Disturbing Info or am Ijust Naive??

Discussion in 'Fibromyalgia Main Forum' started by Member, Jul 16, 2003.

  1. Member

    Member New Member

    Hi everyone - recently I have been having more than usual flareups with more symptoms and more pain. I have had fMS/cfs/ibs for more than 12 years. I am now 64 years old and find that flareups are becoming more disabiling, even tho I REALLY try not to think that they might be getting worse. Today a friend told me about a couple who both have FMS, etc. and their teenage daughters have to wheel them both around in their wheelchairs. I am going to be relocating to a place where I think I'll be able to treat some of the symptoms with water aerobics, whirlpool baths and a guide to counsel me on how much and what kind fo excercise will help?? My goal is to build up my body (particularly) muscles, thinking that perhaps I can feel better this way?? IS THIS JUST WISHFUL THINKING?? (Its ok to be brutally honest here) Is it a fact that the more time a person has had these diseases, they DO continue to get worse, no matter what? Has anyone heard that eventually a person CAN wind up in a wheelchair, despite all of the help, counsel, this site, new ideas, new meds, New whatever is out there? I am sooooo glad that I can express the feelings, maybe for others as well, and that my real friends are out there. God Bless each and every one of you..........Member.........Pat
  2. dolsgirl

    dolsgirl New Member

    Pleae read my post: The Grostic Procedure for FMS, please read...dolsgirl
  3. klutzo

    klutzo New Member

    I consider exercise to be the second most important thing I did to improve my condition (after Xanx, without which I cannot even walk).
    I have NOT gotten worse. Sure, the illness has spread and caused new problems which are limiting, but the original problems (pain and fatigue) are much beter than they were, due to constant self-discipline regarding exercise, supplements, avoiding toxic people, pacing myself,etc.
    Water aerobics is where I started also, but rapidly became too fit for it to do any good, so I switched to walking, and then to dance aerobics. Then I added weights, a ski machine, and a treadmill. I developed degenerative disc disease where the original injury was, so the ski machine had to go. Now I have low back pain, probably because my stomach got so fat after menopause, and it looks like the treadmill will have to go since it's aggravating it, so it's back to walking and dance aerobics again. So, stick to it and just do what you can, while pushing just a teensy bit so you become stronger. Therabands are great and a lot safer than free weights. I use both and do more reps with less weight because of the fibro. If you get exhausted after exercise, grab a protein bar right afterwards. Be sure to take your magnesium at bedtime too!
    Good luck....within a couple of months from now you will be SO glad you did this!
  4. garyandkim

    garyandkim New Member

    We have had this for decades and for us with all the other dx's to have become worse over time. Gary had to leave work on disability and I stopped full time in 93 and part time in 98. But, what helps one may or maynot help another. So we keep trying what is new. Good luck with the move, Kim and Gary
  5. Shirl

    Shirl New Member

    To be truthful I had gotten worst as I got older, BUT in the last two years of changing life style, taking mangnesium, the ZMA for sleep (which I did not do for years, sleep), gentle exercise, moved where there is less stress, learned how to say 'no', got rid of 'toxic' people, and this board and loads of books and research I am at the least 80% better than I was say ten years ago.

    I have had this for more than 20 years, actually closer to 30 years (after reading this board, I realized I had FM way before I was diagnosed, but just though it was bad pain from my fast pace lifestyle), and have never been in a wheelchair, or even close to it.

    The flares have been less frequent, and the duration of them has decreased from weeks and months to days now.

    I am being very frank with you. I had the same fears you have right now. But I am now realizing that there is help for this, no, I am not cured by a longshot, but I do have a life that is worth living these days. The pain is way down from what it was.

    Two years ago, I was honestly just waiting to die, oh, I keep going, but I didn't think I would make it much longer.

    One of the most important things to control this illness is to control the stress in your life. That was one of my big problems. I moved way the heck out in the country, that was the beginning of my feeling that I might just make it.
    Then this board and all the information here that has helped me.

    I don't take any meds, I am so allergic to them, that I just get more problems with them than without. I tried that years ago. I take supplements, herbs, minerals,etc.

    I only take Xanax in the evening, it controls my 'racing' brain so that the ZMA can work for me to sleep.

    I do not have access to a pool or a hot tub, but from what I read here and elsewhere that is wonderful exercise for us.

    I hope this has helped to encourage you, and I am being truthful with you.

    I do have a life again, not like my old life, but we all have to change things as we get older, thats just life.

    So many of us just have to change that fast pace a little sooner so that we can feel good instead of fighting pain all the time.

    The exercise I do is walking on ground, no concrete, and I use a Nordic Track ski machine.

    Rest assured, you are going to be alright.

    By the way, I have three children, two teenage grandchildren none of them have any signs of FM......

    Shalom, Shirl
    [This Message was Edited on 07/16/2003]
  6. Chelz

    Chelz New Member

    Hi Pat!! It's hard to say with these conditons how it will affect you in the later years. I'm 38 with TMJ and FMS, and had it I think since I was 10. Yes, I do notice things getting more difficult, but I have improved in some areas as well. Last year my doctor sent me to physical therapy and water therapy, I had a chance to meet some WONDERFUL ladies and a few men who had FMS at the therapy sessions, they ranged in age from 25 to 65, some were walking with canes, some didn't have too much difficulty, and some needed to take frequent breaks. This conditon is so truly individual and hard to say what it will do to our bodies, we just have to keep thinking positive. Hugs, Chelz.
  7. Member

    Member New Member

    Hi Again - I've heard alot about ZMA but don't know what that is? Also, I'm taking Paxil in the evening. Is Xanax a comparable med? Thanks much.....Pat

    PS - hoping for a better day for all of us.....:)
  8. Mikie

    Mikie Moderator

    Paxil is in the family of SSRI antidepressants. Since our anxiety often stems from misfiring of the neurons in our brains, taking SSRI's can exacerbate our problems and cause damage to the brain in the long run. There is a very good article here by Dr. Paul Cheney in our library about SSRI's and stimulants and the damage they can do. Dr. Cheney is an expert in CFIDS, but this is one of the overlapping symptoms so the info is applicable to both.

    Xanax is in the family of benzodiazapines which tend to smooth out the neuron firing and calm the brain. Klonopin is another benzo which helps with anxiety, sleep, sensory overload, and muscle spasms and tics like RLS. Dr. Cheney believes calming the brain helps protect it from damage due to the misfiring of the nuerons.

    ZMA is a supplement sold here. It has magnesium, zinc, and vitamin B-6. It is very helpful in sleep and muscle repair and can be taken with medications.

    Love, Mikie
  9. pam_d

    pam_d New Member

    Dietary changes have done the most for me, because even though the FM's still there, I've been dealing with underlying issues that were definitely aggravating FM for me. In my case, I was tested thoroughly & found out I had food allergies I never guessed I had (didn't have any obvious symptoms, or what I THOUGHT were obvious symptoms). By changing my diet radically to exclude those foods (for me, dairy, gluten/wheat, soy, eggs) & then taking probiotics, digestive enzymes & other supplements to try to repair the damage years of eating allergenic foods has caused me, I'm feeling much better, have a lot more energy, and while my FM symptoms are not gone, they bother me a lot less.

    I am probably one of the few here that does not believe FM is necessarily a progressive illness-----but I DO believe a lot of us have SOME underlying factor or factors that, if left undiscovered, can make our FM symptoms feel worse & worse as the years pass. I certainly do NOT think everyone here has food allergies/leaky gut syndrome as an underlying perpetuating factor---but I think many of us have something that we haven't discovered yet that may be making things worse, such as hypercoagulation, systemic candida, thyroid, stealth infection, and the list goes on. These things are hard as heck to pin down, & we feel like we are clutching at straws as we try new things in an effort to feel better & to isolate what might be aggravating our FM. I discovered I had food allergies totally by accident! I went to a local allergist renowned for treating FM/CFS so that he'd test me for systemic candida---I was SURE that was the problem. Turned out, my candida testing came out pretty good, but my ELISA testing numbers on dairy & wheat, especially, were through the roof! And I never knew....so sometimes, we fall into this stuff by accident.

    That's why this board & what we learn here from others' experiences is so important! Had I not learned of systemic candida here, I'd have probably never pursued looking into that as a cause, which ultimately led to me learning of my food issues.

    Keep digging, Pat, keep reading & learning. I learn something new here at least every week, if not every day, maybe some new product or some new treatment. I think (I hope) in ten years we'll know more about this mysterious illness than we know now, and even more in twenty years.

  10. Member

    Member New Member

    Special thanks to each and every one of you for your comments. Each of you has helped me in a different way. I will forever research any and all options not only for myself but for everyone here in what I consider to be second family. I have an appt today with a chiropractor who I've bee told has had great results in treating fibromyalgia - we'll see?? Note to Mickie - I was put on Paxil about 2 years ago for migraines which I've had over a 30 year period. They worked extremely well!! So, I will ask my doctor if Xanax will also eliminate the migraines. Heartfelt thanks to all of you. We are so fortunate to have each other.
  11. Mikie

    Mikie Moderator

    I do not believe in using SSRI's just to treat FMS or CFIDS, but if they are prescribed for another condition and are working well, I would be hesitant to make a change unless the doc think it would be beneficial for you. Good luck.

    Love, Mikie
  12. klarry

    klarry New Member

    I am in my fifties, and have had fibromyalgia for at least twenty years. When I was initially diagnosed, the doctor reassured me that though I would experience pain throughout my life, FM was not a crippling disease. I strongly believe that attitude is so important. I can't take drugs because of sensitivity, but am able to do light exercises to keep myself flexible. Other people must deal with their own situations, but I can tell you that I intend to remain as active as my disease allows me. Hope you feel better.