Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Pain is real. Pain is valid.

Discussion in 'Fibromyalgia' started by Dainty, Feb 27, 2017.

  1. Dainty

    Dainty Senior Member

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    So, my fibro, which used to be an everyday, every minute thing, rarely flares nowadays. I generally get to pretend I don't have it. Yay! I have had, I reckon, less than 10 flares total in the past 2 years. It's easy to think back because my boyfriend had to get used to the fact that when I'm in a flare, touching me will make me scream.

    This morning, a flare came on suddenly, within minutes. As in, 5 minutes ago I as fine, now I'm not.

    What made it even more complex was I had just taken pain meds. After getting 3 teeth pulled recently, I've been on a regime of alternating a mixture of codeine + tylenol with diclofenac every 4 hours 'round the clock to keep my pain levels under control. This time I had taken a double dose, which I have done several times over the past few days as needed without issue. Approximately half an hour later, as I'm resting in bed, and the pain goes from 1 to 8 without warning, as I'm lying there peacefully, unmoving.

    And the first thought in my head was this isn't happening. This can't be real. I just took pain meds, I CAN'T be having a huge rush of pain. This makes no sense. I must not actually be feeling this. What the heck is going on??

    It was in the bones of my upper chest, it was in my upper shoulders, my elbows, the outside of my throat. Everything felt so stiff, so painful. Raising my arms felt impossible, though I could do it - slowly and with great difficulty.

    I was fine one minute; not fine the next.

    And I had to remind myself: What I'm experiencing is valid.

    Even though we don't understand why. I did not lie in bed and make up this pain in my head. Why do I think that I did? Why am I questioning myself? Because this is the message I would get if I went to a doctor about it. I would be given the side-eye, that I must have built up a tolerance to the meds (how come they are adequately dulling my otherwise unbearable tooth pain then?). That it doesn't make sense according to their textbooks, therefore I must be exaggerating or reporting something wrong.

    I've heard this sort of thing so many times in the past that now I don't need anyone actually saying it. I hear their voices replaying in my head.

    And I'm sitting here reminding myself that no, what I'm feeling is real. What I'm feeling is valid.

    When the mob and the press and the whole world tell you to move, your job is to plant yourself like a tree beside the river of truth, and tell the whole world — "No, you move." - Captain America

    I woke up my partner to comfort me, as I felt so traumatized by this sudden onset of severe pain and stiffness. He gently attempted to touch my shoulder. Within seconds I couldn't stop myself from yelling. That confirmed to my brain reeling for answers that it was "just" a bad fibro flare, dammit.

    Don't doubt yourself. You know what you're feeling. I can't wait for the day when the world moves over for us to acknowledge this thing as real. In the meantime, we'll just have to do it for ourselves.
     
    Last edited: Feb 27, 2017
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  2. *GG*

    *GG* Senior Member

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    When I had a bad spike in my pain, 10 out of 10. I had a Lidocaine infustion into my blood stream, they need to monitor your heart with a monitor when they do it, think it can kill you, had it done in 2009 and not since, so this is off of memory.

    I didn't really care if I died at the time, was not sleeping, in a depression because of all that. The procedure knocked my pain down 2 to 4 notches, so I was finally able to sleep again and made a slow recovery (3 months) out of work.

    GG
     
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  3. hedgehog

    hedgehog

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    Sorry this is happening to you. It can be so disheartening to suddenly have an onset of symptoms when you've experienced the relief of feeling better and had high hopes it'd stay that way.

    To me, trying to describe the pain to someone else can feel like trying to convince them you see a ghost in the room. I've often wished there was an invention that would allow a doctor to feel what a patient is feeling for a few seconds. I guess if we were that advanced in technology, we'd already be able to detect this illness, though!

    One saying that stuck with me was about having "the same sympathy for yourself as you would for a friend." You're right to be gentle with yourself and believe in what you're experiencing.
     
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  4. alex3619

    alex3619 Senior Member

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    Tylenol is poisonous if taken over a long time or in too high a dose. First, its active ingredient is not a pain med. Its a pro-med. That means its converted by the liver into the actual medication, and this process uses up the amino acid glycine. Glycine is needed for many other things, including detox. Then the active ingredient is slowly detoxed. This uses up the antioxidant glutathione. Glutathione is also dependent on glycine availability. Its a double whammy.

    Its possible other meds you are taking have a similar story.

    More protein in the diet might help improve the amino issue, though it might have nothing to do with dietary protein.

    I also get weird pain flares. The most recent I have now probably figured out in the last couple of days. I have a titanium implant on my left ankle after a bad fracture. I now have severe eczema there. I suspect implant failure and heavy metal poisoning. That means surgery. Doctors tell you it does not happen, but the scientific literature talks of a 5-10% failure rate, followed by localized eczema. The story about "it does not happen" serves the medical agenda, not the patient agenda.
     
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  5. xrayspex

    xrayspex Senior Member

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    I am really sorry Dainty. I know exactly what you mean. I have chronic pain and at times its very severe. Its bad enough to be in pain but to then feel doubted by others when you are, especially folks supposed to help with health, can be so hurtful on top of it. Lately I have thought disability by chronic pain and fatigue is the last area "ok" to discriminate against--I think we are in subculture that is poorly understood and that other people who consider themselves open-minded and compassionate about other human rights might still think its ok to turn away and smirk or roll their eyes at us, because they don't really buy it. They think that they know better than we do our own body. And they have no idea they are behaving in a way equivalent to a racist or homophobe, they would be appalled at that idea about themself.

    It has been on my mind again lately because I am facing a similar dental situation in the near future and it takes a lot of planning and preparation to try to take care of myself before during and after.....I know some people don't get that at all.....they bounce back in a day etc Hang in there, what Alex said was intriguing. I can no longer tolerate opiates, acetimonophen nor NSAIDs.....so extractions a real party. But they all cause rebound pain so bad that its not worth it for me--I am not anti-opiate--if propoxyphene was still on the market I would use that---it worked great for me--and I am pretty sure that's because it isn't complicated to break down in the p450 system but if I take these other ones I get stinging pain in my kidney area the next day and sometimes also in other parts of my body. Drink extra water and maybe some NAG? I have found it gives a little relief from dental pain (pre-extraction). Also there is a homeopathic medicine called migraine blocker on amazon that has a little belladonna in it, its easy to break down and a tiny bit for me can take edge off some pain with no rebound (but maybe less mentally sharp next day.) But yea sometimes there is nothing to be done but ride it out and its the worst ....sorry.....
     
    Last edited: Feb 27, 2017
  6. KME

    KME

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    So sorry you're in such pain. It's miserable.

    It may be worth running your regime past a good pharmacist to ensure that you're both maximising your pain relief and not inadvertently taking a bit too much of one or more of the three pain meds you mention - codeine, Tylenol and diclofenac. You mention taking some every four hours and sometimes taking double doses (don't know if this is of all of them or some of them). I have found a pharmacist really helpful for ensuring I was taking the right amounts in the right combination at the right frequency for maximum relief with no gaps, without putting myself at risk.

    Very much hope you have good relief soon.
     
  7. Dainty

    Dainty Senior Member

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    I've been in pretty close touch with a doctor throughout, that's where I got the regime from. :) "Double dose" is actually a full dose, because all my meds are drawn up in half-dose capsules as per my request. Sorry for the confusion! I find that usually I was taking fractions of doses, and that was hard to get accurate when you're dealing with powder in capsules. Having all capsules be half doses made it easier to control how much I'm getting.
     
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  8. KME

    KME

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    Sounds like you've got it well covered! Great that you have a doctor who "gets" pain control. Smaller doses are handy, aren't they. Hoping that flare eases asap.
     
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