Living with Neuropathy - Welcome to the group

Treatments last me a long time when I get them and the website is Oklahoma neuropathy clinic . Com like I said the treatment usually last about 26 treatments. The symptoms go away after the treatments. Sometimes you need what I called maintenance which means when the two treatments amount in case symptoms start to come back. So this procedure best procedure works in my opinion.

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.

Hello @et1054, Welcome to Mayo Clinic Connect. Thank you for sharing your symptoms and story. It sounds like you've been through the wringer with your PCP and docs. You mentioned you are changing to a new PCP next month to start fresh. @roch shared some great tips here on how to get off to a best start with a new specialist in another discussion that may help you prepare for your upcoming appointment:
— https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Mayo Clinic has some information that may help you answer your question about fibromyalgia.

Fibromyalgia: Understand the diagnosis process
-- https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401

Hello 👋 I am from Australia 🇦🇺 and have just started on this journey of discovery. This week I learnt a bit about what is happening. Still in shock, and not wanting to believe it. I hope 🤞 I will hear from you if not I do understand. I am living in QLD Thanks Teresa

Welcome to our group. The land of Oz is certainly at the right place to get help. Can you tell us a little more of your diagnosis. Do you have a cause? It is distressing to know you have neuropathy but it is something we have all dealt with. Looking forward to getting to know you and your condition more.

Hello @quiteachiver75 -- I think you are feeling what a lot of us have felt when we come to grips with the realization of our diagnosis. I didn't want to believe either. If the truth be told, I purposely ignored my neuropathy symptoms for almost 20 years before getting a diagnosis. I knew my toes and feet were numb and tingly for a reason and the doctor told me it's probably nerve damage. After I asked if they run the tests and find out it's nerve damage what can they do. The doctor said not much so that started my journey of ignoring and my wait and see attitude. When the numbness started progressing I decided I needed to know more and that started my journey here on Connect looking for support and learning as much as I can about my condition.

Pssst...right now I would be happy to be living in QLD. I'm old, cold, and tired. Of course I just finished my morning exercise routine on the elliptical so maybe that's part of it.

Are you trying to find answers for specific health questions or treatments?

YesterdayI got a numbing shot on my head it worked for8 hours and then I had a really bad attack which I burning tingling and other symptoms. And I took some CBD oil they gave me of relief. But the pain specialist did put me on another nerve relief medicine it supposed to help my head hopefully that works.

Has anyone ever noticed with the weather changes that it affects more tingling? Maybe it is just me.

Nope @anniemae, it's not just you ☺

@anniemae Oh yes my dear, the barometric pressure can wreck havoc with the issues that I have.... chronic Myofascial pain, accompanied by Small Fiber Neuropathy (SFN), There is a feeling of tightness and discomfort when it drops below 30. There should be some value in knowing the answers to how and why this happens. Today’s frigid high winds with low pressure may mean that this is a stay home and protect yourself day. That is what my body is telling me right now. Be safe, protected, and free of suffering today. Chris