Nerve pain

sandysp
sandysp Member Posts: 868 Member
in Anal Cancer #1
I posted this in the diet section:-)

I tried to reduce the Lyrica dosage I am on, with the help of Rehabilitation Therapy at MSK under a doctors guidance. I got down to 100 miligrams from 150 and it was just like "old times" pre cancer treatments. The pain was unbearable. I got so depressed trying to get up and not being able to move my right leg. (I have groin pain worse on the right side too). I am back on 150 miligrams. Maybe it is partially because I have been sick with Pertussis, and perhaps I will try to reduce the dosage again one day, but for now, I am so grateful Lyrica is on the market. It is keeping me ambulatory, without a doubt. I am still suffering but it is doable. I am not on an antidepressant since no one seems to think I am depressed who evaluates me and they don't want to mix one in.

I am glad to just be able to get out of the chair and walk. I continue to do Chi Exercises for mind, body and spirit health which keep me squatting, doing lunges and reaches slowly. With the deep breathing in consort, I am surprisingly (to the doctors, etc who examine me) flexible.

Fondly,
Sandy

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Hi Sandy--
    I hope your exercise program will continue to keep you flexible and feeling as good as possible. I really do thing exercise is critical in keeping long-term side effects from radiation at bay.
  • Angela_K
    Angela_K Member Posts: 374 Member
    #3
    Chi
    The Tai Chi Master that I speak of is a retired firefighter and for reasons that I don't fully remember (an accident maybe) he had severe pain and some paralysis in his left leg and was on a large helping of pharmaceuticals to help him cope. He first sought out Tai Chi as a method in which to alleviate that pain . . .and the rest is history. Completely pain and medication free.

    I'm sorry that you are hurting but I do think you are on the right path with exploring Tai Chi. Qi Gong would most likely be beneficial and you just might be surprised with the affordability of, say, a month's worth of Qi Gong healing classes in the hands of a reputable Master?

    Much love,
    Angela
  • sandysp
    sandysp Member Posts: 868 Member
    #4
    Angela_K said:

    Chi
    The Tai Chi Master that I speak of is a retired firefighter and for reasons that I don't fully remember (an accident maybe) he had severe pain and some paralysis in his left leg and was on a large helping of pharmaceuticals to help him cope. He first sought out Tai Chi as a method in which to alleviate that pain . . .and the rest is history. Completely pain and medication free.

    I'm sorry that you are hurting but I do think you are on the right path with exploring Tai Chi. Qi Gong would most likely be beneficial and you just might be surprised with the affordability of, say, a month's worth of Qi Gong healing classes in the hands of a reputable Master?

    Much love,
    Angela

    I will look into it
    I think you are right about that.

    I am always cutting corners but I feel like if I don't do something the cost will definitely be greater.

    Thanks,
    Sandy
  • sandysp
    sandysp Member Posts: 868 Member
    #5
    mp327 said:

    Hi Sandy--
    I hope your exercise program will continue to keep you flexible and feeling as good as possible. I really do thing exercise is critical in keeping long-term side effects from radiation at bay.

    Piriformis syndrome
    Hi,
    You probably know about this. I went to a Chiropractor who does acupuncture treatments I used to see before I was diagnosed for this awful pain down my legs and up my neck etc. Crazy making pain! He says he believes it is Piriformis syndrome. I have been researching exercises, massage (self) treatments and there is a lot on the internet about it. It seems the MRI should be an MRN instead even though the insurance company may balk, it shows more nerve activity.
    It seems that about 15% of the populations has the nerves run through the muscle instead of under it. I believe I am in that percentage.

    What having cancer has done for me is to not be afraid to advocate for myself and also to help me do what I am told in order to get better. There are lots of things I can do to help myself and that is encouraging.

    Thank you for listening to me whine and complain. Who knows, maybe if I can get a grip on this pain I'll grow up to be like you, Martha and be running again like a kid:-) The Chiropractor really helped me see beyond the "this is because of radiation" by reminding me I was like this before and he still doesn't believe it had anything to do with cancer.

    Love,
    Sandy
  • sandysp
    sandysp Member Posts: 868 Member
    #6
    Angela_K said:

    Chi
    The Tai Chi Master that I speak of is a retired firefighter and for reasons that I don't fully remember (an accident maybe) he had severe pain and some paralysis in his left leg and was on a large helping of pharmaceuticals to help him cope. He first sought out Tai Chi as a method in which to alleviate that pain . . .and the rest is history. Completely pain and medication free.

    I'm sorry that you are hurting but I do think you are on the right path with exploring Tai Chi. Qi Gong would most likely be beneficial and you just might be surprised with the affordability of, say, a month's worth of Qi Gong healing classes in the hands of a reputable Master?

    Much love,
    Angela

    Qi Gong
    Qi Gong is what I do mostly as it is what is mostly instructed. The Tai Chi workouts are very short and not satisfying for someone who has always exercised a lot.

    I haven't looked beyond my DVD collection but will think about it some more. I have met so many new doctors, therapists, etc I really like doing my exercises in private and will likely give this preference up very slowly. I much prefer giving exercise classes to taking them. I found that this pain if it truly is piriformis syndrome is aggravated many times by biking. I used to teach 6-8 spinning classes a week, that and "Mindful Movement" which incorporates Pilates. The first time my right leg really hurt and refused to move was during a spinning class I was taking from another teacher (I was really hooked in those days - my early 50's). There is much to learn as the body is aging and revolts against it's "master":-)

    Good luck with your lucky find. I believe you will benefit from your relationship with this Chi exercise master in many ways.

    All the best,
    Sandy
  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    sandysp said:

    Piriformis syndrome
    Hi,
    You probably know about this. I went to a Chiropractor who does acupuncture treatments I used to see before I was diagnosed for this awful pain down my legs and up my neck etc. Crazy making pain! He says he believes it is Piriformis syndrome. I have been researching exercises, massage (self) treatments and there is a lot on the internet about it. It seems the MRI should be an MRN instead even though the insurance company may balk, it shows more nerve activity.
    It seems that about 15% of the populations has the nerves run through the muscle instead of under it. I believe I am in that percentage.

    What having cancer has done for me is to not be afraid to advocate for myself and also to help me do what I am told in order to get better. There are lots of things I can do to help myself and that is encouraging.

    Thank you for listening to me whine and complain. Who knows, maybe if I can get a grip on this pain I'll grow up to be like you, Martha and be running again like a kid:-) The Chiropractor really helped me see beyond the "this is because of radiation" by reminding me I was like this before and he still doesn't believe it had anything to do with cancer.

    Love,
    Sandy

    Hi Sandy!
    My dear, sweet friend, you may not want to wish to grow up to be like me! I have aches and pains too! I'm just not smart enough to pay attention to them! I sincerely hope you can find answers to your nerve pain and some type of relief. I can't imagine living every day like that and my heart goes out to you. Hang in there!
  • RoseC
    RoseC Member Posts: 559
    #8
    sandysp said:

    Qi Gong
    Qi Gong is what I do mostly as it is what is mostly instructed. The Tai Chi workouts are very short and not satisfying for someone who has always exercised a lot.

    I haven't looked beyond my DVD collection but will think about it some more. I have met so many new doctors, therapists, etc I really like doing my exercises in private and will likely give this preference up very slowly. I much prefer giving exercise classes to taking them. I found that this pain if it truly is piriformis syndrome is aggravated many times by biking. I used to teach 6-8 spinning classes a week, that and "Mindful Movement" which incorporates Pilates. The first time my right leg really hurt and refused to move was during a spinning class I was taking from another teacher (I was really hooked in those days - my early 50's). There is much to learn as the body is aging and revolts against it's "master":-)

    Good luck with your lucky find. I believe you will benefit from your relationship with this Chi exercise master in many ways.

    All the best,
    Sandy

    Hi Sandy - I researched
    Hi Sandy - I researched piriformis syndrome too. It seemed to fit all the things that were ailing me. After about 250 feet of walking, my back end gets all cramped up and I have to sit down for a while (never had anything like this till after chemo/radiation and a two-month stay in the hospital due to chemo complications).

    I found a good video on YouTube on how to cure it - unfortunately I couldn't do the exercises that were recommended because they gave me back pain. Maybe my PC doctor is correct - he always said it was my back and not my pelvic area that was causing my pain. I see him in another couple of weeks - maybe I'll talk to him again about it. This getting older is getting old. :):)
  • sandysp
    sandysp Member Posts: 868 Member
    #9
    RoseC said:

    Hi Sandy - I researched
    Hi Sandy - I researched piriformis syndrome too. It seemed to fit all the things that were ailing me. After about 250 feet of walking, my back end gets all cramped up and I have to sit down for a while (never had anything like this till after chemo/radiation and a two-month stay in the hospital due to chemo complications).

    I found a good video on YouTube on how to cure it - unfortunately I couldn't do the exercises that were recommended because they gave me back pain. Maybe my PC doctor is correct - he always said it was my back and not my pelvic area that was causing my pain. I see him in another couple of weeks - maybe I'll talk to him again about it. This getting older is getting old. :):)

    You are so right!
    Everything is so complicated. I would like to blame problems that existed on cancer and radiation but they preexisted. Somehow I hoped getting rid of the cancer would get rid of this awful crippling condition. I go back to MSK Rehab and I hope they come up with more answers. I sat for about an hour and a half and went to get up and couldn't move either of my legs. Because I was already in motion, I almost fell flat on my face. I looked like I was drunk probably since I had to stagger. I feel handicapped. This will not work for the types of position I held before. Too much sitting and too many stairs.The syndrome fits some of my syndromes but not all. The acupuncturist says there may be a problem with my left hip and the Physiologist says the symptoms are concurrent with the scar tissue. So we'll see how it comes out but I will have to figure out how to get up and down to move if we can't fix this.

    Thanks for your input. I had problems with my back when I did them also. I think that's a sign of something else. If you find out let me know and I will do the same.

    All the best,
    Sandy
  • LaCh
    LaCh Member Posts: 557
    #10
    sandysp said:

    You are so right!
    Everything is so complicated. I would like to blame problems that existed on cancer and radiation but they preexisted. Somehow I hoped getting rid of the cancer would get rid of this awful crippling condition. I go back to MSK Rehab and I hope they come up with more answers. I sat for about an hour and a half and went to get up and couldn't move either of my legs. Because I was already in motion, I almost fell flat on my face. I looked like I was drunk probably since I had to stagger. I feel handicapped. This will not work for the types of position I held before. Too much sitting and too many stairs.The syndrome fits some of my syndromes but not all. The acupuncturist says there may be a problem with my left hip and the Physiologist says the symptoms are concurrent with the scar tissue. So we'll see how it comes out but I will have to figure out how to get up and down to move if we can't fix this.

    Thanks for your input. I had problems with my back when I did them also. I think that's a sign of something else. If you find out let me know and I will do the same.

    All the best,
    Sandy

    sandysp
    Hi Sandysp,
    I take it you live in New York City? I live about a 10-minute walk from MSKCC but they don't take my insurance, so I couldn't use them. I am, however, going to use their adjunct Integrative Center on First Ave and 74th Street. Most of the services are priced beyond my reach, but there's a free cancer nutrition class this Tuesday which I'll attend and they have group accupuncture (6 people max) which is more affordable than their private sessions, which I'll also use (for as long as I can, side-effects from treatment permitting).

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