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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 32802 times)

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Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #75 on: September 19, 2012, 11:03:28 AM »
Hi Kaddydee,

You made me smile wryly at the description of the hydro - I thought it was just me being a wimp!!! I had just the same thing, thought it was the abrupt change from the hot water to the cold, in fact I thought they kept the changing rooms too cold and it was a bit much considering ;D Oh dear, I do feel guilty now for thinking that! Thank goodness I didn't say anything!!! I ended up being draped in towels too as I came out too, they were very kind. I really envy you going there, my sessions ended ages ago, but it was the only time my leg really warmed up in the autumn/winter. I've got a heated blanket though, and I sit under that while I'm not doing stuff. Keeping the knee moving is vital, but I have to strike a balance between time upright and time resting it... ::)

I tend to be a cold person, my knee definitely so, although it burns up in the evening on bad days. Maybe that coldness thing is a CRPS thing? I wore a fleece through most of our so-called summer, even when my family were in t-shirts. My house isn't that warm, I'll keep the heating on low though and get some warm slippers and keep moving when I can. Hey ho. I could do with a warm office job!

hope you have a good day today. I'm cold even though we've got nice sunshine here - it dropped to about 7*C last night, proper autumn weather. Even thermal socks don't seem to keep my feet warm. Well, off to put the washing out, tidy up a bit, and then off to a singing group this afternoon. Haven't done it for over a year, so I hope my voice still cooperates!

Take care,

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 #76 on: September 20, 2012, 03:53:36 AM »
Ha Ha! Maybe we are just both wimps!  ;D
I have enjoyed hydro - it's warm, I get my heart rate up and the knee doesn't hurt as much when trying to bend.  I find it soooo exhausting which is sad considering I was super fit 4 months ago.  At this stage it doesn't seem to have made a difference with my ability to bend my knee - still at 45 degrees- but hopefully over time I'll notice a difference.

As much as I enjoy hydro at this hospital pool it takes 2 and a half hours to get there, do the class and get home - twice a week. There is no way I can keep that up once my work starts up again.  I can go to my local pool but I think I would struggle with getting in and out of the pool.  We'll have to see what's happening in a few weeks time.

It's a beautiful Spring day here today.  I've been watching the lorikeets, cockatoos and top-knot pidgeons on all the bushes in our yard while I've been doing a uni assignment.  It's a lovely sight!

have a good day,

kaddydee

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #77 on: September 20, 2012, 09:19:40 AM »
Mind you - my CRPS didn't like the 'hot' bits of this summer either!!!! Can't win sometimes... ::) ;D in-betweeny weather is best I find, although it doesn't like the pressure changes of rain etc too! Lol, what a daft thing to try and deal with.

Two and a half hours to get to hydro is dedication :o That makes it pretty much a day out for just one session! I'm with you on the local pool thing - I chickened out as it wasa just too big and cold, and joined a small health club which has a nice little pool and jacuzzi (hmmm) and gym, beauty treatments place etc. and not too far to walk anywhere, lol. They keep the pool relatively warm (for the oldies I suspect!) so it feels nice when I get in.....have to take a towel though so I can wrap myself up when I get out....brrr!

Seems so strange to imagine you going into Spring now as we're heading for the cold bits. What kind of winter did you have? Do you get much in the way of minus temperatures?! Hope your spring and summer are nice, kind, gentle things....

I'm intrigued by the studying - I studied for a degree in Earth Sciences with the OU and graduated a few years ago. The very word 'assignment' just takes me back! It was wonderful and I really miss it. Every summer, I know the admissions are just around the corner and think about taking a course....but it's not cheap and funds are strained now, so I haven't so far. Hope you're enjoying yours.

Well, best get on today. We finally sold our second car yesterday, so I've got to get all it's documents together for the guy to pick it up at the weekend. Bless it, it was a great car, but I couldn't do the manual gears thing anymore, so we've got an automatic now. I hope it's going to a good home  8)

The dishwasher is quietly gurgling to itself, the cat and dog are both fed and asleep making little contended noises every now and then, and I am off out this afternoon with a friend for lunch and a possible (short ::)) shop. It's sooooooo quiet......just for a while.....

Have a great day and hope the knee is on good form!

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 Nettan

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #78 on: September 20, 2012, 05:36:59 PM »
Hi everyone!

How are you doing ? Thought I would join your discussion.
Am fighting with the hairline fracture that I have on my tibia plateau. And that is the same leg as I have my RSD.
As I'm allergic to all nervpain meds I'm on morphine. So pain now with the fracture has been tough to deal with.
So we took another route and have made one cast that is removeable and I have also gotten 2 new braces.
I use them in different situations and that has made me more able to move then before with pain not pushing up to far.
My painlevels at rest is always around 6. Now with the break have touched 7. When I move around I'm an 8.
As I also have a partial spinal cord injury I'm in wheelchair 24/7. I have now lent another wheelchair with legrest for my left leg and that is also helpful.
Just some words how my life is now.

Nettan
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 Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #79 on: September 20, 2012, 06:31:52 PM »
Hi again Nettan!

Nice to see you on here. That fracture sounds horrible, and scary the jump in pain levels that it has caused. Must admit that I am proper scared about the pain levels should anything else happen to my knee. I know you can't live your life being scared in case something goes wrong, but the pain I've had just from minor bumps and scratches gives me enough of a clue that the CRPS really does ramp things up! Pesky thing.

Have you always been allergic to the nerve meds or has that happened gradually? Can't imagine being without mine now - if I forget to take one I really know 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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #80 on: September 20, 2012, 11:20:49 PM »
Hi Nettan,

So sorry to hear about all your ongoing problems and pain.  RSD and your allergies really complicate things for you - not nice!
Looking at your knee history worries me - I started off with a partial meniscectomy and have had 4 operations and will need more.  It's crazy that something so simple can lead to so many problems!

Lottie - great to hear you are studying Personal Training.  You'll have a real understanding of clients with pain or chronic issues.  There's not enough personal trainers out there with that understanding.  Enjoy!

15 years ago I did a bachelor of music in piano performance.  Since then I have taught piano and run little children's music classes - I love it!!!  At the moment I'm doing my post grad diploma of early childhood education (a real mouthful!).  3 subjects to go!  I started the study to give me more knowledge in my other work but I may end up teaching if my knee continues to give me grief.  My kid's music classes are very active - I jump like a frog, run like a puppy, crawl like a caterpillar.  If I can't demonstrate it is very hard to run an effective classs.

I was also doing gym instructing before I hurt myself.  I don't think I will go back to that.  Thankfully, I have my music to depend on.  As long as I can play piano and sing I will be happy!

It's my big day today - physio and then hydro - and then I can rest and enjoy the weekend.
THinking of you all,

Kaddy

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #81 on: September 22, 2012, 06:50:54 AM »
Hi Ho!

Another question for you all....
I've been reading about the 3/4 stages of CRPS.  Stage one has burning or aching pain, skin changes, spasms, rapid hair growth, skin sensitivty etc  I've got all of these things in varying degrees.

It says that this stage lasts for 1-3 months before moving on to stage two.  However some people remain in this stage.  I've also got the muscle atrophy and joint stiffness that can be found in other stages.

From your experience, have you stayed in stage 1, moved to other stages or didn't follow any stages at all?

I am a bit scared what will happen if I move to stage two......

The one thing that I'm holding on to is that my pain levels continue to be under control.  My knee aches but it is not bad - nothing like I experienced for the first 5 weeks.

One negative is both my phsio and hydro physio said yesterday that we won't get any bend back until I have a MUA or more surgery.  This is what I had thought but I was hoping that something amazing would happen and it would start moving by itself.  I am really starting to get worried about the pain that might happen after another procedure! :(

Still trying to stay strong...just having a bad couple of days.  Even chocolate is not working :)

Hope you are all having a better day.  Enjoy the weekend!
Kaddydee

Offline RLE

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #82 on: September 22, 2012, 07:41:48 AM »
What kind of doctor diagnoses CRPS? Or is it the OS who does it?
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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #83 on: September 22, 2012, 08:05:27 AM »
Hi RLE,

In my case the OS said I had CRPS - he'd been inside my knee 4 times and said there was nothing mechanically wrong and could only explain the pain, stiffness and sensitivity as CRPS

My hospital pain DR disagreed - he thought there was something mechanically wrong.

My physios (3 different ones)  all suspected CRPS but aren't qualified to label it.

My local DR said she is not qualified enough to comment.

Does that answer your question?!?!?!?! 

I may have it, I may not.  Time will tell


Kaddydee

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #84 on: September 22, 2012, 10:17:42 AM »
Ha Ha
I too have thick black hairs growing out of my knee - the rest of my legs are thin blonde hairs!  Very attractive!!

You're right - at this stage it is too hard to tell what is CRPS and what is repeated surgery.  Cramps are a wierd symptoms though...

Fashion parade sounds fun. Enjoy yourself and forget about all of this stuff

Spring has well and truly sprung - hottest day so far!

Better go do this uni assignment.  Grrrrr

Kaddy

Offline zecrich

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #85 on: September 22, 2012, 10:23:02 AM »
I am now 2.5 years post TKR and I have CRPS, it was my 13th knee surgery and I am in chronic pain 24/7 and use a wheelchair. I wish I had never had the TKR as I am so much worse, please please think it through very carefully
If it hurts, you're still alive!

Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #86 on: September 22, 2012, 10:32:50 AM »
So sorry to hear of your pain Zechrich!  Sounds awful - it must be sooooo hard living with that constant pain.

CRPS can impact people's lives in such a negative way!  I've only lived like this for three months and I've had enough! 

I really don't want to have another procedure but my knee only bends from 15 degrees to 40 degrees and the physios can't get it to move at all.  I can't live like this......but I don't want to live with full blown CRPS either.  What can I do but hope for the best?!?!

This time I really am getting back to Uni....

Kaddy


Offline zecrich

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #87 on: September 22, 2012, 11:10:55 AM »
I get the CRPS pain and I also get a mechanical pain when I move my leg, yesterday I asked the doc about amputation as I think I might at least have a chance to fight back but he said no!

I agree it is very difficult living in constant pain and its made worse by having no sign of recovery, I spend 99% of my time laid up but when I do get a lower pain day, I make the most of it and with the help of family, I go kayaking, I only last about 30 minutes to an hour and I have to use outriggers to stabilise the kayak, after this my pain levels shoot up and I pay the price but its worth it, its good to feel alive even if its only for a short time.

I hope you find a way to get to uni, its very important to keep focused otherwise the fight is that much harder

Zec x


If it hurts, you're still alive!

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #88 on: September 22, 2012, 12:30:57 PM »
Hi everyone,

Crumbs you lot have been busy! I've had two days from hell so haven't been about as much. It's a bugger sometimes this danged thing...

Hi Zecrich, good to have you posting on my thread - its so helpful to hear from others who have this in their knee. It's such a nasty condition to have, and knowing that someone else understands what you're experiencing is a real help. 13 knee ops sounds terrible anyway, to end that lot with a TKR that left you with CRPS is just, well, mean. Know what you mean about stuff that lakes you feel alive - just feeling part of life itself feels like a mountain climbed some days! I would massively read up on CRPS and amputation before even thinking about it. Amputation can make the pain worse, and cause the CRPS to spread. It does help for some peoplle, but the odds are not great, and it's a huge risk. I hope you have a better day today  :)

Hi RLE - my surgeon diagnosed CRPS about two months after he'd done my arthroscopy. On the two appointments after the op before that, he couldn't understand why I was still in so much pain from a 'simple look-around, tidy up and biopsies'... ::) When I saw him at two months my knee obligingly was stone cold and purple and looked like a piece of meat, and after a few pointed questions he was pretty darn definite. I then saw a physio (at hydro, lol, my land physio didn't know about it!!) who confirmed it, and my GP who confirmed it. I think it's normal for people to see several docs before its diagnosed, so I suppose I was lucky it was recognised quickly.

Hi Kaddydee! How are you? I understand from a lot of reading about that the so-called stages of CRPS are a bit flexible or ignorable to say the least, and most docs have abandoned the idea of them all together now. The important bit is to start treatment ASAP and not hang about for months. Whether you get that or not depends on your doc unfortunately, and some are more 'wait and see' than others. Good for you, going back to uni. I was talking to my husband last night about the fact that I needed a focus or I was going to go mad. I might start another OU course, maybe history or something - I've done nearly all the science ones!

On the subject of symptoms, yes I get the thick black hair thing too, especially right on the front of my affected knee. On the other hand, I've got less hair on it generally, including my shin. Not a good look! I used to epilate before my op, I daren't now!! I also increasingly am getting cramps and tightness in my leg muscles, so I do a lot of stretching to try and ease it. Doesn't seem to work in terms of the discomfort, but not doing them doesn't seem to be a good option either!

Since my long long day at the Paralympics a couple of weeks ago, my CRPS has been a lot worse and is definitely in flare mode. My whole foot swells and goes red now, and my knee is either icy cold or hot and red, nothing in between. I'm fed up generally and hacked off with the damn thing and wish I could have my old knee back!!! Not much point in that thought, but some days you just can't help it. I'm pretty cheerful about it all generally, but this is just relentless. I've got an appointment with a specialist pain physio who specialises in CRPS on Monday, and I'm really hoping that she has some good ideas and can give me some practical advice. My pain doc is so annoyingly blunt, just says things like 'well it's best not to think about the future' and (when she had confirmed it had spread to my foot and I said I was worried about it spreading elsewhere) 'it's not really helpful to think about that'. I mean WHAT?!!! And I don't know who else I was meant to mention my CRPS worries to!!

Lol, you have to laugh sometimes. I told her I couldn't wait to see someone who actually knew what CRPS was as my new GP (mine retired) and my land physio knew nothing of its existence at all! My GP actually got his book down and looked it up! Oh how rare and special we are.... ::) ;D

We have made Friday nights movie night in the house now, and have a list of what me and my husband consider classic (lol) films like Top Gun, etc. that we feel our children should see. Last night we all watched The Truman Show and our daughters really enjoyed it - my youngest, going up to bed afterwards, stuck her head back round the living room door and said 'good afternoon, good evening and good night!' ;D Bless.

Hope you all have a good day. The sun is shining after clear skies and it being flipping cold last night, so it looks very idyllic out there.

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 #89 on: September 22, 2012, 04:27:01 PM »
I know foot crps isn't quite the same as knee and hope my waffles don't seem.too irrelevant or preachy. This things sucks what ever bit it attacks. Hugs to all body bits

Lottie. X
« Last Edit: September 22, 2012, 06:20:56 PM by Lottiefox »
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....