PERIPHERAL NEUROPATHY SYMPTOMS

HIT

Hi Ladies  Maybe a dumb question but what are everyones symptoms for peripheral neuropathy.   I have asked docs a couple of times, but never seem to get a straight answer.  My feet/fingers never went really numb.  Things don't feel right, but I can feel.  Sort of a pins and needles sensation all the time. (not painful)   Wasn't painful at beginning, but my toes sometimes ache like anything now.  The worst thing is the stiffness - in my feet it feels like the muscles in the instep, in my toes and the front of my legs to my knees are tight.  Up to my knees gets very uncomfortable sometimes, in fact sometimes they are quite bad.    Stairs are a nightmare.   I can't sit too long, walk too long or stand too long.  They are slightly swollen with fluid I imagine - would these symptoms be fluid?

Pam

Afraser

Dear Pam

Treat this seriously, peripheral neuropathy is very variable but it can be longlasting and it can be serious. Some oncology nurses recommend soaking in iced water ( I have never tried that so can't comment) but my oncologist suggested Vitamin B may help. I don't know if it did or not, but the symptoms stopped developing almost straightaway and have slowly improved (two and half years). My fingers are pretty well right (they were never as bad as my feet) but I still have very patchy feeling in my feet. However no pain, burning or tingling, can stand on my tiptoes (couldn't do that for a while!) and it is still, very very slowly improving.

Anything that doesn't do you harm (always check first) may be worth trying as you really don't need this. But take heart that it can improve although it may take time.

If there is fluid, a lymphedema therapist may be worth consulting?

Good luck.

Pink66

Hi Pam, your description of PN is spot on..  Usually the nursing staff ask about it each time you step in for treatment. Depending on the description you give to how the treatment will be administered on the day..

I would seriously be getting someone to pay attention as if you are still on treatment at the moment they really need to know.

As for the fluid, I often have odema in my legs during treatment. My onc adjusted things including fluid intake during treatment to assist with the issue.  If it gets worse the med team need to know this too as they can use meds after treatment to keep the fluid retention to a minimum.

As for the stairs, this can be treatment or the fluid or both.

Sounds like you are having a rough trot indeed..  sometimes all of these things can be managed but with assistance of the med team. There may be some discomfort until treatment is over but they need to understand the trouble you are having.

sending hugs and hope you can sort it out really soon.
cheers, Sharon xoxoxox

HIT

Thankyou.  Nice to know there is still hope.Pam

 

HIT

Thanks Sharon  Nice to know it is PN.  I finished treatment ages ago (chemo June 2014 - Hercepton March this year.  Yep I did tell my onc, but he said risk of relapse too high.  Reduced my chemo dose because of weight loss is all.  My last appt I hit him with all the questions, and was pretty disappointed with answers.  He has included a whole lot of bloodwork for next appt (6 mths time) and I feel is hoping things will improve.  Suppose there is not a lot they can do.  Honestly I was pretty confident with my onc, but am not so now.  Oh well.  Just hope I never need them again for active treatment.  So hope fully time will heal.

Pam - But at least I know definately what it is - maybe I'm crummy at listening to answers - but they never told me symptoms other than numbness.  

 

Lisa_BCNA

Dear Pam,

It's Lisa from the Policy Team. I am sorry to hear about the stiffness and pain you are experiencing. I would encourage you to talk to your doctor about these symptoms as he or she will best be able to help and talk about what options you may have that would best suit your individual circumstances.

Many women find that it can also be helpful to get a second opinion, especially if they feel their doctor is not listening to them or they would like another perspective.

All the best,
Lisa

Pink66

Hi Pam, not good that you have been left feeling this way..  I certainly recommend asking more questions..  Do you have a GP that you have faith in and that understands where you are coming from?.. Perhaps they will be able to work through all the symptoms and get to the bottom of it for you now rather than you wondering for the next 6 months. Even just understanding what is actually happening woould no doubt help so very much.

everyone is certainly different but for me I found B12 helped and also foot massage and tai chi..  It did not make it go away but it seemed to ease my symptoms. 

Hoping you find your answers really soon and are able to get some relief.

Cheers, Sharon xoxox

HIT

Hi Sharon  Head, brick wall if you get my meaning.  After rarely going to docs before BC, I am astounded at the lack of good gps.  The good ones in our area aren't accepting more patients.  Found one recently - and he left the practice (poached I imagine).  And I've found that swapping isn't good, the various surgeries don't seem to want to forward my details!!!  Maybe its me?  I have had 4 lectures on chemo being "quite damaging" and giving myself time???  I know I hit them with too many symptoms at once but what do you do?  Currently I'm waiting on more throid tests (new disease I got after chemo), cause that is doing wierd things.  The PN all I ever asked was what were the symptoms?  My onc says B12 doesn't help, but many ladies have said it does.  Worth a go.  Got some a while ago, then was told to start taking vitamins (onc) so stopped the B's.  Could probably take both.  And of course I'm meant to be going back to dermatologist cause of a rash that they think is a muscle wasting disease, that has strong associations with getting cancer again, accept I haven't got the muscle wasting and got the rash during hercepton... just don't know, can't see the point in paying $200 to be told wait and see.  Oh boy whinge, whinge - good points hit the wall tiredness has gone for 5 days yahoo  bad news dizziness has returned... Okay vented once again.  And I'm not that bad so I need to suck it up.

Pam