I have read quite a few examples of patients’ dealing with CIPN and read medical articles which mostly refer to CIPN pain. I do not have the pain just the tingling, numbness, awkward walking as though I am wearing Frankenstein’s muckle boots and very occasional needle like ‘stabbing’ in one hand.
The neuropathy tingling didn’t start until after the chemo treatments finished but my nails, hands and feet, went yellowy brown and became weak during treatments which I always mentioned at the toxicity phonecalls.
I am thinking of trying acupuncture but while it might address pain according to what I have read there’s nothing to say it will have an impact on sorting the tingling and numbness. Does anyone have experience of using acupuncture to relieve this particular aspect?
Hi Goldens__ and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and I had chemotherapy as part of my treatment for breast cancer. Fortunately I didn't suffer with CIPN (chemotherapy-induced peripheral neuropathy) but there are lots of people in the breast cancer group who have.
I hope you don't mind me suggesting that you also post your question in the breast cancer group as you'll then connect directly with others who have this condition.
When you have a minute, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Goldens
My neuropathy started after my first chemotherapy session and became more with each session despite reductions in doses. I am not 2 years post treatment and the neuropathy remains.
I have all the altered sensations that you have but also do have the pain. For me the pain is manageable but it is the numbness and effects when walking and also when using my hands that has the most impact.
I had a physiotherapy assessment last summer and confirmed that there was a weakness on one side with my leg. I was given an exercise programme and although this does not cure the problem, I believe that the exercises are giving me some more stability. Personally I feel that any type of movement- legs, hands is going to help as blood is encouraged to the area. I am not medically trained but in my personal experience I have found it is helping- particularly with fine motor skills.
I find sometimes hot/cold alternating packs can help and also massaging the effected area can ease things a bit.
It is interesting you mention acupuncture and I would be interested in hearing if anyone has tried it and whether it helped.
This link has some more info that may be of help. It does mention acupuncture at the end.
Peripheral Neuropathy | Macmillan Cancer Support
Acupuncture | Macmillan Cancer Support
This final link is a search on peripheral neuropathy in the Chemotherapy group and shows some previous posts. It may be worth posting in that group for some advice as well.
I hope that you can find some relief.
It may be worth calling the Support Line and asking one of the nurses. The number is below.
Jane
I would say it settled at about 2 months post treatment and that is what I am left with. I had the physiotherapy assessment done privately and it was well worth it. Rather than being a cure, it is more about me managing the symptoms day to day and being proactive in doing what I can to limit the affect. I was given amitriptyline for the pain but did not take for long as to be honest didn't do a lot and caused worrying side effects.
I find being active helps and although I can get pain when walking- it is worth if I don't. The exercises are about building up the supporting muscles etc. I feel I stumble less now. I have tried compression socks and gloves and they sometimes give some relief.
My physiotherapist said that she could see that there was a difference between my left and right side. On the left side I could put my foot behind me and stand on tip toe but with the right side I had to look down to be able to do it. She explained it like it was good because it showed that messages were getting through the nerves but that the chemo had caused the messages to be scrambled- so there is an element of retraining them.
With my hands I do exercises with spiky physio balls- squeezing etc. I also touch each finger to my thumb one by one. When I started I found this hard, now I can normally do it.
So I would say the neuropathy is still there but the supporting structures are helping with the movement/sensations.
I think anything that may help is worth trying. I did wonder about reflexology too.
If you find anything that helps, let us know.
Jane
