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  1. #11
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    Things are still on track to reduce the number of drugs I take. I'm now off the opiates and don't have anymore withdrawal symptoms. I'm still having pain, but I'm refusing to go back to hydrocodone unless its the last possible option. The current pain seems to be from neuropathy, but no one knows for sure yet. I'm now on pregabalin, which is kind of a super gabbapentin. I think its working, but the pain is only partially controlled.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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  3. #12
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    I hope you can find effective pain relief. Are you still on target to go RVing this fall?
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #13
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    I hope you can find effective pain relief. Are you still on target to go RVing this fall?
    That's my goal. I guess everyone has to have a goal. The reason I wanted off the hydrocodone so badly was because the gov't has made it darned hard to get and that in and of itself would have prevented us from going around the country this winter. At the moment, we are scheduled to head to CA (bay area) in Oct and then on to El Centro (Blue Angles winter training ground, so watch them every afternoon), then Yuma, and east to TX, LA, etc. I hope it works out.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  6. #14
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    Sorry I spelled your name wrong, couldn't edit, vdub!

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    Ah, you deleted the entire message when trying to do the edit, but the messages are sent out immediately to thread subscribers once it is posted, so I still got it.

    Wow Vdud,
    Congratulations I'm really happy for you and excited that things are going well with reductions in the pain meds. I have been reducing meds over the last seven years and are down from 24 to about 10 Meds a day. I still am on strong pain meds due to Wegs related complications ( Small nevre fiber neuropathy) and really do need to back off to be able to a live more active life. It's been a real roller coaster ride! Keep us updated on your progress, and take care of yourself.
    Tell me more about your small nerve neuropathy. How was it dx'ed and what are the symptoms?

    I have been having real bad muscle issues in my limbs. The legs were effected first and then it spread to my arms and shoulders. The worst part is the calves of my legs. The muscle seems to slowly tense up and then release with a twitch -- sometimes a rather violent twitch. Both the twitch and the time were it is tensing up to the twitch are pretty painful. No drugs have been able to get rid of it. The arms have also been effected for the last few weeks and last night I noticed I was getting whole body twitching where my entire body would just go into a spasm for a split second.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  9. #16
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    My husband found that Flexeril worked better than gabapentin for his neuropathy. And it has no side effects for him.

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    Thanks for saving my post. To find the small fiber neuropathy, they do a punch biopsy, 3 places in your leg, ordered by a neurologist. There are special labs that run the test. I had all the other nerve tests they do.
    My symptoms are burning skin,numbness, weakness and electric shock type pain in my fingers,hands, arms, legs,feet,and toes. I do have some facial numbness and jaw pains. It effects several things because it damages the nerves that are sensory.
    I too have been dx'd with FM, I probably do have it. It is really hard to say what came first, the chicken or the egg, but it all has mostly been Ócaused by Wegs. I am now waiting to have some more stomach tests, that maybe related. Then have to have more cardio test ran. The treatment for it is pain meds and my RTX infusions.
    I hope you find some relief soon, take care of yourself.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  12. #18
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    My husband found that Flexeril worked better than gabapentin for his neuropathy.
    I was on gabapentin, but I'm on Lyrica now which is kind of a super gabapentin. I have a doc apt in about an hour and I'm going to ask him to double the Lyrica. That would put me up to the max dose.

    The treatment for it is pain meds and my RTX infusions.
    Which pain meds are you on? I'm going to ask about the muscle biopsy test during the apt today. He had mentioned getting one a couple weeks ago, but it was more of a passing thought.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  13. #19
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    Thanks for saving my post. To find the small fiber neuropathy, they do a punch biopsy, 3 places in your leg, ordered by a neurologist. There are special labs that run the test. I had all the other nerve tests they do.<br>My symptoms are burning skin,numbness, weakness and electric shock type pain in my fingers,hands, arms, legs,feet,and toes. I do have some facial numbness and jaw pains. It effects several things because it damages the nerves that are sensory.<br>I too have been dx'd with FM, I probably do have it. It is really hard to say what came first, the chicken or the egg, but it all has mostly been ├*caused by Wegs. I am now waiting to have some more stomach tests, that maybe related. Then have to have more cardio test ran. The treatment for it is pain meds and my RTX infusions.&nbsp;<br>I hope you find some relief soon, take care of yourself.<br><br>
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    I have tried to take gabapenten and could not, it made me to lethargic. I also was put on Cymbalta, and Topamax for a while had a bad reaction to those also. I am on oxycodone as a break through med and extended release low dose of morphine.
    In the last two years I have been dx'd with Wegs in my Brain and the Small Nerve Fiber Neuropathy.I also have nerve damage across the upper abdomen,breast and back from a case of chronic shingles. I am still on 10 mg preds daily and bactrium three times a week. I hope to get the press reduced more after my infusion in July.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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