Living with Neuropathy - Welcome to the group

I have newly been diagnosed with small fiber polyneuropathy and I’m quite discouraged. I have been a very active, physically fit person, and I am disheartened by not being able to do all of the things that I have previously enjoyed due to tingling, spasms, and exhaustion. We’re still trying to figure out what caused it and what can be done. I have questions about possible medication causes. I just had an Prolia injection and have found my neuropathy has gotten much worse. Has anyone reported reactions to medications like Prolia? Also, how about the Covid vaccines? I am a strong believer in vaccinations, but really would like to know if the Covid vaccines will cause an exacerbation.

Hi @robindancer5678, Welcome to Connect. Being diagnosed with small fiber polyneuropathy or any neuropathy can make you feel discouraged and disheartened thinking about what is happening and what the future will look like. Hoping your neurologist and/or team of doctors can narrow it down to a cause. Probably the best thing you can do for yourself is to learn as much as you can about your conditions, the associated symptoms and what treatments may be available to provide you with some relief.

You mentioned your symptoms got worse following a Prolia injection. While we wait for other members who may have experience with neuropathy and Prolia injections, I thought I would share this related information I found on the topic.

"Prolia also carries a warning about hypocalcemia, which is a low level of calcium in the blood. Tingling or numbness in the hands, feet, and face can develop as a symptom of severe hypocalcemia. If you have low calcium levels, you should not take Prolia."
--- Prolia side effects: What they are and how to manage them: https://www.medicalnewstoday.com/articles/drugs-prolia-side-effects.

Have you discussed the worsening of your symptoms following the Prolia injection with your doctor?

Hello, I am 60 years old and a type 2 diabetic. Last May I had a total right hip replacement done in (another state do to out of network insurance reasons) sent home the next day and ended up 2 days later in the ICU in sepsis shock. I recovered but was in a bad place mentally for several months. The wife bless her soul convinced me I needed to get back on my meds, which I stopped taking and go see the doctor. Long story short I ended up having some blockage in my right leg as well and had to have a stent put in. I then ended up with Cellulitis and now have an extreme case of Neuropathy in my right foot. I am now taking 800 mg of Gabapentin 3 times a day. 120 mg of Duloxetine once a day along with 15 mg if Meloxicam once a day and nothing seems to help with the extreme stinging in my toes and numbness in parts of my foot. I feel most the time these meds are a placebo and a few times a day I may get an hour or two relief and did I mention I get very little sleep. I could really use some answers on what caused this issue. and any suggestions of relief or am I just to put up with this pain for what time I have left. Been told and read my life expectancy at my age after having sepsis is 2 to 5 years.

Hello @joepringle, Welcome to Connect. I can't begin to imagine what you are going through with the neuropathy pain in your right foot with nothing seeming to help. I think all surgeries carry the risk of infections following the surgery. The Sepsis Alliance website has some information on the risk here - https://www.sepsis.org/sepsisand/joint-replacements/.

I know sleeping when you are having neuropathic pain is difficult to say the least. There are a few other discussions that might offer some suggestions.
--- Neuropathy Pain at Night: What helps?:
https://connect.mayoclinic.org/discussion/night-pain-2/.
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

Also, the Foundation for Peripheral Neuropathy has a list of treatments some people have found helpful here - https://www.foundationforpn.org/treatments/.

Have you looked into any alternative or complementary treatments for the pain or a pain rehabilitation center?

Thanks for responding John. I just had blood work yesterday and it was all within normal limits so I don’t think Prolia or low calcium is the culprit. My other theory about the onset of this small fiber neuropathy, some new gastrointestinal intestinal issues and strangely new onset asthma (at 66 years of age!) is that this may be the aftermath of having Covid in 2021. which three specialists have shared as a possibility. Anyone else have neuropathy after Covid? Anyone else a Covid long-hauler?

There are some folks that have mentioned neuropathy from COVID. You might find these related discussion helpful.
--- Neuropathy post-Covid infection: Is there treatment that helps?: https://connect.mayoclinic.org/discussion/neuropathy-in-feet-post-covid/
--- Post covid neuropathy/bfs?: https://connect.mayoclinic.org/discussion/post-covid-neuropathybfs/
--- COVID-19 Long Haulers: Symptoms lasting 30 days plus: https://connect.mayoclinic.org/discussion/covid-symptoms-lasting-30-days-plus/

Since I can't use compression for the lymphedema swelling, I do a manual lymphatic drainage massage on myself daily and see a trained massage therapist weekly. That's really all I can do at this point.

Hi. I was just diagnosed with peripheral neuropathy. I believe it is from scleroderma as I have CREST syndrome for 35 years. My hands and feet feel numb and cold most of the time. It does not keep me awake at night. Anyone else have these issues.

Hello @michellerahn, Welcome to Connect. Sorry to hear that you have joined the neuropathy club in addition to your CREST syndrome. Here are a few other discussions you might find helpful.
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
--- Icy feet and ankles with Small Fiber Neuropathy....anyone?: https://connect.mayoclinic.org/discussion/icy-feet-and-ankles-with-small-fiber-neuropathy-anyone/.

Am I reading your post correct that your hands and feet only feel numb and cold but are not painful?

There is no pain and my hands and feet do not turn blue. Thanks for the links.