Autoimmune illness and small fiber neuropathy

Hi, I am in the middle of the process of dealing with peripheral neuropathy. It presents mostly in my feet and toes and in the last few months in my fingers and hands.

I have had an EMG test, which found one issue with a nerve in my lower back - mild chronic left L5 radiculopathy - but doesn't explain it all. In fact, I don't experience any shooting pains down my legs. But, lower back-wise, there is a burning, sparking pain around my waist and upper buttocks. Gabapentin has improved this and also the sensation of electrical shocks racing up and down my spine. Neurology is going to do some biopsies in February to check for (I think) protein buildup in the tiny nerves, or something like that. The investigative process seems to take a long time. I first went to my primary about foot pain back in February after the pain kept me from sleeping for 3 days.

In March, they did find my A1C at 6.8 but by June it was down to 5.5 and I'm told that my Diabetes really wasn't severe enough to cause the foot and finger pain. And the pain has increased since then. If it was the Diabetes, I'd expect the pain the stay the same since June or gradually get better.

I am surprised at how fast the pain has progressed. I was started on Gabapentin (300mg 3 x a day) back in Feb and am now up to 1200mg 3xday + 90mg Duloxetine 1xday. Do these things usually progress so fast? There was actually a hint of this going back about 15 years when the bottom of my feet started to feel like I was walking on stones. My doctor sent me to a podiatrist back then and they found nothing unusual and nothing more was done. It stopped me from being a runner anymore. That sensation stayed steady until the start of this year when it suddenly took off.

It was in March of this year that a Doctor (on an internet "get answers" type site) said I should see a Rheumatologist - and that was due to a question about degenerative lumbar, not the neuropathy. Since then, other people in my life who I consider well-informed have brought up Rheumatology when I tell them my symptoms. But, so far, all the Rheumatologists I have contacted want a referral. My primary isn't prepared to give me one, yet. How do I convince her? Or should I be asking my Neurologist?

Depending on the organization of your medical clinic, you could ask your neurologist for a referral. They also make referrals to rheumatology. This approach is more likely to work if your neurologist and primary care doctor are not in the same clinic system. Some medical clinics only allow the primary care doctor to make referrals. In that case, you could ask your neurologist to recommend to your primary care doctor that she provide a referral to rheumatology.

@machak Welcome to Connect. I know it is frustrating to not have clear answers or a path to wellness when you have so many unexplained symptoms. I have at times lived with some diagnosis uncertainty myself. I look at it as a puzzle to be solved one piece at a time, and also I understand how easy it is for the journey to run aground when no one looks at the bigger picture of how one issue might influence another. Sometimes doctors see what they expect to see with their own biases. Sometimes we just have to keep asking questions of why something is. I don't have small fiber neuropathy, but I wanted to share with you an author who writes about how adverse experiences and their stressors earlier in life can influence autoimmune diseases later in life. She covers many aspects of recovery and has herself recovered from an autoimmune disease. She has several books and is a medical/science writer. Here is her website. https://donnajacksonnakazawa.com/

My experience with nerve issues are as a spine surgery patient and also having thoracic outlet syndrome which causes nerve compressions. TOS can cause half of my chest not to expand enough on inhalation which causes issues with trapped phlegm due to allergies and asthma and chest tightness can make my heart speed up a little bit. My physical therapist can relieve this with MFR (see later paragraph). I also have Hashimoto's Thyroiditis, an autoimmune condition, and evidence in my case points to old silver amalgam dental fillings causing problems with the thyroid. It's been many years since those fillings were replaced with safer materials, and my blood tests now show I am borderline for this, but after years of it, my thyroid is spent and I require thyroid medication. I did see dramatic improvement in levels of antibodies against my thyroid after removal of the old fillings.

Another discussion you may be interested in is about Myofascial Release which is a physical therapy for stretching fascia which gets the body moving again, and helps re-hydrate stuck tissues. It can help a lot of issues. It can help physical issues and help restore lymphatic circulation and electrical conductivity. If issues are caused by a physical compression that affects nerve function, MFR might be able to help. There is a provider search on the MFR website. The discussion has a lot of resources in the beginning pages. Here is our discussion. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I hope there are some ideas here that might be useful. I also have gained a lot of knowledge and health being the patient of functional medicine doctors or environmental allergy doctors. The practice that began this field of medicine is the Environmental Health Center in Dallas and they sell volumes of their research for doctors. Here is the website. https://www.ehcd.com/ There is a provider search (Blue button at top right corner of website) for the American Academy of Environmental Medicine https://www.aaemonline.org/ I do like how functional and environmental medicine looks at the big picture.

If you find something that helps, could you please check back and share your experience? I wish you success in your health journey.

When you get some answers, please share. I too have been diagnosed with small fiber neuropathy and Sjogren's Disease. These diagnoses were the result of the search for reasons for internal trembling, waking me up ever night. They started twenty months ao, I think from the cancer drug, Letrozol. Thisis certainly not confirmed by the cancer doctors.

Hi @bardhyl, Welcome to Connect. I also have swelling in my legs and feet during the day but I think it's related to my lymphedema diagnosis and not my small fiber neuropathy. I do wear compression socks which I hate but it does keep the swelling under control. You mentioned your Lupus diagnosis was under control for 45 years before you had COVID. Here's some information you may already know but thought you might find it helpful - What Causes Lupus-Related Swelling And How Is It Treated?: https://lupus.net/symptoms/swelling

Do you think your feet swelling could be related to your Lupus?

what test is for lymphedema diagnosis?