Living with Neuropathy - Welcome to the group

Thank you @johnbishop for this information! I have not heard of this treatment. I am concerned about the side effects of IVIG and I am just beginning to look into some treatments to manage this. I just saw this morning that there is a group here specifically for TS-HDS SFN!! Is this what you were dx with? I have so many questions for the group!

Oh! So different than my symptoms. I've only had an EMG and was diagnosed with Peripheral Neuropathy. Sharp, achy, pins and needles, but no numbness until this last year. It's now migrated into my ankles, up my calves and into my knees. I also have swelling of feet and ankles.
I do have to preface this by saying, I had a toe surgery in 2000 that progressed to CRPS (best to look it up - it's kind of complicated to explain) in both feet. I then developed Lipodermatosclerosis (LDS) about 5 years later. Lipodermatosclerosis is often seen in vascular insufficiency, but all tests were negative for vascular disease, so it was attributed to the CRPS. The doctors I've been to over the years have never seen CRPS, Peripheral Neuropathy and LDS all together. They all produce severe pain in some form or another with no cure, so the only real goal is to reduce the pain - which brought me to this sight.
I also just was told my Vitamin D level is 2!!! The doctor said that this can cause pain, numbness, tingling and weakness. I was started on 50,000 iu of Vitamin D3 once a week which immediately made my symptoms increase 10 fold!!! Which I guess is common. So.... my goal right now is to help my pain as much as possible. Thank you for your response!

Oh wow! You’ve been through the ringer! If I’m reading this correct, did your pain symptoms increase after taking vitamin D??? Hoping you can find the best solutions for you to manage your pain.

I'm new to the group, I have Type 2 Diabetes x 15 years and on an Insulin Pump (my choice). I was diagnosed with peripheral neuropathy about 10 yrs ago via EMG. Since that time, my pain, numbness, etc. have increased to where I am in constant, unrelenting pain 24/7. My feet, legs and hands. I've tried to manage it with Tylenol, but in the last 6 months it's become unbearable and I can barely walk, function or sleep. I went to my internist and he is recommending Cymbalta. I have a real phobia of taking oral meds and having side effects - like "breaking" something to "fix" something else type thinking (I hope that makes sense). Has anyone had good results from taking Cymbalta? Thank you!

I'm just getting where it's hard for me to even walk. i have always exercised regularly and have the means to do so, just don't have the strength.

Hi @carlyschneider, I can understand the still processing the diagnosis. It is a lot to take in and it's easy to get buried by anxiety. It's good that you are researching and advocating for yourself. Have you considered any alternative treatments or therapy to see if they might offer some relief from your symptoms?

Have you heard of Myofascial Release Therapy (MFR)? There is a discussion started by @jenniferhunter where you can learn more about it - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/. @artscaping has found considerable relief from her MFR sessions and may be able to share more information with you.

The Foundation for Peripheral Neuropathy also has some complementary and integrative therapies for neuropathy on their website -- https://www.foundationforpn.org/living-well/integrative-therapies/

Good afternoon @carlyschneider. I'm @artscaping or just Chris. John Bishop has asked me to introduce my experience with MFR, Myofascial Release therapy. If you have seen the video in this section then you have a pretty good idea of how fascia connects everything in our bodies. When it becomes restricted or tight, it hurts. A therapist has to have very sensitive hands to be able to find the restrictions. If you have accepted your diagnosis then you understand that there is no cure for SFN.,,,,,,and that it progresses in different ways and on different time schedules for different individuals.

Five years ago, I started with MFR sessions every other week and that was enough to mitigate the symptoms of SFN so that quality of life was maintained. Now, I have two MFR sessions a week plus at-home treatments I can manage by myself or with props. I actually moved here lock, stock, and barrel in part because the MFR therapist is excellent. The other reason was that I could not handle the wildfires on my mountain.

Two realities: 1. sometimes when an area in the body needs a great deal of work, you may not feel results for 24 hours. 2. sometimes when a restriction is super tight, it does not release without some discomfort/pain. You just have to let your MFR therapist know your tolerance level and when the source of the pain has been reached. It is such a relief.

May you be free of suffering and the causes of suffering.
Chris

Thank you Chris @artscaping for your insight and for reaching out. Honestly, I don’t think I’ve accepted this yet. I’m sure many on here share my story of feeling like the rug was ripped out from under them. Last year, I was a healthy, active 42 year old woman chasing my 5 year old son around, exercising regularly, enjoying hikes and my new treadmill and bam, within a year, all of that stopped. I’m still in shock. I’m still figuring out the cause and looking into treatments.

Can you tell me how you got started on MFR? Had you tried other treatments? I haven’t seen the video so I will look for it. I’m interested in hearing about everything that is out there! IVIG was recommended to me. Medications were also recommend which is a path I don’t want to go down if possible, at least not yet. Thank you again for your time and I look forward to learning more about MFR.
Carly

Good evening. I get it and understand your need. I am going to ask @jenniferhunter, another mentor with significant experience to step in and explain to you why MFR may be right for you. She will also direct you to the discussion on Connect.
Chris