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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 32803 times)

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Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #90 on: September 22, 2012, 05:26:21 PM »
Not at all Lottie! CRPS is horrible anywhere, I think we all know that, and anybody's experiences and opinions are useful when you're fighting through the fog....

Yes this thread is aimed at the knee and CRPS unhappy union  ::) but it doesn't mean you can't post on it!

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline RLE

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #91 on: September 22, 2012, 11:45:28 PM »
Sorry, another question. Does CRPS move around or does it stay in one spot? I know it extends like from the knee up and/or down. But if it's on one spot on the knee can it go to the other side while the pain leaves the original site and that site is now without pain but the other side now hurts?
Accident 2011: permanent dislocation, hole under the patella, bone fragments/debris embedded, scar tissue, 3 torn ligaments, fracture, cartilage sheared off, contracture,
2011 MUA
PT on-going
2012 MPFL reconstruction,TTT
        TTT
        Lateral lengthenin
        Arthroscopy/clean out
Thx Dr. T

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #92 on: September 23, 2012, 12:09:03 AM »
Wow. I'm not exactly sure on that one RLE. I have read quite a lot aout CRPS now, and i know that some people have pain that spreads and moves to another area - but ive not heard of it then leaving the original site pain-free. It can stay in one discrete area and never spread (isolated), it can spread to an adjacent area, ie from knee to foot like mine, or it can start up in the opposite joint (mirror type spread) - ie from left knee to right knee. Some people can end up with whole body CRPS, but that's pretty rare and is usually the poor folk who were diagnosed very late and didn't get treated early on.
As far as going from one spot on your knee to the other side of the same knee....that sounds weird! Is that a long-term thing, or within the space of a few days or hours? I've had patches that have strangely been unaffected during a particular episode - had a spot in the middle of my knee once that was completely normal, while the fire ranged all around it. Very peculiar. Be interested to hear other people's experiences on that!

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #93 on: October 28, 2012, 06:24:27 AM »
Hi guys,

What would I do without Knee Guru?  I've learnt so much over the last 5 months about meniscus tears, plicas, CRPS and arthrofibrosis (and lots more). 
Since I last posted, I've been told I have got arthrofibrosis - still only 20 degrees movt (25-40), fully stuck patella, very weak quads and the feeling that my knee is stuffed full of tissue.  The positives are that I'm limping with one crutch, driving again, sleeping pretty well, back doing music classes and feeling generally pretty happy.  Being off pain meds helps a lot.
I saw my OS on Monday and he's really scared to touch me.  He said I need at least a LOA (lysis of adhesions - arthroscopic surgery) but doesn't want to because he is so scared of how I will react.  So, I'm booked in for a MUA (manipulation) for mid Nov even though, last visit, he said he doesn't do MUA's after the 3 month post-surgery mark and this will be 4 months post surgery.  He did say that it will be an aggressive MUA and that I will be in hospital for at least three days and that the pain Drs will be ready for me. How comforting! 
After all my research I know that I need arthroscopic surgery (not an MUA) but if the Dr's not willing to risk it then I guess I have to try an MUA first.
Have any of you had AF and CRPS? How have you dealt with surgery? How did you stop the cycle of inflammation/pain and the excessive growing of lesions/tissue? 

I'd love your support on this one.  I'm feeling a bit overwhelmed by this!
Kaddydee

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #94 on: October 28, 2012, 11:06:31 AM »
Crumbs Kaddydee, sorry you've got AF on top of the darn CRPS... ??? As if one of them wasn't enough!

Good to hear you're generally feeling a bit perkier though, positive thinking and all that jazz... ;D

I chuckled whn you said about your OS being really scared to touch you - mine is just the same! He's said he won't go anywhere near my knees until they both have a TKR. Nice.

As I understand it, the aim for CRPS area surgery is to minimise the pain signals so that your already heightened pain network doesn't go into overdrive, also it is particularly important (both because of the CRPS and scar tissue growth) to be able to get the knee moving ASAP after the surgery - and if you're in too much pain you won't be able to. If a procedure is likely to cause serious pain to a normal person (lol) they might decide to use a nerve block in the thigh which stays in place for a few days afterwards, or an epidural before and after, both of which block all pain signals from the area. The downside is not being able to feel your leg/s for a while  :o There are other options too, but the main aim stays the same. The idea with CRPS, from what I've read and been told, is to have a pain management plan for the procedure - ie, what if anything they will do beforehand, handling the procedure itself, and how to control the pain in the first few days post-op, and then longer-term. You as the patient should ideally be involved and aware of what is going to happen. Personally, I don't think being told that the pain docs will be ready for you post-op is enough info!! It might be worth a phone call to your OS's secretary and asking for details of what they plan to do pre and/or post-op as you're concerned about it. If you're going to wake up with a nerve block in place, it would be nice to be prepared... :)

If you use this site's search box, there's at least one person who had major surgery with CRPS, they might have put some info on it. I think one I read about was a TKR, and from the little I remember I think it went ok pain-wise.

Try not to worry - if your OS is scared of the CRPS then he will be putting serious thought into even an MUA!! I'll be keeping my fingers crossed for you.

Well done on the music classes and everything else, it's good to do anything I think! I've started singing with a local choir again and it's lovely to just get out. If only I could find a job it would be even better! I'm seriously considering going back to a crutch as my knee is not so good at the moment and with the cold it seems to be even worse. I slipped on some stone flags last week and managed not to go over, but it shook me up and made me realise how precarious I am right now. The thought of a fall is NOT good!!

Take care of yourself,

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #95 on: October 29, 2012, 04:25:02 AM »
Hi Brams
Thanks for your ideas/support!
 I will see the OS again next week and he said that he will have a detailed plan for me - I'm assuming that will have pain control as a part of it.  I always seem to walk out of OS appointment with more questions than answers.  My OS gives the info so quickly I think I miss a lot of it and then have to go home and research!  I had one orthopedic resident in hospital who was excellent as she spent lots of time with me explaining every issue clearly.  If only they were all like her....
Had to let you know that I can now get out of the hydro pool without spasming or going into shock!  I knew I was getting better when the sensitivity to cold  didn't effect me.  I'm no longer a wimp!!!
So glad you are part of a choir - music does wonders for the soul.  The longer I'm injured the more I'm turning to music.  Unfortunately I can't play the piano yet because my knee can't bend under it but I am finding I'm singing more and even writing kids songs again.  I've got to find the positives in all of this!
I'm going to try a body pump (weights) class at the gym tonight.  I can't squat or lunge and I have a lot of difficulty getting down to the floor but I'm determined to give it a go.  I really miss my gym classes and my gym friends!
Have a good week,

Kaddydee

Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #96 on: October 29, 2012, 01:29:02 PM »
Kaddy

There is a KG member silver14 who also has AF and CRPS diagnosed this year. She has a thread in the AF section but I don't know how often she visits at the moment. If you want I can send her a facebook message as we hooked up on there. I hope Body Pump was good. Great to try these things - I bet you will feel fab having done it even if the leg work and the getting up and down is tricky. The whole social side is equally important. I am sorry you've been told you have AF too but it sounds like much of your CRPS might be improving - I also noticed you said you are not on pain meds, this is a big step with CRPS control so soon on. Good luck and keep us posted

Lottie  :)
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #97 on: October 29, 2012, 04:18:45 PM »
Hi Kaddydee,

Know what you mean about the questions thing, I usually end up sitting in the car park afterwards thinking of all the questions I should have asked.....grrrr! So frustrating! I always record my appointments now (just on my phone with an app) and go in with any questions on a bit of card. Mind you, even then something will come up and I don't get the chance to think it through until afterwards! :-[

I am so pleased that your body has got used to the hydro! I know that the reaction thing used to worry you, as it did me, so you must be stoked that the awful shaking and shivering thing is giving you a break now. Hurrah! Any tiny step up is so great... ;D I am hoping to start hydro privately soon, as i swear it was only the hydro that warmed my frozen knee at all during the winter months! I can't imagine not having it when everything is so cold outside....

I play the piano too! I have to stick my leg out to the side sometimes when things are bad, but playing does take my mind off it a bit... I'm lucky it is my left leg affected, so I can still use the sustain pedal! What sort of music do you play? I play mostly classical, but I'm hooked on some of the musical pieces at the moment, Andrew Lloyd Webber stuff, Phantom of the Opera etc. Fun but lightweight! I like playing Einaudi, and my daughter is hooked on his work - sometimes when one of us gets up off the piano, the other sits straight down! Otherwise, I play Debussy, Mozart etc. I hope you can play more again soon, it is,mad you say, good for the soul :)

How did your gym class go? It's great that you're doing that, I'm quite envious! I go to my gym, but haven't summoned the courage to do a class yet! If you're go well, I might try one... :o ;D

Take care in the meantime,

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #98 on: October 31, 2012, 08:13:44 AM »
Hey Brams and Lottie!
Since I last wrote everything has changed!  I am no longer having an MUA mid Nov but now having arthroscopic surgery to remove all the tissue/adhesions (LOA) and MUA.  It's been all a bit confusing because I'm working with 2 OS's.  My private OS works only one day a month at the public hospital so when he's not around I have to see another OS, who then reports to my private OS.  Last week I met with the public hospital OS and I really didn't feel confident with his idea of an MUA.  I emailed my private OS and he came back saying that an MUA wouldn't be effective and we need to do an LOA.  First though I need to come off my blood clot medicine - grrrr!  And then I need to get on the waiting list for surgery - hopefully not too long!
Lottie, I do feel fortunate that my CRPS pain hasn't continued.  My leg aches all the time and I get a lot of mechanical knee pain whenever I try to bend it but I can live with it.  I had weeks of not sleeping and feeling really anxious so I came of the pain meds and now I'm sleeping well and feeling really positive.  I'd rather put up with pain than feel tired and anxious.  Having said that, there was no way I could have lived without pain meds in the early weeks - I'm just lucky that that pain didn't linger too long.
Brams, I grew up as a classical pianist - even did piano performance at University.  I loved the Romantic music - Brahms, chopin etc.  Since having kids I don't have time for hours of practice so I tend to play more popular music - lots of wedding music/background music.  My favourite thing to do is to sit down and improvise - everyone can tell how I'm feeling by the music I'm playing!  My daughters love Taylor Swift so I'm teaching them how to play that at the moment - all a bit of fun!

My Pump class was great! I didn't squat or lunge, I needed help from 2 people to set up but I worked my arms, talked to lots of people and sang along to the loud music - it was good to be back!!!
OK, better go...time to put kids to bed.  Always a nice time of day.
K

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #99 on: October 31, 2012, 01:44:59 PM »
Hi Kaddydee!

Lovely to hear you sounding so happy  :) I'm glad you have a clear plan now and are happy with it, that's worth gold all by itself! Am wowed that you are a classical pianist with performance experience :o I shall keep very quiet about my lowly standards, lol - I've never even done any grades, but was assessed at school as Grade 4 so I hope I'm about grade 5 or 6 now! I think playing helps to keep your brain a bit sharper and away from the CRPS fog, it definitely helps me feel brighter too, if only it could take the pain too!

I know what you mean about the pain meds, I find it bad enough taking the Lyrica and amitriptyline for the nerve pains, if I added in pain meds I'd be a regular zombie - ok for today, lol but not long-term... 8) I had my wheelchair assessment today, and I said to the therapist that I'd rather be me in pain, than a drugged up zombie in less pain but able to do less in terms of actual living. I've finally got my voucher and green light, so I'm going to the stockist to order it this afternoon - I'm quite excited!

I'm glad your gym class went well, I promise I'll have a look at the board at mine and have a go at something... ;) I'm off for my concert tonight - we're singing Mozart's Ave Verum Corpus, the Sanctus, Nella Fantasia, And The Glory of the Lord, and then a choral arrangement of Fix You by Coldplay! Bizarre, but it's actually very nice to sing and sounds amazing. Bless him, our choirmaster is very Gareth Malone-y, young, dark haired, easy on the eye  ;) and very enthusiastic and passionate abut his music - he sings professionally in a quartet all over Europe, so I think we're very lucky really. I'm nervous but excited too. Wish the ami didn't make my mouth so dry! I have to keep a bottle under my chair...

Anyhoo, take care of yourself and keep up the good news. I like  :)

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #100 on: November 03, 2012, 04:59:09 AM »
Hi Brams,

How did your concert go?  It sounded like a great programme.  If my knee doesn't get any better I think I'll join a choir too.  The last time I sang in a choir was when I was at Uni, 14 years ago.  Since then I've lived in a small country town with no choir, had kids and then discovered I loved exercising and doing adventure races.  If I can't spend hours exercising then a choir would be where I'd choose to spend my time. I don't know if I've said this before but one reason I've stayed so positive through all of this is because I know I have my first love, music, to return to.  

That's exciting news about the wheelchair.  What sort are you getting?  I'd love to have one so that I could go on family walks and bike rides - that's what I've missed most over the last 5 months!  We have a great foot path at the back of our house that runs along a creek and is really bushy.  It was so nice on weekends to walk along the path and see the different birds and get some fresh air.  It's very hard to get that same experience if you can't walk or ride.  I'll see what happens over the coming weeks and it might be something that I look at in the future.  Time will tell....


Hope you are enjoying your weekend.  
Kaddydee

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #101 on: November 03, 2012, 10:41:44 AM »
Hi Kaddydee,

Oh my word, get one! I've used my wheelchair twice now and I love it. Yesterday I actually went shopping with my family for some outdoor gear for my husband and daughter who are really into their rowing (but dont want to freeze on cold mornings like today  :o) We went to a huge store that I just wouldn't go near these days, and I browsed for the first time in ages! Could go off by myself to look at things, didn't have to look for seats etc...it was great. There are so many things that I've just stopped doing - shopping trips, walks to just look at the world  ::), going into town to look around shops etc, not to mention the stuff I still can't do like the sports I loved  :( Oh well, you just have to find new things, I know... ;)

When I had my assessment, I had a long chat with the therapist about the whole wheelchair psychology issue (I may have mentioned it before, lol). She said everyone goes through it, feels like a fake, doesn't want to be seen as 'disabled', worries about people's reactions, etc... She said people who know you will get used to it very quickly and just see you as you still, and who cares what strangers think! I thought that was very wise. Anyway, having gone out twice in it (to fairly anonymous places to start with, my high street has to wait until I have more confidence in it on wonky pavements!) I would say don't wait. I've wasted a year when I could have been doing things that ultimately make me feel normal and like myself again. Yesterday, I almost kind of forgot about how I was getting around, it was just so nice to do it!! :) Just don't get a cheap chair off the Internet like I did initially - disaster. Cheap, heavy, badly made, off balance. Put me off the whole idea again for a couple of weeks.

I got a voucher towards my chair from the NHS, after going for a wheelchair assessment, then I ordered one from a supplier in a big mobility store. I got a low to mid range model, a basic chair, but the frame is aluminium instead of steel, so it's a bit lighter. It's still a bit of a heft to get into the boot, but I can do it by myself if I have to, and the wheels pop off to make it lighter as well. Mine is currently in the boot of the car, which is with my husband at rowing  ::) so I'm not sure of the make and model!! I'll let you know...

The choir performance was great. I thought we sounded amazing at some points - not all, mind! but we do have quite a lot of kids involved, and some are like deer in headlights when we perform, bless. It's such a rush to perform, not like the adrenaline rush I got from my tennis etc, but a decent proxy... I highly recommend it. I did suffer a bit through the performance as we were meant to stand through it all, but our choirmaster knows of my problem and he is fine for me to sit down if I have to, as long as I don't change my mind half way through a piece! I think as long as you are upfront and don't pretend to be 'normal' lol ;D most people are very accommodating. I stood for more pieces than we had planned, just because I wanted to. I paid the price that night and the next day, but it was worth it, and the applause was better than a painkiller!

Later today I'm going to do my first supermarket shop in a while with my husband in a big place where I'm more likely to meet someone I know... :o  8) Looking forward to it as well, how sad is that?! I'm sure the novelty of food shopping will wear off again, lol. Then tomorrow the family is coming here for a big roast tea, which is always rowdy and lovely and cosy :)

Have a lovely weekend, and I hope the knee behaves itself! Mine have been rubbish recently and the CRPS has been flaring regularly, but I'm hoping it'll calm down now. I'm off to see what my youngest is up to in her room (lots of banging!) and then the joy of laundry and tidying. Oh the fun and games!

Take care and enjoy the sun of you have some!

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline piglet46

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #102 on: November 06, 2012, 05:48:34 AM »
Ideveloped RSD after my second medial femoral condyle bone graft in Sept 2012. I am 7 weeks post surgery ( left knee AVN diagnosis 2008 , this is 5th surgery to correct AVN) and my shin is numb and my foot feels like a block of ice. Have been told it"should" get better once I can start bearing weight, but no idea when that will be. Previous allograft died due to bone failure to re-vascularize. The surgeon has no idea if this autograft will be successful .
Anyone else had simiilar problems? Would love to know how others proceeded next

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #103 on: November 06, 2012, 09:26:56 AM »
Crumbs piglet46, sorry you've got RSD/CRPS now following your bone-graft  :( that's not nice on top of dealing with a 'normal' recovery too. Hope you're feeling ok today and it's not hurting you too much - I know the cold icy sensations hurt anyway... I don't have any more than sketchy knowledge about bone-grafts, but I know they can fail. You must have everything crossed that this works, I'll hope for a good outcome for you!

CRPS 'can' indeed resolve if recognised and treated quickly, as yours is hopefully being, but it's a tricky customer and sometimes you can do everything right and still have a fight with it... It's really important to keep the joint moving, with the aid of stronger painkillers if necessary. Whatever allows you to do the physio  ::) Must be a nightmare being non-wb for now, but even gentle movements make a difference. Just don't let your knee be still for long periods of time, as CRPS doesn't like that - It does seem harsh sometimes when all you want is to rest it!!

Are you on any medication since your diagnosis? Amitriptyline, pregabelin or Gabapentin (lyrica) are all typical ones as they are used to treat the nerve-pain, sometimes with pain meds on top if needed. When my knee or foot (or both) go icy-blue, I have a little warm pad that I put on, alternating if they're both playing, lol. It helps with the worst of the cold, which seems to help the deep pain. When they're red and hot, Epsom salts are the thing - you can get them online (unfragranced) fairly easily. They work as calcium channel blockers, or something like that  ;D and ease the pain as well as cooling things down. Magic stuff! I cut out the back of one of my kids' t-shirts, damp it with cold water and lay a 2-inch-wide line of the salts along the middle, then fold the cloth up in fish'n'chips style, lol, and lay it on my knee. A damp sock with the stuff in works for the foot. Ah, the glamours of CRPS!! 8)

I guess you're just in a waiting game now as far as the graft goes, and time does drag ::) What stuff are you doing to pass the time? Good old tv, movies, music, computer, games, crafts, reading? Wild parties?! Hope you can keep occupied, I know sitting being bored did zero for my mood! I'm thinking of starting a uni course (from home of course, lol) to keep my brain from seeping out through my ears.... :o

Take care of yourself and I hope things improve quickly for you, let us know how you get on.

Brams  ;)

2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #104 on: November 06, 2012, 02:24:09 PM »
Welcome piglet

Sorry you have to join the RSD club. Brams gives sage advice, and yes it can indeed resolve or improve if its caught early and things can be arrested.....but it does have a way of being SO different in every single person it is hard to know what might happen. As Brams says - activity is vital as much as you can manage. I have it my big toe, the joint and other 3 toes and sometimes in my forefoot. If you can. try and work the toes on that foot. Mine got worse when I held my foot so still and stiff. Can you do ankle pumps? Ankle rotations? Can you try and squeeze your toes onto something on the floor even if not weight bearing? e.g.a small ball. Can you tie a little theraband around the toes and try and flex and bend them against it? I had to do that 100 times, 3 times a day as my big toe had solidified at the top joint. It hurt like heck but it now moves freely.

Good luck with the graft. Waiting is horrible and dealing with RSD on top of the AVN seems very unfair. Keep us posted

Lottie  :)
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....















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