New member, CRPS or not?
 

Hi, my name's Robin, I'm a middle-aged male, single, living alone in a rural area of central Scotland, UK.

A few days ago I told my physiotherapist that, having done some research, I thought I probably have CRPS type I, and he agreed that seems likely. I've yet to discuss it with an MD. I'm due to have acupunture at a pain clinic on Friday when I might be able to have a short chat with a doctor, otherwise I'm due an evaluation at the end of the course of acupuncture, in a couple of weeks, when I expect to be able to discuss the big picture with a pain specialist.

The problem is in my left knee. I first injured it many years ago, but about 2.5 yrs ago it got hurt on a hill walking expedition and it's been getting worse very gradually ever since. I used to do a lot of hill walking but haven't done any since that incident.

When I say it's been getting worse I don't mean steadily: there's a cycle in which I rest and it gets better, then I get more active and it gets worse again, but the general trend is for the lows to be lower and the highs to be less high each time around.

A bit over a year ago I had surgery on the knee: debridement and decompression of the patellar tendon. The operation seemed OK (as far as I know) and the wound healed very well but then it seemed I was back where I had been before the op, except maybe a bit worse.

I saw the surgeon occasionally, and a physiotherapist regularly for a while, with no improvement, then eventually the surgeon noticed that my left leg seemed cooler than my right, and there was some discolouration of the skin on my knee, and he decided to refer me to a pain clinic and a different physiotherapist. This was towards the end of 06.

Unfortunately, neither RSD nor CRPS nor chronic pain syndrome was actually mentioned until a few weeks ago, so I was skeptical and paid for a second opinion and MRI. The scan showed nothing significant and the second orthopedic specialist agreed with the first. (It was unfortunate in financial terms but maybe a good thing in that it convinced me that there's probably no major mechanical problem.)

The pain specialist decided to try acupunture first. I had three sessions, from which I noticed no benefit, then they switched to electro, and I thought my knee felt slightly better for an hour or two after. When I said that, they decided to increase the course from 6 to 8 or 9 (not sure) sessions in total, on a weekly basis, so I'm due 2 or 3 more.

I've gotten the most info from the physio, who when I first saw him mentioned "chronic pain syndrome" and took the time to explain how nerves can get "activated" so they keep reporting pain even when there's no good reason for it. It's only looking back that I can see that's what the specialists and my GP have had in mind.

My actual pain levels are not that bad. I'm not using any prescribed meds just now. Most days I take just one 400mg ibuprofen for comfort in the evening. But the activity level I have to keep to is very low. I stopped working towards the end of 06, I get food delivered, and, apart from medical appointments, get out just once most weeks, to see my elderly and frail parents on a Sunday afternoon. I spend almost all day, most days, sitting in my armchair with my legs raised, using my laptop, reading or watching tv. If it wasn't for the laptop I'd go crazy! I have a couple of websites of my own and run ones for other people. Also, as I was a self-employed computer technician and still have ads in some directories, I get regular calls from people with pc probs, and do what I can to help them over the phone.

My big problem right now is that, when I work on the laptop, my leg muscles tend to tense up, which sets off the knee pain. It feels very like a muscle or tendon strain, and if it wasn't for the temperature and colouration anomalies, and the clear MRI, and the time it's lasted, I'd be quite sure that's what it is. (It gets inflamed sometimes too, but that could happen in either case.) It seems like I only need to avoid putting any strain on it at all for maybe 3 or 4 days and it would get better -- it has done in the past, in the short term, before "going" again -- but it's very difficult to reach that level of inactivity, living alone, and it seems to take less and less to set it off.

That's probably enough for now. I'd be particularly interested in hearing from people with similar symptoms, and those who have strong views on whether I probably do or don't have RSD/CRPS, but any comments will be welcome. Thanks for reading this far.

a hearty welcome to you Robin!

I visited Scotland during the 70s, when I lived in Britain, and have a very special affection for it :)

I am so glad you found our community tho sorry for the circumstances that bring you here.
Do also introduce yourself on the other forums here that meet your needs.
I know you will find much support and information and experience on our RSD and chronic pain forums.

again welcome to you and let us know if you need any help finding your way around the NeuroTalk Community

Thanks very much for the welcome, Chemar, and I'm glad you like Scotland! I only really appreciated it after living away from it for a while.

Is it acceptable if I just copy/paste that msg into the RSD Intro forum?

absolutely OK to copy and paste, Robin...

Thanks again Chemar

Thanks, Rogue. I'd noticed that most or all of the RSD/CRPS stories on-line seemed to involve much more pain than I have. On the other hand, I just noticed another symptom: the skin on the affected knee does seem shinier than on the other, like somebody's been buffing it up, except I think I'd have noticed that. I hope to get a chance to talk to a PM during my acupuncture session tomorrow.

Seeing your sig, I wonder whether you meditate?

Practice makes perfect! For the basics, I learned from a Buddhist teacher in person, which is probably the best way, but there's lots of information out there, for instance the Wikipedia page on mindfulness, which mentions the use of meditation for chronic pain. I generally "follow the breath", which means focussing on the sensations (not the sounds) of breathing. Place your attention on the in and out movements of the stomach for relaxation and stabilization, or on the subtle sensations around the nostrils for improved focus. At first I counted breaths (in and out as one), up to ten, then starting again. Each time you lose count (and you will!), you should resist the temptation to get annoyed or frustrated, and just start again. Nowadays I just focus on the sensations. 20 minutes once or twice a day is probably plenty for most people, but some teachers say you can do more if you're unwell and you feel it helps.

Be peaceful!

I spoke to one of the PMs today and she's quite dubious about my condition being CRPS, due to the relative mildness of the symptoms, although she also said that it can be more or less severe. Anyway, we agreed to give up on the acupuncture and I'm to get gabapentin from my GP for two months before re-evaluation.

Interestingly, I've managed to get a bit more relaxed this afternoon, which is definitely linked to less pain in the knee. I really think it's worth working (if that's the right word) on that.

right on!
 

Having no definite diagnosis is certainly a pain in itself. I suppose I just have to go back to "chronic pain syndrome". The PM was really quite airy-fairy. I said it seemed like CRPS and so would like to try gabapentin, she said she thinks it's probably not CRPS, and gabapentin wouldn't be her first choice even if it was, but why not try it anyway? I don't blame her, I think that's probably the only attitude she can take in this situation, but it doesn't inspire confidence.
I'm sorry about your epilepsy diagnosis. My mum has temporal lobe epilepsy as well vascular dementia (she's 76), and we think a fall due to an absense seizure is probably why she broke her thigh last year, which very badly affected her state of mind, though she did recover relatively well. I guess a fall could be much worse for you (I don't want to worry you, but we need to be realistic, and you've probably worked that out for yourself anyway).
Despite not being Christian, I do sometimes find it helpful to think "these things are sent to try us".

Hi Robin

I posted after your introduction on the RSD thread. I am from the SE UK (Suffolk) but am in university in Bath. RSD pain is very distinctive - the mixture of burning, alloydinia etc - do you have alloydinia? Just out of interest - if you do too much do the painkillers help you recover from the extra pain of it? I know there is a type of RSD where there is very little pain but other sympathetic symptoms. I think (not a dr here) that following the path of perhaps a different diagonsis OR confirmation of RSD/CRPS through another pain specialist is advisable (Though I know how hard it is to get ANY in the UK!).

Take Care, Love

Froggsyxxxxxxxxx

Welcome Robin
 

:grouphug: You are certainly making valuable contributions to our Site already!

Take Care

I just replied to that.

Just did a web search on that. Google listed just four pages, two of which are on neurotalk! But no definitions. But reading between the lines, is it pain from a mere touch? In which case, no, though my sense of touch is affected, seeming just slightly strange in the affected area, slightly "electric".
Re the "burning", I do have that sort of pain, but not much until recently. I get a variety of types of pain, at various places around the knee, though it's mostly in front, over the patellar tendon region. Just recently I've had more of the burning sort, though, which feels to me very like a muscle or tendon sprain, both re pain type and the way in which it's linked to activity. It seems to be associated with a weakness, so that, the worse it is, the more easily it's made worse still. At the moment it's so bad that just a little tension in the leg muscles will set it off. But it's not excruciating, or anywhere near that. My main concern is how much worse it might be made by activities I can't (or won't, to be honest) avoid.

I seem to get some benefit from anti-inflammatories like ibuprophen and diclofenac.

Thanks for that. I'm not sure about getting a second opinion when the first specialist hasn't really expressed an opinion! But I'll talk to my GP about it.

Thanks again, and you take care too.