Reflex Sympathetic Dystrophy Syndrome

[smiley026]

Anyone know anthing about Reflex Sympathetic Dystrophy Syndrome ? or nerve damage?

[Mischap123]

It's the body overresponding to what may be a trivial stimulus. It usually can occur post trauma. It's very hard to treat but I think nerve blockers are a widely used treatment

[leeloo]

Hi there, I was just wondering if you found out anymore information about RFDS. I had a fairly significant ankle sprain approx 3 months ago, and am struggling to get full range of movment in my ankle due to stiffness as well as it being quite tender to touch. The specialist I have been seeing now believes that I may be suffering from this syndrome. I have been advised by my physio to get a second opinion as he doesn't agree with the diagnosis. I was just wondering what your situation is and your experience with this syndrome. Thanks

[smiley027]

sorry it has taken so long to reply Ive been seeing numerous doctors and getting quite sick of it, I seen the foot specialist and one time he said I have CRPS type 2 which is the same as RSDS and then the next time I seen him he said it was CRPS type 1 , it is basically nerve damage , Ive had a cortisone injection which was so painful I was crying my eyes out while he was doing and he only gave me half the dose because it was too painful from the needle, then the next time I seen him he put me on panafcort which is steroids they worked after taking them for about 3 weeks but I had to stop taking them and within a week the pain started returning but I cant really take steroids the rest of my life ... was meant to see a pain specialist a week ago and the secutary calls me a day before my appointment after I'd been waiting for 4 months telling me they have moved and hour away from where it was originally excuse my language but Im getting quite pissed off and depressed from all this bullshit and pain Im a single parent on the pension and I cant really afford to see specialist's and when I do they dont even know what they are doing my specialist told me to see the pain specialist he said because he knows more about the condition than him so he's basically telling me I'm wasting my time seeing him becasue he doesnt know much about it and he cant do much for me

[Happygirl]

Hey Smiley
I have a tentative diagnosis of CRPS (or RSD) in my right foot, have had the symptoms for the last 2 years and I totally understand how frustrated you are feeling. I'm a physio student and I really dont want this controlling my life. The horrible frozen cold pain, the intense hypersensitivity, the purple/grey colour, the burning, you cant bear weight through properly the fact that your nails dont grow and the fact that no pain meds touch the pain and it drives you crazy...

For some reason everybody seems really reluctant to label it as rsd and just go around saying nerve damage, abnormal nerve response to pain blah blah blah. It was my podiatrist who really took on board and made me start to realise just how big this thing is. Are you keeping your appointment with the pain specialist? I hope you do and that they are able to help you...my pod told me it was a good idea as they can help you manage the pain in many different ways. I talked to my ortho surgeon about seeing a pain specialist and he said it would be a good idea so I am just waiting for a referal to get an appointment. I'm hoping that they can recommend something that helps me manage my day to day living better than I am at the moment.

I have been taking gabapentin for the last 7 months and it helps make the pain bearable so that I can actually half concentrate on something other than the pain. I got to the point before he put me on the meds where I couldnt do anything because the pain was so horribly distracting and driving me insane. The awful purple/grey colour is not as intense, but if ithe weather is at all cold its still hard to cope with but at least on the meds it doesnt drive me insane as much.

Nerve blocks have varying outcomes, research hasn't shown them to actually be that effective but I know they do help some people so it really pays to be able to see the pain people and see what they have to say about you...are you able to get to see a specialist through a public system (I have no idea where you are situated)?

There is a little info on the web about it but not much is really that helpful, there are loads of different meds people with rsd are put on so dont give up having just tried one...your life is important...

Keep in touch

[smiley027]

hey, Ive just got a referal to the liverpool public hospital pain medicine and research centre hopefully they can help me and all I need is my medicare card I was told, so I dont have to pay some idiot $210 which I cant afford anyway, I dont know why the foot specialist didnt refer me there in the first place instead he made me keep making appoinments with him and wasting my money and the last time I seen him hes going on about some 10yr old boy with bone cancer like how is that supposed to help me, so Im not going to see him anymore since that last episode and when I went to cancel my last appoinment with him was talking to the secutary I told her my name and that I wanted to cancel the appoinment and she decides to hang up on me I tried to call back and the phone was engaged so Ive totally given up on that doctor , so Im just hoping this pain medicine and research centre know what their doing Ive been using mersydol night for the pain ever since I stopped the panafcort which I think Im getting immune to as its not helping as much wish I could take 3 tablets instead of the 2 it says to take every 4-6 hours but dont think thats a good idea I will just have to put up with it until I see someone who knows what they are doing, good luck to you and your pain management too

[bearlyirish65]

Hi, I am sorry to hear that you have RSD. I hope that the info I provide for you is of some help to yourself if not others, in a similar situation. I was diagnosed with RSD almost 11 years ago now. Did you know that the condition is now called CRPS Type1/11.
CRPS Type 1(was RSD) is where you have a nerve injury that cannot be immediately identified, along with common symptoms of pain, swelling, loss of movement, changed sensations, skin discolouration etc,etc
CRPS Type 11(was called Causalgia) is where a distinct "major" nerve injury has occured, along with the common symptoms of pain, swelling, loss of movement, etc, etc like in CRPS 1.
The most common factor between the two types of CRPS is that the symptoms persist long past the time expected for normal healing to occur.
If you do a search for Reflex Sympathetic Dystrophy and for Complex Regional pain syndrome, you will find quite a few sites with information on both types of the syndrome so that you can learn more information. Sadly to date, no one has been able to find the magical cure we all wish for to help us rid of this terrible life altering condition, but recent developments in pain management have at least provided some hope. Learning how to deal with your personal pain is one of the hardest things to overcome. Apart from a large cocktail of various medications that I take several times a day, I have learnt to rely on self meditation to assist in my pain management.
There now also seem to be pain clinics being set up in hospitals & other medical setups where a lot do recognise the CRPS & the difficulties one has with controlling the pain levels etc, so you may find it beneficial to search out one of those for yourself too.
Wishing you all the best in your search for relief. there used to be an Australian support group for CRPS, but it was recently stopped due to increased health issues of the lady who ran it. Take care, & I hope someone can help you soon