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Pain, Inflammation, Or Neuropathy?


looneymom

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From reading many post on this forum, I know that many of you suffer with pain daily. I thought that pain would indicate some type of inflammation going on in the body. My son suffers with pain daily. He has had the ESR, CRP, and other testing that would indicate if inflamation was present. None of the testing has been positive. My best guess at this point is the high levels of antibodies that are present in Tyler's brain are causing the pain and sensitivity issues. Does pain not always show up as inflammation? What are your thoughts on this? If pain is part of the the POTS condition, why can't doctors figure out what is causing the pain?

Our insurance has approved the immunologist visit in Plano, Texas. The appoinment is December 20,2013. Hopefully, he can get down to the bottom of this illness. I hope this doctor is up to reviewing all the 161 pages of paper work that was emailed today.

Rachel

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Hi Rachel,

I'm on my phone so I can't link it, but, if you look up allodynia in Wikipedia, it gives a pretty thorough explanation of the various things that affect pain pathways under the 'pathophysiology' section. Inflammation is just one of the possibilities. I hope the immunologist goes well.

Katie

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Hey Rachel,

I had the same panel's ran that Tyler had done, however, mine done a while ago before the migraine pain became unbearable on a daily basis. I had the panel completed by my GI specialist and it came back pretty high the first time and when he repeated it 1 month later it came back within normal ranges. I'm curious to have my doctor run the panel's again to see what they are now that I suffer daily from migraine headaches like Tyler. Thanks for bringing this to attention

Your off to Texas! Hopefully you'll get a much deserved and special christmas gift!

Hang in there until then Rachel and Tyler!! :rolleyes:

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Looneymom, I have had chronic pain since I was a young child, around age 7 as far as I can remember. It got increasingly worse and to this day the bone and joint pain is terrible, so bad to make me want to go to the ER at times! I also get muscle spasms. I have had the same bloodwork run a hundred times. Sometimes inflammation shows, sometimes not. But the pain is always there. Most the time the labs were normal. Now that I take daily pain meds, I rarely have that excruciating pain, yay. It helps a lot for me. The docs never really have understood the cause but agree with treating it. Wish I knew more because this has plagued me for so long. I hope so badly you can finally get the answers needed for Tyler, I will be thinking of you and your family.

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I am not sensitive to meds like many others on here are. Only beta blockers seemed to give me trouble until I found the right one. I have been on Norco (hydrocodone 10/325mg) for a few years and that has helped tremendously. And no, I don't seem to have any addiction issues. I only take as prescribed and as needed. I have taken breaks from it with no withdrawal affects too. Now with cancer, I am on Morphine as well as the Norco. Morphine 3xday and Norco for breakthrough pain. I know that would be a bit overkill for others on here obviously but I have zero joint, muscle, and bone pain now. Thankfully! I'm at the point that I know I am in this for the long haul so if this is what is needed to not suffer then I am good with it. Plus having good docs to monitor you helps.

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MedicGirl,

Thank God you're not in pain with the help of narcotics. I don't think many of us can fathom having Stage 4 ovarian cancer in addition to having pots. You're an amazing woman!

Additionally, your posts are always sensitive and supportive of other people, and your attitude is upbeat.

Extraordinary!

Best,

K

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MedicGirl,

Thank God you're not in pain with the help of narcotics. I don't think many of us can fathom having Stage 4 ovarian cancer in addition to having pots. You're an amazing woman!

Additionally, your posts are always sensitive and supportive of other people, and your attitude is upbeat.

Extraordinary!

Best,

K

I agree 1000%.

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clavicale,

I'm sorry to hear that you are having to live with it. I'm assuming that you've tried some different medications. The doctors have tried a few with my son but can't seem to find something to help in the daytime. The extended release clonidine helps at night but my son cannot take it during the daytime. It makes him too sleepy.

Rachel

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