Vent about Permanent Neuropathy
Comments
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Kittie - Throw vanity out the door and use a CANE. I refused,and first and had a balance issue but the thought of a fractured hip was worse so I have been using one for several years (mostly as added security ) Don' t go anywhere without it. My grandkids love to bring it for me too.
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Our state fair is coming up and I do plan on taking a walker with a seat in it. The pride does go out the window when I know I will be there a long time with only a few place to sit here and there. Keeping my fingers crossed I can talk my nephew into going and walking the girls around to the rides and me parking it at a table. I want to take my child to the zoo...and I have really thought about renting an electric cart or whatever they call them. Sad to feel this way when yet I am still happy to be here for my daughter and her friend who is sounding like will be with us a good while. It's been 5 weeks now. We meet with DSS Monday to learn more.0 -
Just to chime in on the muscle weakness. I had it bad too and never have regained full function (just like the neuropathy). When I originally looked this up I read that about 5% of us on Taxanes get the myopathy. They aren't sure if it is muscle damage or nerve to muscle damage. I don't know how much stock you should take in this, I can just pass on what did and didn't work for me. I was quite athletic before my diagnosis and really was used to the no pain no gain idea. I worked out all through chemo, although at a drastically reduced level. As soon as I could I tried pushing hard and working out and going to exhaustion. I found out the hard way that was the worst thing I could do. I've had to learn to push just short of exhaustion and take more days off from working out. If I get sore I dont' work out again until a day break after the soreness recedes. Only that way have I been able to get some strength back and make some progress in working out again. Yoga was the best because it helped with balance and I could moderate time in poses. (as opposed to going out walking/running and getting too far from home). I dont' know if everyone is the same way, I can just pass on the only thing that worked for me. I try hard to just look at improvement from year to year and not compare what little I can do now compared to what I used to be able to do. Otherwise I'd lose it.0 -
DebDylan, you got it right in the SOME. I think there is a lot that we don't know about what chemo does to our muscles and how to help with it afterwards0 -
Hi Kmmd. Similarly, I struggled with injury when working out. I pushed myself for a year and ended up with upper arm/shoulder injuries. The exercise I did at the gym was a mistake and I did it against my doctor and physical therapist's advice. I've since learned my lesson and now do Pilates to keep some strength in my muscles and lots of stretching has helped my arm and shoulder pain. I also get a weekly massage but that is on my arms and hands mainly and this is to help keep me playing my musical instruments. I believe that because of the nerve damage my muscles feel weak and indeed weaken more easily.
DebDylan, yeah, good nutrition and meds has worked for me. I still have shooting pains and must see a massage therapist and do stretches everyday or I would just be chair bound and in worse pain.0 -
I'm beginning to think that the neuropathy in my feet is the canary in the coal mine. it is the most noticeable of symptoms, but I've had what you describe as myopathy (kmmd). My left ankle would give out on me, on occasion, during chemo - it's mostly better now. My balance sucks! I can't tell if it's from my feet not feeling things as soon as possible - I stumble very easily on my daily hikes or my equilibrium. Slight incontinence for months after chemo. Persistent inability to sleep for more than 6 hours - perceived as extreme pressure in my kidney area. This almost equals the feet in effect as sleep is so important! I thought it was my bed, which argueably needed replacement, but I had atleast 3 beds delivered to my house (all returnable) and 2 rejects before arrival before I settled in on what I thought would work - a Sleep Number $4000 version. As heavenly as it might have felt in the showroom, it feels like a board most of the time and I'm convinced it's some version of neuropathy in my core area.0 -
kmmd- Yes way back when my severe weakness started I had full neuro work ups and no muscle disease found. They decided to call it Polyneurpathy vs Polymyocites. (sp) This partially explanes what I have but the actual cause is still undetermined. Most have told me likely related to Taxol but never got better answers. None could tell me how to cure it , so we are left researching ourselves. I am checking on this ANODYNE THERAPY. A type of UV light/heat treatment. Not widely out there but am getting an info packet sent to me. Now my right thumb and index is so sensitive yet numb at the same time. I have been unable to spread my toes for 5 years now but pain is tolerable.
Kam170- I also had bladder issues that are not so bad for over a year. During chemo w,/ Adriamycin (red devil ) it would hit me out of the blue. At 58 I just thought it was my older age. Was too embarrased to tell my MO. I have since read this can be a side effect of that drug. Also when I have lost weight it gets better .
Lifelover- I am a fellow ex -pat- YorkshireUK. . Yes, meds and diet works best. Plenty of Vit B complex as it works on the body nerves. I doubt I could handle direct massage right now but I know this helps a lot of people. My weight is down about 10-12 lbs and closer to where I should be. I did do some TI- CHI way back w/ home DVD. Shoukd try it again soon.0 -
Hello, all,
I'm posting a link to a slide presentation from Dana-Farber in Boston. This is one of the most comprehensive treatments I've seen on the topic of chemo-related peripheral neuropathy. She covers anodyne therapy.
I hope this helps. This is a tough problem, and we all struggle with how to best deal with it. Wishing everyone good health and a good day!
http://www.slideshare.net/DanaFarber/chemorelated-neuropathy-managing-this-nerve-wracking-problem0 -
Wow September. What an amazing slide show. I'm in Houston, which is a major medical mecca, and most of the docs I know, even at the med schools & the teaching hospitals, just poo-poo the issue - like they do with lymphadema. It's always - don't worry, the symptoms will go away. Or with LE - they're not likely to happen to you. I was aware & tried for prevention, but lost that ball game. Now I'm playing a hoping game that some of it will decrease. I'm seeing a podiatrist next week & we'll see what he has to say. Also seeing a doc who specializes in hand surgery for my trigger thumb. Wonder what I'll hear there? Thanks for posting.0 -
DebDylan, CIPN can be permanent, or it may improve over time, sometimes years. It can get worse after treatment because the damage is done to the nerve during treatment, but the nerve continues to work for a while, then dies back and symptoms occur several weeks to months later. This is called "coasting." Wish I had better news. I had coasting, felt better for the first few weeks off chemo, then it hit hard and has lasted 3 years.0 -
has anyone tried one of these Neuropathy Centers of Excellence? There isn't one near me but wonder if they really have a clue.0 -
well sweetie, I guess I am one of those long timers, I am 19 yr Survivor(Praise GOD), I have some aches and pains now but it,s because I am 62 yrs old Thank God, but with each year after chemo it did get less and less painful, I now have senior aches. HA HA!!!!!!!!!!!!!!!!!!!!!!!!! hang in there sweetie. msphil(idc,stage2,0/3 nodes, L mast, chemo and rads and 5yrs on tamoxifen)0
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Chickadee, there is supposedly a Center of Excellence for Neuropathy here, but I have not been referred to it and didn't even know it existed until you posted. I will ask my MO if she knows anything about it.0 -
Linda, love to know what you find out. If they really could provide relief I'd travel to one. My onc has not heard of them either and there aren't any in Tx.0 -
today was infusion day and I'm wobbling around like a drunken sailor. Had a long talk with onc about these symptoms and we both feel its neuropathy connected. My legs seem to have no strength on infusion day. Have an appt to see physical therapy. All this lying around can't be good for muscle tone. I'd love to exercise but so much depends on being on or using your feet. This sucks.
She wants an MRI of my brain on. Friday for a baseline. Now I'm really in a panic. Very claustrophobic. I've only tried it once and I had an anxiety attack just as they rolled me in. I was shaking for days. Onc suggested I tak two of my Ativan, I'd rather be sedated. I'm going to try my best.0 -
ChickDee- If you take a relaxant like Lorazepam before the MR I .Take it about an hour before. ALSO if you havea music player like an MP3, my own classical music helped me thru. Also cover your eyes w/ a washcloth or a face mask so the big machines will not upset you if they move around. This helped me a lot.0 -
Chickadee,
I had an awful time with my first MRI. When I had to have another one to resolve something that couldn't be seen with ultrasound, I asked for help. My MO sent me to a different facility where they had an open MRI. This may not be an option for you, but I'd certainly ask, and I'd let them know it was a real problem the first time (a calm patient makes everything go more smoothly). I also took a boat load of Ativan beforehand, and between the it made a world of difference.
Whatever you do, good luck on Friday! Sending healthy thoughts.0 -
I survived thr MRI but the results have me in a tailspin. All this stumbling about is due to a large mass on my cerebellum along with numerous other mets. My feet are the least of my worries now.0 -
Chickadee,
I'm so sorry to hear this news. Please let us know how you're doing. Sending calming thoughts.0 -
Oh, (((((Chickadee)))))
Hoping you will find a moment of beauty and a moment of love and a moment of peace today, and maybe more than one of each. Sending much lovingkindness you way.0 -
Hi ladies...so glad I found this thread..its the middle of the night and I am just freaking out about my neuropathy in my hands and feet...I'm so tired of no relief and barely sleeping because of the pain...ugh....no docs really seem to listen to me.
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Welcome, ChickaD, so sorry you are dealing with this misery. Taxotere can really do a number on the nerves, along with the radiation.
Chickadee, hope you are finding more peace and less fear each day. Sending you lots of gentle cyberhugs!0 -
Miss Linda...thanks for the welcome..
If anyone has any tips on dealing with this craziness....I would appreciate hearing any and all!
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Welcome Chicky, you can try the usual. It's hit or miss. I think the only thing that really helps me is a nightly Oxycodone. I found Lyrica seemed to diminish the lightening strikes and intense pain but not the constant burn and numbness. Gawd I wish my feet would just go back to being there, without pain.0 -
Chick A Dee I have found that if my house is 68 during the summer, I sleep well. I can deal with 70 but any warmer, my hands and feet sting and burn. I have thought serious of buying a cooling gel pad and putting it under my mattress pad so my feet are always cool. I didn't sleep well last night either. I am currently sick so my running temp off and on has not helped my feet. Too cold will also make them hurt more. Good luck finding a happy place. It took me two years to figure mine out.0 -
Thanks...none of the "normal" works for me...I just seem to be reaching my breaking point mostly at night...ugh...lol thanks for letting me vent!
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I also am thankful to find this board. I know exactly what you mean about a Breaking Point. I was strong throughout my diagnosis, surgery, and chemotherapy. I can and will handle the radiation therapy. But what I can't handle and has finally pushed me to the breaking point is the constant pain in my feet and hands. I only cried a couple of time until about a month ago when I realized that the neuropathy wasn't going away like my MO said it should. Of course, I realized long ago that my neuropathy was more severe than she had originally told me it USUALLY gets. So when she told me that it USUALLY goes away for most people within a couple of months I was a little skeptical. It is still severe for me - now she says to give it 6 months or so. I have started on gabapentin and we are gradually increasing the dose - so far no relief. I am still hoping that the gabapentin will start helping when we get the dose higher ... but for now I find myself overwhelmed with having to deal with this constant pain while still trying to cope with treatment. I seem to cry way too easily now - and that's from someone who could easily go a year or longer without crying normally. I have learned a lot about myself that I don't want to know - although I can be brave and get through a lot, daily and constant pain is extremely hard to endure. There are times when it feels like my hands and feet are in a fire. Today is one of those days. Sometimes even my mouth/tongue hurt too! I'm sure many of you know what I mean. Thanks for listening to my venting!0 -
the oncs need to know much more about how the nerve endings are stripped and permanently damaged and stop minimizing this effect. It's really inexcusable for them to trivialize this daily agony.0 -
Miss Kirk....you just explained my feelings to a T
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Yes, they do need to stop minimizing it. "usually...that never happens...it will go away...I've never heard of anyone else with that problem...well most people don't...." If they hear themselves starting sentences with those phrases they need to clap a filter on their mouth until they can rethink what they're going to say. The pain is bad and being brushed off or having it minimized, or acting like it is our fault makes it worse. I know they didn't intend to give us neuropathy, they're doing their best to give us the best chances, but, a little acknowledgement on their part would go a long way.0
