Just need to vent

[tink1976]

Brief history.. I had a Fulkerson TTT, lateral release, microfracture chrondroplasty, and scrape of arthritis and have 2 screws in my shin just under my knee back in Sept 2010.. I developed RSD/CRPS in that left a few months after surgery.. This past August I had a power wheelchair fall on the same leg and break it in 4 place just under the knee near where the screws are. Thank God it didnt not damage my hardware. I am non weight barring till November 7 (well that is the when I go back to my OS)I was in a straight leg cast from Aug 9 till a week ago. Now Im in a hinged brace. I have done really good with ROM.. I am right at 90 degrees. But here is the issue.. The brace is affecting my RSD/CRPS. I dont have to wear it all the time. But if Im up and about which I try to be ( i in a wheelchair and use a walker..too clumsy to use crutches) I have to have the brace on. Sometimes it hurts so bad. Feels like bees are stinging me and somebody is scratching sunposion. The sensitive area is on the right side of my shin and goes down onto my calf. That is where the brace is also. I cant tighten it but so much right there as it will press against it and hurt worse. When I take the brace off and just rest I will sometimes get this real sharp pain in the side of my knee and will be unable to straighten it or bend it. It doesnt last long but happens more when I dont have the brace on. So I feel that either way I go Im screwed. I try not to complain too much as that is just about the only pain I have and it is not constant. Of course when I bend past 90 it hurts but that is expected with it being casted for so long. Also I have servere atrophy is my quad and my calf. My right leg is 3 times or 4 times smaller then my leg. Looks almost deformed. I know I will get that back when ( well some of it) when I start Pt which will be when Im non weight barring. My family is going through alot so is my best friend and my fiance. So I feel as if I cant really vent to them. My mom found out she has osteoporosis and is taking care of my 3 kids and my nephew while Im recovering ( I live with her) so she is under alot of stress. Just feel like everybody I ususally turn too has alot on them already and I dont wanna put more on them. I HATE this brace. It hurts and irriatates me and Im not sure what to do. My OS said I would just have to deal with it for now and told me to take my meds ( neurontitin and vidocin) and I do but it doesnt seem to help. It even seems like the hardware in my shin is hurting too. I just want a day of no pain. Sometimes the cast was more comfortable then this brace. My OS has adjusted my brace as much as he could but it still is rubbing on that leg.. Even if I wear pants under my brace.. seems not to help.. Ok Im done now.. sorry it was so long.. I will shut up now lol

[Arity]

Aww Tink - no need to shut up. You have been through a lot and are perfectly entitled to vent!  I feel so bad for you

I don't have RSD thankfully so I can't offer any advice or suggestions, just a thought and a ((hug)).  You are not alone!!!

[tink1976]

Thanks Arity. That means alot!!!

[Lottiefox]

Tink

No need to apologise - you have been through seven shades of **** with your poor leg. I have RSD in my foot after surgery in April. Thankfully *touch wood* mine has responded to drugs, physio, activity etc and now seems to be in 3 toes only and a little bit on the side of my foot. I am still on my meds though. I can only say that things DO get better with the right treatment, and when you're more mobile you will be able to do the things you need to do. Hang in there. RSD is a really bum deal, it is so danged rare but we are special enough to get it!!!! Is there any way you can put anything on the part of the leg that is so irritated by the brace - I find my foot really likes a damp, slightly warm sock around it. I have been filling the sock with epsom salts and then putting a damper sock over it again - kind of like a warmish sock wrap - but it seems to help. I know a foot is a lot easier to deal with then the knee and leg...but just a thought. Try and keep your ankle moving as much as you can too, not sure how much you can pump it etc but RSD eats away at your muscle strength....as you know.

It WILL get better. We understand. Vent here when you need to. I really get the RSD ****. Hang in there.

Hugs xxxxxxxxxx

[tink1976]

Lottie.. I can take the brace off when Im resting in bed so I stay in bed alot. It has seemed to help with not having the brace on it irritate it and also with it getting colder..which sucks for rsd, but I am able to wear real soft sweat pants. I have gotten my ROM pretty good. While I lay in bed I bend my knee and move my ankle around alot to keep it from being stiff. The only thing that concerns me is the PT. I have heard that being too active can make RSD worse. But with the kind of PT Im going to be needing is very aggressive. Lots of strengthing and if Im not back to full ROM then of course that too. Also I heard that ice will make it worse but yet at the end of every PT session they will ice up my leg.. They use this machine that is full of ice water and has a hose connected to it and they will wrap your leg in a brace type thing kinda like an immoblizer and a hose is hooked up to that iit kinda feels like it pumps ice water into the brace..not sure how all that will affect my rsd. Im going to tell the PT place I will be going to about my RSD and see what they say. Thanks for the ideas with a damp warm cloth.. I may try that when Im resting too.. or when Im up and i have to use the brace. Maybe take an ace wrap and have it be dampned with warm water and wrap it around my leg before I put the brace on. I never thought about that. Great idea. Well thanks again and hope all is going well with you. If you or anybody else has any insight on how PT will affect my RSD or the icing of my leg will affect it please let me know.. ohh and the ice brace thing.. is from my ankle up to my mid thigh..if I go to the same place I went for my knee surgery. Take care and I will keep everybody posted

[Nettan]

This is why you never should use ice on RSD affected limb:

1) Some of the symptoms of CRPS, such as pain, discoloration, and spasms, are due to a constriction of  the blood vessels. This causes a reduced blood flow to the extremities. many of you have seen the color show your feet/hands, legs/arms have put on where they turn dusky, purple, etc. and have felt the pain of the constriction as if your limb was being strangled, have felt the extreme coldness due to lack of blood flow, etc.  These are all partly due to constriction of the blood vessels.


Now when you apply ice to that same affected limb you are constricting, shrinking, those blood vessels and reducing the flow of blood to your limb even further.


2) The second and more important aspect to the application of ice is the damage done to the myelin sheath (fatty tissue insulating the large nerve fibers) . The best explanation I have seen written on it was done by Dr Hooshmand many years ago;






"As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin.
As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice.

This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP).

The end result is aggravation of the RSD and SIP resulting in failure of nerve blocks and then the patient is told, "You do not have RSD anymore because the nerve block did not help you and the phentolamine test proved that you do not have SMP or RSD".

In most RSD patients ice makes the condition worse and can cause denial of diagnosis and treatment for the patient."

[tink1976]

Wow.. Thanks for the info. Any suggestion as to when I start PT for my broken leg and knee???  Any alternitive treatment for swelling as I now I will swell up when I start PT again for the broken leg and being non weight barrin for 3 months?? They last thing I wanna do is have the RSD flare up real bad while Im learning to walk and getting these muscles that have atrophy in them strong again. I feel like either way something is going to hinder progression with PT. Any advice would be helpful as I know ice will hurt the RSD and Ive been through so much.. I dont wanna flare anything up and add to the pain. Thanks in advance