OK, so I need your help one more time

Discussion in 'Fibromyalgia Main Forum' started by mariac2000, Oct 17, 2002.

  1. mariac2000

    mariac2000 New Member

    then hopefully I can make a decision what to do.

    Choice # 1 My "good doc" called me today. Nothing else has shown up on my bloodwork,but he "has this guy" in Florida who used to compound some kind of medicine for a patient of his. It took away his pain and exhaustion. For some reason the fda made him stop making it, but now he can make it again. He wants to put me on this whatever it is. I told him no way. He has no other suggestions.
    Choice 2 My primary doc suggested I go to a pain center, sounds ok but what about the exhaustion and fibrofog.
    Choice 3 A nurse at the local hospital suggested I go to one of the big hospitals in NYC, a 45min drive, not to bad but they would put me through all kinds of tests.
    Choice 4 My dad found a website that had a phone # in Arizona you can call to find local drs who aggressivly treat FM. Have you ever heard of this?
    Don't know what to do, but #1 is definatly out and I am done with that Dr (who I actually did find on the good docs list at co-cure) But I can't seem to get my head around the other choices. Have any of you had any experiences with any of these things?

    Maria

    PS I swear if I felt a little better I'd be able to make this choice all by myself, but my brain doesn't work that way anymore
  2. mariac2000

    mariac2000 New Member

    then hopefully I can make a decision what to do.

    Choice # 1 My "good doc" called me today. Nothing else has shown up on my bloodwork,but he "has this guy" in Florida who used to compound some kind of medicine for a patient of his. It took away his pain and exhaustion. For some reason the fda made him stop making it, but now he can make it again. He wants to put me on this whatever it is. I told him no way. He has no other suggestions.
    Choice 2 My primary doc suggested I go to a pain center, sounds ok but what about the exhaustion and fibrofog.
    Choice 3 A nurse at the local hospital suggested I go to one of the big hospitals in NYC, a 45min drive, not to bad but they would put me through all kinds of tests.
    Choice 4 My dad found a website that had a phone # in Arizona you can call to find local drs who aggressivly treat FM. Have you ever heard of this?
    Don't know what to do, but #1 is definatly out and I am done with that Dr (who I actually did find on the good docs list at co-cure) But I can't seem to get my head around the other choices. Have any of you had any experiences with any of these things?

    Maria

    PS I swear if I felt a little better I'd be able to make this choice all by myself, but my brain doesn't work that way anymore
  3. Fairyeyes

    Fairyeyes New Member

    Let your fingers do the walking, wasn't that the motto from the old phone book commercials? I'm serious, before you run yourself ragged, make phone calls, and do the research. There may very well be a doctor in your community/insurance programme who will suit you. Ask all the questions you want, get the answers. If they don't suit you, hang up, and call another. Your choices are not as limited as they seem.

    I've already decided no more drugs for me, so I don't feel as though there is a deadline to get into the doc. If I was in a serious flare, then yes, I'd go to urgent care and get some percoset, but otherwise, I feel like I have been suffering with this for a long time, and pressuring myself, or acting like I am in a race will only make me feel badly.

    Today, do this... take a bubble bath, or a nap. At least close your eyes for 15 minutes and think about nothing but your breathing in and out. You need to relax a little. You are putting a whole helluva lot of stress on yourself. Please be gentle and kind to yourself.
  4. allhart

    allhart New Member

    im going to also look for a pain clinc thats actually what the urgent care dr and the pharamacy recommended,they hare suppose to help with every aspect not just pain ,im on the seach now for a new pc because mine will not give me ANY meds now ,
    i have been in some clincal studies for things i was actually part of the study for imatrex the migrain med,
    i wouldnt discount the 1 dr or totally rule that out the fda puts a stop to so many things that help you should realy think about it do you realy think it could make you worse? im so bad right now id try something i know is poison to find relife .just a thought,but the pain clinc is probley a good idea have your dad order the list ive heard of it but because its 17.oo i cant afford it and they would not tell me if there was a dr here in town on the list even though im in the same town there located,sorry im just fustrated had bad day ,good luck with what ever you decide let us know.
    kara
  5. jan a.

    jan a. New Member

    sorry to hear your frutration...unfortunatly its all too familiar....didnt you say once you were from oakland, n,j,? If so I used to live in oakland too...I live in florida now but know your area well..my kids were born at valley hospital, ridgewood,...Its so weird that a big metropolitan area like that dosent have a doctor for you, not even one! Its awful...mabe Englewood medical center and hopital would know someone because that is where that dr. richard bruno is who does all that research on postpolio sequaule...Im not suggesting that that is what you have but he talks about chronic fatigue syndrome and fibro and mabe they have information on someone to help you...you cant go on suffering like that without somebody to help....go to new york and get the tests if thats what it takes , though it would be a hassle to go over there, but mabe they can find something for you to go on...they may do the more sophosticated tests there (pcr) testing for hard to find infections...someone suggested lyme disease and they had a story on the news here about a woman who got lyme disease and she was totally crippled from it..with very strong antibiotics (introvenous type) she eventually recovered....good luck with what ever you decide but dont give up theres someone out there who can help you....love and best wishes...jan a.
  6. stillafreemind

    stillafreemind New Member

    I already forgot the number of the one that I would think about..but it was the one the fda poo pooed the med..even if you do not decide to use it..could you by any chance find out what that is? I would be tempted with that one maybe.
    Take your time and follow the gals advice about phoning around first. MUCH easier on the bod and brain! I will say a little prayer that you are lead in the right decision. still
  7. Joannie

    Joannie New Member

    I wanted you to know my experience with a pain clinic. I spent three weeks away from my Husband and children at the Mayo Clinic's pain clinic. It was something me and my Doctor felt I truly needed. It cost the Ins. Co. $12,000.00 for in my opinion nothing but friends who suffer from chronic pain too. The program was very misleading and I gained nothing from it. My Aunt also went through U of Iowa's pain rehab and she too got nothing from the program. I actually about lost it in there. I have not been one to take much medication and the program seemed more of a drug rehab then a pain rehab. These people literally took your meds the day you walked into the place and they told you when you could use them. No matter what people were on they were done within the first week! Talk about some days being stressful with these poor people suffering from pain and withdrawls too wow! But me and my aunt felt both clinics focused too much on drug abuse apposed to dealing with your pain. They explained how rest and relaxation was so important but never explained how you are supposed to actually do it when raising small children. It was always you just find a way. I truly believe coming back home after the clinic I was more depressed for the simple fact the clinic is not "realistic" in the real world. Just a note on pain clinics too, SS Disability has stopped providing coverage on these clinics for this very reason they aren't as effective as they lead you to believe they are. My Doctor is very disappointed with it too and she has given me meds since this.
    I don't want to upset anyone by saying this about the clinics because there may be some that they really do help. All I know is that the circle of 8 close friends I met there none of us gained anything from it. Except great friendships for a life time.
    I hope you can gain some insight on this and I wish you luck. I would keep researching and hope this isn't too disappointing to anyone.
    Joannie