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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   My CRPS was like... (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/222581-crps.html)

Always_Believe 07-06-2015 10:17 AM

My CRPS was like...
 
A kid with an upset stomach at home & totally fine at the doctor...

The swelling, shiny skin, discolorations...all miraculously gone when at the doctor. After a car ride to my parents on the 4th & a trip to fireworks on the 5th and it's swollen, shiny, mottled and purple. Whoda thunk?

LIT LOVE 07-07-2015 05:05 AM

Those symptoms come and go for many of us. If your doctor has not seen you at your worst, you can either make an appointment to go in the same day just so he can make a quick note or you can take pics and show him. At the point that your doc is confident of the diagnosis, it doesn't really matter.

goblue1998 07-07-2015 11:48 AM

I have begun taking pictures of my foot's reactions (post surgery for 6 months after cortisone injections), doctors find this helpful as I still don't have an official diagnosis but am leaning towards mild case of CRPS, going for bone scan on Friday.

RSD ME 07-07-2015 01:10 PM

hi always. i think pictures are good to take too because some rsd symptoms come and go. it is strange how they sometimes seems to go when its time for a follow up with the doctor but it does happen sometimes.

GreyStreet 07-07-2015 09:37 PM

I had a doctor say I don't have RSD because in the ten minutes he spent with me, my arm wasn't "discolored enough". It was discolored, purple/blue, blotchy...but not enough. WTF does that even mean?

For some reason, my arm/hand get more discolored as the day wears on. The later the day, the more discoloration. The cooler the weather, the more discoloration. The more discolored it gets, the colder my arm feels.

Does that happen with you too?

Always_Believe 07-07-2015 10:56 PM

Quote:

Originally Posted by GreyStreet (Post 1153437)
I had a doctor say I don't have RSD because in the ten minutes he spent with me, my arm wasn't "discolored enough". It was discolored, purple/blue, blotchy...but not enough. WTF does that even mean?

For some reason, my arm/hand get more discolored as the day wears on. The later the day, the more discoloration. The cooler the weather, the more discoloration. The more discolored it gets, the colder my arm feels.

Does that happen with you too?

OMG! The new PM I saw last week said I didn't have CRPS because I could wear a sock and shoe. Seriously? My friggin leg swells for no reason (to the point of 3-4+ pitting), mottles and is 1-5 degrees colder than my other foot/leg, but because I can wear a sock I don't have it???

Yes, as the day goes on, no matter what activity I am doing (or not doing) my leg/foot swells. Sometimes it's as simple as a deeper imprint of my shoe, but it's there.

Thanks everyone for the pic suggestions. I took pictures of my knee all the time after the fracture because it never looked 'right' to me. I have only taken a few pics of my leg/foot because the pictures have never done justice to the real thing.

BioBased 07-08-2015 08:26 AM

Yes, it so frustrating when this happens, so it is a good idea to take photographs so you have visible proof. In the winter my right leg and foot were red most of the time, but now that the weather is warm, the purply red only appears when I walk, so if I was seen sitting my ankle would be swollen, but my foot and leg might not be red.

There are lots of misperceptions about CRPS. In March my presentation was casebook. No one could touch my foot. Now there is less pain, but putting certain socks on kills me and wearing shoes is torture. I also had laser hair removal years ago, so excessive hair growth as another symptom isn't possible.

The patchy osteoporosis in my foot and ankle on a May X-ray when it wasn't there in the October xray confirmed the diagnosis.

Always_Believe 07-08-2015 08:36 AM

Quote:

Originally Posted by BioBased (Post 1153513)

There are lots of misperceptions about CRPS. In March my presentation was casebook. No one could touch my foot. Now there is less pain, but putting certain socks on kills me and wearing shoes is torture. I also had laser hair removal years ago, so excessive hair growth as another symptom isn't possible.

The patchy osteoporosis in my foot and ankle on a May X-ray when it wasn't there in the October xray confirmed the diagnosis.

I should specify that the 'shoes' I wear (when I wear them) are actually soled slippers.

RSD ME 07-08-2015 09:22 AM

rsd symptoms can come and go and change each day. just because symptoms aren't always there doesn't mean it's not rsd. and rsd can spread to other parts of the body without having all the symptom that you initially had. some drs think that if you don't have all the symptoms all the time that its the rsd is going away or is not spreading. that is not true but unfortunately some drs don't know this because they don't educate themselves enough on this disease. you just have to learn to trust you instincts and listen to your body. you know better then anyone what is normal and what is due to rsd. and finding a good pm dr and neurologist that know rsd helps also. soft hugs to all.

Always_Believe 07-08-2015 09:27 AM

Quote:

Originally Posted by RSD ME (Post 1153526)
rsd symptoms can come and go and change each day. just because symptoms aren't always there doesn't mean it's not rsd. and rsd can spread to other parts of the body without having all the symptom that you initially had. some drs think that if you don't have all the symptoms all the time that its the rsd is going away or is not spreading. that is not true but unfortunately some drs don't know this because they don't educate themselves enough on this disease. you just have to learn to trust you instincts and listen to your body. you know better then anyone what is normal and what is due to rsd. and finding a good pm dr and neurologist that know rsd helps also. soft hugs to all.

I am still learning the new me in this process. I am finding that I only truly recognize a flare when it's over, not before I have pushed myself too far or most times even when I'm in it. I am trying to learn what my triggers are. So far it only seems I flare after I have done too much. My problem is that 'too much' is different every day. Baby hobbles.


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