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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Interesting result.

Discussion in 'Pain and Inflammation' started by vamah, Jun 25, 2013.

  1. vamah

    vamah Senior Member

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    This is just something interesting I discovered yesterday. I had stopped taking NSAIDs because they don't work and just upset my stomach. Have been having bad PEM the past week, with severe muscle aches. Then, on top of that, my time of the month came along with terrible cramps. I decided to take 4 ibuprofin, like I used to, just on the off chance it would help. Result: it greatly lessened the cramps, but did nothing for muscle pain. The only conclusion I can draw is that there is something about pain from PEM that is very different from other types of pain. Has anyone else had this experience? I don't think it's a severity issue because I get VERY painful menstrual cramps (like curl up on the couch and cry). Are there pain medications that are specifically better for pain related to ME/CFS?
     
  2. adreno

    adreno 3% neanderthal

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    Nerve sensitization can be a source of pain. High glutamate would contribute to this. How is your magnesium intake?
     
    Plum likes this.
  3. lansbergen

    lansbergen Senior Member

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    I remember when I was in a flareup and got a nasty injury paracetemol lessened the injury pain but the ME pain stayed the same.
     
  4. vamah

    vamah Senior Member

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    Not taking magnesium right now. What dose would you suggest?
     
  5. PennyIA

    PennyIA Senior Member

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    I had been taking ever increasing amounts of codeine-based pain killers for PEM and my chronic pain for YEARS. Went to a pain management clinic where they asked me to try stopping the pain meds. I noticed no increase in pain while off of the pain meds, none. Here I was almost popping them like candy - and only thinking they helped. It was nice to be able to reduce the brain fog that the meds induced.... especially since it wasn't a 'necessary evil' like I thought it had been.

    I, too, take ibuprofen when I get a flare-up of my tendonitis (chronic inflammation - no wonder I discovered all my methylation defects) - and it doesn't touch my chronic pain, not even a little.

    What helps me? So far, it's been heating pads and epsom salt baths. It doesn't eliminate them long-term (they keep coming back). But I can be at a good, low-pain level for a good, solid 48 hours after each epsom salt bath if I apply heat in the evenings and raise my legs. I can't take magnesium orally - but the epsom salt baths helps to get it absorbed transdermally - I'm going to be buying some magnesium oil/spray when I can to see if it can extend the length of time between soaks. I find it really interesting that magnesium added to a bath can make such an amazing difference. I've done hot tub soaks a lot as it can make me painfree while I'm in the tub - just not very practical. The epsom salt bath, brings my pain down to a 1 or 2 for 48 hours and makes it so much easier to live with.

    My mother? took nurontin (sp?) and found it helped a lot with her pain since it was more nuerologic than inflammation.

    Future steps for me - I'm supposed to try accupuncture for my upper back pain (used to be referred gall bladder pain, but it's become a chronic pain source now). And I'm supposed to try Pulsed Infrared Light (www.healthlight.us) for my muscle and joint pain (my long-term chronic pain) - to see if it can make a bigger difference.
     
  6. adreno

    adreno 3% neanderthal

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    400-800 mg.
     
  7. SOC

    SOC Senior Member

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    Cymbalta worked for me, but not everyone can tolerate it. Lyrica (marketed in the US for FM) is also said to help with ME/CFS pain. OTC pain meds are worthless imo.
     
  8. vamah

    vamah Senior Member

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    Talked to my doc this morning and he recommended Cymbalta, so going to give that a try. Have not slept more than a few hours a night this week because of pain. Of course, he still wants me to go to therapy also. I told him that I don't deny that I am screwed up, but don't think my physical symptoms are caused by my craziness. :alien:
     
  9. SOC

    SOC Senior Member

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    :rofl: Yeah, I can be crazy AND have ME/CFS.

    Good luck with the Cymbalta. Make sure you taper up slowly -- maybe even more slowly than your doc suggests. When I tapered, I changed by no more than 30mg every 2 weeks.... and I'm not particularly sensitive to meds. You can also change by 15mg at a time by taking the extra 30 mg capsule every other day, if that helps smooth the transition.
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    vamah

    Or you might need to taper up even more slowly. My autonomic doc prescribed it for me at a very low dose but suggested opening the capsule (20 mg I think), taking 1/3 rd every other day. Even that much was a whammy at first.

    Sushi
     
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  11. vamah

    vamah Senior Member

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    Wondering what kind of side effects you experienced. I have felt like I was running a fever all day, but then saw that hot flashes can be a side effect. I don't recall the dosage right now, but my doc said he would keep me on a low dose for at least a month. He said the time of day I take it doesn't really matter, but I was wondering if anyone had thoughts on that. I am taking in the am right now.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I would get groggy, then get hyped up--it was a long time ago so I can't remember, but a lot of unpleasant symptoms. I raised the dose to 20 mgs over about a month and then no more difficult symptoms. The time of day did matter for me. While I was in the groggy stage I took it at night. While I was in the hyped stage, in the morning!

    Sushi
     
  13. SOC

    SOC Senior Member

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    I always took it at night on the advice of my doc. I thought that was the general recommendation for Cymbalta.
     

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