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  • CFS/ME'ers - What tx has helped the most?

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    Old 07-25-2005, 01:36 PM   #1
    Kali M
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    CFS/ME'ers - What tx has helped the most?

    Those of you diagnosed with CFS/ME or even FM (though I know there is a specific FM board):

    What has helped you the most with this problem (CFS/ME)?
    Finding a CFS/ME specialist? Taking antidepressants for pain? Immune system boosters (like Brenda & Allyson)? Herbs or supplements? PT or massage? Other meds?

    I've been dealing with this seriously for about 2.5 years now. Just now close to being diagnosed. Hope you all can help me figure out what worked for you, what didn't work, and possibly why.

    Thanks!
    Kali
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    Old 07-27-2005, 07:09 PM   #2
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    Re: CFS/ME'ers - What tx has helped the most?

    Hi Kali,

    I haven't been officially diagnosed as CFS. I went to see my doctor for a whole host of symptoms. Some of those symptoms included fatigue upon waking. I can sleep for 9 hours and still wake up feeling like my whole body is being dragged down by a heavy weight. My recovery period after exercising is awful! If I walk on my treadmill for 20 minutes, then later sit down on the couch to relax and read a book for a while ~ when I get up I'm extremely stiff. And the stiffness doesn't go away for a while. It takes me 2 days to recover from 20 minutes on the treadmill. Regular walking doesn't bother me ~ just concentrated excersing. I have lots of aches.
    The manifestation of my aches does resemble that of CFS. 2 years ago I was extremely sick. I had a fever for two weeks, often hitting 104. I went to the emergency room to be rehydrated 3 times. Normal blood pressure is 120 / 80, mine was around 95 / 60. I was put on an antibiotic and only continued to get worse. It took a double antibiotic before I started to get better. I had never been so sick in my life. It was after this sickness that I noticed the problems with stiffness and recovery time after exercising. I don't remember having the problem before.
    Now to answer your question ~ 2 weeks ago my doctor put me on Zoloft for mild anxiety. I did some reading and learned that some doc's are prescribing ssri's for CFS. I can tell you that the Zoloft has definately helped my aches and pains. I no longer feel like I have a heavy weight dragging me down every morning. I've been pleasantly surprised.
    I'm hoping to start exercising again and we'll see what happens.
    Best of Luck!!

     
    Old 07-28-2005, 04:25 PM   #3
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    Re: CFS/ME'ers - What tx has helped the most?

    Quote:
    Originally Posted by Kali M
    Those of you diagnosed with CFS/ME or even FM (though I know there is a specific FM board):

    What has helped you the most with this problem (CFS/ME)?
    Finding a CFS/ME specialist? Taking antidepressants for pain? Immune system boosters (like Brenda & Allyson)? Herbs or supplements? PT or massage? Other meds?

    I've been dealing with this seriously for about 2.5 years now. Just now close to being diagnosed. Hope you all can help me figure out what worked for you, what didn't work, and possibly why.

    Thanks!
    Kali
    getting plenty of rest and deffinately learning to pace yourself it does help when you start to feel to unwell on any form of activity stop! it deffinately works for me ive had m.e for 15yrs

     
    Old 07-30-2005, 08:04 PM   #4
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    Re: CFS/ME'ers - What tx has helped the most?

    Thanks you guys! Appreciate your answers. Help me figure out what I need to at least try first.
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    Old 08-03-2005, 12:37 PM   #5
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    Re: CFS/ME'ers - What tx has helped the most?

    Thanks ZuZu2. Done a LOT of reading and searching at this point. But worried about my work situation as well!! (In school now and don't have to worry about it too much, but I will in a year). Thanks for suggestions on the supplements.

    Have you tried the grape extract? (Max started a string on that and has found it to be of tremendous benefit).
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    Last edited by Kali M; 08-03-2005 at 12:38 PM.

     
    Old 08-04-2005, 09:23 AM   #6
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    Re: CFS/ME'ers - What tx has helped the most?

    What has helped me the most has been going to the Fibromyalgia and Fatigue Centers. I live about 2 1/2 hours away from the one I attend, but it is well worth the trip. They specialize only in CFS & Fibromyalgia and they are wonderful! There is no 15 minute visit with the doctor. Each appointment is anywhere from 30 minutes to over an hour! It is expensive, but it is so woth it! They do extensive bloodwork, more then what your family doctor does, and they treat with nutritional IV's, Compound presciptions, and vitaimins. If anyone would like further info. please let me know!

     
    Old 08-04-2005, 02:28 PM   #7
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    Re: CFS/ME'ers - What tx has helped the most?

    Thanks Fibroqueen. Do you remember the things they tested you for? I don't have the trigger spots for FM, but I have horrid and intense muscle & ligament pain as well as frequent muscle injuries. I know my IGF-1 was low about 3 years ago (as my symptoms were really starting to show), but I haven't had it tested since I've been at my worst. I did finally go hypothyroid. I just keep suspecting my growth hormone is just too daggum low. Also, feel I need more extensive lyme testing.

    Did your specialist do any tests for these?

    Thanks so much.
    Kali
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    Old 08-05-2005, 07:01 AM   #8
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    Re: CFS/ME'ers - What tx has helped the most?

    They tested for so much stuff! A lot of it is based on your symptoms. You complete a 24 page questionnaire before you go the first time. They took 31 tubes of blood. They check CBC, insulin, growth hormone, CRP, all your hormones, including the thryoid, you name it, they check it! If you would like some information, please let me know! I can give you their 800 number.

     
    Old 08-07-2005, 01:24 PM   #9
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    Re: CFS/ME'ers - What tx has helped the most?

    i've had me now for around 10 years. it is at the moment in rimission which doesn't happen very often.
    the things i tried was to rest an awful lot.
    i was doing my gcse's at the time and found i had failed most of them.
    i went back to college and did it part time to get my grades back up.
    i don't have a lot of qualifications but if u talk to the school they will help n give u stuff to do at home when u feel up to it.
    don't worry bout it. if u don't feel up to it take a year out. ur health comes first.

     
    Old 08-10-2005, 08:31 PM   #10
    Kali M
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    Re: CFS/ME'ers - What tx has helped the most?

    Hey Connersmummy,

    Thanks for the response. Many folks have said rest. Sounds like an appropriate plan...except it's difficult to talk the military into letting me rest or take "time off." They're not too understanding about this type of stuff.

    BTW, what are GCSE's? I'm assuming it's a college test of some sort.

    But, you're right. My health is important. I'm trying to force my health into making the choices for me...but it probably should be the other way around.

    Thanks again.
    K
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