I'm just not the same...Had mri...need a new hip!

z810840b
z810840b Member Posts: 207 Member
edited May 2012 in Anal Cancer #1
Hi all - I am 3 1/2 years out.I am basically feeling "ok" except for pelvic stiffness and pain which i mentioned before.My other main complaint is not having strength.i just dont have the physical stamina i used to have.I am learning golf and after three holes..had to pack it in.There are times when im standing with people and have to find a seat because i can't stand too long..I know i have to work on my inner core...more exercise too...I have no strength in my legs either.If i bend down to pick something up,i must hold on to something and "pull " myself up.Any body there going through this???? thanks ..alyse
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Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    Hi alyse--
    I can certainly relate to the pelvic stiffness. As for strength, it took me awhile to get back to the level I was at before cancer snuck up on me. I weight train 3 days per week and it really helps. You might try an exercise program using exercise tubing, which provide different amounts of resistence. It's easy, it's inexpensive and it works. One or two sessions with a trainer would probably provide you with an exercise program tailored to your needs and fitness level. Don't get discouraged. It takes work, but you can do it!
  • z810840b
    z810840b Member Posts: 207 Member
    mp327 said:

    Hi alyse--
    I can certainly relate to the pelvic stiffness. As for strength, it took me awhile to get back to the level I was at before cancer snuck up on me. I weight train 3 days per week and it really helps. You might try an exercise program using exercise tubing, which provide different amounts of resistence. It's easy, it's inexpensive and it works. One or two sessions with a trainer would probably provide you with an exercise program tailored to your needs and fitness level. Don't get discouraged. It takes work, but you can do it!

    hi mp
    Thanks for your advice...i know exercise can't be avoided...:-)
  • lil lady
    lil lady Member Posts: 36
    just not the same
    Hi..It will be 3 yrs.post treatment for me, and I am having the same problems I have difficulty walking a block. Most of my pain is in my right hip and weakness in my legs.It is very frustating
  • mxperry220
    mxperry220 Member Posts: 493 Member
    Cholesterol Medication
    I have posted this once before but I was on cholesterol medication and discussed the stiffness and tiredness issue with my primary care physician. He suggested me to come off my cholesterol medication. Within a week of discontinuing the cholesterol medication 80% of the symptoms disappeared. If I sit for too long I still have some stiffness. I know he will want to put me on a different cholesterol medication once I see him this summer. If you are taking cholesterol medication I do not suggest discontinuing without your doctor's approval.
  • RoseC
    RoseC Member Posts: 559
    lil lady said:

    just not the same
    Hi..It will be 3 yrs.post treatment for me, and I am having the same problems I have difficulty walking a block. Most of my pain is in my right hip and weakness in my legs.It is very frustating

    Same here...I can walk about
    Same here...I can walk about 250 steps (I measured the distance with a pedometer) then I cramp all up, really bad, and have to sit for a while. (I'm 3 1/2 years out.) I've had x-rays, bone density, MRI of the back (I have a small bulge between two discs, but it's not enough to cause these symptoms), and I can't remember what other tests. I don't exercise (and should). Never ever had a problem walking until about a year out of treatment.

    I also have a tiny bit of arthritis in the back and bursitis in both hips. The arthritis and bursitis were with me prior to treatment - but I never had any issue with walking. I think Martha's right - exercise is key. Keep moving, keep stretching. I've tried in the past - it didn't help with the walking but it did help tremendously with flexibility. Trying deep tissue massage this week. I'm thinking it might be dense tissue or something. I'm hoping that the deep tissue massage will loosen those tissues (and I plan on following through with any exercises she gives me).

    Another thing is that I sit a lot. I have a desk job and am on the computer a lot when I get home. I don't think this helps very much, in fact I think it harms the situation. Don't really know how to get around it though. I get up at work often enough and try not to stay at the computer too long at home, but I really think I gotta get up off my butt a lot more.
  • mp327
    mp327 Member Posts: 4,440 Member

    Cholesterol Medication
    I have posted this once before but I was on cholesterol medication and discussed the stiffness and tiredness issue with my primary care physician. He suggested me to come off my cholesterol medication. Within a week of discontinuing the cholesterol medication 80% of the symptoms disappeared. If I sit for too long I still have some stiffness. I know he will want to put me on a different cholesterol medication once I see him this summer. If you are taking cholesterol medication I do not suggest discontinuing without your doctor's approval.

    Cholesterol med
    If you don't mind sharing, mxperry, what cholesterol med(s) are you on? I take Lipitor and Niaspan (prescription Niacin) and wonder if I would not feel so stiff if I wasn't taking these. My doctor insists that I take them so I do, but perhaps I need to discuss different meds with her. Thanks for any info you can provide.
  • Lorikat
    Lorikat Member Posts: 681 Member
    mp327 said:

    Cholesterol med
    If you don't mind sharing, mxperry, what cholesterol med(s) are you on? I take Lipitor and Niaspan (prescription Niacin) and wonder if I would not feel so stiff if I wasn't taking these. My doctor insists that I take them so I do, but perhaps I need to discuss different meds with her. Thanks for any info you can provide.

    Cholesterol meds...
    My doctor took me off Lipitor and then Crestor because of pain and stiffness. It worked, pain and stiffness abated. This was before the cancer was found. Now after tx and NO cholesterol meds both are back. Arrrggggg. Lorikat
  • mp327
    mp327 Member Posts: 4,440 Member
    Lorikat said:

    Cholesterol meds...
    My doctor took me off Lipitor and then Crestor because of pain and stiffness. It worked, pain and stiffness abated. This was before the cancer was found. Now after tx and NO cholesterol meds both are back. Arrrggggg. Lorikat

    Lorikat
    Thanks for the info. It's hard for me to tell if my pain and stiffness is from the treatment or the meds--or both. I wish I could go off the meds, at least for a little while to see if that helps. I hope you're doing well--thanks again.
  • Angela_K
    Angela_K Member Posts: 374 Member
    Alyse
    I was finding myself exhausted some days as well. A regular Pilates practice and subscribing to a Paleo diet has helped me greatly . . .like night and day, in fact. The late Joesph Pilates summed it all up when he said:

    "A body freed from nervous tension and over-fatigue is the ideal shelter provided by nature for housing a well-balanced mind that is always fully capable of successfully meeting all of the complex problems of modern living."

    Pilates focuses on strengthening your core or 'powerhouse' - abs, lower back and butt through control, breath, flow, precision, stability, and centering. It's gentle, limited to your natural range of motion, and just feels good. (Especially with the stiffness I have now in my hips.) I am now the Pilates instructor at one of our local hospitals' health club and I would be delighted to answer any questions you may have regarding this method of body conditioning. You will find this 20 minute video all you need to get started.
    http://www.youtube.com/watch?v=YW2eRv4kCag&NR=1&feature=endscreen
    but if this sounds like something you would be interested in pursuing, I encourage you to find a reputable instructor in your area to get the most out of it.

    Dropping grains, sugar and all processed food made a huge impact on my energy level. It is a committed lifestyle change, but for me, it has been worth it. I had to totally approach food differently from what had been hammered into my brain for years. The science is there to support the Paleo diet. I just had a check-up and the doctors said my bloodwork was "beautiful."

    I've started a blog, awakeontheconcho.blogspot.com, that you just may find helpful, too.

    And on an end note ~ I still don't have all of the energy (on a consistent basis) that I used to have. But I'm much, much closer now that I practice Pilates daily and have changed my eating.

    Hope some of this helps.

    Angela
  • sephie
    sephie Member Posts: 650 Member
    i am the same
    i will be 3 years post tx and do not have enough energy. i do try to stretch first thing in am and it helps with stiffness. but still am stiff and pain . my problem is that i still cannot sit for long periods of time due to tissue pain so i stand most all day. you are not alone. sephie
  • melissatrenary
    melissatrenary Member Posts: 1
    The Gerson Therapy
    Please just check it out!! Organic, specific, fresh food & Juicing. Also, check out the NIACIN therapy. Hope you feel better!
  • Captain11
    Captain11 Member Posts: 88
    Hi, Alyse. I am 2 years out
    Hi, Alyse. I am 2 years out and have the same problems as you. I recently asked my primary care doc for some advise. He said to do the core training, by lifting my arms up and to the right while stepping off with the left foot, then reversing to the other side and stepping off with the right foot. Do 50 reps, 3 times a day. Since changing over to the VA cancer clinic in my area, I have a new group of docs. My radiation doc suggested that after taking a hot shower to warm up the leg muscles, to rotate my torso like doing the hula or using a hula hoop, 5 minutes a day. I tried it and it helps. The thing with me is that because I lost that stamina, I either keep falling, or wobbling into things. I can walk about 20 steps at a faster pace, then I start walking sideways. The problem is in the balance. The chemo and rad, somewhat "damaged' the hip and leg muscles and nerves. My feet can't send the message to my brain that I am unstable. Walking helps. Water exercises help. Resistance stretches help, but because of the stiffness in my hips, I can't bend over to put the bands around my lower legs without toppling over. In time, with continued training, I hope to get back to where I was. I, too have to pull myself up after bending down to pick things up.
    Also, I used to be on Zocor, but once I started the tx's, my doc said that I needed to keep up my nutrition, so to eat whatever I could get in my system, and to never mind the "fats". They took me off the Zocor then, (I guess due to what that stuff can do to bones and can stiffen joints), and I have't gone back on it.
    My husband was just prescribed meds for prevention of gout. His onc told him that chemo can increase the risk of gout. Has anyone else been prescribed this???

    I hope the best for you Alyse. Take care. God bless.
  • RoseC
    RoseC Member Posts: 559
    Captain11 said:

    Hi, Alyse. I am 2 years out
    Hi, Alyse. I am 2 years out and have the same problems as you. I recently asked my primary care doc for some advise. He said to do the core training, by lifting my arms up and to the right while stepping off with the left foot, then reversing to the other side and stepping off with the right foot. Do 50 reps, 3 times a day. Since changing over to the VA cancer clinic in my area, I have a new group of docs. My radiation doc suggested that after taking a hot shower to warm up the leg muscles, to rotate my torso like doing the hula or using a hula hoop, 5 minutes a day. I tried it and it helps. The thing with me is that because I lost that stamina, I either keep falling, or wobbling into things. I can walk about 20 steps at a faster pace, then I start walking sideways. The problem is in the balance. The chemo and rad, somewhat "damaged' the hip and leg muscles and nerves. My feet can't send the message to my brain that I am unstable. Walking helps. Water exercises help. Resistance stretches help, but because of the stiffness in my hips, I can't bend over to put the bands around my lower legs without toppling over. In time, with continued training, I hope to get back to where I was. I, too have to pull myself up after bending down to pick things up.
    Also, I used to be on Zocor, but once I started the tx's, my doc said that I needed to keep up my nutrition, so to eat whatever I could get in my system, and to never mind the "fats". They took me off the Zocor then, (I guess due to what that stuff can do to bones and can stiffen joints), and I have't gone back on it.
    My husband was just prescribed meds for prevention of gout. His onc told him that chemo can increase the risk of gout. Has anyone else been prescribed this???

    I hope the best for you Alyse. Take care. God bless.

    My physical therapist gave
    My physical therapist gave me a couple of simple exercises to build strength in the upper legs and butt. She said I have 'no butt'. I guess our butts are supposed to have muscles. Who knew? Not me, haha!

    Like Captain, she said core strength is needed. Next time I see her (Thursday) she'll have a more complete exercise routine for me.

    Stand with your back against a wall. Put your feet out in front of you a bit and slightly apart. Slide your back down the wall, just a little, like a partial crouch. Hold for 10 seconds then slide back up the wall. Repeat 10 times. (I'm not at 10 yet, but am going to keep going till I get there and beyond.)

    Another one - lie down on your back on the floor with your knees bent, feet flat on the floor and slightly apart. Press the small of your back into the floor. Clutch your butt muscles together and raise your butt up. Hold for 10-20 seconds. Repeat 10 times. (These I can do easy - and they feel good for my back.)

    She also did some deep muscle massage in the groin area. It was only the first visit, but I think it helped.


    ps, The other thing I like to do is dancing. Find a really great song and just dance. Don't have to do much - it's good exercise and makes you feel really good. Don't do too much though. Stop when you feel the need to. I happen to love the good old 70's music (doo, doo, doo, lookin' out my back door).
  • duckyann
    duckyann Member Posts: 159
    RoseC said:

    My physical therapist gave
    My physical therapist gave me a couple of simple exercises to build strength in the upper legs and butt. She said I have 'no butt'. I guess our butts are supposed to have muscles. Who knew? Not me, haha!

    Like Captain, she said core strength is needed. Next time I see her (Thursday) she'll have a more complete exercise routine for me.

    Stand with your back against a wall. Put your feet out in front of you a bit and slightly apart. Slide your back down the wall, just a little, like a partial crouch. Hold for 10 seconds then slide back up the wall. Repeat 10 times. (I'm not at 10 yet, but am going to keep going till I get there and beyond.)

    Another one - lie down on your back on the floor with your knees bent, feet flat on the floor and slightly apart. Press the small of your back into the floor. Clutch your butt muscles together and raise your butt up. Hold for 10-20 seconds. Repeat 10 times. (These I can do easy - and they feel good for my back.)

    She also did some deep muscle massage in the groin area. It was only the first visit, but I think it helped.


    ps, The other thing I like to do is dancing. Find a really great song and just dance. Don't have to do much - it's good exercise and makes you feel really good. Don't do too much though. Stop when you feel the need to. I happen to love the good old 70's music (doo, doo, doo, lookin' out my back door).

    I am also feeling what the
    I am also feeling what the rest of you do and I am almost 3 years out. I sometimes even have more pain in my left side of my back, hip and through my groin area than I did before. This often scares me and I think why does it hurt more than it use too. But after my last appointment with my colorectal doctor in December he explained that the scar tissue actually continues to change and can thicken for a while. He called it "Fibrosis". I am trying to believe that is what is going on. I also have a desk job and I know I need to exercise more than I do. I still get quite tired after work and coming home to cook and clean that I really don't feel like doing anything else. I know it isn't a good excuse.

    Rose, I love to dance too and some times when I am at home I just turn that music on and dance around my house like a nut.....hahaha but you are right it does make you feel good!
  • mxperry220
    mxperry220 Member Posts: 493 Member
    mp327 said:

    Cholesterol med
    If you don't mind sharing, mxperry, what cholesterol med(s) are you on? I take Lipitor and Niaspan (prescription Niacin) and wonder if I would not feel so stiff if I wasn't taking these. My doctor insists that I take them so I do, but perhaps I need to discuss different meds with her. Thanks for any info you can provide.

    Cholesterol Medication
    I was taking Lipitor. My doctor took me off Lipitor. I am not taking anything now. I have been off Lipitor since July 2011. I have not had the tiredness or stiffness since discontinuing the Lipitor. I feel certain my primary care physician will want me to start taking some form of cholesterol medican when I have my physical in July.
    Mike
  • mp327
    mp327 Member Posts: 4,440 Member

    Cholesterol Medication
    I was taking Lipitor. My doctor took me off Lipitor. I am not taking anything now. I have been off Lipitor since July 2011. I have not had the tiredness or stiffness since discontinuing the Lipitor. I feel certain my primary care physician will want me to start taking some form of cholesterol medican when I have my physical in July.
    Mike

    Thanks Mike
    I appreciate your response to my question. I am taking Lipitor too--40 mg. per day. I really feel I am having some effects from it, but like you, my primary care doctor is insisting that I take a statin. I am due to see her soon and am going to have a discussion with her about this. I really would like to discontinue taking it. Thanks again!
  • Captain11
    Captain11 Member Posts: 88
    RoseC said:

    My physical therapist gave
    My physical therapist gave me a couple of simple exercises to build strength in the upper legs and butt. She said I have 'no butt'. I guess our butts are supposed to have muscles. Who knew? Not me, haha!

    Like Captain, she said core strength is needed. Next time I see her (Thursday) she'll have a more complete exercise routine for me.

    Stand with your back against a wall. Put your feet out in front of you a bit and slightly apart. Slide your back down the wall, just a little, like a partial crouch. Hold for 10 seconds then slide back up the wall. Repeat 10 times. (I'm not at 10 yet, but am going to keep going till I get there and beyond.)

    Another one - lie down on your back on the floor with your knees bent, feet flat on the floor and slightly apart. Press the small of your back into the floor. Clutch your butt muscles together and raise your butt up. Hold for 10-20 seconds. Repeat 10 times. (These I can do easy - and they feel good for my back.)

    She also did some deep muscle massage in the groin area. It was only the first visit, but I think it helped.


    ps, The other thing I like to do is dancing. Find a really great song and just dance. Don't have to do much - it's good exercise and makes you feel really good. Don't do too much though. Stop when you feel the need to. I happen to love the good old 70's music (doo, doo, doo, lookin' out my back door).

    Thanks for the advice,
    Thanks for the advice, Rose... I love to dance, also, but my clutziness kicks in a lot faster than the dance steps. My doc also said something about the radiation proctitis, which is why the butt hurts more now than it did before all this happened. Actually, I had no pain or symptoms of any kind. And I eat more fruit and veggies than most people... I am a walking anti-oxidant... yet, i still got the Big "C". Thanks again, and God Bless.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    Captain11 said:

    Thanks for the advice,
    Thanks for the advice, Rose... I love to dance, also, but my clutziness kicks in a lot faster than the dance steps. My doc also said something about the radiation proctitis, which is why the butt hurts more now than it did before all this happened. Actually, I had no pain or symptoms of any kind. And I eat more fruit and veggies than most people... I am a walking anti-oxidant... yet, i still got the Big "C". Thanks again, and God Bless.

    Problems
    I have been diagnosed with ataxia, maybe cancer mediated. I am currently walking with a cane. I am still in the process of being diagnosed with the specific type. 8 weeks ago, I was surfing and walking my dogs. I now have a permanent disabled placard. Follow your symtoms until u have an answer. To all of you going thru tx or willbe god bless you and I hope it is easy on you.
  • sandysp
    sandysp Member Posts: 868 Member
    Lyrica
    I hate to sound like a commercial. I am suffering with these types of symptoms too. I do Tai Chi and Chi Gong which really helps but also take Lyrica three times a day. I know when I am late or missed a dose. It was prescribed to me before I was diagnosed for pain in my legs mostly that now I believe was caused by the tumor and now by the scar tissue. This is the first week I got on my exercise bike. I stayed on for 8 minutes. My right leg pulls to the right and I have to throw my leg forward when I get fatigued which is often. I walk our dog a mile a day most days. I Fell flat on my face last week. It is interesting to be on this site again. What is described here is exactly what has been troubling me . . . the fear that I am getting worse and the cancer is back. It seems the scar tissue is changing. I have had some sharp jagged pains in my anus from time to time and can really feel where the tumor was almost like when I first was diagnosed and doctors were pushing on it during examination. It really helps to hear you bring this up. Thanks.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    sandysp said:

    Lyrica
    I hate to sound like a commercial. I am suffering with these types of symptoms too. I do Tai Chi and Chi Gong which really helps but also take Lyrica three times a day. I know when I am late or missed a dose. It was prescribed to me before I was diagnosed for pain in my legs mostly that now I believe was caused by the tumor and now by the scar tissue. This is the first week I got on my exercise bike. I stayed on for 8 minutes. My right leg pulls to the right and I have to throw my leg forward when I get fatigued which is often. I walk our dog a mile a day most days. I Fell flat on my face last week. It is interesting to be on this site again. What is described here is exactly what has been troubling me . . . the fear that I am getting worse and the cancer is back. It seems the scar tissue is changing. I have had some sharp jagged pains in my anus from time to time and can really feel where the tumor was almost like when I first was diagnosed and doctors were pushing on it during examination. It really helps to hear you bring this up. Thanks.

    Oh sandy!
    Gosh it was good to hear from u too. So sorry u had such a bad fall. I am taking motrin 800 for pain. This is quite a journey we r on. I am so glad this thread got started. I felt so alone before with my aches and pains.