Hi Fred,
My name is Kim and I have had 6 rounds of chemotherapy, 2 high dose of chemo, was on thalidomide, 2 bone marrow transplants and I'm currently on Revalmid as my maintenance drug, I have permanent neuropathy in my feet, legs and fingers.
My current regimen of treatment: 2200mg of Neurotin, 45mg of morphine every 12 hours, when the pain gets bad, which is usually at night, I take Loratab. I had an appointment with my transplant doctor 2 weeks ago and she started me on B6 and alpha-Lipoic Acid to see if this would also help with the pain. We have discussed Cymbalta and Effecor, so we are still actively trying to find a better pain solution for the neuropathy.
I have also been told that my neuropathy is permanent and I currently have to use a cane to walk. I think pain control is going to be different for each individual, due to treatments and how well you tolerate medications. My husband and I went to the beach in Oct. of this year and I was surprised to see that the hot tub actually helped the swelling and pain in my feet. For me massage helps for a little bit. We bought a wedge at the medical supply store and propping my feet on that through out the day helps. I hope I have given you some options to discuss with you doctor to see if any of this treatments are right for you and will help with your pain.
Forums
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2ndChance - Name: Kimberly
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 4, 2009
- Age at diagnosis: 44
Re: Peripheral neuropathy
Thanks for the advice. I may see if my doctor can switch me from Lexapro to Cymbalta.
We have a hot tub, which I've been hesitant to use since rod-placement surgery due to myeloma-related femur fracture (I have a fear of falling). I'll give it a try and see if it helps.
By the way, I am on Vitamin D, and it seems to help somewhat with muscle cramping, even though I don't think that is a published treatment for neuropathy.
Perhaps my neuropathy is more severe since I was treated with thalidomide, not Velcade, during my myeloma treatment in 2005-2006.
We have a hot tub, which I've been hesitant to use since rod-placement surgery due to myeloma-related femur fracture (I have a fear of falling). I'll give it a try and see if it helps.
By the way, I am on Vitamin D, and it seems to help somewhat with muscle cramping, even though I don't think that is a published treatment for neuropathy.
Perhaps my neuropathy is more severe since I was treated with thalidomide, not Velcade, during my myeloma treatment in 2005-2006.
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: Peripheral neuropathy
I have used CalMac for cramps and spasms for thirty years. I used to buy it in separate bags of powder and mix it up myself with apple cider vinegar. For about 15 years now, you have been able to get it all pre-mixed from this company. It is excellent. Do remember though, more is not better when mixing this concoction. If there are changes in bowel movements, adjust the amount in your servings. You can drink it multiple times a day and night, its only the amount of the mixture you put in each serving you want to pay close attention too.
I hope its helpful.
Sometimes, rarely, you can find it in a high end health food or apothecary shop.
Lori
I hope its helpful.
Sometimes, rarely, you can find it in a high end health food or apothecary shop.
Lori
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: Peripheral neuropathy
Feb 2011 -
Diagnosed multiple myeloma Stage 4
7 rounds of chemo (Revlimid, Dexameth, Velcade)
Aug 2011 -
Stem Cell Xplant - Brother was genetic 10/10 match
8 months post Xplant
PN is just as bad today (eight months post Xplant) as it was the day I stopped chemo
I take Lyrica
I take Metanx (am not diabetic)
It seems like an incessant balancing act among diet, exercise, sleep, comfy shoes and medication to ameliorate my PN. Am hoping the PN lessens over time. Nothing else to do except drive on, trust my care team and keep the faith!
Nice website!
Diagnosed multiple myeloma Stage 4
7 rounds of chemo (Revlimid, Dexameth, Velcade)
Aug 2011 -
Stem Cell Xplant - Brother was genetic 10/10 match
8 months post Xplant
PN is just as bad today (eight months post Xplant) as it was the day I stopped chemo
I take Lyrica
I take Metanx (am not diabetic)
It seems like an incessant balancing act among diet, exercise, sleep, comfy shoes and medication to ameliorate my PN. Am hoping the PN lessens over time. Nothing else to do except drive on, trust my care team and keep the faith!
Nice website!
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Patd95
Re: Peripheral neuropathy
My doc suggested Cymbalta, put I did not want to add any more drugs. She also suggested swimming as it works the small muscle fibers. You can either do water aerobics or swim laps. Additionally foot massage and reflexology was suggested. I go have a local reflexologist that I see a few times a week. My Velcade dose has been reduced to 1.0 from 1.3 and the symptoms seem to be dissapating. The good news is that the PN will go away after I complete treament next month. 
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WallysMom
Re: Peripheral neuropathy
I switched from Lexapro to Cymbalta in an attempt to help my PN, and it has helped tremendously. I used to have horrible cramping, which has almost completely gone away. The bottoms of my feet are still numb, but the numbness doesn't travel up my legs like it used to.
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: Peripheral neuropathy
I developed grade 3 PN and was prescribed Morphine for the pain. It helped some but I found when I went lap swimming the pain from PN would nearly completely go away, which was pretty amazing. Unfortunately with the Velcade fatigue my swim time was limited but when I could I thoroughly enjoyed being pain free for a short while. When the PN pain got bad at night I would often get up and pace around the house in the dead of the night or ride my exercise bike. Both helped quite a bit.
I made the mistake of minimizing how bad the PN was when talking about it with my doctors. My mindset at the time was I was afraid bad PN and being pulled off Velcade might prevent me from getting a SCT and thus shorten my life expectancy. But besides nerve damage that caused pain, I sustained nerve damage to the muscles that surround the blood vessels in the legs that contract to maintain blood pressure when standing up. I started blacking out when I stood up from low blood pressure, and that could really prevent a SCT. At this point I was pulled off Velcade. Thankfully those nerves have healed and I no longer have blood pressure issues. There was no assurance those nerves were going to heal and if they had not you can imagine how much quality of life would have been affected if I would have had to spend the rest of my life mostly sitting and lying down. I still have no deep tendon reflexes in my legs. Deep tendon reflexes are the keen and ankle involuntary jerk reflexes when they are tapped. My neurologist said those reflexes may never come back, but it does not seem to be affecting me much at all. And nine months after stopping Velcade the pain has subsided considerably and it has been months since I took a pain killer for it. It took some time for the pain to subside, it did not happen quickly. I still have some mild pain I can live with.
I made the mistake of minimizing how bad the PN was when talking about it with my doctors. My mindset at the time was I was afraid bad PN and being pulled off Velcade might prevent me from getting a SCT and thus shorten my life expectancy. But besides nerve damage that caused pain, I sustained nerve damage to the muscles that surround the blood vessels in the legs that contract to maintain blood pressure when standing up. I started blacking out when I stood up from low blood pressure, and that could really prevent a SCT. At this point I was pulled off Velcade. Thankfully those nerves have healed and I no longer have blood pressure issues. There was no assurance those nerves were going to heal and if they had not you can imagine how much quality of life would have been affected if I would have had to spend the rest of my life mostly sitting and lying down. I still have no deep tendon reflexes in my legs. Deep tendon reflexes are the keen and ankle involuntary jerk reflexes when they are tapped. My neurologist said those reflexes may never come back, but it does not seem to be affecting me much at all. And nine months after stopping Velcade the pain has subsided considerably and it has been months since I took a pain killer for it. It took some time for the pain to subside, it did not happen quickly. I still have some mild pain I can live with.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Peripheral neuropathy
Dominic doesn't leave the house without a bottle of Apple Cider Vinegar. When his hands cramp up, he takes a few gulps. Insto-Presto! Cramps disappear. Sounds crazy, but it works for him. (sometimes he mixes it with Mountain Dew, which sounds horrid to me! I like vinegar!) 
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Nanette - Name: Nanette "Deaux"
- Who do you know with myeloma?: My dear husband, Dominic
- When were you/they diagnosed?: Spring of 2008
- Age at diagnosis: 62
Re: Peripheral neuropathy
I have developed Neuropathy in my feet. It produces numbness & sometimes pins and needles.
Can someone tell me if they have taken any drugs to improve this condition?
Can someone tell me if they have taken any drugs to improve this condition?
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gtb-55
Re: Peripheral neuropathy
I had neuropathy in my feet for a few months, then it started getting so bad that I couldn't sleep. I was advised to try Cymbalta. After one day I noticed improvement. After the 4th day, it was almost gone. That was almost two years ago and I still take it. My feet are still numb but I don't mind it too much.
It is primarily an antidepressant, but is also being marketed for osteoarthritis as well as neuropathy.
It is primarily an antidepressant, but is also being marketed for osteoarthritis as well as neuropathy.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
29 posts
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