Diagnosis: Idiopathic Peripheral Neuropathy and Restless Leg Syndrome

Hello @mikead63, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy with just numbness and some tingling but no pain. I posted my neuropathy journey along with other members in another discussion here https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

My best advice is to learn as much as you can about your condition and what treatments may be able to provide some relief since there really isn't a cure. A good place to learn more is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/. Another good site for learning about neuropathy is Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

One thing that really helped me was being able to connect with others here on Mayo Clinic Connect where I could learn what has helped them. A good place to start is to scan through the list of discussions in the Neuropathy Support Group here to find ones that you can relate to the symptoms - https://connect.mayoclinic.org/group/neuropathy/.

What symptoms bother you the most?

I have leg and body neuropathy
And noticed a connection to allergic reaction to sprays used on rooms for bugs and termites.

Thank you John! I really appreciate your recommendation and will definitely follow up on them! The symptoms that bother me the most at this time happen when I sleep. I wake up with burning sensations in my feet along with feeling like my feet and ankled are hard and my toes are difficult to move. Almost like my feet are a different part of my body.

In addition to the gym spend a lot of time in the swimming pool walking backwards. Vibrations for the feet are also helping me a lot.

You might want to scan through the discussions and comments on burning feet to learn what others have shared - https://connect.mayoclinic.org/search/?search=burning+feet. Biggest issue I have with my feet along with the neuropathy is swelling from lymphedema which is mostly in my right leg. The compression socks I wear help but make things a little worse neuropathy wise due to the constant squeezing of the legs.

I hear so many who have been diagnosed with neuropathy talking about tingling and numbness. My EMG supposedly revealed neuropathy. But I have severe pain, not much in the way of of pins and needles and numbness. Does anyone else have a similar experience. I just started PT in hopes of restoring some muscle strength,

Hello, @heisenberg34 ,
I was diagnosed with distal symmetric axonal-demyelinating sensorimotor peripheral neuropathy in 2021 after years of severe pain during the night. It would start around 9:30 or 10:00 p.m. and at its worst presentation I could do nothing but literally scream into my pillow. Pain that severe usually lasted "only" 10 minutes or so.
Now, after 4 years of P.T., a number of lesser-known but very effective therapies, and the right combination of Tramadol and Pregabalin, my symptoms are more in line with what you are describing. About a year and a half ago restless leg syndrome showed up and I've been on Ropinirole for it (very effective). I'm 78, live in Iowa, and maintain my own home.
I pray you will find the therapies that ease your symptoms and restore muscle strength.
Peace, Barb

Wow! It would take me ten minutes to say what you were diagnosed with. Sounds horrible. I am 77, but still trying to come to grips with the fact that I am elderly(!) and in poor physical condition. Just four years ago I was cycling 30-50 miles a week. Skiing a couple of times a week. Then things changed in a heartbeat.
K
Just a year ago I was doing a lot in and around the house. Not able to do much right now. I feel bad for my wife. We had planned on traveling and camping. That’s pretty much gone.

What kind of PT exercises did they have you doing? I just started and I’m afraid my therapist may just continue with the standard exercises. When I do even gentle exercises, it ramps up my pain to where I have to stop. Did you experience that and just fight through the pain?
Hope you continue on the road to feeling better.

Thank you! My exercises are chiefly targeting balance and gait, because that's where pain meds control nothing. At her therapy clinic, my physical therapist had me practice walking on uneven surfaces mainly using adjustable bars or my cane. At home, all my stretch and movement exercises while standing have taken place along my kitchen countertop and sink: leg stretches, squats, side-to-side walking, marching. I was not a fan - lol. At the clinic I always opted for a OneStep recumbent bicycle which engaged both legs and arms, and a vibration plate. Now at home most of my exercises are done seated on a chair without arms, because I have no fear of falling while seated. Backward stretches, side-to-side stretches at waist, "marching". So, exercises are not explicitly for pain, numbness or tingling.
At the beginning of January she discontinued accepting all insurances, including Medicare, because reimbursements had become too low to support the rising living and work expenses that we're all feeling. I have not looked into another therapist (yet?) - her hands-on myokinesthetic treatments absolutely helped with the pain and discomfort in feet and hands. But I did invest in a recumbent bicycle and a BEMER system which I also was using at the clinic. Best to just google that if you're curious - it's complicated but I am elated with the decision to purchase my own.
If I had pain during any exercise, I was to stop and she would have me try another approach. This also was the case with my O.T. at the same clinic, treating the carpel tunnel and neuropathy in my hands. I was never into athletics, even as a young person, but my husband and I loved to camp (glamp for me - ha) and do day trips. He passed 11 years ago and I sold the camper. I share your sadness at having a disappointing adjustment to life in a new normal ~ but I can't complain ~ God gave us so many good years, times, and memories. I'm super thankful for them all.
I wish you better days and nights ahead! And also, answers for treatments that are restorative and affirming. Keep us all posted if you can.
~ Barb

Thank you for sharing your incredible journey. I have been on the verge of giving up and just staying in bed(it's the only position in which I am only pain-free. How crazy is that?!). I need to remind myself of God's promise: "I can do all things through Christ who strengthens me". I guess if He doesn't give up on me, I shouldn't give up on Him.
How long before you really felt better? I would really be excited if I could wake up some morning and be able to say. "Man, I feel a little better today". I will try to update if I have any improvements.

Chris