Small Fiber Neuropathy

Have any of you been tested for connective tissue diseases MCTD/UCTD, or shnogrens syndrome? Research!

I am new here and I can't find the subject I have.
I have a Small fiber Neuropathy getting IVIG INFUSIONS. I was told by a Neurosurgeon whom I trusted. ["PLEASE find Mayo Clinic, small fiber neuropathy and Hip Surgery"] before your hip surgery. My nerves in the whole hip were damaged badly from my groin down side my thigh, totally numb, hot and hard-that was 6 months ago! I can not go in the car! I get painful electric like shocks in that entire area. My legs very stiff, extremely cold. pain is so bad in my legs I can hardly walk. Leg pain, that my husband can hardly touch my legs when putting lotion on them. I yell out! This surgery had a domino effect from waist down. Anyone have the same experience? Please research before hip surgery if you have S.F.N.

Welcome @penn, I'm sorry to hear that you have nerve pain following your hip surgery. I'm not sure exactly what you are looking for but here are a couple of discussions that might be related.
--- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
--- Hip Surgery: https://connect.mayoclinic.org/discussion/hip-surgery-1/

Also, here are a couple of references on the topic.
--- Mayo Clinic Study Finds Nerve Damage After Hip Surgery May Be Due to Inflammation: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-finds-nerve-damage-after-hip-surgery-may-be-due-to-inflammation/
-- Nerve injuries associated with total hip arthroplasty: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884042/

Are you looking for a specific discussion or are you trying to connect with members who have nerve pain following hip surgery?

Hello, ruthrg,
No I have not been tested. I do have Sjogrens Syndrome. I saw a Rheumatologist once, he discharged me after I tested positive for ANA IgG and thyroid. o involved to explain. I do have Hashimoto's. I'm supposed to see the Rheumatologist tomorrow, If I can sit without pain in my car, I'll bring that up. Thank You

Hello, I am new to this group but have had small fiber Neuropathy for about 20 years! I take Lyrica and Cymbalta and they mostly keep the pain in control. I am otherwise healthy and want to exercise more. I have noticed that workouts on a Pelaton bike result in terrible muscle cramping at night. What is going on? Can this type of exercise advance a neuropathy? The last thing I want to do is make it worse. Any riders out there have the same experience and how do you treat this? Thanks.

Welcome @rcgoodm, I thought I would chime in while you wait for other members with neuropathy and experience riding a Pelton bike. I've had small fiber peripheral neuropathy going on 30+ years but only have numbness and no pain. I don't have a Pelaton but have a Teeter FreeStep Recumbent Cross Trainer and have used it pretty regular for the past 4 years. It hasn't made my neuropathy any worse. In fact, I think it actually helps with the circulation in the legs so that is a plus if you have pain or just numbness with your neuropathy. There are quite a few types of exercise that helps those of us with neuropathy - https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/.

I just found this site and I am so happy I did. I was exposed to to HSV 2 and I had typical flu symptoms within days. My neuropathy began within weeks and has now spread to my entire body. This has been going on for 4 years. I have had this conversation with over 50 medical professionals and everyone is confused. Most don't believe me and cast me aside, while others just move on. I truly believe most idopathic neuropathy is driven by viruses. The frustrating part is that there isn't much being done to address it.

Has anyone seen a neuropathy chiropractor?
Nothing seems to work for me

I just discovered this group. I too have small fiber neuropathy. It is severe, (no fibers were found), but I only occasionally have pain, in the form of cramping during the night. I see that I am very fortunate!

Good evening @blaircrossan, welcome to Connect, a very active Neuropathy Support Group. If I read your introduction correctly, you are saying that viruses from a previous medical condition caused your idiopathic neuropathy. When were you diagnosed with neuropathy? I am so sorry that you have not received an appropriate response from medical professionals. Are you taking any pain medication? Many of the Connect members have found that neuropathy symptoms first appear in the hands and feet.

Perhaps it would be best to start your discussions with other members after you have had a chance to gather information contained in the following sites.
https://www.foundationforpn.org/. The Foundation for Peripheral Neuropathy
https://neuropathycommons.org/. Neuropathy Commons

As a mentor, my experience comes from 11 years of SFN (small fiber neuropathy). Did anyone mention SFN to you? Did you have a skin biopsy to validate SFN?

I will look forward to your next post.
May your struggles and sorrows be eased
Chris