Peripheral neuropathy

Hi again Jane03, sorry to hear this. So you are ‘only’ 4 months out from treatment so believe it or not, your body is still in recovery.

Lets hope your bone scan is clear….. are you taking abything like Adcal-D3 as this helps your bones?

For some the recovery from Peripheral neuropathy (nerve damage) can take a long time to recover with some folks (like myself) taking rather a long time. There is also a chance of long term nerve damage. There is no real post treatment ‘treatment’ that can fix PN…… it all about working it out from your body.

I am left with sever nerve damage in my neck were my mass was. I am 7 years out from treatment but in the early days (first)  18 months) I went to a circuits class at my local Maggie's Centre where I was given exercises to help build up my lost muscle mass but at the same time help the nerve damage.

I continue to do the exercises at home and even have the resistance bands to do some of the exercises. I find that when ai don’t do the exercises the pain comes back into working the areas.

In the whole it dies not hold me back from getting with life and apart from some paracetamol that’s all the pain meds I have in the house.

I was told that painful joints and muscles in various areas of my body was a sign of muscle regeneration - the more you do, the more inital pain will appear but push though and this will go.

Think about the pain you would have if you did a marathon without training?…… this is what your body has been through.

((Hugs))

Hello, thanks for your reply. I needed some perspective, 4 months is not long is it really. I'm back to work now and feel i should be 'better'. Not very realistic really. Im walking my beautiful puppy everyday, he has been my main therapy. The exercise definitely helps x

Yes most people think they should hit the ground running after a few weeks but it’s just not the case.

Walking is a great way of ‘working’ out some of the aches and pains. Could I suggest that you get a small stress ball to work your hands at the same time….. this helped my PN in my hands…… and try and slowly up the rate that you walk.

Yes being back at work is going to exasperate the pains….. my great SCN keep saying “No pain no gain Mike”

You may want to look at some local exercise groups, palates etc as it will help a lot.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

Check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run an online post treatment course…… they also run monthly Lymphoma Online Support Groups I highly recommend these groups as there is nothing better than talking with other who have walked the journey and if you are in Scotland you most likely would bump into me as zi run one of the group ((hugs))

Hi, I have peripheral nerve damage as well from r chop. I have no feelings in my fingertips. At first they were completely numb and felt like ice for a few months, noe after cycle 5 they no longer feel like ice, but now my fingernails are sore. It's the weirdest sensation.

I feel as though my fingertips are taped. It's very difficult to pick things up with my fingertips or to do anything fiddly. And the quicks of my nails are over growing, it's quite bizarre. My hematologist changed the Vincristin to Vinplastin I think it was, so far not much change although perhaps the fact that they no longer feel like ice means that there is a difference, and perhaps it's ever so slightly getting better. I have no idea if the feeling will come back or not. As soon as I can be mobile again I am most definitely going to go to Maggie's and throw myself into to a lot of what they have to offer, sounds like an incredible place of healing and wellbeing. I'm thinking that an exercise class will be amazing for the neuropathy as well as general healing. As soon as I'm able.

The "O" in CHOP (Oncovin, or Vincristine) is well known for producing neuropathy. It took several years, actually, for mine to dissipate. At first, it felt as though I had small coiled springs in my fingertips. When I touched an item, there would be something akin to a springy resonance in my fingertips. The more I used my hands and fingers, the more recovery I noted.  In my feet, the progress was much slower, but generally had less impact on daily life.

It is fairly common that improvement is slow and steady, yet best perhaps to focus on the "steady" aspect of it. This may indeed be a case in which time heals all wounds. Yet, we would rather that they healed more in accord with our preferred time table. Over the past 14 years, I have come to the conclusion that our complaints stand as evidence only that we remain alive.

As a strange aside, I have not been in active cancer treatment for over seven years time. Having received two Pfizers and one Moderna vaccine, strangely, my neuropathy has increased. However, my life seems to be one of the mythical rare occurrence, and I am still able with patience, to perform manuals tasks. It is a test of our resolve, I must say.   

Thank you so much for your message and for your advice. I will most certainly be  following your lead and sctively exercising my hands.

Congratulations on being cancer free now for 7 years.

Virginia

You are very welcome and all the best to you as you progress through recovery.