[AndreadePalma]

I'm looking for a peer description of "hot" and "cold" CRPS.

I've only had one episode of the FLAMES ROARING OFF MY ARM with flames I could see whether my eyes were open or shut - it was so horrible. I've had some other "hot-like" symptoms but most of the time what I feel is a burning cold. Like laying bare skin against corrugated steel in -60F temperature and burning the flesh with cold. Or sticking my arm in a vat of dry ice (which I have never done but I imagine it this is what it feels like).

Would anyone care to tell me what their hot/cold sensations are? What else do you know about the hot/cold experience?

I know one thing I'm learning is that when I feel an excess of hot or cold on either arm for whatever reason, I'm in the danger zone. It goes downhill from there.

"Where am I going and why am I in this handbasket?" <---- My attempt at humor.

[Brambledog]

Good descriptions Andrea...I'd agree with that.

I'll often get a sudden burst of the hot pain, and it's as though I've suddenly got that part right next to one of those big old red hot radiators, and you just want to jerk away and go ouch. Unfortunately of course, we can't move away....

The cold feeling I always liken to submerging the affected limb and it's clothing in iced water for ten minutes and then walking around in a draught without drying it. Painful cold numbness with that sharp scratchy feeling over the skin.

Bram.

[chaos]

I have the cold feelings, not the flames. I also don't get swelling (unless I've really overdone it), but I do get blotchy purple skin. For me it's like when you've been out in the cold way too long, the pain like frostbite is next. My feet can be sweating and they still feel like that (and they'd only sweat because I keep trying to warm them up to combat that feeling). Most of the time they're cold to the touch. So yes, it sounds like our symptoms are similar.

My burning sensation is like my blood vessels have been filled with lighter fluid and this has been set alight. It feels remarkably like there is fire inside my hand/wrist/arm/shoulder. And sometimes just for fun I get this somewhere else. My left foot has been a popular 'holiday spot' for this sensation when it wants to travel.

according to the Dutch there are 2 variations of CRPS type 1. The normal is hot but for 5% of sufferers it's cold and this second one needs to be treated differently.

[birchlake]

Andrea,

How long have you had CRPS? My personal experience with it is that I had "both" cold and hot symptoms for about the first year. After that first year, it was almost exclusively hot (burning, with measurable temp. increase on the skin) symptoms. I've heard of a number of others that have had similar experiences.

This darn condition can morph and change, it certainly has many things that can be similar and common with many, but almost everyone has their own unique story and set of symptoms to deal with. For instance, I am one individual that has never had any "hypersensitivity", which is an extremely common symptom.

Where do you have CRPS and how are you treating it? What meds, have you had any physical therapy, etc.? Do you have a pain management doctor?

BTW, I'm from Minnesota too! I lived for 23 years in New Hope. Now I live in the Melrose area. Welcome to the forum!

[Hana]

Hi Andrea, It was freezing/burning for me in the first 20 years. Now I am burning most of the time with added electrical feelings in my arms and chest. Sometimes I feel like if I could light up the city for hours by my arms alone. Actually that thought helps me. I almost turn it into a prayer to deviate any angry emotion towards my body. It is a long process and we are survivors of the worst... someday that will be appreciated.

Wishing You the Best,

Hana

[zookester]

Originally Posted by AndreadePalma

I'm looking for a peer description of "hot" and "cold" CRPS.

I've only had one episode of the FLAMES ROARING OFF MY ARM with flames I could see whether my eyes were open or shut - it was so horrible. I've had some other "hot-like" symptoms but most of the time what I feel is a burning cold. Like laying bare skin against corrugated steel in -60F temperature and burning the flesh with cold. Or sticking my arm in a vat of dry ice (which I have never done but I imagine it this is what it feels like).

Would anyone care to tell me what their hot/cold sensations are? What else do you know about the hot/cold experience?

I know one thing I'm learning is that when I feel an excess of hot or cold on either arm for whatever reason, I'm in the danger zone. It goes downhill from there.

"Where am I going and why am I in this handbasket?" <---- My attempt at humor.

I'm not sure if you are looking for our unique description of the hot/cold pain experienced as a symptom of CRPS or referring to the diagnostic difference between hot/cold CRPS?

It was confusing to me to understand what my doctor meant by "cold" CRPS and that it had a poorer prognosis. After discussing it further with my providers this is the way I understand 'hot/cold' CRPS as a diagnostic term rather than a symptom. The term hot/cold is often used if diagnosis is made early or when symptoms appear rapidly after say surgery, laceration, gun shot wounds etc., . This term is added when there is a distinct and verifiable temperature difference in the affected limb vs. non affected limb. The reason this term is not always used is because more cases of CRPS are diagnosed way to late in the game. With CRPS I/RSD most often the affected body part is warmer to the touch than the non affected limb but then over time or when CRPS I/RSD becomes chronic that same affected limb will turn cold due to progressive vasoconstriction. In CRPS II/Causalgia the diagnosis is often made much sooner compared with CRPS/RSD due to the immediate pain from nerve injury and an obvious inciting event. In such cases if the nerve injury is severe this will increase the likely hood that vasoconstriction occurs rapidly and thus causes the cold temperature of the skin right away. If upon early diagnosis 1-3 months there is obvious quantifiable temperature differences then this term is more likely to be added to the diagnosis. It is well documented that chronic or long standing CRPS I/RSD will start with a warm red/purplish limb and then change over time to cold pale/bluish limb overtime.

The hot/cold burning often described is a symptom of the pain and does not really have any correlation to the temperature of the skin because the nerve signals are mixed up so the perception of the pain for each of us is unique to how our brain perceives it. Just like with allodynia where something say like a feather or cotton ball should not cause pain to the touch but for many of us this will cause anguish. Some might feel the burning/cold early on in the disease and others might feel it later. Some with have symptoms constantly and others might experience things more intermittently.. that is part of what makes CRPS so difficult to treat.

For me-my limb is ice cold and bluish and the feeling is as if there is no skin on my legs and the wounds were packed with salt.. in addition to that (and other crappy symptoms) It sometimes feels like cold water is running down my legs when obviously there is not. When I bathe the warm water actually feels cold on my CRPS limbs.. my brain has my sensory input backwards which my doctor refers to as 'true allodynia' not sure I understand why he states it like that but whatever.. I know my brain is broken ;/

From the Dutch guidelines Patient version

What is Complex Regional Pain Syndrome type 1?
CRPS-I is a condition that can cause serious problems for patients and practitioners. It
normally occurs following an injury to an arm or leg, and can involve a combination of
symptoms:
- circulation disorders
- signs of inflammation
- signs of oxygen deficit
- structural abnormalities in tissues
- sweating disorders
- nerve disorders
Patients report the following problems: pain, temperature difference, impaired movement,
colour changes, hypersensitivity ('contact pain'), tremor, involuntary movements, muscle
spasms, paralysis, atrophy, swelling and changes in hair and nail growth.
A distinction is drawn between 'warm CRPS-I' and cold CRPS-I. Warm CRPS-I affects
95% of patients. In this form the skin is red and feels hot. Only 5% of patients experience
'cold CRPS-I' from the onset of the condition: the arm/leg feels cold, the skin is blue in
colour and circulation is impaired.

[AndreadePalma]

Originally Posted by birchlake

Andrea,

How long have you had CRPS? My personal experience with it is that I had "both" cold and hot symptoms for about the first year. After that first year, it was almost exclusively hot (burning, with measurable temp. increase on the skin) symptoms. I've heard of a number of others that have had similar experiences.

This darn condition can morph and change, it certainly has many things that can be similar and common with many, but almost everyone has their own unique story and set of symptoms to deal with. For instance, I am one individual that has never had any "hypersensitivity", which is an extremely common symptom.

Where do you have CRPS and how are you treating it? What meds, have you had any physical therapy, etc.? Do you have a pain management doctor?

BTW, I'm from Minnesota too! I lived for 23 years in New Hope. Now I live in the Melrose area. Welcome to the forum!

Thank you for the warm welcome!

The onset for me was in my left hand (thumb strain/sprain) and then swiftly moved up to my elbow. I'm now getting symptoms in my right hand and both feet up to the knees.

I've got therapy 2x week and I've been prescribed Amitripryline but I haven't started taking it yet as she warned me I'll need a full nights sleep. Our second vehicle is being repaired and I have to leave in the middle of each night to pick up my husband while we're a one car family so I'll start the Ami as soon as my midnight driving ends.

Yes, I noticed too that several of the symptoms I find the most worrisome aren't even the ones listed. For example I'm very shaky at times and nearly fall down. My regular doc, who referred me to Park Nicollet's CRPS specialist, ran a couple MRIs of my brain and they don't show signs of MS or whatever else can cause that. We're assuming this is also part of the CRPS. I only had the hypersensitivity for the first month or so but now I find that many things "irritate" my nervous system rather than cause pain. Example, when I thought I had a simple sprain/strain I took warm Epsom salt baths and it helped. Now the water doesn't cause pain, but my right hand starts to twitch and my left leg falls asleep every time (repeatable response). So I think the sensation of the water is irritating me. Paraffin dips hurt at first but don't "irritate" me so I use those instead of soaking in the tub. And the blasted ringing in my ears when things start to ramp up! Oy va voy it's like an ear migraine.

I also had a partial seizure last month. Strange and yet I haven't heard others report this. Maybe other people in this forum have experienced that.