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 05-22-2015, 12:19 PM #11
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I have another thought.... This reaction may not be due to histamine, but bradykinin instead.

Bradykinin is another biogenic amine that is released by various triggers. Usually physical ones.

It can build up in the body in people using ACE inhibitors for blood pressure. So Kev...if you are using a drug like this, you need to talk to your doctor to get another family of medications for any blood pressure treatments.

Some people have a hereditary genetic error in the metabolism of bradykinin. (This was discovered for me, when I had a huge reaction to Lisinopril for blood pressure). You can swell, turn red, and hurt tremendously. This is tested for with blood tests for Complement #4 and C-inhibitor.

The blow to your leg, is enough to release the bradykinin from cells and the red swollen appearance is typical. People with this problem also react severely to stings and bug bites.

Many doctors are unaware of hereditary angioedema...and so many people go without a diagnosis. This type of angioedema does not respond to antihistamines. That would be a clue that yours might be due to bradykinin.

Here are some links:
http://www.haea.org/patients/what-is-hae/

You can see from some of the photos, that the swelling can look very like some RSD...

I have had my left hand swell up for weeks, following an IV for a test.
Also I typically get mine in the abdomen and that is called GI angioedema. I was hospitalized once for 10 days with an attack in the 1970's....back then all the doctors were stumped, and I narrowly avoided surgery then. (they found twisted intestines though, saying I had those from birth). Sometimes I get it in my throat, but I have never totally closed up there yet.(thank goodness).
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Old 05-22-2015, 04:44 PM #12
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Thanks but I am not on any medication at all due to a neuro-receptor disorder
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Old 05-23-2015, 07:21 PM #13
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Hello Kevscar,

I am so sorry to hear this and to see those pictures. It may sound silly, but have you tried using purified, distilled water to see if it had the same effect? I am just wondering, if there is ANY possibility, that the impurities and additives to most water could be causing this? In other words, is it possible that this is a reaction to the H2O itself, or the chemicals that are present in water?
It may be a long shot, but can you try a purified, distilled bottle of water to see if your legs can tolerate that? Maybe you have already tried this, it is just a suggestion. It would be nice if distilled water was ok for you. Please do let us know. You are not alone.

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Old 05-28-2015, 03:47 AM #14
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Morgan it's an idea and I'll try it trouble is even if it works can't run distilled water through the shower or afford 4800 gallons of it to fill the swimming pool
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Old 05-28-2015, 08:38 AM #15
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Reminder.... one does not have to be taking an ACE drug to have excess bradykinin. It will just happen faster.

People who have problems metabolizing bradykinin away, will always have it....see that link I provided earlier about HAE.

Bradykinin exists in normal amounts in people with C-1 inhibitor actions. It is the body's reaction to physical and chemical trauma
stimuli that releases it. People with defective C-1 inhibitor have long reactions to bradykinin therefore. (this is acquired and/or genetic or both).

The FORCE of the water from a shower is more likely the culprit.
Temperature of the water also a factor. Some people on our PN forum react to Chlorine in pools with pain.
If you can slowly pour lukewarm water on yourself slowly and not get a reaction....I'd look at the force and temperature of the shower itself as a trigger.
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Old 05-28-2015, 11:05 PM #16
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Shower is at lukewarm because I cannot stand anything else. Due to hypersensitivity water does not directly hit any of my CRPS areas, for the leg it is aimed at the thigh and allowed to trickle down
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Old 06-08-2015, 03:00 AM #17
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If you think you have this stop washing the affected area. In 2 weeks the wound healed completely and last Thursday the skin started flake off leaving new skin underneath
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Old 07-10-2015, 05:19 AM #18
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Last year I was searching for something to help me in the shower and with the cold, also with dry skin, I found that plain, liquid lanolin can help. It is sticky and heavy, but it helps.

Sheep shearers have young looking hands from the elements protection lanolin provides. I found that lanolin cut down the intensity of sensations and helped with dry skin. I sometimes would put msm lotion on first , wait until it was absorbed, then put on lanolin, wait a bit, then wrap my foot and leg in plastic wrap. Basically this is occlusion therapy.

Also, I found I could sit in the shower with a large face cloth on my feet, which allowed me to shower at a normal temperature.
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Old 07-10-2015, 06:48 AM #19
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Wow what a slam to a person. I'm sorry. If crps isn't enough why not add to it right? I hate this disease, and even the name. We nicked name crps here to craps. The joys of being a medical mystery....
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Old 07-10-2015, 07:39 AM #20
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i'm so sorry kevacar. i hope that you find some relief from the pain soon.
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