L arthroscopy, bad PFOA, now CRPS. PFOA R leg. No ops/injections due to CRPS.

[Brambledog]

Hi Lottie and Nick!

Thanks for all the great support, more effective than painkillers any day...

Nick - you are right with your NHS quote, basically the figures on CRPS are a bit of an unknown, and I know Lottie and I have both been told different things by different doctors - some say it's very rare, others that they see a fair amount of it. Taking an average of those, even 1 in 10000 is still danged unlucky! Still, once you've got it, there's no point in wishing it away. It's just a case of taking another deep breath and getting on with life. There's still a lot worse out there that I'm lucky not to have... I know you've had your own problems recently, and I really appreciate you taking the time to wish me well. Hope all is well with you now. x

Lottie - I knew you'd find this and get on my case  . Lol.... Hearing you totally on the surgery angle - there's no way I'm letting him cut into my right knee until this current CRPS session has eased off. It would be insane. It's clearly NOT under control at the moment, so he can go swing for now. As and when it is slumbering, I might let him, depending why he wants to, what he wants to do, and whether it will actually benefit me... No danger of me letting that knee sit quietly, I persevere with the exercise bike, the walking, and the new PT exercises. Me no stupido! Lol.

Thanks again everyone. You're simply the best. Better than all the rest. Better than anyone. Anyone I've ever met. 

In a silly mood now....well that's an improvement!

Brams 

[seerobinbike]

Brams...I finished my post last night and forgot to say that I'm so happy your poor knee is responding to the increase in pain meds!  Excellent news.  Did hubby get to those parallel bars and steps yet?! 

Robin

[Brambledog]

Thanks Robin!

Not yet.,,, I've been searching the house for something just the right height, but no dice yet.

It can be his weekend project! 

Brams 

[Brambledog]

CRPS rampant last night, still a bit ropey this morning, so just had a long chat with physio, she was great. Basically I need to get the CRPS under control before they can do anything much. She said even a big book like the Yellow Pages was better than nowt with the backwards step exercise, and if nothing else even stepping back would at least do something with the VMO! Seeing her again next week. Fingers crossed.

Saw my surgeon. Sadly, the CRPS has been bad recently and it was very swollen and colourful while I was there. He seemed almost alarmed at it (great for my mental stability, thanks!) so although he thinks a PFJR is the way to go when surgery becomes unavoidable, he won't touch it with the proverbial barge pole until the CRPS is under control. Not even a jab. 
I have an appointment to see my GP on Monday. The amitriptyline obviously can't cut it now, so I will push for a change of drug, and going by previous conversations that will be Gabapentin. Surgeon thought it might have a better chance too. Hey ho.
So I have to wait another 3 months to see him, and hope that by then the CRPS is sleeping, and he can then do an injection or something to buy me some time.

I just want my life back!! They don't get that side of it at all. He doesn't want me to have a brace because it will hinder the strengthening of my quads - I didn't want it for all the time, just so I could drive again and maybe do a bit of work again  I am not good at boredom.

Alternative life plan needed now I think...and ways around the knee. Problem is, without driving, I don't have independence even if I could get an office based job. I just want to work again! Husband is going to look at cost of getting an automatic, but we can't afford jack sh*** at the moment.......because I'm not working!!! 

Grrrrrr. Much wailing and gnashing from Brambledog.

Thank goodness I'm such a naturally sunny person 

Brams 

[Brambledog]

Just a quick update on the Brambledog's Life....

I saw my new GP yesterday, who thankfully was a no-messing-about let's-be-'aving-you kind of doctor. I am now on Lyrica thank heavens, not the Gabapentin. She handed the Lyrica prescription over without any fuss. I have everything crossed now that it works...

The ami has definitely not been cutting the mustard recently. I've had flare-ups nearly every day, three times my right knee has joined in, my hands twice, and I had some whole-body shock type things in bed recently that freaked me out in no small measure. Doc thinks I have nerves misfiring all over the shop and it needs controlling fast. Phew. That's what I was hoping for.

Sadly, it's never as quick as you want. I have to scale down the ani first before starting the Lyrica, so I had a half-dose of ami last night and take a small one tonight, then tomorrow none, and on Thursday I start the Lyrica in the morning. She said it wasn't going to be a fun week... Today I'm already noticing just how much that ami WAS doing - both my knees are more painful, although Len is knocking Rhod into the proverbial cocked hat and wins by a country mile! I feel more awake though, which is good, although I know it won't last long as the Lyrica zonks the brain too 

So that's it for now, folks. Thrilling stuff eh? I'm giving the driving a go tonight with my husband and my old elastic brace for support. The timing isn't great, but it should give me some idea of whether it's going to be feasible or not. If not, then I'll have to wait and try again after a bit more PT! I'm still doing the biking most days, and I think it's improving that lazy quad muscle slowly....bit too slowly mond, but I suppose that's to be expected. Once something really starts to control to CRPS I'm hoping the PT can really get going.

Bye for now!

Brams 

[Clarkey]

Hi Brams,

Sorry you going through a rough time at the moment coping with CRPS and having to get use to taking Lyrica. While I was having issue with pain in my right knee post op I saw a pain doctor on the NHS and prescribed me Lyrica for nerve pain and was reluctant to take it is used for controlling epileptic fits. I thankfully saw Dr Brown and has some IMS sessions that reduced the pain so never had to take Lyrica.

I am not saying it should be avoided as it the right medication for you to take as it controls nerve pain and should ease the CRPS symptoms for you.

nickwclarke2012@BhamUK

[Brambledog]

Wel it's been a long time since I posted....

I've been using another thread that I'm involved in to record stuff that's been happening, so I suppose I haven't wanted to type it all again here! But I want a record of where I am, and 'when' I am  so I'll aim for a little update now, and I'll start posting here a bit more often (but hopefully more positively)...honest.

****

Where I am now isn't much fun, to be frank. I have been on a steady slide downwards for the last two-three months, where my CRPS symptoms have been spreading and my pain levels increasing. My right knee has also been giving me lots of trouble and I'm worried abut what's going to happen there given that they won't operate at all unless the CRPS is 'under control'. HA! Surely that's a joke? 

The CRPS has spread outwards from my knee, firstly to my left foot, where it start in my big toe, then to the other toes pretty quickly, and now to the whole foot. It has also travelled up my thigh, and I have the allodynia and red rash up to my hip when things are bad. My left foot looks different to my right every morning - it is purply and odd-looking, with yellowing ridged nails (the nail growth seems to have slowed a bit though). Vile. It is bad every evening from about 6pm onwards. It usually starts really quickly, goes very red and swells up and feels tight. It burns like the devil and any contact hurts like hell. I normally put a cool flannel with or without epsoms on it, and that eases some of the heat a fraction - but it's a losing battle as the flannel just warms up on my toasty foot and has to be re-wetted all the time. My poor husband.... By midnight it has generally eased off a bit, but is still painful and sensitive. If I am out wearing shoes/boots and standing or walking too much, it can suddenly feel as if it's on fire and I have to get the footwear and sock off very quickly. It's extremely painful then, and very very red and hot.

My left knee is painful through the day in a general way, gives way sometimes, and is swollen to some degree pretty much all the time. I find standing for more than a few minutes quite painful, and the longer I stand the more my knee swells....and the more it swells the quicker it sets off the CRPS. It goes red, hot and very painful most evenings. I cool it with the Epsom Flannel of Coolness, but again the cloth just heats up and dries out and has to be done again, which gets wearing all by itself! The hair growth has almost stopped and is very sparse over the knee itself, what there is just looks odd. If I've done too much (an arbitrary amount which is getting less and less ) it will go red and hot at any time of the day.

Going to bed at night is something I've come to dread now. My foot will have most likely cooled by then, but is still very sensitive, and I can't lie on my back because the quilt is too tight over my feet and hurts. My knee is generally still hot, and I cannot take the quilt touching it at all. I try different positions, but just can't get comfy enough to drop off. I used to sleep ok, but in the last few weeks that has just evaporated and I can't remember the last time I woke refreshed... If I lie on my back, my foot and knee are unbearable with the quilt touching them, and if I lie on my side, although the CRPS is reduced a bit, it's still uncomfortable and I get the added pain of my left and right knees hurting in an OA kind of way. I toss and turn for ages before I sleep, and when I do sleep I'm getting more nightmares. Hmm.

My right knee is a lot noisier than it used to be and is getting painful more often, and when it does start hurting it lasts for longer and hurts more intensely. It's a completely different type of pain to my left leg, very much located behind my kneecap, and is classic PFOA - stairs, any slight squatting motion, bending down, sitting, getting up. When my R knee is bad I really am scuppered, because I lose the knee strength that gets me about normally. It reminds of how much I rely on that knee and how much of the strain of life it is taking. Every trip up and down the stairs is precious cartilage that is being scraped away. I can hear it. Eww.

I'm quite scared at the moment as to what is going to happen. I know it's not helpful to think about what the future might hold, but equally I wouldn't be human if I didn't. A week ago I finally got a wheelchair with an NHS voucher and some financial help, and I've been out a few times doing boring stuff like food shopping and big stores...boring but fab if you haven't done them for too long! It's hard on my shoulders and elbows though, think it'll take a while to bulk up, lol.

Oh the brain rot. Scary. Can't think of words sometimes, can't think straight, can't concentrate, forgetting basic things, can't retrieve stuff I know I used to know, if you know what I mean 

I saw a new pain doc this week. I was taking amitriptyline again in combo with the Lyrica for about five weeks, but there was no improvement in the pain levels AT ALL and the dry mouth came back with a vengeance, so I wasn't sorry to stop! She has upped my night-time Lyrica from 200 to 300mg, so I am now on 500mg a day, the max is 600mg. I am seeing her in 4 weeks and if there is no improvement she is talking of sending me to the specialist centre in Bath for a residential intensive therapies kind of stay. Fun. Not. She isn't keen on a nerve block either, people now are stating the bleeding obvious with the 'well you are over a year now' comment, so maybe there is a window of opportunity that I have missed....

I have a new physio. I saw him two weeks ago, and am seeing him tomorrow. He knows a lot about CRPS and isn't phased by it. We tried mirror therapy last time and I am meant to look at my right leg and its reflection for a few minutes three times a day. Strange, but kind of ok too. I'm willing to try anything at the moment! The new pain doc is going to contact him regarding a more intensive physio programme for me - ie seeing him more often. That would be good.  My calendar is full of medical appointments....booo......

Can't think of anything else right now and need to stop as making too many mistakes which have to be corrected and drive me mad!!!!

All the best to anyone reading this rubbish. Hope you're having a good day 

Brams 

[Brambledog]

Well dear diary...

I doubt anyone is receding this crap, and I'm having a bad afternoon of deep ice cold burning pain throughout my whole left leg, which is driving me mad. I am not in a good frame of mind.

I had some side-effects on the Lyrica, some horrible electric-shock type pains that happened all over my body and kept me awake in a sweat all night. I saw the doc the next morning (still having the pains), he checked my neuro function and started titration to Gabapentin that day. I think I am having a few less hot burning red times, but no lessening in pain or the icy symptoms. I am scared for the future and my tolerance to the pain. Most of the time I am pretty cheerful and I do as much as I can around the house, do my tutoring and have some fun where possible, but today I did a tiny bit more than usual and am paying a horrible price. Mean.

I convinced myself this morning that I was feeling a bit better and that my walking wasn't that bad, that things might be better than I thought. I had to take the dog to have her clip, and i tried to look normal going from the car to the building, especially as it wasn't far. So I lifted my chin and walked tall, not particularly far, but I tried not to limp and to take a proper step rather than a imping short step. I probably only went about ten paces before the pain increased and I could feel my knee swelling below the kneecap. By the time I got back from dropping her off I could feel the heat starting. I rested up when I got home fro a little while and then a did a few normal jobs around the house before resting again for a little while. When I went to pick her up the pain was there straight away and I really struggled not to limp heavily. I got back home with the dog and sat again, then got my lunch and tidied our bedroom before going back downstairs. By now my leg was getting icy, so I got my blanket out and wrapped up to warm it a bit. Normally this is enough to get comfortable and it eases off to normal levels. Not today.

Think I've angered the beast. My whole left leg from toes to bum is feeling terrible, and nothing seems to help. I've had all my tablets as normal and haven't eaten anything weird, so it can only be the walking today. That just makes me so angry. I try to do just one flipping normal thing and it slaps me in the face. I can't get comfortable at all, and even sitting is hurting on that left bum-cheek, hance my angry/hopeless feelings.

Fed up with it all today. I know tomorrow wil be better, but right now I just want to sleep and have it all go away. Once the family is all home I will go upstairs and try to sleep.

Oh yes, for the last five evenings I've had a large stripe of red rash that feels hot across the back of both hands. I've not had it before. I know not everything is CRPS, but you just can't help thinking it might be.

No one asks me how I am anymore, and if I am obviously in pain it takes a lot for them to acknowledge it. Makes me feel great.

Hell, my leg hurts. I wish it would stop. 

Brams 

[Lottiefox]

I'm reading it. I hope you got some respite and some sleep. You deserve a break from this.

{{{Hugs}}}

xx

[Rknees4]

Hey Brams,
I hear you Girl. 
Hang in there ,,,,the sun will shine again.
Here is a big old hug for((((((((((((Brams)))))))))))))
Take Good Care,
Rk4

[Brambledog]

Thanks guys...

World of Pain today. Saw physio on Thursday and he has got me trying to walk 'properly' - ie even upright gait with a better stride length. Only about ten paces a day to start with, but it is absolutely killing my knee so far. I have a lot of lower medial joint pain high up in my tibia, and the swelling is HUGE. I also have a lot of pain in my right hip, and lower back ache. I know lots of this is because I've been walking oddly for so long, but the bone pains on top of the muscle and CRPS stuff is making me completely miserable. I've stuck it's it so far, but I'm going to ring him tomorrow and just check that this is all to be expected. I know from my arthroscopy two years ago that I had some grade 1/2 in my medial compartment, so I hope that isn't getting worse with the bloody CRPS.

I also have pain in my jaw again from where I am gritting my teeth at night. I'm getting it quite often at the moment. The dentist has checked it out several times and there's nothing wrong dentally, but he says the tissues are getting inflamed from the stress and pressure and causing the pain. Right now I could reply do without it!

Just an update dearest diary. I really hope I can put something more positive in here soon...

On a plus note, the physio says my foot is slightly less sensitive and that my rubbing and desensitisation work is making a difference, so that's something. Whoopee.

Brams 

[Brambledog]

Hi diary and chums,

It's been 2.5 weeks since that drafted walking, and not much has changed unfortunately. I was told it would 'resolve' within a few days to a week, but here i am still! I can't say it's been a fun time as I've been upstairs too much (no downstairs loo) and any walking is very difficult. Me and the chair are best friends if I have to go out of the house!

Going ok at the moment compared to the last two weeks. The resting for a few days, as advised by the physio, didn't really change much with regards to the swelling and pain. When elevated and massaged the swelling went down a bit, but as soon as I had to get up for the loo, meals etc it just filled up again. Yuck. Also, it seemed to highlight the pain when I did have to get up. So a few days ago I abandoned that idea and got more active. I still can't weight-bear fully, but I use crutches and put SOME weight through it evenly. My function is a bit better now with more ROM than I had, and I can get my leg pretty straight again thank goodness (was worrying me), but it has been at the expense of pain, which has increased. I have much worse pain in my thigh, both the bone type pain and surface tenderness, and pain in my tibia too. But I can't lie around for ever, can I?! It's been 2.5 weeks since this started....

I've seen the pain doc and physio during the last few days and tbh they don't seem to have any answers, which I sort of expected but was still disappointed by. No change to pain relief (ie still nothing that has any effect) and staying on the Gabapentin. I've had some heartburn, palpitations, nausea, etc and she said 'yes it is potent stuff isn't it'. Left arm pain, coldness and weakness too. Not interested. Ok then. I have one more shot with physio and then the pain doc wants to send me to Bath for the residential stay. To me it seems like giving up, so I'm looking into alternatives.

I'm going to try and arrange to see another pain doc privately and get another opinion, because I've been reading a lot of research that's being done or has been completed, and there are ideas and techniques out there with that 70-80% success rate (for reducing pain and improving function, not curing! Ha!) that I would like to at least explore. If it isn't suitable for me then fair enough, but my own 'team' seem to have a very limited imagination that follows the course of least cost to the NHS.

So I'm at least getting downstairs now and eating tea with the family again, which is good because I was going a bit stir-crazy. On the down side, the swelling is still as bad, the pain has increased, and I'm having to use crutches for every step. I look back at how pissed off I was with things before this, and long to be back there. Ironic, hey?

I've also found a page of exercises for those 'confined to bed' lol, which I've been doing every day - surprisingly good actually. During half-term I've been getting the children to read them out to me and check I'm doing them right!  they ended up trying some themselves which was funny. Bless. I'm doing some heel slides for the ROM, and quad contractions as my quad is only just starting to wake up again. I've completely lost that straight leg raise I finally achieved all that time ago! It'll come back once the swelling goes down a bit I suspect.

Gosh I hope my next post here is better!!

Brams 

[Brambledog]

Hi diary and friends,

Just a small update 

I saw the PT this week. It's not been good lately, since that walking incident it's just gone a bit wrong to say the least. I can't put my weight through that leg without pain, and it is very wobbly and unstable from all the swelling that just won't go. I've been working at exercises to try and stay vaguely moving (ones for those confined to bed lol, surprisingly good) and have got a little quad cooperation coming back, but it's a bit of a nightmare tbh. Haven't been ale to do much at all for nearly a month now, and although I'm doing a few steps here and there as instructed, my pain levels at rest and moving are still rising slowly. Scary, especially since the pain doc thinks I can't have other pain relief than the bloody codeine and tramadol. Might as well be flipping tic tacs!

The physio does think the CRPS is now throughout my left arm as well. I've been having pain and weakness in it off and on for a while - along with some palpitations from the pills it does make you panic sometimes! It's also started going cold at times, the skin is looking darker quite often and sometimes my rings get pretty tight and the wrinkles on the back of my hand go  for a while anyway lol. I get pain in my shoulder, elbow and wrist, and generally it just feels wrong. I told him I feel like two very distinct halves now - its like some has drawn a line from head to toes and bisected me into one half with CRPS and the other normal. The skin pn my back is more sensitive on the left side, and even my face on my left hand side feels odd. The skin and scalp feel as though I've got a bit sunburnt and it is tight and sore sometimes. The skon over my kmee has gone very very shiny now, i can see reflections of the window in it! Gosh I hate it. It's like being taken over. I only have it in the big toe of my right foot, and I'm trying hard to keep it just there!

So that's me really. I'm so frightened for the future with this bloody thing. I can't see beyond it at the moment, it consumes my mind and body. I hate the pain most of all because it defies everything, and is the one thing I thought modern medicine had some sort of handle on. Turns out they don't, as so many of you know all to well... Even the wheelchair is difficult for any length of time, and crutches are quite hard on the left arm - I hoped for a while that the left arm issues were down to crutches, but my right has been fine and with the other symptoms happening now the physio is pretty convinced.

I'm coming out of the end of a very blue couple of weeks with this when it didn't settle when the doc and physio thought it would originally. I've started knitting lol, as apparently it is very good at blocking pain signals and rewiring the brain. I've signed up to do a meteorology course with the OU with a friend of mine who lives quite a way away from me, but we did our degrees together. I'm really looking forward to studying again as the brain stagnates a bit stuck at home! the tutoring has taken a back seat for two weeks over half terms, but starts again on Monday. I struggle a lot with concentration and sitting still, but need the cash and the stimulation of it, so I'm sticking with it.

Onwards and hopefully upwards. I'm not giving in!

Brams