Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 10-15-2009, 02:26 PM #1
WolfLarsen WolfLarsen is offline
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Default Do I have full body RSD now?

Do I have full body RSD now?


My RSD had been until recently confined to my feet. Over the past few days I've had burning or cold sensations all up my legs and in my hips. I have woken up feeling too warm, and found that my face and neck were puffy, warm, slightly reddish, and kinda numb. I've felt occasional, brief burning on my arms and torso. My gut has felt enlarged and sometimes uncomfortably warm, and I've had lots of gas. Last night I was fed a slightly spicy dish with lots of cayenne peppers. I soon felt exaggerated burning sensation from my face (including nose and jaw) down my throat and into my chest. I just read that the chemical in peppers does activate one's heat receptors, and the major aspect of my RSD is that my hot & cold receptors are badly overreactive. (I've eaten much spicier food in the past and nothing like this ever happened!).

Anyway, this is freaking me out.
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Old 10-15-2009, 03:01 PM #2
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Wolf,
You know you may have had a reaction to that particular meal, and/or the rsd is spreading.
I'm not a doctor. But, I'd guess it's both.
Or, that meal, exacerbated the spread, to the point that it was apparent.
Hopefully, it was just the meal!

But, what you're explaining is similar to how it spread with me.
My injury was based in the TOS area, and the RSD started right between my shoulder blades, and went Up (to my head, down my arms) from there. (Felt like someone pulled my spine out of my back). Then, many years later, it just seemed that one day I realized it was down my legs, and in my feet.
It's NOT getting Better!
My feet swell, and are discolored. little red bumps on my legs. Like you, I have swelling in my face too, hands, etc.
This does not mean that it's spreading for you!

That's what RSD does. It gets worse. I feel the worst for the young folks who get this, although, they (the medical community) may come up with some better management techniques... You've really got to stay as active as possible, and Fight Back!
That's what kept my RSD at bay for so long. Now, I'm much more sedentary, and I feel like I'm being overwhelmed, since a second accident a decade ago, that pushed the RSD "'over the top", and caused a tbi.
I've had it since '83.
Every year, this time of year, I swear I just can't take it any longer...

About the pepper and spice. I think my body would revolt if I stopped eating any kind of "Hot" stuff I can get! (It is used as a pain reliever, I think "capsasin" is a cream, based on the hot pepper...? (NOT for rsd).

Just don't forget a cookie or a chocolate now and then..
Sugar and Spice and all things nice.... ya know?

Hope you feel better!

pete
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Old 10-15-2009, 04:09 PM #3
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My full body rsd was dx this way by Dr. S. RSD, rt leg , left, brachial blexius, full body pain. full body rsd. that is exaclty what was written on my chart. I belivie you are full body when you have full body pain, Not necessarly loss of limb use only. Or he just knew what was coming, I have one area left, the right side of my face that is not inflicted with many factors of rsd, sweating, alloydinia, temp under 93, sharp bone pain, lesions etc. One or all of those appear everywhere else on my body at one time or another, not ,Thank God, all at the same time. Hope that helps, cz
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Old 10-15-2009, 08:19 PM #4
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Default Could it be fibro?

When my RSD was spreading I felt burning in the spreading areas like a nasty sunburn and some fire ants thrown in, I also got/get other RSD symptoms in the spread areas, symtoms lie smaller cramping areas as it spread and I felt like little bugs (jigglys) under my skin. As well as some bone ache ect, some days my rt arm would swell and be reddish and ache some days my back and neck would burn ect, RSD symptoms and signs with pain are nessary for a diagnosis as with your origional RSD Dx. Referred pain and fibromialgia is what they tend to look for first as they come hand in hand with RSD.

Everything hurt the same way my origional RSD leg did but not usualy as intensly as the origional RSD site, but the types of pains are the same... the same stabbing jabbing pains ect.. we know the pain.. but it's hard to prove when the signs you can actualy see are sporatic as they are sometimes in spread.

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Sandra
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Old 10-15-2009, 09:06 PM #5
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Dear Wolflarsen,

I know this diagnosis is terrible to come to terms with. It doesn't help when you read some of the terrible circumstances that many of us are in after years of living with this. Please don't let our many stories freak you out, there are many people who don't get RSD spread total body. Also you have to consider that many here who have experienced spread throughout their body are also dealing with multiple complicated health issues as they will tell you.

Ultimately no one here can tell if your rsd is spreading. All we can do is offer you our support and understanding; tell you about our own personal experiences through this journey with RSD.

Please keep in mind we are all totally different, respond differently to the same treatments and medications.

It sound to me like you are still in the early acute phase of your initial diagnosis which is good news in that you do have very good options for treatments.

It might help you if you are able to think of the fact that your body is responding in the fight & flight mode and as such you are most probably very highly sensitive to any type of stimulation whether it is internal or external. This includes things like coffee or caffeine, alcohol, tobacco, refined sugars, spices and Stress too. Your switch or dial has been turned high right now.

I wish I could give you more reassuring words. You sound like someone who is very connected to listening to what your body is telling you. That's a good thing too.

I don't know your circumstances or lifestyle choices. I just can't stress enough how important it is for you to seriously consider all of the factors centered around striving towards a balanced mind & body on a daily basis. I know it's not easy to do but you will do yourself a huge favor if you can eliminate as many of these stimulants as you possibly can.

It might even mean leaving the forum for a while just until you have a better understanding of what your diagnosis means for you, to help keep your stress down. You may not see it initially but each of these things will help you in the long run.

Having RSD is about managing and taming the monster on a daily basis.


My heart goes out to you.

MsL

Last edited by Mslday; 10-15-2009 at 09:57 PM.
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Old 10-15-2009, 09:18 PM #6
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Hello,

I know it's scary when you live with RSD and you think it is starting to spread. You could have had a reaction to the food you ate. Keep in mind everything that happens to our bodies is not our RSD.

The advice in the previous threads is good advice re- read them. Don't get to anxious it only aggrivates the pain. Make an appt.to see your doctor and find out whats going on.

Take care,
Sherrie
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Old 10-15-2009, 10:41 PM #7
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I will get that same feeling if I have a bad dream, I talk to my ex husband or there is an unexpected moment that shocks me. That crazy hot pepper sunburn feeling that goes from my legs all the way to my head. I try not to think about full body yet. I just think that there are so many neuro receptors in our brain get that are just out of whack that they mess with any part of your body, but doesn't mean it is full body yet. My right leg will 'mirror' the outward symptoms of my left affected leg, but without the pain and burning. It will swell and just look awful, but I don't have the pain and burning. My RSD has however,spread to my right arm and I am right handed. We just got a Wii and it really helps to keep my right arm limber. It hurts, but I have to use it because of being right handed. Good luck!

Cindi
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