Neuropathy Frustrations: 'Do I Sound Pissy? I Do Believe I Am

Today's post from arimayasheart.com (see link below) reflects the frustrations many experienced neuropathy patients feel as they drift from pillar to post at the whim of their medical specialists and doctors. If your neuropathic symptoms are bad enough that you need opioid-strength medication to keep them under control, you'll identify with this article. Well worth a read, if only to realise that you're not alone.

the angry patient
Life in the Auto-Immune Lane Michelle August 17, 2011

I’m frustrated and pissed. This post has no happy ending. With that said-

I’m completely off all pain meds. Not just narcotic but all. I am still on the fence as to whether it was a ‘good idea’ to go off of narcotic pain meds. I don’t have that sick poison feeling anymore but I can feel everything that is going on in my body. This is not a good thing. I feel like my healthcare ‘team’ set me up for failure in a big way. I realize this sounds paranoid but when you are dealing with 3 specialists and an egotistical idiot of a primary care, and you are sick all the time? You pretty much get to know them.

I haven’t had any treatment for the disease since March as the week of my April infusions I was hospitalized here. Now my rheumatologist is convinced that the treatments caused it. I think he is afraid to treat me. Cellcept was supposed to be started, then he said let’s get an MRI of your legs. It’s been over a month since the MRI and there is some communication breakdown between the hospital here and the hospital he is at. It’s been 5 months and I’ve had no DMARDs no biologics no chemo no anti-malarials nothing but prednisone. We all know how bad prednisone is for you. Do I sound pissy? I do believe I am.

My pain doc ordered an infusion of lidocaine. Yes, lidocaine. He said if my pain levels drop as I’m getting the infusion then I”m a good candidate for a heart medication that will work on pain. I was really scared to see a bag of lidocaine hanging on the IV pole. It sure seemed to me like it would kill someone. Or at least just numb my brain. As it turned out my pain went from a 7 to a 2 in one hour! I cried tears of joy. Something that works I don’t believe it. The next morning I’m taking the pills. Within a few days I feel this awful feeling that I remember too well. I can’t believe this either. My small fiber neuropathy is going full tilt. I am in shock. We’ve had this under control for quite a while now. This is the worst pain ever. I know this and it just keeps getting worse. C calls the pain clinic and my doc is out. OF COURSE. So we call my neurologist who then tries 3 different meds in as many days but it’s only getting worse. I’m angry and I haven’t slept in 3 days and I feel sorry for my family because I’m in so much pain I can’t help but show it and it makes me feel bad and mad at my stupid friggen body at the same time. Nobody can help me and the pain clinic and the neuro tell me to go to the ER. No. I won’t go there anymore. I spent months dosing down off pain meds and if I go they will hit me with dilaudid and all the withdrawal I went through will have been for nothing. I am on fire, burning the burn that feels like someone hit me with gasoline and threw a match. I used to have nightmares of burning to death in a house fire. I really don’t know how I made it through months and months of this. It’s only been a few days and I almost threw my computer and a fist through the wall. I’m praying and I’m praying and suddenly I’m just really tired of praying. I start to lose faith. I can’t understand why. What am I supposed to learn here? How to suffer? I’ve mastered it and I’m tired. I just don’t see what I”m supposed to be taking away from this chapter of my life and it hits me. It’s not a chapter. It’s forever. Never ending. This realization has brought me to my knees. No faith, no hope. This type of pain a friend of mine calls ‘suicide pain’ because it is so intense, so relentless that you literally can not see going on. Heavy? I can’t believe I lost faith. I don’t think my mind was working correctly. It’s a very scary feeling.

It was the heart medicine. I stopped taking it and within one day I was ok. I haven’t even called the pain doc back to let him know that it was that. I am so afraid he will say there is nothing they can do to help me. And each day that I go without any treatment from my rheumatologist I go back like a week in time. My knees are already blown out and I need my cane, but I won’t use it. I have been afraid to check my email this week as I’m supposed to hear back from the rheum. I’m so afraid that he’s afraid. I know he thinks he almost killed me and I really don’t see it that way. But if he’s hesitant now in his decision-making then I have to start all over and find a new rheumatologist and the thought of that is just too much for me right now.

Well I feel better for just writing it down.

http://arimayasheart.com/tag/small-fiber-neuropathy/