BC and Fibromyalgia

runnermom1956

I was diagnosed with fibromyalgia in 2005. Been on lots of pain meds, annti depressants,massage, accupunture, meditation, exercise, etc etc..Some things have worked, some have eased the pain and some have not. I had been a a point in treatment for fibro where things where at an even keel, and then the DX for IDC. Bilat MX, now chemo..and all treatment for my fibro was put on a shelf. The Nuelasta injection bone and muscle pain is exaggerating the fibro pain and after chemo the Arimadex SE I hear, is muscle and bone pain. OY! Is there anyone else that has fibro and has any advice on how you are handling your pain while also dealing with BC ?? Would love to hear fom you.

runnermom56

bak94

I have not been diagnosed with fibro, but sometimes wonder about it. How do they diagnose you? I have had bad muscle pain since chemo and they can't find an explanation. I did not have it before. I hope someone else answers you to give you more info.

runnermom1956

thanks for replying.

I have had generalized chronic bone and muscle pain, with fatigue since 1999 and no one would believe me at the time. It's hard to explain but seeing as you are experiencing the muscle aches after chemo all I can say is that's what fibro feels like all the time..so when you have fibro and then chemo pain on top of that..well let's just say if I were suicidal..which I am NOT I understand why people in chronic long term pain take drastic measures. I never got a blood test for it. That's not how it's diagnosed. You have to go thru a physical and verbal test of sorts and if the Dr believes and confirms then you get the DX. I went thru 4 Drs until finally in 2005 a female Dr confirmed my DX and now it's in my medical records.

How long has it been since chemo for you bak94? You should keep going back to your PCM if you are thru with chemo and be persistent. There are many things that can be done to alleviate fibro pain, not all pharmaceutical.

6cats

I was diagnosed with fibro in 1998. Been on a myraid of meds... sometimes managed well, sometimes not. Lost job due to combination of over-medication & fibrofog.

Just had my first dose of chemo (AC) with Newlasta the next day. My MO (I just figured out that stood for Medical Oncologist!) chose my tx based on what she thought I'd withstand better with the FM. If you're taking Newlasta she said that it typically isn't well tolerated by Fibro folks... I started Aleve and Zyrtec the morning of the injection, and life has been tolerable (except for killer headaches). Amazingly body pain hasn't increased much.

My biggest issue since diagnosis has been sleep -- I wake up sometime between 3 & 5am -- and can't go back to sleep or nap... that means at bedtime, I fall asleep hard and fast, no energy (or desire) for whoopee, but hubby is being a darling.

Hang in there... I'm glad you started this thread.

runnermom1956

6cats

I take ambien for sleep loss due to fibro and now due to chemo..my pcm allowed it and I also take Klonipin, But it took alot of persistance on my behalf..the ambien puts me to sleep but doesn't make me sleep all night..

I told mt MO that I have fibro and she still insisted on the Nuelasta injection..I guess pain is better than a low immune system?

I am  glad I started this thread too..good to know we are not alone

indenial

I have some weird thing that kind of seems like fibro and/or chronic fatigue. Had it since 2006 and have never been properly diagnosed (kind of gave up on docs!) I'm actually finding BC treatment to be way easier on me than I expected... I think because I am so used to being in pain & severely fatigued that it just hasn't really phased me. My doctors expected me to do well on chemo because I am used to being sick! 

I did not get Neulasta... it sounds like that is what's really causing you trouble, maybe more than chemo itself? Did you take Claritin with it? It seems like the first round is the worst as far as Neulasta bone pain... at least that's what I've heard... so maybe subsequent rounds will be easier.

Withouth Neulasta, my WBC's did get really really low, but I have felt normal and haven't had any issues from it so far. I keep up with normal activities (I have a 4 year old) and use lots of hand sanitizer in high-risk situations. MO said that for the next rounds he won't even bother sending me for blood tests, we'll just assume that my WBC is low and be on the lookout for any signs of illness or infection. I don't know if he's comfortable with this because I'm young (30) or what but I'm quite happy to skip the shots!!

Do you have pain meds left from surgery? And have you tried gentler things like warm baths/heat/ice? Soaking in water is like a miracle pain reliever for me. 

runnermom1956

inde..

I know what you mean about being sick and tired..yes, I had some meds left over from surgery and took one and it really did ease the bone pain. I spoke with the Nurse today and he siad may no Nuelasta next time, so you are right, the pain probably stemmed from that injection..but today, I feel much better..so 2-3 days of CRAPPY pain and I recovered..or, like you said, maybe just so used to it.? I did take claritin..no help at all IMOI really don't want to skip the Nuelasta..for fear of infection so if I know that each round I have to deal with the severe pain for only 2-3 days I can do that. Will talk to MO about that.

Sending gentle hugs your way

RM

6cats

runnermom...

I also take Ambien and Klonapin. Sleep great until sometime around 3-5am. Yuck!

Five days out from Newlasta shot (6 from first chemo). Funny thing, my knees started killing me yesterday. I took a Zyrtec last night and the knee pain went away. Odd...

I'm still just as confused as I was before my BC diagnosis... never knowing what is fibro related vs. what is normal aging vs. being sick.... and now, I don't know if its related to chemo or Newlasta... We'll just call me confused for the next 19 weeks!

runnermom1956

Confused...oh I mean 6cat.

I just had a horrible visit with a new PCM. He refused to acknowledge that fibro is a real thing and said "Just go to pain management and they'll give you as many pills as you need" WHAAAT? Needless to say I am writing a seething letter to his superior and requesting anew PCM( I have to use a MTF(Military Treatment Facilty, hubby is US Army RET) Thsis Dr had no idea of my past nor was intersted in my present medical history. He also refused to write a refill for ambien stating:It will kill you" WTF Yeah, if you drive a car under the influence it will. I am so dissappointed with this..I need a compassionate understanding knowledgeable Dr especially while going thru BC and CHEMO!!  Why do we get treated this way? He made me feel like all I was there for was pain meds...and then he said I made him late for his next patient by 30 minutes..in other words I was wasting his time! UHG.

Sorry to vent..but this had happened many years ref fibfro and not being able to find a Dr who validates it as a real medical issue..I finally found one, a MAJ at the MTF and he was my PCM since 2005..but then he left the militarty and we were assigned another..this Dr(if you want to call him that.)

Cat, I am sorry you are having pain but please tell your Dr, or whoever will listen bc we should no suffer in pain..ever. The Zyrtec or claritn never worked for me. But I found out I had a kidney infection and was treated for that and now my pain is almost gone..(but never is)

gentle hugs to you

runnermom

6cats

Hey runnermom,

Hang in there and fight for a doc who will listen to you... they will give veitnam vets who suffer from neurological pain (agent orange) enough morphine pills to kill a horse... and they won't give you ambien... Give em hell and fight for a new doc. Remind them that while your hubby fought for our country, you were at home, fighting for your family, your relationship with your soldier, your community and your country also! You deserve the same respect that we give our soldiers.

Done with my rant.... get a new doc... gentle hugs!

runnermom1956

thanks Lynn,

I will fight and keep on fighting til I get a Dr who respects me and is willing to help me.

On another subject..I just got a phone call from my boss(I have been their Nanny for 6 years) and she told me that I am no longer a good match for their family because I can't be there everyday due to my BS treatment. WTF??? What is this..low blow day?? OMG I am so hurt right now I have no words.

I hope you are having a much better day than I.

HUGS back

Dee(runnermom)

hydeskate

I was dx with fibro, sjogren's and Rheumatoid after I started my battle with cancer.  It wasn't till I was on a chemo break they figured out the rest of my issues.  I was put on Meloxicam, then Napronxne for all the achey didn't work, so my onc put me on Oxycod 10-325 which was a world of difference, but only worked for a year.  Now I have extended release oxyvotin 10mg one in the morning and one at night, I also take Celebrex, a muscle relaxer (helps me to sleep), a pill to increase saliva(sjogren's), and Plaquenil for the Sjogren's. 

6cats

Hi Fibrofriends,

I don't know why it took me two days to ask you folks about this... I guess I was just thinking that everything is a reaction to chemo. So here it goes...

I have no fever, no redness, but I have pain all over my body/skin like a mild sunburn. Skin sensitive to touch, clothes are uncomfortable. Started at the base of my skull and shoulders and has worked down my body. Even the soles of my feet are sore. This has been going on since Friday evening (just neck and shoulders then). Today, my neck and shoulders aren't as bad, but the lower part of my body hurts pretty bad.

I have tried hydrocodone, but it doesn't seem to have done anything, so I've stopped taking it. Any ideas on what this could be? Could it be an odd fibro flare, or chemo SE?

Looking forward to some input.

M360

My first diagnosis with Fibromyalgia was in 1990 it was so bad I had infiltration injections into spine.  Most medication didn't help until I was put on Lyrica.  I also have arthritis and took Enbrel injections 50mg twice a week.  Fibro was secondary after I had osteoporosis and multiple fractures.  I have tried everything around the world going to specialist etc.  When I got BC, surgery, chemo and Nuelasta shots it was human torture.  Here is what has worked for me for pain with Fibro while on BC treatment.  First Cytoxan helps the pain overall with my arthritis and SE from hormone and other chemo's.  I use Volteran cream and LMX cream that I rub into pressure points and where there is muscle pain.  Also Lidoderm Patches for pain work if you can take adhesives, I can't.  You can cut Lidoderm Patches and put them all over your body for 12 hours on 12 hours off.  Aslo I have a jacuzzi bath when things get really bad I go into such, listen to Dr Andrew Wiel's "Sound Body Sound Mind"  that works on redirecting thought patterns for relaxing, drink green tea, then after rub on Volteran and LMX and wear a loose night gown.  Chemo has hightened my nerves and situation but you have to keep trying other things that can possibly work for you.  Cytoxan is given to me because it has helped my nerve, joint and muscle pain so that I don't need a lot of other drugs.  I have Vasculitis also.    I've been given morphine but my stomach can't take such and I'm vomiting for three days afterwards.  Fibro is a real disease,  I've been diagnosed at Stanford, Cleveland Clinic and other major medical hospitals for such.  It is usually a secondary disease with an underlying cause.  For the lady who had major burning and red skin, two months ago such happened to me, I was on fire, and my LE arm turned so red, went to emergency room and then was hospitalized and skin and node removal showed Lupus.  Now did the chemo and other treatments bring on such?  

What I have found through the years are all of these are autoimmune responses, allergies are such. I often wonder in the BC triggered these?  I've been told that people who have such severe autoimmune diseases don't usually get cancer, the autoimmune cells eat off and kill cancer genes.  For this reason I'm in a number of genetic studies with me giving blood and tissue for research for doctors to understand cancer in such patients with many autoimmune diseases.

I'm don't know if your doctors told you this but if you were taking Enbrel or other such medications then you cannot have radiation therapy for infections could set in so quickly.  Only surgery and chemo along with hormone therapies.  I have found that most hormone therapy has caused flares and allergic reactions so I have to have Cytoxan to counteract such.  This is what works for me.  But any of you ladies experiencing such should talk at length with your Oncologist about SE's and pain.

Hope this helped any of you?

corky60

Fibromyagia is a real illness.  The American College of Rheumatology has diagnostic criteria and measurements of symptom severity.  You can print this from their website.  Try keeping a daily journal of your symptoms, how much sleep you got and whether or not it was restorative.  This is called "documenting" and is helpful to show to a doctor.  Lyrica, tramadol, lidoderm patches and warm baths can help.  When we are in pain it is hard to be proactive but please don't let a doctor dismiss your symptoms. If you've been fired because of BC can you collect unemployment or disability? 

rejoyce

Hello Fibro friends!

I'm so glad to find this board.  This is my first post and hope I can find others with similar situations or advice.  I have had fibro for several years and to complicate things, I added diabetes 3 years ago.  My Mom passed away from ovarian cancer and I learned I also carry the BRCA2 gene.  I had a prophylactic hysterectomy and unfortuately chose to not move on the mastectomy as well.  Now I'm five months into this breast cancer fight.

I've been managing the fibro pretty well with the first part of chemo and was doing really well walking every day.  A week ago, I had my first Taxol treatment and boom...fibro flare big time! I had neuropathy symptoms the same day as taxol and it continued a couple days, along with very painful, achy legs and arms. This must be normal for fibro because they gave me the vicodin prescription on the way out.  I'm scheduled for three more taxols --- spaced every three weeks.  I've read others do the weekly and if my reaction to taxol is too bad, I will change to that.  Do the blood counts recover in a week?  Is it worth pushing to switch to weekly?  I have the kids home for the summer and so far, I feel so awful at what I can give them.  I don't know how I'll manage taking them to chemo too. 

Thank you all for your help!

P.S. I'm not sure how to get my diagnosis info on my post so here it goes:

2/5/13 Right Mastectomy stage 3a and 6/15 lymph nodes, left prophylactic mastectomy - triple negative/BRCA2

Completed 4 cycles of A/C Chemo and 1 cycle taxol (3 more to go)  Future: Possible radiation and reconstruction.

M360

rejoyce,

For me the best was to deal with the cancer and fibro along with arthritis was they added Cytoxan to the mix.  Wah Lah, no pain and no neuropathy.  Why this works this way for me has been wonderful.  Another thing to do is ask for Volteran Cream along with LMX cream and rub into affected areas.  I've been on Lyrica for years and it does help a little but I found the above so much more helpful.

Good luck and I hope you feel better soon.

6cats

M360 -- that's odd, I've had a similar reaction with Cytoxan... much less fibro pain than before. But, alas, I just finished my last Cytoxan. Although I don't think I'd want to keep pumping that chemical into my system -- I'm curious how things will be when I start Taxol + Herceptin in a couple of weeks.

rejoyce

M360,

Thank you SOOOO much for your advice!!! I will definately use it and talk to the doctor.  It's good to find another fibro friend that has gone through this.

I hope you have a pain-free day!  Thank you!

6cats

I just started my weekly Taxol+Herceptin (12 weeks). By comparison, I felt "really good" on AC -- only one mild fibroflare, I was amazed at how "easy" the AC was... but with this combination -- starting on Day 3 I've flared big time. Even my ribs hurt.

I guess my first question is whether this is the Taxol or the Herceptin (or maybe just life stress)... I can't imagine 12 weeks of this level of pain...

Has anyone else experienced this?

Woodylb

hello ladies, 

3 years ago i was dxd ILC stage IIIB 21/23 nodes Er+pr+ her2 neg. now a month ago on a routine check and scans a liver biopsy i am dxd with stage IV Liver mets ER+ Pr-HER2- . Just started chemo carboplatin+ gemzar regimen. Femara was stopped . Is anyone in this situation? Has anyone take this combo? Any advise? 

mybee333

hello - tried at points several years ago to start a fibro/post BC thread but they never went anywhere. Anyone else out there with fibro struggling with aftercare and pain management?

MMac

yes, struggled with fibro at work and during treatment it was better.  After starting arimidix and then tamoxifen I have been so much worse.  My joints were extremely painful on arimidix. Tamoxifen had made the muscles more painful and has moved to my legs and now they are in pain all the time.  I try to ignore and live my life but when I do something I am always worse.

glennie19

Another one with fibro here.

Spookiesmom

Hi Glennie. I have it too. Was dx'd waaaay before ca. I tried all sorts of meds, couldn't do narcs as was subject to random drug tests. Best thing I did there was retire.

I am more sensitive to weather changes, lights, noise, crowds. Chemo didn't seem to bother the fibro much, I did/do have fibro fog and chemo brain at the same time

6cats

Just dx with a second BC. This time I will be having radiation and hormone-blocking drugs. Curious how people with FM/CFS handle both.

Thanks in advance!!

crowfeathers

I have fibromyalgia and rheumatoid arthritis. It's extremely fatiguing and not fun at all. On the weird good side, adriamyacin is taking care of the RA while I'm on it. On the bad side, rheumatologist says that the RA will come back substantially worse once I'm off it. So I'm not sure what I'll be doing to treat it. I was on Enbrel and leflunomide, but no more of that for me!

Also on the good side, Neulasta does not give me bone pain. I was like, "welp, gonna have bone pain," but no! Nice.

6cats

crowfeathers - that is too funny, I sailed through my adrimyacin too! My fibromyalgia was 200% better while on chemo. I did not come back worse fir me... it just reminded me that it had a nice vacation! Good luck!

Did you have radiation?

Gingermiss65

This is an old thread, but the more postings, the more informative it is for others. So, I am going to join the post. I have osteoporosis, it was slight before my 12 x weekly Taxol and 17 x Herceptin. The Taxol made my osteoporosis worse on the left side. The hip area. Weird, I know to have it worse in one spot. Anyways, I had no stiffness while on Taxol, but a bit while just on the Herceptin. That finished and not long after is when I started suffering severe stiffness on my legs. I think a lot of it was the Taxol. I went on Naproxen for about 6 months. I am now getting off it.... and now I am feeling aching in my arms and legs, joints. I don't sleep at night. I get up btwn 4-5 times a night and I stiffly walk to the bathroom. The stiffness did get better on Narpoxen a bit. But it still hasn't gone totally away. So now I am being tested for Fibro. My mother has it too. Geez..... at least I know now what I am pretty sure it is. You just always blame it on the chemo. It must be the chemo still. I am glad I found this thread.