Discussion in 'Fibromyalgia Main Forum' started by Marta608, Sep 13, 2006.

  1. Marta608

    Marta608 Member

    Hi everyone, A couple of people posted about the information in the ProHealth newsletter regarding dopamine's involvement in FM yesterday but it quickly faded out.

    What I'm wondering is how you all feel about the increasing findings about our CNSs, neurotransmitter dysfunction and treatment. When I was first diagnosed with CFS, the doctor said he was sure it was caused by a neurotransmitter dysruption, then over the years so many other theories sounded reasonable that I was distracted from what he said.

    Eventually I did more research about neurotransmitters and their role in health which returned me to my CFS doc's theory.

    I think this is the way it goes for many of us, certainly for me:

    1. A genetic weakness in the CNS
    2. Early and on-going stress (fight or flight) which may result in symptoms of IBS, times of extreme anxiety, occasional depression, muscle pain, etc.
    3. A breakdown in immune function as a result of above
    4. For many, a viral event like EBV that the immune system can't ward off and/or one major stressor.
    [5. Genetic polymorphisms in HPA-axis - thank you,Lamotta]
    6. Neurotransmitter dysfunction/CFS/FM
    7. Continued symptoms of a stressed body

    These things may not happen in a neat sequence; they may occur simutaneously along the way.

    What do the rest of you think? [As you can see, I couldn't stand not "fixing" the list. I wonder how perfectionism fits into our genetic code?]

    [This Message was Edited on 09/15/2006]
  2. StephieBee

    StephieBee New Member

    You sure are a smart one!

    Ive read many of your posts...and sometimes they look like jibberish to me because they are so technical.

    I do remember you saying that you were a pharmasist...then I understood how you could explain all the medical stuff so elloquently.

    I have always wanted to go into medicine, but I dont have the concentration to keep up unfortunatly.


    BTW Marta...that was an extremely well written theory. Are you in the medical field as well? If you arent, I would say you would make a good medical proffesional!
  3. Cromwell

    Cromwell New Member

    This is an important discussion as if the scientists are correct then not only may our disease be helped more, it will also gain credulity.

    Pain: Well neuro receptor play an important role in pain perception too.

    Brain "fog": We already know and undrestand the role neuroreceptors play in bi polar disorders and the altered or heightened thinking, so why could they not be invo;ved in the brain fog many of us have.

    Dopamine: Seems to figure in a great many diseases and wellnesses. I can see from this voard how stress can play a role in our disease and the stress of not geting treatment that helps also.

    Maybe the release of stress is what is helpful for many of the people who seem to have flares(I am one of these) although my illness seems to be chronic now, my flares last longer-pain itself causes stress, so how do we get around this? Mayabe the sedating effects of some meds help diminish the cycle?

    I do think that tnis needs discussion. What natural things help dopamine?

    Love Anne C
  4. cherylsue

    cherylsue Member

    Well, how do we go about fixing it?

  5. Marta608

    Marta608 Member

    Could you please explain "genetic polymorphisms occurs in the HPA-axis"? You lost me after "genetic" - oh, and I'm good with "occurs in" and "the" too. ;>)

    Thank you.


  6. Marta608

    Marta608 Member

    Thank you, too, to the rest of you for your comments. I'm happy to see that there are others who are interested in this discussion.

    Lamotta, being a pharmacist, would understand all this more quickly that I do. No, StephanieBee, I'm not in the medical field unless you count the foggy time spent researching this syndrome (as I unfortunately do believe it must rightfully be called rather than illness or, especially, disease - so much for DD).

    Anne, you make excellent points about the questions that must be answered. I definitely think flares come from stress and let up when the stress lets up. At least mine do. You've been under extreme stress for a long period of time so it's no wonder you've had stronger symptoms.

    So many questions, so little patience on the part of patients. I hope someone's hopping on it! THIS, I think, is what we need to put our efforts toward rather than a name change right now.

    CherylSue, exactly right. How do we fix it? For now I think we work on behavior modification. A LOT.

    Please bear with me here. I have a little example of something I noticed: last November I lost one of my two dear old cats, then in June, I lost the last one. I also idiotically decided with the help of my former doctor to stop taking an SSRI since "you take so little of it". Since then I have had nothing but extremes of every emotion and symptom. I've blamed the SSRI withdrawal but....

    When my cats were alive, I talked to them. Not only did I talk to them but I used the "language" of my first young grandson when he was two to do so. Not quite typical baby-talk but definitely something that might concern my grown kids if they overheard it. The other day I commented out loud about something as if to the cats and I noticed how much more relaxed I felt! Yes, I miss my dear pets but I also miss communicating in a silly, relaxed manner! Of course I began talking to myself immediately. lol

    The point of this drivel is that we can do more for ourselves than we think we can. We don't all have to become crazy ladies who talk to themselves but we can look for and find things that we can do to relieve more stress, with and without drugs.

    This morning I read another post here that also interests me. It asks when it's time to get mad! (I know the poster will forgive me for fog-etting her name and the exact title.) I got excited about coming up with ideas that we can use to take charge of our lives again. I started a list there, then had to go to an appointment so I haven't been back yet to check responses. I hope you'll all feel encouraged to go to that post also and make suggestions.

    Meanwhile, thanks for stopping by here. We need to push this research! I just know we're really on to something.


    [This Message was Edited on 09/14/2006]
  7. Redwillow

    Redwillow New Member

    Wow Lamotta I actually think I followed that explanation. Don't ask me to explain it to someone else but I think I got it!

    Only thing is you used CFS in your explanation. Does this theory also follow for people like me with FM as well?

    hugs Marion
  8. Redwillow

    Redwillow New Member

    Wow Lamotta I actually think I followed that explanation. Don't ask me to explain it to someone else but I think I got it!

    Only thing is you used CFS in your explanation. Does this theory also follow for people like me with FM as well?

    I have on rheumy who believes I have both and one who believes I only have FM. So I try to read explanations for both conditions since the symptoms are so similar.

    hugs Marion
  9. pumpkinpatch

    pumpkinpatch New Member

    Wow, that's a great explanation. I'm going to read that again. Needed the layman's terms. Great thread. So how do we get HPA back on track and recoded?

  10. Marta608

    Marta608 Member

    Excellent! Thank you.

    I did understand the genetic suspicion but have never had the HPA-axis explained to me. And you're right, too, about that part of the process needing to be added to my list.

    Does this sound fixable or might we only be able to do what many doctors have been doing already, which is treating the symptoms? As Cindy said, how do we go back and change the code. Must we rely on behavior modification and drug bandaids rather than hope for a cure?

    Lamotta, like Marion, I'd also like to hear your opinion about FM and CFS. I feel from my own experience that they are parts of the same thing. I had 11 years of CFS, then have experienced FM to a greater degree within the past year. It to me like an extention of the same problem. Can dysfunction of the HPA-axis also cause intolerance to pain or increased pain? Seems likely to me. Isn't pain another form of stress in the body?

    I hope researchers are asking these questions!

  11. lovethesun

    lovethesun New Member

    For the newbies we need to clarify.For instance ,this article was on fibro as rich switches every week.
    I think that your conclusions are what I think.Linda
  12. Marta608

    Marta608 Member

  13. bandwoman

    bandwoman New Member

    I was fascinated by the newsletter and forwarded it to some of my family members and my myotherapist. I am going to be seeing my alternative dr. this Saturday. I have ultimate respect for this man. He was a traditional MD for 15 years and went into what he calls functional medicine. He has been on the alternative side now for 8 years I think. I have been seeing him for a little over 2 years now. One of his specialties is treating FM. His wife has FM and lupus so he gets to see the illness first hand. He is extremely intelligent. I am going to give him a copy of the newsletter and ask his opinion on it as he keeps up with the latest in the research on this. I will get back to you all and give you an update on his input into all of this. I personally find it very encouraging. I did notice that several ones here have already been taking Mirapex so someone out there must be in the loop and up with the latest findings. Thanks for the post.

  14. Roseblossom

    Roseblossom Member

    I have CFIDS, and treating my neurotransmitter dysfunction with amino acids & other nutrients is the reason I'm so much improved mentally. No more brainfog.

    About 6 months ago I began researching & experimenting with getting my neurotransmitters healthy in order to help me get OFF of an SSNRI drug called Effexor. I think Effexor messed with my neurotransmitters in such a way that it made my CFIDS symptoms much worse.

    Not only did the amino acids help me wean off the Effexor, but I noticed that my brain fog went away and I also had less depression and more energy.

    I take a Tyrosine every other day or so. Tyrosine is one of the amino acids that creates Dopamine in your brain. This helps eliminate the "despair" kind of depression. It's what gives you the joy in life. I take it with B, C, and Iron about 20 minutes after breakfast.

    I take a 5HTP every other day or so, about 20 minutes after dinner. This helps with the anxious, irritable kind of depression, and also helps me sleep well.

    The most important one I take every day is something called NeuroOptimizer, a blend of mood & brain function improving amino acids. It's a capsule which I open and pour under my tongue to dissolve.

    This method gets it into my blood and to my brain within minutes. It's very tart and stimulating to the sublingual nerves so some folks don't like it, but I know it's not really burning, and now I've gotten used to it. I even enjoy the sensation now, because I know in a few minutes I'll be feeling so good.

    I also take a complete amino acid tablet every so often to help with my physical energy. (horse pill! drink a full glass of water with it to get it down.)

    It's also important to take vitamin/mineral supplements daily because the amino acids use B, C, iron, etc to help convert the amino acids into the neurotransmitters in your brain/nervous system. I also think Omega-3 essential fatty acids capsules help.

    Don't take amino acids if you are on SSRIs or SSNRIs like Effexor, etc without consulting with your doctor. They were helpful to me in weaning off the Effexor, but I didn't start taking them until I was at a very low dose.

    Everyone's chemistry is different, but this is what helped me.


  15. ephemera

    ephemera New Member

    Regarding the issue of stress, I've often found winters almost unbearable. Cold temps, ice & days of not getting out into the garden make be blue. Doctors have pushed the idea of SAD disorder, but it really isn't me.

    Lately, on my own I've come to the conclusion that I'm blue because I'm not outside gardening, which is so important to my spirit & creativity. FM/CFIDS has taken away lots of my brain creativity, but at least I can plant seeds & enjoy seeing them grow into plants for birds, butterflies & hummingbirds. I'm into another place when I'm gardening, like when I was into a zone playing basketball as a teenager. I'm doing this at my own pace whenever pain levels & the weather cooperate.

    Recently a friend sent me a notice from (of all places) the AARP site. It said, "Studies have shown that the brain waves of gardeners are very similar to the ones of people who meditate."

    So now I'm thinking of how I can find ways to keep my brain waves in that relaxed state. Looking through seed catalogs doesn't cut it.
  16. Marta608

    Marta608 Member

    I'm so impressed with those of you who are quietly undertaking to find your best care.

    Nancy, yes, please do let us know what your doctor says tomorrow. I bet he'll be in agreement with this theory and he may even have more to add.

    Roseblossom, interesting how you've sorted out what helps you and what works on different types of depression. How wise of you to know that there are different kinds! Can you say more about NeuroOptimizer? I must be very cautious with stimulants, even vitamins and I don't understand why.

    Ephermera, I do know what you mean about gardening or for me more now, just planting flowers and observing nature. It soothes my soul. Can you buy some grow lights and do you have a place to put them so you can garden indoors during winter? The Eastern part of our country can be gloomy for many months. Are you well enough to volunteer or work a few hours a week at a local greenhouse? If you volunteer, you have a bit more control over your schedule.

    Thank you all for replying.
  17. Marta608

    Marta608 Member

    Linda, yes, we're talking about both CFS and FM. Sorry your quiet little question got lost for a bit...

    I feel quite certain that CFS and FM are due to the same type of Central Nervous System involvement.

  18. Roseblossom

    Roseblossom Member

    Like you, I "listen" to my inner body/mind to monitor what is helping, and what I need.

    I know I don't need to take every amino acid every day, but I can tell when I need them.

    The NeuroOptimizer is simply a combination of a few of the specific amino acids that optimize mental function:

    Cytidine 5-diphoscholine(CDP Choline)

    Phosphatidyl Serine (PS)

    Acetyl L-Carnitine

    Alpha Lipoic Acid




    Fixing my Neurotransmitters really have been the key to helping my CFIDS brain fog, Depression, PTSD, and Anxiety disorder.

    They help mood, sleep, energy, and appetite control too.

    I started with one, then tried another, etc until I hit upon the combination that works best for me.

  19. woofmom

    woofmom New Member

    All the "natural" things we are exposed to may possibly be taken care of by our bodies and minds. But, we are bombared with toxic chemicals 24/7. It will take another thousand or more years for us to evolve enough to handle them............................maybe.
  20. Marta608

    Marta608 Member

    Thanks again, Roseblossom. Where do you buy NeuroOptomizer?

    Woofmom, gosh, I hope it doesn't take that long. I'd like to feel better before I die. I have to think positively about it; I think we'll see some good advances over the next year.


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