Vent about Permanent Neuropathy

Hi ladies....I've been away for a bit, just taking a break. I still haven't had an actual dx'd yet, but my previous symptoms seem to be getting worse. I have almost constant tingling in my finger tips now, feet are constantly cold and I've noticed this awful creepy crawling feeling at night in my legs and arms. I'm having zinger and sharp pains in my feet too...hard to describe actually. But the fatigue is awful, I'm not sure what this is about but I'm constantly tired. I'm just a mess right now.

I lost my job in early February and now insurance is gone so seeing a doctor isn't possible right now. I'm not sure how much is Femara, neuropathy or just plain depression causing my issues. I'd like to run away, but I'm too tired lol.

Anyway just wanted to say hi. Thx for listening. I hope for relief for everyone.

Hi, Joy,

I do know how you feel, except so far I have not had to deal with a cancer recurrence. I can't imagine, you must be very strong.

You were young when you had your first dealings with cancer, there are so many young women on these threads, I find it eye-opening. I was 61 when I had the cancer diagnosis, sometimes I think well, at least most of my life is over already. That sounds rather morbid, but it's true nonetheless. However, I was a very active and, I thought, mostly healthy person before that; and this has all come as a big shock to me too. I never felt elderly either until now.

I am hoping you will feel much better when you finish your HER+2 treatment. You say you have both anemia and neutropenia, it will be really difficult to feel good while dealing with those issues. I had neutropenia after my first chemo treatment, and ended up in the hospital for 5 days. If the hospital had blown up I don't think I would have known it, I was so weak and out of it. The anemia is going to make you very tired too. You have to give yourself some time to recover from all this, sorry you are given so much to deal with.

I take a lot of supplements too, although for the last week I have backed off a bit, since I realized I was taking way too much Vitamin D3. There was 10,000 IU hiding in my turmeric dose, and I was already supplementing with 5000 IU. So I had a blood test to check levels and will find out soon what that is. Then will get back on the supplement wagon. Say hi to Cinnamon!!

Tangandchris,

I don't know what is causing your symptoms, and I don't know the side effects of Femara. I do know about the weakness and fatigue that neuropathy can bring, and I do know that fatigue can be a long-lasting SE of chemo. Depression can also be a big cause of fatigue. The paradox there is that one of the things that really helps fatigue caused by depression is exercise, but exercise can be a challenge when you have neuropathy. I started an exercise program, and it really did seem to be helping my general mood and physical status, but then I overdid things one day and hurt myself, now waiting to be ready to start over again.

"I'd like to run away but I'm too tired." I can identify with that!

The cancer center where I was treated has a program that gives cancer survivors 4 sessions with a personal trainer, is there anything like that where you are? I really think it helps to get moving a bit. Just don't hurt yourself.

Elimar, 

I've often wondered if there was a connection myself since I had CIPN and Plantar Fasciitis at the same time too.  In all of my research, I didn't find a connection, but I do know that it is a common foot problem.  However, I did connect it to weight, age, and improper footwear (thin sandals).  I went to a podiatrist a few times and got cortisone shots, inserts, a night splint, and an exercise plan. I always wore proper shoes after that too.  I could have doctored myself just as well and saved money. It took a long time to get rid of it, but eventually it went away.  That was 12 years ago.  I have had peripheral neuropathy all that time, and I have never had Plantar Fasciitis again.  I have found that most conditions have so many possible causes that are not even documented or proven, and doctors just guess, just like us.  If you report anything that is not on their little list, they are not even concerned with it, except for a rare few.

Joy66, I found your post helpful. I probably just have co-existing foot annoyances but the side that has the plantar fasciitis now is the side that at one time had the CIPN going back to the heel and slightly up the leg and the other side did not. I Googled about the condition and decided to forego any doctoring at this point, opting instead to do stretching (maybe helps,) icing (no help,) and arch supports with nice gel heels (had these even before, but got deluxe models now.) Walking is a main exercise that I do, so if that gets hampered by heel pain too much I may check into the cortisone shots also. My one friend told me it took a year and a half for her plantar fasciitis to resolve, so unless I worsen I am prepared to wait it out. Thanks again; and thanks, maryna8 for your reply also.

Hey BosumBlues. Now that I think about it, she may have said to just save time to relax, which I pictured as lounging around with a book.

She suggested tai chi and also gentle joints water aerobics to aid in stability. The occasional near-falls seemed like flukes at first, but now I know I have to be mindful.

Hi, Ozoner,

We do all sound like we have many of the same problems, I also have the weakness and aching in my legs, the tingling and burning feet, etc. etc. About 3 weeks ago I somehow injured my knee, it is better but still not good. It is really hard not to go down the rabbithole of despair when things just keep going wrong. Exercise is what we all probably need, and it's what is so hard for us to do.

Please keep us updated on how the Cymbalta works for you. So far I have resisted the drugs offered, but am getting a bit more open to the idea. I did try the Neurontin/Gabapentin early on, but didn't like the drowsy effect it gave me.

Mary

Hey Maryn,

I just read that Cymbalta reduces the anti-estrogen effects of AIs!

And BosumBlues, I will definitely do the H2o balance moves.

Hopefully my MO will have some comforting advice about CIPN and Cymbalta. I will see him Friday. I really don't want to hear that I need to be back on AIs, just like my GP won't be pleased when she hears that Crestor makes the CIPN worse.

In a perfect world, I could purify my body of all chemicals (except Dr. Pepper!). I'm happy to have a good prognosis, but these drugs ain't for sissies!

Hi Ozoner,

I hope you don't have to go back on the Als if you don't want to.

I'm glad the Cymbalta is helping and hope you can stay on it if it helps.

Did you have a scan on your knee to diagnose arthritis? Mine started hurting about a month ago, it snaps, crackles and pops. The doc moved it around and thinks arthritis, but haven't had a scan.

Ozoner, I have not heard of Cymbalta interacting with the AIs; however, it does interact with Tamoxifen (possibly reducing effectiveness, since it uses the same liver enzyme.)

I have extreme weakness in my legs. I nearly drowned twice because I could not get out of the ocean.

I believe that both atrophy and CIPN have contributed to this. Exercise, combined with pain relief and rest, is my current focus.

Joy66, thanks for the info. I will check with my oncologist to see if it's okay for me to take. Sorry that you have to deal with HSP and breast cancer together. Wishing you the best.

Hi, Joy66

The last sentence of your latest post to Highhopes:

"I felt like I shouldn't have complained since they saved my life in 2002 and now, and I really think the doctors feel that way too."

I actually had a doctor tell me that after he put an injection right above my ankle for varicose vein treatment. I went back a couple of times complaining of the pain and he was dismissive. I went back almost a year later still complaining of pain, and I told him I thought it was tied to the neuropathy and that it was a rotten side effect. He looked at me and said "Well, you are here to complain about it!" And then proceeded to go into a rant on unappreciative patients. Enough of him!

Even most cancer docs are too dismissive of the side effects of chemo, my own MO told me blithely "Oh the neuropathy will go away as soon as you are finished with your treatment." Wrong, and I can't even go and complain to him, he retired on the last day I had chemo!

my CIPN didn't show its ugly face until right after the last chemo infusion That was 2 years ago next month. It got better but in the last week I have been less active and the shooting electric pains that have been gone for months returned. I had hoped the numbness, stiffness and poor position sense were going Tom be the only thing left and now it's back. Boo his

I have permanent neuropathy affecting all my extremities, besides other permanent neurological complications from an autoimmune disease similar to multiple sclerosis in its practical effects. My neuropathy has symmetry but my left side extremities are a bit more affected by it than my right side extremities. As to my feet, there is also nerve entrapment, effects of which overlap and compound those of my demyelinating disease. I can walk a little, but any more than a little gets me punishment (more suffering) from my miserable feet. My ability to stand in place is very limited. It has taken years of intensive treatment and a lot of apparent nerve death for my feet to feel so much better – over about nine years, the feeling of heat in my (now partly numb) feet has (generally) subsided from like atomic-hot burning to like white-hot feeling to like red-hot feeling to (usually) low like just under smoldering heat feeling, sometimes with diffuse stinging sensation. My hands also have paresthesia and feel about the same (usually) low smoldering heat, sometimes with diffuse stinging sensation. It no longer happens that any of my limbs might suddenly "go to sleep" – I quit driving until a few years after the last of those events. Nerve pain strikes – like lightning bolts and so many other painful strikes as if by electric axes, electric pitchforks, electric icepicks – still can come to any part of my body at any time. My nervous system also interprets formication and perspiration as very painful.

Among my other neurological complications are my memory problems, especially as to short-term memory [As some examples, often I immediately and completely forget conversations and other experiences and information until specifically reminded of them; and sometimes reading is very slow and difficult for me because I cannot remember my way through reading a sentence (by the time I get to the back end, I have forgotten everything about the front end, and it can take me many more tries over at reading through any single sentence to remember my way through and understand it)]; frequent long struggles for word retrieval; variable tinnitus; frequent balance problems; proprioception problems, so I must always be in lighting and keep battery-powered lighting devices around in case of power failures; very easy startling; noise sensitivity-to-intolerance; and my sense of time – especially but not only calendar time -- being so different from before. My ability to communicate in language has also got appreciably better from the worst of it some nine years ago. My abilities are variable but only limited anyway. [My sincere apology if my writing is incoherent.] In short, as to my cognitive impairment, it is all very like traumatic brain injury, because it is clearly brain injury, but injury by (disease) chemistry means. In addition, my arm use is very limited and most arm motions are painful from injuries, and my back is weak from decades of compensation to avoid the most painful arm motions. One arm, with its upper part (humerus) extended away from my trunk at all, can lift its own weight and about one pound; but it has considerably better lifting strength if it is close against my trunk. More than just a few reaches in a short while gives me bad backaches which shortly become incapacitating unless I (further) medicate myself and quit my arm use for a while. Also, much of the time I am extremely tired, and I am always at least very tired.

For pain management, I am on a steady diet of Naproxen, and I am also on Tramadol as needed for the duration, and I use Hydrocodone instead when I need something more. [ I do not use any opioids when I am going to be driving an automobile.]

One Doctor warned me to wear pressure socks for all my up-and-about times -- that there can be a vicious cycle of sorts going on with nerve damage and fluid pressure, each tending to worsen (or advance) the other. My miserable feet hate any shoes other than the kindest flip-flops (or, in the event of a polar vortex, some Hello Kitty slippers), so I wear the Futuro pressure socks with open heels and open toes. They are supposed to help support my nerve bundles and control fluid pressure on the nerves in my feet.

http://www.futuro-usa.com/3M/en_US/futuro-us/products/~/FUTURO-Therapeutic-Open-Toe-Heel-Knee-Length-Stockings-for-Men-Women?N=4318+3294508020+3294529207&rt=rud

For the first years of the worst of it all -- with my feet having like atomic-hot feeling and quick successions of lightning-like pain-strikes -- it was over two years of that (atomic-hot) degree of continuous pain -- I stayed in bed except for necessary trips to the nearest bathroom and to medical appointments. I also kept my tortured feet hung up in a large sling fashioned from a blanket tied in a single loop around (and perpendicular to) both of the upper side rails of this type canopy bed frame.

https://boltz.com/canopy-steel-bed-frame.html

The bed frame is every bit as sturdy as indicated, so it can be used as I described for improvised traction, or for improvised trapeze use, or for limb strengthening exercises with elastic resistance bands. One of our Boltz canopy bed frames is assembled with an over-the-door shoulder pulley placed around one of its upper side rails. By pulling from its cord below, I can easily slide it to any point along that horizontal rail.

Because of my other serious chronic illness (other than cancer), the condition of my feet, and because of my (variable) balance issues and proneness to falling, my Doctor advises me to rest as much as I feel the need to rest; to use mobility appliances; and to try to keep off my feet generally. [ Sometimes – usually about twice a month -- I get out for my little one's Veterinary care and for a little shopping and/or visiting.] I usually require a great deal of sleep, and otherwise, I mostly rest, down with my feet elevated. When I walk at home without a rollator, I tend to do my stepping and turning by sliding my feet.

I have a few options for fairly safe exercise. There is a small pedal-exerciser I can use while seated.

There are some rectangular plastic aerobic exercise platforms/steps with an ordinary walker placed over/around one end of the stack of steps (the stack of steps fits between the sides of the walker).

For outdoor exercise in nice weather conditions, I have an adult safety swing for which a swing frame is anchored in my yard. My husband uses a two-step polypropylene stool when he hangs up the swing and takes it down, and I use the same stool to get myself into and down from the swing. I can swing for about fifteen to twenty minutes before having to stop for dizziness, nausea, and vomiting.

Besides for their having under-seat and on-seat carrying capacity, rollators can serve as even some more handy pockets if bags such as Tyvek ones or soft canvas ones are kept fastened to their upper bars. Here is an example of a canvas organizer bag, having larger and smaller compartments, made to fit most any rollators or walkers. It can be fastened turned over, too, to keep the pockets and their contents covered. There are also accessories like cup-holders available for rollators and walkers.

Rollators with larger diameter wheels are best for making a smoother go over less smooth terrain. I have one with smaller wheels (and now failed brakes) for indoor use at home. For most outings, including most shopping trips, I have a Drive Duet rollator, better suited to indoor/outdoor use, and easily convertible to a transport chair. It is placed upright in the car so its handles will not be loosened from bouncing against the car floor. A single short bungee cord with hooks keeps the rollator from too much rolling and tipping in the car.

For when I need to go away from home without assistance, I have an old Invacare lightweight folding walker/rollator (in most respects, similar to the Drive Clever-Lite in present production). It has a rigid under-seat basket, so that part needs removal for stowing, but even with my limited arm use I can get it into and from the car folded or even unfolded without assistance – but with more difficulty to load it the unfolded way, by standing against the seat, gripping its back bar with both hands, then lifting, using my elbows as a fulcrum against my trunk, to tip the wheels up to where they can then roll into the car from my pushing forward at the handlebars. See, the positioning/arrangement of the brake grips keeps them from bouncing and bearing against the car floor with either folded or unfolded stowage during transport.

For most of my outings, except for while I am driving, I wear conforming silicone earplugs like these, but with the strings cut off at the handling tabs. These are rated for twenty-six decibels of noise reduction. Over them I wear my NoiseLESS Earphones, also indicated to reduce noise by twenty-six decibels. When the combination of devices is too much, I can move the earphone cups up to just above my ears, and they stay in place there, ready to put back over/around my ears. All the difference these make in noise levels makes me much less uncomfortable in any noisy settings.