Chemo induced Fibromyalgia

Since you have "failed" gabapentin,, perhaps give Lyrica a try. Some insurances, including mine, want you to "fail" the cheaper gaba before paying for the more expensive, and brand only Lyrica.

@Blownaway, I too had Taxotere, Carboplatin and Herceptin. My pain started in my knees and the travels all the way up to my shoulders. Every inch of my body hurts. My oncologist sent me to a pain management doctor. He, in time, said there is no diagnosis to give other than fibromyalgia. I take 300mg of Lyrica and 40mg of OxyContin. I, too, have no short-term memory. I totally believe it's all from the chemo regimen. Hang in there, we're all still here and STRONG

yes yes n yes i too suffered with pain fstigue etc my pcp diagnosed me bout 15 yrs ago had insomnia told her she discovered i did indeed have it due to chemo treatment. Dince i take benedrl for allergies n sleep well now symptoms arent as bad but still there along with aging process but bearable take care.msphil(idc. Stage2. 0\3nodes. Lmast.chemo. rads. 5yrs tamoxifen)

Hi Ladies. I have not had breast cancer but I did have another type of rare pregnancy cancer after the birth of my now 7 year old. I underwent chemotherapy for 5 months to find that a few weeks later, I couldn't even MOVE. I was 40 years old at the time. My regimen did not include any of the Chemo drugs listed in this forum however, my muscles and joints were locked and I needed help from my husband to get out of bed each morning. I limped around all day, not being able to pick up something if I dropped it on the floor. It was and has been the most excruciating pain that I have ever experienced in my entire life. I thought I was going to have to take a permanent disability leave from work and never become employed again. I was also 30 lbs. over weight after chemo. A friend at work recommended Platinum x-30 to assist me in losing weight. I bought it. After about 2 weeks, I noticed that my muscles completely loosened and my hips didn't hurt at all. I looked up the ingredients to find that they were all natural bioidentical substances. That is, they mimicked estrogen and progesterone although they are actually NOT hormones. It was then that I realized that my problem was really one of Medically Induced Menopause.

My FSH was through the roof but I knew that already once labs were drawn post chemotherapy. My conclusion is that I do believe that most of your problems are due to either hormone imbalances or no hormones at all. The drawback is that estrogen is definitely not good for breast cancer patients but maybe you should discuss taking an over-the-counter menopause supplement, which I am also about to try because the Platinum x-30 HAS BEEN DISCONTINUED!! I have been using it for 6 years but since running out last month, my muscles and joints have frozen up again and this time the pain seems to be a MILLION times worse than before. My yearly checkup with my doctor is 2 weeks away and I have a confession for her: I have recently been taking my younger nieces estrogen/progesterone BCPs (she has several packs). Last Monday I was back to needing help out of the bed after 6 long years of independence. The only thing I could think of was HORMONES!! I took 1 pill that morning and within 20 minutes I could moved my head from side to side. By the end of the day the pain was about 85% gone. So I took one on Tuesday as well and by that afternoon I felt as limber and loose as I did at age 16. I absolutely could not believe it. I did not take another one for the next 3 days. Then at 1:00am this morning, I tried to get out of bed for my bathroom break and my hips ached so bad I had to roll onto the floor, then stand up. I managed to get to the restroom as well as take another BCP. As of this second (9:00a.m.) I am pain free. For me, THIS IS ABSOLUTE PROOF THAT THIS SO-CALLED FIBROMYALGIA IS DUE TO LACK OF HORMONES AND NOT NECESSARILY ANY PARTICULAR TYPE OF CHEMOTHERAPY. I also believe that hormonal issues are the culprit of pain and arthritis in the elderly population. The exact pain that I am having is what my grandmother would describe to my mom when I was a little girl.

I was never officially diagnosed with Fibromyalgia, I just stumbled upon it when googling my problems. I told my doctor about the Platinum x-30 and she insisted that I stop taking it but I didn't, another confession I must tell her. The biggest problem for me is, I don't want to take hormones but it seems I have no choice. I am going to ask my physician for some sort of Hormone Replacement Therapy. As for you all, I want to make sure that you don't rule out hormonal issues as the culprit to your problems. Happy Holidays!!

Hi Julie, my name is Kathy. I too am 5 years out and have severe joint and muscle pain along with severe fatigue. I too was 50 when my cancer hit me. I had Stage 3B (triple positive) Her2, estrogen and progesterone positive. I too had Taxotere, Herceptin, Carboplatin. My doctors have diagnosed it as some sort of "myalgia". Not being able to put an exact name on it. I could not tolerate the pain as it seemed to increase in time. I now to Ms-contin, which is a slow release morphine (15mg). It's great, no pain, no druggie feeling. I actually have a little more energy than before. I chose medication because my doctors say if your body is in severe pain it causes inflammation. That in turn may cause other medical problems. Living with the pain was far worse than being on medication. I have researched all the medications and at the low dose that I take, there isn't much of a risk if any. Don't be scared to take something, there's no reason you have to live in pain, just saying.

Dear kgcorey,

Welcome to the community. We hope that you find some support and information to ease you way. We are sorry for your pain but glad that you reached out. This particular topic has not had too much activity of late so you may also want to explore and review some of the topics under the forum - Pain. If nothing resonates for you there you can always start a new topic. We hope that you find some relief soon. The Mods

hello all im 22yrs Survivor Praise God i was diagnosed at 43 no histiry of breast cancer in family i started getting symptoms of myalgia didnt know what it was yrs after treatment couldnt sleep tired pain aches doc finally diagnosed Fibromyalgia i took sleep aide and then symptoms subsided. i still have some symptoms but not nearly as bad good luck. God Bless. msphil idc stage2 0\3 nodes L mast chemo and rads and 5yrs on Tamoxifen

After reading all these posts, we need to bring our tablets or laptops to appts and pull this community's posts up in front of the Dr's to prove it's not in our heads. Fibromyalgia is real and can occur with many forms of chemo, pill form included. I'm on Xeloda and I'm having carpal tunnel like symptoms and i'm not even working! I sit in a recliner most of the day so I'm not doing anything myself to cause this pain.

my pain started in my knees and just slowly over time leapt up my whole body now my whole entire body is in excruciating pain. My doctor says he never heard of it from chemo either but everything I have read about the chemo drugs causes bone pain.

I concur with revnet that my muscles feel like I've worked out with a personal trainer who had an ax to grind. Also with woogshaw regarding deep bone pain throughout body and joint pain & weakness causing them to be easily damaged. Wrists feel like I have developed carpul tunnel. Shortness of breath, fatigue..... My onco at MD Anderson acts clueless. She has me on gabapentin and tramadol. Neither alleviates the pain completely. I have requested an appt with a rheumatologist (also at MDA) and was told my records will have to be reviewed to see if it is warranted. Well, I just got a call, my appt is Oct.5th. Hope there is a better answer than opiate type drugs. I don't intend to be told this is not a result of chemo.

woogshaw - Are you taking Tamoxifen? I had headaches on Tamoxifen that stopped as soon as I stopped taking it.

Hi Kathy! I just joined tonight as I lay here in bed for yet another sleepless night due to severe pain and insomnia. I was diagnosed at 42 (16 years ago) with Her- 2 and 9 of 11 lymph nodes involved. My prognosis was very poor since it was hormonal receptor positive and I was pre-menopausal so I had a complete hysterectomy (after doing my own reaearch) to basically save me from an almost guaranteed reoccurrence within 2 years and possibly untimely death. Underwent the full gambit of chemo & radiation. Cytoxin, Taxol, Adramycin, 36 radiation treatment & did the Herceptin Clinical Trial Study (not yet FDA approved 16 years ago) with 4 other women. I am the only survivor.

Diagnosed again 2 years ago with a Cancer of other breast but this time it was a "good" cancer, if there is one, but was NOT Her-2. Thank God. Another radical mastectomy but no need for chemo a second time.

I have started my research for help again due to severe joint, muscle & overall skeletal pain. It's everywhere now. Feels like arthritis in my whole body. I've had 15 surgeries since chemo for deteriorating joints and tissue I.e. Double back fusion, 2 torn rotator cuffs on both shoulders, torn meniscus, tendinitis & bursitis in knees and the list goes on.

Doctors look at me like I'm crazy. I cry all night in pain and must work selling real estate because I am self-employed. Thank God because mornings are tough for me.

Your story resonates with me and I'm taking it with me, along with others to my doctor. I'm suffering and no doctor seems to want to do anything about it. I feel so sleep deprived and feel fatigued ALL of the time. I was never like this. I worked out everyday with high energy and all these years later I feel like I've been run over by a truck.

Thank you for your story. It helps me to know that I am not crazy and that my pain is real. God Bless You all who are suffering as I am!

Joa

Gees, ladies, I hope these residual muscle/joint pains aren't PERMANENT!! I have heard that some of the neuralgia issues are indeed permanent....the price we pay, sadly.

Lita

I finally gave in and went out and bought a vape pen and cartridges. My outside oncology nurse consultant (who specializes in alternative and cannabis) told me to get a pen a couple of months ago to deal with break thru neuralgia and fibromyalgia-like pain.

The breaking point for me was this weekend. Friday night, I only slept ONE hour because of pain. Slept a few hours more on Sat night, but Sunday night was the worst. I couldn't even find a comfortable position to wait it out, the pain on my right side was so bad.

All it took was one hit off the vape pen (of course I coughed and wheezed, ha ha, since I haven't taken a toke off a joint for almost TEN years), but it did the trick. I actually went into a deep sleep where I could remember my dreams! That hasn't happened in a while. I used the Blackberry Kush variety that my onco nurse recommended. It's an indica strain, so it didn't cause me any anxiety or agitation like sativa strains do.

Lucky I live in a legal medical marijuana state!

Take care, dear friends, and here's hoping for some relief for you all.

Lita

Justkeep: So sorry to hear about your pain ( ! If you read some of the material on the SEs of these chemo drugs, some of them definitely say that fibromyalgia-like symptoms are possible.

Once again, we "patients" are more in-the-know than the drs. Of course, if the MO is a general cancer MO and not a breast cancer specialist, s/he may not be up on all the side effects of each drug. There are more than 200 different types of chemo out there, so it's hard to keep track of every SE. But for Heaven's sake, neuropathies, neuralgia, and other fibromyalgia-like symptoms are fairly common. My hands and arms are shot. I use Topricin and wear splints, but once they switch me over to aromatase inhibitors the "fun" is REALLY going to start (.

Lita