At a loss. Don’t know where to turn to now for my husband.

Hello @rcfielding2, Welcome to Connect. I can't begin to imagine how difficult it must be trying to help your husband find some relief from the itching and burning symptoms of his neuropathy. Your husband is not alone with his symptoms and hopefully other members with some experience can share what has helped provide some relief for their symptoms. I did a search of Connect and thought I would share the link to the discussions and comments by other members who have mentioned itching and burning all over the body - https://connect.mayoclinic.org/search/?search=itching+and+burning+all+over+the+body.

Another thing that might be helpful advocating for your husband is learning about the condition and what treatments may be available to help provide some relief. A good place to start is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

@blt054 mentioned having neuropathy following Hep C treatment and may have some thoughts or suggestions for you.

@rcfielding2 I note your husband’s cardiac history. Has he recently started on a ‘blood thinner’ or changed to a different one?
I had this deep, intense itching when my symptoms of neuropathy first started. I do not have pain, just weird sensations, numbness, and loss of balance. I attributed the itching to the neuropathy.
Through trial and error, I discover it was my Xerelto blood thinner that was the problem. 1% of patients on blood thinners have intense itching. I now take a Benadryl with my Xarelto at 5 pm with food. The itching has stopped. My cardiologist had never heard this either.
Just a thought.
Best of luck. Itching can truly be a nightmare.

Abrocitinib is an eczema drug that could be prescribed off-label.
https://www.sciencedaily.com/releases/2024/06/240606001359.htm
Prayers for you and your husband.

My husband also had a blood clot after surgery.

Hi,
All sounds familiar or should I say feels familiar! Mine eminates from Autonomic polyneuropathy ( under Dysautonomia) which is all the nerve endings in the body are corrupted sending and receiving random signals good or bad. Itching can be a reaction to this and is for me particularly around the manly parts! Digestive issues, uncontrollable body temperatures hot or cold, gradual lost of sensation in feet and hands until all sensation is gone and they are numb, pain from the corrupted nerve endings, chest pain faining a heart attack, vertigo and sadly the list goes on. I won't bore you with all the details as it could be something very different that your hubby has.
My down fall was a serious bout of Champylobacter which started it all for me. I'm not sure if it was the initial cause or just the nail in the coffin, so to speak. We are still looking back to see what else has been happening when I ignored the symptoms and Dr's told me not to worry. I didn't worry and now I pay the price, not them.
It has taken me 13 years to get a diagnosis. Mine was picked up in one of my many trips to ED with uncontrollably high blood pressure and one attending Dr who had dealt with this before. Right person, right place, right time and bingo I got an answer I was not expecting, yes Dysautonomia controls blood pressure as well.
I have developed a high pain tolerance from years of pain so am able to work through the pain on most occasions, but not all. Then it is a quick dip into the opioid medication I keep on hand.
Cheers

@rcfielding2
Has your husband had EMG/nerve conduction studies of upper and lower limbs and small fiber neuropathy skin punch biopsy done by his neurologist? Has he had extensive neuropathy and rheumatology bloodwork done? What were the results?

Has your husband had any MRI imaging done of his brain/cervical/lumbar spine to see if there is any compression of spinal cord/nerve roots or abnormalities?

@rcfielding2
Has your husband had his thyroid and iron levels checked? Has he been to a vein/vascular specialist to see if he has vascular claudication? Neurogenic claudication would be if he had a compressed spinal cord/nerve roots. Both types of claudication should be looked into if not done already.

Sometimes it can be medication causing the problems. Some medications can make us worse instead of better. He might also be having an allergic reaction. You should coordinate with your doctor changes in medication. I have never been reluctant to slowly decreasing medication dosages and then eliminating a medicine to see if that helps but I can’t give that advice to you but your doctor can help him. I was able to determine gabapentin and pregabalin both increased pain for me and caused other body sensations which elimination of drug stopped. Read about all the side effects of the medicines he is taking. Oxcarbazine and its sister drug caused a terrible rash break out and itching like poison Ivy causes me so had to take steroids to eliminate and stop those two medications.

I cry every day and I talk to God all day long and ask for help. My wife, who also has health problems, does all the things I used to do and gives me loving support. She is depressed from it all and tries to be with friends on the phone or a visit. Somehow we move along. I think God is with us. Give God a try. Just talk to him about your troubles. The Bible says if you believe in Jesus Christ as your savior, he will come and help.