Disabled with Peripheral Neuropahy

[TinaM.]

Hi I'm a 2x Cancer Survivor (Colon & Breast). Due to my last treatments I have severe Peripheral Neuropathy. I have pain & numbing from the knee down. I wear AFO Braces on both feet and walk with a cain for balance. I want to be more active and lose some weight.  Does anyone have any suggestions of how I can do this. I'm new to fitbit and still learning. 

[MagsOnTheBeach]

My grandmother was unsteady on her feet.  She talked to her doctor who said for stability she needed to work on muscle strength. So she joined Curves and did the mini trampoline (it has a handle) and their circuit.  There is also a woman on PBS who in the early morning does exercises in a chair - maybe start there to build strength? http://www.shoppbs.org/product/index.jsp?productId=12293042  

For losing weight, there are so many programs, you might just check out a variety of books from the library and then choose a couple that seem like a good fit.  I use the book DASH for Weight Loss by Marla Heller.  I really like it because I can eat anything (just not everything at once).  

Good luck!!!

[PatinNC]

I want to offer congratulations on your victories over cancer.  I have no specific exercises to offer but do you have access to a physical therapist through your insurance?  They would be most helpful in designing an exercise program given your current conditions.  I've read on these boards that though fit bit reports in terms of steps if you have one of the HR models it's actually using arm  movement to count steps so as long as your arms are moving it will be accumulating data to give you feed back  (if your exercise needs to be done sitting down or lying in bed).  The other thing I've read is people put the fit bit around their ankle if they need to use a walker.  Good Luck to you.  

[GreatDaneMom]

Speak with your doctor first, of course. I have Myasthenia Gravis which can cause severe muscle weakness. I started using Fitbit to be aware how little I am active. Now I use it to try to increase my stamina (a measurable way versus I think I am doing more). As I grow stronger, I am able to walk more. Still far from what I used to be able to do but it makes me feel good that I can see an improvement. Plus it helps me to see how my sleep patterns may be effecting my stamina too. I wish you luck and encourage you to measure how you are doing against how you were doing the week before. Not against someone who does not have your difficulties. 

[TinaM.]

Thanks so much, your feedback is so much appreciated!

[TinaM.]

PatinNC yes my Neurologist sent me to a Physical therapist and he said that I was walking pretty good compared to most he sees with the same condition and he said  couldn't help me!! 

[MairPix]

Hi, well done on kicking the big C's backside! I'm a fellow peripheral neuropathy sufferers, and suffer is the right word with this awful condition. Mine comes from Pernicious anaemia though.

I found my local gym were brilliant with advice and support, I have particular problems with my balance as well as numb feet, lower legs and hands . I can use the exercise bike, especially the recumbent one where you sit lower with your legs out, and the treadmill fir walking as I can hold on to the side rails or the front one ( or on a good day just one side ! )  I also really enjoy aquafit classes as the water supports me but does provide some resistance. I get help if I need it to get on/off equipment and in/out of the pool but most times I'm ok ( aka stubborn ) 

[emili]

Hey Tina, I am joining in with a you rock for what you have been through and the tenacity you have. I was thinking swimming as well and the flex 2 is waterproof so you can continue to track your activity. But I think you need to personalize your goals for where you are and then go from there. I hope you have reduced your step goal down from the 10K because that may not be a realistic number for you so why have it? the hourly reminders to move, reduce that down too or turn it off. You are not going to jump up every hour to do 250 steps- I assure you lots of people don't- me included. Create the fitbit experience for you and celebrate your victories every day. Whether you walk down the street and come back, sit on a bike or wade through a pool- your victories.

[Lauria]

Hi Tina,

I also have severe peripheral neuropathy and it sure is a hard, painful master. Some days I just want to jump out of my skin to get away from it for five minutes.  I totally understand the burning, prickly, painful numbness that you are going through. I believe it started with iron iv infusions (16) for treatment of severe anemia in 2012. I recently went through 2 months of physical therapy and we worked on range of motion. She gave me exercise to do daily and I believe they have helped a great deal. Google "exercises for foot neuropathy" - you may be able to find them online. When I first got my FitBit, I would only walk in the mall where there were chairs every so often so I could rest if needed. I have slowly built up to where I can now walk up to 10k steps per day.  I honestly feel that the more I walk, the less pain I have. (Will your doctor help you find another physical therapist that understands your condition so you can try again?)  My podiatrist recommended a lotion called "Relief" which you can purchase on Amazon. It has a strong menthol smell but it does help with the burning pain. Another trick that I use are the ice packs (very soft and easily conform to your feet) by Core Products (the 'cervical' packs wrap around your legs easier than the square packs) also on Amazon. I keep them in the freezer and wrap my feet and legs each night before bed and when the pain is severe.  I have recently started to commit to losing weight and have lost 18 lbs so far.  I quit the sugary drinks like sweet tea and sodas because, for me anyway, certain foods can be a trigger (i.e. sugar) and I'm trying to eat more cleanly.  I hope you can find relief soon. Congratulations on defeating cancer twice! That's so awesome!

[TinaM.]

Lauria Thank you so much for all the information. I will try them all. Congrats on 10k steps daily. The most I've done so far is 3K. I'm not giving up, I will someday get to that 10k level. I too am trying to cut out sugar but it is hard when thats what I grew up on. Congrats on the weight loss!!

[brownoscar]

I think you are on track with trying to give up sugar. Take a look at this book written by a podiatrist about nerve damage and sugar: Sugar  Crush: How to Reduce Inflammation, Reverse Nerve Damage, and Reclaim Good Health by Richard Jacoby.

[pnw_eileen]

Tina, that is so Carly to hear but good for you for trying to figure out how to be more active.  I'm a 53 year old breast cancer survivor from treatment that ended about a year ago.  I have different complaints following treatment and am trying to figure it out, too.   

I go go to a fitness center.  On days that I feel pretty good I try to do more.  But there are days when I just try to find something that helps me to leave feeling better Than I did going in.  For me bike with little resistance can be a miracle.   Walking is ok some days and just not possible on others.  

Im going to try and friend you.  I'd love to see how your doing and see what you've come up with

[allentony]

Stop using your fitbit.  I was having the same problems in my leg. Felt like pins and needles. Then it went to the left leg, and then I was feeling it in other parts of my body. I took off the fitbit and everything was restored in a few days.