Vent about Permanent Neuropathy
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well guess I will basically talk to my PCD in Aug when I see her next. the crushing feeling in my toes is usually after I have been walking a lot so I am not big on hiking around. I have a pal who has hip issues so we poop out around the same time. I took the Gaba thing years ago for a pain in my thigh, thought it just made me dumb feeling so while I likely still have the pills upstairs, not looking to do that
thanks for your feedback, least I am not the onlyone
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I've had several neurologist appointments and he pretty much just tested me and found that there was some nerve weakness in my legs, but said there really wasn't anything he could do... So it does make me wonder why I went (and still have another appointment months away).
I didn't have pain ever... but every now and then I did get super-sensitive feet--felt like the bottoms of my feet had been rubbed raw when I walked on them--but for brief periods, and didn't hurt if I took my weight off them. I haven't had that problem since I stopped chemo, thankfully!
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Bosum- I feel for you but do you think maybe just getting to know some new people, does it have to be a man? sorry but when I joined my gym, I got a double hit.....exercise helps all the aches and my gym has helped me find a lot of new pals. I just came back from the gym and it helps me with all sorts of things.
Good luck on the job thing
I felt the same was about the neurologist guys, they just looked at me and asked if I had had any more cases of vertigo...the foot numbness is more recent but not planning on seeing one of those guys. My feet feel numb today, even felt that way in the pool when I was swimming this morning
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ok, well maybe joining a gym, or walking club or something like that would also help you meet a guy
I remember a camping trip, picked up 2 dif guys on the same weekend,0 -
oh yes, it was right after I finished a Dale Carnegie class on how to sell. I did Dale Carnegie on all the guys! It works well, just remember, everyone's favorite thing to talk about, it themselves!
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BBlues, I usually don't come out too strongly to tell people what to do or not to do, but I really hope you just say no to the skin punch biopsies. They sound like a crock, and your chance to meet anyone as a result of a biopsy is almost nil. ;-)
The areas on my feet that are numb are the exact same areas as they were two years ago, but the numb areas do have a tiny bit of feeling in them. So, they have changed but I don't know if I would go so far as to call it real improvement. At least they feel like numb feet and not blocks of wood anymore. Kind of feel like this is the plateau I may be permanently stuck on.
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Eil - yes, that's it exactly - my improvement is numb feet instead of blocks of wood or ice. But my feet are still cold all the time. The numbness still runs up above my ankle. Strangely enough it seems to be worse when I first wake up in the morning. I have started trying to go barefoot around the house. I understand that's a no-no since you could hurt parts you can't feel, but I'm trying to pick up different sensations on the bottom of my feet (it's an experiment anyway). My fingers have improved significantly. I started out not being able to do up the zippers on my pants. Now I can pick up dominoes - not quite coins yet, but now that I have fingernails again I can fake it. There's still some numbness but I'm not likely to slice off my fingertips while I'm chopping onions.
Proud - I'm in a water aerobics class and you're right - numb feet are really weird in the water. I am wearing water shoes to protect them from injury. Never thought of Dale Carnegie for meeting guys. Great idea.
Bosum - I agree with Eli - nix on the biopsies - even if they're free. OK girl, I'm getting tough - no it doesn't have to be a man. I'm going to send you a PM. In the meantime, there's no snow anymore so you should at least walk. That's free. Hugs.
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It's funny how my mind works or in this case doesn't. I had a DIEP two and half weeks ago and while it was rough at first I'm healing well. I just keep expecting my fingers and feet to heal as well. I know I'm getting over the surgery because now the numbness is bothering me than the incisions are. The more I'm on my feet the higher the numbness spreads. Just thankfull I only have occasional shooting pains.
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My chemo was in 2008 and the pain and frustration is still there. My hands and feet hurt constantly. I am on all the vitamins and herbs mentioned and then some due to my husband's persistence. I am on Gabopentin (insurance won't cover Lyrica). Hydrocodone/ acetaminophen. I am also on Femara which only adds to the joint pain and throws hot flashes on there as a bonus.
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has anyone here seen a neurosurgeon for issues? I am dealing with nasty back issues and just had a MRI ordered by an ortho guy, I have the stupid foot issues as well as bad back. A friend who had had several surgeries for back and neck said I should be talking to a neurosurgeon if surgery is indicated and based on stuff I see, maybe that is the road to go
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BBlues & Proud, I can just hear the frustration screaming out of your posts and, believe me, I do understand it. So sorry that BC is continuing to take a toll on so many of us. We can start each day thankful that the cancer has been dealt with, but by the end of each day lived with pain, numbness and collateral damage, the thankfulness wears thin. Now we are living with something else that brings us to this thread, ranting at times...how's that for a lifestyle?
Proud, Your back seems like a separate issue and maybe surgery does merit consideration BUT (throwin' my big But in) keep in mind that a surgeon is going to be happy to cut on you (in the same way that a medical doctor is always happy to give you a new drug.) I have had a couple times in my life where I was offered a surgical "cure" for something, but shied away from doing it. After a few years, both conditions resolved without me ever having the surgeries I was told I needed. It never does hurt to explore your options, tho'.
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elimar, thanks and I am researching lots right now. I see the ortho guy tomorrow with the results of my MRI. I am looking to find a really great physical therapy place based on whatever showed up on the MRI. I am resistant to cutting unless all else has been considered
it is funny, in the morning I am so stifl it is hard to stand to brush my teeth but now with the benefit of lots of heat and some rest, back is fine
course I am sitting down0 -
Just saw something on the news today about a study regarding back problems, surgery and Pt and it said that PT can really help vs surgery (also helpful, but PT could be as good), but the price seems to keep people from getting it!
Keep venting here all you wish! You all have tough situations to deal with and plenty of frustration which should be vented somewhere! I wish the best to all of you. At the very least, keep hanging in there. There might be some treatment available down the line!
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April, that is good news to me! dang but I am stubborn and refused surgery for over active bladder and chose to learn to do kegels correctly and well it worked for me! PT does require work and the right set of docs so that is were I am at now
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well working with a new spine doc who does not do surgery. I keep doing the PT at home and with a therapist and it definitely is better but last night I had back spasms again
so this doc thinks I need an anti inflammatory but since I am allergic to NSAIDS, have not been taking anything, we are going to do some testing as I have god awful feet and can not walk far with out pain
so still working on the dang neuropathy
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Proud - so glad this thread hasn't disappeared & glad you've found a new doc who might help.
I'm 19 months PFC (9 months post Herceptin only). My fingers have improved enough that I can usually ignore the numbness that's left. I did go to buy new sheets today and was brought up short that - no - I can't really feel the fabric. My toes & especially the balls of my feet are still mostly numb & I'm often aware of numbness up to mid calf. I've been trying to go barefoot sometimes just to see if I can feel the difference between carpet, cement, lawn, etc. Well, sometimes, sort of, maybe. I feel fortunate that I don't have much pain. I'm still taking B-6 and B-12. I'll go see the neurologist again after the 1st of the year if there no more improvement.
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minus, I am lying on the sofa and felt like a creppy feeling up my ankles so hoping for help from new doc. Found this guy as he is a pain specialist so well let you know how it works out
have not been taking Vit Bs but have been adding turmeric and ginger to my suppliments, not sure it helps
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Proud - do report on turmeric & ginger if you can make a deternination.
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Minus- I am not seeing anything from the turmeric and ginger yet but sort of figure I will finish the bottles. It is to cut back on inflammation and arthritis. I have a doc apt today and plan on asking him his thoughts
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One thing I hate is waking up every morning with the the jolt of "where are my feet". Intellectually know they're there, but it seems waking-up from sleep, I'm never quite sure.
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Bosum - does that mean you have feeling coming back? So is what we wish for is a toss? No feeling, or feeling & pain. Ugh.
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Haven't posted for a while...because it's the same 'ol thing, but I do want to remark about something kind of weird:
I was never one of those who had foot cramps or spasms, but several times over the past few months I have felt like I was this ][ close to having a foot cramp. Makes me wonder if the nerves are not serving the muscles properly now in their deadened state. I think I did read that faulty nerves could lead to "muscle-wasting" (and I know chemo did do the muscle-wasting on me, which I have never quite rebounded from) but I don't want the fresh hell of foot/shin/calf spasms. No thank you.
Has anyone one else noticed cramping/spasming for the first time after getting their CIPN?
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hmmm, my feet have cramped in the past but now lately. I just had a test that said I did not have any nerve damage in my legs and feet
I have started sort of focusing on bending my toes and stretching them in the pool, dang but do think it may be helping me or maybe it is the ginger?
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so talk about weird solutions! I read somewhere a woman puts Vicks on her feet for neuropathy. Yes, Vicks! I have been trying it for about a week. I put it on, then put socks on over it. Crazy thing, it seems to be helping me. Go figure! Is it the camphor, the Vaseline type coating, who knows? But I'm going to keep doing it, can't hurt
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then there are the folks who believe in the bar of soap, that did not work for me!
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I had a lot of foot cramps during chemo, but they lessened afterwards. Still get them now and then if I'm over-tiring the muscles.
The numbness on the top of my foot... There was a period when it was very sensitive, but that has lessened as my nerves have slowly healed after chemo. It's still slightly numb, but not that tingly, irritated, sort of puffy/swollen feeling it also had.
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recently I have been sort of exercising my feet in the pool, gently flexing the foot back and forth, do believe it is helping the tootsies
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Proud - I agree about the pool. I'm doing 1/2 speed water aerobics. My participation is mostly in the stretching exercises & not the jogging/jumping moves, but I think I have more range of motion in my feet - if not more feeling.
April - my MO have me potassium for the foot & leg cramps. I couldn't choke down enough bananas - LOL.
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the pool is the best for all body aches!
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MinusTwo -- Oh! I had low potassium! Tried to eat bananas, and they finally had to give me those huge horse-pills and put some in my IV drips... But I didn't realize that could cause the leg and foot cramps! Interesting.
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