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TKR Seems I am not progressing<

@Josephine , It has been almost 3 weeks since we communicated and I want to catchup. I thought I had read both your recoveries but I had not. I read 1 and just the beginning of 2. Well let me tell you. I read the whole thing once and then again. I had my husband read it also. It could not believe the similarity of our recoveries. None of my friends who have had TKR could relate to my nerve pain as they did not have it. The intense burning not surgery pain. It felt like a blowtorch was aimed at my whole left side. This didn't start until 6 weeks out. I wish I could understand it better, you know, what is actually happening to all those little nerves. Even my GP hadn't had that much experience with it but put me on gabapentin first 200mg and then up to 300 mg which is what I am currently on every 8 hours. I still take 5mg of oxy along with the gaba but am cutting that in half this week and will try and quit next week.


1. What the heck is this "nerve pain" all about Why did we have it so bad and some not?

2. Is there a connection with the patella? They said mine was removed during surgery, ground up, polished and put back in.ouch!

3. Just when I think I might actually survive this whole thing it goes back to square one with the burning pain and stiffness.

4. My knee is also so hot at night I also sleep with the duvet off. I think I could fry and egg on my knee. I have no temperature but always think "infection" in the back of my mind.

5.Your posts go from March 19 to June 14 when you seem totally well. What were you experiencing those 3 months as that is where I am now at 14 weeks.

6. When and how did you wean yourself off the gaba? Did you ever stop and then go back on because you weren't ready yet.

7.I repeat, our experience seems so identical that I am hoping for some encouragement to keep going. It helps to know what others have experienced.

8.What meds were you on after June 14?

9. You won't believe this but I also had a similar experience in the hospital as yours with the staff nurse and the "loo". Just like you, they were all great except the one. Funny!

Thanks, Josephine, don't know what I would do without you and all the others on this wonderful site.You guys are
 
Josephine is recovering from shoulder surgery and she's not back full-time on BoneSmart yet, so it may take a little while before she responds to you.
 
My first knee was quite hot at first and stayed warm a long time. It was fine. So try to put your mind at ease on that front.
 
I was told that heat was a sign of healing, and that's good for you.
 
maryanne73 said:
The intense burning not surgery pain. It felt like a blowtorch was aimed at my whole left side
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Yep, that's exactly how I described it to my GP! She put her had on my knee and said that it didn't feel that warm. I told her she should feel it on this side of my skin!
maryanne73 said:
1. What the heck is this "nerve pain" all about Why did we have it so bad and some not?
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I just created this article especially for you! Let me know if you can understand it. What happens in neuropathy or nerve pain?
maryanne73 said:
2. Is there a connection with the patella? They said mine was removed during surgery, ground up, polished and put back in.ouch!
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No, not at all! But I think you must have misunderstood what the surgeon said. They would shave the articular surface off, prepare it and fit it with a plastic button.

[Bonesmart.org] Seems I am not progressing<


maryanne73 said:
3. Just when I think I might actually survive this whole thing it goes back to square one with the burning pain and stiffness.
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Trust me, I know.
maryanne73 said:
4. My knee is also so hot at night I also sleep with the duvet off. I think I could fry and egg on my knee. I have no temperature but always think "infection" in the back of my mind.
Click to expand...
No, it's not infection. It's the wrong kind of heat!
maryanne73 said:
5.Your posts go from March 19 to June 14 when you seem totally well. What were you experiencing those 3 months as that is where I am now at 14 weeks.
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Well it just goes to prove what we are always saying - no two recoveries are ever the same. They might have similarities but they are never the same.
maryanne73 said:
6. When and how did you wean yourself off the gaba? Did you ever stop and then go back on because you weren't ready yet.
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I'm a nurse! I knew how do do that. And I never rushed to do it. I can't remember if I described my method but one thing I did was to wait plenty of time before I tried to titrate myself off it.


sistersinhim said:
I was told that heat was a sign of healing, and that's good for you.
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Not this kind of heat, Paula! @sistersinhim
 
Hello to my Friends at BoneSmart. I have not posted in 2 months as we were at our family retreat at a cabin in northern Wisconsin. Only rule is no electronics! Can you believe it? Only fishing, hiking(not me) reading, relaxing, fishing, fishing,etc.:heehee:

Thank you Jo for the excellent article on nerve pain. Yes, I did understand it and it made things much more clear. Thanks, again.

The 3rd of September will be 6 months for me. I wish I could say I was fine but that is not the case. Incision is beautifully healed but I still have lots of stiffness burning around my knee. Also the nerve pain along my whole side is still there often enough. I saw a spine surgeon who ordered an MRI of the lumbar spine. Saw compression between L5-S1 and ordered a steroid shot to that area. Nothing. I just had an MRI of the rest of my spine on Friday and don't have the results yet. The thinking here is that the surgery realigned my back and this could be causing the problem. My knee did bow out and was ALWAYS 1/2" shorter than my right leg so it makes sense, I guess.

Because of the continued pain and stiffness I can't get my ROM to budge off 100 or so. I don't go to PT and try to stretch my knee gently when it is not so stiff. I don't want to have MUA and will fight not to.

I miss all the support you give me and hope some of you have more advise and thoughts. I try to stay optimistic but after 6 months it is hard to do. Hope to hear from all of you.
 
Whoops forgot something very important!:unsure: Over the last four weeks I have weaned myself off of Gabapentin as I was not liking the side effects. I have not had any in my system for 7 days and have been having a very hard time usually at night. I wake up with a frightening "flush" and sick feelings all over my body. They pass in a few minutes and I fall back to sleep and then I will get another episode. Maybe 5 or 6 a night. Is this just withdrawal or might I have something else going on.:beg: I was on 300 mg 3 time a day. I also stopped the oxy 5 mg 3 times a day.
 
hi maryanne73...that was wonderful you got away for awhile and with no electronics!! good for you. sorry you're still experiencing the nerve pain and burning and now the back issues and having to go for m.r.i.'s. i'm around a month and a half behind you and one similarity is that i still have stiffness and pain when getting up from sitting or getting in and out of the car, driving, or sitting too long at the theatre which i've been to 3 times now since surgery. however, i'm fine when walking, no pain. i cannot rotate pedal on bicycle or go downstairs alternate feet, unless i go very slowly and deliberately hanging on to railings on each side. like you, i seem to be stuck with my r.o.m. around 95 degrees, if that. you're ahead of me there. i weaned myself (very quickly over 2 days) from the narcotics at 3 weeks post op and it took another 2 weeks to get out of my system where i would feel like eating again and no nausea or constipation.

i hope you can get a definitive diagnosis from the m.r.i.'s so you'll know what to do to move forward. just wanted to let you know that you're not alone in your symptoms from the knee surgery. hang in there. this is a long and frustrating recovery. let us know your results when you get them and how you're getting on. are you still icing and elevating your knee when you can? hope so. :console2:
 
My doctor told me at five months, that he thought my rom would improve 10 or 20 degreees over the course of the year. I wonder if you are doing too much with your knee? If your quads are strong, they help support the knee. But, if you quads are still weak, the joint has to support itself which it complains about by swelling.

So, what are you doing on a daily basis? Not many docs would do a MUA on someone who has a rom of 100, so maybe treat your knee more gently---more rest, elevation and see if you can get rid of the last bit of swelling.
 
oh, at six months, I also used support hose when I would be standing a lot and also saw a lymphatic massage therapist who did help a lot .
 
Thank you liam2015 and ski girl For your response. You mentioned you felt nauseous for two weeks after stopping the narcotics. Could you describe it a little more? I feel really sick and flu like. Trying to figure out if this is normal for detox and just fight my way through it or go to my doctor. I think I will take it easier and go back to the basics, ice and elevate. Thought I 'd be done with that by now but I can see you have to do whatever you can to move ahead.
 
hi maryanne73 ~ i was taking oxycocet (percocet) for the first 3 weeks. i was terribly constipated even with taking Docusate Sodium from the beginning, then started taking Senekot and got terrible gas pains and diarrhea. also i could barely eat anything ~ even gagged brushing my teeth. i finally started eating properly at week 5. i lost 12 or 13 lbs. i went to my family dr. at the 3 week post op point, had bloodwork done and everything was normal except for, i think, liver function, which was explained by something (i forget now). it was also suspected i had a u.t.i. as i was urinating so often and there was an odour, so put on antibiotic for a week and it cleared up. i felt terrible for the first 5 weeks, especially from the constant nausea.

i don't know about weaning off Gabapentin as to the side effects or how long they last. it might make you feel better to see your family doctor, perhaps have bloodwork done to see if you're deficient in anything. my doctor advised me to "graze" through the day so that i got something into me. for example for breakfast i would eat 10 dry shreddies and 3 tablespoons of unsweetened apple sauce; just small amounts whenever i could. hope you start to feel better real soon. it's bad enough having the knee stiffness and back pain without having tummy troubles also.:friends:
 
@maryanne73 - Your symptoms describe perfectly what I felt for two weeks while withdrawing from oxycodone! Nasty!! But it will pass. Hope you're feeling better!
 
Hi Knees4Me, you are right it is NASTY!!! Hope the time goes quickly.:blackcloud:
 
Just a thought, Maryanne, but are you taking iron pills? They're often prescribed two a day for blood loss post-surgery. Well... some people (like me) react badly to iron pills. I was nauseated, had no appetite, and just felt horribly sick. I thought maybe it was from coming off OxyContin, but the real culprit was the iron pills. My personal physician told me to stop taking them and just be sure to eat iron-rich foods. As soon as I did that, like a day later, I started feeling better. Lots better!

Not saying to just stop taking iron pills, but if you are, ask your doctor about stopping them.
 
I had the same experience as Susie. Iron pills bothered me much more than the oxycodone. Once I stopped the iron pills and began eating protein instead I felt much better.
 
Thank you Susie. I don't take iron pills and use iron free vitamins. Nice to hear from you KerriB.

Hear is a question for my bone smart gurus. If I stated off my knee TOTALLY for like 48 hours and iced and elevated do you think I could drive the swelling out and get somewhere with my ROM. I haven't moved an bit in months. Just a thought.
 
i would surely like to know if that would work maryanne73. i would also like to know why some people have swelling, yet are still able to accomplish an excellent r.o.m., while others like me, are stuck? i guess those are the $40,000. questions. :shrug:
 
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