Hi this will be long winded. But I am seriously looking for answers and unfortunately I am not getting anywhere with Dr's..( my family Dr is good but the rest of them.......can't say much) I went thru chemo/ Radiation and brachytherapy for cervical cancer. Went through all of that like a champ. No hair loss ( unless you count the 100 thousand dollar brazillian down yonder) Was not sick during chemo reatments. The next day after first chemo treatment radiation nurses were shocked I walked in all normal like. I gained 10 pounds and had no problem eating. Radiation I suffered no burning flesh, no redness , no irritation. Other than consipation/ some diarrhea I had no problems with any of it. ( Sorry I'm rather blunt in the way I talk because my dark humor is what I do believe got me through it) Brachytherapy I don't mind telling you I cried, screamed like a little bitch. It wasn't pleasant having a midevil torture device inserted into my pleasure palace turning it into a little shop of horrors. Now to the problem....
I started noticing lower back pain that would shoot pain into both hips with servere excutiating pain/ burning sensations. At this point I was still walking relatively like i once did but it wasn't pleasant but at this point hadn't taken my life away as it is now. Around last weekend of December 2018 ( Before anyone knew about Covid19) It's suspected I had the Covid19. ( post treatment 9 months) It was severe and I pretty much took to my bed from being weak/ tired from January till around Mid April 2019. ( My family Dr knows if I walk into her office with my hands/face covered its bad enough I don't want them to get it) I started to regain my strength and noticed the lower back pain stopped. But the pain/ burning in my hips were VERY intense and then started to spread pain to the front groin muscle. I could no longer walk long distances, As this progressed the pain in my hips/groin only got more intense as well as a new symptom. It was now affecting my back calf muscles in both legs.It's so bad now that my muscles literally feel like they are shredding as I walk. I now have leg weakness.I literally cannot walk to the end of my driveway which is about 2.5 car lengths to take out my trash without pain. I barely leave my house. I do manage dinner with my husband because it's a short walk to my car and when i sit it helps alleviate the pain. Then another short walk into a place to eat. Repeat process to come home. I now have to sit to actually sweep my carpets and do all my chores.I can no longer go down steps or even up them. I can no longer lift items because it affects my hips. It's now 2021. During the course of the past year. I also developed what felt like severe flu aches and pains from the neck down. I have now THANKFULLY been diagnoised with fibermalgia and it's been treated and no more pains from that. I am in physical therapy for the hips/legs. Don't get me wrong when I say this... I'm happy to be alive. I'm happy I went into remission.But I kept telling Dr's I was having issues. and it went on deaf ears. I finally looked at my family Dr and was like "If I had known then that I would suffer this bad now. I would have let it run its course because this isn't any quality of life. Doc, the chemo and radiation was a breeze compared to this" That's when they put me in physical therapy.
So my question to ANYONE. Have you experienced this. If so what did you do. How were you treated for it. Because I honestly do not think I can handle this much more. Yes I am depressed. No I am not suicidal. But I told my husband already that if I get diagnoised again. It's running its course because I went through all of that. Fought like hell to be a shell of a human being,
Oh I am so sorry you feel this way, but have you ever heard about RILP? Radiation induced lumbar plexopathy? Your problems sound exactly like this condition.
I have seen more ladies here suffering from the same thing you are describing.
Hiya I have struggled with pains all over especially my hips and legs since I've had treatment 5 years ago the doc just gave me pain killers and sent me to the pain clinic and they were sending me to a group to talk about pain which I replied to talk about pain how is that going to help they couldn't answer me I started to go swimming most days and was good then I went back to work 4 years later now I'm 5 years and I'm still sore some days I stay in bed till its time to go to work at 130 as I'm so sore but needs must x
I too am experiencing hip pain. I'm a year and a half out. It feels like the same hip pain that I had when first diagnosed. My quality of life is shit. My feet hurt all the time which makes going for walks unbearable because I am left lying on the couch with ice packs on them. They never tell you what to expect afterwards and I feel like my body is 90 and my brain is 20. I will never be the same as I was and some days I just cry out of frustration. But we are here, alive, to bitch about our new normal.
No I never heard of this. But you can sure bet I am printing it up to take to my Dr. all I know is something has to give before I totally cannot walk at all..I appreciate your response and thank you so much
I know exactly what you are saying. I'm 53 and my husband is 14 years younger than me. It's not only taken a toll on me but my husband as well. I'm always in pain. you are right it is a new normal and its not a good normal at all.I notice my feet getting really hot and achy. I don't wear shoes anymore but a loose slipper with a sole. It's helped a lot.At night even during the winter months I have a fan blowing on my bare feet. That also helps.I tell my husband all the time. I'm 53. Emotionally i feel like a 30 year old but my body keeps telling me I am way older than my age. The good thing to come out of me posting this is I took the one suggestion to my Dr today and she was like. Yeah this sounds like it and she's doing some research on i. Try a fan on your feet and wearing a slipper with a sole instead of shoes.. See if that helps a little bit.I know it did me.
I have not experienced anything like what you are going through, but it does sound like nerve damage more than anything else. Have you tried acupuncture? I know it works for nerve damage.
I had painful pelvic insufficiency fractures which eventually crumbled to allow the joint to impact - agony. I had queried the pain for a while and eventually a scan showed the problem ( NB often not shown on an X-ray - read the Macmillan booklet) Surgery sorted the problem though walking far is not easy. Keep going to Dr and ask for referrals.
Sorry that you’ve had such a rough time with pelvic fractures. What kind of scan did you have to show your fractures? Where were your fractures. Sorry for all the questions - I’ve recently become more concerned about my bone health.
I had a CT scan November last year which showed I had compression fractures to 2 of my lumbar vertebrae. After that I had a DEXA scan which showed I have low bone density in my hip and spine; I’m now on medication for osteoporosis.
I had both mri and ct scans. Insufficiency fractures can heal by themselves but after the operation to repair the pelvic girdle I was told that parts are like marble and parts like honeycomb and it was hard to find places to put the screws. That side is ok now
I find it hard to get people ( doctors) to believe the pain I was in till the whole left side crumbled.
This is really interesting to hear as I have been having pain in my hips and in my left leg and thought it was completely unrelated to the cancer and treatment. I did start having pains before I had the treatment though and have now been told it could be because of the cancer or pregnancy ( found out I had cancer two months after giving birth) . Just been referred to a physio for some exercises. I’m now worried though that the cancer has spread and is causing the pain!!
Hi! I’m 3 years in remission. I also had chemo, radio and one session of brachy. The 2nd session was awful, due to the damage of my bladder and bowel they had to stop. So I was given 2 weeks extra external radiotherapy to make up for it. My lower back and my hips are agony. The physio said it was sciatica but it’s not. I told them it’s not. I took all the treatments, I did as I was asked. I feel worse now than I did then. It’s depressing. Like yourself, I’m thankful to be alive and cancer free, but I’ve lost myself, my job as I’m not able for it anymore, socialising is difficult due to the pain. Im awaiting another MRI scan to look at my lower back, hips and pelvis, as I complained about the pain to my oncologist 2 weeks ago. They keep saying it will get better but it’s not. I had a big operation for vaginal stenosis, which has returned, so I will need it again. It’s been put on hold due to covid. My bowel & bladder were bleeding constantly and I needed lots of blood transfusions. So I had my bowel cotorised. It hasn’t bled since but I have an urgency where I can’t wait. I get no notice it’s coming until suddenly I have to go straight away. My bladder has stopped bleeding, but I get radiation cystitis all the time.
People always say, ‘come on you got through cancer’ but they don’t understand that it’s left me with a lot of damage. I totally understand what you are feeling and what you are saying.
Keep pushing the gp, keep telling them. Don’t let them fob you off.
Just to mention, in case anyone isn’t already aware, the Pelvic Radiation Disease Association (PRDA) offer good support and information for the various long term side effects of radiotherapy to the pelvis: https://www.prda.org.uk/
Also the PRDA have a forum on Health Unlocked: https://healthunlocked.com/
Well here is a update to my original post. None of the pain or symptoms I had stopped until last Wednesday. Being a diabetic. I ended up with gangrene in my big toe From lack of oxygen to my legs. ( now the original pain started exactly as soon as radiation was completed to where i couldn’t walk long distance and the pain in my legs were bad) Fast forward 3 years to the gangrene. My dr made me go through test for blood flow, went through cat scans and multiple other tests. My lower major arteries were almost 100 % blocked. I went through surgery to where they took a vein from my arm and also put in stints in my lower groin area. As soon as I woke up from surgery and took a walk down the hospital hall. I noticed a difference IMMEDIATELY. They fixed the right leg and walking all that pain was GONE. But I still felt it in the left leg. But had none of the previous symptoms in my right leg ( hopeful to get my legs back at this point. I have to go to surgery again in about 6 weeks to fix the left leg. I asked my vascular dr if the radiation could damage the major arteries and he said yes. I explained to him it started as soon as cancer treatments were over. If you are experiencing pain like I was. Get yourself an appointment with a vascular dr immediately. I spent 3 years suffering.
I updated my original post. I spent 3 years in agony. Recently i ended up with gangrene in my right big toe because I am a diabetic and there was very little blood flow/ circulation in my legs. They weren’t even getting a strong pulse in either of my feet. I went through cat scans and numerous other test. I had surgery last week where they took a vein from my arm and placed a stint in my lower right groin area. As soon as I woke up from surgery and took a stroll through the hospital halls. The pain in my right leg was gone. the pain in my left leg increased. I get the other leg fixed in about 6 weeks. Go to a foot dr and have them check to see if they get a good pulse in your feet. If not go to a vascular dr. All my pain was due to circulation issues in my legs. My vascular surgeon said YES chemo and radiation can be a factor. I was almost 100 blocked. Seriously check the blow flow to your legs
my pain ended in my right leg. I had almost 100 blockage in my lower pelvic region which cause blood flow loss to my legs and feet. I had surgery about 3 weeks ago to restore blood flow to my right leg. Hip pain, leg pain gone and im am able to walk really good with my right leg. Cannot wait to get the left leg done. You might have blockages. It sounds weird but who would have thought it was a blood flow issue. Doesn’t hurt to check in with a vascular dr and have them run a cat scan to see if you had blockages. They ran mine with contrast. All they use to do was give me pain meds. It’s the first time I’ve had real hope getting my legs back to walk, work. I hope you get answers.
xx
