Situation IS getting better:)

[Rknees4]

Well Gang up with the torture twins again,
Just took round 2 of pain meds and feeding little Tika while my daughter sleeps the sleep of a Teenager.  Man I miss that..  Seems like about 25 years since I slept all night. Maybe that is because that is how long ago it was..
Did way to much work yesterday and that is why I am suffering.  Cleaned the patio which is quite large and put together my new BBQ I got for Mom's day and birthday.  Today it will be a tape and repaint the patio furniture so it goes better with the new BBq..
Take Care Gang.
Rk4

[Brambledog]

No. Is the answer to the question you may not ask.

 

Yesterday, as well as the flipping knees playing up, and burning toes again in the evening, my right shoulder has been incredibly stiff and painful, arm felt very heavy too, hand tingly. Kept it warm all day, gentle movements, still same by evening. Hand felt hot as well. Wore a nice warm top to bed to keep shoulder cosy....
This morning, it's exactly the same. Husband noticed, as he was helping me undress and get into the shower (nice, lucky man...), that my right hand is darker than my left. Still feels tingly too. Any ideas? Am seriously tempted to go to doc in local Minor Injuries Unit when J gets back, it's ridiculous.

So I'm home again. Can't even help with the painting either. Arse. I feel like an old old woman.....

Sorry for the moan guys.

Brams 

[Snowy]

Poor Brams. Yes, I would definitely go in and get it checked out. Much better safe than sorry, especially given how much you're already dealing with. I really hope things improve soon, for you and for Lottie. This CRPS really is an ugly beast.

[emergRN]

Brams...WTF is going on???  This sounds like a really bad flare!  I think you might want to get this looked at if it is spreading.  You know?  If you came into our ER and told us what you had, I can guarantee you that nobody would know what it was.  I never heard of CRPS until this site!  I hope it either settles down, or you can get some help with this.

I really feel bad for you and Lottie both.  There isn't a quick fix for what you gals have!

Feel better soon!!

W

[tez27]

Hey folks I am so sorry Brams and Lottie for both your pain at the moment, it sounds really nasty, I like W had never heard of crips until I started using this site so know very little about it, so sorry if I am asking daft questions but I am confused about how or why it affects other parts of the body and not just the operated bit, I'm sure I have read that it starts with some kind of surgery but assumed it was contained to that part and didn't realise it spread to other joints etc, is that what happens? or have I got it wrong again? Whatever I'm sending you both big (((hugs))) and hope it improves soon.

RK4 excellent news on the surgery date I really hope this surgery gives you some relief from the pain.
 
W also great news on the speedy MRI and how quickly it was sent to Vancouver I hope whatever it shows is something that's easy to fix and much as I know you would love another trip to Vancouver doesn't require another op.

Robin how goes the personal training stuff? I hope you have your study head on!!! I don't think I could go back to any kind of study now, its been too long and my brain aint holding onto the information quite as well as it used to, things tend to fall out of it very easily these days lol.

Snowy I saw the pic of your first grouse grind excursion of the year, as usual you look amazingly happy, and with your fantastic out door pool opening it looks like your summer is sorted.

Nick congrats on your FB group I hope it proves a success, I'm sure your experiences will help others in the same position. What about work? have you handed in your notice yet or are you still signed off on the sick? If I were you I would try to stay on the sick until you make a decision of exactly what you want to do, whatever you decide to do good luck with it.

As for me still no clue about when my surgery will take place, I have spent Wed, Thus, and Friday trying to get through to Mr B's secretary and the phone just rings out every time so I am trying to find her e.mail address and will try sending an e.mail to see if I have more success that way, I will also keep trying the phone and fingers crossed get in touch eventually,
apart from that not much to report, we are looking around for a good cruise for next year at the moments and spent a couple of hours in the travel agents today getting some prices etc, if it had been just D and I going I think we would have gone ahead and booked something today but we are going with friends so need to run things by them before we do anything which is probably a good thing, because when we got home and had a look online we were getting the same holiday a bit cheaper by booking direct, the other thing is trying to decide whether to fly somewhere hot then cruise or go from a British port  and put up with a couple of not so nice days to begin and end the cruise with, there are loads of cruises that actually leave from my home town which would be so handy but not sure if I want to start a cruise in Scotland with our unpredictable weather, plenty of time to decide I guess.

Right its 4am the dawn chorus has started had better get back to bed, got to clean my house tomorrow so need my sleep
take care Tez     

[Lottiefox]

Tez, i don't think your questions are silly at all; I suspect many many doctors have NO idea about CRPS or its treatment or its effect on people. Certainly pain management docs have a better appreciation of it but even they cannot predict what the prognosis may be, they can only say what evidence indicates in terms of best treatments, remission etc. At its crus CRPS occurs because the sympathetic nervous system over reacts to something. That something could be a trivial injury such as a sprain where the pain response is massively out of proportion and then associated symptoms set in too. Or it can occur as a direct nerve injury where the body again over reacts and the nerve patterns become confused. In my case there is clear evidence my dorsal nerve was pranged or cut on the big toe joint; this "talks" to the other toes according to my anatomy chart and hence why my toes are affected. I think I have been very lucky in it not spreading further but partly that is due to the very early start of Lyrica I got as I did have sensations that suggested it was spreading along that nerve up my shin. I am fearful what might be the state if I were to stop Lyrica or it ceased working (lets not let that worm out of the bag). In Brams' case it is slightly less clear cut although it would seem logical that nerves were damaged during the scope process and that set up the reaction. It is harder to isolate the crix because Brams doesn't have a great big scar where mine was chopped and associated numb patches but the pattern of where it started indicates the nerves across the knee joint took some form of damage. Of course many many people sustain nerve injury during surgery - MOST people don't react with CRPS!!!

In answer to does it spread - if you listen to pain docs this is HIGHLY unlikely. If you read internet forums it is more likely. I don't know what to think, but I know the condition can affect the whole of the system (I cannot tolerate very warm rooms now, I sweat profusely and feel faint.....my foot hates air conditioning if its in a supermarket in a sandal but I also cannot handle frozen food very well and my fingers get cold way more easily.......I seem to have bouts of tiredness but maybe thats just because I do a fair bit.....I seem to sweat more per se during exercise now.....nearly fainted after my Euflexxa injections.....etc etc). So, can it spread - quite possibly and I think that is the scary thing. Being on the right meds can hopefully reduce the risk of this but we always need to be aware that another surgery or even another injury could start the CRPS reaction in another part. I have been a little fearful of even things like the botox but its been fine, and I have sustained many bangs and cuts and twists at the gym without a reaction. But I would certainly be REALLY worried if I needed surgery somewhere now, and I think both Brams and I are pretty vigilant at monitoring changes. then of course you can get paranoid!!

Its a vile condition. Vile. Thankless. Cruel. Unpredictable. A mind-**** most of the time. But what do you do? You need to live. We are all battling complications and conditions in one shape or form. Before my fusion I couldn't walk very far. Now I have CRPS but I don't have the arthritic limitations. I walked Sue's pooch about 13 miles over the space of a weekend not long ago, on a beach. Couldn't have done that. I can jump (knees permitting), wear a bit of a heel (for a bit!) and strap a sandal over the top of my foot. Before, the spur was SO tender I couldn't even wear Merrells walking sandals. So, c'est la vie. I wish I didn't have it. But I do. As does Brams. And we have each other and everyone on here too!

Hope this makes some sense.....Brams, have I missed loads out?!

Hugs all, sun is coming out, going to take some work into garden......mate on way as we're doing a big presentation at a conference tomorrow (yikes) and need to practice, but its her birthday so we have mini scones, then out to Prezzo tonight for a sober stuffing!

Hugs! Hope the gang is OK....will reply to you all soon......

xxxx

[tez27]

Thanks Lottie that was so well explained.... even I understood it It does indeed sound a horrible condition< I really hope both you and brams feel better soon and these flair ups become less frequent until they disappear  completely........ I pray for a happy ending for everyone

[Brambledog]

Hey gangette,

Sorry for the negative whinge on the earlier post....lol, sometimes you have to let it all hang out....

The shoulder is much better now. It started feeling a bit easier about an hour after I took a Lyrica dose yesterday earlier afternoon. Not sure if that's significant (I really hope not!), and has gradually improved since. It's still a bit stiff, and hurts in certain positions, but light years better than before. Phew. It was a very odd thing though, I really can't pin down any movement or situation that could have caused it - I've had an ache in the back of my shoulder before after sleeping in a draft or whatever, but this was right through my shoulder and much more painful, not to mention the strange tingly bits down my arm, through my fingers, and the stiff darker hand.....eeek....

Anyway, enough of the shoulder. Thanks for the support though chaps, much appreciated as ever. 

Lottie - I think you got the CRPS facts down pretty well, I thought I'd leave it to you!

I'd just add that although it's rare for it to spread (as the fox said), if it happens there are two main types of spread. Mirror spread is where it starts up in the opposite joint to the affected area, and there is a random type of spread where it just follows the nerves along and migrates from one area to another... Horrid beastly thing. Also, it affects people in really varied ways. Some people have a minor injury, start CRPS and have it for a few weeks, then it just disappears. Others get it as a result of a more major injury, get it for a short time and it just goes. Some poor souls get it following some injury and it just goes one rampage through their body, and ends up affecting their whole body. Usually whole-body CRPS is a result of it not being identified and treated, and the patient favouring the affected area. A lot of the diagnosed people get it following an injury (usually a break) or operation, get treatment that controls it for hopefully a long time, 'manage' it (love that term... ), go through different treatment options as necessary, and fight it every step.

The important thing with CRPS that's known to help now is that the effected area must be kept working. The worst thing you can do is to rest the limb and pamper it. Even though it hurts, you have to get it moving regularly, which is why PT is so important. Hence Lottie and her gym fetish  and me and my rowing and gym. The longer we can keep our affected limbs moving normally(ish), the longer we hope to fend the thing off and sort of stop it gaining a real hold over us. I know what I mean. Lol.

The sympathetic nerves (for anyone who isn't sure, sorry if this is insultingly obvious ) are the ones that control your skin temperature and colour, sweating, hair growth, and pain sensations. So the symptoms aren't just the pain, the weird colours and temperatures - we also end up with fine, shiny, red (or purple, lol) skin (Lottie will know exactly what I mean...) with minimal or no hair growth, that sometimes sweats for no reason.....oh the joys .

That'll do from me. Take care all of you, and have a good evening. The weather has been surprisingly lovely today and I sat out in the swing seat in the garden for a bit with my book and a happy cat on my lap.

Had my first properly prepared tutorial session today on English Literature, went very well, got paid again (love that bit, lol). Then came home and cooked a big Shepherd's Pie with carrots and greens and homemade bramble jelly. Lovely cosy food. I am very full now.

Hugs to all,

Brams 

[emergRN]

I am so glad that there is some improvement Brams!  I was a little worried about you.  I was using my nursey brain, and started thinking about treatments for inflammatory response.  I started googling things like pulse therapy that they use for MS(high doses of IV steroids).  It was a good thought, but alas, it has been tried.  It showed some short term benefit, but it did not prove promising long term.  It only showed limited success in the early stages of CRPS, but did nothing for established CRPS.

I was a bit excited that I thought of something and there was actually an abstract on it!  Kinda cool, but alas...not a novel idea..lol!

I think that is so cool that you are tutoring in English Literature.  I wish you were around when I was in university, and we were reading Canterbury Tales.  It took me awhile to get into the old English.  Once I got used to the old English, I started to read it much faster.  It turned out to be my favorite of all time.  It is a great little story!  You could have helped so much in the early stages...but you were obviously too young at the time!!

&%$#$%^^  tonight!  Creature has been really behaving all weekend.  It was behaving so well, that I was starting to question if there was anything wrong with my knee, or was I just being crazy!  Well, creature decided to prove me wrong again.  I had another episode of locking, but this time it hurt.  I had to lift my leg up to keep it from bending any further, and now it feels like something is moving in there again!  It is clicking like crazy, and it has that irritated feeling.  It is also really warm!  Damn!

Oh well.  My old GP is going into the system tomorrow morning to see if he can get the report for me.  There is still nothing on our dictation system.  We checked again today.  The disc is in Vancouver, but we still need the report!  I am glad that there is a 4.5 hour time difference between here and there.  If I can get the report tomorrow morning, then I can fax it off myself.  It will be there before they open!  I hope!

I am really nervous that it is going to be a medial meniscus tear.  I keep thinking that I have managed to keep that intact all of these years with a chronic ACL tear.  It will be a horrible shame if it is torn!  Hello arthritis if it is .

Well, these are the mindless rantings of a nervous "W".  It was also one year ago this weekend that we started our epic hiking adventures last year.  This was a very hard weekend.  The weather was great, and I am really, really bored out of my freaking mind!!!

W

[emergRN]

Tez....Can't sleep again??

[tez27]

W sorry I must have just missed you last night, I had not long come in from a friends house and I dont like to go to bed as soon as I get home so a wee surf on the interweb usually helps to chill me out before I try to sleep, saying that I did toss and turn last night even took more pain killers about 6am this morning then didnt want to get up when the alarm went off lol
I hope you slept ok take care
Tez

[tez27]

Hey again folks, well at last I managed to speak to someone at the hospital, it appears Mr B's secretary has retired [why no one told me this when I phoned and asked to be put through to her I don't know] anyway I was put through to one of the other surgeons secretary who then put me through to another department that deals with wait times etc, and spoke to a really nice girl who looked me up and said that the reason I hadn't had any word yet was because they had sent my notes out to a couple of different hospitals but most surgeons don't want to touch a revision and because its their choice who they take from other hospitals they always opt for the easy straight forward folk which I am not it seems lol. the good news is that the theatres that were being worked on in my local hospital are now back working and she thinks the wait for Mr B wont be as long as first thought, so she is is going to get in touch with Mr B and see if he can give me an idea of how long until he can fit me in.
So even though I still dont know when at least someone is looking into it for me.
Tez x 

[seerobinbike]

Hey everyone.     I haven't written in a few days but I have been reading. 

Brams...Very strange about your shoulder.    Like you need anything else to worry about, huh?  I hope that it is continuing to improve today.  Are you going to follow up with a doc?  I really hope that you do.  As others have said, don't worry about what you call whining; I think you are more than entitled.  Good going with the tutoring Brams!  I hope doing this helps give you some respite from it all.  Yummy on the shephards pie.  I love, love, love it. 

Lottie...Hope Reggie is feeling better today.  You did quite a nice job explaining the whole CRPS thing, strange thing it is.  I don't understand why it doesn't get more funding for research.  Although I'd never heard of it as well, it certainly isn't an extremely rare condition.  (I've been reading more about it since you and Brams have been talking about it.) Hope that you are enjoying the new job, your time in the garden and anything else that keeps your mind busy and happy.   

W...Oh, poor W.!  I'd be on the edge of my seat as well and awaiting the report.  I'm anxious to hear what the MRI found as well!!  These freaking knees, huh?!  I'll check back in later and see if you've heard anything. 

Rk...Hopefully, your sleepless nights will come to an abrupt end soon.  Tic Toc.  You shall be in surgery before you know it and getting the whole mess fixed!  Try to stay positive even though I know it's hard at this point.  Oh, little Tika.  I love that name.  I feel like I want to get another cat just so I can name her Tika!   

Tez...Does Amsterdam seem like a million light years ago now?  Hope that your knee is readjusting to Scotland.  What a pain in the arse to have to make all those calls and not be able to get through.  Still, it's time well spent if you can give those folks a giant nudge and get a earlier date for your surgery. 

Snowy...Oh. Man.  I love little Sage.  What a sweet kitty!  Thanks for all the postings; they make me happy.  Hope you and J. are doing o.k. and hanging in there. 

Nick...Good job on the new FB site.  Hope it's rolling along just fine. 

I'm doing pretty well.  Knee has been a bit funky for the past few days and I'm not sure why.  It's a bit swollen and stiff so I guess I'm going to have to do the rest/ice thing for the day and maybe pop a few Advils.  I hope it's a temporary glitch!  It was doing amazingly well and the other day I noticed that climbing the steps was irritating it.  I'll give it a few days and hope that it gets better before I call the doctor.  I can't even believe how much time it's taking me to get through the first chapter of the ACE personal training course.  Apparently, I didn't retain very much of the information I learned in massage school.  Hopefully, I will pick up some speed as I get to the more interesting parts of the book.  I'm kind of happy for the rain here; maybe I can just breeze through the next few chapters before the sun makes an appearance! 


Hugs, Robin xx

[emergRN]

I have to speak to the Sage situation!  Snowy, all of those pictures gave me the warm and fuzzies yesterday!  I think everything happens for a reason.  It if very odd that Sage was Freya's favorite, and now he is back.  I think he is supposed to be with you and J.  I can't get over how attached and loving both Smokey and Freya are towards that little guy!  I think he is home!  It certainly looks like it!!

Still waiting...lol!

W

[emergRN]

No report yet......UGH!!