Richard’s Myeloma Story Part 3: Neuropathy and Tips On Living With Myeloma
March 3rd 2013
March 3rd 2013
Richard’s story so far…Continue to read…
Neuropathy – I was at a pain level of 10 at its worst in May and June. I started taking footbaths with a TENS unit sending electrical stimulation waves into the water. It was great and very helpful. I then tried having Acupuncture treatments twice a week. These did help – I just don’t know how much. I stopped these simply because I did not feel they were doing much and the cost was a bit too much at the time. Pain has steadily been reduced from a 10 to about a three now and continually decreasing ever so slightly every day. Why? What else am I doing? I am wearing support stockings and they truly help. As skeptical as I was, they do help. I wear them about every other day now to allow my normal leg functions to return.
I am taking two things that I feel again have contributed greatly to the reducing of the pain. They are Acetyl L-Carnitine and more importantly has been taking Meten X twice a day. MetenX is a high potency, pharmaceutical grade Vitamin B complex which is a bit more expensive yet it is stronger and better than over-the-counter vitamin B complexes that you can buy in the store. I feel it has greatly contributed to the lessening of neuropathy’s pain. Again, the doctors have heard of it yet they did not have any patients on it. So once again, I am the guinea pig for test purposes. In addition, you know what – it is working!
I purchased a TENS unit through my medical insurance plan. So now, when the neuropathy truly strikes hard, I turn on the TENS unit and slip the socks over my feet and the gloves over my hands for 30 minutes of electro-stimulation and the neuropathy calms down.
GOING FORWARD:
Currently, my M protein is in remission. It has been undetectable since the end of March. And, my light chains have continued to lessen each month throughout this time. As for my white cells, they are steady and strong. I am currently on a Revlimid (15 mg.) regimen of three weeks on and one week of while still taking dexamethasone which my doctor and I have been able to reduce to 10 mg a week – 2 mg. 5 nights a week rather than the 20 mg. I started on. And I say nights because I take it as I go to sleep at night. I have few sleepless nights and I wake up feeling pretty good with the pain from the neuropathy reducing ever so slightly every day. I reduced the Revlimid to 10 mg. this Christmas.
So, everything has gone well. I can only thank my God, the prayers of many friends and family and a positive attitude for my continued improvement, including exercise and eating right. There is no doubt in my mind that the continuous exercise in the pool and in the heated whirlpool helped my strengthening and healing tremendously.
More important to all of this is the love and care I received daily from my wife. She has never left my side through this whole ordeal. We have been through every step – together. She did the research, I analyzed it and executed what we both felt was the best approach to plan to win the battle. Through our efforts, we challenged the doctors. We took no pain meds at all. No hydrocodine, no hydrocodone and no morphine. Every element of life enters into this battle and it is a battle if not a war!
I am finding out that my experience in responding to MM has been quite unique. And, I feel very fortunate. Yet, I feel I have done some things that I have not heard of others doing. And, in my experience, each of my efforts have been beneficial to my body as the pain continues to subside although slowly each week.
First: I have totally avoided any and all pain medications. I feel the body will heal itself over time. Doctors say that it takes 6 to 18 months for neuropathy to heal. So, I am just 10 months down the road and have 8 more months to see how much more this may reduce. And yes, the neuropathy pain is tough to bear but no way was I going to take Neurotin. It simply masks the pain and tells the brain you are okay when you are not. I feel that shuts down the healing process and sends false signals to the brain. This may not be able to be tolerated by many. But, I am taking the position that my body is going to heal and the neuropathy is not going to dictate to me what I can and cannot do. And most of all, it is not going to tell me to take pain killers that I feel will stop the body from healing itself.
Second: EAT HEALTHY! I have cut down on junk food, although I did not eat much anyway. I love cookies, now I eat fresh baked natural ones. They are better and good for you too. No sugar. Stay away from any and all sugars. I do not drink POP and neither should any of you – diet or regular! It absolutely is the one item that drives cancer and drives neuropathy. STOP!
Fruits, vegetables, white meat, pork, and chicken – all the healthy stuff can be made so good. And you know what – it helps your pain decrease and enables you to lose weight while eating healthy! One other thing- through all of this from the start – drink plenty of water – all that you can manage and then some more. It helps in every aspect of your bodily functions and definitely helps with easing the neuropic pain.
Third: Stretching: Exercising by lying on the floor hurt too much and was very uncomfortable. It was also difficult to exercise with my legs and arms and back from the floor. So, I went online and found a massage table which I bought for $55. What a difference it made. It enabled me to do more and more exercises than I could have hoped for and all from a comfortable position. I found that full-length body stretches seemed to reduce the neuropathy in my hands and feet as well. So, I do more of those now whenever I can. And, by lying on a table, you reduce the pressure from one’s body weight that is being pressed against the nerves through the lower and upper back.
Fourth: Stimulation – exercise, electro-shock, acupuncture, whirlpools, join your local recreation center and use it. In addition, I found sweating in the sauna helps both muscles and nerve endings. The sweat glands get going and it truly sweats the toxins out of your body.
In conclusion: I have been a stubborn patient. I am fighting this thing every day. I am not going to allow it to run my life. I have a life and I am going to get back to normal and live my life on my terms. It may be a war but it is a war I am determined to win. I am a firm believer in the old Frank Sinatra song “I did it my Way!”
Yet, remember one thing: you cannot do it alone. As it takes a village to raise a child, so too, it takes a village to beat cancer. Your family, friends, prayer groups, whomever – don’t be shy about it. Let them know. Accept their prayers and good wishes. Open your arms and the return to you will be ten-fold.
Know that my prayers are with every one of us MM folks every day! We can do it together! Feel free to drop me an e-mail; I’d love to hear from you. I can be e-mailed at Eaglerock@cox.net
Make it a great day!
Richard
Neuropathy – I was at a pain level of 10 at its worst in May and June. I started taking footbaths with a TENS unit sending electrical stimulation waves into the water. It was great and very helpful. I then tried having Acupuncture treatments twice a week. These did help – I just don’t know how much. I stopped these simply because I did not feel they were doing much and the cost was a bit too much at the time. Pain has steadily been reduced from a 10 to about a three now and continually decreasing ever so slightly every day. Why? What else am I doing? I am wearing support stockings and they truly help. As skeptical as I was, they do help. I wear them about every other day now to allow my normal leg functions to return.
I am taking two things that I feel again have contributed greatly to the reducing of the pain. They are Acetyl L-Carnitine and more importantly has been taking Meten X twice a day. MetenX is a high potency, pharmaceutical grade Vitamin B complex which is a bit more expensive yet it is stronger and better than over-the-counter vitamin B complexes that you can buy in the store. I feel it has greatly contributed to the lessening of neuropathy’s pain. Again, the doctors have heard of it yet they did not have any patients on it. So once again, I am the guinea pig for test purposes. In addition, you know what – it is working!
I purchased a TENS unit through my medical insurance plan. So now, when the neuropathy truly strikes hard, I turn on the TENS unit and slip the socks over my feet and the gloves over my hands for 30 minutes of electro-stimulation and the neuropathy calms down.
GOING FORWARD:
Currently, my M protein is in remission. It has been undetectable since the end of March. And, my light chains have continued to lessen each month throughout this time. As for my white cells, they are steady and strong. I am currently on a Revlimid (15 mg.) regimen of three weeks on and one week of while still taking dexamethasone which my doctor and I have been able to reduce to 10 mg a week – 2 mg. 5 nights a week rather than the 20 mg. I started on. And I say nights because I take it as I go to sleep at night. I have few sleepless nights and I wake up feeling pretty good with the pain from the neuropathy reducing ever so slightly every day. I reduced the Revlimid to 10 mg. this Christmas.
So, everything has gone well. I can only thank my God, the prayers of many friends and family and a positive attitude for my continued improvement, including exercise and eating right. There is no doubt in my mind that the continuous exercise in the pool and in the heated whirlpool helped my strengthening and healing tremendously.
More important to all of this is the love and care I received daily from my wife. She has never left my side through this whole ordeal. We have been through every step – together. She did the research, I analyzed it and executed what we both felt was the best approach to plan to win the battle. Through our efforts, we challenged the doctors. We took no pain meds at all. No hydrocodine, no hydrocodone and no morphine. Every element of life enters into this battle and it is a battle if not a war!
I am finding out that my experience in responding to MM has been quite unique. And, I feel very fortunate. Yet, I feel I have done some things that I have not heard of others doing. And, in my experience, each of my efforts have been beneficial to my body as the pain continues to subside although slowly each week.
First: I have totally avoided any and all pain medications. I feel the body will heal itself over time. Doctors say that it takes 6 to 18 months for neuropathy to heal. So, I am just 10 months down the road and have 8 more months to see how much more this may reduce. And yes, the neuropathy pain is tough to bear but no way was I going to take Neurotin. It simply masks the pain and tells the brain you are okay when you are not. I feel that shuts down the healing process and sends false signals to the brain. This may not be able to be tolerated by many. But, I am taking the position that my body is going to heal and the neuropathy is not going to dictate to me what I can and cannot do. And most of all, it is not going to tell me to take pain killers that I feel will stop the body from healing itself.
Second: EAT HEALTHY! I have cut down on junk food, although I did not eat much anyway. I love cookies, now I eat fresh baked natural ones. They are better and good for you too. No sugar. Stay away from any and all sugars. I do not drink POP and neither should any of you – diet or regular! It absolutely is the one item that drives cancer and drives neuropathy. STOP!
Fruits, vegetables, white meat, pork, and chicken – all the healthy stuff can be made so good. And you know what – it helps your pain decrease and enables you to lose weight while eating healthy! One other thing- through all of this from the start – drink plenty of water – all that you can manage and then some more. It helps in every aspect of your bodily functions and definitely helps with easing the neuropic pain.
Third: Stretching: Exercising by lying on the floor hurt too much and was very uncomfortable. It was also difficult to exercise with my legs and arms and back from the floor. So, I went online and found a massage table which I bought for $55. What a difference it made. It enabled me to do more and more exercises than I could have hoped for and all from a comfortable position. I found that full-length body stretches seemed to reduce the neuropathy in my hands and feet as well. So, I do more of those now whenever I can. And, by lying on a table, you reduce the pressure from one’s body weight that is being pressed against the nerves through the lower and upper back.
Fourth: Stimulation – exercise, electro-shock, acupuncture, whirlpools, join your local recreation center and use it. In addition, I found sweating in the sauna helps both muscles and nerve endings. The sweat glands get going and it truly sweats the toxins out of your body.
In conclusion: I have been a stubborn patient. I am fighting this thing every day. I am not going to allow it to run my life. I have a life and I am going to get back to normal and live my life on my terms. It may be a war but it is a war I am determined to win. I am a firm believer in the old Frank Sinatra song “I did it my Way!”
Yet, remember one thing: you cannot do it alone. As it takes a village to raise a child, so too, it takes a village to beat cancer. Your family, friends, prayer groups, whomever – don’t be shy about it. Let them know. Accept their prayers and good wishes. Open your arms and the return to you will be ten-fold.
Know that my prayers are with every one of us MM folks every day! We can do it together! Feel free to drop me an e-mail; I’d love to hear from you. I can be e-mailed at Eaglerock@cox.net
Make it a great day!
Richard
http://trialx.com/curetalk/2013/01/richards-myeloma-story-part-3-neuropathy-and-tips-on-living-with-myeloma/
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