FED UP, with clinics, but found something that will help.

Discussion in 'Fibromyalgia Main Forum' started by Msdeana, Jul 20, 2006.

  1. Msdeana

    Msdeana New Member

    I went to my clinic, like I always do with compliants of RFS and unmanaged FMS pain. I have been taking Neurotin 300mg 3x/day. Most of the time it makes me feel like a drugged out zombie and the pain is still there, not managed at all. I proceed to tell this to the clinic nurseP and dr who looked at me as if I had a contageous disease. Then went on to tell me I had no idea what I was talking about and just whining!

    This retired RN did not take that so well. I informed them of the parkinson meds that help RLS and if I could get relief from that , my FMS pain would be managable. They just laughed at me and said I was using this site for my own means. I told them was it not a fact that ones medical doctor was to work with the patient (me) to figure out what the best treatment option there was.

    I went on to tell the NP how rude she was and that I would let the proper people know of her uncalled for treatment. She just smiled and said she did not care and I could go elsewhere to medical care. Well she knows I cannot afford anything but a clinic! I am at witts ends, in tears and crying that no one offered to help.

    I relayed this information to my Psych/Therapist and she said that was uncalled for. She is looking for ways to help me and as it is a good college of here has FMS. SHe contacted her for idea and also gave me some information about CBT Cognitive behavioral therapy. It looks like it might work in my case to help me manage this god awful pain. I am giving it a try as hate to take allot of useles medication.

    I will keep you all posted, as I will get control of my life back....even if I cannot work...my pain WILL NOT rule my life. And my new hubby is oh so supportive and gives a great massage. I am also going to a chiropractor who helps ease my pain, and he has several pts with FMS. At least when I am done seeing him I can walk without looking like a cripple or saying a few choice words.

    Take care everyone...Huggers
    Deana
  2. 69mach1

    69mach1 New Member

    kolonopin? i am allergic to the gabepentin..but i seem to be doing better on it..helps w/sleep/pain and muscle spasms...i feel the difference when i do not have any...

    jdoie
  3. rigby

    rigby New Member

    A lot of clinic are with certain hospital which have a patient relation department. I had to report treatment my sister was receiving and she had insurance. After that she was treat totally different they don't like complaints because of funding. Sharon
  4. Msdeana

    Msdeana New Member

    I was on Klonopin and it did nothing for my RLS or pain. The only thing it did do was to make me gain 70 lbs, so I told my doctor I would not pay for nor take a drug that was useless so she took me off of it. I am on Flexeril but it does not do much better. It does help the small leg cramps but not the pain, LIKE I am having now that is keeping me awake. I am on Remeron too, but I cannot sleep when pain is keeping me awake and I refuse to be a zombie, to get pain relief. Will keep you all posted. Take care y'all!

    Deana
  5. oesmom

    oesmom New Member

    I don't have RLS, but have heard that lots of people that have it are low on iron, and that iron supplements help. Too much iron can be dangerous, so best to get a blood test first.
  6. 1sweetie

    1sweetie New Member

    I have had RLS for a long time. Between a few doctors and probably by accident, I have found some relief.

    I found many years ago that if I overdid caffenine it would drive by body crazy. It was in the pain meds I was taking...like Execedrin & Fiorcet plus in sofa drinks, tea, and coffee. It helped a great deal to get rid of those meds and now I really limit my caffeine consupmtation.

    Of course, this did not solve the probelm. I finally had a sleep test and they could see why I was not sleeping and was so tired when I did. I tried Requip but it gave me a headache. I tried Mirapex but when I tried to increase the dose as directed it sent me into depression and my limbs and body would jerk uncontrollably.

    They lowered the Mirapex to the lowest dose and added Oxycontin. That would work until 1:30 or 2 am. Then they added Klonopin and Trazodone and I would still wake at the same time and was miserable. By accident they decided to try me on Lyricia for pain in my feet. I can not take Neurontin because all of those type drugs make my conginitive issues worse and Lyrica is a sister drug.

    I was to try 50 mg for 4 nights and began a schedule to increase the dose to only 300 mg a day. The first night I added that small mg of a pill with my other meds, I slept until 10 am and that continued for a few days. I was so HAPPY. I could not tolerate taking any more of it though. I wish I could because it did control the pain very well and I want off narcotics.

    This along with magnesium supplements, massages, long soaks in salts at night in the tub, and lidoderm patches have helped. It is still an issue but I do get more sleep now. The 10 am did not last but 5 to 7 am is so much better than what I was getting.

    The day hours are a problem. I am wanting to control whatever I can with alternate things if possible. I say Stormy's post and I do eat bananas but I am going to give that a try now.
  7. Msdeana

    Msdeana New Member

    I make sure my diet is high in both potassuim, calcuim, and iron. I limit my caffine as I do not drink coffee at all and limit diet soda to maybe two a week. Use bottled water instead.

    I wont take oxycotin because it is not the kind of drug i need right now, I want pain relief not zombie effect! I wanted to try Mirapex (not sure of spelling) but dr laughed at me saying parkinson drugs do not work for RLS, she would not even try it when I showed her research material on it.

    So I continue to take Neurotin, flexiril, and remeron at bedtime. If it works I get a good night sleep, if it don't I will just have to wait until I can go to a real doctor who knows how to treat RLS and FMS.........clinic dr's rarely will try new medication, because they say they are limited by what they can give. MORE like controled by the big pharmacuetical companies. LOL!

    Hanging in and not letting them win, its my health, my life and my fight!
    Deana

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