Sunday, January 17, 2010

Fibromyalgia Syndrome: Outcome Following Total Knee Replacement Not As Good As Most Other Patient Groups


According to Wikipedia, fibromyalgia is characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure.[1] Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other core symptoms include debilitating fatigue, sleep disturbance, and joint stiffness.

A Mayo Clinic study of 141 Total Knee Replacements done in patients with Fibromyalgia Syndrome concluded that nearly half of the patients reported continued knee pain after replacement surgery (much higher than most other patient groups) and more patients in the study had trouble regaining knee motion. Total Knee Replacement surgery did provide improvements in pain compared to preop levels.

The conclusion is that there is a high prevalance of continued pain and stiffness in Fibromyalgia patients undergoing Total Knee Replacement surgery. The Orthopedic Surgeon should counsel these patients pre-operatively so this sub group of people can make an informed choice as to whether to have this surgery and to align expectations with reality.

26 comments:

Gee said...

After being diagnosed wih FM in '99, I now find myself in need of a total knee replacement at 59 yrs. old. With my date of surgery set, it suddenly occurred to me how I was going to manage post-operatively during rehab with my FM in that I frequently wind up needing cortisone injections in sites due to weight transfer to other parts of my body because of my knee. I was worried how this might impact my recovery. I asked my surgeon about this and how many other patients he'd done full knee replacements for who suffer with FM and he responded none. I cancelled surgery for fear this could pose a huge problem. I am still in acute pain and have no idea what to do. Any suggestions or ideas? Thank you.

Anonymous said...

I have fibromyalgia and neuropathic pain in my legs. I had a knee replacement on November 3rd of this year. The pain was almost unbearable after the surgery. I went back to work in 29 days. I am now 6 weeks post op and still having the awful fibro symptoms but the knee is great. I have a continually red leg, without swelling. The incision site hurts, but I have pretty good range of motion. I still have to have injections in my other knee, which also makes the fibro symptoms better. Go ahead with the surgery. But be prepared for the pain. The pain killers they give you after surgery helped. I had no fibro symptoms until I quit taking the hydrocodones and am going in on the 6th of January for a shot in the other knee which for sur ewill help the FM syptoms.

Anonymous said...

I have had fibromyalgia for 30 years, and about five years ago it became apparent that I was going to have to have knee replacement surgery. I was walking bone-on-bone on that knee by that time and I had to resign myself to the fact that I had only two choices, knee replacement surgery or life in a wheel chair. It was that bad. I actually didn't give the fibromyalgia much thought before having the surgery and after surgery I figured that everyone had as much pain as I did, but now, 32 months after the surgery, I'm not so sure. Anyone with that kind of surgery is in tremendous pain at first, that goes without saying, but I've never heard any other knee replacement patient describe their pain the way I do. I swear if the pain around that joint had been illuminated my knee would have glowed in the dark and radiated intense light out for at least eight inches.. I could barely tolerate the therapy we all have to go through, and this "glowing" kind of pain lasted for at least 18 months before starting to back off and eventually disappear. I can't fully describe my pain except to say I don't know anyone else who took as long as I did to get past the debilitating part of the pain.

I thought I was just being a big baby about the pain at the time, but I really don't think so now that I'm back to "normal" fibromyalgia joint pain around that knee. I really do think that something about cutting into the muscle and/or bone is different with people who have fibromyalgia, amplified pain or increased sensitivity or SOMETHING. I've had other surgeries since I was first diagnosed with fibromyalgia, but none of them cut so deeply into muscle or cut into a bone. The pain was absolutely excruciating those first 18 months, and I've never gotten back the full extension of my knee because I couldn‘t manage the therapy very well, and now my orthopedic surgeon wants to go back in and remove scar tissue so I can go back through therapy again to straighten the joint.

As bad as the pain after my surgery was, I'm going to go through the scar removal surgery in the near future because I'm going to have to knee replacement surgery on the other knee in another few years, and I have to have the first knee fully functioning before having the other knee done, and yes, as bad as the pain in the first knee was, I'm definitely going to have the second knee done when the time comes. The anticipated pain of walking bone-on-bone on the second knee for the rest of my life far outweighs the now expected painful recovery I will have to go through again.

I was 61 when I had the first knee done, and one of the things I had in mind was that my health at the time was otherwise good. The older we get the more likely it is that other maladies will arise so I wouldn't recommend that anyone put off a necessary surgery. Those first 18 months after my surgery were horrible, but I would still be walking bone-on-bone without the surgery and that is an even more horrifying thought.

I'm sorry I can't paint a rosier picture of joint replacement with fibromyalgia, but this is all I have to go on at the time. It was something that had to be done, and I will do it again because the alternative is worse.

I walked on that bad knee for over a year after my doctor first told me I was going to have to have it because I wasn't ready to think about it. I think that kind of thinking is true for anyone about any kind of surgery, denial and worry and then acceptance. Don't do this kind surgery because someone else thinks you should. Do it when YOU know it is what you have to do.

Phyllis, Ft Wayne, IN said...

I had total knee replacement 3 years ago, and I have FB, I am in constant pain on a daily basis. Sometimes it is worse than before I had the surgery..I wish I had never had it done..I am not trying to influence anyone, or scare anyone... Please be sure that you talk to your Dr about your condition prior to surgery.

COTAgreen said...

I just had a total knee replacement in March 2011. There are times I can hardly think because of the pain. Unfortunately I did not do the research of surgery and fibro. I have an aggressive surgeon who insisted on cranking up the CPM machine to 110 degrees of flexion the day after surgery. I have been in the ER, called the ortho daily, screamed through the cpm exercises and pleaded with the physical therapist. This is the worst pain I have ever been through. I am no stranger to pain but this has been horrible. Ouch.

fibromyalgia said...

Fibromyalgia syndrome is a common and chronic disorder characterized by widespread muscle pain, fatigue, and multiple tender points. The word fibromyalgia comes from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia).

Anonymous said...

I have suffered with fibromyalgia for many years. I have just dealth with it, since I cannot take over the counter pain meds. I never thought about not haveing total knee replacements in both knees because of the terrible pain I had for over two years. Had bone on bone in both knees. I did the therapy and did really well to s point. I am never without pain around my knees. I am having a real flair up today. I hurt all over,but my knees have put me down this afternoon. I guess I would do the knee surgery if I was going back because I can get around better, I just don't know if I will ever not have this awful pain. It like trading one bad pain for another.
Be warned if you are contemplating knee replacement surgery.

Lyn said...

I had a TKR 11/2008 and have never been without pain. I finally decided to check about surgery and fibromyalgia. I found this site. It has given me some insight and I appreciate all your comments and truly sympathize. I NEED my other knee done. I, like many of you, didn't want to do it because of the continuing pain of the first surgery but I am in such severe pain, from my knee down to my ankle, as it is bone on bone. I think they have crossed each other even. Small joke! I believe this added severe pain has more effect on the rest of the nerves and has them continually inflamed. I know I am not a big baby but, yes, this continued pain makes you doubt yourself. I have had 7 other surgeries and none have affected me like the knee. I am a healthy 71 year old except for the FM. Thank you for all your comments and my best wishes for some relief from this dreaded malady.

A Fat Vegan said...

I had a double total knee replacement just before Xmas. I think my pain levels are higher than the norm but I am also having fibro flares. I have had almost constant aching in my lower legs and if I don't get on top of the pain it becomes all over aching and severe fatigue.

I am under pressure to reduce the pain meds but am dealing with doctors who seem to ignore the fact that I have fibromyalgia. I don't regret having the op though and also don't regret getting them both done at once.

Anonymous said...

I am sooo happy to find this blog. I wish I had found it before my TKR surgery. I have had Fibro(FM) for nearly 20 years. I did not have a doctor really help me with FM till I tried Lyrica just a few years ago. This drug has helped greatly, yet nothing takes all the pain away.

In relation to the knee- I had a partial Knee Replacement done 14 months ago. Everything went downhill from the beginning. A year later of constant pain and very limited lifestyle, I consulted with two more surgeons who said due to my advanced degenerative disc disease and osteoarthritis, I NEVER should have had a partial Knee Replacement. Only a TOTAL would help me. So 7 weeks ago I went to the new surgeon and they took out the year old partial knee equipment( which is called a Revision)and it is a whole new problem of hammering and chiseling on the knee bones to remove the glued in parts that were meant to stay for 15-20 years. Needless to say, I have been in the worst pain of my life. Now almost two months out and it still is swelling with every PT appointment and with just plane walking.
I say this to warn those to get at least 3 surgeons to be sure you get the right surgery and parts. Also, talk extensively about your FM with the doctor -if he does not believe in FM -walk away. There is no reason for doctors today to not being aware of the extra complication we will suffer due to FM.

I too has bone on bone pain and in daily agony...so yes I traded one kind of pain for another.. I just pray this one will eventualy subside and I can get back into living and not on the sideline.

Marilyn said...

I will behaving TKR within the next couple of months and I'm scared to death. My ortho surgeon realizes I am a chronic pain patient which complicates the surgery he told me I may be on lethal doses of pain meds and will need to work closely with the anesthesiologist. I have been on 20 mg of Oxycontin 3 times a day for the past 5 yrs since I had cervical disc removal and fusion (3 levels). That's when my fibro kicked in full force. The pain in my knee is pretty much unbearable most of the time now. This ismy left knee, which ihad arthroscopic surgery done on it July 3rd with no improvement. My rt knee will need to be replaced also. At 59, I'm just not ready to accept a lifetime of chronic pain and fatigue. Plus it is so unfair to my husband to be stuck with this also.

Marilyn said...

I will behaving TKR within the next couple of months and I'm scared to death. My ortho surgeon realizes I am a chronic pain patient which complicates the surgery he told me I may be on lethal doses of pain meds and will need to work closely with the anesthesiologist. I have been on 20 mg of Oxycontin 3 times a day for the past 5 yrs since I had cervical disc removal and fusion (3 levels). That's when my fibro kicked in full force. The pain in my knee is pretty much unbearable most of the time now. This ismy left knee, which ihad arthroscopic surgery done on it July 3rd with no improvement. My rt knee will need to be replaced also. At 59, I'm just not ready to accept a lifetime of chronic pain and fatigue. Plus it is so unfair to my husband to be stuck with this also.

Anonymous said...

I had TKR in june 2011, had bone on bone at age 51. I was able to take 6 weeks off from work as a case manager but needed much more. Whether it was pain from fibro or from the surgery, lying in bed at night the first couple of weeks was horrid, and I would cry every night. Finally I figured out that a recliner worked a lot better and slept that way for the next 3 months. PT was awful and not so effective, and I have patella compression syndrome. Moving in bed still hurts.
I am better in that I have no pain from walking. However, standing for any period of time, transitions and fast walking are all quite difficult, and carrying heavy items is nearly impossible.

a year later, still puzzled about my lack of recovery, wow was I surprised to then be told that fibro would complicate recovery to this extent. gee, thanks. so I'm back about 70% of pre-surgery-need ability, but I think I've plateaued at that level. I take daily advil but that's about it; any more pain meds and I can't work the next day. If i ever have to get the other knee done, I'm gonna have to go on SSDI if possible as I won't be able to manage a job.

Anonymous said...

First the rant...I had a TKR exactly 1 month ago. The pain was unbelievable! I was bone on bone. Dr. said it was the worst knee of that type OA he had seen. I have been in a wheelchair/bed ridden for approx 9 years and now they expect me to walk! My other knee is also bone on bone! The morphine makes me so hyper I cannot sleep and gives me headaches. They will not prescribe any more pain meds than I am usually on.

I guess my point is as a FM patient my muscles heal twice as slow as a normal. Supposedly FM pts have 2x the nerves as a normal and feel them at least 2x. Why can therapy not keep in mind these things. I've had lots of PT through the years and the ONE therapist I had that understood this took me farther and ultimately farther than any of the others because she did NOT push. Even if it only meant 5 reps of an exercise instead of 15...when I hit pain she switched muscle groups. It was amazing how just a slight change of muscle groups made such a difference. After a few minutes we could return to the previous exercise and finish.

Anonymous said...

Finding this web site is a blessing because now I know I am not crazy. I had bilateral TKR on November 8, 2011 at age 75. I have had knee problems my entire life because my femurs lacked the grooves where the knee caps should glide. The surgeon reshaped the femurs. I had bone on bone and could only get up from a seated position by pushing with my arms which damaged my wrists. My surgeon did not mention fibromyalgia (I have had it for years) and I had no idea it would complicate surgery. I went through the surgery and initial rehab well although it was an extremely painful process, and six months after surgery both knees started to hurt as though they had been pounded. My surgeon said it was referred pain from arthritis in my back. A second doctor said it was caused by bad hips. Of course they were both wrong. Both knees are extremely sore to the touch and painful all of the time. I have more pain than I had before surgery and it is constant. Pain meds do help but nothing takes the pain completely away. I don't believe most surgeons have any idea that FM is a negative factor in knee replacement. I now have fairly good range of motion and I can get up from a seated position without using my arms, but at an awful price. Both knees ache terribly at night.
Elevating my legs does help. It's a damned if you do or damned if you don't with a situation like this. I sympathize with everyone who is suffering and wish doctors were better educated. Best of luck everyone.

msdmg said...

I had a TKR in 2004 and 2005. I have had constant pain due to FM. Now I have the legs give out and the pain is the same as when I broke my ankle. When I had my 2nd TKR the aethestist over dosed me with nerve block and now my body rejects all narcotic meds. When those attacks hit and they hit so suddenly I could chop off my legs the pain is so terrible. It affects me that I cannot drive and it scares me that they are getting more frequent.

Di

noreen said...

i have just had a full knee replacement my fybro flared up the pain was horrendous never known anything like it nearly blacked out the pain was that bad would not have surgery ever again unless i had a lifethreatening illness i have had a ceasearean birth and a hystorectomy in the past so i know what normal pain is this was not normal pain

DR TOM SANQUINI said...

ATLAST, I AM NOT A CRAZY 65 YR OLD
RETIRED (DISABLED) VETERINARY
SURGEON. I COULD WRITE A BOOK ABOUT
MY AND MY FAMILY'S EXPERIENCES WITH FIBROMYALGIA. MY OWN PROFESSIONAL BACKGROUND HAS MADE ME
EXTREMLY FRUSTRATED BY THE LACK OF
UNDERSTANDING BY THE MEDICAL
PROFESSION ABOUT A VERY REAL DISABILITY. I AM LOOKING FOR A PHYSICIAN WHOSE PRIMARY ACADEMIC
INTEREST IS FIBROMYALGIA AND ADULT
GROWTH HORMONE DEFICIENCY. I HAVE A
LOT OF PERSONAL AND FAMILY HISTORY
THAT MAY LEAD TO EPIDEMIOLOGIC
QUESTIONS THAT ARE LITERALLY SCREAMING TO BE RESEARCHED.
THOMAS SANQUINI, VMD
(TOMVET77@AOL.COM)

alice bryan said...

I am just now seeing this 2years later. Have you had the second knee surgery done yet question. I had a knee replacement 8 weeks ago and I have fibromyalgia which is pretty bad butI would like to tell you that I did great. Yes I did hurt but I took a positive attitude.my knee bend is now about 35 degrees.

Phyllis said...

Alice, my bilateral knee replacement prognosis was fine until about five months after surgery when my knees became very sore. The pain continues to increase. I hope you won't have this problem. I have not found a doctor who understands what I am going through. Phyllis

JAYJ1021 said...

Hello. I am so very glad to have found this site. I have fibromyalgia and just had a total knee replacement about 2 months ago. I guess I never put the two of them together as to why I am still having so much pain after this surgery. I wish I would have spent time researching it,as they made it sound like it was no big deal at all. It hurts to walk for very long, I hate having to drive because that moves my knee so it hurts, and I just am at the stage where I am worried I am not ever going to be the same. I thought I was just being a baby but after hearing others have had trouble, I know I am not just a baby! I don't know if I should go to a special fibro doctor or just keep seeing the ortho. My regular GP is the one who diagnosed the fibro. Anybody have any advise???? Thank you.

JAYJ1021 said...

Hi. I am so glad to have found this site. I have had fibro for a while and just had my right knee replaced. I am 38 years old and can honestly say I wish I would not have gotten this knee replaced. I am in so much pain. It has been two months now and therapy is painful, as well as just walking very much. My leg is very swollen and the ortho just keeps saying it just takes other people longer to heal. I really think that at this far out I should be feeling much better. I wonder if the fibro is causing me to not heal correctly. Do I ask the ortho about this or is there a real doctor to see for fibro? I have just always seen my regular gp. Just wondered if anyone could give me any info? Or any info about how to get it to stop hurting. Thank you for listening to me complain.

auntvivi3 said...

I am 57 years old and was diagnosed with FM about 10 years ago. I am scheduled for a knee replacement in 3 weeks. I have been very concerned about scheduling the surgery due to pot op pain but am bone on bone for over two years and the pain now is over the top. I am wondering if I should go to a Rehab for a week or two? Any ideas as to if that would help?

Anonymous said...

I am a 56 yr. old female with fibromyalgia and I had a total knee replacement 3 months ago. I really didn't consider how the fibromyalgia would affect the surgery before doing it. I was having so much knee pain that the surgery was necessary for me to have a normal life. I am still in physical therapy and progress has been very slow. Normally the range of flexion you shoot for is around 120-125. I am at about 105 without assistance after warming up on a bike. After my therapist works stretching the knee, I can get to about 112-115. The problem is that the knee is stiff and painful every day when I get up in the morning and it takes a lot of stretching exercises to get the knee to loosen up a bit. I have been so frustrated that I have not progressed as most knee replacement patients have. Especially since I have worked so hard in therapy, but I can not control the way my muscles have reacted after the surgery which have limited my range. My therapist is very understanding and we work hard but she only pushes me to the point it becomes really painful. My surgeon has been less understanding and just wants me to get the knee moving better. My advice is to get a therapist that believes in a moderate approach. I learned the hard way. We went aggressive at one point, mostly due to the urging of the surgeon, and I lost so much range because of the pain. We are now back to the slow and steady wins the race approach and I can handle it much better. But I came to the conclusion that I may never get the range that my surgeon would like but I can get around and do most of the things I want to do. I am happy I did the surgery but I am much more realistic about what the outcome will be than I was before. I reevaluated my goals and I am much happier.

Anonymous said...

At 66, I had finally decided to go ahead with knee surgery until I came across this site. I definitely need to do more homework before I take that plunge into the deep abyss of pain. I have needed TKR since 1996 when I severed my ACL, and now have severe bone on bone arthritis in that knee, which is in my "good" leg, In
addition to OA, I have very painful fibromyalgia, spinal stenosis, and debilitating post polio syndrome (mostly affecting my left leg). I am no stranger to pain or surgery and am also a breast cancer survivor. My physiatrist has given me permission to ignore the eager surgeons,
even though my constellation of problems have gotten progressively worse over the years. She told me, "you will know when the time is right." For me, I have 2 choices: TKR, with the prospect of being ambulatory longer or submit to life in a wheelchair. My biggest concern re: TKR has been that the rehab will make my polio leg worse, forcing me into a wheelchair anyway. Now I see that my bigger problem may be an exacerbation of my fibro pain. Any thoughts? I am open to all comments and suggestions. LWD
Sent from my iPad

Anonymous said...

I just want to throw it out there that in addition to the FM having caused my first TKR to never heal after 1.5 years, I was allergic to nickel and found out AFTER the surgery and not healing that the replacement was made MOSTLY of nickel and so between the allergic reaction resulting in my body "rejecting" the prosthesis, the FM caused a "double whammy" in it never healing. Even 1.5 years after the surgery I couldn't walk for more than 15 minutes tops and couldn't stand for more than an hour without the pain becoming disabling. So I had a titanium prosthesis for the second surgery on the same knee and while I was SO happy with the initial (2nd) recovery compared to the first and worked very hard and succeeded in getting the maximum range of motion after both surgeries, I am now 7 months post-op and my knee has filled so badly with scar tissue that it is every bit as painful as before the 1st surgery! I just wanted everyone to know that my surgeon believes patients with FM tend to build excessive scar tissue at ALL injury sites (I also had a left shoulder labral tear that got completely frozen with scar tissue and had to go though what they call "manipulation under anesthesia" which amounted to the surgeon literally throwing his body weight onto that shoulder in order to break it up, causing a huge bruise on my BACK from where he laid into me as hard as he could in order to break it all up. Luckily, it has not re-filled with scar tissue but my surgeon also believes if I have the other knee done, which is also bone on bone, it will fill with excessive scar tissue also. And to top it off, I have a blood disorder that makes me have low platelets and he also believes that the disorder causes slower healing so you might want to have your doctor check your platelet level prior to undergoing such invasive surgery. I just wanted to put my experience on here so anyone else with a metal allergy to nickel, FM or low platelet count can really undermine your recovery and leave you with lifelong pain due to scar tissue that will just keep rebuilding even after removal. I am on a wait list to have the other knee done but plan to put it off until I see just how bad the pain gets as the replaced knee continues to build yet more scar tissue. It actually "crunches" more than before the surgery and is now so painful that I really doubt I will ever go through having the left one replaced. I'm hoping someday I will be able to walk for more than 15 minutes at a time but I'm sure not counting on it with my body seemingly fighting against me. I hope this is of some assistance to someone in deciding what is best for them. Best wishes to you all... you have my utmost sympathy! I'm only 59 years old but feel my life is so limited for my age and depression is another "side effect" of all I've been through with no better result than I've had after two painful surgeries and extensive physical therapy, all to still only be able to walk no more than 15 minutes at a time. Bless you all and hang in there!
Kathy