Has anyone had leg pain after pelvic radiation?

magillilnb

My radiation ended in early December and for the last month, I've had leg pains in my left leg.  I thought it was sciatica, but the symptoms don't seem right for that. I hurt in the middle of my buttock, then down the side and front of my leg. It feels a little like shin splints and sciatica and is starting to be all the time instead of intermittent. I can walk and actually feel best when walking. I have more pain when I sit and it's worse when I lie down. I'm seeing my radiation oncologist for a follow up on Monday, but wanted to see if any of you had experienced something similar.

Thanks,

Nancy

 

eihtak

magillilnb.....

Hi, yes I did notice unusual leg pain about 3-6 months post treatment. I definately felt better when walking or stretching. (Funny how the body naturally knows whats best at times) I also was able to find a gentle yoga class specifically for cancer recovery that was wonderful. I am 3yrs post treatment now and as long as I do at least some light physical activity daily, though I usually do more, I have no more pain.....at least for now!

Although the radiation is targeted at the tumor site, I always compare it to a fire pit and how the heat and ashes burn and singe the area far from the center of the pit. Sometimes that field is permanently damaged, but much will re-grow with a little work and attention. So, in that way, the muscles, tendons, bones, etc. in your hips and legs have suffered some trauma and need regular exercise to rebuild.

Thats just my thinking of course so please run it past your doctor to rule out any serious conditions.

Be well.

katheryn

z

Nancy

I too had leg pain and buttock pain.  On 6-30-14 it will be 5 years ned from the end of tx.  I think the leg pain lasted up to the 2nd year.  It was more like it felt better if I pushed on it like breaking up tissue, I really don't know.  I hope you will find out and let us know.  I wish you well, Lori

RoseC

z said:

Nancy

I too had leg pain and buttock pain.  On 6-30-14 it will be 5 years ned from the end of tx.  I think the leg pain lasted up to the 2nd year.  It was more like it felt better if I pushed on it like breaking up tissue, I really don't know.  I hope you will find out and let us know.  I wish you well, Lori

I had/have a lot of buttock

I had/have a lot of buttock pain too. In the beginning (I'm over five years out of treatment) it felt too that I should be pushing against it. Walking up a slight inclimb felt good. But the PT said I shouldn't do anything that causes pain. So I didn't. And I still have problems with walking distances more than 250 ft. My hips and leg (right leg) clamp up then I have to stop and rest for about 10 minutes. I often wonder if I should have listened to my instincts and pushed further, walked up the hill rather than not. Z, how is your walking now?

lp1964

Dear Nancy,

I finished my radiation for rectal cancer in July and my chemo 2 months ago. I'm relatively young too, but my body has not been the same. My hip joints hurt to the extent that i can not put my socks on, my lower back and rib cage are painful too. Radiation and chemo mess up the joints, muscles, nerves and can give us long term problems. I went for physical therapy but did not help much. Trying to do exccercise may help but will take time.

Good luck and let us know what the doctors say.

Laz

mxperry220

5 Plus Years Out and Still

I am 5 years 3 months post treatment and still have some hip. leg, and feet pain occasionally particularily if I sit for long periods of time.  I did not have these issues prior to treatments.

Mike

z

RoseC said:

I had/have a lot of buttock

I had/have a lot of buttock pain too. In the beginning (I'm over five years out of treatment) it felt too that I should be pushing against it. Walking up a slight inclimb felt good. But the PT said I shouldn't do anything that causes pain. So I didn't. And I still have problems with walking distances more than 250 ft. My hips and leg (right leg) clamp up then I have to stop and rest for about 10 minutes. I often wonder if I should have listened to my instincts and pushed further, walked up the hill rather than not. Z, how is your walking now?

RoseC

Hello, My walking is fine.  I am on my feet at work about 4 hours a day.  I don't have any pain now.  So I guess we all heal in our own time.  I hope your pain will be less and less over time.  Lori

magillilnb

Katheryn, Lori, RoseC, Laz, and Mike

Thanks for responding with your post treatment experiences.  It's always comforting to know that I'm not the only one. I'll post what the doctor says after I talk to him. 

Nancy

 

sandysp

Same size?

Check carefully to make sure both legs are the same size. I developed Secondary Lymphedema (apparently I already had primary Lymphedema and had no idea). I had a lot of pain in my legs even before treatment (apparently because of the lymph node involvement) particularly the right leg which gave me the most trouble. They both would feet very heavy. 

After going for physical therapy with a lymphedema specialist and given a series of treatments, and wearing compression garments daily I can now manage the pain and my legs can even feel lightweight and pain free. I have to give myself the MLD treatments regularly, though or the pain comes back. MLD stands for Manual Lymphatic Drainage.

Radiologists have no interest in this subject. You need a Cancer Treatment Rehabilitation Center. MSKCC has one. My doctor there is a Physiologist and Neurologist. I felt depressed when I was first diagnosed but today putting on my stockings in the morning is the first thing I do and I don't give it a second thought. I am looking forward to my new spring colors. MLD massages help me go to sleep at night.

If your leg meets any of the above criteria, don't wait but start treatment asap. Lymphedema is like cancer in a way, it only gets worse if you ignore it. I am happy to have managed to stay stage I Lymphedema. There is a big difference between Stage I and II or III or IV.

Good luck to you. If it is this, I am here to support you. If it isn't hopefully you will find out what it is. Even scar tissue in the area can press against nerves and imitate sciatica.

Sincerely,

Sandy

islandgirlculebra

sandysp said:

Same size?

Check carefully to make sure both legs are the same size. I developed Secondary Lymphedema (apparently I already had primary Lymphedema and had no idea). I had a lot of pain in my legs even before treatment (apparently because of the lymph node involvement) particularly the right leg which gave me the most trouble. They both would feet very heavy. 

After going for physical therapy with a lymphedema specialist and given a series of treatments, and wearing compression garments daily I can now manage the pain and my legs can even feel lightweight and pain free. I have to give myself the MLD treatments regularly, though or the pain comes back. MLD stands for Manual Lymphatic Drainage.

Radiologists have no interest in this subject. You need a Cancer Treatment Rehabilitation Center. MSKCC has one. My doctor there is a Physiologist and Neurologist. I felt depressed when I was first diagnosed but today putting on my stockings in the morning is the first thing I do and I don't give it a second thought. I am looking forward to my new spring colors. MLD massages help me go to sleep at night.

If your leg meets any of the above criteria, don't wait but start treatment asap. Lymphedema is like cancer in a way, it only gets worse if you ignore it. I am happy to have managed to stay stage I Lymphedema. There is a big difference between Stage I and II or III or IV.

Good luck to you. If it is this, I am here to support you. If it isn't hopefully you will find out what it is. Even scar tissue in the area can press against nerves and imitate sciatica.

Sincerely,

Sandy

Me Too.

Two years post treatment now and I still have muscle pain and weakness in thighs and hip pain and stiffness, some days worse than others. Seems like the warmer weather lately has been helping...... Sandysp, you are so lucky to have a rehabilitation center. My Doctors just looked at me like they didn't know what I was talking about when I described my muscle pain after treatment ended. The only Doctor who acknowledges the damage radiation does is my General Family Doctor who is also an Osteopathic Physician. 

 

 

magillilnb

sandysp said:

Same size?

Check carefully to make sure both legs are the same size. I developed Secondary Lymphedema (apparently I already had primary Lymphedema and had no idea). I had a lot of pain in my legs even before treatment (apparently because of the lymph node involvement) particularly the right leg which gave me the most trouble. They both would feet very heavy. 

After going for physical therapy with a lymphedema specialist and given a series of treatments, and wearing compression garments daily I can now manage the pain and my legs can even feel lightweight and pain free. I have to give myself the MLD treatments regularly, though or the pain comes back. MLD stands for Manual Lymphatic Drainage.

Radiologists have no interest in this subject. You need a Cancer Treatment Rehabilitation Center. MSKCC has one. My doctor there is a Physiologist and Neurologist. I felt depressed when I was first diagnosed but today putting on my stockings in the morning is the first thing I do and I don't give it a second thought. I am looking forward to my new spring colors. MLD massages help me go to sleep at night.

If your leg meets any of the above criteria, don't wait but start treatment asap. Lymphedema is like cancer in a way, it only gets worse if you ignore it. I am happy to have managed to stay stage I Lymphedema. There is a big difference between Stage I and II or III or IV.

Good luck to you. If it is this, I am here to support you. If it isn't hopefully you will find out what it is. Even scar tissue in the area can press against nerves and imitate sciatica.

Sincerely,

Sandy

Sanysp

Thanks for your response and I hope you keep your Lyphedema in check.  Sounds like you're doing a great job.

My left leg doesn't feel heavy, and my legs are the same size, but I plan to see my PCP, and I'm pretty sure she'll send me for physical therapy. My radiation oncologist said he doesn't think it's from radiation, but that's what I expected him to say. He's sending me for a bone scan, which I don't think will show anything. He thinks it's arthritis, but I don't believe it's that, either. I have been doing some exercises on my own and have noticed that my left leg hamstrings are really tight and hurt when I try to stretch them. I think the issue is somewhere up higher and is referring down my leg. I hope to find out what before too long.

Nancy

magillilnb

islandgirlculebra said:

Me Too.

Two years post treatment now and I still have muscle pain and weakness in thighs and hip pain and stiffness, some days worse than others. Seems like the warmer weather lately has been helping...... Sandysp, you are so lucky to have a rehabilitation center. My Doctors just looked at me like they didn't know what I was talking about when I described my muscle pain after treatment ended. The only Doctor who acknowledges the damage radiation does is my General Family Doctor who is also an Osteopathic Physician. 

 

 

islandgirlculebra

Thanks for your response. I'm sorry you're still having pain, and I hope it's becoming more manageable. Do you do any exercises, or would that help?

Nancy

 

islandgirlculebra

magillilnb said:

islandgirlculebra

Thanks for your response. I'm sorry you're still having pain, and I hope it's becoming more manageable. Do you do any exercises, or would that help?

Nancy

 

Magillilnb

I do a little yoga when it gets bad and it seems to help. I've had fibromyalgia-like symptoms for years, but right after the radiation ended I noticed the muscle pain which starts at the buttocks and thighs, along with thigh muscles which feel tight and weak, and pain and stiffness in my hips.  The best way to describe it is a feeling that the muscles  in my buttocks and thighs have shrunk and become inflexible.  If I get down into a squat I have to hang onto something to get back up, or launch myself up with my hands, something I never had to do before the radiation treatments. I've joined the YMCA and have been exercising more lately. I have been feeling better lately - not really sure if it's the exercise or the warm weather, because warm weather has always made me feel better. My Doctors never acted like they knew much about it, and it doesn't surprise me that your Radiation Doctor says it's not from radiation.....but I think it definitely is. Don't know why they deny it.  Most of the women on this site say that yoga and pelvic physical therapy helped them alot.  My General Physician, who is the only one who acknowledges the effect of radiation on muscles, calls it nerve damage, but the explanation I read on a website that makes the most sense to me is that scar tissue caused by radiation doesn't "slide" like normal muscle tissue. I hope you can find a Doctor who will listen to you and offer you some help with your pain!

islandgirlculebra

magillilnb said:

Sanysp

Thanks for your response and I hope you keep your Lyphedema in check.  Sounds like you're doing a great job.

My left leg doesn't feel heavy, and my legs are the same size, but I plan to see my PCP, and I'm pretty sure she'll send me for physical therapy. My radiation oncologist said he doesn't think it's from radiation, but that's what I expected him to say. He's sending me for a bone scan, which I don't think will show anything. He thinks it's arthritis, but I don't believe it's that, either. I have been doing some exercises on my own and have noticed that my left leg hamstrings are really tight and hurt when I try to stretch them. I think the issue is somewhere up higher and is referring down my leg. I hope to find out what before too long.

Nancy

Bone Scan

I think it's good you're getting a bone scan.  The bone scan I had done after treatment showed Osteopenia in my hips and my General Physician recommended that I double up on my calcium supplements.  Another wonderful gift radiation leaves us with!

 

magillilnb

Leg pain is worse

I've had an MRI, which showed no compression of the spine, so that was good.  I've seen my colo-rectal surgeon and she gave me Neurotin. It wasn't working at the dose I started on, so she upped it. I am taking 800 mg 3 x a day and my foot feels as if something inside of it is trying to bust out of my skin. I'm in constant pain which is only "relieved" by concentrating on something else, or taking a narcotic at night to sleep. My GP believes this is peripheral neuropathy from cisplatin and taxol, both of which I had. She said it doesn't have to be bilateral. Thank God mine is not, or I would not be able to get around at all. As it is, I am limping. The only shoes that don't hurt are tennis shoes. Everything else feels like it's pushing on the imaginary thing that's trying to get out of my foot. I am seeing a massage therapist, and I feel great when I leave his office, but before long, I'm back to pain and limping. Last night, I had sudden shooting pains going horizontally across the back of my thigh. Did any of you have the kind of experiences I've described? 

mp327

magillilnb said:

Leg pain is worse

I've had an MRI, which showed no compression of the spine, so that was good.  I've seen my colo-rectal surgeon and she gave me Neurotin. It wasn't working at the dose I started on, so she upped it. I am taking 800 mg 3 x a day and my foot feels as if something inside of it is trying to bust out of my skin. I'm in constant pain which is only "relieved" by concentrating on something else, or taking a narcotic at night to sleep. My GP believes this is peripheral neuropathy from cisplatin and taxol, both of which I had. She said it doesn't have to be bilateral. Thank God mine is not, or I would not be able to get around at all. As it is, I am limping. The only shoes that don't hurt are tennis shoes. Everything else feels like it's pushing on the imaginary thing that's trying to get out of my foot. I am seeing a massage therapist, and I feel great when I leave his office, but before long, I'm back to pain and limping. Last night, I had sudden shooting pains going horizontally across the back of my thigh. Did any of you have the kind of experiences I've described? 

L-Glutamine

I would ask your doctor before using L-Glutamine since you are already on the Neurontin, but it could possibly be helpful.  It's a supplement that can be purchased OTC at stores like GNC.  I'm sorry you are experiencing this and hope you can get some relief soon.

magillilnb

mp327 said:

L-Glutamine

I would ask your doctor before using L-Glutamine since you are already on the Neurontin, but it could possibly be helpful.  It's a supplement that can be purchased OTC at stores like GNC.  I'm sorry you are experiencing this and hope you can get some relief soon.

mp3277

I looked it up and it sounds promising. I just called my doctor's office and asked if it's okay for me to take it. I hope she calls back today, but it's not likely. I may call the pharmacy, if I don't hear from her. I read about interactions and it said that glutamine may decrease the effectiveness of drugs give for seizures, including Neurotin. But she gave me Neurotin to help with the nerve pain, so I don't think that is should be an issue for me to take both. But I'll wait to hear what she says.

Thanks for passing this along.

 

mp327

magillilnb said:

mp3277

I looked it up and it sounds promising. I just called my doctor's office and asked if it's okay for me to take it. I hope she calls back today, but it's not likely. I may call the pharmacy, if I don't hear from her. I read about interactions and it said that glutamine may decrease the effectiveness of drugs give for seizures, including Neurotin. But she gave me Neurotin to help with the nerve pain, so I don't think that is should be an issue for me to take both. But I'll wait to hear what she says.

Thanks for passing this along.

 

You're Welcome!

It's worth a try if there's no interference with other meds you are taking.  Let us know if it helps.

Lorikat

Nearly three years out and

Nearly three years out and things are improving.  Still crawl through some side effects, mostly burning feet, but happy.

 

magillilnb

lorikat

I'm so glad you're three years out, but sorry that you still have some annoying side effects. I hope they go away soon and you're trouble-free. After going through all the treatments and sometimes surgeries, we deserve something better than painful and annoying side effects! ;-)

Nancy

 

sandysp

magillilnb said:

lorikat

I'm so glad you're three years out, but sorry that you still have some annoying side effects. I hope they go away soon and you're trouble-free. After going through all the treatments and sometimes surgeries, we deserve something better than painful and annoying side effects! ;-)

Nancy

 

Lymphedema?

The one legged pain thing sounds so familiar! I was dragging my right leg until I got the Lymphedema under control and doing my Lymphedema regimen alleviates most of my leg and back pain along with Hot Yoga. 

Have you seen a Cancer Treatment REhabilitation Specialist? 

It's a long road back, but I don't think you will achieve normalcy until you have given this Lymphedema possibility a thorough check. My Oncologist was not aware of anything but getting rid of the cancer. The side affects are just annoying to a lot of these dedicated Oncologists who want to get rid of cancer. But Lymphedema can kill you too, if it is not properly treated, so find someone who knows something about it. I had one doctor look down at my legs and said "you don't have lymphedema!" I was so shocked as I was in treatment for Lymphedema at the time. A lot of what causes the back pain is the pelvic lymphedema. When I don't do my regimen properly, all the symptoms come roaring back. 

Good luck.