Severe bone and Joint pain chronic after long term chemotherapy

Your willpower is impressive. Unfortunately, there are people suffering in silence. Chemotherapy and radiation are hard on the bones and joints. Chem is famous for causing bone loss. I wonder if you have been tested for osteoporosis. You site many possible sources of pain. I can't tell from your post if you had any hardware placed , but he MRI should tell a tale. If not you need a CT. You might benefit from a thorough exam at a university pain clinic. Is you doctor waiting for a single MRI of your neck? Because I suspect you need a cervical, thoracic and lumbar MRI. Your laminectomy may have created instability in the neck which can give rise to fresh osteophytes. Those sharp little encroachment on exiting nerves that can be removed (again). There are many palliative procedures that could bring back your quality of life.
One of the things I noticed in your description is that you don't describe the pain or specifically locate it in regard to movement. I suspect you never complain. There is likely a lot of help for you, but it will be a part time job to get it. You clearly have the strength. Best Luck

@gently
Thank you so much for your reply and thoughts.
When I would have Chemo for an 8 hour day, mind you this was every other week for over a year and several months, I was given a terminal dx and that still looms over my head,, as I was NOT supposed to live much longer after the cancer was found in the colon. It is a very rare cancer.. Not colon cancer , lung cancer in the colon,. so many ignorant Drs.. do not believe that is possible and I should not be here., but I am and I keep finding these things I handle myself ,, I tell the Drs things I need... so my Dr . pushed me with the chemo until one day I just stopped... The chemo would go straight to my bones, mostly my legs and shoulders, I would have 3 heating pads going at the same time.. cocktails of pain and nerve meds that really didn;t help much,.. I just did what I had to do and knew by the end of the week I would have a day or 2 of feeling better only to do it all over again... Over the years since I stopped I have had many more surgeries, each one taking a toll ,. so many scans, cts, petscans, Mri's so much radiation,.,, I did have cervical surgery in 2020 I think,, 3 level disk replacement,, I started there before the back as all these Drs wanted to put poles and cages etc in my spine,, surgeries would be 10 hours with a 6 month re coup time. I cant take that kind of time anymore , as I said I run 2 full time businesses with no back up.. I let my other businesses go when I first got the cancer ,I am not going down that road again,. My lower back is excruciating.. Mostly on the right side.., the sciatica at times becomes so bad I grab my legs and stretch and massage... When I had the laminectomy he also put some nuts and bolts in me so I really do not know what is going on right now.. s=hence the new MRI.. I am waiting to have... Only one open MRI in this city so I wait,, I also am waiting on a CT of the Abdominal wall as they suspect I have a flank or lumbar hernia that goes around my waist to the spine.. I am very tall and thin, so when all of a sudden I develop this bulge on my waist and it goes around to the back .. Which is very large and prominent.. and apparently happens with people who have had lumbar surgery,, I can press the center and feel it in the middle of my abdomen.. I also have several hernias , painful ones in my abdomen that happens when the mesh that was put in to keep my intestines together after colon surgery comes apart it causes the hernia. I have already one replaced and it was horrific.. I am not sure if this Abdominal one is an extension of the others?? I am my own advocate and sadly I find my own issues and tell the Drs what I need.. medical is not good with the exception of a few good surgeons I have.. My pain is everywhere, my wrists, fingers, shoulders, the neck now is at night and I still wear the brace , but during the day I am ok.. NOT OK with the spine... I have to squat as much as I can rather than bend so I think one of my knees is on its way out... I thought perhaps I surely had rheumatoid Arthritis Dr took test ..NO , I did have orders for a bone density scan I forgot about .. last time years ago it was pre osteoporosis.. Yet i asked my Dr about the bone shots to prevent bone damage I recall my Mother getting at my age and went way over her head... I felt a lot better going through chemo than I do 8 years or so later... It is a full time full time job having to keep up with Drs, and scans and I get injections every where.,. as well my feet,, those out of now where developed issues.. and my teeth that I spent a lot of money on with veneers and now I have to have gum surgery , and I have lost otherwise healthy teeth...thanks chemo..., no one tells us this will happen,.. Not that it would have made a difference.. My Dr pushed me through the chemo to kill the cancer. i am considered a "miracle" in the fact that I am still here.. I still look good and take care of myself in that respect , but it is a shell.. and I tell Drs please do not judge me by how I look.. LISTEN to me...
To further my stress and lack of time to address myself..... My mother became ill almost 2 years ago... her care, even though my Dad is still here with her, and I have two brothers one with a wife here... everything was dumped on me for her care ... It has literally sucked the life out of me.. I saved my mother. She is home now, she is healthy again and nothing wrong with her other than she is lazy. I have 0 tolerance for that, I know what I have done to live.. I expect her to do something, anything, try her hardest.. get out of that bed and walk.... it is what my dad wanted her back home and not in a home... I have now done my best to set boundaries.. I have never seen so much selfishness within a family and I do not know if they would all function without me,.. Now that they are elderly I can not run away like I wanted to for years,, i want better health care and a better quality of life. I want the life I used to have,. it is gone and I am having a very hard time dealing with it. Thank you for your help again,. have a blessed day 🙂

I can't begin to tell you how impressed I am with your courage. Courage and strength. And with no help from family only more needs to be handled. And then you end with a smiling face. I was thinking about the injections and nucleoplasty when I responded to your post. But I was also thinking about Forteo. Another drug but a biologic analog for parathyroid hormone. Some report a reduction of pain as it fill the spaces in the bones and the joints.
by stimulating osteoblasts and chondrocytes. I've been taking it since April and just don't ache as much.
You mught alos check out chirpractics. After the first visit the treatment is quick. I'm usually out before the half hour. You can avoid thrust adjustment, definitely in the neck, but I'm hoping the MRI reveals a simple fix. Sometimes the hardware doesn't hold position.
You've gotten good at wrestling with physicians. I hope you consider seeing multiples because there is so much to know, And new information all the time.
I had minor (compared to yours) bout with colorectal cancer and had to crisscross the states to find an oncologist willing to treat me without chemotherapy. I'm five years clear, but have time, perhaps, to realize the the anti-chemo stance was a mistake.
I suspect that you don't have time for massage, but it can be very helpful.
Yeah, you can't let hernias go because they just get bigger.
I hope for some unexpected escapes in your future.

@gently
Good morning.. I am curious as to how you handled and treated your bout with cancer?? You say you are 5 years clear but you are questioning your decision to not have chemo?? Are you ok still?? I certainly hope so.
What is this drug forteo? I have not heard of it, of course, as I mentioned I generally research things then tell my DR. I have been through several Oncologists for various reasons,, the one I have now I do not like. I missed my appt, on purpose a month ago, I felt I was having my primary order all of my scans and I read my own blood work why do I need this woman who does nothing. I have looked for another Oncologist but no one else here. This city is just awful. I had called Mayo in Scottsdale last year and used my brothers condo address as mine so I would be a resident?? They put me on a wait list,. I was willing to drive there or fly as needed for better care,, It is only an hour flight.. But I have not had any callls. If my cancer was in full blown mets state or active I would land on their doorstep and they would take me,. They are the pioneers of cutting edge cancer care founded on not turning patients away . Well like any place else they are a business..

I did join MAssage Envy, had one massage so far,, it was quite painful as I said Deep tissue. They had one lic. medical masseuse as I would not let anyone else touch me..I have very thin skin, especially my hands and arms all I have to do is touch something and it will itch and bruise terribly,, I told her my hands were painful. she worked on them.. they were a mess of bruises.. I have not made time for another yet, perhaps later this week for some relief,, When I saw my neurosurgeon about my spine and getting the new MRI asked him about my neck,, he did rec. a chiropractor.. Interesting you do as well. I am sort of afraid , which is odd as I don't fear much,.. so I didnt pursue it, Perhaps I will see one,.

Where do you live?? that you had to go else where to get a more holistic approach to cancer treatments??? I still would like to know what you did.. years ago I lived in San Diego and was a Real Estate agent. I started very young,, 22 .. I had a very lovely client who called me to list her condo.. she had breast cancer. I knew no one and nothing about cancer.., I listed her condo. She said she was going to Mexico for treatments,, sadly she never came back.. her brother then contacted me for the sale of her condo.. I cant help but wonder why she did that when we were in the area of the top medical treatment centers,, Scripps Institute, etc Obviously much more available now.. My friends all wanted me to come back for care.. i was sort of stuck in a hospital here after the lung biopsy my lung collapsed so I was stuck for a good week for that surgery plus the Dr. on staff did every test possible on me to check for mets of the lung cancer but neglected the abdomen, When I was released prior to the actual lung surgery , I had a pet scan that showed the high uptake in the abdomen.. and suggested follow up with CT,, no one paid any attention
so I went a good 6 months under the care of a quack, slowly dying while every month I would see him in his office , never once blood work, weight , vitals.. I was bleeding internally but didnlt know it,, every month he would say he wasnt sure what to do with me, as far as chemo as my lung was removed that had the cancer,, I was so sick I didnlt know what to do nor did my parents.. my primary paid no attention to the fact that I was now 25 lbs less and sick,,, Finally my lung surgeon saw me, told me to get away from this guy and see this other DR,, I did, and that is when she did blood work that day, called me back, and stuck me in the hospital for 2 days to get blood, I was running on empty.. I know it all now. but when you have no knowledge and some dim wit Dr that is supposed to know tells you you look great , you had a hard surgery, my answer was no I didn't , I had a good surgery ,, I was up the next day, putting on eye liner and shaving my legs,, plus walking with the walker and my IV stand.. My surgeon saw me and asked what I was doing, I said I am doing what I do,.... after that first day is when the pain of the surgery hit me,, but i was walking ten time around the block until I couldn't anymore.. Suing that Dr would have been so exhausting and time consuming,, so I went after his license which I learned he had revoked years earlier but got back, he had a very sordid past and kicked out of many states,, and lands here.... I was successful in having his license revoked and not up for any renewals , getting it back,,, I opened the door for others to sue him.. which they did.. no amount of money if I sued would justify what he did to me, however, knowing I ruined his life, he was in his early 70's and his practice , holds much greater justice for me. he will never hurt of kill anyone else,. . The whole thing was a bit of a black mark on me with other oncologists not wanting to take me on as a patient for fear if they screwed up I would go after them.. well if you dont do wrong you do not need to fear..
I best end this here or one story will keep going into another... have a Blessed and pain less day!! Jacquie

Jacquie,
I read your post with quiet fascination wishing that one story would keep going into another. Your elegance of thought almost a betrayal of the physical brutality of your experience.

I'd done a bit of research for friends and knew the treatment and the oncologist I wanted. The diagnosing doctor didn't agree and refused to send results, the radiation oncologist wouldn't schedule without my scheduling with the medical oncologist. The one secretary wouldn't communicate with the other secretary.
I finally fly from California to University of Pennyslvania and they refuse to treat me without chemotherapy. The two oncologist seemed to have a strange relationship. I couldn't get answers from the medical oncologist, she kept accusing me of being like Farah Fawcett afraid of losing my hair. She tried to assure me that I wouldn't lose my hair before scheduling me for a wig fitting.
But I was never considering chemotherapy. I was sure Proton Radiation would cure my cancer. There were 28 proton centers in the US. I would have gone to all of them.
At Scripps Proton Center Dr. Giap agreed to treat me without chemo, though every time I saw him he tell me that I should. He would show me how easy it would be with a funny gesture of tossing his hand toward his mouth as though he had a pill in it. His colleagues told me that they would not have agreed to treat
me without chemo.
Every single doctor I met told me that I was doing the wrong thing. Some fellows that I hadn't met sneaked into my room and told me that I could die without chemo.
They all wanted to help me survive.
At Scripps I was offered a new test for the genetics of the tumor itself. Except someone forgot to send it in. I didn't know until after my treatment was finished that none of the chemotherapeutic agents they offered me would have affected the tumor.

Radiation can have rough side effect, too. though.
Forteo is an osteoporosis drug. It stimulates bone building cells as well as cartilage chondrocytes, Weakening bones can be painful long before they fracture. Chemotherapy can weaking both bone and cartilage.

Hello again
You are quite the determined patient , you remind me of me!!!! You have done your research , you followed through with your plan and sought the Drs that would listen to you, even against all odds..
I do have a question., did you have any surgery ?? If not why? Were they afraid to disrupt the structure for fear of mets,.
I am assuming you had the radiation? And in the end you won!! having chemo that was not available for your type of tumor could have killed you.. I shake my head had the stupidity of these Drs we once or I once held with the utmost of esteem I now look at as someone who manage to graduate Med school; and put DR, in front of their names.. With the exception of some incredibly intelligent ones. I can tell you that yes.. my dad had prostate in his 60's , of course the Drs downplayed the prostate back then as no big deal.. I, much younger at that time did not understand much about , quite busy on my own,. my Mom was forced to be a WIFE!!! and take care of him. He had 8 weeks of it, 5 days a week. sched, at the end of the day so he could come home and rest as he would be wiped out.. At that time he and I were super busy building homes, I was selling them and running the landscape co etc. so he didn;t need to worry about anything . I took over,. years later , after my cancer journey,, he was always complaining but not a whiner , like my Mother, about the pain in his bones, and joints, Our primary and other Drs dismissed this as "old age".. I know my Dad.. it had been going on for 3 years, and it was 2016. I said come with me to my Oncologist and let her run some tests., she was very good,. after a few months of extensive testing,, between pathology here and working with MD Anderson,, consensus was stage 4 mets non hodgekins lymphoma of the bone marrow.. 80% infiltrated.. he had to have had it for a good 3 years., had I not taken him he would not still be here.. untreated.. he did do 7 rounds of chemo but it was enough to halt the cancer growing. no bone marrow transplants.. he told me he could not do anymore or he felt he would die.. at that time in 2016 my Mom was already wallowing about her knee pains and surgery and I went to every one of his appts, chemo etc.... she just was her usual selfish self....so now having given up so much of my life the past 2 years caring for her for something she caused and because of that it caused xyz,, in these rehab places. I can not tell you the amount of anger I have for her,. although I love her, I feel guilty saying this , but I dont have any sympathy left,, I got her to live through covid then mersa, and 2 surgeries.. she was healthy and should have come home to my dad 7 months ago,,, It has been a horrible experience.. she does nothing to get out of bed and get moving... everytime I see her as I got her home... with all the care she can get,,,,5 weeks now.. a hospital bed ooooo, wheel chair, she still will not get in the chair on her own and sit in the living room... caretakers do help my dad cook..I bring up food I pick up .. She has PT and OT as well,, but that stuff runs out,.. these women tell me they dont want to hurt their backs getting her out of bed.. Jesus.. she can do it.. just hold her hand and pull her up to stand and she will pivot in the chair,.. she has a fear of falling.,,where into the wheel chair?? My dad is 87.. he can not be her butler indefinatly .. The caretaker comp. is understaffed and often a nightime shift doesnlt show.. My mom is still in pulls ups.. which she never wore before going into these homes. but although I ordered, demanded that they get her back on the toilet every single day., they never had the time.. so here she is a year later and has no sensations she has to go . SO I had to see my surgeon to get my MRI , finally sched for end of the month... and got an order for her to see if there is nerve damage or is it a matter of re training... I seem to have to be the Dr here again...It is exhausting the heck out of me,, but to a degree not as consuming as these defunct nursing homes that get paid 10,000 a month....3 squares a day, pretend PT, and a half room with a psycho room mate... she has been home 5 or 6 weeks now.... she should have progressed and she has where she is able to assist when having to change her diapers or whatever,, My dad expected her to be in the kitchen with him after being home 2 days helping him cook .. It is funny but not,, he has learned not to complain,. as all i say is this is what you wanted., I tell my Mother, do you want to spend the rest of your life in bed??? because I do not see you make any effort,, she got out of bed much more often at the nursing place and now iits NO...my back hurts,,,, I did order a lift for her which was against my wishes .. has not come yet... but it will contrubute to her helplessness but make pts job easier.... I dont like the PT woman from day one...doom and gloom... she needs 24 hour max care,, I said no she doesn't ... she needs a good PT person to motivate her....and if it is not you I will replace you.. OT guy very good. he does get her up.. into the wheel chair, and sit in the electric lounge chair to make it so easy,, I said leave her there all day not in the bedroom , this is not a hospital and she is not sick just lazy,... no one has left her there.. the plan was after dinner, the caretaker can get her back in the chair easy peasy no harm to your back....she knows how to do it,, I dont live here, thank you Jesus... to enforce these things,,. I can only hope things smooth out and she gets a kick in the arse.....I have to end that story there as i do have a habit of running one story into the other ,, my friends crack up becasue my mind goes from one nightmare to the other,.,,,, meanwhile I keep all of my health issues to myself,, I have no one to help to me,, my dad cares.. I am going through a lot of things right now and I feel i have days thatI get so s=tired,, going to yet another DR .. and I just break down in my car and I do no not want to go.. so unlike me,.... 3 years of cancer etc, I never cried, it is not my nature,, It was job, I didnlt even cry when my hair came out , and my looks are very important to me... but i found wonderful wigs I even wear today,. super easy and fun, but i do have hair and I am probably my hairdressers easiest client,... do the roots and highlites blond,, no grey yet,, and I just pull it up.... i have no style per se I just let her snip the ends as I let it grow,,,my hair has always been so super fine I was a tease master and hairspray... My wigs are great , no one can tell I wear one. besides that they are full and sexy, I still have to have something.... have a fab day and I look forward to chatting again,,, Hugs