Vent about Permanent Neuropathy
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gardengypsy - I only take 600 mg Gab at night and it's not even close to being enough. I ache down upper spine, between shoulder blades, down both arms to wrist and hands. Also down both legs all the way to my feet. Also get sharp pains that come and go quickly in arms, legs, wrists, hands and feet. The burning/numbness of bottoms of feet and fingers is the easy part. My onco prescribed Effexor for hot flashes and it gave me headaches and shortness of breath, then she put me through a myriad of tests at my expense to look for causes. I learned from these wonderful ladies that Effexor could be the cause and the headaches stopped and shortness of breath was almost completely gone once I weaned off it. Next, she prescribed Cymbalta which completely alleviated my pain mentioned above and once again I learned here from these ladies that I should not be taking it in conjunction with Tamoxifen. She also was aware for over a year that I was taking Benedryl at night to help me sleep and once again, I learned on this website that it should not be taken along with Tamoxifen. As Trump would day....."You're fired". Looking forward to meeting my new onco but my new insurance dictates that I get a referral from my new PCP whom I have not seen yet for my annual well woman visit at the end of this month at which time I intend to ask for an increase of Gabapentin...... Still have shortness of breath after bending over and previous PCP suggested chemo induced phrenic nerve damage. Ive been reading up on - get this...bendopnea... which is a symptom of heart failure patients (to beat a dead horse) Herceptin gave me heart failure from which I've been told my beart has recovered but the cardiologists at MDA still have me on 2 heart meds to "protect my heart". Looking forward to meeting my new cardiologist too!
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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
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Blownaway, You ARE facing a lot of post-treatment challenges, and it's like a maze where you sometimes have to backtrack to get on the proper path forward. Hope your next doc can help you fit all the pieces of the puzzle together to get you pain free without risking collateral damage.
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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??
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Blownaway~ Both of my oncs havesaid that, for full effectiveness, you should take Gabapentin throughout the day. So I'm at morning, mid-day and night doses.
Lexapro helped me with my hotflashes. And you can take it with T.
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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.
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Big prayers and positive thoughts to you Blownaway.
It took my partner quite a while to understand how difficult it is for me to do those kind of "executive functioning" tasks. Just trying to pay bills sent me into a puddle of tears. My recent neuropsych eval said that on top of the chemo brain, the fatigue and CIPN were "debilitating" and making the cognitive tasks so much harder.
Looking forward to seeing what the Speech Language pathologist has to say. Apparently, this one specializes in chemo brain, and understands the impact of treatment. They have techniques and "short cuts" to retrain your brain, so to speak.
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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.
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MinusTwo: You may know this, but there are yoga therapists and PTs who know a lot about balance.
Bless..
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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
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Mary~
I, too, live in a rural area. In order to access all of my survivorship health care, I have to stay at a Hope Lodge for every appointment. Since diagnosis 14 months ago, I have been living out of a suitcase. To meet these needs,I am actually contemplating moving closer to the city.
I stood for too long today. Paying for it tonight.
What kind of a farm do you have?
:-)
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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.
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Mary~~ Your place sounds like a lot to take care of. Do you plan on keeping the farm? I am so sorry about the struggles you've had.
I don't know what I'd do without the garden. But I'm starting seeds now and in just two months' time I will be digging. Right now, I am certainly in no shape to do that kind of work; perhaps the sun and the dirt will work its magic for me.We are looking for homes closer to an urban area/access to health care. Today we looked at a condo. Not my style!!
The neuropsych eval was for the cognitive problems, not the neuropathy. The only plan for the neuropathy right now is the Gabapentin. Someone told me that her neuropathy was greatly helped by acupuncture. My problem is that I cannot afford it.
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I'd be interested to know if the acupuncture helped:
1) the dead numbness of neuropathy; or2) helped the pain for those who also have that but not the numbness
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permanent nephropathy, I have it from diabetes. along with lymphedema in my left hand. I almost retired from work lat winter because of the loss of feeling in my hands, then along came breast cancer sast march. after 21 nodes and left breast removed, the lymphedema started. left hand with big fat sausage fingers, dropping things all the time. sore feet? mine swell up and feel like hot cheese graters are being rubbed on them.. by the way, I am left handed, he one that has the lymphedema.. just try to find gloves to keep your hands warm when one hand is 1xl size and the other 4xl.
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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.
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HI, Minus Two,
I do have regular acupuncture. I look at it as necessary maintenance! He does the Eastern method, inserting the needles on the meridians to keep them open. He visited China as part of his schooling to learn the art. He puts needles in my legs from the knees down to toes; and my left arm from elbow to fingers. Also the face, head, and ears. I have had them in my back, but when I have needles in back, can't have them in front. I prefer laying on my back.
Effects: My very favorite effect is the energy that it gives me, a definite boost in my energy level.
I no longer have severe pain from my neuropathy, but I did for several months after chemo. I do have the pins and needles and shooting pains now and the more active I am, the more it bothers me. My worst symptom is the weakness in my legs, I have been doing exercises and keeping up acupuncture and also massage when I can, and am hoping for more improvement. Sometimes after acupuncture, when he has really stressed needling the neuropathy points, I seem to notice an increase in the zinging feelings. He says that is good, more feeling is better. My upper legs have some of the numbness you mention, that is what goes weak on me first, and I am hoping for results from the efforts I'm putting in. Stay tuned!
To sum up, I do think acupuncture is very good, I have been going to him for over a year. I don't think just one visit would do much good. The neuropathy is a chronic problem, and I think we can only hope to manage and improve it. That's what I am going for.....I pay $45 a visit, he is in a small rural town, it's probably more expensive in a city. I drive an hour to see him and consider the time, effort and money well worth it. I am no longer taking the neuropathy drugs.
Hope this helps, and I hope you can find a good practitioner.
Mary
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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.
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my parents planted hot peppers around their garden, kept even cows out.
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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.
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Cliff,
That didn't work for me, animals just ate everything except the peppers! (and tomatoes, squash, and cukes)! Cows however, don't have to eat anything, they ruin it by just walking all over it ugh. Had that happen too.
I am sorry about your neuropathy combined with lymphedema, that sounds very difficult.
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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
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MinusTwo,
Yes, unfortunately I don't think it's going away, I am almost 3 years from when I started chemo. But there are miracles occasionally! Let us here be some of the miracles.
I have been in some bad states of mind about all this, am trying to head in a more positive direction. I know what you mean about not being sure if you want more feeling, the feelings aren't good!
Seems neuropathy is a very unpredictable thing to have, especially chemo-induced; nobody, including neurologists, seems to know exactly where it's going to go. My friend the rehab nurse told me to keep fighting it, so I'm going to try that.
Mary
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Mary,
My neuropathy is fairly serious, and I suffer a lot when I stand for very long. The recumbent bike is one of the few kinds of exercise that I can do right now. Love it.
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BosomBlues,
Some days are definitely better than others, I hope today is a good day for you! I know exactly how you feel. When the weakness first was coming on I went to a big mall with a friend, in and out of a couple of stores, and suddenly I couldn't go any more; I felt weak and exhausted. I walked out and found a bench, then waited for her until she was finished. I didn't know what was happening, short of breath and heart pounding, chest tight. I talked to doctor, and soon was having a battery of heart tests, and found out there wasn't anything wrong with my heart. I had probably had a panic attack brought on by my unexplained weakness, because it frightened me so much. The only good thing: I found out my heart was in okay shape!
The psychiatrist that did my EMG (nerve conduction study) said that the weakness occurs because the nerves are not signaling the muscles properly. I don't completely understand it either. He also told me that since the neuropathy I have is motor-sensory-peripheral it affects the whole body: if I get sick with a cold I will feel worse than I used to feel. I have noticed that my sense of smell is sharper than it used to be. I went to a concert and it was so loud I covered my ears partially. The people I was with thought it was fine. I can't tolerate heat very well anymore, I was in Florida last fall and after the first day that I spent partially in the sun, I spent the evening in bed with cold towels and a splitting headache. After that it was beach umbrellas for me.
Yes, I'll never stop hoping that our nerves will regenerate!
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Hi, gypsy,
I am going to try the recumbent bike......glad it works for you!
Mary
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I have been helping with charity bike rides for a few years, and I have seen recumbent bikes used as well as several kinds. one of the worst to haul in is the mounhtain bikes, those big tires make the riders tired sooner when on pavement. I do not ride, no lungs or heart left for that, I usually help with a sag (safety and gear) truck.
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HI, Cliff,
Good for you for helping out with the bike rides, that is awesome. I am talking about using a stationary recumbent bike, so I don't get too far from where I start! Haven't started that yet, today I went to the gym and did a stretch/light yoga class, will see how I feel tomorrow. I've had a busy week, and my legs feel very tired.
I can imagine the fat bike tires do slow a person down. I had a friend who was the most athletic, active person I knew.......she developed an incurable brain tumor and slowly lost function over her body. She was an avid cyclist and could no longer ride her bike, so a friend who knew how made her the most beautiful recumbent road-ready recumbent bike. I don't think she got to ride it much, but it was a thing of beauty, and so was the thought behind it.
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Mary-Beautiful story.0
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Bosumblues - I'm hearing you...since dx my neuropathy has worsened, total cholesterol is now 210, A1C showed me to be prediabetic. I can literally save myself some typing be copying and pasting your post. At what point do you have to start taking statins? Hang in there.
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