I saw a second neuroogist today. She was kind and listened and asked me why I came to her. I said I wanted to know if there were any other tests to do to see if nerves were damaged or if there were any conditions left to rule out. She said no. My MRI of my brain from April looked good, in fact, not remarkable enough to warrant surgery of any kind. My pain is too atypical and therefore there is nothing they can do for me since I cannot tollerate the anticonvulsant medications they use to treat this type of pain. She mentioned that she believes the condition going on in my head is Fibromyalgia, so to me that means chronic, neverending, misery. I'm very sad at that thought but guess I have to accept it. I told my husband I'm done with doctors now. I'm not going to chase this any more. I'll just take the drugs that I can tollerate and maybe eventually I'll get some relief on my own. He thought that was a good idea. I can't really afford to pay these doctors anyway, so I might as well just stick with my primary care physician and let her prescribe the pain maintenance meds.
This will be the last post in this blog. I guess the only thing I have left to say is that I'm too young to feel this damn old :(
I know how you feel. I couldn't tolerate the gabapentin/neurotin either. I have Atypical (constant) Trigeminal Neuralgia and Fibromyalgia. I am taking two medicines: low dose naltrexone for my fibromyalgia pain, and Gralise for my ATN. Gralise is new and very expensive. You can get a coupon online or from your doctor to make it affordable. They also have starter packs. The first month should have tons of pretty bad side effects, but afterwards the side effects should go away and so should the pain. Good luck!
ReplyDeleteThanks for the info. I'll look into the Gralise. I've gotten a lot of relief from the TN from my new chiropractor. I tried low dose Naltrexone for my fibro without too much success, but now I'm taking Relistor injections for Gastroperisis and it is helping with my fibro so that's a good side effect. This are looking up :-)
ReplyDeleteMy doc just told me that I have atypical fibromyalgia. what does that mean? All I could gather from what he said was that it is the worst form of fibromyalgia? ???????
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DeleteGaven,
ReplyDeleteI have never heard or read about atypical fibromyalgia. What are your worst symptoms?
Gaven,
ReplyDeleteI have never heard or read about atypical fibromyalgia. What are your worst symptoms?
Continuous pain, muscle spasms, no feeling in several fingers and toes, seizures, memory loss, daily problems comprehending what I hear and read, severe depression. And my body has rejected all meds except for sleepin pills.
ReplyDeleteMy doctor compared it to the different forms of diabetes. He said there was the kind that can be controlled by a healthy diet and maybe some meds. And then there's the form of diabetes that requires daily insulin injections, meds, and constant monitoring just to help cope. That's what they call atypical diabetes. And he believes I have atypical fibromyalgia.
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