Hi Spoonies,
my consultant says I have "Regional Pain Syndrome". I am waiting for an appointment with my GP to go through the letter, to confirm that she means Complex Regional Pain Syndrome. When I first read the letter, I mistakenly thought she was saying the pain was all in my head, and got angry because I have swelling and redness on the affected limbs (feet and hands), as well as difficulties with sensation and movement (my right foot tends to drag behind me). My feet are actually deformed now, bending inwards at a rather unpleasant angle. So I thought "How can she say its in my head?"

But then of course, I realised that her description of my problems fitted CRPS/RSD exactly, and I think I may have misjudged her. Seems she was saying "Its in your brain" rather than "Its in your head" (your brain is in your head, of course, hence my confusion). As I understand it, CRPS occurs when a normal injury (partially ruptured Achilles tendon, in my case) leads to an abnormality in the pain sensors, so that even when the joint is healed, the brain continues sending signals to protect the 'injury' (pain, redness, swelling, immobility). Once it is set up in the brain, CRPS can then spread - in my case, to the other Achilles, to both hands and one hip (no idea why the other hip is spared).

I thought CRPS is difficult to diagnose, but now I understand that if a doctor is well informed, and other tests have been done (I've been tested for every disease known to man), it is actually quite straight forwards to diagnose. I'm gradually accepting that perhaps this diagnosis is correct.

I also have metabolic problems with absorbing vitamin D, for which I'm waiting for the endocrinologist, but now my doctors feel that is a secondary issue. It may have contributed to my original tendon injuries, and their slow healing, and vitamin D is necessary for a healthy neurological system, but at this point, with supplements it should not be causing me pain problems. So they think vitamin D was a possible cause, not effect.

So now I'm keen to find out what I can about CRPS. I gather I don't have it severely, but because of the joints affected (my ankles), it makes walking difficult. I am also having major sleeping problems, which is making me fatigued during the day. Anyone know of any good CRPS/RSD sites? RSD UK has shut down

I cannot tolerate amitriptyline, which is the drug of choice in UK. Someone I met recently suggested they needed to experiment with different doses, maybe titrating it upwards, using amitriptyline syrup, to give my body a chance to get used to it, so maybe I need to look into that. I wondered if anyone else has tried it, and if they managed to overcome side-effect problems?

I am currently on Citralopram, an old-style SSRI. I was fine on 10mg, but now they've increased me to 20mg, I am suffering severe fatigue, so I'm cutting it down again. Citralopram is a good antidepressant but does nothing for my pain. I have heard that gabapentin is another good drug for CRPS, but again, I am concerned about side-effects because I am so hyper sensitive to drugs. Any experience with gabapentin?

I want to ask my GP for referral to a CRPS specialist, but I'm not sure if that will be a neurologist or a pain therapist. I'm scared of a neurologist because my skin is so sensitive, I cannot bare being examined. Last time my podiatrist examined me, I passed out, which was horrible (I think I got so tense, due to fear of the pain, I forgot to breathe or something). The neurologist also might test me for neuropathy, and that terrifies me, as its painful for most people, let alone someone with CRPS! I think a pain specialist might be better, but I'm not sure what they actually do, and there's a huge waiting list. Still, if he's the right guy...

Hi Ada,

I dont know if CRPS/RSD is exactly the same than chronic pain syndrome- but the workings/reasons ("in your head" as in in your BRAIN/faulty pain signaling system) is the same-

but typically with cps there is pain=difficulties with mobility, but there is no swelling/redness

now... in a bendy with chronic pain syndrome (many of us have chronic pain 'all over'), if one/two joints also swell/are red- you'd be also looking into a poss chronically/frequently re occurring injury/overuse injury...

with your ankles bending more and more inwards, and if it is your ankles that are swollen and red-

then I feel it might be worth having ankles checked by a bio mechanical podiatrist-
for lax ligaments in ankles, which make ankles unstable/make them bend to one side -
(and yep it is poss to have lax ligaments in just one or a few joints, it doesnt have to be all over)- and of course walking v difficult

podiatrists can make insoles that stabilise the ankle joints-
however if instability is v bad/ligaments v lax then it might need braces-
something like a donjoy ankle stirrup or velocity brace

since I got my ankle stabilising insoles, some 2 yrs ago , I actually have less, what I used to think is 'just' cps, pain in ankles/calves/knees and even hips-
and I didnt even have any swelling or redness...

just a thought
xxg

Thanks Gila,
I have been seen by a specialist podiatrist.

What he says is that I have severe pronation of my feet (wobbly ankles). Again, I think this may be an effect of my low vitamin D, which lead to the injury of my Achilles, which lead eventually to CRPS.

Unfortunately, the insteps he'd like to prescribe for my pronation are quite hard (for Achilles tendonopathy, you are not supposed to have spongy inserts, as that can mean your heal bounces). But I cannot tolerate hard insteps due to my allodynia (touch-sensitive skin) and the inflammation of my feet (they can be very swollen). Also, he is worried about my soft bones, due to the vitamin D deficiency. So he has a dilemma - I need soft insteps for CRPS and osteomalacia, and hard insteps for Achilles tendonopathy.

He said he was going to consult with an expert at the Royal College of Chiropody and Podiatry, but that was 3 weeks ago and he hasn't got back to me. This is another issue I want to discuss with my GP, in case there is a specialist podiatrist I could see under the NHS, who could solve this problem.

FYI, swelling and redness, along with chronic, intractable pain, are the signature symptoms for Complex Regional Pain Syndrome. You can also get abnormalities to sweating, thin skin over the affected areas, and excessive hair/nail growth on affected limbs. I didn't have hyperflexible joints before I got ill - they have become hyperflexible as a result of the tendon damage. Its all a bit Catch-22 really.

brill you're seeing what sounds like a top podi- but indeed what a dilemma!
hope they can figure something out !

and cheers for the cps vs crps/rsd explanation!!
xxg

I didn't actually realise that not all Regional Pain was Complex Regional Pain Syndrome, until you mentioned Chronic Pain Syndrome. I suppose my GP must be familiar with CPS, because that is what he appears to be talking to me about (he trained in sports medicine); however, having read about CRPS, especially the bit about swelling and redness, and having seen a couple of YouTube videos about CRPS, I can see I'm absolutely classic.

Weirdly, my pain has seemed significantly less since I've known what it is. I suppose it doesn't scare me as much. I am worried about it spreading to my arms - that can happen with CRPS, but I gather a key part of treatment, as well as pain relief, is to keep moving the joint, albeit gently.

I am seriously thinking about an electric wheelchair for bad days now - if I use my arms too much with my manual, I could damage my arms or shoulders. I never did get the concept of doing things gently. I tend to do everything h*ll-for-leather. Still getting my head around the idea that this could be a life-long problem, however.

I need that appointment with the endocrinologist to know what is happening with my metabolism, especially my bones. Once I've had reassurance that my bones have recovered from the osteomalacia (caused by vitamin D deficiency), and we've found a way to keep my vitamin D levels sensible, I'll feel like everything is under control. Still a little scared that I may have a vascular bone tumour (one of the possibilities for severe vitamin D deficiency), but I prefer to think it isn't that. It is extraordinarily rare and what are the chances of CRPS and a bone tumour? Lightning rarely hits twice.

Hi Ada,

You had asked if anyone knew of good websites about RSD. Here are a couple of ones that I really like.

http://www.rsds.org is the website of the Reflex Sympathetic Dystrophy Syndrome Association. I have found a ton of valuable information and had a ton of links to other RSD sites all around the world.

http://www.rsdhope.org is a website with a ton of detailed information about treatments and others experiences with different treatments.

http://www.rsdlaughter.com is a website that has some information on it. But, what I find the most valuable on this site is the message boards. They are great for learning about different treatments and how they have helped or not helped others. It's nice to be able to see other people's journeys and they are dealing with this disease.

I hope these websites help you with answering some of your questions. I will try to post more information later and answer some of the other items that you had talked about. Right now my entire body from my neck down is on fire...I think my RSD is spreading once again

Thanks Trisha,
from having a look at these sites, it appears my doctors have pretty much done everything wrong - leaving the condition to progress, aggressive physical therapy, treatment with ice... Its amazing I'm not a lot worse. It appears that I'm already on an advanced stage. It has been 16 months now since I first got injured and although I have a diagnosis (of sorts), I have had absolutely no specialist care.

I do fear that if I go for pain therapy, and the doctors are not familiar with CRPS, I could end up a lot worse. My friend probably has CRPS (diagnosed as fibromyalgia) and she has got to the point of having toes amputated in an attempt to relieve her pain. Now she's injured her arm and I worry about her future

American websites say "CRPS is a relatively common condition". UK websites say "CRPS is an exceptionally rare condition". Makes me wonder who's right (I suspect the Americans).

I'm obviously not as bad as some. Although I've had the "my skin has been stripped from my hands/feet" feeling, mostly its a low-grade burning, aching sensation which doesn't bother me so much in the day. I've got used to it. Its at night I'm struggling - I can't sleep properly and the pain wakes me up. Also, my pain is best when I don't move at all, but that's terrible for my overall health. I now have severe muscle wasting, bone loss and am becoming more and more disabled. This is not good.

I think the pain therapy I've had has been mostly aimed at psychological issues, which is not unhelpful (and not dangerous) but I'm struggling to accept that this pain may be intractable. What I really need is some proper, medical, scientific information about the treatment of CRPS, so I can show my doctors, who are really short for time but really ignorant. It would be nice to find a CRPS expert in UK. I hate being the expert of my own condition when the doctors know naff all!

Still, could be worse. I didn't like those descriptions of CRPS at all. I always said I had a high pain threshold - seems I was right

As you live in the UK you need to check out the Walton Centre for Neurology, Liverpool. Dr Andreas Goebel is in charge there and they do lots of good stuff. They seem to be particularly interested in CRPS/RSD unlike most MDs.
Their website is www.painrelieffoundation.org.uk/docs
Mag1

Thanks. I spoke to them on the phone, but they seem mostly a research charity. Dr Goebel does do clinical work, but it is pointless asking for a referral there as Liverpool is a long way from me and prohibitively difficult to get to. I have discovered a rheumatologist at Addenbrooks in Cambridge with an interest in CRPS, who is much nearer. However, he'd be rheumo no.3 or 4, and I'm not sure my GP would refer me to someone else for the moment! (rheumos keep discharging me).

OTOH, I have found a brilliant podiatrist, privately (not on the NHS) and he is referring me to Northampton Hospital where they have a specialist foot unit, and the doctor in charge has an interest in CRPS as it pertains to the feet. The specialist is currently stuck in India, so in the meantime my podi has been helping me with bespoke orthotics and has adapted my running shoes. I've been getting on really well with them, after the initial wierdness of wearing proper shoes after almost 18 months. My gait is significantly better with them.

Turns out as well as CRPS, I also have hypermobile feet and managed to sublax my small toe bones, which hurt like heck. They're improving now though, thankfully.

My GP is also treating me with gabapentin, which seems to be working even though I'm only on a small dose for the moment. So things are gradually falling into place. I'm not sure I need a specialist in CRPS as long as I'm being treated. My GP is prepared to tell anyone who asks (like disability benefits people) that I have a chronic pain syndrome and have damaged feet, and to be honest, that's all they really need to know. But thanks for the info anyway.

I'm on amitriptyline and gabapentin. The gabapentin works well, but it doesn't fully work. As in, all of the pain isn't gone. I do not have a diagnosis, though they are thinking RSD, which is CRPS type I. I hope your pain gets better.

Have they suggested Lyrica? My rheumy wants to put me on it as he says its a better drug than gabapentin, albeit similar.

I don't think any meds are going to relieve 100% of our pain. It's about learning to live with it, I believe. It's worth getting your vitamin D checked - low vitamin D can exacerbate pain perception. It also increases the likelihood of minor injuries that can lead to CRPS/RSD.

My rheumatologist had briefly suggested it, but we don't go to him anymore. He told me that my arm pain was tendinitis from my violin. The violin I hadn't touched in a month and a half because of my migraines (well, at least we think they are migraines). I told him that, and he understood. He still stuck with the tendinitis explainiation. And he said the migraines were all in my head. He gave me tramadol (which is a non-opiate opiate. My neuro promptly took me off of that) to give me a 'positive attitude on the pain'. Really? His explaination was that I would think that this pain wouldn't kill me and it would go away. He told my mom to take away my crutches because I didn't need them. I have had my vitamin D checked, it was low. I am on like 2,000 IU of vitamin D a day. I'm also taking calcium too. I know nothing will take care of all of my pain, I just feel like there could be something better out there. Seriously, it's like the edge of my pain is cut off, but it still hurts a lot. I mean a little bit of pain control is better then no pain at all, but I think my pain control could be better. The other thing mensioned about Lyrica was that it is uber expensive. I guess insurance companies reject it sometimes because of how much it costs. I also think the FDA didn't approve it for people younger than 18. Not exactly a big deal because I was on maxalt, which again was not approved for people under 18. The maxalt was also really expensive ($200 something for 6 tabs. It never helped the pain. Just drained me) and our insurance would cover it so we only had to pay like $30 for it, which is more than most scripts, but better than full price. I also was tested for every disease known to man that shows up in blood work.