What Worked for Me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.

  1. Ales

    Ales New Member

    My CFS started suddenly like a flu nearly 9 years ago. From the begining I knew it is a brain disease. From the neurological point of view CFS manifested like a dementia with a terrible dizziness, from the physical point of view CFS resulted objectively in a decrease of physical power of more than 99.99%, from the imunological point of view I "caught nearly all that flew around me" and I had constantly sore throat. There are theories of CFS experts that the immune system reacts inappropriately to a more serious infection which results in a brain damage.

    I responded dramatically to citalopram (Celexa in your country) 4 years ago. I took this antidepressant more or less accidentally since I had no depression. The effect was miraculous although it did not lead to a full recovery but I fully realised that CFS is a brain disease. Since then I have tried over 50 neuroactive drugs. I also noticed that the dosage of these drugs is very important and that some of these neuroactive drugs can be seriously harmful. Currently what works best is: 10 mg citalopram, 200 mg amisulpride, 50 mg amitriptiline, 100-200 mg gabapentin. As a result I am able to work full-time.

    Sincerelly Yours

    Ales

    Czech Republic
  2. maeflower

    maeflower New Member

    Hi. I read your What works for me. I tried exercise and I hurt so bad I had to stop but my doctor wants me to do it anyway, My question for you is; When I go to bed around 10 I lay awake for awhile until I have to get back up and usualy I have a snack. When I go back to bed I lay awake for a while or I may fall right to sleep. Do you have a suggestion on what I might do. When I am not working I cant get out of bed until 8 or 830. When I go to work I feel so tired I want to quite and that I cant do.
    Any suggestion will be a help. Thanks
  3. maeflower

    maeflower New Member

    Hi where do you get your vitamins and all the things you take? Linda
  4. jlarsen

    jlarsen New Member

    I have FM and live a pretty productive life, work full time, selling appliances. We are having a very cold winter and my pain level has really gotten out of control. I take Tramidol and a muscle relaxer but seems to not be too effective this time of year. I was reading other FM people "What Works for Me" and noticed several take Fibro Multi with Malic Acid. I just ordered my first 30 day supply. You requested what was in the shake? Did you find out I would also like to know......
  5. twiggles

    twiggles New Member

    The biggest thing that has helped with the brain fog and sudden nap attacks has been avoiding toxins such as perfumes, cleaning chemicals,scented personal care products, and cigarette smoke. Last year I discovered that almost instantly after smelling cleaning products my brain would fog up and I would get really drowsy. this explained why I would get so drowsy whenever I tried to do housework.Stores are bad too because of the cleaners they use and all the smelly scented products that they carry. I also often felt crappy and was ready to go back to bed after I had my shower and got dressed. Now I know that it is because I had just put fragranced shampoo on my hair, fragranced lotion on my skin an makeup-particularly bad is foundation- on my face. By the time i was ready for the day I was sleepy and brain foggy.
    Switching to fragrance free , chemical free products has made a big difference and has been easy because my local grocery store has a fairly good organic section and carries every thing I need
  6. NyroFan

    NyroFan New Member

    Hello ProHeath:

    I believe that 'good' medical care rules of over much.

    There are so many of us who do not have it (I think so for myself) and yet it is so improtant.

    My doctor, for example, takes on a very cold nature and just writes the prescriptions.

    What can i do?

    nyrofan
  7. moab341

    moab341 New Member

    Was what my Dr. ordered thinking it might help. He started me slow, and then increased the dosage. After about six weeks I was so anxious I couldn't stand it.
    I have heard that sometimes anti-depressants can have that effect on people and the anxiety eventually goes away.
    I was having a really rough time at work, so I had to go off of it and back on Wellbutrin which I'm not sure helps my FM or not.
    Has anyone else experienced anxiety with Cymbalta?
    I am new to this....diagnosed 3 months ago, but not new to all the symptoms I'm sad to say.
  8. Islebabe

    Islebabe New Member

    Ok the icon I chose isn't mad but there is no question icon? You know the smiley with the question over its head!
    So ok no sugar! That sounds awesome, but then what do you eat? Tell me! Blessings~~Imasleephelp
  9. Islebabe

    Islebabe New Member

    Ok, I think I said this, but I have had CFS since 1998 and I'm looking to find a more natural approach without overdosing because I'm already on alot of Western Meds which is fine but no more. The side affects are too difficult. Please don't try and shove your ideas, just share. Thanks~~Imasleephelp
  10. Islebabe

    Islebabe New Member

    Please share if you are homebound and what works since you are if you are. In America~~Imasleephelp
  11. Islebabe

    Islebabe New Member

    Move my stuff from the end up Moderator!~!~Imasleephelp
  12. Energizer-Bunny

    Energizer-Bunny New Member

    It may be something that I would be interested in trying.
  13. Shalala

    Shalala New Member

    Could you please explain what this is?
  14. Shalala

    Shalala New Member

    I am on that and I feel I did better on Effexor. The only difference I can tell is that my hands seem to be a little better but my headaches/migraines are much worse (I think that is due to stress and anxiety). Also the $$$cost$$$ is outrageous. I have to see the DR and try something else.
  15. Spring123

    Spring123 New Member

    I was diagnosed with EBV & CFS in 1989 (freshman in college)... I do believe that a healthy diet and getting ample sleep has helped. I have been to numerous doctors over the past years and no one seems to know how to treat this mystery disease. I decided to go to a Homeopathic doctor last week. He gave me a shot of a "remedy" and i am still waiting to feel better (having a 6 month old & 3 yr old does not help)! He also told me to try a product called Zeolite (www.zeoliteinfo.com). He said that will rid my body of all kinds if toxins and will help improve my overall health and well being. I will try it this week and get back to you all. Anyone heard of this or try it?
  16. smurfychicky

    smurfychicky New Member

    Admitting I needed professional help!
    When I got that help:
    1) Flurox
    2) Stopping drug & alcohol abuse
    3) Light excersize
    4) Evening Primrose Oil
    5) Fish Oil
  17. fungirl2100

    fungirl2100 New Member

    I believe Neurontin is used for neuropathic pain or all over muscleskeletal pain. My hubby was on it & not for anxiety.

    I hope that may help someone.

    your friend-
    Fungirl
  18. pearls

    pearls New Member

    - Getting the diagnosis: fibromyalgia with myofascial pain and chronic fatigue

    - Pain meds to take me over the pain plateau and back down again (I took Oxycontin and Vicodin, but now only take the Vicodin as needed)

    - Retirement!

    - Learning to pace my activities

    - A good multi-vitamin/multi-mineral pill, plus C complex, B complex, calcium, Omega3 fish oil, CoQ10, fiber tabs, vitamin E, Ginko-biloba, etc.

    - Oatmeal every morning, which helps curb my desire for snacks (I eat mine with cinnamon, vanilla, raisins, sunflower seeds, green pumpkin seeds, and toasted walnuts so I actually like something now I used to detest!)

    - a loving husband

    - a good pain doctor

    - a good chiropractor

    - a good internist

    - a heating pad in my recliner

    - walking

    - gardening

    - getting out in the sun

    - Neurontin

    - drinking lots of fluids (I've learned to love teas: caffeine tea in the moring and either decaf or herbal the rest of the da)

    - learning to let some stuff go, like housework

    - Vicks Vapo rub (a little over the bridge of my nose at night gives my sinuses the feeling of being less stuffy

  19. dangit

    dangit New Member

    hi ya all - 1st time here & very new w/dis stuff
  20. XxRebeccaSxX

    XxRebeccaSxX New Member

    What works for me is more of an attitude remedy. I'm 23 and have been dealing with fibromyalgia for some time now, I went through major depression spells with a lot of anger at people who didn't understand that the pain was real for years before I accepted it in myself.

    It helps to appreciate my effort when I'm feeling more or less physical and understand that there isn't any personal judging going on. Sometimes it's easy to match discomfort with a criticizing thought towards myself like thinking that what I feel is what I'm projecting towards the world that is a downer to be around, but it really isn't taking energy from other people or about them or making me negative. Start to be more on your side by directing a nurturing attitude towards yourself and your uniqueness and right to be comfortable as much as you can be. Fibromyalgia can be a big part of your life but there are parts of yourself and your life that can remain in wonderful tact during the rough patches like love and thanks for all the support and understanding that exists in the world when it does exist.

    Trust me, self support goes a long way. If there are any attitudes that you have that make you suffer more than you have to by directing impatience with yourself at yourself (like feeling like you're a burden) let it go as much as you can each day. :)

    *Rebecca*