I have fibromyalgia....would you still do recon?

Kimberchick

I was wondering if anyone out there has had recon while having fibromyalgia/chronic fatigue symdrome?  I have had fibro/CFS for 30 years and recent Lyme diagnosis/treatment.  I had a bilateral mastectomy two months ago and am now considering recon.  My natural medicine doctor does not recommend implants because she has seen too many people with chronic fatigue/fibro get much worse with implants and even when the implants are taken out, they remain very sick.  Another dr I have talked to is a bit concerned with the amount of pain I may experience in the pectoral muscles, neck and back after recon.  Or if I will be able to tolerate the pain from the expanders.

 Could anyone comment if they have any information on how similar women have coped with recon?  Thanks! 

Mantra

I have had fibromyalgia for almost 30 years. In my case, my fibro is well controlled by medications and I really have very little pain except when touched. I was very concerned that the implants might cause things to flare up and that I may end up have excruciating pain like I did for so many years.

I decided to have the surgery but knew I'd kick myself if they did cause issues for me. So far the implants have not caused any problems. Fingers crossed. 

DeeLJ

I've had fibro for almost 20 years, but I am one of the luckier ones in that it only comes in flare ups now and is not continuous like it was for so long, so I've managed with OTC pain relievers only. I am having mast with TE placed in two weeks. I'm not gonna worry about the fibro. It will probably flare a little, but I will have pain meds if I need them and flexeril, which does help a lot sometimes. (Ive taken it occasionally for back spasms).

GointoCarolina

I have had fibro for 20 years.I had tissue expanders placed,not for implants but because I was having fat grafting.I had the expanders removed after only three weeks.The pain increased each day.My PS felt the fibro contributed to the pain.The last week I was on pain meds and Flexeril.I have taken Flexeril off and on for years and one at bedtime usually helped me and I would still feel hung over the next day.While the TE's were in, I could barely wait for my next dose,every six hours.I do seem to have a low pain thresh hold,but this was constant and exhausting.I have been told that Valium really can help with TE discomfort,but I did not want to go around in a fog for several weeks.The minute I woke up from the removal surgery,I felt better.I am still going to have the fat grafting,I will have to use the Brava.Fat grafting and flap surgery are alternatives to implants.There is lots of info here about both.

Livsmom

I have had fibro fo about 4 years with terrible fatigue and pain but have learned to adjust somewhat to it. I am on disability for my fibro was an RN for 19 years I have had cancer 3 times starting as a teenager but I decided to try the TE and implant route for recon to see how it goes I am 17 days post op and so far so good it hasn't been easy because I am sensitive to meds and have only taken Tylenol since being released 1 day after surgery. I already had one breast removed 10 yrs ago so this cancer was in my right breast and I did immediate recon with expander placement the mastectomy side has been really bruised and sore but the other side has done great. I think the only way to know is to try and I am 44 with a 6 yr old daughter that wants her mommy to look normal so we won't have to think about the cancer. I think it is a personal choice but since you are healed up from the MX I think it would be easier because I wish now I would have let my mastectomy heal first it's a lot of trauma at once. Also I did have some muscle spasms for a week or so but found that flexeril worked fine for me at night but had to half the dose.

barbe1958

My FM is the number one reason why I didn't go for recon!! Read some more of the threads with women getting their implants removed. I just couldn't put my body through it. Having said that, I am 53 and haven't 'needed' my breasts in the last 3 years. It IS such a personal choice, but it is also such a good question you have asked!

Good luck on your decision - I knew what mine was.

blondie45

I have fibro and did the DIEP, have done stage 1 and 2 now. It was not easy that is for sure but it was doable.

msphil

Hello, I didn,t have fibromyalgia till after I finished my cancer treatments, I now have ALL the symptoms your dr described since I had reconstruction surgery, I had the surgery immediately after L mastectomy, with expander put in, after a short while the expander hardened and my husband rushed me to the ER and they admitted me with very high fever and it needed to come out. I was in the hospital for about five days getting antibotics, since then I use prothesis and I love it, but now fibromyalgia, fatigue.  But I,m 17 yrs Cancer Free (Praise GOD) so I endure it. Diag 9/1993,IDC,stage 2, 3 nodes, tamoxifen 5yrs.  God Bless.  msphil 

bruthd52

I also have fibro for 25 yrs and also DCIS.  I've had 3 lumpectomies which did not get me clean margins and now face a mx.  I plan to have immediate DIEP reconstruction when I have the mx.  So far I have not been discouraged from this.  I know there will initially be a lot of pain but hope that using my own tissue will take care of the fear of pain from implants.  Not many PS do DIEP and I have to travel over 2 hours to see the surgeon and PS but feel it will be worth it.  Even at 60 I want my body in tact.  I work, lead an active life .  I've also had Lyme (4 yrs ago) and it was brutal.  So far, the FMS has not reared it's ugly head other than the regular daily pain. 

bruthd52

Blondie,    I have fibro, had severl unsuccesssful lumpectomies and will now need a mx.  I plan to have DIEP but am pretty nervous.   Would you  please email me as to what the most difficult part of post op was.   I have pain meds for the fibro including flexeril but when it's really bad, all it does is dope me up.  So far, because I'm presently not working, the fibro hasn't been too bad.  I'd appreciate any info you can give me.  I'm about 8-10 yrs older than you but very active.   Thanks.

CathyinSpring

I haven't had any additional problems with my Fibro since my reconstruction, and I'm so thankful that I did the recon. My RA, however has gotten worse, but that's from taking Arimidex and Femara. I'm sure you'll make the best decision for yourself! God bless!

barbe1958

I envy those of you who are 'active'!!! My FM has had me bed ridden on occasion, I have an electric scooter in the garage, a walker in the trunk and a cane always in the front seat of the car. I've had a handicapped license plate for 3 years!!

AnneW

I don't have FM. But I did implants first. They put so much pressure on my ribcage that my thoracic spine wouldn't move, and my shoulders spasmed a lot. Forget about what the silicone/foreign body may do--it's the changes your skeleton and muscles go through, and you're already compromised there.

If you feel that reconstruction is what you really want/need, I would go to a really good flap surgeon. Don't get one who says they might have to do a free TRAM. That takes muscle out. Get a surgeon who NEVER uses muscle tissue.

Best of luck. I've seen many, many women with FM. There's such a broad continuum of ability/disability with this disease. From being active to control the pain versus taking huge doses of narcotics just to be able to function.

barbe1958

And I'm one of the ones that takes HUGE amounts of narcotics just to be able to get out of bed. I'm off on short-term disability and my doc doesn't think I'll be able to return to work! Yikes!! I'm already driving with so many meds on board I'm illegal, but I don't get stoned. I''m on Hydromorphone,  Torredol, Oxycontin and Celebrex, just 4 of the 17 pills I take a day! (other health issues....sigh)

Kimberchick

AnneW, I do not take any medicines to control my FM pain (other than Advil) and am able to be fairly active.  I do have alot of neck, back and shoulder discomfort/pain.  I was wondering if you could describe what you went through with the implants?  Were the implants after a MX, so they went behind the pectoral muscles?  What do you mean your thoracic spine wouldn't move and shoulders spasmed?  Also, I didn't know there were flap surgeons that didn't take any muscle?

AnneW

Kimberchick,

I had the implants placed behind my pec muscles after the bilateral mastectomies. They rested on my rib cage (I'm thin) and sat kind of high. I just couldn't get any flexibility in my thoracic spine, and the chiro couldn't manipulate it to move. Once they came out, I was able--slowly--to regain movement. So, when my mid back wasn't flexible, my upper back and shoulder areas bore the burden. It was always inflamed, knotted up, etc.

Most flap surgeons do the muscle-based procedures like Lat Flaps (from upper back) or TRAM (from abdomen.) Vascular flap surgeons ONLY take the fat and blood vessels. They're so good at what they do that they don't have to fall back on taking muscle when they can't quite get the flap to transplant smoothly. Look up the threads on DIEP and SGAP--those are vascular flaps.

Barbe, I had no idea your FM was so bad. I'm glad you've found a cocktail that helps you function, and a doctor who is willing to prescribe like that. And contrary to what everyone else believes, you DON'T get stoned on high levels of meds when taken for a true pain syndrome. Yes, you build up a tolerance, but that allows you to function.

bruthd52

Anne W   Thanks for your really kind words.  I've had fibro for so many years I don't remember what it was like before I got it.  There have been times when I've had to take really strong drugs to just be able to sleep or get through the day.  Many people are very unsympathetic to it and act as if because you "look" normal you're just making it up.   Now, after being diagnosed with BC 3 months ago the same people are understanding and kind.   It's because they really relate to cancer and are terrified it might happen to them.   Those of you with fibro who are taking antidepressants, as I am, to help control the anxiety and pain,  I just read a  long article which dismisses the rumor that there's a link between BC and antidepressants.  Like we need anything else to worry about.  I go in another 2 days to mett with my surgeon who is a  oncoplastic surgeon to discuss what to do next after 3 lumpectomies with dirty margins.  Will also meet with a PC about having an MX due to extensive DCIS.   None of us need to blame ourselves for having BC  fibro or taking the medication we need to walk through life.   I take meds when I need them and also do yoga.   Blessings to you.

barbe1958

I'm hoping to start yoga or tai chi as soon as I can join the fitness club where I live. I need a couple more dollars first, but it will be soon.

I remember when my FM would 'flare' so there actually were months when I was pain free! Now, due to stress, I am in a constant flare. If I get nauseated with my pain meds, I know I'm coming out of my flare and can cut down. It's my body's way of letting me know I don't need the pain meds! I remember when I used to take the narcotic equivalent of 25 Percocets a day! That used to work, but doesn't anymore. Now I have to stay on top of the pain by taking meds every single day and using the Oxycontin for break-through pain.

I wonder if I'll ever come out of this, or if that's what my doc meant. Going back to work may exacerbate the situation right back to it's worst. Or more.....

GointoCarolina

Barbe1958,Do you do any kind of regular gentle exercise?Besides the fibro, I lost 35 pounds during chemo and my muscle mass took a beating resulting in  tremendous pain.A few weeks ago I started riding my stationery bike and doing a Leslie Sansone walking video.Right now I can ride the bike for 15 minutes (but sure couldn't when I started!)and the video is for a one mile walk.I am trying to slowly work up to longer on the bike and a two mile walk.I have special music on my Ipod while I am exercising,music is important therapy for me.I notice when I miss the exercise,I am in more pain.I also take melatonin and valerian,they both promote sleep, the valerian is also a mild muscle relaxer.The melatonin seems to help me deal with stress,if I don't take it I start to feel edgy.Just a few of the things that work for me and may help you too.

barbe1958

Panda, I am walking. We recently bought Crocs that have a soft lining so I don't sweat in them, and they have been my saving grace!! The shock absorber capability of them is truly amazing!!! My knees are so much better (I have horrendous arthritis all over my body) and I can walk further each time we go out. When I was working full time, I was exhausted when I got home and we never went for walks. Now I am making sure I take the time at least once a day to walk. It is truly amazing the difference the Crocs have made!!!

Besides the arthritis I have pulmonary issues as well, so I have trouble keeping my wind. Walking is the only thing I can do. When I tried back in April, I got half way around a trail and my DH had to go home and get the car and come back and get me!! Now I can walk it with ease. My foot starts to drop and drag further along each day so I know I'm improving.

I'm taking this time off to truly try to get better. If not better, at least cut down on my pain meds. I think I'm doing excellent so far and am very proud of myself! Normally, I'd just want to curl up in bed and sleep. Though I am sleeping about 12 hours+ a night, at least I'm alert during the day and not depressed.

Baby steps....

Anonymous

I don't have FM, but I had a similar experience to what Anne describes. First, I had a very painful expansion. Then after the permanent implants were in, my back, neck and shoulders became tight as a drum. My shoulders were one big knot. I had spasms in my pectoral muscles. I developed other issues, such as capsular contracture and one of the implants poked through the muscle. I lived with a lot of pain over the past two years and took an antidepressant and pain meds. Finally gave up and this April was totally deconstructed and had implants removed. I feel like my old self. I can finally take a full breath again - what a joy that is!



When you deconstruct, it becomes a lot more apparent how disruptive the implant process is to the body's natural structure. It's not a "simple surgery" like PSs make it out to be. And if you are thinking of the process as something to "try", give it some more thought. I was just in for one set and planned to remove when they expired since I'd be over 60. If I knew then what I know now about the structural changes, I never would have done it.

BJB1

I have mild fibro - mostly in my lower extremeties and do not have CFS.  I get tic bites very often, red ring too, but do not have a diagnosis for Lyme.  Thank goodness.  I had no problem with recon after DIEP.  For me, the trick was developing a stronger core before surgery.  I exercised regularly because of the fibro and was able to walk w/o pain by the day after surgery.  Never needed a pain med until 2 weeks later. And then it was because of the drain openings.  No big deal.

I am a 38 B.  A larger size might cause more discomfort?

I would be more concerned with lymphedema than anything else.

barbe1958

The risk of LE is the same whether you reconstruct or not. I have LE and didn't reconstruct.

greytcruise

Sorry you have fibro now.  I had fibro for several years prior to masectomy, since I have not had any fibro flares.  My pain would last for 3-5 days and I would be bed ridden and throwing up, it was aweful.  Flexeril was the only drug I did not have side effects with, but nothing worked.  I now have neuropathy and would rather have this than fibro, still cannot tolerate any of the drugs for side effects.  I hope your fibro will get better.

GretaW2011

This is late to be of use as a reply but I had a bilateral mastectomy followed by implant reconstruction in 2011. Shortly thereafter I developed chronic pectoral pain, phantom breast pain and subsequently fibromyalgia. My intuition tells me that the fibromyalgia is related to the implant reconstruction. Ironically I feel like a cancer survivor and a reconstruction victim. I consider De-construction frequently but can't bring myself to do it. I've learned that approximately half of us with under the pec reconstruction develop chronic pain. I'd give anything to be cancer free and have my undamaged pectoral muscle and otherwise well body back. I remain deeply ambivalent regarding my reconstruction to this day. A cancer survivor #WreckedByReconstruction

Moderators

Dear GretaW2011, Welcome and thank you for posting your story. It sounds like you have been through quite a lot. We are sorry for that and grateful that you chose to post in our community. We do notice that this particular topic has not seen recent activity. You may want to start a new topic to gain more attention. Let us know if you need help. The Mods