ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Fibromyalgia grieving and opiate intolerance.

Discussion in 'Fibromyalgia' started by Misfit Toy, Apr 27, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

    This week has been horrible for me pain wise. I have been working a lot and leaning over so maybe that is the reason. Having said that, the pain actually fuels me to work more out of a need to distract.

    Or, perhaps it's the weather. The worst time of year for me is spring/summer as far as pain. Summer and winter.

    A lot of people on here love opiates, or they enjoy how it helps them overall. Not just the pain, but the CFS. For me, opiates make me feel awful. I have horrible itching. I take tramadol only to be up all night due to itching and then it just makes my mind wonder. I feel drugged and with how much? 1/2 a tramadol. That's crazy! Ultram does nothing for me pain wise but brings on a million side effects.

    What does help...sort of? Fentanyl, but I become drugged, like completely drugged from fentanyl. No itching though, but no sleep either. Interestingly though, Fentanyl ends up causing more pain, because it does something to the nervous system and makes me tense up. It totally messes up my brain. I become agitated and angry. I become livid on most opiates. They rev me up and make me react. Really react.

    I miss DARVOCET. The #1 drug of choice for this. I had no side effects, could sleep great and go about my day. Not anymore. Does anyone know if it is available anywhere? I have looked everywhere. Online that is.

    I have tried all opiates with no help. Dilaudid, morphine, make me vomit and itch. Demerol is the worst. Codeine...forget it. Benadryl doesn't even stop the itching with codeine.

    I take 800 mig of ibuprofen, I am on Lidocaine patches. I take baths, used magnesium body spray from ancient minerals....nothing helps like darvocet did.

    Just shoot me.

    The other day I realized how much pain I have by touching my arm. just putting a finger to my arm and poking it. What pain that caused.

    I didn't develop fibro until 14 years into this illness. That really bothers me. WHY? Why did it come on? I just got done with endometriosis and comes fibro. JESUS. Yup. That's how I feel. God, are you up there? Give me a break. The endo just about killed me literally and now this.

    I was thinking why I can't vacation well anymore. It's because of fibro. If the bed isn't right, the pillow isn't right, if I don't have my million meds and supplements, my heating pad, my fibro will destroy any kind of vacation. I need a whole other suitcase for all of my fibro stuff that I "must" have.

    A vent. A much needed pain vent.
    Xandoff likes this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Concord, NH
    My brother used to take Darvocet (paraplegic), I believe the FDA pulled it of the market. Fentanyl was bad news for me also, pain just kept getting worse. I was sleeping on my side(s) at the time, and would wake every hour from the pain! I luckily started seeing my Dr at the time, and he was like you know they give that do dying cancer patients! The Neurologists I was seeing at the time had prescribed it, tried so many damn useless drugs!

    I am familiar with your pain.

  3. Misfit Toy

    Misfit Toy Senior Member

    Thanks, GG.
  4. Xandoff

    Xandoff Michael

    Northern Vermont
    I believe that we all experience a spectrum illness and that our bodies react differently to different drugs. I am sorry you can no longer get Darvocet. I have read about people who were helped by a small dosage of codeine on a regular basis. Please read the following:

    ME & PAIN

    Prof. Dr. Kenny De Meirleir

    Produced March 2013,

    The Pains change during the disorder.

    Most patients, who recall how they felt before the run-up of this disease, remember they were free of pain in the beginning. The fatigue and the lack of recovery often occur before the start of Pain. The various possible causes are of a central nature. That is, cytokines, which are particles produced by our own white blood cells, can affect certain receptors and induce pain.

    This concerns mainly the so-called inflammatory cytokines, with one specific pointer to interleukin 1. They also occur in other disorders and animal models and are accompanied by pain of central origin.

    Bacterial neurotoxins also play a part. When the immune system has been seriously disrupted, all kinds of bacteria can no longer be eliminated. Or intestinal bacteria pop up, because the intestines are less capable of holding them back. Bacterial toxins can also cause central pain. Moreover there are a lot of other substances such as nitrogen oxide, which play a role. We know for example that if we reduce the effects of nitrogen oxide, pain is reduced.

    The same applies to a number of antibiotics that inhibit certain bacteria and also reduce pain. There is also a problem with opiate receptors. Endogenous opiates play a part in the brain, and with those receptors there seems to be a problem too. An English group is engaged in manipulating those opiate receptors, as to also reduce pain in patients.

    Perhaps the most important cause of pain is metabolic pain, pain from the metabolism. It is cause by a poor delivery of oxygen to the organs and also by mitochondrial dysfunction. The mitochondria are responsible for the release of ATP to let all our organs function.

    This is the most difficult pain to combat and the biggest problem, because there is no medicine for it. We can try to ensure the peripheral parts of the body getting more oxygen. We can do that artificially. But the release of several substances causing the large vessels to expand automatically causes a contraction of the small blood vessels which is the cause of cold feeling in the peripheral organs like fingers and feet, because the blood vessels themselves contract.

    This is a result of an altered sympathetic nervous system that is more active as compensation, but still can’t prevent H2S, NO and other vasoactive substances….to cause the expansion of large blood vessels. To such an extent that the small blood vessels are contracting. I think many organs suffer from a chronic oxygen shortage. And this will also, in the peripheral nerves…which contain blood vessels as well-cause a shortage of oxygen. So we have a mixture of neuropathic and metabolic pain.

    In my experience metabolic pain is the biggest problem because you can’t cure it, simply because there’s an imbalance in the blood circulation. Then there are all kinds of other factors. With this condition the red blood cells aren’t functioning normally, and there is also a problem with oxygen supply. I could mention an entire list of different mechanisms which all come down the to the same. We call them ischemic pains, due to a shortage of oxygen to form energy.

    The result is of course, the production of much lactic acid. We and others have found that while resting, the concentration of lactic acid in the blood to be up to three times the normal value. In normal blood 0.6 to 1 mmol lactic acid per liter is found. In a ME patient it is not uncommon to find 2 to 2.5 mmol per liter. And that a normal value in the blood of someone running the marathon of Rotterdam at considerable speed.

    In ME patients this is a normal value when at rest. That lactic acid comes from the tissues, which must convert all their glucose in lactic acid as a final product with much less energy supply. On the other hand there are also intestinal bacteria, as we have shown in a publication which produce both left as right turning lactic acid.

    Often the disintegration of D-lactate is more difficult with ME patients because they lack the enzymes to do so. That is animal lactic acid. So there are a lot of factors which cause the aerobic metabolism to shift to a more anaerobic metabolism and to me this is also an important element in the occurring pain.

    That’s why pain management must be performed with an overall vision on pain. Often one can’t cure this with one particular medicine, but with a more integrated approach one can usually cause a serious relief from the pains.

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