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Author Topic: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?  (Read 3919 times)

Offline MEJANE

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8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« on: October 20, 2006, 02:35:30 AM »
Hi folks! New to the site and will be grateful for feedback..trying a different category to see if I get a bit more replies(think I was in the wrong spot..)

I had open knee sx 36 years ago (ACL and MM removed) and finally August 28 the TKR. Surgeons told me I had to, if I waited any longer the replacement might not be doable..and that I ws at high risk for fractures etc and the bones were disintergrating...SO. Top notch surgeon and hospital..Went well and uneventfully.

Post op  I atttained full flexion and great ROM.I did three weeks of home PT and then tried outpatient PT but ran into a LOT of pain...So doctor advised me to back off as I had made so much progress...

Eight weeks out now and still have a tremendous amount of heat in the knee and the kneecap is killing me. Trying to stay off the pain meds and to get back to work. But by 2 or 3 in the afternoon I am busted. Have to take a Percocet (one) then and another at 9 or so to try and get some sleep.I  do not want anything to touch the knee surface and find that I am just exhausted all the time. Clothing is tough as pants drive me up the wall so I am trying skirts and holding the fabric off my knee ( and i DO look so odd hobbling along like that!)

Sleep with a pillow between my legs but still not making it thru the night. And using a dishrack to try and keep the covers from touching,,,(necessity the mother of invention!)

Stairs are doable but not without a lot of pain.

Doctors THRILLED with my progress, tell me I have done in 8 weeks what takes a lot of folks months. Tell me  the heat is "HEALING" and not to worry about it.It is NOT an infection. None of this is of much comfort..

I am not overdoing it, I have great extension and ROM pre-op and am in good shape. But I am totally depressed with the amount of pain and the heat...pain especialy in the kneecap.I am 55 and in good shape (well I was).

My OS offers sleeping pils which I will NOT do as my sister found me changing the bedsheets and doing laundry at 2 am on one Ambien. Offered Motrin 800 which does NOT touch the pain and make me sick to my stomach. Especially because when I am in pain I can't eat.


The KICKER here is that I had a bad anesthesia injury in 1991 and  developed RSD in my right hand which took years to plateau. It is something I deal with (stiffness and pain) and have moved along fine. But this pain is just a bit too deja vue for comfort.

Thoughts?
Thanks. Good to vent as I am SO second guessing this surgery.. really discouraged and diibillitated

Offline Nettan

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #1 on: October 20, 2006, 06:24:51 AM »
Are they aware of your RSD in your hand ? Have they checked out so you haven't developed that in your knee also ?
I would ask them to run tests and check for that.
Hope you get an answer soon.

HUGS NETTAN  8)
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline MEJANE

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #2 on: October 20, 2006, 01:24:11 PM »
Thanks for the reply! Yes they are aware of my history and are very concerned...I am now scheduled Monday for a visit to a neurologist who specializes in rehab and pain management. They have a good website with a section devoted to RSD. Which is refreshing as in 1991 I had to go all the way to Johns Hopkins to get help. And everyone thought I was a nut!

So We'll see. I have not read anything about the potential for an RSD "overlay" if you will, in subsequent surgeries. I have has the knee scoped in the interim with no problem...this just worries me to say nothing of being a constant source of pain. Morning, noon and night...


Offline Nettan

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #3 on: October 20, 2006, 02:44:38 PM »
Good that they are taking you seriously..I do hope you haven't developed it there too.
I have probably got it in my other knee too..we'll see how it goes. Are waiting for painmanagement appointment soon.Please let me know how it turns out.

HUGS NETTAN 8)
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline Mitidai

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #4 on: October 22, 2006, 01:42:50 AM »
Hi Mejane,

I had heat in my tkr for at least three months after I had it done.  I could even feel it radiate through my slacks.  As far as the pain, I'm ten months out from my tkr and still have tiimes when it is painful if I overdue it.  At eight weeks you would still have a lot of pain.  My pt told me to expect to have pain and tightness for at least a year after and I've talked to other people who've had tkrs and have bad days for quite a while.  It gets much better with time.  Now I'm looking at having the other one done but hope to hold off until this one is closer to being pain free most of the time.

Take care and hang in there,
JAN Y
9-2002 medial menisectomy left knee
11-2003 lateral menisectomy and microfracture left knee
11-2003 fractured cartilage left knee
lateral menisectomy right knee 1-2005
microfracture right knee 1-2005
tkr left knee 1-2006
arthroscopy and lateral femoral chondroplasty 9-2006

Offline moonbeam

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #5 on: October 22, 2006, 07:47:30 AM »
I thought a nerve block was always recommended after one RSD diagnosis for subsiquent surgeries. I can relate to the not wearing slacks thing. I miss wearing jeans and can't figure out how to dress up sweatsuits. It seems to be all I can tolerate. Pain Patches , those are two words I can't emphasis enough. What do you mean by a bad anethesia injury? and how did it plateau? Are you referring to remission? What meds were you on during your RSD phase?  I sure hope it's not back, but it sounds suspicious, the sensitizing of the knee. Keep us informed we wish you more sleep and better pain days.

Offline Mitidai

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #6 on: October 23, 2006, 02:41:49 AM »
What is RSD?

JAN Y
9-2002 medial menisectomy left knee
11-2003 lateral menisectomy and microfracture left knee
11-2003 fractured cartilage left knee
lateral menisectomy right knee 1-2005
microfracture right knee 1-2005
tkr left knee 1-2006
arthroscopy and lateral femoral chondroplasty 9-2006

Offline MEJANE

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #7 on: October 24, 2006, 05:05:23 AM »
Thanks everyone for the replies and kind words.

RsD- Reflex Sypathetic Dystrophy-Check the internet about it. Suffice it tosay it is very debilitating and still not wll understood.. My diagnosis was in 1991. The injury was a severing of the medial nerve in my arm which set up the syndrome. HAve no idea how I lived thru it....family frineds dogs and horses, lots of hand work. the plateau is the burning firey pain has subsided. I now have terrible stiffness, hypersensitivity to cold. It aches and hurts. Lousy thing to have.
Great to see the new doctor today. they suspect a milder recurrence of RSD and say while not common, it does happen. Taking a very conservative course...Lidoderm patches, Clonopin for sleep and the Percocet as needed ( I only will take two a day, three when an exception is needed.

The heat and swelling I am ok with. It the hypersensitivity to touch that is disconcerting. And the pain escaltes thru the day as I ty to get about so  it is a catch 22. Try to stay active and get into a real state of pain or stay quiet and whither away. With better pain management I hope to get back into more aggressive PT as that is good for the leg. And the spirit.

Hold on and hang in all. BTW my surgeon in NOVA was Dr.Mark Hartley at Reston. Absolutely superb. Kind caring and a crack surgeon.

Offline redneb

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #8 on: October 24, 2006, 12:05:14 PM »
I can really relate to the hypersensitivity to touch...as I sit here typing away, my jammie bottoms are rolled up to my thigh...can't bear to have anything touch the skin....yesterday wore jieans for the first time and thought I was going out of my mind...I am 6 weeks post op tkr and wonder how long this will last....my husband said to wear shorts but it's kind of hard when the weather report says it's going to be 33 for a high today....I too have noticed heat in the area, which I do ice often...my problem now is sleep-can't sleep...am tired but only sleep for about 3 hours a night....finally got a sleep med-Restoril, but after taking it, it took me 3 1/2 hours to finally fall asleep and then slept for 6 hours and woke up in pain....

I would appreciate any thoughts on the hypersensistivity to touch.

thanks,
red

Offline UK Girl !

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #9 on: October 24, 2006, 01:53:48 PM »
Hi Mejane

I had my tkr on july 10th - I still get some painfull days - and some fab days - my recovery went really well too - I went back to work 3 weeks ago at 12 weeks - and I was absolutely shattered - totally totally - and I am a fit 44 yr old!! - My OS said it takes 8 - 12 months to get back to normal. My knee still gives out loads of heat. Last night was the first night in  - well I don't remember the last time I slept all night - but I slept for 6 hrs without waking - such a good feeling. I am still using tramadol.
Thing is if you have pain you really need to keep up the meds - and 8 weeks in is very early days - I knowyou said you ar
e not overdoing it - but you had MAJOR surgery and it does take time for your body to recover and then for it to build back up to being able to do a days work without being shattered.
My scar too was soo sensitive - my physio said to keep rubbing it, make sure it is in contact with different materials as it is the only way to desensitise it - mine is now fine - get the odd sensitive moment but nothing like it was.

Give yourself a break - I was very impatient to start - but now know it does really all take time.
very best of luck and really hoping it is not an RSD flare up.
anja

1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline MEJANE

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #10 on: October 25, 2006, 02:33:19 AM »
As always, thanks all! I have never done anything like this before..it is kind of neat!

I think we are all thrown by the fact that I had such a terrible RSD experience and that some of these problems are sortof deja vue if you will. And I am certainly disconcerted by my surgeons expectation that I would be back to work FT at 6 weeks if not 8. Say again!! I am no slacker but there is no way. So I have been getting a mixed message. Back to work. O you have pain. Well..go to a specialist.
Is this amount of pretty debilitating pain at 9 weeks or unusual? Is it an RSD re-occurance? Am I a NUt?

So I have decided the pain is the pain and Iwill have to take the time from work to deal with it. For the first time I am finding I need mid-day naps and am  easily  crying at the slighest..think I am just very tired. And so baffled at the treatment.
If  I am back to work and hopping about at 10m weeks am I not normal? LORDIE!

To bed. Perchants to sleep a few.
High winds tonight..Doggies tucking in too!
j.

Offline moonbeam

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #11 on: October 25, 2006, 05:12:58 AM »
 Mejane,
I've never had a TKR and I imagine you still have plenty of pain 10 weeks post op, but never discount the RSD possibility and ask the physical therapist about desensitization, since you're starting therapy again. It's important not to let that pain flare up the RSD.
Redneb,
 I'm waiting for help with this also and as I sit here typing with a hot rice pack on my butt and my capri sweats(all I can wear is sweats) rolled above my knee caps I can relate . However, if I irritate mine by trying to wear jeans I'll spend three days coming down from the burning nerve pain. You asked about the sensitive knee a physical therapist can help with this. Are you done with therapy? I find a hot shower helps after I start the burning. I've also finding hot rice pack helps, moist heat.
mejane,
When do you see pain management again? Alot of pain management docs are using Lyrica. It came out last year and it's the new nuerontin for nerve pain. I'm on Lyrica, tramadol, Lidocaine patches, Celebrex and I've left the best for last Cymbalta. It's like the geriatrics ward at my home every morning with my husband and myself sorting out our pills. Before this surgery I was on nothing. My pain management guy has a theory about strength training that he wants to try .He believes in more weight , less reps brings better results.

Get some rest to you both ..........sweet dreams.

Offline redneb

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Re: 8 weeks post TKR \HEAT and a LOT of Pain\ HX of RSD..Help?
« Reply #12 on: October 25, 2006, 01:37:33 PM »
Moonbeam,
I laughed so hard when I read your "geriatrics ward" statement re your meds....that's what I have...let's see....Celebrex, Prilosec, Cymbalta(wonder drug, if you ask me), Flexeril for the fibromyalgia, baby aspirin, Tylenol #4, Percocet, and now Resotril....my husband only has one....he keeps telling me it's like a friggen pharmacy in the cabinet...LOL....I'm still in therapy and they say I'm doing great...I do massage the scar.........

Mejane,
9 weeks is still early after surgery....remember you had major surgery and as my physical therapist says, "they cut thru muscle and nerves and bone"...it's a big deal...I KNOW how  frustrating it can be...not to be able to do much is what makes me weepy and depressed....and the body needs to heal and that takes time....plus you have other things going on in your body....my surgeon said I might be able to go back to work at 8 weeks, but that would depend on how I was feeling and if I could drive, which I currently can't do....

We have to celebrate the small accomplishments we have....hey, yesterday I was able to walk up stairs with alternating feet like normal, YAY....tried going down the same way, but my flexion is not there yet

take care and thanks,
red