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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 32761 times)

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Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #45 on: July 21, 2012, 11:52:59 PM »
Hi fluttersby,

Don't worry about the venting thing, I think that's what KGs is for!  ;D

I understand the fear of going out, but you have to try to ignore it otherwise you can end up being afraid of every situation and not doing anything. Things only get worse from there.  You will get used to the weirdnesses of the crips and be able to deal with it better, getting some decent treatment is the first step. Might be worth going to see your GP and asking to be started on one of the magic three in case the diagnosis is confirmed.....amitriptyline, pregabelin (Lyrica) or Gabapentin. I had some relief within three days when I started it, it's made all the difference. I still have some pain, but it is much less and behaves itself slightly more.... ::) Early treatment is key, so push for them to try something rather than keep you waiting.

It's important to keep doing your PT as much as you can, CRPS and inactivity are a painful combination. Sadly, R and R don't work with this!

Take care and have a good weekend. The nice weather has finally arrived here (long may it last...) and the smell of BBQs was everywhere this evening!!!

Brams  ;)

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 fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #46 on: July 23, 2012, 03:46:04 AM »
I have been on Neurontin already for awhile for fibromyalgia, although a pretty low dose. No doubt it needs to be increased. Lyrica does NOT agree with me--caused so much fluid under my skin I couldn't stand it and couldn't remember anything either. Thank God I have a pretty much standing script for Norco or I would be going crazy. I know some people don't agree with opoid meds, but it's been a lifesaver.

I have the bonescan tomorrow, so things are rolling in the right direction.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #47 on: July 23, 2012, 10:20:19 AM »
Eek! That Lyrica reaction sounds horrible... :o Glad your bone scan is at last here - hopefully it will be able to answer a few questions. Hope everything is well and healthy!

It's suddenly summer here and the temperature has gone up by ten degrees in a couple of days - don't think the crips is keen at all! Luckily we still have a nice cool breeze, which I think has stopped things kicking off more than they have... ::) I'm finding that I burn very easily now, so the factor 50 is being kept busy. Pain in the a*#e!! ;D

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 fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #48 on: August 03, 2012, 01:01:05 AM »
I haven't replied on here in awhile, but now I finally have some news. I had a bone scan, but it was negative for any changes. I also finally went to a pain specialist today and he officially diagnosed me with RSD. I'm not happy about the diagnosis, but I am glad that now things can move forward. I get my first sympathetic nerve block tomorrow. I think  I got a really great doctor. He is coming in on his first day of vacation to do my block and he said he will make sure worker's comp doesn't give me any trouble over this.

I am hoping I get some relief from the block.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #49 on: August 03, 2012, 01:24:23 PM »
Hi again!

Well I'm really sorry that you did get the diagnosis, but as you say - at least you will get proper treatment now. I'll have my fingers crossed for you with the nerve block... Please let me know what happens and if it does help, because it's something I haven't been offered yet, and if it really works it might be worth pushing for!

Take care of yourself and keep that knee moving, CRPS hates sitting about!! Darn... ;D

Off to do some tidying and practice what I preach!

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 fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #50 on: August 04, 2012, 05:11:57 AM »
The nerve block actually did help. Immediately after I did't have the sensitivity. It's been pretty good all day with just small bouts with the pain, nothing like before. But now it's almost worn off I'm afraid. But this is good, it means I have a good chance of responding to the blocks. By the way, it was painful to me anyway. I did have some sedation==versed and fentanyl.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #51 on: August 04, 2012, 11:31:58 AM »
As you say, it's good that they now know your pain is sympathetically maintained, they can target your pain relief more successfully (hopefully!!). Ouch though, it sounds like it was a painful procedure. Do they ask you to stop all meds before they do it? I completely forgot my meds a couple of days ago - I went away for a night with a friend and just forgot in the distraction of the journey on the first day - and really paid for it. Made me realise what those meds are keeping at bay. Scary stuff.

We're completely rethinking a holiday we had planned for next year....the crips didn't like travelling or heat!!

Glad your doc is a good guy - I'm still trying to find one of those ::) Seeing a different doc in the same hospital next week, I have everything crossed that they're not a cold unsympathetic woman like my pain doc at the moment... :-\

Trying to galvanise the children into helping with the housework today....hmmm. Optimism all the way!!

Have a good day.

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 fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #52 on: August 05, 2012, 03:56:55 PM »
The only meds I would have had to stop would have been like NSAIDS or anything that would thin my blood. Man, I can't type anymore. I used to type 90+wpm but now I am so dyslexic with typing and leaving out letters, etc. I think it must be CRPS related. I've heard it makes cognitive changes.

The block did help me for that one day but of course I couldn't do much with my new found pain relief because I was supposed to take it easy for a few days and I couldn't drive for 8 hours. I am back to the old cripsy self now. I go back for the next block this Thursday.

I can't imagine going somewhere and forgetting my meds. That had to be an awful trip.

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #53 on: August 10, 2012, 02:13:37 PM »
Well, the 2nd block actually seemed like it was going to be more effective than the first. Immediately after, my whole leg got hot and pinked right up with improving blood flow. Of course my back was sore where they did the injections, but I had no RSD pain----until later that afternoon when it crept back in. Not sure what will happen now. I don't know what worker's comp is going to approve but I know the doctor is starting to talk about longer acting pain meds (thank God) or the fentanyl patch.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #54 on: August 10, 2012, 03:51:23 PM »
Hi fluttersby,

Wow, that doesn't seem long for the block to work - is it meant to last longer or is it just a diagnostic thing to see if it's sympathetically maintained? Hope they can now sort you out some form of pain meds that don't involve having needles stuck in your back every few days... ::)

I've been reading up at the brain changes with CRPS, some very weird stuff - one recent study said that your ability to make reasonable emotional decisions is affected, as well as quick mood changes with anger and frustration, also the good old confusion, speech issues and language hiccups. All sounds about right... 8) I suppose it's good to be aware of these things.....

It's really hot here at the moment - I'm wilting a bit to be honest, it seems to make my foot in particular much worse, and I burn VERY quickly now, so I can't be out in it too long....grrr!!!

Take care and good luck with the pain meds.

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 #55 on: September 03, 2012, 04:16:13 AM »
Hi everyone

I'll join in....
I have just been diagnosed with CRPS.  After 4 knee arthroscopic surgeries over the last 3 months, 3 and a half weeks in hospital with unbearable pain (and blood clot and staph infection) and a knee that refuses to bend the OS has finally named it as CRPS.  The OS said he suspected this a number of weeks ago but had to wait for all my other problems to settle down before he could say anything.

At my worst, my pain caused me to scream and cry all day (and an ambulance trip to hospital) - I couldn't move or touch the leg without spasms of pain.  Now, I am on Kapanol and Endone through the day and night and I can live with the pain.

The main concern now is that my knee is so stiff that it refuses to bend.  I have had 4 weeks of physio and made no improvement at all!  I am also having trouble weight bearing through the leg b/c of pain so it will be a while before I get off the crutches.

At this stage I am just happy to have a 'name' to my problems.  I need to go read up and talk with pain DR and physio about what the next stage is.

I'll read through this thread in more detail as well.....

A big Hi to Lottiefox who has been encouraging me on my post op thread.
Kaddydee (Katherine)

A

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #56 on: September 03, 2012, 11:13:28 AM »
Hi Kaddydee,

Sorry you've been diagnosed with CRPS in your knee......bloody thing  ::)..... Still, as you say, at least you know what it is now and can do your research and find your way through the fog. You'll get there. I remember all too well my first couple of months out from my arthroscopy when doctors, physios, surgeon et al, all were scratching their heads and saying I shouldn't have that much pain after a 'simple' arthroscopy with its attendant biopsies and debridement..... An infection and blood clot on top sounds like hell - no wonder your poor knee is in shutdown.

Sigh. Ah well. At least, having been diagnosed, you should now be able to start on the journey back to reality! The biggest thing I've found with having it in my knee is that you have to keep it moving - for you that means that somehow you will need help to start the thing off, and that means pain meds and a good physio who knows something about CRPS. I had a lovely physio but she didn't know a thing about the crips, and was a bit scared of it. Most sessions we didn't do many exercises, just talked and planned. That in itself was helpful, but I'm waiting now to see a pain management physio with a special interest in CRPS. At last! Well, at some point hopefully.... ;D

You do really have to push for everything. Docs will hang about waiting to see what happens before making decisions, which can mean two or three months between appointments and decisions - and before you know it a year has slid by. I've not met many who actually know what it is, so you have to do some kind education along the way and explain stuff, which seems very odd.....I'm sure it was meant to be the other way around!

I would really really recommend a hydrotherapy course - it was the thing that turned the corner for me with movement. The warm water is very soothing, the people knowledgeable and kind, and the exercises gentle. You dose up on painkillers just before, are assisted into the water, and get kitted up with floats and things to help with the movements. They're very gentle to start with, but they will get your knee moving if anyone can. Along the way, the physios have been the ones to actually DO things and teach me about how best to actually deal with it. Even if they don't know CRPS, they know bodies, muscles and joints, and pain.

Make sure your pain is controlled, and give your GP some grief if you need stronger stuff to help you with physio.

Sorry if you already know lots of the above, can't help myself!! I know Lottie, and she has had CRPS for longer than me in her toe joint following surgery (as you'll know!). She's been a big help, and we jolly each other along and share the woes of it with a fellow sufferer....it all helps. ;) The knee is a big joint though, and things like the muscle weakening and tightening (joys of crips ::)) come into play a lot more with the knee I think. I'm finding it's becoming more noticeable now, although I have managed to finally get back my quad to some extent and my walking is a lot better now. You do have to work hard, there's no escaping it!

Anyhoo..... If there's anything I can help with then do ask or pm me. I'll be interested to hear how things go - everyone seems to get different treatments and pills and opinions, and you might be first with some wonder treatment that I can try.... ;D Getting on amitriptyline was my turning point with the pain, although I then had to move to Lyrica. The nerve treatment drugs (like those) were far more effective in sorting the deep pain than any painkiller.... I hope you can get what you need and have that knee moving a bit soon.

Take care and keep posting!! I'll drop into your post-op thread and read your story a bit. My post-op diary hasn't been updated for ages (bad girl), but all my early stuff is in there from op through pain and confusion to diagnosis and light at end of tunnel, so feel free to browse if you get really bored one day!!

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 #57 on: September 03, 2012, 03:11:54 PM »
15 years with RSD in my left knee...if you need to know any just ask away....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 #58 on: September 03, 2012, 04:34:26 PM »
Nettan.....you did ask..... ;D

What do you find aggravates the CRPS most and 'kicks it off'? I find too much walking will start it off, other times of course it just starts for no reason... Is there anything particular you avoid doing?

Have you found anything that really helps when the pain and burning are bad? What painkillers work best? Have you doing any natural remedies that help?

Gosh, I need to think about this some more... 8)

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 #59 on: September 03, 2012, 04:44:22 PM »
OH Kaddy.  :(  I am not pleased to see you here. Please don't take the wrong way! I was reading your post recent updates and had a horrible thought about whether you might have CRPS rearing its head. What treatment plan has your doc got? For me, getting into treatment early was the key but I guess having it in a big toe and tips of 3 other toes is a lot less invasive than the knee although I too went through the weight bearing, pain, etc etc....

Brams gives good advice and Nettan is a continual source of information on here for those with RSD/CRPS. There is also another KG member Silver14 who is currently battling RSD diagnosed a few weeks back and has had one block with good results initially but is awaiting further treatment. Make sure you get a proper plan of action in place - read up, ask questions. Treatments vary tremendously and you need a proactive team around you who will fight with you to get things controlled and your leg moving again. Movement is key for CRPS but with extreme stiffness and pain it can be very hard. Nettan is probably well placed to advise on options?

Avoid some of the horrific internet sites on CRPS. Some of the more well balanced ones will provide many useful tips and information snippets. One of my saviours has been Epsom salts - in a bath or in a damp sock. Super pain relief!! Cheap, non toxic and looks like cocaine along the floor of the bathroom in hotels.  :P

CRPS is vile but it feeds off despair. Like you, once I had a name for what was going on I was actually happier. I knew what I was up against then. You're a strong girl, I know that from reading your diary! Feel free to vent on here and to ask......as said it is not widely recognised and many docs seem ignorant of it or its effects. My GP who is great keeps calling it RSI. RSI in a fused big toe joint?! Wow, I'd be very unusual!

As said, I wish you weren't here if you know what I mean but welcome to the party anyway  8). Take care and keep us posted on the next steps (literally and metaphorically!)

Hugs xxx
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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