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Feb 20, 2019 · Living with Neuropathy - Welcome to the group in Neuropathy

Thank you for the welcome for this group. I have joined a few other groups as I am perhaps at the beginning of discovering exactly what all my symptoms add up to a finite diagnosis. Frustrated with the seemingly network of local docs lining me up with protocol tests and ambiguous answers.

I am a 64 yr old female, not overly active life style, now work part time, most recent struggle with some emotional trauma, and have been taking antidepressants and anti anxiety meds for several years. Over the past 5 years I have presented myself to my PCP with assorted complaints and looking for help and answers to persistent and variable pain and discomfort. His solution has always been let’s run bloodwork, CBC/Chem profile. Results have been mostly within range. Went thru two courses of mild shingles with this dr also within the last several years. Have been in enough pain and discomfort to go to local ER for some kind of explanation and relief. Tests come up ok, get sent home….follow up with your PCP. Last year after feeling very ill, exhausted, painful, and disoriented return to ER, tests run all ok, go home. After a week with nothing but feeling worse and more intense discomfort finally diagnosed with shingles again from a more observant female ER doc and Gyn on staff. That ran its course over a few weeks. This past fall I again went to my PCP complaining of random pain and discomfort in arms, lower back, more general,bloodwork. Following week on a Sunday in so much discomfort go to Immediate Medical Care and this doc suspects I have neuropathy and sends me home with Gabapentin and to follow up,with PCP. See him next day and snap he’s interested at last in hearing all my complaints of extended muscle pains in areas such as jaw, neck, lower back, both sides shoulders, arms, rib cage all the way around, inside knees, thighs, restless legs, general misery and I am frantic, impatient and angry.
Oh he thinks now after years of waiting for him to say it, you must have fibromyalgia but let’s run more blood to rule out other things….Lyme, lupus, RA, and other autoimmune disorders. They all came up somewhat in the normal range except a little elevation in inflammation markers. However, one test showed a high M spike and i had the fun part of seeing the Hemotologist next to rule out myeloma, short story is happily no multiple myeloma, but MGUS, which we have to keep an eye on. The by product of the bone marrow biopsy is a chronic stabbing nerve pain that radiates from the site where he punched my Iliac crest and down my leg. It grabs me so badly sometimes that my knee buckles. He doesn’t understand why so referred me to a neurologist which I will see next month.
Sorry to go on and on but it really is the first time I have sat down to play this all out into text. Now I am in the midst of figuring out which medications are truly going to benefit me, I am up to 600 mg Gabapentin 3x a day.
Doesn’t always help, so PCP had me try off label use med Nuedexta to add to the Gabapentin,after a week when the dose was increased I realized it was not for me since it put me into a trance like state. Now I am possibly going to try Lyrica in the next day or two and discontinue The Gabapentin. Overall for the “fibromyalgia” and fog some days are awful, some medium, and just had a few good days which bottomed out this morning. Do I really have fibromyalgia or can it all be something else? Any suggestions on which road to try next? I am changing to a new PCP next month to start fresh. I have been going to Physical Therapy every week for a few months for my muscular pain and trying some strength exercises but when I slide down again, she has to work on my muscles again.
Today has been a very frustrating day and I’m glad to have this Mayo Clinic resource to start a discussion and get your feedback. Thank you, thank you.