[CRPSsongbird]

Can anyone tell me what you have experienced when your Crps started to spread? Like did it start with slight pains and get worse, did it happen all at once, or come and go then hit all at once? Any advice would be helpful!

[Nanc]

Hey Bird!

When I experienced spread, it was like slight pains in the area and then bam it was there! The pain in the spread areas (for me) was exactly the same as the original affected areas. I had mostly mirror-type spreading...right hand to left, left shoulder to right, right foot to left. Started more than 23 years ago in right side of my face and we think it is now spreading to left side of my face (guess I am lucky that part took so long ). Got it in my left arm from venipuncture injury and then spread down to left leg. Got diagnosed with interstitial cystitis last November, which I understand is common with RSD/CRPS and other chronic pain conditions, and now have RSD "down there". Yep, it is pretty much taking over.

I sure hope you are not experiencing spread! Hope you can get some relief soon!!
Nanc

[CRPSsongbird]

Thanks Nanc

I'm sorry to hear your spread is going "down there" I can;t imagine that horror. Of course it's bad to have it at all or any spreading but that...ugh I'm sorry! Thank you fort the information it is helpful!

This is a question for you or any other Crps'rs reading this. So I explained before how it started to effect my legs. I woke this morning with severe pain in my legs, but it seemed top be targeting my knees and ankles but more severely the muscles in my legs. From the bottom of my feet to the front and back my calves/shins and the back half of my thighs. I also feel it in like my kidney area? There is the standard deep aching and burning and numbness of pins and needles in my feet. Not too much discoloration and a bit of edema. But it almost feels like my muscles are locking up. and it hurts like hell trying to stretch or straighten them out. When I try to walk or straighten my legs out it causes the pain to flare up intensely, as in I was yelling like I was giving birth from the pain! ugh

Does this sound like a "normal" thing, it does resemble the pain of Crps but not exactly like my arm, thats why I was asking. Does it sound familiar? I have an appointment today so will be able to ask my doctor, I was just wondering if it sounds like something other than Crps.

[catra121]

For me...the spread was gradual. Mine spread after a lumbar sympathetic block. After the block...my back started to ache and burn...and then it got worse...and then it went up my spine to my neck, and then my shoulders and around the front to my chest and abdomen, and then down my arms, and then to my hands. It was definitely burning RSD pain and flare ups felt the same as in my ankle.

I also experienced spread about a year after that that went up my left leg and ended in my left hip after my nephew accidentally kicked my ankle while rough housing with my boyfriend. It was also definitely the RSD burning.

But as much as it was the same pain...it wasn't the same experience as my initial onset of RSD. Part of that was probably because I was used to the high pain levels...but there were other differences. I didn't have the drastic temperature differences I had when I first got RSD in my ankle. There was inflammation but it presented differently...more like a slight sunburn over all of my RSD spread areas vs. the severe swelling and color differences in my ankle when that first started.

The extreme sensitivity to touch and cold was the same in the spread areas though...

Not sure if any of that info helps...but that's what it was like for me.

[CRPSsongbird]

Definitely helpful!! As mine didn't feel the exact same either. I was holding out hoping that it was something else, but we all know how that goes with Crps right?

I would really appreciate any other spreading symptom accounts from any one else who is willing to share!

[zookester]

I am sorry that you are dealing with possible spread!! It is scary and stressful for sure.

For me the spread has been rapid and obvious. My original nerve injury was in my right hip that caused CRPS symptoms in my right thigh to just below the knee [insane electrical shocks, freezing burn, swelling, rash, tremors, severe sensitivity, deep bone pain, knife like pain etc.,] within months it spread to the entire right leg and then very shortly afterwards the left let & both arms [although arms are not as severe]. The first symptoms of spread were the electrical shocks, tremors and freezing burn - then came the deep bone pain and sharp stabbing pain. Within 18 months it has spread to include all limbs, face, bladder, bowels and recently complete autonomic dysfunction. All this, in spite of very aggressive treatment.

My best advice - keep moving. Even when the pain is so bad I can barely walk, as long as I keep moving I can get through it. When I stop or there is no way for me to distract, the pain becomes unbearable. Even though it hurts to walk, it hurts much more to be stationary whether that is sitting, laying or standing and it makes the stiffness, muscle spasms and burn much, much more difficult to tolerate.

I do hope you and your doctors are able to come up with a regimen that helps you!

[visioniosiv]

Originally Posted by zookester

I am sorry that you are dealing with possible spread!! It is scary and stressful for sure.

For me the spread has been rapid and obvious. My original nerve injury was in my right hip that caused CRPS symptoms in my right thigh to just below the knee [insane electrical shocks, freezing burn, swelling, rash, tremors, severe sensitivity, deep bone pain, knife like pain etc.,] within months it spread to the entire right leg and then very shortly afterwards the left let & both arms [although arms are not as severe]. The first symptoms of spread were the electrical shocks, tremors and freezing burn - then came the deep bone pain and sharp stabbing pain. Within 18 months it has spread to include all limbs, face, bladder, bowels and recently complete autonomic dysfunction. All this, in spite of very aggressive treatment.

My best advice - keep moving. Even when the pain is so bad I can barely walk, as long as I keep moving I can get through it. When I stop or there is no way for me to distract, the pain becomes unbearable. Even though it hurts to walk, it hurts much more to be stationary whether that is sitting, laying or standing and it makes the stiffness, muscle spasms and burn much, much more difficult to tolerate.

I do hope you and your doctors are able to come up with a regimen that helps you!

Tessa I didn't know how rough you've had it. You are unbelievably tough. Thank you for everything you bring here and I am praying for the day when you're pain free.

[zookester]

Originally Posted by visioniosiv

Tessa I didn't know how rough you've had it. You are unbelievably tough. Thank you for everything you bring here and I am praying for the day when you're pain free.

lol.. I don't know about 'tough' .. you should see me cry like a baby!! Thank you for your prayers, it is through that alone, that I make it through each day.

Blessings to you,
Tessa

[ali12]

My RSD started in my left leg and then spread to my right arm after an injury. When it spread I had blurred vision from a side effect of medication and fell and sprained my hand. The RSD spread almost straight away - I started with the intense burning pain, swelling, colour and temperature changes etc. As well as this my hand also went into a fixed fist as I have Dystonia.

The "good" thing if your RSD spreads if you already know what is wrong is that you can try and treat it straight away. Its important to desensitise it if it becomes hypersensitive (stroke with feathers, wear gloves etc) and to keep moving it (once you've checked there is no breaks etc if come from an injury obviously). The quicker you do that, the more chance you have of it getting better or not worsening... but again everyone is different.

I hope you don't have to endure spreading