Weakness in legs; knee giving out

ww0808ww

Hi, all . . . .

I was diagnosed stage 3B in January 2013; began treatment Feb. 4, and completed treatment March 28.  I’ve spent the last 3-1/2 months becoming acquainted with the new me, as I have tried to come to grips with a variety of side effects.

About 3 weeks ago, I began to notice a profound weakness in my legs.  I found I was having problems going from sitting to standing, and it rapidly became hard to navigate stairs to the basement to do laundry.  Climbing the one step to get into my house was difficult as it felt like my knee was about to give way.

Over the last several days, I’ve fallen a number of times  -  getting out of the car, on stairs, walking across my lawn, etc.  In each situation, I’ve had difficulty getting back to my feet.

The consensus among my doctors and physical therapist is that radiation has pretty well destroyed my core and butt muscles.  I’ve been given a series of exercises to do, but fatigue incredibly quickly.  Nevertheless, I’ll forge ahead with them.  But I confess to being a bit panicky about this latest issue.

Have any of you encountered such problems? 

Many, many thanks for your responses!

mxperry220

Yes

I am 4 years 6 months porst treatment.  I was stage two and still have some joint stiffness.  I have some minor difficulty getting out of my chair i fI sit too long or if I am sitting on the floor.  The first two years post treatment were much more difficult for me as far as joint stiffness and difficulty getting up.  I now walk 4- 5 times weekly for 30 minutes and work out with weights twice a week.

 

As far as fatigue I still do not have the stamina I had before cancer.  I think some of it may be age related.  I will be 63 in October but have always been physically active.  For the first two years I had extreme fatigue and would get out of breath easily if I did too much physical exercise.

Mike

mp327

Leg Weakness

Any post-treatment problems I've had with my lower extremities seem to be joint stiffness in my hips with limited flexibility.  I'm pretty sure this is related to the radiation treatment.  As for weakness, I experience that occasionally, but it is related to the fact that I am a runner.  I'm also coming up on 60 yo, so it's most likely just my age creeping up on me.  I'm sorry you are having a rough time.  Falling is definitely not good!  I hope you can find a way to see some imiprovement.

ww0808ww

Thanks for your comments. 

Thanks for your comments.  I'm dealing reasonably well with all my side effects  -  except for this one. 

 

My joints  -  knock on wood  -  are not giving me any trouble.  Pain and discomfort I can learn to cope with.  But my issue seems to be more of a soft tissue thing, where the muscle tone has been destroyed.  I'm frankly in fear of falling and not being able to get up.  [I fell twice yesterday.]  Or going to the bathroom, and not being able to get off the toilet.

 

By the way  -  I'm 65.

 

Aarrgh!

 

 

Rej0328

Ooh do I feel better.  I am two years out of treatment and 68.  Just starting to get good energy back, and definitely have the hip pain.  I thought I was a wimp.  But now I know I'm human and getting old.  Darn that's disappointing.  But I thanked my cancer doctor for saving my life so that I could start feeling old age pains.  Yippie

 

You are recently out of treatment so you need to be patient.  It really takes  time to feel better.  Bless you

 

The ole lady

Rita

TraceyUSA

Me 2

I finished treatment in mid-March as well.  Shortly thereafter I had much stiffness through the hip & thigh area which I attributed to the months of little physical activity that I had through treatments.  Well, after reading my first MRI report post treatment, I found that it was a physical side effect from the radiation (can't remember all the medical terms).  I started going to a yoga class once a week at the end of April.  After a few classes I noticed a vast improvement.  Now, I feel that my flexability is pretty close to where it was prior to treatment and the stiffness is gone.  Hope you find relief.

TraceyUSA

Me 2

I finished treatment mid-March.  Shortly thereafter, I had much stiffness in the hip & thigh area which I attributed to the months of physical inactivity that I had during treatment.  After reading my first post-treatment MRI results, I found that this is a physical side-effect of the radiation treatments.  At the end of April, I started taking a yoga class once a week and found that it really helped.  Today, my flexibility is close to where it was prior to treatment and the stiffness is gone.  I hope you find relief.

sandysp

Xi Gong (Chi Gong) Tai Chi

I bought some Chi Gong and Tai Chi for health DVD's and used them throughout my treatment and after. These helped me with breathing, flexibility, core and leg strength.

Later when I felt good enough to join a gym I found out I could kickbox and do Zumba as good or better than those 30 years my junior. I owe it all to having done Tai Chi. I now do Yoga, but I highly recommend some basic Chi Gong. There are some very good knee strenthening exercises. Keep it simple. 15 minutes a day at first. I found my pain levels were greatly reduced due to the meditational style of the exercises. I would not have been ready for the Yoga class I attend now without having done these exercises either.

Are your legs both the same size? I am just wondering if you are suffering from Lymphedema. I found out that was one of my issues. There are some things you have to do to get yourself back to normal that are quite time consuming but very worth it. Besides the fact I wear compression stockings every day, my pain levels are way down.

All the best,

Sandy

islandgirlculebra

Leg Weakness

I was diagnosed Stage IIIB in Feb. 2012, so you're about a year behind me. I am younger than you (56), but I too have weakness in my thigh muscles, and also pain in the buttock muscles.  I fortunately have not had the problem with falling down as you have. Immediatley after treatment my leg muscles were so weak I had diffuctly just getting up my porch steps. My biggest problem was that I was unable to get back up after squatting down, such as to get something out of the bottom bin of the refrigerator.  Thankfully, it IS slowing getting better. Just recently I realized that I was able to pick myself up from a squat using just my leg muscles. (A EUREKA moment for me). Not saying I can do it all the time or more than once, but sometimes I can.  I exercise some, but I'm not the dedicated exerciser like others on this site. I do think exercise helps but it's still a slow healing process.....  Have you had a bone scan? I had one a while back and found that I have oesteopenia in my hip, which they say often happens after radiation to the pelvis. My Dr. told me to take calcium twice a day. I was told by my Family Physician that the thigh and butt pain is nerve damage. I've also read this it's tissue damage. Whatever it is, it feels like sore muscles that have "shrunk" and are inflexible..... Just wanted to tell you that it does get better, but sloooowly..... Perhaps the healing would happen faster with more exercise and yoga as others suggest. My best to you.

fourbeaner

Oh my gosh, I'm not the only one!

I got on the internet trying to find out if there was a reason for the onset of leg weakness so far out of my treatment!  I am 48, in decent shape, right smack in the middle of my weight range for my age and height.  Have never had this problem before, but about 2 weeks ago started noticing my legs felt a little noodly.  I has gotten worse and I am now experiencing some numbness and tingling in my feet and toes.  I am 7 weeks out of chemo and radiation.  I also began having pretty bad pain from hips all the way down legs.  Several weeks ago, my lower back also began to hurt in the same area where I had a work injury 3 years ago.   I can't help but think this is all related to the radiation, and all related to each other.  Had an MRI that the docs told me was "clean" as far as not showing cancer in my spine, but I know I already have degenerative disc disease in my L4 and L5 vertebrae.

Do you or did you have pain as well, or any of the other crazy things I've listed?  Thanks in advance!

mp327

fourbeaner said:

Oh my gosh, I'm not the only one!

I got on the internet trying to find out if there was a reason for the onset of leg weakness so far out of my treatment!  I am 48, in decent shape, right smack in the middle of my weight range for my age and height.  Have never had this problem before, but about 2 weeks ago started noticing my legs felt a little noodly.  I has gotten worse and I am now experiencing some numbness and tingling in my feet and toes.  I am 7 weeks out of chemo and radiation.  I also began having pretty bad pain from hips all the way down legs.  Several weeks ago, my lower back also began to hurt in the same area where I had a work injury 3 years ago.   I can't help but think this is all related to the radiation, and all related to each other.  Had an MRI that the docs told me was "clean" as far as not showing cancer in my spine, but I know I already have degenerative disc disease in my L4 and L5 vertebrae.

Do you or did you have pain as well, or any of the other crazy things I've listed?  Thanks in advance!

fourbeaner

The numbness and tingling you are having may be related to the chemo.  Peripheral neuropathy (numbness and tingling in the extremities) can be a common side-effect of some chemo drugs.  I'm not sure if 5FU and Mitomycin are on that list, but I believe Cisplatin may be, which is sometimes used in place of the Mito to treat anal cancer.

sandysp

fourbeaner said:

Oh my gosh, I'm not the only one!

I got on the internet trying to find out if there was a reason for the onset of leg weakness so far out of my treatment!  I am 48, in decent shape, right smack in the middle of my weight range for my age and height.  Have never had this problem before, but about 2 weeks ago started noticing my legs felt a little noodly.  I has gotten worse and I am now experiencing some numbness and tingling in my feet and toes.  I am 7 weeks out of chemo and radiation.  I also began having pretty bad pain from hips all the way down legs.  Several weeks ago, my lower back also began to hurt in the same area where I had a work injury 3 years ago.   I can't help but think this is all related to the radiation, and all related to each other.  Had an MRI that the docs told me was "clean" as far as not showing cancer in my spine, but I know I already have degenerative disc disease in my L4 and L5 vertebrae.

Do you or did you have pain as well, or any of the other crazy things I've listed?  Thanks in advance!

You are still early in the healing department

I think seven weeks is still pretty early in the healing department. It might be you are expecting too much. Fatigue is a real issue. When you are rested, everything works better. But we just want to push on, us hard workers and say to the body "what is wrong with you? I have stuff to do!"

So my advice is to be patient and to try to explain to others that you are still healing from your treatments. I totally agree with Martha that you are experiencing neuropathy now. You will need to take your shoes off, give yourself a foot massage and elevate your legs. Even fifteen minutes every couple of hours will help you a great deal. I have a problem with fibromyalgia and the chemo made the neuropathy much worse I already had for years. Lyrica is a big help to me but self care is the most important element. Try to be patient with your body. It has an amazing mechanism for healing itself but you have to give it time and rest.

God bless you.

Sandy

boumerbmr1

ww0808ww said:

Thanks for your comments. 

Thanks for your comments.  I'm dealing reasonably well with all my side effects  -  except for this one. 

 

My joints  -  knock on wood  -  are not giving me any trouble.  Pain and discomfort I can learn to cope with.  But my issue seems to be more of a soft tissue thing, where the muscle tone has been destroyed.  I'm frankly in fear of falling and not being able to get up.  [I fell twice yesterday.]  Or going to the bathroom, and not being able to get off the toilet.

 

By the way  -  I'm 65.

 

Aarrgh!

 

 

muscle and tendon flexabilty

I am out of therapy just a few months and I had told the oncologist about not being able to spread my legs apart without them being stretched to the limit and bending down to tie my shoes felt like my gluts were going to tear. He said it was a side effect of the radiation and sent me for physical therapy which helped some.  I was doing my own stretching at home with palate bands but found out I wasn't holding the stretch long enough.  I have been doing these stretches everyday now and if I don't do them for just one day I can really notice the difference. 

I hope you will find that the stretching work out helps. Yay! We are alive to feel the discomfort.  Never thought I would be happy about a pain in my a**.

fourbeaner

I thought I was the only one!

Hey,

 

I feel like our symptoms/side effects are VERY similar.  I was treated for 3B and received 30 radiation treatments along with 2 rounds of 5-FU.  I finished treatments in June.  About a month ago, I noticed some weakness in my legs, but just thought it was a fluke wobbly leg day.  I began falling, as well, and the weakness continued to get worse.  I have fallen so many times I have lost count, but I have no pain.  I also always feel like my knees are going to give out because they do.  I am learning (teaching myself) to walk by locking my knees backward each time I take a step.  I also had real trouble getting up after a fall or after sitting on the floor, blanket, etc. as well as being able to get up from a seated position.  I have to push myself up, and now I cannot get up at all if I am on the ground.  I am putting everything I have into trying and there is no movement at all.  It's like my legs are made of concrete.  I have to have something about seat height, back up to it, and push myself onto the seat.  Does that sound like your problems?  I had some tests run last week and was told I have demyelination (damage to the myelin that protects my nerves).  The doc wouldn't elaborate, telling me to discuss the results with my doc during my follow-up this week.  I also have numbness to the touch on both legs and tingling in my feet.

 

Sure would appreciate hearing your thoughts.  Mine could also just be bad timing.  I have a LOT of other health problems and have since I was 16.  I am 48 and already have one autoimmune disease, and I think the doc may be thinking MS, which is also an autoimmune disease.  My sister has it as well and a familial connection is suspected.

 

Hope you are doing better!

 

fourbeaner

BTW...

I just remembered....  When I'm on the floor doing something walking around on my knees, I am not even steady then.  I wonder/think that the actual problem may not be knees but hips that cannot support the upper body, and consequently the knees give out.  I have wondered that then realized the whole wobbly-when-I'm-not-even-standing thing about a week ago.  Interesting if nothing else.  Also just read your comment about being afraid to fall or not get off the toilet.  We have much in common.  Maybe, if you don't mind, you could try the knee thing and see if you are still unsteady "standing" on your knees.

 

Have a good/better one!

 

Brandy

fourbeaner

mp327 said:

fourbeaner

The numbness and tingling you are having may be related to the chemo.  Peripheral neuropathy (numbness and tingling in the extremities) can be a common side-effect of some chemo drugs.  I'm not sure if 5FU and Mitomycin are on that list, but I believe Cisplatin may be, which is sometimes used in place of the Mito to treat anal cancer.

Thanks mp327

Yeah, I knew that was probably the case with the numbness and tingling, just wasn't sure about the pain.  Now the pain is completely gone but replaced with legs that are very unsteady, knees giving out, etc.  I fall a lot and cannot get up from a squatting position or if I fall.  I have to find something about chair height, back up against it, and push myself up until I can slide onto the seat.  From that position, I can push myself into a standing position.  It's frightening and sometimes humiliating b/c I have on several occasions had to crawl to something the proper height.  That must look very odd to see a 48 year old crawling.  You gotta do what you gotta do.  As far as I can tell I really have no other lasting effects from any of my treatments except this, which is huge obviously.  But I've always been very active and the thought of having to use a crutch/crutches permanently (doc says) saddens me.  Teaching myself to walk by buckling my knees backward to keep them from giving out.  On well (sigh), I appreciate your comment!

 

Hope you are well,

Brandy

mp327

fourbeaner said:

BTW...

I just remembered....  When I'm on the floor doing something walking around on my knees, I am not even steady then.  I wonder/think that the actual problem may not be knees but hips that cannot support the upper body, and consequently the knees give out.  I have wondered that then realized the whole wobbly-when-I'm-not-even-standing thing about a week ago.  Interesting if nothing else.  Also just read your comment about being afraid to fall or not get off the toilet.  We have much in common.  Maybe, if you don't mind, you could try the knee thing and see if you are still unsteady "standing" on your knees.

 

Have a good/better one!

 

Brandy

Brandy--

I didn't want to alarm you by mentioning MS, but that entered my mind as I was reading your symptoms.  Since you mentioned it yourself, I will tell you that I would definitely get checked out for it.  I used to work in a physical therapy clinic and we often had patients who had MS, some presenting with symptoms such as yours.  I hope you can get some answers and that it's nothing serious.  If it's just general weakness from muscle atrophy or non-use, that can be fixed with a strengthening exercise program.  Please let us know what you find out.

Missgrace

mp327 said:

Brandy--

I didn't want to alarm you by mentioning MS, but that entered my mind as I was reading your symptoms.  Since you mentioned it yourself, I will tell you that I would definitely get checked out for it.  I used to work in a physical therapy clinic and we often had patients who had MS, some presenting with symptoms such as yours.  I hope you can get some answers and that it's nothing serious.  If it's just general weakness from muscle atrophy or non-use, that can be fixed with a strengthening exercise program.  Please let us know what you find out.

I also experience extreme

I also experience extreme weakness in my hips. When I bend over or reach for something on the bottom shelf at the grocers', I get this stabbing pain, like a charlie horse and I cannot stand back up for a a minute or two. Sure hope it doesn't turn out to be MS, Brandy, although I have two friends who have dealth with it and are doing great!