Wow, I am so happy I found this site! I stumbled across this site as I was trying to find a solution to the hot red right side of my face. I had never even heard of RSD but reading the last few threads pretty much summarizes my life for the past 4 years (but maybe earlier... since childhood, if that's possible). The facial flares started about 4 years ago and varied in severity. Went to a derm and he said it was rosacea. I never agreed with the diagnosis because I just don't fit the typical characteristics. But I tried the soap Rx with no relief. Whatever. I just started using makeup and keep foundation close by and touch up. But that's just the tip of the ice berg!!

Recently, I've been extremely stressed. I started noticing my heart beating all over my body. Wrist, neck, eye, left temple (about 3 years ago, my doctor said it was migraines... because the headache lasted for days and will change in intensity at different hours), my feet, all over. I started taking my blood pressure since I have a family history of heart problems. So it's been completely out of wack. My dystolic would be in the low 60s or high 80s - out of norm for my age and body type. And most of my doctor visits, nurse said I was prehypertensive. Figured it was just related to visiting the docs office.

About 2 years ago, I started developing what looked like Raynauds Syndrome. I had painful chilblains on my fingers, and my body temp on my hands was going from blazing red and hot, to ice cold like a zombie. I actually started going BLUE in my hand, which is when my doc said it's Raynaud and common with women... that's pretty much it... The veins in my right hand (most problematic side) would get so constricted, nurses couldn't draw A DROP of blood for a quick cholesterol test. She had to squeeze the hell out of my poor finger .

Ever since I was 10 or so, I always had leg pains. I used to be a ballerina. Figured it was a pulled muscle. From 10 to ~16, i visited a few joint hospitals in the city. Xrays weren't helpful then. I came out weekly positive to Lupus - which according to them isn't uncommon.

Now to the present. My body temperature is completely dis-controlled. The freezing side of my body is what I used to cool off the blazing side. I radiate heat or cold randomly. I figured it was the Raynaud's. But as I continue learning about what RSD is and after reading a couple threads, RSD seems to encompass ALL of my recent ailments! The only difference between my ailments, and what's mostly common with the last few threads, is the pain.

I have a skewed pain threshold. The worst pains I've ever experienced in my life is my leg pains (that I still get, even when doctors said it was growing pains... uhhh, i'm only 5 ft!! ) and my cramps. They are the most debilitating pains I've ever felt. So all other pain gets put on the scale. But I'm constantly in weird pain.Weird skeletal pain. Elbow or arm ache, etc. I don't even treat my migraines, cause migraines ARE NOT worst then my cramps. But I'm almost always achy... which I filed under me being pretty inactive in my life style. But laundry shouldn't hurt your body no matter how inactive you are, right?!

This is longer than expected so I may not get many responses. But for ONCE, I think I found the cause of my issues. I honestly thought I was having heart failure. The heart palpitations started recently, when I quit my job. And since, I woke up gasping for air twice - like my heart had stopped. Today, I almost fainted! I've NEVER fainted or ALMOST fainted in my life. Cold sweats have been ongoing for MONTHS now, but they haven't stopped. I now have insomnia (been awake for over 48 hours... maybe that's y I almost fainted! Maybe I fell asleep!!!). I've been a patient at a sleep clinic for the last 3 years. My last sleep study heart beat showed erratic heart beat (amongst other thing). I had shallow breathing most of the night, but because hypopnea and apnea are measured on an index, I was diagnosed with mild sleep apnea that only require life style changes... if only I lived a unhealthy lifestyle! So not helpful! Sleep clinic just tries to keep my brain asleep at night so it doesn't cause me erratic heart beat, and want me to take stimulants during the day to help with the excessive sleepiness...

Anyways. Thanks everyone for sharing your experiences!

Because of the variety of symptoms you have, I would suggest that you consult a specialist. I go to a pain anesthesiologist. You may need to call around to find someone with experience with crps. I'm not saying you have it but you need answers and that is the place I'd start. Good luck.

Obviously you have lots going on and have been having medical issues for a number of years. I think it's dangerous to self diagnose from the Internet so I would strongly recommend that you seek a medical specialist to review your history and symptoms. No doubt your GP or PCP can arrange an appropriate referral to a specialist who is most likely to be be a pain management physician, a rheumatologist or a a neurologist.

I'm in no place to say whether you do or don't have CRPS but to be honest, from what you have written it doesn't entirely sound as though it quite fits the diagnostic criteria for CRPS. Contrary to much popular belief, there are very specific diagnostic criteria for diagnosing CRPS. There have been revisions and changes to these criteria over the years as research has advanced and changed understanding of the condition. It can be a very difficult condition to diagnose so its important to be referred to a knowledgable specialist. It could be something else entirely so you want to be sure that you get the right diagnosis and then treatment if that is an option.

All of the individual clinical signs and symptoms associated with CRPS are also shared by countless other conditions so it is a bit risky to try and self diagnose. That said if you are diagnosed with the condition, at least you have a label for it and may be able to look at a more coherent package of therapies.

I wish you good luck

I'm glad that you seem to have found how your symptoms are all fitting together, and I'm sorry for all you've had to suffer from. Regardless of whether or not it is RSD, which only a doctor can diagnose, you do seem to have something neurological going on. It's important to get to a doctor as soon as you can so that you can not only get a proper diagnosis, but you can also get started on treatment. You can bring up to your doctor that you feel your symptoms seem to fit with RSD and see what he or she thinks. Best of luck to you!

CURLY TOP:

Curly Top, for some reason I couldn't answer directly to your post. Anyway, hope you get this message. RSD is a disorder of the sympathetic nervous system. It is an autonomic condition. Look up on the internet : sympathetic nerous system, parasympathetic nervous system. vegas nerve, autonomic nervous system. It will explain how those of us with rsd have no control over our body temperature, hot or cold, our heart rate, fast or slow, our blood pressure, high or low. why we pass out from low blood pressue, why we go from hot to cold. etc. It is a very difficult disorder for drs to understand. That's why usually it is a neurologist that is able to diagnose it or some orthopedic drs. as usually we get this disorder after an accident/injury or surgery. If you go on the internet and just type in sympathetic nervous system, parasympathetic nervous sytstem, vegas nerve, autnomic, etc. it will make sense to you. It is a neurlogicial condition. We have high inflammation like diabetes, rheumatoid arthritis etc. I believe it is understood to be a disorder like other autoimmune disorders. Others, please correct me if otherwise. Happy for you to find this site, I have benefited since 2007 and then went thru some personal crisis for 2 years and checked out and this is my first day back. You will find comfort and lots of support here. Happy you found this site. Let us know how you are doing. we care. your friend, loretta