Radiation Side Effects

lemonade said:

Pain
I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

Barbara

Pain in the pelvic region, hip and lower back
Hi Barbara,
I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!

lemonade said:

Pain
I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

Barbara

Pain in the pelvic region, hip and lower back
Hi Barbara,
I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour. Also, I cannot sit down straight for more than 45 minutes as the pain becomes intense in my tail bone and hip area and lower back.

After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!

desertdweller said:

radiation side effects
I also completed chemo/rad in October 2009. Since then I had a colostomy (permanent)May 2010 as the chemo/radiation did not work.The wound abcessed and had a 2nd surgery in Sept 2010 since that time I have home health nurse went on a wound vac and now preparing for hyperberic to try to heal the wound. My lower back and lifting and moving in general is very difficult. From what my Doctors say all of my problems are a result of radiation..if I had to do it over I would never have had the radiation treatment, it did much more damage than good. My Doctors never advised on these severe side effects. My life has changed drastically over the past 11 months and feel like it will never improve. I live off of Oxycodone Oxycontin and Lyrica without which I would not be able to move. I am hoping that this wound, which needless to say, is a pain in the a--!!literally. In addition to the anal cancer I have very severe psoriasis which is also contributing to my pain levels. Life is not fun at the present.

Psoriasis with colostomy
I also have Psoriasis and a colostomy (though currently labeled temporary.)

My psoriasis has added complications, trying to maintain a waffer over my stoma while having an allergic reaction to adhesives and then having the blisters turn into psoriasis has made life with a colostomy interesting. (to say the least)

My elbows are bad (mostly because I pretty much lived with supporting my weight on them and still do to a large extent. Just can't seem to break the habit now.)

I'm currently going through a break out phase with my psoriasis so my arse and hips and legs are breaking out, the area under the waffer is all broken out and my hands are breaking out. (I don't usually have breakouts on my hands so I get worried when it hits my hands/palms/soles of my feet.) I'm hoping the break out won't get too severe at this time. (I've got enough on my plate.)

Side FX
Changed my life forever. And not in the best of ways. Yes I'm still disease free (since tx ended, 01/06); but sex for me is a thing of the past... Also, had a *real bad* case of radiation proctitis for a good 5 years or so afterward. Contributed to many, many embarrassing & downright awful situations/experiences. (And forced my resignation from a very promising professional position.) It's finally cleared up now, (I think!) for the most part; but I still occasionally struggle with bowel control & elimination issues. Yes, I do praise God, that He's seen fit to spare my life this way -- through that course of treatment, etc -- from that dread disease (in probably the worst place imaginable to have it - IMHO!) But, gosh, I wish I could give my wife a real good... Just wasn't in His Plan, for my life after age 45 I guess. Overall, I have to say it's great (*WONDERFUL!*) to still be here, & to be disease-free... But I ain't the man I used to be!

lemonade said:

Pain
I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

Barbara

Pain after Chemo/Radiation
Barbara,
It has been a year since you posted this message and I hope that your pain is now gone; however if you are still having pain and thinking about a support group I would be happy to share experiences with you. I live in your area and have also experienced the same painful side effects.

lemonade said:

Pain
I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

Barbara

wow
hello Barbara,
I am 2.5 yrs from conclusion of radiation/chemo. BLAH BLAH . I too am grateful no joke to be alive. Farah had the same cancer as I did and she died 2 years from diag. Farrah did not take the conventional treatment that I and it appears so did most of us. I guess that I am a survivor but is that before 5 years or after? Jeez I am so confused about this point. Your comment about everyone else around you feels all is healed and its time to move on . I can so relate to this. Its like all the world says ok you are treated therefore you are done with being sick. I feel like I am alone in my world. I will have surgery to repair some of the damage from the radiation and continue to survive. Blessings to all.

BC331 said:

Running and weight training to help with stiffness
Hello MP327, I am new to this sight and have just been diagnosed with anal cancer. Just preparing myself for treatment and want to be as proactive as possible. Im wondering if you also ran during your treatments? Were you actually able to? Im thinking of also taking up Yoga
as well.
Thanks for any feed back you have on exercise during the 6 weeks of treatment.

Hi BC331--
I'm very sorry to hear of your recent diagnosis, but I'm happy you have found us on this site and I hope we can help you get through this.

As for exercise during treatment, mine was curtailed due to fatigue, diarrhea and weakness. I had to stop running. However, I have a treadmill and tried to walk on days when I felt up to it. I think any exercise you can get during treatment is beneficial. My best advice is to push yourself only as far as is doable and no further during that time. Your body will be letting you know what it can and can't do, so listen to it. You will need plenty of rest and fluids. Also, I recommend getting protein with each meal or snack. Eating became difficult for me towards the end of treatment, as I had absolutely no appetite. Protein drinks were helpful, but didn't taste very good to me then!

I would definitely try to get in some walking whenever you can. Yoga will help also, keeping you flexible. You may have read on this site already that a common post-treatment side effect is hip pain/stiffness and reduced range of motion. If you can keep moving during treatment, it should help you.

I wish you all the best and hope you'll keep us posted on how things go. I hope you get started with your treatment soon so you can get on the road to recovery!

Hip Pain from Radiation

I am a 7 1/2 year survivor of Rhabdomyosarcoma. I had pelvic radiation 25x plus 3 rounds of internal radiation thru vagina, as well as 12 chemotherapy rounds.  I've been "cancer free" for 6 1/2years officially.  The pain started about 4 years ago in my left hip.  My doctor told me it was bursitis and gave me shots of cordisone.  Right now the pain is horrific.  It's been pretty bad for the past couple of months and I have not gone back to my rhumatologist because I don't think it is bursitis ...I think it is from the radiation and was almost relieved to read your post.  I know your frustration and I literally 'feel' your pain.  I find that heat helps if not just to loosen it up ...the warmth feels good. I try to go in the hot tub ....get massages...etc. but sometimes nothing helps.  I take way too many advils but it does seem to relieve some of the pain...even if it is just taking the edge off. If you find anything that helps...please post it. I will do the same.  Ellie

Hip pain

Hey there,

 

I am so glad to have found this site., even if I am from the UK... So, Hi, I'm Rachel and I'm 28. I had cancer in my hip when I was 10. The day before my biopsy in 1994, the surgeon came to examine me, and lying on the bed I could get my left leg to raise at a 90 degree angle, but my right leg would only go 15 degrees up. I had a years worth of chemo on a three weekly cycle and 30 sessions of radio therapy. The R/T session were for three minutes a day on weekdays, zapping for 60 seconds at a time from three different angles.

In the few years after chemo, I was incredibly stiff. The kind of stiff, where you're arguing with your Physical Education teacher that you can't even put your socks on with ease, let alone trying to tackle the hurdles!

In 2002, when I became sexually active, I'd find that I ended up in immense amounts of pain if I tried any amount of adult activity. IN 2003, it became too much and I went to the doctors who reffered me to physio. I had no stamnia when it came to bedroom activities, and if I became within about (what I now know to be) 1-5 minutes of an orgasm, the pain in my hips/back/legs was so unbearbale we'd have to stop. The pain was cramp. But the tensing up would leave me in utter agony, and I did not fully ejnoy sex until a few years ago... The physio helped, but got no where close to getting me back to 'normal'

I went to uni at the end of 2003, and the concept of doing daily physio just did not fit in with the uni life. Nearing the end of uni, I started sffering more and more pains. not just one type of pain, but several.

By 2006/07 I was in constant agony, and it took for me to go back to my childhood chemo speciliast to write a letter to my (new) doctor suggesting physio would be good. By them summer of 2007 (aged 23) I could not put socks on by myself, my boyfriend had to do it. or I'd have to sit on the bed and attempt it for <15 mins. Like a drunk person trying to find the keyhole of a door...

I got referred to the phsio department again, who asked me to keep a diary of when I hurt. But I didnt produce one as I'd have spent all day, every day writing in it. I went for weekly sessions at the hospital for about 6 months and it helped amazingly. Unfortunately, the sessions stopped because other people needed the sessions / there isn't that much funding on the NHS / there was nothing else they could do for me. The six months of physio had stopped the constant agony, and given me much more flexibility, but then I was left to continue the 30-60 minutes of physio every day, at home, by myself. And this was just to keep the pain at bay.

I persisted. And persisted. But the last two years have been getting progressively worse and worse.

As mentioned, I have more than one type of pain; If i sit too long, IE more than half an hour, a toothache style pain starts in my hips and works its way down my leg and up my back, The longer I sit, the longer it takes to be able to walk like a 'normal' person. One hour of sitting, ages me about a decade. And each decade takes a minute of walking to wear off. So an hour of sittinh takes one minute of me to be walking to feel my normal self again. There's then the pain that feels like being punched in the bum every time you take a step upstairs. Then there's the pain that feel like someone is very slowly pushing an extremely sharp pin in the side of my hips when I'm sat down, and then there's the one that's caused me the most grief over the past two years.

When I stand up from a sitting position, it feels like I've banged my funny bone, but in my groin. Or that's how it was two years ago. That sensation would hit me once every six months and last for a second. It'd been that was since the late 90s. But the sensation became more frequent, like once every four months, then three, then one, then once a week, and the lenght of pain went up from a split second, to a whole second, then two, then three, then ten. And each time the frequency increased, the pain increased. To begin with, it was just a sensation, then it turned into pain, then into agony. It's been for the last year, that the pain has made me yelp when it sets in. The pain/sensation was just in my groin to begin with. half way between the inside of my leg and the outside of me hip. But gradually, over time the pain has spread. Sometimes it just shoots to the outside of my knee, other times in continues down from there, to the inside of my ankle. When the pain hits, and I stant up, it takes me from between one second and ten seconds to be able to start walking. Once I get going, I'm fine. But as soon as I stop, or sit down, I'm screwed.

 

The last six months to a year, I've really noticed a step up in the trauma. It's affecting my sleep. If I go to roll over, it wakes me up. If my leg twtictches it can wake me up. During the last three years, I've moved a few times, each time bring a whole new way of life. My first move saw my doing 30 mis of physio every day and a five mile cycle to work and back 4 times a week. The second move saw me doing 15 mins of physio on weekdays plus 15 mins of cycles along with an hour of physio each day at the weekend, I then lost my job and was doing 3 hours of physio and yoga each day, just to get me to 'base level'. I then moved again and was doing an hours worth of physio each morning and whatever yoga I could fit in. I must mention, that'd I've always had jobs where I'm on my feet and moving about all day, such as working in restauarants or coffee shops.

But as time goes on, the pain gets worse. it gets more frequent, the pain level goes up and my flexibility goes down. Like many other people, I wasn't warned of the long term side effects, and therefore not able to prepare for them, and not combat them when they arrive. As I've said, I'm 28. 28, and feel most mornings when I wake up like I'm 88. If I meet anyone above the age of 50 who complains with aches and pain, and I say I know how they feel, I get totally dismissed because someone of 28, who still gets asked for ID on a regular basis, can't possibly wake up feeling older than their years!

When I made my last move and came back to my home town, I signed up with the doctors and got an immediate transferral to the local physio department. I go once a month and just get my hip manipulated, which helps for a day or two with stiffness, but not the pain. I've also been taking Tramadol for the last year, but about six months ago they started making me really itchy, sweat so much you could see it trickle off of me, and also give me insane insomnia, as well as turning me into a complete space cadet!  So then I got Codine, which makes me constpated, therefore meaning I have to stratigically plan my meals. So currently, if the pain is really bad I start with Codine, but then go with Tramadol, but then I can't sleep, and the next day I go with Codine, but it's not as good as Tramadol and I can;t sleep because if I roll over the pain wakes me, then the next day I go with Tramadol, but I haven't emptied my bowels for a few days, and when I finally do, I spend most of the day on the toilet. Like four or five separate visits, equating to each day since I took codine. But each time, getting looser and looser and looser, until I'm just walking about and can feel a wetness between my cheeks, and then the rest of the day is spent visiting the toilet every 15 minutes while just a trickle of wetness comes out. But then, after this day, I clearly don't want to take any pain killers for a while due to their side effects, and then the shooting pain from my groin starts up again and I put up with it for a week, still continuing to do physio, and then the pain gets so bad I resort to pills on the highest dose.

And that's me now. Aged 28, 19 years after treatment, All the doctors suggest is physio. But three hours a day just isn't feesible. I'm abolsutely bored to tears with it. It brings me bouts of agony on a daily basis, where it feels like I've broken my groin, and its getting worse and worse. I won't sugar coat it for you. It's horrendous, and I should have another 50 years of life in me. I honestly do not know how I will cope. I'm barely coping now. 

Yesterday I got given a number for someone who does accupuncture, so I'll be sure to follow up that lead after reading numerous posts on this forum. I just want to try and rid me of this pain and stiffness,

I have no words of wisdom for you, only the cold hard truth that physio and excercize help, but no one can do it for you other than you. It's only ever going to get harder and you'll have to put in more work! But count yourselves lucky, most of the post I've read on this site have been from people who are around 50 years plus, and had treatment within the last five years, I've already been dealing with this for two thirds of my entire life, and I'm potentially only one third of the way through it. It sucks, it really really sucks, and until I found this website I had no idea that anyone else was dealing with the same problems as me. It's refreshing and saddening that people are in the same boat as me!

 

Any help or advice would be greatly appreciated!

 

Much love to you all

 

RacheyB

 

 

Radiation Side Effects

Hello,

I was diagnosed with anal cancer in August 2011, immediately followed by six weeks of radiation, and two rounds of chemotherapy. So it has been 2.25 years since the end of treatment. I had been an avid hiker/backpacker having climbed a 14-mile, 3,700 ft.- vertical elevation trail the week before my doctor's appointment. I only say this in the framework that when I finished my treatment I was so anxious to regain my previous capability.  I had excellent doctors I believe, but besides advising the use of vaginal dialators/estrogen cream beginning a few months after the end of treatment, I was not warned about the radiation fibrosis that would occur in the skeletal muscle (quads, hamstrings, well, everything from the waist on down and the knees on up).

I was sidelined a year ago with meniscus (knee) surgery caused by a relatively simple, easy hike.  It has taken a year to recover from that. Now that my knee is completely healed, I am discouraged to discover that I hurt all the time; hamstrings, hips, quads, etc. Excersize helps; takes a LONG time to warm up; stretching helps (so much loss of flexibility though), and it seems to be gradually getting worse. I completely agree with the "use it or lose it" advice. The longer you hold still, the greater you sieze up. After reading so many of these posts I see that this is a situation I'll have for the rest of my life.  I found a PubMed abstract at the following: http://www.ncbi.nlm.nih.gov/pubmed/22108231 that plainly describes our condition.  Furthermore, the Journal of Clinical Onclogy has a 2005 article discussing the potential reversibility of this condition, using Vitamin E and pentoxitylline. I will be asking my rad onc doc about this.  I haven't seen him in ages, but it seems to be time.

Bottom line, the fibrosis seems to be getting worse over time; making movement and stretching a top priority forever.

Hang in there.