Anyone with CRPS/RSD in their knee??!

[Lottiefox]

Sending many hugs to Brams and to Nettan - you are both having a really rough week. I hope things improve and Nettan good luck with the impending surgery. I know we'll be in touch via Fb. Am also following Malin's brave fight - what a girl.    Brams I cannot offer any wisdom on the arm and hand symptoms apart from to say hopefully they will pass and will be a blip - CRPS seems to have zero logic.

JTB - I operate in continual denial! Seems to work OK but I have been so lucky in my symptom control. Luck of the draw I think and denial stops me thinking "what if" most of the time. Functional?! Maybe not - but! Keep up the fight to win back your old knee - hang in there!

Hugs to everyone having a rubbish week.

xxx

PS Kaddy hope your recovery is going OK too, will check out your thread xx

[Brambledog]

Am probably in some classic stage of denial about what ails me. If I don't heal (and I don't seem to be) this stage will pass, right? Sadly, my hope is that if I don't and it does, that something more fruitful than this slow motion fight for my knees will occur. I get so tired of this struggle to win back my old life and am terrified that I won't, but at the same time have some awareness that if I did wake-up "cured," I might be at a loss as to what to do with myself. That would be a nice "problem"

There's so much truth there JTB.... I know exactly what you mean. As times goes on I think you can and do settle into a state of some kind of acceptance, and move on with your life, but I don't know that you ever stop grieving for what you had and what you feel has been taken from you. I've sometimes said that I'd just like a weekend off this, just to get a few things done and experience some stuff I hadn't yet done - but then I imagine the hell of this being switched back on again afterwards. Eek!

Don't be embarrassed about the number of I's JTB. The way I see it, this site is here for all that stuff you can't ask/say/moan about when you're at home - from medical stuff, to saying how much it hurts today when you're family have heard it too often and can't respond like they did at the start... I've used it about ten times in my paragraph above! But if I start counting them, that's crazy, and if I halter my use of them, then that's just something else to worry about. Life's too short.  

Thanks JTB, you're very kind and posts like yours mean the world. It made me smile.

Keep in touch, and I hope you manage to have a good day today.

Brams  

[Kaddydee]

Hi guys,

I don't know what to say but I'm thinking of you all.  So sorry to hear of the pain and continuous problems you are having.  I can't even think of a funny story or joke to brighten up your day!  That's probably good news for you because I'm a hopeless joke teller.

When I was in hospital the guy opposite me was a real inspiration, like you guys are.  Strong and encouraging to others even though life it tough.  This guy was early 30s and he'd grown up with bad diabetes.  He had had a double transplant and was hospital this time with one leg and several toes amputated and a skin graft that refuses to work.  This guy was the life of the room- happy, talkative and he had an amazing relationship with his wife.  I was blown away his attitude and it kept me going when i was frustrated and in pain.  You guys do the same.  I know you are struggling but by telling your story and the highs and lows that go with it you help a lot of people - so thanks!

Hope you have some little 'ups' in your day today!

Kaddydee

[Nettan]

Oh now let's see if my head is awake with all I want to write to you all and all I want to say.
Funny is when I write I have to more or less look with one eye or look from one side. The morphine makes it hard to see straight in middle and concentrate. Feels like my nose is sooooooo big and in middle of the way for my eyesight. Nothing new this, usually happens at higher levels of morphine.

Brams, I hope the change of meds will be it for you and that you continue to feel less of that nasty feeling you had.
Must have been horrible.

No I will not have any epidural before just during the surgery, but I will go in the evening before and will be hooked up already then and then keep it for some days. I will also be able see Malin as we are really close in the hospital to each other then.
Great doc I have that have spoken to her doc and is trying to make it better for both of us! Yes miracles do happen.
Malin will be going to this hospital on Friday.

JTB, I have a structure that I follow. I live with what I have for the day and do what I can with it just this day that I live for the moment.
Then I take this day and turn into goals that I try to do and achieve the same week. Not really longer plans than that. That works pretty well.
It's all about to get a structure that is working and a balance that is possible for the time being. Of course all things I don't achieve but they are in my mind and I plan to try. I hope you understand what I mean.
Something that was hard for me was when I wasn't sure if I would be in wheelchair for lifetime or not. I thought every one else that had wheelchair could look so good and cool in theirs. It wasn't that I wasn't ok with the wheelchair, I just wasn't sure if my workd was with others with disabilities only or with the world I was more used to, without disabilities. Now I know I don't need to pick, that I can have both!! Weird thoughts I know cause there are no difference really. We are all equal, just live in different ways. And everyone of us is unique no matter how we are or who we are.
Let time tell and don't be in a hurry about what life will give and have in mind for you.

Lottie, I try to update on FB more close. I hope you understood the last I wrote. It's very tricky, but it is a must with this change.

Kaddydee, the story you wrote is to hear about Malin (MDJ)!! Yes, you are so right, sharing and having an open mind helps a lot.
What we can't help ourselves with, if we can do something for others that is helpful for oneself also.

Yes, am having surgery the 10th. But actually I look forward to it. Now my right knee get stucked now and then and left leg with my break has also to suffer more. I know I will be fine, but it will take time. Now with me moving and coming close to Malin ( she had her things moved to the new apartment today) will make it easier for us to help each other. I will have help when I get home after surgery and so will she.

Have had a rough evening and it's now 3AM, but I know I can sleep tomorrow morning and so I will.

You all take care of you....Nettan

[Brambledog]

Oh Nettan, you made me chuckle at your nose sensations on the morphine! Funny but not if you know what I mean....

The shock sensations have subsided a lot thanks. Phew. But they seem to have left behind that over-sensitive feeling in my left arm, I didn't have that before, but am hoping it is just a temporary thing and subsides quickly... Still no news from the doc about the med change, they do take their time  I'm getting less and less happy taking the Lyrica though, after I've taken them I feel like they won't go down properly! Feels like they get stuck half way down and I have to drink a lot of water, then with my late ones before bed, I find when I'm lying in bed my stomach suddenly does this pop thing and some air comes out of my throat - cant describe it any better, it's not a burp, just an air thing. Really weird, never had it before the last couple of weeks. You ever had that Lottie?

Am so glad you will be able to see and talk to Malin when you're in for your surgery, that'll maybe help both of you with recovery. I'm glad she is being moved closer at last, you must feel so relieved. As you say, miracle doc. Hope the ones at the new hospital are as good!

Yes yes on the wheelchair thing. I haven't used mine for a week or so at the moment, and I know when I next do I'll get that little frisson of weirdness as I get in, then within a minute I'll feel great. Very odd. I saw a young woman in hers the other day going to see the floods we had in town, she looked so natural in hers and was coping just fine on her own, obviously had a lot of practice! I wondered whether she could walk on her own or just had a lot of difficulty doing so...funniy the things that go through your head. Like you it made me think that we just do what we have to, everyone is different, levels of disability are different, and a wheelchair is just a tool.

Not long to go until the 10th now, we'll all be rooting for you 

Take care in the meantime,

Brams 

[Nettan]

Hope everyone is doing okey out there in the cold icecold weather.
Snowing gently here off and on, but so very cold. Honestly I can't be out.
I get bonepain in both my legs, the pain you have in the skeleton. I remember had bad such after microfracture in my right knee in 2007.
Not even being in one spot though I have doubled my morphine, doesn't almost touch the pain.
I have had some burning on the lateral side of my right knee more almost to the back below my knee. I hope is not rsd/crps, more then pain from the cartilage damages. Oh well cross fingers and toes. I feel like the most whiney in this world.

I spoke with Malin like an hour ago, we whined and the cried and then laughed together. Then you feel really that you are the best of friends !!!
I have my son and his friend going there tomorrow with all her stuff. My home is filled now with music equipment, both hers and my sons, as he is a DJ.


Brams, how are you doing today ?? I know this with meds when they get stucked. But stupid me is always swallowing without liquids nowadays.
I have been on meds for so many years and gotten used to it. So hard sometimes when out and find something to drink while you need it.

All best, over and out from la Swede!

[Brambledog]

Bonjour la Swede!

Oh hell yes I know (to some extent anyway) that bonepain thing, hurts way deep inside, horrible thing. I had it last winter a little bit, thought it was bad then, but this years it's lots worse and I can't bear to be outside even in our paltry cold so far! Within about five minutes my skin is screaming at me and my bones are ice in my leg. Mind you I can get the ice-bone thing anyway, even without the help of the British weather 

Sorry your pain has been so bad. I count myself very fortunate not to have got near the morphine stage yet, and it's something that does scare me. When i had those horrible shock pains early in the week I took some tramadol and it did diddly-squat, didn't even make me feel woozy. Makes you think. Hopefully that right knee pain of yours will ease off and give you a tiny bit of peace. Bloody other body parts trying to get in on the act! How selfish! 

Glad you got to speak to Malin and had a good confab together, must have made you both feel a bit better and made you feel less alone with everything you're dealing with at the moment. How are you holding up? Not long to go now, I will keep up my thoughts for a good outcome for you both, no less than you deserve 

I'm eating a few bites of something after the tabs now, seems to help although I do feel pathetic about it when you see these folk just eating the damn things without so much as a sip of water to help them down  My right knee joined my left in a battle of 'who can be hottest and sorest' last night. When that happens I find it hard not to worry about the CRPS spreading there as well. It's wandered from my left knee down to my foot, and across to my right big toe.... It's only happened half a dozen times altogether though in the last few months, so I'm valiantly trying to ignore its shouts! My left is very fat this week, and gave wagon me this morning, which really shook me up. Hate it. There, that's my moan for the day...I think!

Take care of yourself Nettan, you and Malin are lucky to have each other for that support and closeness only the best of friends can give. I have some good friends, but my best friend lives a long way away and has done for years now. When we get to meet up we just fall straight back into conversations, and it's the same as ever, but our lives are very different and I miss her like mad. Hey ho. Can't have everything, lol.

Hope you get a decent sleep tonight and that the pain beast sleeps too...

Brams 

[Nettan]

03.40 AM in the morning and guess what I'm wide awake. My pain levels are no this world.
Been on the phone right now with our friend, she was also wide awake.
I called and could take some more, but need to stay awake a bit cause of that.
Breathing can be effected. Am angry and sad!

[Brambledog]

Oh Nettan  I'm sorry you're having such a rough night. Hope you are asleep by now or feeling a bit better at least... Bit of a rough night myself with a return of the shock tactics, but only for a bit, rest of the wakefulness due to our old friend pain......sigh....? (((hug)))

Take care of yourself today and will be thinking of you and your friend there also having a tough time 

May today be kinder to us all.

Brams 

[Nettan]

I hope for a good day for everyone. I got an hour of sleep, so will be napping and be today.

Tomorrow I will go to our friend, she's having a rough day today, but so far all goes well. The epidural is lowered slowly.

Brams, hope your day is a good one. Talk more later!
/Nettan

[Brambledog]

I hear you on the sleep Nettan. Wretched night here too, although I did get a few hours so won't be as zombied as you! Hope you feel ok. Will be thinking of your friend as that epidural is lowered...fingers crossed...

Well the day started well and went downhill!! It's 2pm now and I want to curl up on the sofa for the rest of the day! Shattered....

Not best start actully, husband had booked day off for us to go Christmas shopping, but youngest daughter is off school ill this morning with a sore throat and bit of a temperature. Nice. So we had to take the poor morsel with us... Drama getting out of house for hospital appointment due to stupid kitten escaping out of front door (not allowed) and then escaping up tree for fifteen minutes. Finally coaxed her down with some of last night's stew after standing around in the cold. Leg NOT happy one bit. Rang doc to let her know I'd be late, got there when I'd said, then still waited another 30 mins anyway  Doc gave me titration plan, very complicated lark, need a chemist with a PhD to live with me for the next two weeks and make sure I get it right, lol. She is 'concerned we are not heading in the right direction with this' (love doctor talk) and is referring me to Bath for a 3-week stay  with weekends off for good behaviour. Eek. She warned me it's a long process, and they have to apply to the trust for funding, so have no guarantee will get it - there's always some poor bugger worse off... Also, she was not surprised the tramadol wasnt doing much, and was terribly sorry but she couldn't give me anything stronger for pain relief at the moment until I've got onto the Gabapentin. Nooo. That has done nowt for my mood.

Then to cap it off, I had to go to the hospital pharmacy to get the prescription - she said the queue wasn't too bad today (famous last words) - got there eventually (receptionist - "ooh it's not far love, just down there, turn right and it's on the left...) after a VERY long painful limp (took crutches didn't I....bloody idiot. Should've taken chair but wanted to look like I was making an effort. Wally). Half an hour wait. AND the pharmacy women were soooooooooooooooooo helpful and kind. Not. Too busy yakking behind the screens to get much done. Grrr.

Finally arrived back two hours later than planned, knackered, hungry and frankly a bit tearful and boohoo. And feeling very guilty for dragging sick child and day-off husband through all that! So I am in no mood for Christmas shopping this afternoon!!! My daring long-suffering husband has just got back with some lunch, bless him (no coeliac rolls left of course, sod's law working overtime today) and I'm hoping once I've eaten I'll feel a bit more like it. Going to be a long afternoon though I fancy....

There you go. Thanks for listening  I feel cleansed of the whole grisly experience, lol.

Hope you are having better days!

Brams 

[Brambledog]

Hi CRPS folk,

Got out of the shower this morning and really noticed how shiny, dry and thin the skin around my knee is. Anyone have this? I'm not sure how much is due to this new fun big swelling I've had for the last three weeks, as I know it was a bit shiny before. But this was freaky!

I've got some monoi oil I thought I might try on it, anyone used anything particular?

Hurt my knee while physio trying to get me walking better three weeks ago, knee really flared up with big swelling, and it still hasn't gone down. I'm elevating and massaging the swelling away whenever I can, and still exercising gently and walking a bit, but am having to use crutches all the time again as my knee is so unstable and feels like someone slipped a big wet sponge inside my knee - I don't know quite what might happen every time I put it to the floor and put my weight on it. I know it's a flare, but I was told it would settle in about a week. Bit scary now tbh!

How are you all doing? Hope the pain levels are low and you are getting some fun in.

Brams