living with joint pain long after chemo (WHY)

Hi! I am 54 and suffering same long term chemo effects after breast cancer, hard joint pain and expecting knee surgery as actually can hardly walk.

Anyone tried regeneration treatment with mesenquimal cells?

evemcqueen said:

joint pain after chemo

In 2008 I was diagnosed with Stage IV Her2 Breast Cancer. Tumor was so large that I had to undergo chemotherapy for several months before a radical mascetomy was performed. Left breast removed and 27 lymph nodes. After surgery, I spent then next year and a half on Chemotheraphy Herceptin. Shortly after the mascetomy, I began experiencing extreme joint/bone pain. Started in my shoulders but over time has spread to every joint in my body. This has impacted my life severly. When I complained to doctor about it, they just shrugged it off as if it was nothing and they couldn't imagine why I was having this pain. The pain was so intense that I was put on the patch 100mcg to help with pain. Patch was supposed to work for three days but reality is... only lasted two days and even worse I would often find the patch was gone, having come off after bathing or a day at the beach and wouldn't notice until pain started setting in. Of course, insurance (medicaid) is not going to allow a refill before 30 days. Finally, so fed up with the patch, I requested pain relief in form of pill and have been taking 60 mg extended relief morphine with 15 mg morphine for breakthrough pain. I cannot even vaccum the living room and my bedroom or hang out clothes on the line without it causing pain so I would take three or four of the 15 mg  and it was working great for me. Last month, my doctor pulled the 15mg from my medication list. I could not believe it and was very upset because it relieved the pain within 20- 30 minutes and I could manage to get a little more done in a day. The doctor has instructed me to take the 60 mg. once in the morning and then again at bedtime. I have NEVER used pain medication and feel it should only be used if I am in pain. I feel the doctor is creating an addict because now if I don't take the 60 mg in the morning, by mid day, I am having withdrawal pains.Breaking out in cold sweats and barely able to do anything but lie in bed or on the couch. This makes no sense to me whatsoever. I want to make the point that when I started having the severe joint/bone pain in my shoulders, elbows, wrists, legs, ankles,back (really bad) the doctor tried to tell me I had fibromyalgia. I had researched the internet extensively trying to determine the cause of my pain. One thing I learned was that opiates do not help fibromyalgia so it wasn't possible that was the cause of the pain because the patches and the morphine definitely relieved the pain. I am extremely frustrated because when you mention this pain to the doctors (and more than one) they refuse to acknowledge that the pain could possibly be from chemotheraphy. It was only after reading many stories such as the ones on this page that I discovered I wasn't the only one suffering with this. Approximately two weeks ago on NBC Nightly News, Brian Williams announced that research has revealed some types of chemotheraphy has long term side effects, the chief complaint....bone/joint pain. I am now in the process of trying to find a new pain management doctor due to the fact that obviously he doesn't understand how intense the pain is and his response to my complaint is that " I must be overdoing it and to slow down"! That is in direct opposition to the advice that the leading Pallative Care Expert in the United States, Dr. Buerra,employed by MD ANDERSON CANCER CENTER has told me. I was under his care for almost three years before returning to South Carolina. He directed me to make sure I got at least 45 minutes exercise per day, that it was imperative if I were to get better. Basically, Dr. Dunbar of South Carolina where I reside and returned to after three years at MD ANDERSON is not only creating an addict with the manatory dosage of morphine morning and night but also by taking away the 15 mg of morphine for break-through pain, it is not possible for me to get 45 minutes of exercise per day due to the pain. Something I also failed to mention is that upon my return to SC (he was treating me prior to my transfer to MD Anderson) instead of keeping the prescriptions down to as little as possible, he has prescribed a variety of other drugs that I have never taken and don't care to take. One of them I tried, knocks me out for 12-14 hours and upon awakening, I feel as though I have been run over by a Mac truck. I cannot understand why he feels the need to fix something that isn't broken. As I mentioned , I have never been on pain medication in my life and feel that the less pain medication I take, the better off I am. Am I just crazy thinking, why take 60 mg morphine in morning if I am not in pain at that time and even if I am, it is extended release so it takes so long to kick in that half of my day is gone and then take another 60 mg at night, whether I need it or not? My common sense tells me that I need a strong enough fast acting pain medication to take WHEN I start hurting real bad. I would aprreciate any and all feedback on my situation. I give thanks to God for those of you that have shared the joint/bone pain I have been suffering with for almost five years. I know now that I am not alone and I am certain the chemotheraphy has caused this condition which has basically stolen my life. As you know, it isn't even possible to go to the grocery store shopping because within ten minutes of shopping, my joints/bones start to ache and within 30 minutes, I am back at home in bed due to the pain. I used to be very active. Planting flower beds, camping, fishing, riverrafting, etc.. all of those things are no longer possible. If I had known the pain and suffering I have been experiencing since taking that chemotheraphy, I can assure you I would have opted out of the plan and left it in God's hands. Thank you for taking the time to read this and I pray for help and feedback. May God Bless You and heal you.

 

After beating stage 3 Invasive Breqst Cancer with surgery, chemo and radiation, the muscle and joint pain, along with fatigue, neuropathy etc. Whether from taxol or endocrine therapy is ruining my life.!I regret choosing to pursue chemo and am considering ending endocrine therapy despite knowing the consequences. I am tired of fighting, I am broke and lonely and used to be a trial lawyer and highly functional. Now I can't remember where I put my glasses. Or fill out a form. This is awful. I give it two months and will try to exercise. After that, I give up. This is no way to live.