Originally Posted by catra121

For me...it is all the time non stop no second of total relief...that's MY RSD...other may be different. There's no moment when I am not in pain and I would say most days at my best I am at a 5-6 on the pain scale and most days that gets to a 7-8 by the end of the day. Bad days and flares reach that 9-10 level. This is a significant improvement over where I was two years ago...and is the best I have been since I got RSD almost 4 years ago.

The pain itself for me doesn't come from any particular movement but can sometimes get worse with certain things (like holding things or full weight bearing on my left ankle)...but the pain is always there.

I also have three very distinct types of pain that are caused by my RSD.

1. The all the time every second of every day pain is an intense burning pain. I usually describe this as a feeling like my bones are made of hot pokers and the heat radiates OUT from them.

2. With sensitivity to touch and temperature...when things touch me that is more like a hot poker or blow torch being dragged along the outside of my skin and the burning pain being on the outside like I am physically being burned (as opposed to the radiating OUT like the regular burning...if that makes any sort of sense). Sometimes if the thing causing the pain is in a small area (say...caused by a rain drop hitting me as opposed to a cold breeze which covers a larger area) then I describe it as feeling like I was shot or stabbed with a hot poker.

3. There is this intense bone crushing pain that typically comes with flares. This I can only describe as what I would imagine it would feel like if you put your bones in a vice and squeezed until they were completely crushed. This is by far the most severe pain but it doesn't come as often as it used too...only with flares.

Some people describe the burning sensations differently...we all have our own way of thinking about it. For me...these are the three very distinct kinds of pain some of which are triggered by very specific things. It took me a long time of living with this sort of pain all the time to really be able to clearly define the different types of pain and to know what things trigger what sorts of pain. In the beginning I will be honest that it was just so much pain all the time that I could not sort out the differences because all I knew was it was PAIN and it was BAD. The longer I have had RSD...the more I have grown accustomed to the monster and learned to cope with it. Many times it's a balancing act between what provides what amount of relief vs pain and weighing the benefits over the negatives.

Other than movement are there certain things that trigger your pain?

Originally Posted by catra121

It's POSSIBLE...but I don't think so (but I'm not you so I couldn't be sure).

The temperature changes were one of my very first symptoms...but for me my RSD areas get ICE cold to the touch. It was so bizarre to me in the beginning and I mentioned it to every doc and physical therapist I saw and they all ignored it. We're not talking a slight difference...this was like sticking your hand in the snow if you touched my left leg below the knee (original RSD site was my left ankle). It was one of the major clues for the doc who first diagnosed me but it meant nothing to the others.

After my first block the coldness has mostly been gone. It only comes now with very big flares...but it's not limited to just my leg. I will get it in my arms or upper body...just depends on where the flare is and what caused it.

My RSD areas all have a SLIGHT color difference from my non-RSD areas. It almost looks like I have a slight sunburn where my RSD is (even though many of those areas have not seen sun in years...lol). You probably wouldn't notice but you can tell if you compare with a non-RSD area.

The swelling for me varies. I have inflammation all over...but I haven't had some of the same swelling that many others have had. My fingers swell up like little sausages if I touch something cold. I am very small boned and just generally small...so even when my arm swells to almost twice it's size...you probably wouldn't know unless you compare it to my other one. Same for my ankle.

But in your case (and I hope I am right) I think you have heard what the symptoms are and now are seeing RSD signs everywhere. For me...they didn't all come at once and it started out very localized to where my RSD first began. It spread to my upper body but that was years later. Some people experience spread fast...other slow...and some never at all.

Try not to get too worked up until you get in to see a doctor and can ask them some questions. Write down all the questions you have and take that list with you when you go to the doctor along with a list of your symptoms. If they are any good they will be able to give you some answers and will hopefully have some ideas about what is causing your suffering.