Vent about Permanent Neuropathy
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Gardengypsy - I have painful neuropathy that gabapentin only helped a little. My doctor prescribed Cymbalta and the pain was gone almost immediately. Now I'm considering weaning off Gabapentin just to see if I even need it now. I also know someone who takes Lyrica for neuropathy.
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I would much more advocate for the topical sprays and B-12 supplement use than the Rxs that change your brain chemistry. Every drug taken to try to escape the symptoms of CIPN has it's own consequences. The prescription drugs really should be a last resort.
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Bosum~ Damn! My onc says it was safe on the liver!
Blownaway~ Thanks! I am seeing a neurologist this week and will be asking about the Cymbalta. One thing the Gabapentin is known for is its effectiveness with hot flashes. I've had very little, even thought I am taking Tamoxifen.
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I actually take the generic Cymbala - duloxetine. Did you wean off gabapentin or just stop taking it.
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Hi all. I also have neuropathy from an autoimmune disease. Cymbalta helped me much more than the neuropathy drugs did. Good luck to all navigating this disease....
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blownaway- I weaned off the gabapentin since I started by stepping up from 300-900. I did it over about a month.
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My neuropsych eval at Brigham Women's is tomorrow. I'm hoping for some clarity.
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best of luck and hope for some help
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Garden - yes, good luck. We'll be waiting for your report.
So Bosum are you taking anything? I can't remember if you have severe neuropathy pain or mostly numbness.
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Bosum~ I had one of my worst neuropathy days ever also. Holiday stress and work? I went to bed with Ibuprofen last night.
I attributed it to the fact that I didn't wear supportive shoes in the house yesterday.
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HI ladies!
I hope you don't mind if I jump in here with some questions. I've had on going pain problems since treatment ended. Mostly in my legs, knees, and now feet. The pain over the last few months has gotten much worse and I'm really at my end here.
I'm beginning to wonder if the foot pain is CIPN. The best way to describe the pain is constant ache and I have to wear socks/slippers because the cold is too much. I can hardly walk and when I do the bottom of my feet feel bruised and horrible. Standing for dishes or cooking is miserable. I've noticed the last few days that my pinky toe is throbbing shooting pain.
Sorry for the long post, but does this sound like neuropathy? I thought it was Femara, but I stopped that for a few weeks and the foot pain is not getting better.
Please help, I'm really getting depressed. Thx
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tangandChris - I haven't heard of it appearing as far after taxotere as your are, but one never knows with this darn cancer & side effects of the disease & the cures... Can you send your MO questions via secure email? My MO sent me to a neurologist. She offered several drugs but those only help pain, not the condition. Another place to start might be a podiatrist. Both my PCP and my derm doc told me recently I might do better with particular shoes &/or orthotics recommended by a doc.
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tang, i went to a podiatrist, they did 2 things. One they set me up with custom orthotics. Nice but expensive. Second they did the nerve study test. I have had that done now by 3 dif docs with dif results but no solution.
II will tell you I recently had surgery for hydrocephelus and while I do not in any way suggest that, lo and behold my foot pain is less,
Maybe it is caused by a dif Issue?
I do take nuerontin morn and night and feel that helps
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Two basic divisions of CIPN: those with pain, and those with numbness; and o.k. a third if you have both, but for my comment, this third group would be lumped in with the pain group.
If you CIPN gives you pain, yes, the SSRIs and SNRIs do seem to offer relief to many CIPN sufferers. Numb group, you are outta luck.
Two other basic divisions: If you strictly have only CIPN, or if you have OTHER mitigating factors that might actually be causing your symptoms (or, at least, adding to them.) Obviously, seeing a doc may help IF they can actually determine that your pain is from something else that there is a cure, therapy or drug for. If you are strictly CIPN, again you are outta luck but the docs will take your money all the same. The best you can really get from them is an Rx IF pain is your problem.
Some PT can be money well spent, if it can help with balance issues, etc.; and I won't make a blanket statement about that because I have read here that some of you do benefit.
What I just wrote is what I think, but I want you all to realize that I have come to this view by what ALL OF YOU have posted on here so far. I am only summarizing.
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it is a tough and confusing problem
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Thx for responding ☺
I'm just not sure if my symptoms match up with neuropathy or what. I've been reading online on and off today and from what I've seen there are some that start having problems with it months after chemo. I did have some trouble during chemo but it seemed to get better after up until the last few months.
I just want to know what is happening to me. I feel like my body has really betrayed me. I can't be in denial about this anymore, something is wrong.
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tangandchris.....Unfortunately your symptoms do sound like neuropathy. There are several drugs you can try to treat it. Good luck and keep us posted.
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Bosum~
I, too, look for correlation and it doesn't always make sense either. Strangely enough, Ibuprofen works well for me. And I know that can't be good for you...
I have never heard of the Benfotiamine!
Do you have a naturopath in your area who specializes in cancer? Or how about an herbalist? I believe that there are some experts out there who can guide us and know what they are doing. The part about being estrogen+ is super frustrating to me concerning supps, but I am not going to complain because it is also highly treatable in other ways.I am about to make some appointments with alternative practitioners and will let you know what I learn.
For the neuropathy, my PT just gave me an exercise she calls "flossing" the nerves. It's impossible to describe here, but basically you are lying down on your side and holding your bent leg behind you. You gently move your leg back and forth.
I rescheduled the neuro eval for next week. We'll see what the experts say...
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tangandchris~~ Yes, it is totally not fair that we are getting SEs long after we begin the healing from treatment.
I truly believe that Big Pharma can do better with the side effects aspect of chemo treatment. A university pharmacist recently explained to me that it's the carrying agents, not the life-saving drugs themselves that do the damage.
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Hi everyone, popping in to ask, does anyone see improvement after taking vitamin D3? I have been taking it to raise my D3 levels, and I do believe it helps with neuropathy. I take 5000 u daily, this is a mega dose, but not a BIG mega dose, know what I mean? Sorry if this has been covered recently on the thread, I went back and bit to see, thought I would ask. Tanga, you might ask your team about adding it to your diet, my hubby takes it too, he is a nurse and on his feet for long periods, has chronic foot pain. It has helped him. Our family doctor recommended it to him before I had cancer, I did not start it till I had chemo induced neuropathy. Thanks for your replies, and Happy New Year!
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Meadow - I have taken extra Vit D for years and ramped it up to 5000 IU last March when I broke my arm on the recommendation of my orthopedic doc. After almost a year on 5000 IU, I see no difference in the neuropathy in my feet. Glad it seems to work for you.
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I heard back from MO nurse today, she left a vm saying it's not neuropathy from chemo at least.
I'm beyond frustrated and unsure of where to turn with these issues. I'm taking a mental break from it today.
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minustwo, I sure wish it did help you, even a little. Do you think there is any different, any good from taking it? They say it helps deter recurrance, yes?
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Bosum is right. You need to get tested & discuss this with your doc. Too much Vit D can cause serious problems. I get my Vit D checked with my other bloodwork every 6 months. And now i can not get my Prolia shot w/o a Vit D number.
The same for B6 and B12. My neurologist said too much can cause symptoms like neuropathy rather than helping.
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Thanks ladies, I had a level drawn about a year ago, it was in the 40's. Latest one was in the 60's, after starting the supplement. This is still in the middle some what, from what I have read, yes?
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The hospital here shows standard range as 30.0 to 150.0 ng/ml on the Vit D, 25-hydroxy test. Mine is 51 after taking 5000 iu supplement for almost a year.
Bosum - you are probably right. So much of that stuff that I researched so diligently during & after treatment, I gave up worrying about once I passed the 2 year mark. That's the original date I heard for gradual improvement. Then I heard 3 years. Well I've just past 3 years since chemo so I expect I can stop hoping for improvement.
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I have not been on this thread in a long time. I used to suffer with the nightly numbness, tingling and minor pain in both feet when I tried to go to sleep. I occasionally felt it during the day but I could ignore it because I was usually wearing supportive shoes. However, I frequently felt pain in my ankles, especially in the summer when wearing sandals on hard surfaces. I started taking the generic form of Cymbalta about 18 months ago. It reduced symptoms significantly. I then started noticing more pain in my legs. After reading a thread about the side effects of Femara, I started taking Tumeric/Curcumin. Around the same time I read something about stimulating the nerves. I bought Addidas massage sandals. Initially I could not wear them more than a few minutes every day. Now I can wear them for hours.
I have not done any research but to me this combination of drugs, herbs and stimulation has significantly reduced my neuropathy symptoms. Most nights I do not have any numbness or tingling in my feet.
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Gwenny~ You have some good suggestions there. I believe that the Gabapentin is creating a lot of cognitive problems and it doesn't work that great. Is the Cymbalta easier to tolerate?
On my way to get the Adidas sandals.
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I have numb finger/toes - no big deal. Diagnosed with CIPN which also gives me constant aching pain down the spine arms legs, plus zingers of pain. Also no sense of smell/taste (also nerve damage). MO says that since its been 2 years, it won't improve. Gabapentin helped somewhat, along with effexor. Have seen rheumatologist and neurologist and now take Cymbalta. I am now almost pain free and have weaned off effexor and am almost weaned off gabapentin. Hope this helps.
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