Questions about my knee replacement... and a little Pixie Dust please *** Update 8/29

[Here we go again...]

Hey guys,
I know some of you have had knee replacements and many of you know someone who has had one. I had my replacement done May 21st, 3 months ago.

I started working again on the 1st of August, standing and walking, but only 4 hours a day.

I am STILL having the worst problems with my knee. It is a different pain than before. This is nothing like the bare bone pain I had before.
The pain now is mainly muscle and severe pain where the drain was. I can stand and walk fine but as soon as I sit the pain starts. If I stand or walk any more than 4 hours, I start limping and then my other knee hurts.

I can exercise on the bike, nu-step or work out in the pool and I have no problems. But the second I try to relax I am in severe pain. If I take it easy on a weekend it is not as bad at night, but I have to work and I have to exercise.

I have not slept at night in months... I am a mess.

I see my doctor again Tuesday. When I saw her last she said this could last for a year. OMG! How in the world do people deal with chronic pain??? I have had arthritis since I was 9 years old and have dealt with that most of my life. Of course with arthritis you have good days and bad days. I am now at a "bad days" stage every day.

Can someone tell me if this is normal?!? Have you met anyone with this type of problem?
My Rheumatologist said that part of the problem is that I also have Fybro-myalgia and that is adding to the pain.
I can not work on pain meds so during the day I just get by... at night I spend most of the night trying to control the pain that is now out of control.

Any suggestions?

[buzznwoodysmom]

Angel,

I don't have any suggestions for you, but I do hope you start getting some sort of relief soon. I know the last time I talked to you, which was at least several weeks ago, I was surprised to hear that you were still in lot of pain. My grandfather did have knee replacement about 5 years ago and I don't remember him taking very long to recover. He was back to normal within less than a month. Unless, of course, he just acked like he was fine so that we didn't worry too much. Anyway, here's some :pixie: for you to get well soon!!

[Beast_fanatic]

I don't have any words of wisdom either, but :pixie: is on the way!

Hope the doctor can do something to help you!

[MsMin]

Sending loads of :pixie: I notice you're up late. I know that stress and lack of sleep will make the discomfort worse b/c the body heals when sleeping , especially to reduce the inflammation you are feeling. Did your dr. tell you that a large part of fibromyalgia is psychological? People usually get pretty upset when they hear that, some assume that I'm saying it's in your head or you are crazy but that is not what that means. It means that stress, anxiety and depression can aggravate your symptoms. You are genetically predisposed to the rheumatoid family then when stressed, and we know your work hasn't been fun, stress coupled with lack of sleep reduces the body's ability to produce corticosteroids. It's circular, stress can interrupt sleep leading to more discomfort and increased depression depriving you of more sleep further reducing your body's ability to heal and recover naturally.
Have you tried some deep relaxation techniques? They can help. You have to unplug but that's never easy. :pixie: Some doctors prescribe sleeping pills to help you heal in addition to those designed to help your body heal. Sorry my :magic: wand won't help you to feel better but I'm wishing you do real soon.

[Here we go again...]

Did your dr. tell you that a large part of fibromyalgia is psychological? People usually get pretty upset when they hear that, some assume that I'm saying it's in your head or you are crazy but that is not what that means. It means that stress, anxiety and depression can aggravate your symptoms. You are genetically predisposed to the rheumatoid family then when stressed, and we know your work hasn't been fun, stress coupled with lack of sleep reduces the body's ability to produce corticosteroids. It's circular, stress can interrupt sleep leading to more discomfort and increased depression depriving you of more sleep further reducing your body's ability to heal and recover naturally.

Well, here I sit at 1am. This is driving me crazy!

Beth, this is one of the things my Rheumatologist explained in detail. He even spent time with Bobby trying to help him understand. Bobby had a hard time believing in something that he could not see and there in no cure for.
I am sure I am in the middle of a vicious cycle right now and somehow I have to break through.

I am on sleeping pills. I take ambien and I fall asleep very easy. After I am asleep for an hour or two I move... then it's over. As soon as I move pain from my knee wakes me and I am up for hours. I just took another percocet and hope the pain will stop soon so I can at least sleep 3 or 4 hours tonight.

Thanks for the support. It is so hard to keep smiling... at times I miss the real me. I am not the happy go lucky person I have always been. I can't wait to feel like me again.

[Dsnygirl]

Angel, I am so sorry this is so tough on you.... I'm sending loads of :pixie::pixie: and prayers your way, that things will get better soon. I would hope your dr. can figure out and fix what is wrong -- I've never heard of such pain after replacement surgery for so long!! Good luck, and keep us posted on how you're doing.... you know we're all thinking of you!! :)

[disneydeb]

I'm so sorry that you are still not feeling 100% yet. Hang in there though, you will eventually feel better.:pixie:

[Nascfan]

Oh Angel, I feel so bad for you. Sending lots of :pixie: in hopes it gets better sooner rather than later. :hug:

[conorsmom2000]

Oh Angel, I'm so sorry that you are dealing with this! I don't have any advice but I will ask those that we know that have had knee replacements and see what they say. Is there anything that will make you more comfortable to ease the pain? I've major reconstructive surgery on my knee and have a screw holding it together, along with severe Osto arthritis in it - the only way I can sleep is with a pillow, bent in half, under my knee - I can not sleep with knee stretched out straight at all. I was left with issues from the surgery - I can't kneel at all (it feels like someone is shoving stake up my knee when I try) and I lost feeling is some areas, but those I can live with - what you are going through sounds like torture.

I hope some can give you some great advice so you can get the rest you need. I will let you know if I find out anything. Much pixie dust that you are feeling better very, very soon!

:pixie::pixie::pixie::pixie:

[AuntDJ]

Angel-

My mom had knee replacement 4 days after you. She seems to be doing very well...now

She had the night pains for a while and her doctor told her that is was the muscles and nerves that were cut to put in the new knee coming back to life. She started taking some of the anti inflammitory medicines she was on prior to the surgery and they really seemed to help.

For a while she could not even wear pants or cover up in the bed as it would hurt her scar...her therapist told her to take a towel and gently rub her scar, just while watching tv or whatever..and that seemed to help.

Unfortunately it seems you have some other circumstances working againest you. I hope you feel better soon.

If you don't get any better advice and you want me to ask my mom something specific, PM and I will ask her!

Good Luck!
AuntDJ

[Piglet822]

Angel, I'm sorry to hear you're still having trouble with that knee :hug:

I'm sending tons of pixie dust to you in hopes things will start getting better for you. Hopefully your doctor will have something good to tell you on Tuesday :fingers:

But I really think a trip to Disney in October on a certain weekend would help tremendously :D

[mrsgaribaldi]

I can't help with any personal experience, sorry. I just wanted to send some :pixie::pixie::pixie:your way. I hope you are feeling better soon.

[kakn7294]

Angel, I'm so sorry you are still having so much trouble. I have no personal experience either but from what I know, most people do still have some pain for quite a while after surgery but not to the extent you are. I think it's probably from the fibromyalgia as well - such a difficult and unexplainable disease. So many people, even the experts, don't understand it. Good luck to you - here's a lot more :pixie: :pixie: :pixie: :pixie: :pixie: to help you get through. Keep us updated!

[Marilyn Michetti]

Angel, I've had both knees replaced, and I KNOW what you mean. Some of my "pain", is really stiffness, and it seems to come and go with humidity. Driving bothers me, and sitting too long.

You're going to have to talk to your Dr. - maybe you need another X-ray. Also, you need to give yourself more time - it's a long recovery. What helps me most is heat on the knee, and, mild exercise. I think, sometimes, we think we're going to impress the Dr. or something, by running a marathon six months after surgery. The truth is, we're ahead if we're walking a mile. If you have a pool or hot tub, do your "barre" - (that's range of motion in a tutu). Keep ahead of the pain. It's easier to prevent a "10" than it is to fix one. Make a list of daily activities listing "must do's" for the morning when you're fresh, "want to's" for the afternoon, and "the honey, I have a headache" list, when you're reaching your limit.:drama:

You should be feeling stronger soon, but don't rush "soon". Keep us posted also!

[Sean Riley Taylor's Mom]

I am so sorry you are still in so much pain. I know you were hoping this was going to put an end to your knee pain.

I have had two surgeries on my left knee and am going in again in October for another OATS procedure on the same knee. No where near as serious as a knee replacement but, I know what it is like to hope that something will finally end the pain.

I hope you can get to the bottom of why you are in so much pain and do something to alleviate it. Many good thoughts for you for a pain free knee!

[Here we go again...]

Oh Angel, I'm so sorry that you are dealing with this! I don't have any advice but I will ask those that we know that have had knee replacements and see what they say. Is there anything that will make you more comfortable to ease the pain? I've major reconstructive surgery on my knee and have a screw holding it together, along with severe Osto arthritis in it - the only way I can sleep is with a pillow, bent in half, under my knee - I can not sleep with knee stretched out straight at all. I was left with issues from the surgery - I can't kneel at all (it feels like someone is shoving stake up my knee when I try) and I lost feeling is some areas, but those I can live with - what you are going through sounds like torture.

I hope some can give you some great advice so you can get the rest you need. I will let you know if I find out anything. Much pixie dust that you are feeling better very, very soon!

:pixie::pixie::pixie::pixie:
I have tried sleeping with a pillow and it works for a little while... then I move... and it is all over. You know how you described trying to kneel and it feeling like shoving a stake in your knee. Mine feels the same when I bend it sometimes, only I call mine a hot poker.


Angel-

My mom had knee replacement 4 days after you. She seems to be doing very well...now

She had the night pains for a while and her doctor told her that is was the muscles and nerves that were cut to put in the new knee coming back to life. She started taking some of the anti inflammitory medicines she was on prior to the surgery and they really seemed to help.

For a while she could not even wear pants or cover up in the bed as it would hurt her scar...her therapist told her to take a towel and gently rub her scar, just while watching tv or whatever..and that seemed to help.

Unfortunately it seems you have some other circumstances working againest you. I hope you feel better soon.

If you don't get any better advice and you want me to ask my mom something specific, PM and I will ask her!

Good Luck!
AuntDJ
I had the pain from touch for a while too. Thank God that is gone. Ask her is she ever had crunching sensations in her knee. At times it feels like it crunches and everyone says it should be smooth like butter.



But I really think a trip to Disney in October on a certain weekend would help tremendously :D
This made me laugh out loud. Since Bobby has not seen me laugh much he wanted to klnow what was so funny. I read him your message and he just smiled. I might have to send you his cell phone number so you can work on him some more. I need that weekend more than you know.


Angel, I've had both knees replaced, and I KNOW what you mean. Some of my "pain", is really stiffness, and it seems to come and go with humidity. Driving bothers me, and sitting too long.

You're going to have to talk to your Dr. - maybe you need another X-ray. Also, you need to give yourself more time - it's a long recovery. What helps me most is heat on the knee, and, mild exercise. I think, sometimes, we think we're going to impress the Dr. or something, by running a marathon six months after surgery. The truth is, we're ahead if we're walking a mile. If you have a pool or hot tub, do your "barre" - (that's range of motion in a tutu). Keep ahead of the pain. It's easier to prevent a "10" than it is to fix one. Make a list of daily activities listing "must do's" for the morning when you're fresh, "want to's" for the afternoon, and "the honey, I have a headache" list, when you're reaching your limit.:drama:

You should be feeling stronger soon, but don't rush "soon". Keep us posted also!
I am going to request a MRI Tuesday. I just think something is wrong. Either that or I am crazy.... well, it could be either one.
I know that you have been through so much so I am sure you can completely relate to what I am going through. I hate coming home and breaking down crying. Every day it is getting harder and harder to think about going through this alll over again tomorrow.


I am so sorry you are still in so much pain. I know you were hoping this was going to put an end to your knee pain.

I have had two surgeries on my left knee and am going in again in October for another OATS procedure on the same knee. No where near as serious as a knee replacement but, I know what it is like to hope that something will finally end the pain.

I hope you can get to the bottom of why you are in so much pain and do something to alleviate it. Many good thoughts for you for a pain free knee!
Best of luck on your upcoming surgery. I hope everything goes well and you never end up witha replacement. Make sure to keep exercising... it does help some.

Thanks everyone. The words of encouragement help!

[Piglet822]

This made me laugh out loud. Since Bobby has not seen me laugh much he wanted to klnow what was so funny. I read him your message and he just smiled. I might have to send you his cell phone number so you can work on him some more. I need that weekend more than you know.

Go ahead and send it. I can call him on my way to work in the morning. You know I usually start at 3 AM, that's 2 AM your time. Yeah, he'll be good and drowsy and will agree to anything just so he can get back to sleep :D


Either that or I am crazy.... well, it could be either one.


No comment :secret:

[kakn7294]

Either that or I am crazy.... well, it could be either one.
Well, we're all a little crazy here - but that's why we love each other and all get along so well! Back on subject, are you sensitive to all pain medications (that is, do they all leave you feeling foggy :crazy: or loopy :dizzy: - or maybe a little crazy :doh:)? Perhaps they could try you on something else that you might be able to take during the day so the pain doesn't get so bad for at night. I assume that you've talked to your rheumatologist as well as your orthopedic doc. You might want to consider speaking to a dietician as well - maybe you can find one in your area that specializes or is knowledgeable in the rheumatoid diseases. Sometimes dietary changes can help in rheumatoid flares. Best of luck to you. I know you wanted to be all better by now. BTW, if you want, we can all call Bobby for you! We could wear him down real quick!

[AuntDJ]

Angel-

My mom said she hasn't had the crunching feeling since the surgery, she has had some popping sensation, but no crunching. She does have some points of pain, where she will just have a pain shoot thru her knee.

Also, she is allergic to codine so she could not take very much pain medine, her doctor gave her a non narcodic that she can take and still go to work, you may ask your doctor about something like that.

Let me know how it goes!

DJ

[Here we go again...]

Angel-

My mom said she hasn't had the crunching feeling since the surgery, she has had some popping sensation, but no crunching. She does have some points of pain, where she will just have a pain shoot thru her knee.

Also, she is allergic to codine so she could not take very much pain medine, her doctor gave her a non narcodic that she can take and still go to work, you may ask your doctor about something like that.

Let me know how it goes!

DJ

I think I am going to ask the doctor about doing an MRI. I work in a pharmacy and the pharmacist said it sound like I my have messed up a ligament. Gosh I hope not....

I am also allergic to codiene so I am limited on what I can take. I can take Darvocet during the day, but at this point it is not helping. I can not stand the way lortab makes me feel and it makes me itch like crazy. So, the meds I can take jump up into the narcotic family... I could take them and work but I will not do it. I work in a pharmacy and count and pour medications all day. I worry already about making errors... I would never forgive myself if I messed up bad. The pharmacist has to double check all of our work, but what if he misses something??? If it is a choice of my pain or someone else's health - I will live with the pain.

Thanks for the support guys. I really appreciate it.

[ElenitaB]

Angel, I'm so sorry you're still having issues with your knee. I do hope that the healing process kicks into high gear real soon.

I have a few friends and family members with fibromyalgia and they do say that, as crazy as it sounds, keeping active really does help. I know that you are doing your therapy so we don't need to push you along in that area of your life at all. :cheer:


But I really think a trip to Disney in October on a certain weekend would help tremendously :D
I agree! What's Bobby's number? ;)

Here's some :pixie: to help you through!

[Here we go again...]

Well, today (yesterday actually) I went to the doctor. I did not leave any happier than when I went in...

I found out what the crunching is in my knee... my doctor did not change my patella!!! She said the crunching I am hearing/feeling is the arthritis under the patella. I was floored... I thought I got a TOTAL knee. She said I did... that the patella is not always changed because more people seem to have problems after it is replaced.
Now she is sending me to a pain management doctor. I am not happy about that... She says that I am still having acute surgery pain and that is normal (expecially with the Fybro Myalgia). A pain management doctor is supposed to be able to find the medicines that work on me without making me feel like I am drugged all the time. I cried for hours.... I work in a pharmacy and most of the perscriptions I see coming from pain mgmt clinics are nothing more than a bunch of addictive drugs and junkies bringing them in. I don't know what to do...

Then, I needed some paper work filled out and talked to a nurse... one that had a knee replacement 3 years ago. Guess what? She has had the same exact problems as me! At 3 years she is still having complications. She did not even get off her walker until 6 months after surgery and was out of work for a year...
That made me feel a little better, less crazy, but worried about how long this could go on.

The doctor said this is why they do not like to do this surgery on young people. The younger you are then stronger your nerve endings are and the more pain you experience. I don't know how true that is, but all of the elderly people I spoke with say the same thing.

Then I got home and called my company to extend my partial LOA. Many of you know that I am in the middle of a dispute with my boss over my pay. When she changed my pay it took me off of partial leave... now the system shows me as a part time employee because I have not maintained 30 or more hours.... do you know what happens next? I lose my benefits and vacation. I was furious!! Now I have to wait for her to try to fix this.... :mad:

What a bad day. And here I sit at 2:45 unable to sleep. :(

[kakn7294]

Oh Angel, I'm so sorry! I wish there was something I could do for you. I encourage you to at least go to the pain management clinic - they really might be able to do something for you. It's worth a shot. I know you work with medications so you do see a lot of addiction but not all pain medications have to be narcotic and addictive. BTW, do you take or have you tried Neurontin? It often helps greatly with nerve pain - ask about it if you are not already taking it.

[Beast_fanatic]

Angel, sorry to hear the news from your doctor wasn't good. :(

My husband had some issues several years ago with some pain in his neck/back and he went to a pain management specialist, and the doctor was actually able to help him with injections, so hopefully something like that will work for you as well. Loads more :pixie: on the way!

[Marilyn Michetti]

I'm speaking strictly as a 'pain" patient, that's been on morphine every eight hours round the clock. If I'm understanding the medicine correctly, it's about the only one that doesn't scramble your brain waves. (PLEASE tell me if I'm wrong). At any rate the Dr. said I can drive and whatever else with the morphine. This is the first time I've felt under control, and hopeful that It's going to be manageable. Would that work for you?

The funny part is that every month, I have to go to Pain Clinic, tinkle into a paper cup to prove I'm really on drigs, talk to the Dr. about how I'm doing, get my script, and go. I guess we're legalized junkies with immunity. It's not so bad, and it keeps us going.

Please keep us posted. I can';t believe they left your patella in:confused:

[Here we go again...]

I'm speaking strictly as a 'pain" patient, that's been on morphine every eight hours round the clock. If I'm understanding the medicine correctly, it's about the only one that doesn't scramble your brain waves. (PLEASE tell me if I'm wrong). At any rate the Dr. said I can drive and whatever else with the morphine. This is the first time I've felt under control, and hopeful that It's going to be manageable. Would that work for you?

The funny part is that every month, I have to go to Pain Clinic, tinkle into a paper cup to prove I'm really on drigs, talk to the Dr. about how I'm doing, get my script, and go. I guess we're legalized junkies with immunity. It's not so bad, and it keeps us going.

Please keep us posted. I can';t believe they left your patella in:confused:

Medications from pain management doctors seem to give out just enough to keep the person out of pain and able to still function in life. Then there are the ones that give the patient what ever they want. They turn into junkies fast. I am scared I will turn into one of them.
I will listen to the doctor... just to hear what he has to say. If I like it I an in. If not, I will be running away.

I have seen SSSSSOooooooo many addicts... I am scared.