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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 29181 times)

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Offline milligan1967

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #30 on: July 13, 2012, 07:33:09 PM »
I have RSD in my R knee following multiple surgeries over a six month period.  These surgeries came after injections and draing of the knee and draining twice after surgery and one more shot.  Pain management doctor said it was caused by the surgeries being to close together.  Seeing new ortho doctor, who ordered bone scan, which shows the zimmer implant device might be coming loose.  Have to have sympathetic nerve block once a week for five weeks to see if it is going to help the RSD.  Tired of sitting in recliner and wearing TED hose on that leg..  Dread the possibility of another surgery, would love to go back to work.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #31 on: July 13, 2012, 08:27:43 PM »
Sorry you're having such s tough time Milligan... :-\

Hope the sympathetic blocks help with the pain. Sorry to be dense but what is a TED hose? What does it do? And more importantly, does it help the CRPS?! I don't know what a zimmer implant is either! Sorry... ::)

Surgery is definitely a scary prospect with this thing. I know that when my time comes I'll just be remembering the awful pain and sickness after last time... The pain people say there are things they can do before and after though, now they know it's in there. Will be crossing everything, that's for sure!

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 fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #32 on: July 13, 2012, 11:54:38 PM »
Hello all. I have good news as far as the worker's comp doc agrees that CRPS is the likely diagnosis for my knee and has recommended that I get the bone scan and the referral to the pain clinic. It's a relief to know that they are going to take care of it so far at least.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #33 on: July 14, 2012, 03:12:17 PM »
Well, I'm so sorry the CRPS diagnosis is pretty much confirmed....not the news we were hoping for you, but hey, you belong to a select band of Special Ones now. Welcome, fellow traveller. Lol.  8)

But.... As far as the WC goes - Hurrah!!!!  ;D
Thank goodness for that, let's hope the bone scan and pain doc appointments come quickly...

I've been thinking about your comment about the CRPS affecting a bruise, and I think you're right on the money there. I was sat a couple of days ago with a tray edge digging into my lower legs for about half an hour. It wasn't painful or anything, but afterwards on both legs I had that indentation and redness you get. It disappeared from my R (normalish) leg within a few minutes, but it took nearly two hours to even out the skin on my L leg. I got quite alarmed as this dent just stayed there looking just plain wrong.... :o The blood flow being diminished would logically affect things like indentations and bruising, because with both, it's the blood flow to the tissues that resolves the damage.

Now the doc does think it's the crips, definitely stay away from ice, electrical impulse stuff and stress!! Stroking, touching, rubbing etc is all good though...looks weird but the crips likes it.

Take care of yourself, a bit of pampering and relaxation is definitely a Good Thing with this :)

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 #34 on: July 14, 2012, 04:10:47 PM »
The bruise from the injection on my knee is still dark blue and it was given to me 4 weeks ago. When I saw my ortho about a week and a half ago he said it can be normal in some people and that he probably nicked a blood vessel (that's how you get a bruise anyway I thought). However, my PT's think it is very strange that the bruise is still as dark as it started out and it is not dissipating or turning green, yellow, etc. like you would expect a healing bruise.

I only have one more PT session before worker's comp has to approve more, but I'm sure they will with the opinions of their doc being what they are.

I don't really know the rules about posting links here, but there is another forum I visit called "healthboards" and there are pages and pages (upon pages and pages) of peoples' experiences with CRPS/RSD and I've really gleaned some good (and not so good) info over there. Mostly good though and alot of good support so if any of you get a chance to check it out, you just register as you do here and search under Reflex Sympathetic Dystrophy.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #35 on: July 14, 2012, 07:03:19 PM »
Yes, I know about the RSD/CRPS boards and have read bits and pieces.....

The issue I have with them is that they seem to fall into one of two grooves, the ones where people have had their lives destroyed by this, spend their whole lives in terrible pain, and tell really REALLY awful tales of dreadful things that make you afraid to be alive with it in your body.... And the others where it is predominantly over-cheery people saying things like 'omg, my leg fell off today and I was in so much pain I nearly strangled my dog I was hugging her so hard, but I laughed it off because you have to don't you, lol, and went and ran a half-marathon and cleaned out dog kennels for a charity all evening, and now me and all my doctors are enjoying champagne and canapés on a yacht overlooking Sydney harbour while I have a spinal cord stimulator fitted.....' I may well have misunderstood some stuff...no offence to anyone intended.

You can, as you say, pick up some interesting and useful info, but there's just too much scary stuff for my liking, and I'm not ready to spend my days panicking about every little thing and picturing the worst just yet.... And I know that if I read too much of that stuff, that I'll get sucked into the spiral of obsessing about it!! Don't get me wrong, I do worry, and I do have problems with this horrid thing, but so far I'm in fight mode, and trying not to let it affect me too much. Maybe it will get that bad, maybe it won't. Maybe I'll get run over by a bus next week. Who knows? The docs certainly don't seem to.... ::)

Obviously, I am devoting a certain amount of my time writing on KGs about it!!!! ;D But not too much I hope....

I don't know the answers, and I'd love some useful advice and tips on things that help. Equally if I have anything to say that helps anyone else I'd be stoked.....dream on Brams!

Hope you're all having a good morning, afternoon or, as we are here in the uk lol, evening!

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 #36 on: July 14, 2012, 08:09:23 PM »
I definitely agree with you about most of the forum boards. I do like "healthboards" which is the specific name of the board and website actually. Not sure if you've been to that one. I know what you mean about everything you say though. BUT I really can see the value in that forum (and from what I can see really only that one because the other ones do seem to be more the way you say). There are ALOT of people in there with very advanced cases. I pray I NEVER have it to that extent, but consistently I hear get diagnosed early, get treated early, and hear the meds and treatments that are current, not only here in the US but all over the world. I take what I feel I need to know and then I know if my docs are treating me with current and common treatments, etc. Also I realize that for alot of those people on there, there is no one else in the world that understands what they are going through and that they can be truthful with about how they feel.

And I'm not trying to diminish in any way the help I've gotten here. I haven't even been "officially" diagnosed yet. What I get between the two boards are that if I don't want this thing to take over my life I need to make my doctors listen, get diagnosed and treated early, work through the pain (gently though) and most valuable I think is that if I give up and don't move it no matter how much it hurts, I will lose mobility and that's the worst thing that can happen. I hate that I only have 1 more PT session until the next series gets approved.


Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #37 on: July 14, 2012, 09:16:44 PM »
You're right there.

There's a lot of valuable stuff around, and you do have to 'filter feed' your way through everything to find it. I agree that it's sooooo important to look around for what treatments help to fend CRPS off - as you say, early treatment is important, and the idea is that if you get on top of it early on then you will hopefully NEVER develop into one of those awful, tragic, extreme cases....

As you say, you haven't been officially diagnosed yet, and there's a chance that your doc is wrong and that it's not CRPS, but if it IS then you have a really good attitude I think, and every chance of keeping yourself healthy. The tricky think about CRPS is that there is no consensus on treatment, so it really is very much up to us to research our options and push to get the treatment we think will benefit us. I'm finding that part of it very difficult, having always relied on doctors to tell me what treatments THEY decide will be used.

I agree completely on the physio thing. Mine was stopped a few weeks ago after months of PT, and I think I was lucky to have it for so long, but it's definitely harder to motivate yourself without that regular checkup with your physio!!!

Take care Fluttersby, have a great weekend.

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 #38 on: July 14, 2012, 09:43:22 PM »
One of the MOST useful things I discovered when I was diagnosed was some random person's blog about how he'd "beaten" his RSD in his hand. He mentioned Epsom Salt wraps, DMSO and exercise.

Being me, I immediately ordered Epsoms, DMSO and went hiking.  ::)  I still use the Epsoms today - after a flare it is the SINGLE best thing at taking away the pain, swelling and redness. I am "lucky" I guess that my RSD is SO localised, you can draw it onto my toe, joint and tips of other toes. Easy to stick them into a sock filled with the salts. I bought the DMSO - google it.......it is not licensed for use in humans but they use it a lot with horses for inflammation. Well, I stuck it onto my bad bits, 3 times a day for a week. It made my skin wrinkle a bit, it sure didn't smell that great...but to be honest i think it helped! I haven't used it now for a year or so but I still keep it in my drawer - bought some weaker 60% with wintergreen so it is kinder to the skin....never ever use anything stromger than 70% on yourself!

I also follow a blog about someone who has overcome terrible RSD first using meds and now following a high raw vegan diet. I haven't yet managed to drag myself to that level but one day.....I guess I should try it...I am convinced we CAN get our bodies to start to behave and revert.....it is very hard to find a way to do that though.

Moving is a huge thing. PT is important but to be honest, following a schedule of basic exercises and just bending the joint, trying to use it as it should be...my top joint of my big toe was solid when I was diagnosed. The other one where it joins the foot is fused, so it was meant to be! My doc MADE me gain control over the top joint. That bit was bright red, sore, tender, yet numb. With loads of effort and constant flicking of it, trying to fire it...it now works like a dream. I can claw it into the carpet! I am always moving it, along with my other toes, ankle and knee on that leg. Do as much as you can with bits around the RSD affected area, it seems to help.

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 #39 on: July 14, 2012, 10:22:52 PM »
Ahhhhhh the Epsoms, Lottie....... 8) :)

I love the Epsoms. They are like magic on my knee when it is red and raw and flaming....

You do what you can, and you do what you have to - and you keep on and on doing them. Ad infinitum. ;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 #40 on: July 15, 2012, 09:33:41 PM »
I have tried sitting in a tub with epsom salts. I think I need to do it more. This all started in/around my knee but now I have a slow burn from the top of  my thigh to right above my ankle. Having anything on those areas for very long hurts like crazy. So, for me, it has spread from the site of original pain. I told my PT I was going to start wearing skirts and dresses but I live in the snowy white north, so there needs to be a much better option. The fan blowing on my leg hurts but if I cover it that hurts. It's hot so I have no option but the fan/and/or AC blowing.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #41 on: July 15, 2012, 10:11:58 PM »
Ouch...

I can never remember the technical term for that over-sensitivity thing - I hate that, the leg of my joggers is rolled up at the moment as I'm typing because I can't bear anything on it! I do touch and stroke it etc like you have to, but I can't do that ALL the time!! :o It's not red though, so I'll hang fire on the epsoms for now.

Mine has spread from my knee to two-thirds up my thigh at times, with one Great Red Spot in mid-thigh, but luckily it's not all the time. It has spread to my left foot though, and at the moment my toes are fat, red and hurt like hell. They're loads bigger than my other toes and feel like some demon is sticking pins all over my toes and ball of my foot. :-\ Time to get the old sock of epsoms out I fancy.... ::)

I had horrible jaw and toothache this morning, but it seems to have passed for now. Im in fear of having to have something dental done, I hate dentists at the best of times anyway! I've got an appointment tomorrow for a check in case there is something amiss, so will have all fingers crossed. I've got to take him an info sheet on CRPS so that if he does have to plan for anything he can be prepared. I read about crips and dentistry this morning and apparently they need to use a different numbing injection to normal, and use more of it, etc. Great.

Hope your leg has calmed a bit by now. It might not be the crips spreading, sometimes you can get a thing called the RSD rash, it doesn't mean your crips has spread, just that it has set off a different area for a bit of a lark ::) I'll hope it's not that anyway!

I find fans painful if my knee is sensitive. I prefer to rinse a cold flannel, wring it put andut that on quite firmly. I find that firm touch is lesser full than light stuff like fans or clothes. Tricky if the whole house is roasting though... :P Sometimes you just can't win.

Keep smiling when you can, and have the odd nip of something nice. Ha a small tot of whisky earlier, it was lovely!

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 #42 on: July 18, 2012, 04:37:20 PM »
Well, it seems my worker's comp company wants to play with me again, so this is going to be another fun few days or weeks.

My sister was in town from Texas over the weekend and I think I overdid it a little spending time with her and her family. My last PT session was yesterday until my doc (who is out of town until next week) approves the next plan of treatment (and the WC has to approve). I'm concerned since yesterday evening that my foot on the same leg started aching and feeling that weird sensitivity. I have already pretty much decided to wear dresses and skirts as much as possible to keep everything off of my leg, especially to keep the pain down in public so I can function as much as possible when I have to. Not sure what I will do if it starts affecting my foot like that. This is truly scary stuff and I haven't been "officially" diagnosed by the pain management doc yet.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #43 on: July 18, 2012, 07:35:32 PM »
Eek. You definitely need to be checked properly and diagnosed or not - and they need to stop mucking about and do it ASAP. This stuff is indeed scary, and needs treatment started promptly. A nerve treating kind of drug like Lyrica (pregabalin) or amitriptyline or Gabapentin might help - it worked well for me to start with. I hope you can get seen soon, this WC lark seems like a complete pain in the arse.

Just try not to panic and think the worst. I hate people saying it but it's true - anxiety makes CRPS worse.... ::) Oh how ironically marvellously cruel! It's also very important to keep the limb moving, weight-bearing etc, so don't stay still for too long, do as much as you can bear. Also keep rubbing and touching it, treating it to different sensations - the worst thing you can do is to sit still for hours with it held immobile and untouched - the crips really kicks off then - I find mine is always worse at night when I sit down and try to relax and watch a bit of tv, etc.

My jaw/tooth pain thing was checked over and it was just me clenching and setting the nerves off, thank goodness. More relaxation, more meditating, more calming things....and less pain would help as well....oh well, I'll try!

I've had a busy day, sat down after tea, put the tv on....so my knee is cold and icy, and my left foot toes are on frigging FIRE. Fat and red and painful. Ouch. My R toes are also hot and hurty, but not as bad. They'd better not have any ideas....

Take care of yourself, and keep on at whoever you can to get you seen quicker.

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 #44 on: July 20, 2012, 05:33:14 PM »
Thank you. All of your advice is exactly what I have heard and read everywhere else. Yes, when I get stressed or panicked, the pain is AWFUL. I told a friend last night that I felt like my leg was  having a baby (in labor). Isn't that crazy. She did look at me like I was crazy, but that's how it feels at times and I have to slow down and breathe at those times or I can't carry on a conversation. I don't even want to get out because I don't want to get like that out in public. Wow!! I sound like a baby, but this is how I feel.

It's a nice cool day out today though so I think I WILL try to get out and walk a little since I'm not in PT anymore at the moment. Thanks for listening to my venting. I don't usually do that too much.