Vent about Permanent Neuropathy
Comments
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Grammy,
Thanks for sharing that...;)0 -
Accompanied my DH to the podiatrist today. He had a painful callous on his foot. So I took advantage of being in the room to ask what a podiatrist could do for neuropathy. His face kind of said it all. Not much, he said. He allowed that typically his profession comes into it because patients end up with sores and damaged areas without realizing it because of the numbness and pain. He said Lyrica takes forever and provides some relief but he is unaware of any magic bullet. He said he had prescribed the compound cream for a couple of his patients and they reported some relief.
I plan to ask my oncologist about prescribing the cream and if she is unfamiliar with it I'm thinking about adding a pain specialist to my appointments. Worst case I'll make my own appointment with the podiatrist to get the cream script.
Went by the local rec center and signed up for a month so I can try getting some pool time. I don't think I'll join water aerobics just yet, I think I'll move around on my own for awhile to see how my feet take it.0 -
Pool activities are best for CIPN and other neuropathies as it is easly on joints and all movement against skin. It does not need to be cold, and in fact, warm may be easier to tolerate for many of us because we can get in and move SLOWLY rather than jump in and move frantically to get warmed up.
I agree that a neurologist should be involved from the beginning and should evaluate before each and every treatment with a chemo that is known to cause CIPN, and maybe others that MIGHT cause CIPN. I also did not realize how bad it could get; after first dose of taxotere, I had tingling in hand and teeth, MO thought it was minor, gave second dose. Within a week I had so much pain in my hands I was crying, but thought I was being "the good patient", just sucking it up and getting on with it. DH called her, and she called me one evening. She delayed and reduced 3rd dose, but by then the damage was done, I was unable to finish the treatment plan. This was in a national cancer center. I would also suggest seeing a medical toxicologist as they are beginning to be aware of the toxicities of many meds. I saw a neurologist about 6 months after chemo (couldn't get an appointment earlier than that!!!) so I guess neurologists are pretty scarce and booked up, too. In retrospect, I should have stopped chemo after first dose, got a second opinion, changed chemo, etc. I also just did not realize where the boundary was between the "normal expected" SEs of chemo that would go away and the horrendous life-altering permanent damage that was occurring.
I learned my lesson: I am now no longer a "good patient" but I complain about ANYTHING that seems even a "bit off". I saw my new MO this week, told her I had a little cough and shortness of breath when walking my usual pace, she immediately had me quit taking Afinitor until we make sure it is not due to the drug. I didn't ask her, but am seeing my medical toxicologist next week to see if that is also causing an exacerbation of my CIPN as my fingers have been miserable for the past couple of months, more than usual.
Best to all of you.0 -
Good call on the Afinitor. That stuff can cause permanent lung scarring and even resulted in death for one of our members because her Drs did not acknowledge the connection and kept her on it to the end.
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Linda,
Thank you. You have no idea HOW VALUABLE your experience/information is to all of us. Everything you posted makes total good sense. Bless your socks! !!!
THIS kind of important info. is what other BC patients NEED to hear/know about. THIS is how we can all truly help one another.
**Please don't be afraid to share things that you'd do differently next time, thinking it might scare a Newbie! How else are we to learn, gain a better and more insightful awareness?
I might not need chemo & other treatments NOW, but I sure as HELL MIGHT down the road, so I want to learn
from those that went before me NOW, before I'm in such a position...
Know what I mean?
AGAIN, THANK YOU for sharing...:)
Violet0 -
Chickadee- I suspect Afinitor may be the next driug my MO wants to put me on. I have read that it makes a lot of people become diabetic. Another crippling SE. I did remember today that I used to have a tube of Voltaren cream giving to me by my athritis doc long time ago. I may give it a try on my hand. Can't do any harm anyway. Our communtiy pool closes this week
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Linda Im so sorry how you've had to deal with this insidious PN. Gentle Hugs.
Violet, good on you that you are able to do the research now. You are in a favourable position to do that BEFORE any prospective issues. Pro-activeness is a great thing. The sad thing is many people with a BC dx aren't told about things like SideFX of various meds at the time before the damage is done. Not only that, there is so much BC puts on your plate at the time of DX that for some of us, research just aint doable in the midst of being shell shocked.0 -
Well I did the pool thing......and my feet are screaming at me. I'm not really able to do laps so I waded back and forth and tried not to land on my feet on the rough pool bottom but couldn't avoid it. The surface around the pool is rough too so just walking the short distance from the entrance was painful.
I'm going to try again but have to think of protecting the bottom of my feet with some sort of beach shoe.0 -
Chickadee- yes I feel bad I did not suggest that even flip flops taped on. I cannot wear regular beach shoes. My hubby used to take me in and he would help me keep afloat without touching pool bottom. Alas I am on my own now and not if Fl anymore but it was nice relief.
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The regular beach shoes don't stay on well walking in water. I'll figure something out. It did feel nice to be in a pool again.
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Musical,
I'm sooo upset. I feel like maybe I'm not supposed to post HERE because I have permanant neuropathy from my BMX..not from chemo, but this thread on N. seems more active than the PMPS one...sigh.
And I need HELP from SOMEONE. ..:(
PLEASE TELL ME if I'm not welcome here.
I recently went to a Pain Management new to me. It was a horrible experience and I am experiencing terrible SE's from GABAPENTIN she put me on, including a racing heart, double vision, blurry vision, cognitive prob., balance problems, lethargy, depression, and I literally PASS OUT at bedtime SITTING UP READING after I take it! I feel totally out of it & not myself. I've only been on it since Thursday. Last night I went up to 2 300mg capsules. I'm getting worse..& I'm supposed to go to 3 caps by Wed.
***Problem is this idiot doctor who is by herself in private practice/no nurse either, won't
call me back. I've called 3 times now. Receptionist said
Doc didn't check her messages Fri. or today...she MIGHT later but might not & might not call me back until tomorrow MAYBE. WTF!!? I'm a NEW PATIENT starting a new med!!!!
Her office does pee/drug tests which I took no prob. there, you have to sign you will only use 1 pharmacy& no other doc can give u pain meds. So, unless I walk in and UNSIGN
with her, I'm screwed!
I am so GREEN I NEVER should've signed w her. Biggest problem is she will ONLY SEE PATIENTS EVERY 30 DAYS. I get that they must deal w tons of addicts but this is CRAZY!
I'M stopping taking the GABAPENTIN. .don't think I've been on it long enough to get any withdrawals...?
Can't believe she won't call me back!!!! HOWEVER, I just found out online that she was being pushed out of Kaiser/ Sac was high up there in her dept so she "resigned" & is suing them! Now it makes sense why she is in private practice in a tiny town...
HELP!
Violet0 -
Sure you are welcome here. You might gather from the posts that we are all searching for the holy grail.......pain relief that works without more side effects. And a medical professional who is competent.
I'm so sorry it seems you struck out with this lady. I think you did the right thing stopping the med since it affected you so quickly.
I've been on Lyrica for several weeks now and I doubt its really helping. Very frustrating.
No better place to rant then right here.0 -
I wear my crocs in the pool. I don't have problems with them staying on but getting out I have to take it slow and let the water get out. You might try just a thick pair of socks.
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Crocs, that's a good idea. I think I have a pair in the closet.
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Thanks Chickadee,
I feel like I'm in the TWIGHLIGHT ZONE...I NEVER should've signed these crazy papers w her. WHEN I GO UNSIGN, can I ask for ALL papers/info. they sent about ME...to my other providers? And to drugstores? HOW WILL I BE ASSURED that I'LL be able to now go try &find another paun doc without hassle?0 -
Violet you're welcome here. Gentle Hugs. I dont have CIPN either or at least it didn't initiate it but when all is said and done neuropathy is neuropathy (albeit in all its insidious flavours) and it STINKS. Those of us experiencing this monster definitely are paddling in the same canoe. Ask anything you like and we'll do our best to answer if we can. Bear in mind Im from NZ and so my health system is a good deal different to you in USA. Others will hopefully help there.
Normally its a very dodgy I think and indeed discouraged on these forums for us to give out med advice, but what do you do in your situation Violet? Id do the same. Theres obviously a very bad if not dangerous reaction to Gabapentin. It is a risky drug to stop but by your post youve only been taking it for a very short while so it should be much better than whats happening now.
Hopefully you'll get help else where?
You guys doing the water, how about Tiva's?0 -
Violet I don't know much about your arrangements or coverage. I've never signed up with a doctor just made appointments. I can only assume you are entitled to your medical records. Surely she doesn't have the only copies. At bare minimum they should be forwarded to any other doc you choose.
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Question for you guys..
I woke up yesterday with a tingling toe. It seems to be just my "ring" toe on my right foot. At first I thought I had stepped on some tape or something..that's kind of how it feels. I am 18 months out from my last chemo and a year out from my last herceptin. I'm on Tamoxifen. Do I need to call my doctor? I have a gyno appointment (just annual checkup) this morning so I guess I can ask him, but he already thinks I'm nuts.
It is just so random but I've never had it before.0 -
Rule of thumb if something has been a problem for a couple weeks then call. It's difficult to imagine nerve damage would be delayed by so long. Unless some other health issue or medication you have now could contribute.
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I'm glad I discovered this thread. I don't often post, but my neuropathy has gotten bad enough the past few days to make me want to scream. I started Halaven a month ago, and I don't want to go off it, because as chemos go it's pretty mild, but good grief, the neuropathy has intensified! I already had numb feet from my first round 8 years ago, but it was mild and didn't affect my balance or my hands, so I didn't mind much. But now I've got it all up to my thighs, along with restless legs (what a combo!!). I haven't gotten a call back from the onc about starting neurontin or lyrica or whatever.
I did find one thing that helped, not sure if it was mentioned or not since I didn't read the entire thread, but...this sounds a bit odd, but I don't care. I have a bunch of pain patches (Lidocaine) and I got desperate enough to put them on the soles of my feet. It made a huge difference. The only problem is that peeling them off 12 hours later feels horrid. Doesn't hurt, just feels really, really weird. But at this point I'll deal with weird if it means I can walk!
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Ok you're scareing me. My onc is leaning towards Halaven. I don't see her for another two weeks.
I think someone on here did say something about using a pain patch and I can imagine how much fun (not) it is to pull it off. It leads me to think topical might be better than meds.
It's summer so there's no way I'm wearing knee high compression socks but I do wonder if they help a little. Once I get back into jeans and long pants I'm going to try them.0 -
Violet, can you find a palliative care specialist instead of pain management specialist? I had issues with the pain management clinic I was initially referred to, refused to sign ANYTHING until I had met the doctor and we had discussed a plan that seemed agreeable to me, so got in with palliative care (NOT HOSPICE!!!) to manage symptoms. My doc uses some drugs, some topical stuff, some mind-body approaches (recommends yoga, meditation, etc) as well as traditional approaches. We worked through nearly every medication available, but none worked and I had bad SEs, so now we minimize drugs, use physical modalities, and overall I am hanging in there. But the main thing is, I have a health care provider I trust, I feel like we work TOGETHER for the BEST that can be for ME. It is not great much of the time, but I do believe it is the best that can be achieved with the options available, and especially with the options that are consistent with MY LIFE VALUES and that I am willing to use, those options that give ME more benefit than risk or harm. As far as records, any new provider can request them from your old providers, but you have to sign a release to allow them to do so. Depending on your location, your providers may be using electronic health records and it becomes much easier for them to get access to your records. Best wishes!!!! And take heart - it does take some effort, and is even harder when you just don't feel good in general, but it is definitely worth finding the right doc that you can work with to improve your quality of life. Lots of gentle hugs.
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Do you have to "sign up" with pain specialists? I'm not familiar with that at all, so curious.
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Sorry, Chick...other than the neuropathy, the chemo is definitely doable.
I had some compression stockings that I got in the hospital once, and this morning I noticed the lymphedema in my leg starting up again along with everything else, so I put one on my right leg for the day. I hated wearing it because it's so tight that it digs into my thigh, but I have to admit it did help with the tingling pain a lot. Maybe I can wear them more in the winter.
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Linda,
Thanks. I'll need to find someone else. Crazy doc.'s office said I can just call to unsign then they send me release form....
Chick: not most/all pain docs...I wouldn't unless you interview FIRST! I was green...;)
Violet0 -
Will share crazy doc update later...gotta run...
Violet0 -
Linda-n3. Wow, I want your Doc. I must add that I have bever been to a "pain specialist " although the neuro I just saw before my recurrent Dx mentioned me seeing one when I get done w/Rads if neuropathy still worse. Kinda scary to be treated like a druggy when you have neuropathy.
Violet - for sure I would hold the new med until you can speak w/some Dr. Personally I was up to max dose w/no beneficial results at all after maybe a couple of months. Lyrica made me very spacy andI did not feel safe driving. So finally my MO put me on Elavil. This does help w/the restless legs and sleep but not the neuropathy. I for sure would never sign on w/someone I did not trust.
Raro- Yes I use a compression stocking on my neuropathy arm. I was worried about lymphodema initially as I had a swollen arm I had saved the ones used on my legs several years ago. Yep- legs were skinnier back then.
Good idea w/the crocs I may have to notify pool management s its a community one.0 -
I have Lymphedema in my legs and wear class 2 compression. I haven't noticed if helps or not but I do walk better if that makes any sense. I do have balance issues.
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I didn't know there were classes for the socks. That's interesting.
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