pain, falling, weak legs and swelling

Cjeepgirl

I can't thank you all enough. My doctors all made me feel like I was going crazy, everyone of them said "I never heard of such a thing" and some were like are you blaming us or radiation on it??  I am not trying to blame just trying to understand, I am so very thankful to be alive and have the cancer gone. And in the wee hours of the morning I found you all on this site, thank you. I was diagnosed June 2012, I finished my last treatment Sept 2012, and got my 1st all clear Dec. 2012. I thought I had faired treatment rather well, other than the excrutiating pain going to the bathroom, I lived on Chobani yogurt and still do. Until right at the end, in Dec 2012, I had compained of muscle weakness, it was harder to get up off the floor and really getting hard to do stairs, and they never heard of it and did nothing to help. I complained of pain all over, muscle, bone and joint, and one PA suggested I had fibromyalgia???  what???  Then in Dec/Jan I started falling. Just spontaneously my knees would give out and I'd fall, I then began hurting all over from the injuries. I started using a walker and stopped walking my dog after cracking my head on the sidewalk in a fall. I got kness braces with metal that locked out so my knees wouldn't collapse. A girl at work's uncle had prostate CA and radiation in the same general area as I and found he had the same "falling" problem. I could not do stairs at all, I fell down the stairs 3-4 times and started sliding down on my butt. It was so bad I was falling every other day. I had a really hard time getting up from a seated position and got a raised toilet seat.  Today, I still am having a hard time getting up, I do feel a little bit stronger...very little, last fall was last week, knee gave out and I fell over sideways in the kitchen while baking. I am starting back doing some PT exercises.  Just in the last couple/few weeks my legs began swelling, and now even my hands are swelling. The pain can be very intense, it hurts to roll over in bed, everything I do hurts.  I also find that if I sit for too long, I have a hard time walking immmediately after getting up. On my 45 min drive to work I have to stand next to the car for a few minutes until my legs are ready to move.  I still have some really bad days. And the constipation is horrible, I take 200mg of colace twice a day. I can't fit any more fiber into my diet. My surgeon suggested Metamucil and that completely blocked me for 6 days. The radiation oncologist sent me to PT and said he'd see me in Sept., I tried for 4 weeks to get a referral to a neurologist and tried to set an appt with the oncologist to get it and they said she doesn't want to see me until Sept. I don't want to see the surgeon cause all he wants to do is look, he doesn't help with anything else and his last biopsy actually caused problems leaving me with a flap with bleeds when I get constipated, and my family doctor is the one who told me I had hemorrhoids. But everyone tells me I look great.  ugh.

 

Phoebesnow

Troubles

Sorry to hear about your troubles.  U need a neurolgist, a good one.   Ataxia is a side effect of 5 fu.   Try the tandem gait walk.  If you can do 25 steps, u r fine.   Ataxia is very rare, so is anal cancer.

 

Are you taking any medications.  I would look up side effects.

M1234

falling

Finished treatment December 5, 2012.  Diagnoised wth nerve damage from radiation early Feb 2013.  Currently taking 600mg of gabapentin 3x a day.  I too have had several falls.  The falls are related to the loss of ankle and knee refex per drs.  Please see a neurologist as soon as possible.  My understanding is the radiation damage is at the nerve root in the lumbar spine through the sacral spine as well.  I do find the medcine helps with the burnng and the stabbing pain, ect. I do my best to exercise in hopes that it will improve my balance. But...I still have falls that are unexpected.  I plan to try using a walking stick vs a cane in hopes of it providing better stability.  A friend of mne who hikes suggested using 2 walking sticks. FYI - most of my walking takes place on uneven ground due to where I live. Keep us posted on your progress.  Wishing you the best and hoping you get some assistance from your medical team pronto.

Phoebesnow

M1234 said:

falling

Finished treatment December 5, 2012.  Diagnoised wth nerve damage from radiation early Feb 2013.  Currently taking 600mg of gabapentin 3x a day.  I too have had several falls.  The falls are related to the loss of ankle and knee refex per drs.  Please see a neurologist as soon as possible.  My understanding is the radiation damage is at the nerve root in the lumbar spine through the sacral spine as well.  I do find the medcine helps with the burnng and the stabbing pain, ect. I do my best to exercise in hopes that it will improve my balance. But...I still have falls that are unexpected.  I plan to try using a walking stick vs a cane in hopes of it providing better stability.  A friend of mne who hikes suggested using 2 walking sticks. FYI - most of my walking takes place on uneven ground due to where I live. Keep us posted on your progress.  Wishing you the best and hoping you get some assistance from your medical team pronto.

Falling

 

 

U can also try the babinski reflex.

 

 

Marynb

Phoebesnow said:

Falling

 

 

U can also try the babinski reflex.

 

 

Falling
Gee, I have had several unexplained falls too. I never connected them to treatment. Now, I am wondering.

Babinski reflex?

mp327

Cjeepgirl

I would agree that you probably need to see a neurologist.  Please keep pursuing a consult with one.  Falls are never good, but for anyone who's had pelvic radiation, they can be much more at risk because of bone damage/weakening.  Your issues with falling definitely need to be addressed. 

NYinTX

M1234 said:

falling

Finished treatment December 5, 2012.  Diagnoised wth nerve damage from radiation early Feb 2013.  Currently taking 600mg of gabapentin 3x a day.  I too have had several falls.  The falls are related to the loss of ankle and knee refex per drs.  Please see a neurologist as soon as possible.  My understanding is the radiation damage is at the nerve root in the lumbar spine through the sacral spine as well.  I do find the medcine helps with the burnng and the stabbing pain, ect. I do my best to exercise in hopes that it will improve my balance. But...I still have falls that are unexpected.  I plan to try using a walking stick vs a cane in hopes of it providing better stability.  A friend of mne who hikes suggested using 2 walking sticks. FYI - most of my walking takes place on uneven ground due to where I live. Keep us posted on your progress.  Wishing you the best and hoping you get some assistance from your medical team pronto.

M1234

I had last radiation dose 3/18/13 and have had tingling and weird sensations in legs but only at bedtime, so interferes with sleep....how did they diagnose radiation as cause? I had pelvic radiation at MDA and nobody said anything about any side effects.....