findmind New Member

    I stopped searching for the answers to this illness a long time ago. I have had Fm and ME/CFS for 18 years now, and nothing has cured me, that's for sure.

    The only thing I can say helped me are the meds my drs RX for specific symptoms: pain (gabapentin); sleep (Halcion and Xanax), levothyroxine, acupuncture almost cured the Fm.

    I do take Omega 3s for inflammations, Calciu with Vit D, and 500mg time release niacin (no hot flushes!), ultram for days of extra activity (holidays with family), and Provigil a couple of times a year when I really need to use my brain, and milk thistle for my liver.

    I do NOT mention ME/CFS to my drs; I only tell them a symptom or two at a time, get that checked out just to make sure there are no other things going on. I see dr. 2x per year, with a specific list of my concerns. I do not let him interrupt me or distract me. I follow MY script, not his. This works well for me.

    Symptoms are the only thing a dr. can treat, and that means decisions on your part as to how to take the meds; the rule for us is to start low and go slow, something drs. do not understand, so I do it on my own and tell them later, LOL.

    Don't be dismayed; lots of good researchers are on the trail; I don't think we'll have to wait much longer for answers.

    Those of you who are newbies and have had this for 1-5 years have a chance, with lots of sleep and rest, and no strenuous activity, to recover with your own immune systems which may not be as damaged as ours.

    Have hope...if I had been here for the past 10 years, I might have lost hope, but many here are getting better, if not cured, by specific modalities they have discovered by trial and error. They are usually the ones who have the money to be able to do this. If you don't, the best you can do is take very good care of yourself until more is researched and a treatment found.

    Have holds you up, helps you cope, and ultimately changes your worldview in a manner you would not believe. We are all one; if you suffer, so do I, and vice versa. We have each other, and I feel this group of people are my hope and lifeline to living, even with this dreadful disease.

    Have hope..prepare for the worst and prepare for the best.

    Do not worry about how much you get accomplished on a daily basis; over time, you can fulfill your duties slowly but surely. Do not pressure yourselves; this will lead to even more stress upon your ailing bodies and brains. Live for now, not for the old time rules of workplaces and production quotas. You are valuable and have a place in theis world if you would only try to find calmness and serenity in the storm. Distract yourself from the pain in any way you can; organizing your meds and supplements is easy with a "lazy susan" to hold them, and a weekly pillcase to hold them by am., noon, dinner, and bedtime. It's easy.

    Hoping and coping; that's my motto. What's yours? Try to find one that fits easily into your heart and mind, ok?

    Wishing you serenity in the face of all that comes your way...

  9. doxygirl

    doxygirl New Member

    to get better!

    That is why we keep looking and trying!

    If we did not want to get better we would not put forth the efforts, almost every documentary or movie I have watched in reference to this dd talks about all of the different things we all try ...........

    For me in the beginning I kept looking for the perfect supplement or vitamin...I thought if I could just find something natural to take I could make myself get better!

    and over the years I have filled my medicine cabinet up with hundreds of bottles of different vitamins and minerals no avail!

    I also used to get my hopes up each and every time I saw anything or anybody saying that they were cured or on the trail....

    Now I still continue to keep my ear and eyes open but I stopped putting myself through the torture of getting my hopes up.....

    I listen carefully to my body and do what it wants....if Iam tired I rest...if I feel sick I rest more.....I respect this dd because I have learned if I do not it will let me know I have not!

    For me a regimine of pain medications is what works for me....exercise in moderation whenever I possibly can ( and by exercise I mean walking slowly)...I try to get out of the house even if it is only for 30 minutes a day just to keep from getting depressed....

    So...I do understand completly where you are coming from ....we are guinea pigs but I also agree like the other poster said there are people that know what they are doing on the trail...and with all of the people getting dx with this dd they had better get a move on it...

    as I once heard not too long ago this dd is now considered an epidemic!!!!!!!!!!!!!!

    [This Message was Edited on 11/22/2008]