Vent about Permanent Neuropathy

cliff - I've been reading your posts on several threads and am sorry for all your complications. Glad to see you posting to increase awareness for male breast cancer.

CIPN is so weird. I thought my fingers had gotten better, but again - better is an operative work. Lately, while I can do up my zippers now, I don't have the feeling in my fingers that I thought I did. Makes it hard to 'swipe' on a phone or tablet. I'm glad I still have a flip phone.

I almost retired last winter when I realized that the feellng was going in my hands. I work on really small parts in the electronic repair shop at work, and it makes it a bit difficult. in fact, holding tools requires attention, if I am holding a tool and look away, it will go to the floor. my hands are still steady though, so I am still working, just have to adjust. I have an incentive to keep working, my new grandaughter, who I intend to last long enough to world class spoil.

Hi Bosom Blues,

I would guess the acupuncture cost would depend on location, my doc is in a small town in middle America, he also does chiropractic care. He traveled to China as part of his acupuncure schooling, but likes rural living for his young children. I imagine this treatment would cost more in a larger city.

Good luck, I really think it's worthwhile!

Mary

Mary~ I have gone from taking 500 mg to 900 mg. (300 3x a day). I think it's working. I have never taken anything else.

I rode my incumbent bike today and plan on snowshoeing tomorrow. The neuropathic pain has taken away my exercise and I have to get brave and restart my program or I think I will be in big trouble before too long.

Gardengypsy,

I'm glad your increased Gabapentin dose is working for you, and it's wonderful that you can do your exercising.

I can't find a cardio that I can successfully do because my problem isn't pain so much as the exhaustion and weakness that starts in my legs shortly after I begin. The doc who did my EMG said my nerves are not firing properly to my muscles, and they don't properly receive the signal to keep working.. Ugh!

I keep trying, I do what I can. Like you said, I think I will be in trouble if I can't do something.

Mary

Mary- I am so sorry to hear of all the complications you have. What do you to keep yourself moving?

We have a PT group here that has a gorgeous salt water pool. Is swimming a possibility for you??

Thank you gardengypsy, I will talk to my new doctor about Lexapro. When I first started taking Gabapentin, I took it around the clock but I think only 300mg per dose. Got into a fight with hubby on a road trip because I couldn't make sense of the road map. At this point, I'm ready to try it again and at higher dosage because it seems that everything that works is not allowed.

gardengypsy - You've convinced me. I'm going back to see the neurologist that I saw when I was just finishing chemo. Now 3 years out. It's worth a try. Even though I don't have pain, I certainly have no balance. That's how I fell & broke my arm.

Gardengypsy,

I live quite rurally, the nearest town of any size is half an hour; I go to a health/therapy place there. I have done lots of therapy there after my chemo ended, for suspected lymphedema (didn't have), torn rotator cuff and am a member still. I used to go and walk a mile or two there and use the machines as well. This was before cancer while my husband was having therapy there. (He has since passed away.) Now I am lucky to make it 1/2 mile before my legs give out. They lost their yoga instructor, but have started 2 programs that are called simply stretch and mind and body stretch. They are supposedly much like gentle yoga, so I am going to give that a try starting next week. I have been working for a few weeks with a trainer who understands my limitations, he is trying to build my muscle mass a bit. It is only a half hour at a time but hard for me. I was always very active but never very muscular. I think I need it, don't want my muscles to atrophy! Other than that, if I am at home I stay moving most of the time and I have a farm; I don't have to cut cedars or anything but it's a job just keeping an eye on things! Standing is hard for me, if I have to stand a lot in a day, that night I will pay for it.

I am not much of a swimmer, and now the other problem is my shoulder, the rotator cuff has not been fixed; when I first tore it partially I was told by docs I only needed therapy. So I did therapy for months, finally asked for another scan because the pain never got better. The tear was worse, so I sought out an orthopedic doc who told me I could have surgery then or wait until it tore all the way. He said he would operate the same either way. He is very good doc, but with the other issues I have I have not pursued it, but have been putting up with it. I do have an appt with him next week, he will probably do another xray, I am going to think again about surgery. But that's the other problem with swimming, that overhead movement is painful. I suppose I could just kick in the water, better than nothing. The center I go to only has a small heated pool for therapy patients (guess that could be me, not sure) There are definitely pluses to living in a city, many more services.

Sorry to go on so long, talk to you soon, Mary

gardengypsy,

My husband and I bought a farm many years ago, I rent the pasture land to a family and they run cattle on it, and make hay in the hayfields. There is an old house and outbuildings that always seem to need some kind of maintenance. I always had a large garden until 2013, my husband had so many health problems I couldn't keep up with it, then the next year came the cancer and chemo. So garden has been idle, makes me sad. I no longer have any animals there, too much work for just me. I don't live there, but not far away. I am in Missouri.

You seem to be getting lots of different therapies for your CIPN, you mentioned a neuropsych evaluation. I haven't had anything like that, I don't think. I have been to neurologist office twice in last 2 1/2 years, second time was with nurse prac. They did a battery of autoimmune tests first time, and the last time just muscle tests, watching me walk etc. Honestly, they didn't seem very concerned with anything. I think I am getting worse now, I am going to see my GP today, don't really know where else to start, or what else to do.

Standing too much is the worst, I did that last week two days in a row ugh.

I'd be interested to know if the acupuncture helped:
1) the dead numbness of neuropathy; or

2) helped the pain for those who also have that but not the numbness

I've been following your posts Cliff and am sorry for your SEs.

I hope who ever originally mentioned acupuncture for neuropathy will post again.

Hi gypsy,

I am keeping the farm for now, unless it all just gets too much. Sometimes it feels that way!

I hope you can keep your garden going. I miss mine,but one consolation is that the last couple of years I had a garden, I only could plant 4 things in it anyway. There were so many varmints (possums, coons, groundhogs, deer, rabbits) around that they ate almost everything. So for a couple of years I only planted tomatoes, cucumbers, squash and peppers, all kinds. None of the critters liked those things. My brother also has a large garden and plants everything under the sun, so now I go and mooch off his garden. He usually has way too much anyway.

I saw my GP Friday and he gave me samples of 2 different Prescription vitamins, mostly B-vitamins. He said they might help the neuropathy. I looked at the packages when I got home, one was for neuropathy; and the other was for cognitive impairment! The doc said he was also taking that one, and thought it was good. So I'm going to try them both, the not-so-good thing is if I decide to buy them later when samples are gone, they are very expensive.

I agree about condo living, haven't done it but am not used to having close neighbors, and don't think I would like it. Not right now, anyway. I'm sorry you can't afford the acupuncture, perhaps keep checking when you have time, maybe you can find a practitioner reasonably priced.

Thanks Maryna8 for the acupuncture review.

I hear him saying 'feeling is good'. Several therapists have said that to me. I understand the theory of getting the blood flowing & the nerves sparking. BUT I'm not sure I'm on board with that thought. Right now my feet are mostly dead. And I have very little pain. I don't want to wake up nerves only to have pain. The therapists don't have to personally choose between numbness or pain.

In any case, I'm 3-1/2 years past chemo and most neurologists say it takes two years to see "some" improvement. I think it's unlikely that I'll have any significant changes.

BosomBlues,

Yes, I hear you sister: I told my doctor I could put up with the pins and needles, but the weakness is really limiting my life. I can't walk as I used to, and tire easily. During and after chemo I had the pins and needles, it got really bad with pain as well for some months after chemo; but it was a year after finishing chemo before the weakness started. I thought I was on the "getting better" path because I was back to walking a mile, and feeling pretty good. Then one day when I was walking I could only go half a mile, and it has been like that ever since. For a while I wasn't exercising at all because I would get so depressed about it, but now I have been doing some gentle strength exercises, working arms, core, legs, and I think I'm getting a little better. A friend who is a rehab nurse there in the gym said to come and use one of their recumbent bikes, she wants me to see if I can do cardio work on it. Just starting a little at a time. She told me very sternly "Do not give up!" She also said attitude is very important with her patients who have neuropathy.

I want to do yoga, but in the small city where the gym is, there is no gentle, beginner yoga instructor at a convenient time of day. I am going to start next week on a free class called a mind/body stretch. It is supposed to be similar to yoga.

Mary