Newly dx'd treatment concern

Discussion in 'Fibromyalgia Main Forum' started by feelinold, Nov 23, 2002.

  1. feelinold

    feelinold New Member

    After a terrible illness five years ago, and lots of trips to the dr, I have been dx'd with CFS/NMH about 4 months ago. I am concerned about the meds I am taking because they don't seem to be helping any. Taking B12 inj, 54mg Concerta (with no effect, Adderall no effect either), Klonopin, Vit C/E&Multi, NADH and Reminyl. Doxycycline and Sporonox added because of skin infections. My fatigue has increased over the past 5 years, and started with a terrible flu. Only other medical issue before then (and still) is migraine. When you guys started out did you get pulled out of a fatigue rut? Do I need to be patient? I am starting to wonder if the dx is correct. I have had narcolepsy and other endocrine issues ruled out (suppoesdly)

    Thanks!
  2. feelinold

    feelinold New Member

    After a terrible illness five years ago, and lots of trips to the dr, I have been dx'd with CFS/NMH about 4 months ago. I am concerned about the meds I am taking because they don't seem to be helping any. Taking B12 inj, 54mg Concerta (with no effect, Adderall no effect either), Klonopin, Vit C/E&Multi, NADH and Reminyl. Doxycycline and Sporonox added because of skin infections. My fatigue has increased over the past 5 years, and started with a terrible flu. Only other medical issue before then (and still) is migraine. When you guys started out did you get pulled out of a fatigue rut? Do I need to be patient? I am starting to wonder if the dx is correct. I have had narcolepsy and other endocrine issues ruled out (suppoesdly)

    Thanks!
  3. teach6

    teach6 New Member

    I also have CFS with NMH in addition to FM and several other dx's. My first question for you is what are you doing to treat your NMH? For me that is very fatiguing and when I first saw my doc, almost a year ago, that was the first issue he addressed.

    I currently take Florinef, Proamatine, and Toprol for NMH. In addition I take large doses of rx potassium because Florinef causes it to be depleted.

    I have tried various stimulants, such as Adderall, but with mixed results. When they helped improve my fatigue levels they caused me to be unable to sleep during the afternoon, when I take my daily naps. Without them I am not able to function. I have a rx for Provigil, but my insurance company won't pay for it. So until my doc can find a study published showing that it can help with the fatigue in CFS, it's a no go.

    I also take B-12 injections, along with medications for pain, and ones to help with my sleep. How is your sleep? Often PWC's do not sleep well and this is an issue that needs to be addressed.

    I recommend that you learn as much as you can about CFS so you can help find ways to improve your fatigue levels. Unfortuantely each of us is different and what works for one may not work for the next. It is important to become your own advocate becasue so often docs are not as informed as we would like them to be when it comes to our illnesses.

    Even though I still struggle daily with fatigue my condition has improved remarkably since I first saw my doc about a year ago. Then I could only sit up for about 20-30 minutes at a time before becoming so fatigued I needed to lie down and sleep. Now I can sit most of the day and stand for limited periods.

    Although I am unable to continue in my chosen profession of teaching I am still able to work very part-time on a home-based business I started about two years ago. I also went to a scrapbooking session last night with a friend and am excited about having my first hobby in over 15 years.

    I haven't had enough energy in those years to do anything more than work and try to keep up with things at home. All these things help me feel like I am a normal person, even though when I return home I go straight to bed to rest.

    I'm sure you are aware that there is no cure for CFS. The best we can do is treat the symptoms and learn to balance our lives, getting as much rest as we need and limiting our activities so we don't overdo it and crash and burn.

    Barbara
  4. Roxi

    Roxi New Member

    Nothing works for me either and those stupid blood tests always come back normal. Doctor says I have FM but after all my own research I find I could have CFIDS, ME, MS, post polio, Lupus, sero-negative Rheumatoid arthritis, adrenal insufficiency, or all the above! It makes me nuts to know my life has gone in the dumper and no one knows why or what to do about it! What I wouldn't do for 1 painfree day?! Hope it helps to know you're not alone in your frustration!
  5. feelinold

    feelinold New Member

    The only thing we are doing now about the NMH is that I am taking Thermotabs about 4 times/day. It's a salt and potassium suppliment which according to the CFS specialist I am seeing should increase my total blood volume, and help me out without a RX. I haven't noticed an increase in my BP using them, and salting everything like crazy. I don't know what degree of problem was seen during the HUT, but they didn't think it serious enough to prescribe for.