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Author Topic: reflex systemic dsyfunction (RSD)  (Read 2636 times)

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Offline kateplate

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reflex systemic dsyfunction (RSD)
« on: October 08, 2007, 06:39:46 PM »
Hi there,

I had a pretty minor injury to my left knee in May '07 which resulted in an arthroscopy and partial medial meniscectomy. Having had a similar episode in my right knee last year I thought I knew what to expect. Unfortunately, I am now 4 weeks post op and I have still got unbearable neuralgia and associated symptoms in my left leg which radiate from the lateral aspect of the joint to my three biggest toes and sole of my foot. It has been suggested that I have RSD and the pain is currently being managed via Tramadol (Zydol). Does anyone know much about this syndrome or which path I should follow for treatment? Should this be treated aggressively or conservatively?

Thanks for any comments.
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline friendsfan

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Re: reflex systemic dsyfunction (RSD)
« Reply #1 on: October 09, 2007, 09:36:16 AM »
hi, ive recently been diagnosed with CRPS,  which is the new name for RSD, and i find that no amount of pain killers will keep the pain away.
http://artzoo.com/health/print.htm...click on this link ive found the info quite useful, theres a lot of info on.
if it is RSD you REALLY NEED TREATING ASAP, as the sooner you start treatment the highest chance you have of going into remisson, so push to see a doctor from pain clinic.
all the best 
5-3-07 injured knee-no ROM
2-5-07 LK scope + MUA
26-6-08-LK TTT and scope
10-12-08-LK MUA
12-6-09-RK scope
26-8-09 RK TTT

Offline kateplate

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Re: reflex systemic dsyfunction (RSD)
« Reply #2 on: October 09, 2007, 10:59:27 AM »
CRPS was mentioned to me by a friend who is an anesthetist but I didn't realise it was a new term for RSD. Thanks ! He suggested Western accupuncture as a possible treatment, but also talked about nerves blocks. I'm seeing my surgeon on Thursday for a review, so will ask about referral to pain clinic. The GP had suggested that it SHOULD settle down on it's own, and wanted to give it another 6 months, but chronic pain is hard work and having looked into this abit more I think you're right that it should be dealt with asap. Have you found any treatment in particular better than others?? How do you cope when the pain just won't go away?

Always encouraging to know that other people can understand what you're going through. Cheers.
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline friendsfan

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Re: reflex systemic dsyfunction (RSD)
« Reply #3 on: October 09, 2007, 05:40:40 PM »
Hi, this will have to be quick as Ive typed you 2 messages and my computer has been misbehaving.
First of all I cant believe your GP said that, if it is CRPS it need treating ASAP. Are you in the UK? 
I havent found anything effective as yet, my treatments are Physio, TENS and Gabapentin. i will be having accupuncture soon.
If you want to chat some more about please feel free to Email me
Faye
5-3-07 injured knee-no ROM
2-5-07 LK scope + MUA
26-6-08-LK TTT and scope
10-12-08-LK MUA
12-6-09-RK scope
26-8-09 RK TTT

Offline Nettan

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Re: reflex systemic dsyfunction (RSD)
« Reply #4 on: October 11, 2007, 06:19:12 AM »
Kate, if painmedication and easier treatment like TENS unit isn't working often blocks are effective. Be sure to be treatened by a specialist in pain.
Don't listen to your GP that you should wait out for 6 months. To get better you need aggressive treatment ASAP.
If you aren't having a painmanagement doc..get refereal to one. A GP isn't educated enough to help you.
Also meanwhile listen to your body. RSD/ CPRS pain isn't indicating that you have a damage in you..more or less a condition in the body giving you awful pain. Ice do usually aggravate, if you don't know.
I have lived with RSD/CRPS for 9 years..feel free contact me if you have questions.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: reflex sympathetic dsyfunction (RSD)
« Reply #5 on: October 11, 2007, 12:10:27 PM »
Hi - thanks for comments and replies. I saw my OS today and he was happy with the arthroscopy / meniscectomy results and baffled by the continuing pain and neuralgia. He advised me that this isn't really his problem anymore because mechanically the knee is fine. He mentioned that he has seen at least 2 patients who have had 'mirror' pain, where the side of the knee injured also causes pain on the opposite side of the knee. Again, he advised me that is SHOULD settle down. The trouble with the UK NHS is that docs are very keen to fob us off because resources and money are limited all of the time!

I've taken a look at CRPS and pain management. So far my GP has offered amitriptyline (worked to a certain degree but side effects were awful) and tramadol. I'm due for a review in 2 or 3 weeks.  Does the gabapentin have horrid side effects or is it worth a go? I'm likely to go privately to see a consultant so do you think a neurologist or a pain management doc would be better?? Certainly agree that this needs urgency, and guess I'm going to have to be pro active to sort this out.

Also - can anyone tell me about the different symptoms of CRPS? I currently get shooting pains down my leg which come out of the sole of my foot and my toes, and also strange sensations like boiling water dripping down my leg, numbness in patches on my leg and the top of my foot, and sudden feelings of coldness in my feet. Is this what other people get?

Thanks 
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline Nettan

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Re: reflex systemic dsyfunction (RSD)
« Reply #6 on: October 11, 2007, 01:11:54 PM »
"There are Two Types of CRPS - Type I and Type II.

CRPS Type I (also referred to as RSD) - cases in which the nerve injury cannot be immediately identified
CRPS Type II (also referred to as Causalgia) - cases in which a distinct "major" nerve injury has occurred

Criteria for Diagnosing

Complex Regional Pain Syndrome Type I (RSD)

The presence of an initiating noxious event, or a cause of immobilization
Continuing pain, allodynia, or hyperalgesia with which the pain is disproportionate to any inciting event
Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain
This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction

Complex Regional Pain Syndrome Type II (Causalgia)


The presence of continuing pain, allodynia, or hyperalgesia after a nerve injury, not necessarily limited to the distribution of the injured nerve
Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1C difference from the homologous body part), or abnormal sudomotor activity in the region of pain
This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction. "

I hope this will help you see the differences. I have all of the signs that you have.
A painmanagement doc is best unless the neurologhist has a special interest in painmanagement. I did see a whole team specialized on pain...OS, neurologhist, neurosurgeon,rehab doc, anasteologhist, psychologhist and phys.
« Last Edit: October 11, 2007, 01:15:13 PM by Nettan »
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: reflex systemic dsyfunction (RSD)
« Reply #7 on: October 12, 2007, 01:28:27 PM »
Hmmmm....all sounds pretty awful. Hope it's not too bad for you at present.

We're going to contact a pain management Doc today and try to get some advice and treatment.  Has anybody out there had a sympathectomy, and if so do they work??  I've heard that they can do these with Doplar to stop the nerve working, and it beats having invasive surgery, but presumably the op would be pretty minor in terms of incision and recovery?? The general feeling I get is that aggressive treatment as soon as possible after diagnosis gives the nest prognosis. Does any esle have an experience of this?

Invaluable support from you all at present - thanks
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline Nettan

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Re: reflex systemic dsyfunction (RSD)
« Reply #8 on: October 12, 2007, 09:15:51 PM »
Here you can read more about this procedure...
http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/sympathectomy.jsp

Where I live this is not a common procedure used. I don't really know so much about that myself as that has not really been a issue for me.
Though treatment and an aggressive one ASAP often gives best outcome for RSD.

I live pretty good, but some days more just exist. But a good attitude makes RSD easier to live with.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline sammers

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Re: reflex systemic dsyfunction (RSD)
« Reply #9 on: October 12, 2007, 09:53:34 PM »
I only have a second to write, but I had a running injury last January and since then have had terrible chronic burning pain on both lower extremities.  I have seen multiple docs and all have said I don't quite have RSD but a lessened version of it (no swelling or skin color changes)  I am currently on doxepin at night which is similar to amytriptyline and lyrica (a newer nerve pain drug).  I was on Neurontin (gabapentin) but it didn't really work for me.  The lyrica has though, so maybe inquire about trying that.  A positive attitude is a must because chronic pain can really drag you down.  Good luck and I hope it gets better soon.

Sammers
 

Offline kateplate

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Re: reflex systemic dsyfunction (RSD)
« Reply #10 on: October 16, 2007, 01:29:58 PM »
I've checked out a couple of different postings on the bulletin board, and TENs is mentioned quite often. I'm really new to this and wonder how they work, and where you put them??!! Is it a direct nerve stimulation, or do I need to have identified the root nerve which is causing the problem and then treat higher up?? If the pain is in my lower leg is that where I treat? I've only used TENS during childbirth in the past, and that was based on my back.

Also....  if I get to see the pain managment specialist can anyone tell me how it works?? presumably they take a thorough history and then work alongside my GP, physio and OS. I feel there's been a real breakdown in comunication between the different dep'ts that I see, and continuity would help. Do you think they are likely to automatically copy all docs into all letters or do I need to push for this?

Thanks
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline Nettan

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Re: reflex systemic dsyfunction (RSD)
« Reply #11 on: October 16, 2007, 06:40:15 PM »
I would push for getting all papers there..normally if you have someone refering you, they only send what they have.
Painmanagement specialists works in different ways..either you can see a whole team that take care of you, you can have one opinion from the painspecialist sent to the one who refered you and go from there or the painspecialist will take over some and guide the other ones.
TENS unit..here is some information...
http://www.patient.co.uk/showdoc/23069069/
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: reflex systemic dsyfunction (RSD)
« Reply #12 on: October 17, 2007, 05:04:06 PM »
OK...that's really useful stuff. Thanks Nettan.
I checked out the TENs info and I can't understand why this type of pain relief isn't promoted more often. The thing that scares me about all of this is the side effects of some of the drugs. I've only tried a couple so far but they seem to knock me out and give me all sorts of weird and wonderful experiences. The main thing for me is to control the pain at certain times of the day so that I can function for the rest of the time. The tramadol helps to a degree at night, but if I take a big enough dose to kill the pain i end up throwing up. The amitryptiline sent me to sleep. Guess I really need someone to sort out the balance for me. Has anyone in the UK come across a really good pain management clinic?? I could wait along time on the NHS and really need to get this sorted before my life passes me by. I have accepted the fact that I will probably need to live with this long term, but the apathy of doctors is v frustrating. I am determined to regain control asap. 
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.















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