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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 6 days ago | Replies (5972)

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@beckiw814

My name is Becki. I am experiencing severe nerve pain in my left hand. I was diagnosed with peripheral neuropathy about 18 months ago. Within the last two weeks my left hand in particular has gotten much worse. My next appointment with my neurologist isn’t until December. Should I see my primary care doc?

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Replies to "My name is Becki. I am experiencing severe nerve pain in my left hand. I was..."

Hi Becky. Is there a pattern to where your pain is and what makes it better or worse? Is it worse at night? Do different foods increase pain? I have food allergies and if I eat tomatoes, I get pain in my finger joints. Is the pain better or worse with different arm positions? I ask this because nerves can be compressed anywhere by muscles and bones or injuries if your body is out of alignment. For example, I have thoracic outlet syndrome (TOS) which has several possible compression points were nerves are passing through that are on the side of the neck, in-between the collar bone and rib cage, and between chest muscles and rib cage as they go into the arm pit. There are other possible entrapment points in the elbow, etc. Mayo can diagnose and treat TOS, but a lot of doctors miss it and don't understand it. TOS does cause pain and tingling in my hand and arm and has affected circulation making my hand turn blue/ purple and cold. My treatment is physical therapy and my PT is also an expert level MFR specialist trained at the John Barnes Therapy on the Rocks clinic in Sedona. Myofascial release (MFR) is stretching the fascia that binds everything much like yoga does. If you are really tight, it takes a long time to work through the layers of tight tissue until things move properly again. You can look at myofascialrelease.com for information. There can be other causes for TOS like a cervical rib, and there are surgeries for it, but they can cause scar tissue which become a source of fascial tightness that can make it worse. I have TOS and had spine surgery at Mayo on my neck which did make my TOS more painful for awhile, but therapy has me making progress again with the TOS. If you have one side that is worse, that's kind of typical of TOS. A neurologist can evaluate for TOS, but I would look for one in a medical center that treats TOS, and there are not a lot of those. Look at University teaching hospitals. If you can come to Mayo, I would highly recommend it. Mayo also evaluated my TOS prior to my spine surgery, and they look at the whole person. If you want to learn about Mayo, there is a Ken Burns documentary about Mayo Clinic airing Sept 25th on PBS. I would suggest a physical therapy evaluation with an MFR specialist. You can find them on the MFR website or by calling Therapy on the Rocks (because not everyone pays to be listed on the website). This could help narrow down the source on your pain, and if it's caused by a physical problem, physical therapy with MFR can help. Here is some info on TOS https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Hi beckie I posted about my hand surgery in my left hand and I'm new to group about 2 or 3 weeks ago. So I really dont know how to go to these post but have pain in my dominant hand which is my left . They did a ANA test which came out normal but my diagnoses is complex regional pain syndrom/RSD. I has nerve block done but I have not seen a neurologist. No one said I needed too. What should I do. I go back to the doctor September 28