In the dark

Discussion in 'Fibromyalgia Main Forum' started by Fifi47, May 11, 2015.

  1. Fifi47

    Fifi47 Member

    Hi, I was diagnosed a few years ago with Fibromyalgia. I was told you have it, and off I went. Previously to this, and quite a few years before, I had collapsed with a stroke. It turns out I have a Carvenoma on the brain stem and I had a bleed. Neurologically I became better over a long period of time, but I have never got over it totally. After all it's still there. However, I started having physical problems, joints were hurting, pretty widespread pain. I got used to it. I was told this is Fibro.
    I have never know enough or been told anything about Fibro and I'm wondering if this is what i really do have. Some people say to me oh I can't be Fibro, as it's just a few aches and pains and you get very tired. Well I don't know what to think. The pain in my hips is so bad now, it feels like they are going to snap. I went into crisis three weeks ago . My neck became stiff, I could hardly move it. I now have a frozen shoulder, I still can't move my neck fully. My arms ache, and this may sound stupid, but they even hurt when I dry my hair. My chest feels like I am being crushed and I don't feel like I can get enough air into my lungs. I do have asthma but it is controlled very well. This is different . I get what I call brain fog. It's the only way I can describe it. I feel disconnected. My legs are getting weaker and trembling, coming down the stairs is so hard now. Every bone in my body hurts. I have little or no energy. I even ended up back at the doctor last week, as I had a cramp in my head. I thought my brain was going to explode. My feet are cramping in bed at night.
    Bottom line is I feel a total mess. I go to my dr, he gives me diazepam to help the muscles relax, as I get very bad muscle spasms. But this is not helping much now. The air hunger is at its worst. I don't know what to do, or who to turn to. Should I question this diagnosis, or is this Fibro. If it is, I hate it and I don't know how to get through this....
    Thanks for letting me prattle on, I'm just need help or advice.....
  2. IanH

    IanH Active Member

    HI Fifi47
    Your symptoms do sound like FM.
    Fibromyalgia is not really a disease as such, it is a set of symptoms which have a typical pattern to them, as you describe. FM is associated with a variety of possible underlying causes:

    Physical, especially neurological trauma which lasted for a long time. (This fits your history), this can include prolonged painful conditions such as duodenal ulcer.
    Immune system dysfunctions and autoimmune diseases, such as MS, PD, SLE(lupus) and ME (ME is an immune system dysfunction but not autoimmune).
    Prolonged infections, particularly of the digestive tract.
    Various cancers.
    Lyme disease, Ross River Fever and Q fever. These are all vector borne prolonged infections affecting the immune system.

    Some call these secondary FM but whether a so called primary FM exists is doubtful, it is just that the underlying cause has not been identified in some cases.

    There are great variations in the disabling effect of FM. Some with a nagging widespread pain yet others with a whole range of symptoms caused mainly by a poorly functioning sympathetic nervous system. It is well known that brain changes occur in FM and cells of the brain called microglia are in a state of "inflammation" or activation. It is also known that the microvessels or arterioles feeding blood to the skin and muscle tissue are constricted. This is associated with a build up of toxins in the muscle. These toxins (including lactic acid) are a natural product of "respiration" or energy production by the mitochondria of the cells. These are normally removed quickly but it is thought that in FM the blood flow is not sufficient to do the job.

    The treatment for FM, other than SSRI and SNRI drugs is to use a selection of supplements which reduce the microglial activation, inhibit the excitatory nervous system and improve mitochondrial function. In addition, carefully selected exercise is absolutely required. The exercise helps to maintain optimal blood flow and toxin clearance. Bear in mind that this type of toxin is not from outside the body but is produced by your system not functioning properly.

    Currently we recommend the following:

    Taurine 4-5 grams twice daily. Taurine is vital for reducing microglial activation. It assists in reducing neuropathy and in improving muscle function.
    Vitamin B12 1 mg, Methyl Folate (MTHF) 5 mg daily, acetyl-carnitine 500mg twice daily, CoQ10 150mg daily, Benfotiamine (Thiamine) 100mg twice daily, magnesium (any form) 300mg twice daily. This set of supplements is used widely in the mitochondrial diseases to assist the optimal functioning of mitochondria.

    If you can, add the following:
    Vitamin D3 5000IU daily
    NAC (N-acetyl cysteine) 500mg daily NAC is used extensively to improve the supply of glutathione, the body's most important antioxidant and an aid to mitochondrial function.

    As a note: Taurine deficiency is widespread in FM. When a Taurine deficiency exists, the body can use glutathione to make taurine but this is unfortunate because it reduces the glutathione supply.

    For more information on the supplements I have mentioned look them up on google and also on this site.
    Last edited: May 12, 2015
  3. sunflowergirl

    sunflowergirl Active Member

    Ain't life grand.....not. I'm sorry you're going thru so much. You mentioned about asthma and wanted to give you some info. My doc. said I had asthma so prescribed an inhaler which didn't help much so after a year of it getting worse.....breathing hard just walking around the house, I went back. Had a lot of tests, including a one hr. breathing test at the hospital, a treadmill which I flunked because of trouble breathing, and a heart test. Turns out I've got COPD and was prescribed a steroid inhaler which has helped immensely with breathing. I've had FM/ adrenal fatigue, cervical and lumbar stenosis, etc. for years. So COPD was something new for me.

    I also have a book I swear by.......Trigger Point Therapy Work Book by Clair Davies. You can get this online. Most of us who have FM also get trigger points which can create lots of various pains in our body. Get the book and start reading and you might be really surprised.
  4. Granniluvsu

    Granniluvsu Well-Known Member

    Hi Fifi47, IanH and Sun,

    Yes, Fifi47, it surely does sound like you have FM although not all people have exactly the same symptoms but some do, and some not necessarily all the time. . From the beginning over 30 years ago I started with feeling like the head was going to explored as you said. I still have that with mostly pressure in the back of the head now and I guess I don't have anything life threatening cause I am still here. Yes, I have lots of aches and pains and not necessarily all the same pains all the time, although some of the pains I do have all the time, mostly, head, neck and shoulders. Also lower back and legs some too. I try not to baby myself and not sure what is what since I know I have Osteo Arthritis too as well as Chronic Myofacial Pain syndrome . I also have Osteoporosis which has gotten somewhat better on natural stuff and injectable Forteo.

    Sorry to hear about your stroke years ago. That may attribute some of you head problems with that . However, I never had a stroke and I have similar symptoms.

    I was dxed about 10 years so, I think it was but for years I had this stuff with no dx and some of the docs and chiros thought I was making things up, I think, at least a few of them. I also have that Trigger Point therapy book but I need to go read it more and try and do something about it. I have no problems with my lungs but am guessing that singing in different groups may have been helpful to me in breath control although occasionally I do have to do more staggering of breathing , in hopefully in the right places :)!!! I also have not to much NRG but not sure if that is from

    Currently I am only taking 1/2 Flexeril at night and had been taking Klonopin ( generic )to help me sleep. Presently I am only taking the 1/2 Flexeril and 1 Somnapure ( natural sleep aid) instead of 2 each night which has been helpful. I take a load of supplements but not some of the things that Ian has mentioned. I need to check them out. I found that high powered pain drugs were not for me and so only take IBU occasionally or Arthritis Tylenol. I felt that those drugs were making me feel like I was in la la land and since I am still busy and driving about, they didn't workout for me. .

    Not sure if my lack of NRG was from CFS or just frustration from constant pain and then who wants to be doing anything with constant pain?? However, I just keep pushing and if you have stuff you enjoy doing please try and continue to do them, even if only on a limited basis. Sun loves to paint, and I love to sing so that is our outlets and I think also helps us get out our frustrations and helps to calm us. I consider it my therapy :)!! Please pardon my rushing through this and going from one thing to another in this post. Another one of my problems is also fibro fog which is also another annoying symptom to say the least.

    That's enough for now. Hang in there Fifi47 ! I am assuming you are a fairly new member. Look around ProHealth and I am sure you can find a place where you feel comfortable. You might try the Chit Chat Forum ( Not Chat board) where there are lots of fun and knowledgeable people to chat with about almost anything. They also have lots of supplements and information on them and other things on FM, etc. Chatting with others can help a lot when you have this kind of stuff .

    Lots of soft hugs coming your way,
    Granni :)
  5. IanH

    IanH Active Member


    There is no evidence that taurine reduces cortisol
    . However there is evidence that taurine attenuates glucocorticoid muscle atrophy.. I don't know why you were fatigued after taking taurine. Do you have FM or ME/CFS?

    Some people with ME/CFS have reported a sulphur amino acid intolerance (Taurine is a sulphur amino acid). This can mostly be reduced with a supplement of 100-200mcg Molybdenum. However I don't know if these people experienced increased fatigue.

    Taurine should have little effect on fatigue, however if you take any SSRI or SNRI or a tricyclic (amitryp) or gabapentin it may interact with the drug and cause tiredness/sleepiness/fatigue.

    There is some evidence that taurine can reduce blood pressure, in fact it is used to reduce BP in stroke prone hypertensives, however this should not have any effect on fatigue unless you have ME/CFS and already have low BP. I suppose this would be possible but there is no data on this.
    Last edited: Jun 18, 2015
  6. IanH

    IanH Active Member

    I would suggest that there is an interaction with GABA.
    Once again though, there is NO evidence that taurine reduces cortisol output or antagonizes cortisol receptors. I don't know where you are seeing "comments" but if they are coming from a reputable source I certainly would like to see them. If you could provide me with the URL or references for such comments. This is quite important because taurine is in wide use for many neurological illnesses. Thanks.

    Also regarding BP, do you take Vitamin D3 with Vitamin K2, if so what dose?
  7. IanH

    IanH Active Member › Health
    John Gray
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    Taurine is the amino acid of anxiety control and stress management because it lowerscortisol levels and reduces anxiety. Even further, taurine has been used ...

    This is not supported by any scientific evidence at all.
    The nearest we can get to understanding Taurine's anti anxiety effect is its binding to and activating of strychnine-sensitive glycine receptors. That is it reduces neural hyperexcitability. In addition it is known that taurine deficiency increases anxiety. This all suggests that taurine is a neuroexcitatory-modulator. No action on cortisol is required to explain taurine's anti-anxiety effects.

    There are many people who comment on various modes of action of drugs and nutrients like the person you have quoted but essentially they are not relying on reliable data or even on any data at all.

    As I said earlier the likely effect of taurine in your case is via an interaction with gaba.

    Needless to say if you are having a problem with supplemental taurine then it is best to avoid it and rely on your body's making it, which it does in great quantity anyway.