Posted on: Mar 10, 2009 08:10PM
I was diagnosed with ILC and will be having surgery on March 24th. Is there anyone who has Fibro and/or chronic fatigue with breast cancer surgery? I am taking a lot of medicines right now and live in chronic pain. I am worried about how all this is going to go together. I don't sleep very well now and from reading many posts here I know what I am in for. Hopefully,I know everyone is unique in healing and I have gone through 7 other different surgeries before I was diagnosed with Fibro and healed quickly. I would just love to find someone who has experienced both to communicate with. You all are heroes to me.
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Mar 17, 2009 07:00PM Isabella4 wrote:
I have Fibro, have had it some years, and do the rounds with docs and various tablets. I am also in just about constant chronic pain, but you just learn to adjust things and live with it ! Since bc I seem to have just let Fibro take a back seat. Its there, it doesn't seem to be getting any worse, doesn't seem to be getting any better.
I had surgery for bilateral mastectomy, and also surgery for a port removal, and also for a drain from my mastectomy surgery that was in so long it had grown in, and couldn't be removed by the docs from the outside of my body. ( No doubt when I was asleep they just hitched the drain to a car and p-u-l-l-e-d !! ....I didn't feel a thing ! ) I had no adverse reactions to surgeries, and my healing time was pretty good, in fact I was well pleased with the quick clean healing of the mast. scars, they were red for some weeks afterwards, but nice and clean, no weeping bits. I was a great one for changing my dressings, probably more than I should have done, but I got relief from bathing, and cleaning up the scars. Used loads of Aqueous cream, as advised by nurses, as well.
I was left after my surgery with pain in the 'bad' side arm,from nerves cut during surgery, and was told it would go away, but it never has, and thats pretty bad some days. its sometimes hard to say whether its Fibro or neuropathy from my arm on the RHS of my body thats jangling that particular day !
My 3 wishes , if I were to be granted them would be Peace Peace and more Peace from the constant pain in my body. !!! Just one day would be nice, thankyou very much !!
Let us know how you get on and how your healing goes after your surgery on 24th, I will be watching with interest. Remember to stock up with a laxative, the anaesthetics, plus all the pain tablets we take for Fibro can really 'bung' you up. I had big problems in that department, no-one warned me, so take this as a warning now !!! Good Luck.
Oct 4, 2009 12:03PM sandrawhipple wrote:
I have just went through my first diagnosed surgery for breast cancer-Rt side. I had a lumpectomy that was as large as a woman's fist. I had a wonderful surgeon. He did everything possible to save all the outside skin & nipple area. The results were tremendous! I too experience the neuropathy, but it is gradually going away--I am about one month out of surgery.
I have a severe case of Fibromyalgia, and am learning that it has an effect in breast cancer-John Hopkins Hospital in MD. I avoid several different kinds of food to avoid a lot of chronic pain. I do very little medication. I use Tramadol--prescribed by my Fibromyalgia specialist. It works wonders. I am careful not to use too much--in time you can become immuned to any medication until it doesn't become effective enough. I ignore a lot of my pain, but if I use Tramadol, and keep it in my system just enough to take off the worst edge, I actually do not feel pain. This is the first time I have felt like I could get out of pain, and it happened soon after my cancer surgery. I am excited that I can live without so much pain. I have not started treatment yet--I am waiting on the oncotype dx test to determine my treatment. I only take my bloodpressure meds & the Tramadol. I usually take one tramadol, and then if it doesn't take off the edge, I use one 200 mg Ibuprophen to kick off the remainder. It works for me. I like to keep my mind sharp and ready for my work. I am an artist, and writer. I am getting ready to publish a music instruction book for college students for January semester. So, I need out of pain, but functional at all times. I hope this will help you. I find that many foods high in starches cause tremendous muscle pain, and I stay away from fats and sugars. These are hard on Fibromyalgia. I stay away from yeast products such as bread, pasteries, pasta, and rice. They are not only starchy, and contain much sugars, but most of them contain yeast. Let me know if this is helpful. I am trying to do a study with my specialist to see if certain things will eliminate strong chronic pain. I also understand that Fibromyalgia is a higher risk for breast cancer. I am hoping I can do definite things that will eliminate the possibility of recurrence of cancer also. If anyone has information, I would be abliged to know. Hope this works for you. Sandi Atkins-Whipple
Oct 4, 2009 08:04PM Sukiann wrote:
I have fibro. I'm finding it very difficult to manage the pain now that I am on arimidex (which is known to cause muscle and joint pain).. Is it the fibro or is it the arimidex. My pain was more managable before the cancer. I am taking cymbalta and it really worked before the arimidex. Have you tried this? It is an antidepressant but works on pain as well. I might asked to have my dose bumped up. I'm on 60 mg and I can be bumped up to 120 mg. I don't want to take more meds but I'm hurting.
Sandra - I haven't heard of tramadol. Can you tell me what kind of drug this is?
Oct 14, 2009 07:47PM sue_blue wrote:
I have fibro and am on tramadol. It is a mild opiate. It doesn't quite do it for me, but it does take the edge off. I had to bump it to three times a day in order to not end up in tears from the pain. The Tamoxifen really compounds the pain. I was on Mobic until my blood work came back showing kidney damage from CT contrast dyes and chemo treatment. The Mobic really did the trick, but can also cause kidney damage.
Oct 25, 2009 05:48PM mgm42 wrote:
I'm so grateful to all of you. I thought I was going crazy with my painful muscles, muscle spasms and joint pains. I switched AI's every several months and am now on a holiday from all of them. My oncologist suggested that I see a rheumatologist, but I was so sick of being a patient and so convinced that it was the AI's causing my problems, that I opted not to make that appointment. Well, girls, you've given me hope. I can go back on my Arimidex and maybe get some kind of meds to help with my burning, aching, hurting, spasming muscles, tendons and joints, as well as those spots that feel like bruises all over my torso, front and back, as well as my arms and hips. Maybe it's fibromyalgia. I've seen the Lyrica commercials, but never related what I was feeling to what they were showing in those ads. First thing tomorrow monring, I'm calling my oncologist and asking for a referral, then asking if I can go back on the Arimidex. You've all put things into perspective. Thank you, thank you, thank you! Hugs,
Oct 25, 2009 05:51PM Sukiann wrote:
Marilyn, what you have described is exactly what fibro feels like. It is horrible. I was diagnosed with it a few years ago and the arimidex just makes it worse. There is hope so get that referral. I long for the days long ago when I felt really good.
Oct 26, 2009 10:40AM mgm42 wrote:
Longing for the days before bc is a standard cry in my household. I just wish that I could feel like I did 2 years ago. Whatever troubles or worries I had at that time were silly compared to what we all face each and every day now that BC has hit. We are changed forever. I'm hoping that once the Arimidex and maybe fibromyalgia are finished with me, I'll be able to get on with my life as I once knew it. Or maybe it gets good but it will just be a different kind of good. Let's hope.
Feb 3, 2010 05:42PM theredhead wrote:
I am finally back posting as I have been so overwhelmed with the fibro, bc, surgeries, and now lymphedema. I came back and read all the posts and found them interesting and sad. that I didn't answer sooner. I never heard that fibro made you more susceptible to breast cancer that was new for me. I am on so many meds right now that i don't have to eat one meal, the meds are enough. Not Lyrica, that was a bad one for me. I am taking Femara instead of Tamoxifen because I take Cymbalta for pain. But I digress.
My right breast surgery was a mastectomy and it was not so bad but then I developed a hematoma and the next day they had to redo the surgery and that was a downer. My diagnosis changed from stage 1 no chem or rad to 23 lymph nodes taken and 7 showing cancer. I just wasn't emotionally ready for it. The tumor itself was 7c if you took into consideration the spiderlike tentacles. The top was a bit over 2.. Because of the fibro I had decided early on, no implants and I was happy I did. After chemo and many shots of neupogen with critical levels on my blood work I started radiation for 33 days. I was burned badly and the skin was of no use during reconstruction. I had a surgery to transfer my blood vessels from going horizontally to going vertically with an incision across my bikini line and 4 weeks later 3 days before Christmas I had a Tram Flap and an uplift which was difficult and still is to get over. I developed Lymphedema halfway through the radiation and although it isn't very bad I use a flextouch pump 5 days a week to make sure I can control it and wear a garment when necessary. All of this has sent my fibro into awful flareups.and just everyday pain at all the trigger points. My hair is still growing slowly on my head but rapidly on my legs, that's just not right...
I am taking Tramadol (generic for Ultram a pain med)and Soma (muscle relaxer) morning and night, Topamax for the migraines, Elavel to sleep, Cymbalta (120) for pain Amatiza for constipation (the best stuff in the world) and Vicodin or Percoset for the really bad days.I also take Zocor for cholesterol and Lavaza for Triglycerides.
Of all of this the hot flashes really are the worst to deal with. They don't let you sleep and they feel like little pins stuck all over your body. I tried Amberdeen from the Internet but now with the 5 year med my doc says I shouldn't take it. GREAT If men got these there would have been a cure years ago. Now that my journey is near the end with just one more minor surgery to go and waiting for my hair to grow back, I am finding it hard to find that person I was before. Even the fibro before didn't stop me from doing things, now I feel so overwhelmed it is hard to jump start my body every morning. My husband had a liver transplant and is on SSDI so I am the breadwinner with one left in college,6 kids between us and I raised 2 other stepkids, 14 grandkids and one on the way and 2 great grandkids. There is always some kind of drama going on.
There is new research going on that says fibro may be a virus and many studies are being conducted. We will see, at least it isn't like it used to be where no one believed there was an illness.
I wish you all painfree days!
Feb 4, 2010 07:45AM Sukiann wrote:
Hey redhead (I have a redhead, she's 16 - Yikes!), I'm sorry you are having such a bad time with the fibro. Mine seems to have leved off this week. I think that the lupron shot a couple of weeks ago really aggravated it. I've been taking glucosomine, msm, and chondroitin (oestobiflex) and it has helped with joint pain. I think when the joint pain is better, the muscle pain gets better too. Anyway, you are on so much medication. Isn't it difficult to figure out what is working and what isn't? I know you are in so much pain that you'll take anything to make yourself feel better. What about stopping some of the meds (of course under a doc's care) and adding them back so you know if they work or not? This would be difficult I'm sure but it may be worth it. It really sounds like you have your plate full with all the kids - A blessing but stressful at the same time! Stress does play a part in flares. I remember when I moved into a new house 4 years ago I flared so bad. It was a happy time for us with a new house and all but the stress of moving made me flare. If you could lessen your stress I'm sure it would help (easier said than done, huh?).
Hope today is better.
P.S. Interesting about the fibro being linked to a virus. are you talking about he epstein barr virus?
Feb 4, 2010 10:27AM Angel40 wrote:
my co worker has fibro and she said the magnesium with malic acid help her a lot.
this is the website for fibro care and other products.
anyone heard about this or ask their doctors?
Mar 10, 2010 07:56PM benzmum wrote:Thanks for all the ideas, women-friends! It was comforting just to hear someone else talk about the "burning" pain. Mine's a result of the axilla nerve being cut during my lymph node biopsy surgery, and it feels like the underside of my upper arm is on fire (well, not quite that bad, but fierce anyhow). And I realized how much I missed talking with other fibro sufferers - I haven't made time for ages to join in discussions online.
Mar 11, 2010 01:33AM Mantra wrote:
I've had fibro for 27 years. I did find the BC surgery with TE caused some flareups. My doctors treat my fibro as a sleep disorder stemming from a central nervous system problem. My complete treatment plan involves switching a wide variety of night meds until the right mix is found. I can sometimes take the same pills for a year and everything is fine. Then all of sudden it flares up and I have to play with different doses and meds until I hit the right combo.
Mar 15, 2011 11:55AM LindaLee1949 wrote:
I am 11 weeks out from a mastectomy and a tram flap reconstruction. After 1 week in the hosptial I needed a 3rd surgery to scoop away the tissue that lacked blood supply and the dead skin etc. So the tram flap didn't work out so well. All of it was due (my opinion as the Dr is still puzzled) to my Chronic Fatigue and Fibro which I've had over 24 years. So I knew going in I would have a challange healing. HEALING is SLOW. I am facing more reconstruction as the new "breast" is trying to split open to release the tisse that is hard and dead. I have refused to take any of the 5 year anti cancer meds since I have seen women mimic the symptoms of Fibro/CFIDS when on those drugs. It is a crap shoot and I already have CFS/FMS and certainly don't need more of thiose symptoms. I'm 62 and will take the "risk". I went for 6 months to the Fibromyalgia and Fatigue Center in Las Vegas with wonderful results. I lost 70 poinds by being on the proper meds and supplements. I have more vigo,r less pain and more clarity. I was a huge mess when I started treatments. Alas, I had to stop due to breast cancer surgery and am waiting to heal enough after the next surgeries to go back into Fibro treatment. These clinics are based on the book by Dr Jacob Teitlebaum "From Fatigued to Fantastic". This book rocked my world and has given me my life back. We can survice breast cancer and Fibro...keep on imagining perfect health....Bless bless
Jan 8, 2012 11:05AM katecallahan1 wrote:
Hello Ladies. I've had fibro fo 15 years and was diagnosed 4/1/11 with IL and DBC <5 cm, stage II, lumpectomy and radiation 2+ nodes. a Johns Hopkins study has determined that women with 'well behaved' tumors can forgo chemo so I did. Had 30 rounds of radiation.
the lumpectomy surgery went badly. I had gangrene at the site where the biopsy was done before going in, then got MRSA five days after surgery. I had to spend two and a half months with a vacuum device attached to my breast to close up the wound (they had to open me up when I got the MRSA). Now I'm on Femara - terrible night sweats - increased Fibro pain.I've been on effexor, neurontin and nortryptaline. I've seen my doctor and dropped the nortryptaline in favor of an antidepressant; pain has not abated but I'm less depressed! I agree that the night sweats are horrible - never a good night's sleep - AND I find that I need a large panty-liner to protect my clothes from all of the fluids that drain out of me - yuk. Sweat, Sweat, Sweat.
Fibro has been part of my life for so long, I just live with it. But now it's worse. I found a site, the name ofwhich i can't remember right now and the woman has breast cancer and fibro and has decided not to take the AI. Here aresome of the supplements. when I find her site at the office, I'll post it:
Get from Swanson's health:
Ultra whole food multi without iron
Ultra SOD antioxidant
Plus Papaya enzyme chewable
tart cherry extract
there's more so I'll let you know. The bottom line is, fibro sucks and cancer sucks more, so we have to deal with it. My plan, if I can handle it, is to start this woman's regimen and slowly come off of the neurontin and effexor, excercise EVERY day for at least 20 minutes (i ride a bike so there's less impact) and drink plenty of clean (not tap) water and GREEN veggies. Avoid anything white, including dairy. When you're healing, make sure you eat plenty of protein. I'm pushing 60 and when I retire, I don't want to rely on getting prescriptions...with the changes in medicare, we may very well be SOL and I don't want to take any chances.
So girls, I'm thrilled I found this site. We are sufferers United!! I try to think of myself as Captain Dan in Forrest Gump at the top the mast yelling "comon'! bring me all you've got"!!!!!!! We've gotten this far girls, let's fight the good fight with class and determination!
Jan 8, 2012 11:14AM katecallahan1 wrote:
OOPS. I have IDC too. AND I failed to mention that I'm staying on the femara, despite the horrible side effects which for me include added pain, anxiety and sweating, sweating, sweating.
Jan 8, 2012 11:17AM katecallahan1 wrote:
Oh! ALL OF YOU should get your vitamin D levels checked. Women with Fibro tend to have very low vitamin D levels. Get a vitamin D script from your doc and take it once a week. It diminishes the pain considerably.
Jul 5, 2012 11:33AM parashi wrote:
Have suffered with fibro. for 15 years..severe case..now In. lob. Cancer...been on pain meds for 15 years...first visit to onocologist went as suspected...sooo painful and she does not even believe in fibromyalgia....worried about the cancer and the pain that im in for. Also worried about all these delays (no insurance)...
Sep 6, 2014 02:42PM Jewellzz wrote:
I've just finished my second bc surgery. In between them I found an article and traced the info to a reputable medical journal. Bottom line is although we are asleep and don't know about the pain, the pain signals are still going through the central nervous system and the brain. My surgeon treated me as if I was awake even though I was asleep. She used local anesthetic at the incision, Lydocaine cream was given to me to put on before I went to the hospital to numb my breast for the sentinel node injection. I purchased a soft collar to wear in surgery and the anesthesiologist cooperated with most of the suggestions. After my first surgery (lumpectomy) I was fine for a week or so and then the fibro flared and I was bedridden for days. I'm only 4 days out from the 2nd surgery. I'm interested to see if the fibro flares as badly. I'll post again. Meanwhile here is the link.
Apr 10, 2016 01:43AM NicciJ wrote:
Awe, just found this thread and nobody here!?!?
Apr 26, 2017 01:48AM Kmd212 wrote:
I am wondering kunda the same thing I just found out I have breast cancer. My Fibro has been interfering with my life. I had surgery in 2012 on my left foot and hand. I did not heal rt. It took months longer and I didn't ever get the feeling back in the outside of my foot till recently. U now have nuerapathy too. Totally sucks now they want to cut off my breast and pump poison into my body. Anyone who can help me survive tgis please help. Thanks Kim
Apr 26, 2017 08:06AM dtad wrote:
Hi everyone. I also have CFS, fibromyalgia and an autoimmune peripheral neuropathy. My QOL has been severely compromised for 15 years. I was diagnosed with BC 2 years ago. I have refused anti hormone therapy due to pre existing conditions. No one really seems to understand, but I know you guys do!
Jun 1, 2017 12:29PM janetanne wrote:
BC was diagnosed in 3/2002, with Mastecomy, then chem, radiation, just turned 61! In 2005, it was 5 tumors on my spine & 2 on my right pelvic bone. Then 2011, It showed up in my lungs & bones, trying many different chemise, including the chemo pills, Afinitorworked for over 1 year! Then Ibrnace had trrible side effect. I stopped.Recovering from all these drugs and ups & down, is taking a long time
Having had CFS & Fibromyalgia for most of my adult life. I am just really taking a good look at the aching in my shoulders is Fibro. I have periodically tried physical therapy, but I get so tired from this. Now I am trying to do the exercises at home.( Poorly, but then I forgot!) Happily I have been getting IgG Immune infusion every 3 weeks, from a long standing Immune problem that pre-dates the cancer by many years. Forgeting to think about the other diagnosis in my life happens more than I would like. Bottom line is that I can grown crazy trying to figure out what is causing the current discomfort, fatigue, achs & pains. O Yes! It is Osteoarthritis that has caused most of my pain. Now Most bones have at least one cancer spot, the lungs have many with a few that are growining slowly. Fatigue, muscles spasms, weakness, etc is my life. Waiting for the when all these tumors put me in that LAST THREE MONTHS is not easy. It feels like I have been living 3 montht at a time, test to test, for the past 5 1/2 years. Most of the time I am doing possitive things, with occasional reality checks showing up.
What I am missing most is people who are in the supposed "Chronic Cancer" stage. Now it is time to decide to stop treatment so I can live drug free and get back in touch with old friends, maybe even volunteer! No more isolation from the DRUGS!
PS: am taking a Cancer VACATION! Started May 24! There are just a few doctor visits this mont, and I will continue with my Immune treatment, and a little massage.
Love to you all for sharing. it never gets old.
Jul 25, 2018 02:48PM Hopesings wrote:
I am a 65 year old woman and have had fibromyalgia for over 30 years. January of this year of 2018, I was diagnosed with invasive breast cancer. There is no cancer in my family, and I have taken steps throughout my life to eat healthy, do not smoke, drink alcohol or abuse my body with drugs or other substances. I don't even take medications except the occasional antibiotic for past throat and sinus infections. The borders were large and clean, as all the tumors were in the center of my breast, not close to the chest wall, or the skin/nipple area. There was one tumor that was invasive, Stage 2 because of it's size, and two that were DCIS. The surgeon said it was the best case scenario for breast cancer, but I had to have a mastectomy due to the number of cancers. The mastectomy was done, with no complications. Gratefully, the cancer had not spread to the lymph nodes. Given my final test results of a low chance of reoccurrence, there was no need for radiation, chemotherapy or any other treatment. I was given a clean bill of health of no cancer and sent home to recover. I did have some lymphedema, which has been successfully treated with therapy. My biggest complaint is the pain I have in my ribs, shoulder and arm of the surgery side. That, along with all over fibromyalgia pain, I am exhausted and feeling quite emotional from the last few months. I know I should be grateful that I came out of this without painful treatments, but feel absolutely spent physically with this pain. Is this normal for being only 4 months post surgery and how much time should I expect to give myself for recovery?
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