Hi. I know this is probably a strange question but I wondered if anyone had peripheral neuropathy before their cancer was diagnosed?
I am 3 years post surgery and had a right hemicolectomy.
Before I was diagnosed ,during COVID, I developed neuropathy in my feet
It started after a long walk, just instantly. I kept speaking to a GP about it and after 4 months, I finally got a blood test which showed aneamia. The rest is history.
I had nerve conduction test for the neurology after my surgery but there was no large nerve damage. My GP said it was 'pribably' small fibre nerve damage and I was sent on my way with Gabapentin which I still take if it's unbearable.
I just wondered if it is possible that the cancer caused the neurology. I have never had chemotherapy.
It's getting worse and my GP isn't interested.
Sorry for the long story!
Anyone have any thoughts on this?
Hi Drama
I also have peripheral neuropathy in my legs/feet/hands and wrist areas. Mine started during chemotherapy and persisted despite changes in doses. I was told anything at 6 months post treatment was considered permanent.
It was discussed at my 3 monthly check ups over 2 years post treatment but to be honest it seemed to be considered just one of those potential things. I wasn't given any particular advice on it as the hospital were more focussed on checking for recurrences. I eventually consulted with my GP and was given amitriptyline. I didn't like the side effects.
What did help was getting a private physiotherapy assessment and being given specific exercises and advice. I was told it wouldn't take away the neuropathy but it would help build up the supporting muscles etc to help.
I have not heard of anyone having a diagnosis of neuropathy caused by the actual cancer- however that does not mean it has not happened to others- just it is something that I have not come across before.
There are other potential causes for neuropathy though. One thing that may be worth being checked for is diabetes? There is some more info here.
Peripheral neuropathy - Causes - NHS
I have found that mine has progressed but I am managing it at the moment. My GP can only offer pain relief which can take the edge off it however it does not have any effect on the numbness, tingling and loss of balance.
Perhaps give the Support Line a call and talk it through with one of the nurses. They are there from 8am-8pm daily.
I hope you can find something that helps, I know that at times it can be very frustrating.
Jane
Hi Eileen
Mine has been worse in the heat as well.
I had option of waiting for NHS referral for physio however it would have taken a few months. In the end I went to a local private physio. She was the first person who I felt really listened and gave practical tips to deal with it. She emphasized that it could not be cured but it could be made more manageable.
She gave me a set of exercises to help with stability, advised walking- I also find walking helps and the days I miss, I find I have more pain. She gave me exercises with a wobble board, elastic exercise band and spiky balls/rollers. I was also advised to try a static bike at home and to consider hiking poles when out walking. She also explained things in an understandable way- she likened it to retraining/rehabilitation after a stroke. You have to learn to do things again- at first you have to really focus and then they become more natural. She also said that anything that gets blood flow to the area helps.
We also talked about neuropathy gloves/socks- like the arthritis ones- I do find the wrist ones can bring a bit of relief. She also recommended supportive footwear.
Yes it is still there, but now I feel there are ways that I can help manage it.
My GP was clear that it was chemo induced neuropathy for me and that any testing etc wouldn't actually bring any changes.
I have wondered about acupuncture in the future.
Jane
