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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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I don't get it...

Discussion in 'General Symptoms' started by Francelle, Sep 11, 2011.

  1. Francelle

    Francelle Senior Member

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    Victoria, Australia
    As I have a Fibromyalgia diagnosis along with M.E., widespread pain is an accompanying symptom. Theories postulated for this is that there is heightened pain sensitivity due to faulty mechanisms in the CNS?? So.....

    .....why have I had NO pain from the bone surgery I had done over a week ago. I had always been told that the aftermath of bone surgery is quite painful. I have had some 'sensations' at the surgical site like tingling and itching which are more superficial at the tissue level but no bone pain!

    I have had increasing nausea and my digestive issues have worsened (possibly
    anaesthetic related) however and a very bad outbreak of 'cold sores' on my lips but not pain!

    Is it possible that this heightened pain is only to do with neuropathic type pain and not other pain - so in other words we are not wusses?

    Thoughts anyone?
  2. ukxmrv

    ukxmrv Senior Member

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    I don't have much faith in the centralised pain theory for FM myself. After FM developed I didn't notice any difference in everyday pain so can't explain or defend it. Even regularly painful things didn't feel any different unless they involved the trigger/tender points.

    One thing I noticed that the the centralised pain theory was very popular with the insurance company staff I dealt with and the NHS staff who were hopeless in treating my injuries after a RTA.
  3. Hi Francelle,

    I also have Fibromyalgia pain along with M.E./CFS, As Dr Klimas say's we are very tender people and depending on what we do or have done the pendulum can swing to one side or the other.

    Prior to the removal of a tumour from my femur mid way from hip to knee about the size of a walnut I had huge widespread pain throughout my body! Now after surgery I felt the best I had felt pre getting this disease pain free :)

    Sorry to have to warn you but your pain might soon return as mine did about two week after :( ask yourself what else happened post surgery what else did they do in the Hospital if you had an anaesthetic as I did on awaking did you have a IV drip increasing your blood volume? Then due to bugs in Hospitals what's the next procedure they give you post surgery IV antibioticsI had 2 shots now these are strong drugs.

    Then think about XMRV or HIV, antibiotics don't work as the virus quickly over powers the drug but at first it might tame down the virus giving you a false sense of full health. Due to this false sense I then tried the 3 main Hospital IV antibiotics, I even went as far as having a pick line inserted so I could self administer every 6 hours.

    On each one I tried I had the same result CRP inflammation improvement that was very short lived!!

    That's way the WIP and a retrovirus makes so much sense to me.

    Hope this helps as just my experience and opinion
    All the best Scott
  4. Francelle

    Francelle Senior Member

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    Victoria, Australia
    I agree ukxmrv that I don't fully espouse the 'heightened pain sensitivity' theory either. I once wrote to Dr Clauw expressing my reservations re. this theory but didn't receive a reply.

    Scootyaust, I think you may have misunderstood my post! It is not the neuropathic and other widespread Fibromyalgia pain that has abated, it is that I have no pain from the surgical site ie. where I had the bone surgery done. I think it is quite strange to get NO pain from a surgical wound.

    Sorry about your tumour. Hope this aspect of your health is better now!
  5. undcvr

    undcvr Senior Member

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    Francelle are you on any medication to reduce pain, or even LDN ? That maybe able to reduce your pain sensations. It seems like the surgery did weaken your immune system enuf to reactivate your HHV ( oral ) so you might want to have that looked into anyway.
  6. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi francelle, what the research done by the Lights shows is that those with ME or fibro have elevations of peripheral receptors to pain and fatigue. ME is more fatigue, fibro is more pain. Any theory which does not account for this is wrong. However, it is quite likely that ME and fibro pain have both a central and peripheral component. Fibro patients also seem to have constantly elevated cytokines, whereas ME patients have cytokine levels that spike and decline.

    See Cort's article on the Lights:
    http://forums.phoenixrising.me/cont...S-Uncovered-The-Light-Gene-Expression-Studies

    Bye
    Alex
  7. Mya Symons

    Mya Symons Mya Symons

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    I too always thought that the "we feel pain more then others" thing was BS. If anything, I have become so used to getting along everyday with pain that I am desensitized. I've had a uterine biopsy and two infected teeth pulled since getting FMS and I barely flinched. Oh, and I had a post-op infection with which the pain barely bothered me (after the first day). It was the vomiting I could have done without. Before FMS I had a cervical biopsy and I thought it was the worst pain I'd ever felt (besides labor). Little did I know...... I think these doctors just go with whatever is easier for them to believe. So much for asking and listening!
  8. Wonko

    Wonko Senior Member

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    England
    I've been told that my response to pain is unusual, in that most types of pain I can just knock into the background, of course there is a cost to this, pain is tiring even if I dont acknowledge it. I am still vunerable to some kinds of vascular pain and most types of neuropathic pain, and I haven't figured out a way of dealing with pain that completely overwhelms me yet, but since the neuralgia reset what I thought the maximium amount of pain I could feel was that doesnt happen often these days.
  9. sickness

    sickness

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    Western Australia
    My 'good' doctor has actually described me as stoic, when it comes to pain. I ignored most of my pain for years, but the all-over muscle pain is hard to ignore. I have started to get what I think is neuropathic pain, and that is quite nasty.
    'Normal' pain, like after my nasal sinus cautery, or when I broke my little toe is no problem to me at all. I remember the doctor I went to moving my toe around when it was broken. He kept looking at me and saying 'let me know if this hurts too much'. I was fine, really no issue at all. He was quite shocked when the xray showed that it was broken, lol (I wasn't, I had seen it sticking out sideways the night before). Weird all 'round really! I think that the numbness that I experience most of the time probably helps in that respect (see, always a siver lining :D).

    take care, ness
  10. allyann

    allyann Senior Member

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    Melbourne Australia
    I have had the same experience this week. I had a mole removed from my back with internal and external stiches and have felt very little pain. However, my FM pain this week has been more severe and my fatigue worse. I think your theory may be more accurate.

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