need some advice about symptoms

Discussion in 'Fibromyalgia Main Forum' started by obrnlc, Mar 17, 2003.

  1. obrnlc

    obrnlc New Member

    hi all--i really need some advice here. i am now off most all pain meds and unable to function for any more than an hour at a time (on a good day) due to TIGHTNESS and WEAKNESS of legs--pain is there but tolerable since stopping the guai. (i think the guai was working well, but i personally was unable to handle it without pain meds). I am actively working a PT and home exercise program but find i can't even walk through a store without holding on to a cart for support, and walking SO SLOW that i can't even stand myself! BUT if i take 10mgs of vicodin or 2 darvocets i can function SO WELL that i feel i could go back to work, am able to go for walks UNSUPPORTED and do most household chores for the 4-5hrs that the pain meds work. My pain doc says i have to go back to work april 10 (my next appt) and the rheum. says i never should have been on pain meds to begin with. MY QUESTION---------when the pain is controlled, why does the WEAKNESS go away, and if it does go away, was it ever really there to begin with, or am i just CRAZY like the group of doctors i see all seem to think? Without pain meds i have to physically lift up my leg with my hand to pick it up, but with meds i can function so well. HELP PLEASE--any info or advice appreciated! Thanks, laurie
    [This Message was Edited on 03/18/2003]
  2. Mustang

    Mustang New Member

    Hi all--i got FM CF in 99,i was 53.
    And that was it, i was either in bed or at the doctors for 1 1/2 yrs. you all know the story. all the docs gave up on me, except one. He put me on Magnesium with Malic Acid, you have to take enough. 3 a day. Swallow it, smash it, put in food. At the end of 1 mo my symptoms started disappearing one by one. I have been pain free ever since. If i stop taking the Mag it starts again.

    I read Dr Youngs book The PH Miracle, which totally changed my life.
    I started detox with his green drink and changed the foods i ate to balance out the ph. I finally got that FM CF was a
    food/stress/enviornment toxic problem.
    And to my surprise, it was not only cheap to correct, but very easy. i buy the PH Strips as cheap as 9.00 for 100 cut into thirds =300.
    I take a Urine PH in AM to see if my body is too acid.

    I now take Mag/Malic acid ( when you stop hurting you can cut back on 2 or 1 a day)$.15, DHEA, 25 mg a day.$.15 1 qt of green drink a day $.75, b vit, minerals and follow the food guidelines in the PH Miracle Book ( at the library) which are very inexpensive and easy. With Dr Youngs program you can clean up in a matter of a week.

    I have had a 95% success rate with others who tried this.
    My body and mind are healthy now, have courage, please don;t give up. God Bless you, Laure
  3. JLH

    JLH New Member

    My doctor daughter totally agrees with you. So does my Rhuemy. What are we supposed to do? Their theory is the right type of exercise; even though it may hurt more at first, it will help in the long run. Also, hot packs, hot showers, baths, etc. Getting a good night's sleep is essential, even if you have to experiment with various meds to get the right one and the right dosage. (I finally found Zanaflex helps me the most.) Stuff like that. I know all of this but it's still hard for me to give myself a swift kick in the hind end to exercise. Right now I am going through physical therapy for help. The best thing that I have ever found to help is to "play around" in a warm water pool. About 40 mins. away from my house is a super huge pool at a hospital's "Life Center" where I have joined before. The water is from 3 ft. to 5 ft. and just walking the length of the pool, doing some leg and arm lifts in the water, and simple stuff like that makes me feel 90% better. I just get tired of paying for the membership, driving to the pool, and am embarassed for everyone to see me in a bathing suit (even though there are people there who look as bad or worse than I do! LOL).
    I've never taken any narcotic pain meds for the reasons you mentioned--just usually 600 mg of ibuprofen, which helps on muscle aches. I finally went to a pain doc for my neck and back, and was given Darvocet, but it was for the spinal stenosis, buldging disks, bone spurrs, pinched nerve roots, and degenerating disks in my back and not the fibro. The pain doc also gave me the same info about treating fibro with narcotics (your nerve endings get hooked on it and you have to have it). I am trying not to take the Darvocet ever day--using hot packs, heating pad, etc. alot. Of course, you're a nurse and know all of this. When you are in pain, the first thing your brain tells you is "give me a pain pill so I can quit hurting!" even if it's not the best thing for you and not the answer we want to hear.
  4. Mikie

    Mikie Moderator

    I don't know how much Guai you were taking, but if it gave you too much pain for too long a time, you can cut it back down so that the reversal is slower and less painful.

    I believe that taking opiods should be viewed as a temporary situation until one can find other treatments for the pain. I was very happy with the results I got from Morphine until the Guai had a chance to kick in. I also found pain relief from physical therapy and Klonopin.

    What was described about using opiods is tolerance. Typically when one is taking opiods, one will build a tolerance and it will take higher and higher doses to achieve the same result. This is true with other painful conditions, not just FMS.

    If you can, I suggest you give the Guai another chance, just slow it down. If you need to, use pain meds until the Guai has a chance to help. The Guai takes months to become effective at pain relief. In the meantime, there is no need to suffer.

    Love, Mikie
  5. pamela

    pamela New Member

    I can not tolerate ANY meds whatsoever and I fear someday if I get ill im going to be in for it. I was in a near fatal wreck and need something for the pain due to permanent foot, ankle, wrist and knee damage. Also had my bladder busted open. But as a result of the wreck I have now added to it the FMS/Myofascial pain and Multiple Chemical Sensitivity. So what would a person do in my situation? Im not going to work 40 hrs. a day drive 1 hour each way and expect to work in pain and fatigue. Then also have to cook, clean and shop on the weekends in unbearable pain and fatigue. Id rather have the narcotic and be 1/2 way functionable than to suffer needlessly like I did 2 years before. I can not have ANY Nsaids, asprin or lactose which is a filler in 99% of all meds for anything. On all the meds like vioxx, celebrex, neurontin, gabitrol and so forth I tried just made it all worse!!! Also I know there are meds out there I have not even tried that would send me in a reel. Can't even take herbs... the headaches and shooting pains on anything is unbelievable. This all started when the FMS hit in year 2000. So for people like me its the only thing out there. Just one of those things...Pammy
  6. layinglow

    layinglow New Member

    I believe the “hypersensitive nerve endings” are the tip of the iceberg. Looking into the increase (3 times normal levels) of Substance P in the spinal fluid of FMS patients might explain the sensitive nerve endings. Opiods do cause tolerance as Mikie expressed, but in my opinion, interruption of the pain signal through opiod and other similar therapies, is the only recourse for those who suffer from intractable pain are afforded at this time.
    Chronic, untreated pain is very detrimental to overall physical and emotional health, and has all sorts of ramifications. Long term opiod treatment for severe, chronic pain, has not proven to be detrimental. Tolerance is dealt with by a knowledgeable physician, and good patient communication.
    Regarding the post dealing with Supplements and pH balanced systems , I too follow this regime, strictly. However, it has not diminished my pain, although I believe it benefits my overall health, so I continue. Each of us responds differently to medications and supplements, and it is a personal quest to find what works for us the individual. In order to control my pain, I must have pain medications, and anti-seizure medication. Thank goodness, you too, have found supplement and a normal pH to alleviate your pain.
    Since this is a chronic, life-long condition, I choose to be as painfree as possible, obrnlc, and with that comes improved quality of life. No matter how anyone can obtain this by supplements and herbs alone or if need be--with prescription meds, I am thankful it is possible.
    Best Wishes, LL

    [This Message was Edited on 03/18/2003]
  7. obrnlc

    obrnlc New Member

    hi all--thanks for such good input and answers to my question--you all are the greatest support! My rheumy also says about the narcs causing ^pain and the vicous cycle they start--but it is so good to feel normal and do normal everyday activities! I had my PT therapist test my muscle strength and she said it was basically OK, just slightly decreased, although i used to have above average strength and endurance. But, this, and all the input from you guys made me feel alot better! After getting off of duragesic, I think i am just feeling alot of sensations that i was "numb" to while on the meds. Really trying to not take anything but usually have to daily. I appreciate all the suggestions, MUSTANG- what mg. dosage of malic acid/mag do you take? Just got back on that yesterday, giving the coral calcium that is "all the rage" nowadays a try, too. Thanks MIKIE for the guai info--i feel very inspired by your success with it,once i get under control here i plan to restart with just 3oomg 2/day instead of 600, maybe taking it slower will be more tolerable. I have noticed since on it (sept. 2002) the persistent low grade temps have gone away! Well, thank you all---Laurie