... my orthopedic, my rheumatologist and even my son's rheumatologist say I will definitely have a major fibromyalgia flare up from the surgery. I am so scared and have been holding off the surgery for a year now. My pain doctor has been doing minor procedures to try and help keep the pain bearable. At this point things aren't helping as well and I know I need to have the surgery eventually. If you have gone through surgery and had a flare up from it, how bad was it? Did you regret having the surgery? If I know how bad it would be I can prepare for it. I think I'm scared because I don't know what to expect
Has anyone had a fibromyalgia flare after having major surgery? I need to have scoliosis surgery and
Question posted by DancnDar on 26 July 2016
Last updated on 6 April 2017 by Barbara933
5 Answers
Barbara933
6 April 2017
I had 2 knee replacements, and honestly, there were probably flares, but the pain from the knees before the surgery was making the fibro worse. After having the knee surgery I felt SO much better. Much of my pain meds. were decreased. I have found rest one of the biggest factors in feeling better. Is your back causing you to be unable to sleep? Is it good rest? Does your back hurt all the time, as in each movement, rest, walking, sleeping? If so, what do you have to loose?
John McAvoy
27 July 2016
Get a second opinion before surgery. I had low back fusion and now have "failed back surgery syndrome" and now fibromyalgia. Starting Lyrica, 100mg, TID, hoping it works because sometimes it really hurts. Think twice about surgery, once it's done it cannot be undone. Good luck my friend.
DancnDar
27 July 2016
Thank you for your comment. It's good to get from people who did good and those who didn't. I've had a 2nd opinion. I'm not having a fusion. They are putting rods on my spine to straighten it. This is usually a successful surgery. I'm skat on Lyrica and Savella for the Fibromyalgia. I was thinking of asking my rheumatologist to put me back on the highest dose before surgery. Maybe this will help.
John McAvoy
28 July 2016
If you have a good doctor and you trust their opinions then go for it. It sounds like you do! Good luck and keep chatting if you can, we'all will be here.
DancnDar
28 July 2016
Thank you
Barbara933
30 July 2016
I have fibromyalgia, Sjögren's Syndrome, Achalasia, as well as a few others. I needed knee replacement surgery, but put it off. My pain was out of control, I was depressed, and probably no fun to be around! The surgeries... both knees was very successful and my pain relief tremendous. I also had laparospic surgery and once again the results out weighed any flares. I have to admit I don't think I have ever been in remission, so other than periods of exhaustion, low energy, and brain fog can't say I've had lots of flare.
Ms K
6 April 2017
I am 73 a female. I just had cancer breast surgery a wk ago. I have a bad back (multiple severe car accidents) including a broken tailbone. The first few days aft surgery went very well - walked in the neighborhood - body pain reduced... This morning all hell broke loose - spine pain, hip pain - bending from the waist requires a silent scream... Don't know how to sort it out. How long does the anesthesia stay in your body? It was heaven day 1 day2 and half of day three. All is back and then some today. Fibro is little understood by anyone who doesn't have it - same with spine pain of 20 plus years!!!
John McAvoy
27 July 2016
I had low back surgery 2 years ago. Now I have "failed back surgery syndrome" one doctor says, other says "bad back and nothing they can do", now "fibromyalgia". At least in Maine I can use medical marijuana for it.
Windchimes123
27 July 2016
As you get older, surgery is harder to tolerate and involves more risks. Let's face it... We aren't spring chickens anymore !
I think I'm qualified to help you with your question.
I'm presently in Rochester, Min after undergoing major abdominal surgery leaving me with my worst nightmare... an ileostomy. It was totally a phobia.
I was more afraid of the fibro pain than the surgical pain. I had abdominal surgery 6 mo ago at a community hospital. I don't remember the post-op pain but the horrific fibro pain.
This time I went to Mayo where I had more confidence with the resources available of a team approach. I was reassured pain management would control whatever pain I had. I also went to their fibro neurologist to get a definitive diagnosis on my chronic pain. He was wonderful! He spent over an hour with me (after another hour by his assistant neurologist) confirming I had severe fibro based on physical exam and testing. He looked at me and promised it can be controlled. He was a sufferer of chronic pain himself who is now able to do marathons! He gave me hope! He told me my opioids were doing more harm than good.
I had my surgery 3 weeks ago. Pain management did what they promised and kept me comfortable plus made sure I slept which is unusual for me. Pain control and sleeping kept the fibro from being an issue.
It helped me to tell them I needed to give 2 pain levels. One for the surgical and the second for my fibro. It made everything clearer to everyone as to my progress.
I met with a variety of specialists after discharge. Each pointed out the opioids being a problem.
Tomorrow I'm to meet with physical therapy who specializes in fibro. I'm terribly deconditioned and the home therapists are giving me exercises. However, the neurologist pointed out the fibro Pt is going to take it easier but my recovery is going to be extensive and longer but I have to stay with it at home daily.
Three days ago I started coming off my opioids. The docs don't know it yet but I have the confidence and they empowered me.
If it helps, the surgery was 6-30 and three weeks later I'm coming off of years of opioids !
Lol... I guess I should be under supervision but when I decide to do something I do it!
Don't have the surgery until you feel comfortable that your needs will be met. It's very important to know they have your back covered so all you have to do is recover. Make sure when the therapy gets you ambulating that they are knowledgeable in regards to fibro recovery.
"Normal" recovery is not normal for you because over-exertion may start a flare.
Best of luck and our prayers are with you.
Be positive, keep your sense of humor and focus on your mental strength over this troublesome syndrome.
DancnDar
27 July 2016
Thank you. When I have the surgery it will be at one of the top hospitals in New York City. (this is were the Yankees go) My husband works there and is friends with the doc who is head if neuro-radiology. He recommended this doctor. I totally trust him. When I meet with the orthopedic I will ask about the things you have pointed out to me. I am hoping after this surgery to come off opiods. My primary pain right now is my back. I really appreciate your response. It has me hopeful.
sheila7281
27 July 2016
Have you ever tried Lidoderm patches. I use 2 each night to my lower back. 12 hours off and 12 hours off. It does not take my pain away but helps lower my pain so I can sleep. My back is also an issue and like many others I take other meds to manage my pain. I like the patch because it is not an opioid. I too hope to come off opioids. I agree they can make things worse but for chronic suffers it might be the only thing at this time that helps them to function daily. The implant for my OAB is helping. I was also told if this helps my interstitial cystitis an OAB it is possible to try this for my back pain. It would require another lead. But one step at a time. Sounds like you have good doctors and to me that is 1/2 the battle. I am fortunate my doctors also consider my fibro.I always advise never give up on oneself and keep searching for anything to help the pain and come off the opioids.
Sheila
Windchimes123
28 July 2016
I found the main peace of mind is to feel like you have control.
Let them know you know your body,triggers,relief, etc. you will be happy to submit this info to them pre-op.
You need to feel like they are taking you seriously and won't do anything without your approval.
Get it all straightened out pre-op because after surgery you can't trust yourself for a few days to know what is right for you.
There is a saying for people going into the pain profession :
Pain is what the patient says it is !
I hope that phrase is still the cornerstone of education.
You sound confident in the hospital and the doctors. Very good.
After you get guarantees that you are in charge of your body (of course, you will be open to all suggestions) just do it !
The time will never be perfect and sometimes over-thinking can add to your problems.
Good luck and keep us informed please.
DancnDar
28 July 2016
Sheila I have lidocaine ointment that I can put on up to 4 times a day. This way no matter where I have pain I can put it on.
sheila7281
27 July 2016
You can have a flare. Also could take little longer to heal do to pain. I have had surgery but I can not say it was not worth it because of the pain. Talk with pain management doctor so he can adjust what you take after surgery. For me it just meant dealing with pain a little longer than the average person. Mostly because I already take pain medication so I needed the dosage changed for a short time until the pain subsided.
Do not be afraid of the surgery if it will help you. Never give up if it will help lower your pain.
Good luck.
DancnDar
27 July 2016
Thank you. I have had other surgeries but this one involves a year recovery(without fibro) and my orthopedic (who comes highly recommended) is a little hesitant about what the fibromyalgia will do to me, but will do the surgery if I want it. This is the first surgery where the doctor was worried about the recovery because of the fibromyalgia.
sheila7281
27 July 2016
I had a 6 month recovery from shoulder surgery. Pain management gave me different pain med to help with the fibro flare. Also fibro can be secondary to the pain from surgery. Mostly the doctor's agree the initial pain can take a little to fade but it does settle back down. I also just did part one of an implant which required surgery. My whole body did hurt but with taking little more pain med and rest it was manageable. Do you have pain management doctor? Do not over do and rest helps a lot. If you do not have pain management doctor try seeing one first. This wY making pain protocol. I once had a doctor who removed my ovaries. I was having fibro flare but she insisted I was fine. I went to my pain doctor and he wrote me a note to be out few days longer. I was having trouble walking and the fibro was flared. The few extra days if rest made the difference. If you have a way to have less pain I wish you luck!! Year of recovery is a long time but consider the end result and talk to another doctor you trust. Seek a second opinion if needed. That never hurts.
Sheila
DancnDar
27 July 2016
Thank you so much. I do have a pain management doctor and he is good to me. I feel better about making the decision. Next I have to see everyone's schedules to make sure I have help at home afterwards. I think what is making me feel like this is I have a friend who I watched recover from this surgery when we were 14 and it wasn't easy. Now I am significantly older so I won't heal as fast and add the fibromyalgia in the mix and I am scared. Thank you for helping me I do appreciate it.
sheila7281
27 July 2016
No problem. You might be surprised and heal very well. Everyone is different so try not comparing yourself to others.
Shelia
DancnDar
27 July 2016
Thanks. I'm not comparing myself. It is the way the doctors said I will have a major flare up that has me concerned. These are doctors I have known and trust. The orthopedic is the top of her field in a top hospital and she is concerned about the fibromyalgia. She did she'll do the surgery if I want it but wanted me to know what I am in for.
sheila7281
27 July 2016
I am sorry if you thought I was saying you were complaining. Did not mean it the way it sounds. All of us that fight chronic pain have to do what is best for yourselves. Your fighting to feel better and your attitude is commendable. I really home you find the right answer. I have had fibro for over 30 years and every day had its challenges. You are lucky to have a doctor that is looking out for you. I also have caring doctors. Some people do not! Let us know what you decide.
Sheila
DancnDar
27 July 2016
I don't think you were complaint. Sorry if I came off that way. I myself have had for over 20 years and it did take a while to find the right doctor and get the right diagnosis. I appreciate all you said. Thank you.
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pain, fibromyalgia, scoliosis, surgery, rheumatology, orthopedics
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