Rsd?
 

Hi all,

I had meniscus repair surgery on 12/20 of last year. Im going through really bad pain and have been for awhile . Im taking upwards 4 1/2 750 Vicodin a day just to take the edge off. This is a work comp injury so I have to jump through hoops to get the right treatment. My current surgeon hasnt examined me once post injury and said that an injury received to my other knee was nothing and I was fine. So I took my xrays to another surgeon on my own insurance since work comp denied it and she said that I have dislocated my knee and my current dr must not have looked at my xrays. Anywho--she also looked at my left leg (surgical leg) and said it looks like i have RSD and that I should change drs asap. So Im in the process of changing drs, but because its work comp it takes forever!
I thought I would post my pic to show the redness in my knee and the edema that abrubtly cuts off on the side, which ive read is a symptom of rsd.
Here are my symptoms:
Pain, deep aching pain, occasionally burning, but mostly deep throbbing, aching
Pain especially bad when i move my leg or walk
Redness in knee, leg seems a different color than normal leg
toes are red and foot turns purple-even though i dont have much pain in my foot
my pinky toe is curling in and i feel it contracting occasionaly
swelling that doesnt go away
stiff leg, wants to stay in one position
cant walk without pain
insomnia,
forgetfullness
depression

I think thats it, but of course ive been super forgetful lately, maybe the pain meds.
Feel free to take a look at my pic, bad lighting i know, but at least notice the swelling. Im now over 3 months post-op.

I appreciate any input, opinions and suggestions.. I know RSD is a tough diagnosis and it seems most drs ive seen arent even looking for it, especially on work comp.

Thanks all!
Shan

Well, just to get the stuff said, we're of course not doctors here and anything we say is, of course, only our opionion based on what you've said. :-)

So, the swelling,color change,pain and burning are a part of rsd for sure. Have you noticed any temp change to the leg? Is the skin cold or hot? It can be either one and I've known some who it goes from cold to hot and back again.

Work comp is definitely a big pain. I was there in 03, but thankfully settled and haven't had to deal with them anymore. There are many docs who have no clue what it is and, speaking from experience, work comp docs don't want to make that diagnosis because work comp will then begin to get nasty. My one and best piece of advice, be ready to get a lawyer!! In Florida, if work comp denies you even one little thing or doesn't pay you then a lawyer will take your case. In arizona I believe, work comp has to actually close your case on you completely before a lawyer will take you on. It would be worth finding out when lawyers in your state takes cases. I feel your pain and understand how wc does things.

As far as I know, with wc lawyers you need no money up front or anything. They work your case and take their money out of your settlement with wc.

As for you personally, do NOT use ice. It makes the pain worse with rsd and further constricts the blood vessels in the limb which is why we get color changes like that and temp changes to the skin. Your body still thinks it's injured.

Physical Therapy will hopefully be forthcoming if you can get a doc. In the meantime, use the leg, don't baby it. At the same time, you need to take it slow and not overdo anything that would cause even more pain than you have now. I know...it's a hard balance to find. The saying for us RSD'ers is........If you don't use it, you WILL lose it! I'm figuring the contracture of your one toe is due to muscle spasms. I haven't had to deal with contractures so not entirely sure of the why.

If you have any questions, feel free to ask. There is no such thing as a stupid question around here, only smart ones! :D

Hugs,

Karen

Rsd?
 

Oh yes, there is temp changes-forgot to add. Umm, sometimes my knee is cold and then other times its hot and sometimes its in between. It changes often. My foot does stay ice cold all the time, but my knee changes up. I recently got a work comp attorney, right after going to another dr on my own insurance and her "off the record" diagnosis of RSD. Now I just have to see if the work comp dr gets it tomorrow. Of course I hope to god it could be something else, but after hearing it from one dr and matching up my symptoms, it just makes sense. Therefore, I want to get this thing treated now, not 5 months from now in Work Comp time. But we will see, hopefully this physical medicine dr can give me some answers tomrrow.
I have been trying to keep up with my home exercises after work comp denied any more therapy for my leg-Agh they are crazy! I posted a pic in hopes that someone could see something that was something they had, as in a symptom, so that I would feel less crazy.

Thanks so much for your support, I will keep you updated!
Shannon

www.rsds.org

Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome characterized by:

• severe burning pain
• pathological changes in bone and skin
• excessive sweating
• tissue swelling
• extreme sensitivity to touch

Symptoms include:

• persistent moderate-to-severe pain,
• swelling,
• abnormal skin color changes,
• skin temperature changes,
• sweating,
• limited range of movement,
• movement disorders.

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 1.1°C 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 1.1°C 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.

First and foremost i am so sry for what u r going thru dear! i can tell you that what your knee looks like is what my whole left leg and hip looks like. And what Galena said is all i wood say 2 she took all the owrds rite oit of my mouth after i read your story i mean i didnt have work comp but i have had plenty of ppl in my life that have. I really hope you keep posting love 2 hear bout where this goes and how u r doing. I wish u all the luck there is and lots of pain free days!

Thank you all so much for your words of wisdom and support. I saw the physical medicine dr today and she said she wasnt sure if it was rsd because i dont have the barely touch pain, or pain when she barely blew on my leg. But Ive got the bad pain, especially over my incision site and below it. My foot turned a deep red while i was in there and she seemed torn over rsd and leaned more towards sapheanous sp? nerve injury from surgery. After reading everything about rsd and the swelling that stops abrubtly, im pretty sure rsd is the culprit, but of course im no dr, so who knows. She did prescribe me lyrica and she is looking to get me an mri and a tens unit for the pain.
Can rsd be diagnosed if you dont have the hypersensitivity to clothing or air blowing on your skin? I have the pain when she touched, moved, and examined, but she was unsure about the rsd..
well, at least with the nerve pain meds I know i am on the right track. .. Even if it turns out i get the dx rsd a little later than expected.

Any thoughts?
Thanks much
Shannon

sensitivity
 

you do not have to have ALL the symptoms of RSD to have it.

I have been diagnosed with RSD by many docs, including at the Cleveland Clinic.

I do not have sensitivity to wind, or light touch. I can wear **most** clothing. But let someone pat me on the arm or hug me, and I am miserable. Especially if I don't see it coming - such as someone coming up behind me and touching me.

I also do not have the sensation of sunburn, or what I would call burning pain.

I am sensitive to cold though. I can't hold a cold soda in the hand on the affected side. If I get chilled, my pain skyrockets. I have many other symptoms of it - skin shiny and red, fast growing ridged nails, hair changes on affected limbs, swelling, joint stiffness (my shoulder has been mostly frozen for close to 3 years now) EXTREME pain, lots of muscle spasms, temperature changes, etc etc

This lack of sensitivity kept me from being diagnosed when RSD first hit my foot in 2001. Now, it's in my arm, shoulder etc. and I have gone to Dr.'s who knew more about RSD and recognized it as RSD.

They tell me I may develop the sensitivity at any time.

I am hoping you do not have RSD.

Thanks, from what Ive read you dont always have all the symptoms present. When i barely touch the area it hurts, but because my incision, or affected area, is on the side of my leg I am able to handle clothing-well except jeans. I have this weird sweliing thats right above my knee (in pic) that is hard and stops at a line and no one can tell me why it doesnt go away. My knee is shiny and a different color. My foot changes color, even in the drs office. At least she thinks its some nerve pain and it sounds like the treatment would be the same for both. I started the lyrica last night with my hydrocodine and for about 30 mins the pain was actually better!!! It wasnt gone, but i would say about 75% better and then it kinda wore off a bit. I was excited, it seems like it worked. I will take it again tonight and then slowly up the dose this weekend when I have time to deal with the side effects.. When i told the dr about the pain and that my foot turns colors, (it did in her office), she was a bit baffled, Im not certian that is something that happens with a normal nerve injury. Either way, hopefully im on the right track.

Shannon

I have RSD in both feet, it came on in both at the same time altho the left foot is the worst & it started in 2003 but not DX'ed until 2004.

And also after some types of treatments such as Stellate Ganglion Nerve Blocks whether SGB's or LSB's depending on what extremities are affected, the symptoms can change. I stopped getting the sensitivity from say wind on my skin altho cloth brushing me drove me nuts. But now 4 to 5 yrs down the road & after many nerve blocks I can now wear socks, altho they have to be chenille. I can't wear any other type of cloth on my feet. I can also stand to wear slippers & shoes now also. I can stand to have blankets touch/brush my feet now too. I also no longer get the shiney swollen look. They still will show bright red when on fire so to speak. They do not look blue to purple now either. So over time you might loose some symptoms while getting new ones.

My 2 cents for what it is worth *LOL*
DebbyV

Debby,

Hi, thanks for the kind words. Especially after reading everyone's stories, Im 99% sure thats what is going on with me. But because the new dr does have me on the lyrica, I feel like its the right track, even though it might not be for a dx of rsd. So far Ive had one dr tell me i have it and one tell me shes not so sure. Hopefully they will figure it out in time to help keep it from progressing. Occasionally I get the hypersensitivity to wind or clothing, but very rarely. Mostly just when i barely touch the area or rub against it. I have been noticing a new symptom-Ive been getting little electrical shocks of pain down my leg.. Sometimes it will burn real bad, but go away real quick or it will be a cool burning, like i rubbed icy hot on my leg. The deep throbbing pain is always there and it almost feels like something is pulling inside my skin, thats the only way to describe it.
Anywho-I appreciate your support, I can tell its going to be a tough road.

Shannon