peripheral neuropathy progressing in legs

[sunflower]

Greetings,
After receiving radiation for breast cancer in 2016, I developed arthritis and zapping pain in my fingers and toes.  My fingers have almost recovered completely but it is progressing in my feet and legs.  Jacuzzis are very uncomfortable for me (pins and needles).  My feet feel cold on the inside (not outside) and I wear socks to bed. The cold in my legs is creeping up so I wear knee socks most of the time.
1 - Has anyone found a connection between radiation and autoimmune conditions or Sjogren Disease?
2 - Is there anything I can do to slow the progression of numbness and cold?
3 - How concerned should I be?  I'm in Canada and I doubt I would ever get an appointment with a rheumy although I saw one in the beginning.  My lip biopsy was seronegative but I have all the sicca symptoms.
Sunflower

[Kathy57]

Sunflower,

I wish I had some good info here but I don't.  😞. My husband has a lot of issues with peripheral neuropathy in his feet and stumbles frequently.  His neuropathy has been caused by his extensive chemotherapy for cancer.  He did develop Vitaligo after chemo and radiation.

Good luck to you.

Kathy

[sunflower]

Thank you, Kathy.

[meirish]

sunflower, I am sorry to hear that you are having more issues. I have some of this in my hands and up my arms at times. It is really a bugger to figure out why. I have had chronic carpal tunnel in both wrists for years and have had 3 surgeries and was told I need surgeries in both wrists again. Drs have put this off for years as they feel that it is from my autoimmune disease and inflammatory processes and that the carpal tunnel will just come back.

I also had a spinal fusion in C4-5 (neck) in 2017 and just told I need more surgery to add C6 to the fusion due to deterioration of my vertebrae. I am putting this surgery off because of my age and because my primary is not very excited about it. She hasn't said no but her face says it all. I am a retired registered nurse so I know the risk of this surgery at my age of 81 is very high.

Now, I just have to tell you that after having all the ailments I have had---must add that I am also type 2 diabetic and that can mean neuropathy also. There are so many causes of all these numbness issues and so many ideas on what to do about it. My feet are occasional issues and I put on the TED hose or the white up to the knee support hose that one wears in hospital after surgery. That doesn't cure the problem but helps knock down some of the discomfort so sleep is easier. My hands are the big problem. Hard time feeling things and drop a lot of things. This is a problem every day with the numbness and discomfort. I have a terrible time typing and spend 1/2 my time correcting my spelling.

Have to tell you that when cleaning house years ago I put on vinyl gloves and I noticed that my hands didn't seem to throb as bad. Around this same time I bought a pair of the black support or stretchy gloves without the fingertips that they advertise on TV sometimes. They are found at Walmart in the isles up by the cash registers with the products that are sold mostly from the TV ads. They are 20$ a pair and are washable by hand. I have several pairs .Never expected them to help as much as they do and I love them and wear them off and on during the day every day. They take the edge off of the symptoms and it keeps me from needing to take tylenol. I take as few meds as possible (especially tylenol) because I have chronic kidney disease.

Now, I have to add that wearing these at night drives me crazy so I starting buying the vinyl gloves by the 100/box and wear them at nite. This works so good for me. Something about the pressure of the gloves on my skin seems to cut down the the funny pain issues of neuropathy. Also, with Sjogrens our body doesn't sweat like it should and wearing the gloves helps my hands to trap any moisture from wearing the gloves and in the morning my hands feel more normal. I am one of those people who will try a lot of weird things to treat issues so I don't have to take pain meds.

Also, it helps to do a lot of searches online about neuropathy and any terms you can find will add to the search. However, it seems like I haven't found any miracle treatments so my simple ideas help me for now. Good luck. meirish....I"m always long winded.

[sunflower]

Thank you so much.  I appreaciate every word!  You are far worse off than I am and if you haven't found a way to slow the progress, surely I won't either.  I'm thankful to not have problems with my hands except a few spots of nerve damage.  For my cold feet and legs, I wear socks for night and use extra blankets.

I was interested in the fact that we Sjogren's folks don't sweat normally.  That makes sense with our dryness, and it certainly is true for me.

Best wishes, Sunflower

[Scottietottie]

Hi 

The trouble with autoimmune stuff is that the diseases sometimes travel in packs. Have you had tests for thyroid recently - because if it goes under active it can make you feel really cold. Just a thought.

I get peripheral neuropathy - but unlike you I feel as though areas are burning. seems to go with some autoimmune stuff. Seeing a neurologist later this year and may be getting a muscle biopsy for small fibre neuropathy.

Take care - Scottie