[Luthier]

OK, so I was diagnosed with RSD 5 years ago...ish. I've done my fair share of research on the subject since then. I'm just now however am starting to think that I may not have or it at least I might have something else.

This is what I need to know. IF someone has stage 3 RSD and has lost or is starting to lose motor function/control of the limb that is infected is the redness and the shiny skin ALWAYS a constant of that stage and more so if the shiny skin and redness AREN'T present is it even possible that it could be RSD??

Also; Does RSD always spread or can it stay in a centralized location?

[Littlepaw]

Hi Luthier,

My understanding is that the stages are not being adhered to so strongly anymore since there is such variation in cases. Not everyone has all the symptoms and even if they do they don't have them all the time as the disease changes.

Spread does not always occur from what I have read.

If you are questioning your diagnosis and the motor control loss is a new feature I think it fair to get looked at. We owe to it ourselves to follow through on new symptoms before always contributing them to CRPS. You don't want to miss something. Did you ever have an NCS or EMG?

How is your pain these days? Could the muscle loss be from disuse or guarding?

I hope you find clarity and relief soon,

[Neurochic]

Littlepaw is right, the whole concept of stages in CRPS is an outdated concept that has been abandoned. I've had CRPS for more than 8 years and it was discredited as a concept several years before I developed it. Its been medically demonstrated a number of times that the stages don't exist. The only distinction made nowadays is between acute and chronic CRPS - that has nothing to do with symptoms or changes and is purely defined by reference to the time that has passed since diagnosis or onset.

People have different signs and symptoms at different times and everyone's progression is different. Currently, the key requirement for a CRPS diagnosis is to meet the Budapest Criteria - if you don't meet the criteria, you don't have it. That particular diagnostic tool takes account of the inherent changes in signs and symptoms over time.

I use any reference to 'stages' as one of my personal tests of how good and/or up-to-date a doctor or other medical professional's knowledge of the condition really is. Any doctor, physio or 'other' who mentions stages is massively out of date and clearly doesn't actually know anything relevant about the condition. Nobody professing to be an expert in the condition should be referring to stages. In fact, nobody in the healthcare sector professing to have any knowledge of the condition should be referring to stages or suggesting they are still considered to be relevant.

CRPS doesn't spread to other limbs in everyone. Depending on whose evidence you accept, the majority of the experts' opinions are that it spreads in only a minority of cases. Its very easy to forget that the people posting on this forum are a very small subset of the CRPS population who are almost inevitably the people with more refractive, more complex conditions. The people with relatively minor CRPS symptoms and/or those who achieve remission are generally out there just getting on with their virtually normal lives rather than seeking information from this kind of online support community.

[RSD ME]

hi luthier. i have had rsd for almost five years too. from what i have read and experienced, symptoms can come and go but the pain is always there. and rsd can spread, stay localized or even go into remission and come back again at a later date. but when you have rsd you know it because of the specific electrical like, burning pain it causes and the affects it can have on ones body physically. i hope you don't have rsd but if you do i hope you can find a dr who can manage your pain for you. soft hugs my friend.

[Russell]

Hi Luthier,
Everyone in here is right in so many ways.
I figured there were more of monster sufferers out there than in here. Some folks just keep it all in or have not so bad cases like Neurochic says.
I guess because cases can vary so the thing to do is seek out the best Rx help and advice possible. Combined symptoms from other problems don't help.
I myself don't know if I am experiencing a slight remission or just used to being this way.
I better quit before I go off on a rant....
Be well everyone....

[Luthier]

OK well that makes a whole lot more sense to me. Because some days are better than others mind you, as I'm sure good days and bad fall into the same boat with a lot of us on this forum.

My pain depends on how much I've used to the leg that day. and the motor control goes along with that. less use = more control as more use = less control. I have found that for myself at least that overall more use is better than less use. It's not like I purposely over use my leg to the point that it shuts down but I just don't let my pain get in the way of my activities for the day. And when the leg does shut down it's not because it hurts to much to move it. It just won't move anymore. The loss of motor control is more frustrating to me than the pain. I can lock my knee and still walk but the ankle doesn't move anymore and the calf muscle is super swollen.

I had an SCS implanted about a year and a half ago. It works OK. Out of the four programs to choose from on the remote I only use two of them and they're both set to 100%. And from time to time I'll smoke a joint. Seems to work out for me.

[Littlepaw]

Luthier,

If your loss of motor function is following a lot use and is accompanied by a lot of swelling my inclination is to think nerves have pressure on them and aren't as responsive. It doesn't take a lot of pressure to impact nerve impulses.

If you don't already use any light compression with activity it could be worth a try to avert some of the swelling. I find the socks uncomfortable for my situation so sometimes use athletic calf sleeves. I prefer the Zensah, as they are super soft and not too tight.

[-Spike-]

Originally Posted by Luthier

OK well that makes a whole lot more sense to me. Because some days are better than others mind you, as I'm sure good days and bad fall into the same boat with a lot of us on this forum.

My pain depends on how much I've used to the leg that day. and the motor control goes along with that. less use = more control as more use = less control. I have found that for myself at least that overall more use is better than less use. It's not like I purposely over use my leg to the point that it shuts down but I just don't let my pain get in the way of my activities for the day. And when the leg does shut down it's not because it hurts to much to move it. It just won't move anymore. The loss of motor control is more frustrating to me than the pain. I can lock my knee and still walk but the ankle doesn't move anymore and the calf muscle is super swollen.

I had an SCS implanted about a year and a half ago. It works OK. Out of the four programs to choose from on the remote I only use two of them and they're both set to 100%. And from time to time I'll smoke a joint. Seems to work out for me.

I'm curious. In your case does Stress contribute to your increased pain and having to shut down?


-Spike-

[Luthier]

Originally Posted by Littlepaw

Luthier,

If your loss of motor function is following a lot use and is accompanied by a lot of swelling my inclination is to think nerves have pressure on them and aren't as responsive. It doesn't take a lot of pressure to impact nerve impulses.

If you don't already use any light compression with activity it could be worth a try to avert some of the swelling. I find the socks uncomfortable for my situation so sometimes use athletic calf sleeves. I prefer the Zensah, as they are super soft and not too tight.

Well I'm not really using the leg that much, but it still shuts down. Like 4 to 6 blocks would be about the average before it decides not to work anymore.

I'll look into those socks, I have a good feeling about them. I'm just hoping that they have them in my size. I sent them a message to make sure but I wear a double wide 14 from Red Wing. But like I said I'm positive about it, I'm probably not the first big dude to order socks from them.

To Spike:

Sometimes stress can be a factor. It's surely not a positive. I will say that although I have had the leg shut down from mental stress a few times, but it definitely shuts down more to actual physical stress.

I've also discovered that the overall feeling of my leg is based on what I eat or consume that day. For instance if I eat healthy or at least try to eat healthy I'll have a better day the next day than I would if I ate a pizza and drank a lot of alcohol.

[BioBased]

Luthier,

Like you I can not over do it or I will pay for it fairly quickly. I wear the compression stockings, but hate them-wearing them is like being strangled. Before CRPS I appreciated the support, but after it, any constricting garment on any part of my body drives me nuts.

The other day I worked out on my inmotion elliptical, using a walker for support, for about 5 minutes. Within a few hours I could barely move. I have noticed that I walk best in the morning, but as the day progresses my gait deteriorates.

In regards to swelling, since I used the Bowen Technique to draw off excess fluid and I started taking LDN I have had few swelling issues. But I am also not doing much walking or standing.