Are we better off now than 10 yrs. ago?

Discussion in 'Fibromyalgia Main Forum' started by mrpain, May 31, 2006.

  1. mrpain

    mrpain New Member

    This is not a statement or a question "For" anything, or "Against" anything.... it is just an observation followed by a question.

    I've had fibro & cfs for many many years! I was just calculating all the money I've spent just this year on supplements and vitamins. Then if you multiply that by the years, well you know the outcome.

    But it's really not the money I'm talking about.. It's all the stuff I've taken over the years which not only includes supplements & vitamins, but all the medications that has been prescribed.

    Now you take all that, and include the doctor visits, the chiropractic visits, plus the hot tubs, jacuzzi, and accupunture; the back rubs, the resting, and maybe even the phyciatrist, and where are we NOW?

    (This is my question).. I'm really no better than I was before I started this journey, and to be honest, I'm a lot worse... so is there anyone who has actually improved over time because of what you took, or did to get better??

    I'm not talking about cycles of getting better, because we all go thru that. I went thru cycles in the very beginning of this illness when I wasn't taking or doing anything.
    Are we wasting our money and effort if nothing really changes? I guess I'm discourage because I don't see any difference before I started, than I do now.. I'm in the same place but only worse, and my pain is unbelievable tonight. Any advice or comments?
    [This Message was Edited on 05/31/2006]
    [This Message was Edited on 05/31/2006]
    [This Message was Edited on 06/01/2006]
  2. diva42597

    diva42597 New Member

    I've had fibro for 6 years and have made real progress. For me the key was finding the right treatment and treating the illness, not the symptoms. Six years ago I could barely walk, had to leave a career because of the stress of the disease and was completely miserable. For me a big part of my rehabilitation was seeking chiropractic care. I am a huge advocate and it has done wonders for me. My mother has fibro also, and she is far too sensitive for it to work. I am fortunate to have youth on my side. Another key for me has been to get off the pain meds as much as possible. I found that the symptoms were far worse than the bennefits. I weaned myself off them slowly and now I use exercise, diet, heat and cold packs to alleviate my pain. I do have pain every single day and I do go through lots of bad spells. I'm NOT cured, but I have the hope that someday I will be. No there is no "cure" but believing there is leads to a positive attitude. That's a necessity in living with fibro in my opinion. It will get better Mr Pain. My prayers will be with you!

    Kristen
  3. mamie43

    mamie43 Member

    I hear you loud and clear! My symptoms began when I was 15 and I am now 46.
    I had more good times than bad. I was very happy, hopeful and active. My pain was a lot easier to tolerate, less intense than what it is now. I didn't need much sleep either.

    As the years went by, I began to have more symptoms. But, I told everyone that I would beat this D.D. I tried anything and everything that I thought would help me, to no avail.
    I tried Guaifenesin, Sam-E, Gano Coffee and Tea, Crystals, etc again, nothing worked. I've been ingesting vitamins, minerals and herbs for over 20 years.

    I have always exercised and even trained some friends. Until almost 3 years ago, when the exhaustion set in, my energy ran out.......relentlessly nagging and torturing me daily and with excruciating pain to go with it. I could no longer go to the gym, or speed walk, or weight train. I can barely drag my carcass around to prepare a meal. My life as I knew it, as I lived it fully, was no longer in me.

    Its all gone and I barely have the energy to walk from one end of my house to the other. After my shower, I find myself
    finished for the rest of the day; I'm in a full blown flare.
    I went from having a spotless home, to living with more dust and dirt and more of a mess. I had the positive outlook for at least 25 years. But, I have a limit and so does everyone else on the planet.

    I haven't given up trying to make my life more livable. I've decided to take better care of myself and to stop pushing too hard. I've pushed myself hard and I found myself only getting sicker. Its time I give my body a rest.
    Remission would be wonderful about now!

    Gentle hugs,
    Mamie43
  4. hugs4evry1

    hugs4evry1 New Member

    Because I've just started ordering the expensive vitamins and supplements from the Prohealth store.

    And I just started down this path because I don't know what else to do. I'm still trying to beat this almost 2 year flare, my husband is going downhill quickly and I wonder how much longer he'll be able to work since he got sick last year and to top that off, my daughter lives with us again! (Stress, stress and more stress)

    I think we take these paths because a part of us will never give up hope for at least a long remission while waiting for modern medicine to find some answers to get us a cure. (I won't hold my breath)

    I've changed my diet a bit, stopped aspartame, stopped smoking so what else can I do....I think it's just instinct that we HAVE to try to do SOMETHING.

    Nancy B
  5. sisland

    sisland New Member

    Let's just say i've taught myself how to live with this DD. there's too much depth to go into it!...........................goodluck to all of us!!
  6. Shannonsparkles

    Shannonsparkles New Member

    Ten years ago, I was 14. I was sick constantly, and though I was still able to go to school, I had no energy for much else. I've been housebound and mostly bedridden for six years. The disease seems to get worse every year, though my symptoms are slightly less severe in warm weather. So, for me, I'm doing much worse. I take suppliments, and I know some of them help. I don't know if there will be a way out of this disease for me though. Well, another 50 years, tops, I tell myself.

    I'm especially discouraged these past two weeks because my body's still scrambled from my last appointment, and I am awake during the night instead of during the day. The only time I feel well is in my dreams. Rest is the only sure thing that helps me. If I don't overdo (this year that has included cutting out most bathing and nearly all cooking), I feel less sick than I would otherwise.

    Are we wasting our efforts if nothing changes?

    For me, continuing to struggle for help has given me a sense of competancy. Even if nothing comes of it, seeing myself fight so hard makes me feel better about who I am, and it holds off feelings of helplessness that can overwhelm me at times. When all my resources are gone and I don't know what to do, I can still cry. That's fighting too.
    (( )) Shannon
    [This Message was Edited on 06/02/2006]
  7. matthewson

    matthewson New Member

    The common thread I see running through this post is that the people who seem to be doing better are the people who have learned to adapt to these DD. Pacing is something that I really found hard to do at first, but now it is becoming much easier for me.

    I absolutely can not go go go 16 hours a day like I used to. I can do stuff in little chunks of time and then I sit. I have started reading more now and am enjoying it! That is something I haven't had time for in over 30 years! I also joined a shawl ministry at church and when I am not reading, I crochet. I have to keep busy somehow.

    I can't begin to understand CFS as I only have FMS, but I have also found a good Dr. who has gotten my pain pretty much under control. He actually believes in FMS/CFS and is willing to work with me to find the right meds for me.

    Supplements? Well, I take a few and actually find that magnesium and ZMA which I order from here are the only ones I have found that seem to do something for me.

    I am so sorry you are going through a rough time right now. Could it just be that you are in a flare? I know that when I flare, nothing in the world looks right to me and I get depressed. But, when I come out of it, I feel better about things. I hope you can find some peace with this.

    This is not the life we would have chosen for ourselves, but it is the life we have been dealt, so we have to try to make the best of it.

    Take care, Sally

  8. Marta608

    Marta608 Member

    Physically, no. I'm not better, I'm worse. As I stopped doing things thinking that less activity would help me heal, I became unable to do them again. A lesson there for the newly diagnosed.

    But I sense more to your question and more to the answers posted here so far. While I'm not healthier - plus I'm often lonely and certainly not able to do many things I'd like to do - I do know that I'm a survivor. I can get knocked down and get back up again, over and over if necessary. What's good about that? you ask. Sounds kinda dumb.

    Well, you see, it's about finding out that I can handle much more than I ever thought I could and, at the same time, that I can manage do things for myself that I used to depend on someone else to do. To me, that's big.

    Because I'm not racing to this meeting and that, I also now take time, because I have to, to appreciate the little things that surround me every day. I find joy in those things, in Being rather than in Doing.

    And lest this sound too Pollyanna, all you have to do is read some of my recent, anxiety-filled posts to know that it's often very hard to cope. But I am and that's worth something to me.

    I give us all a big but gentle pat on the back. Here's to finding it very hard but doing it anyway - and to never giving up.

    Thanks for the reminder.

    Marta

    Did I really write this in June?? Must have.
    [This Message was Edited on 07/12/2006]
  9. bluemoon1monday

    bluemoon1monday New Member

    I like to view myself as different and not compare to the live before DD. The hardest part for me in the way of moving forward was acceptance. That is to truly accept what I am now and really, really enjoy those small things that make up the millions of pieces in our lives.

    I found that relief from severe pain on daily basis, getting enough deep sleep, and exercise such as walking on regular basis has assisted me. Stress has to be removed has much as possible, it usually means we have to relearn how we think about events in our lives.

    Supplements, well I have tried alot. GABA is one that definitely helps me. Garlic and magnesium are two more.

    I no longer walk with a cane. I am able to drive short distances. Unfortunately, I am not able to work due to other diseases I have. That is one of the complications of what works or not works on each of us, we may also carry the excess baggage of other diseases so that maybe what works for one may not work and even have adverse reactions for someone else.

    It's a long, long journey for most of us that have sustained improvement of our symptoms. Again, for me the most dramatic and sustained improvement has been from how I view that glass - half empty or half full.

    I wish all of us with these DD's a long lasting remission. I do not believe at this time there is a "cure."

    Bluemoon
  10. Bambi

    Bambi New Member

    miles a day rain or shine. I was cooking all the meals, washing all the dishes, keeping house and doing most of what was done for my pets. I would go on all day shopping (window shopping mostly) sprees, out to dinner and about anything I wanted to.

    I'd get brave and move heavy furniture and do too much and the FM as it was then would cause me to be down for a day and I'd recuperate and be back in the game.

    Then it got severe. For about two years I lived with frequent muscles spasms that felt like heart attacks , I spent most of my time curled up in a ball of pain crying, I couldn't sleep, everything I ate made me nauseated. I was depressed and on the verge of you know what.

    Then I just happened to get lucky with my "last try" doctor who diagnosed FM (others had but did nothing about it) and started medication for each symptom, then sent me to a pain specialist for a second opinion. He agreed. She moved and he took me on full time.

    For the next two or three years it was trial and error. I had already tried Chiro, Accupuncture, TENS, off label stuff like Neurontin etc, all the antidepressants (only Trazadone helps me sleep and has no side effects for me) though I haven't been depressed since treatment for pain started. But I did try PT and enough supplements to fill a large UHaul.

    I haven't now had to change my medications since 2003, I do moderate exercise every day, do many chores around the house (not like I used to but satisfactory to me), I share cooking and care of the pets with my husband and I feel in general pretty ok. I take; BComplex,Vitamin D, a multi,Milk Thistle,Magnesium, Calcium with zinc,Acidolphalus,Fish Oil,Olive
    Leaf Extract and Flaxseed Oil..along
    with my medications. I have no apparent side effects to any of it.

    I still have flares from time to time but they are ALWAYS directly related to too much STRESS..stormy weather ..heat(summer)..or not doing the exercise. They are short lived if I get my act together on the stress part, the storm passes, I stay out of the heat of summer and/or I do the exercise.

    My life is more isolated, more lonely and less busy than 10 years ago at times but all in all I'm grateful for every day. I hit 58 in March and am just glad of every time the sun comes up on a new day. I should add that I pray, meditate, do self hypnosis, heat and cold packs as needed..so the mind part is important too.
  11. mrpain

    mrpain New Member

    Everyone had great replies and it was helpful to read each one. I will take something away from everybody. I wish I could respond to each one but I'm not sure how many will come back to read it.

    In any case, thanks, and ya'll sure have given me something to think about. I like where marta said, she found joy "just being", instead of "just doing". Thanks to all, and I believe I was also able to read between the lines and feel the heart also..
  12. victoria

    victoria New Member

    what immediately occurred to me was the question --

    If I hadn't done all what I've done over the past 35 years of ups and downs, would I be doing far worse than I am now?

    I understand the discouragement... for me, heaped on top of thoughts of all the money spent on doctors, supplements etc plus the self-discipline of following candida diet etc.,

    --are the lost opportunities and the money lost on endeavors I could not follow thru with. In the end that is what really depresses me, when I let it.

    I do truly think tho, in the final analysis for me, that I'd probably be worse off...

    but I guess this is an unanswerable question.

    all the best,
    Victoria

  13. mariee

    mariee Member

    Thanks for this question, mrpain...

    Ten years ago, I was healthy, raising two teens, and loving my teaching job.

    Seven years ago, I came down w. some virus...that left me w.out the use of my hand and debilitating pain, and fatigue.

    I tried...anti-d's, opiods, anti-inflamatories, accupuncture, Physical therapy, steriod treatment (including infusions), anti-anxiety meds, biofeedback...etc.

    All this kept me "busy" while my body began to heal. And I did get better. Now the hard part for me...I have plateaued. I am left w. daily pain, fatigue.
    For the past year, I have been tapering off all meds (side effects outweighed the benefits), and now am learning to pace myself...not overdo, then crash.

    I am lonely. I do miss my old self..my old life. I haven't given up hope that I will be even better someday...I need to practice being grateful for having this much improvement.

    Blessings
    Mariee

  14. ANNXYZ

    ANNXYZ New Member

    Most of us can feel with you . I have worked vigilantly to improve, and yet this illness is still in my face ten years later .

    One thing that has been brought to light in my case is that I have lyme disease , which was almost hard to believe . I was tested by IGENEX labs , which is reliable and MUCH more accurate than the tests I was given earlier in the illness . I am now on ABX , and it is not an easy road . I am not sure that a CURE is possible- I just hope for improvement .

    I hope like I do not sound like a broken record , but considering the misery and length of your suffeering , you might want to investigate an Igenex test . In the past year , MANY people diagnosed w/ CFIDS FM have found they actually have lyme disease . If there is any way possible to get a test , it would at least rule out WHAT you do not have . In my case , supplements alone would NEVER cure a bacterial infection hiding in my white cells .

    I am a firm believer that the supplements and attention to nutrition have made a difference for me. One doctor told me that the reason I was up walking ( after seeing bloood work ) was the supplements .

    Like you , I am sick of being sick. I have a battle that goes on in my mind all of the time . I personally have to ask God to constantlyhelp me have a good outlook , as I often do not feel useful .

    When I started out ten years ago , I was often confined to bed for long periods of time . I also used to have nasty nerve pain. On top of that I would throw up for no reason frequently . Most of these issues are PAST , so I have improved a degree . Improvement is possible.


    I have known so many people who literally found something ( usually odd ) that brought them back to wellness and out of pain . It does happen . Some of the folks I know had been ill FOR YEARS . I will list some of the things they believe helped them turn the corner :

    preachers' wife - trazadone , spirulina GREAT nutrition

    missionary family - KM potassium supplement

    older retired lady ( 70) effexor

    young mother - rest and kutapresssin

    several others - ambrotose glyconutrients

    two sisters w/ FM CFIDS - Reliv vitamin product

    These people found a key to restore their health .
    It does not seem to make sense that so many different things could make a difference , but it appears to be true .

    I keep asking God to show me everything I can do to help myself . Today I will ask that for you , that you find something that improves your health and life .
  15. lenasvn

    lenasvn New Member

    Everyone said great things. One little thing comes to mind in my case.

    My TOLERANCE for "doing" have decreased, and I think it's as simple as aging physique and the wear and tear of pregnancies.



  16. mrpain

    mrpain New Member

    Thanks annxyz for your prayers. I guess bottom line is to never give up. You talked about different ones finding what seems to help them, but that's what is frustrating. For over 20 years I have been searching and it seems like I've tried a ton of things.

    I wish I could find that something that would be a great help like the ones you mentioned... I know I still have a ton more of other things still to try yet. Maybe it will be in them.. How do you get tested for lymes from a good reliable lab. Igenex has been mentioned before but they are not near where I live..Is there someone else who is comparable?
  17. jole

    jole Member

    I have asked myself the same question many times. I really don't have the money to spend, and enjoy reading what works for others so I don't feel I'm wasting my time and money. But as yet I have to find the "one" thing to make a differnce.

    Yes, my pain is a little less because of pain meds, but it is still there, watching the clock to increase as the meds decrease in my system. The fog continues to make a fool of me on a fairly consistent basis. I either don't sleep or I can't wake up. My body is weak and uncoordinated many days. None of this has changed.

    I miss the old "me" so much, but have to admit I am getting more use to this "me" after 4 years of hell. I have learned to pace for the most part, not because I want to but because it's not an option any more. I too am lonely for friends and good evening conversation, but the energy for them isn't there any more.

    The only change I have seen is the acceptance of the whole thing, and that comes from inside, not from meds, docs, tests, or supplements. I can't afford to keep taking that route and have come to terms with the fact that so long as I have this board, I bet when a cure happens, all you good people will let me know!!!!!!!

    Frends - Jole
  18. mrpain

    mrpain New Member

    How was accupuncture for you. Did it help any? I was going to give that a try for the first time and that doc also knows about Wilson's temperature syndrome. My temp is usually 96.8 instead of 98.6.....................
  19. mariee

    mariee Member

    When I went for accupuncture, it actually worsened my symptoms. But this was early on in my illness, and even taking a shower worsened my symptoms.
    I met another accupuncturist (who gave the most healing massages in my PT experience) who told me the treatment I was given could have been too aggresive for me. She did not understand FM.
    I am willing to try it again.
    Keep us informed as you give it a try.
    Mariee
  20. ANNXYZ

    ANNXYZ New Member

    I have tried many things also . I take SOOOO many supplements . I am not well, but I think I would be worse
    if I became careless . In fact , I was moving across
    country and threw my ritual to the wind for a few weeks . I got a severe chest infection , had to be on steroids and felt so sick as though I would jump out of my skin ( pins and needles feeling ) . After getting back on track , I am at baseline and have no "EXTRA" infections ( except lyme ) .

    Your doctor can order an Igenex test . Mr Pain, I would tell my doctor firmly to order it . Igenex has a website and a phone number . you can give the info to the doc .
    The test is 250 $ . I do not want to paint a rosy picture of treating lyme , but if you have it and do not treat it , you are just spinning your wheels entirely . Most of the lyme tests done in the past are worthless .

    For more info go to ILADS the lyme disease site and you will find that the symptoms for lyme are VIRTUALLY indistinguishable from CFIDS / FM . Many here are being found infected w/ lyme . Jarjar is another man who was ill and has recently been diagnosed w/ lyme after years of sickness. He is making progress that is an encouragement to me .

    Do not mistake me to say that all here have lyme , but you would be surprised how many are finding out that their CFIDS / FM is lyme .

    If you get an Igenex test and have TWO positive bands , it is likely that lyme is holding you back from recovery despite your best efforts .

    No matter , I will say a prayer that you are led to something helpful and encouraging . Bless you !