NeuroTalk Support Groups - Hot all the time!

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NeuroTalk Support Groups (https://www.neurotalk.org/)

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

- - Hot all the time! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/229091-hot-time.html)

NurseKris

11-24-2015 06:19 PM

Quote:

Originally Posted by Neurochic (Post 1185221)

I can see that you have a good system in place for trying to objectively assess any new symptoms or changes in your health. You are absolutely right that my comments are generally aimed at anyone who may find them useful or who may not realise that there are so many possible causes of general symptoms like flushing or feeling hot/cold.

You are spot on in your comments about your own experience of anxiety - medically CRPS doesn't cause anxiety but of course it is possible for someone diagnosed with CRPS to then suffer from anxiety because they are worrying so much about the CRPS diagnosis. Separating out each condition, disease, symptom or problem makes it much easier to objectively assess what is going on and to identify the most likely cause of each.

Perspective and the bigger picture is so important, isn't it? So often in life you can see people jump to 'worst case scenario' conclusions but from the outside its so clear that they have ignored all of the screamingly obvious and infinitely more likely reasons for their symptoms or problems! Then, if other people just agree with them, it perpetuates the error and gives reinforcement to their incorrect conclusion. After that, if anyone (including a doctor) tries to challenge the now entrenched incorrect views it so often results in mega-defensiveness and refusal to accept an alternative view (however correct the alternative is!!). Always challenging or re-assessing your own logic and regularly stepping back to look at the bigger picture is so important.

I am really lucky to have such great support but sometimes it helps to be reminded to slow down, step away and take a deep breath. I am a list maker because for me it is the best way to organize my thoughts and look at it from a different perspective.

Your comment about the "worst case scenario" makes me think of when you forget to call you mom and she thinks you are dead in a ditch somewhere.:)

NurseKris

11-24-2015 06:40 PM

Quote:

Originally Posted by Russell (Post 1185223)

I'm the same way! It was explained to me that we experience temps from screwed up signals from our brains.
After hearing this I have tried soft music to put or try to put my mind in a relaxed state. It works! So try it.
This damn monster wrecks us all. Don't let others, especially loved ones, suffer because of you. As harsh as it may sound realize it's all in your head and dealing with it is the best way.
Sorry if my anger at this monster gets out but I'm so tired of it all. Please be well and forgive my rudeness....

You are not rude at all! I think it's only natural to be angry when your body is at war with itself. My husband is wonderfully supportive and he said he will just put on an extra layer if I need the house cooler.

I have several apps on my iPad that I use to relax. They help me more than I expected. There is one that I use only for bedtime and it actually has helped "train" my brain so when I listen to that one my body knows it's time to sleep. I had to try a few until I could find what works best but now I can't imagine life without them.

The other thing that relaxes me is petting one of my dogs. They are both over 100 lbs but have learned to stay away from my legs, which is pretty interesting since one could never get the command to lay down. My legs are only effected from the knees down so they will lay next to me on the couch and put their heads in my lap as I pet them.

Thank you for the help and support! :hug:

PurpleFoot721

11-25-2015 03:34 PM

It's so interesting that dogs are so in tune to our emotions, thoughts, and when we are hurting, where to stay away from. My little girl, (a pit bull mix who is a lover not a fighter), will do whatever she can to stay clear of my right leg. It only took a couple of times of seeing me in agony when she brushed up against my leg to understand to try to not touch it.

megsmountain

11-26-2015 03:35 AM

Quote:

Originally Posted by NurseKris (Post 1185163)

Pre-CRPS I was a freeze baby all the time, I always needed an extra layer! Now I am hot almost all the time. I turned my heat way down the other day and my husband turned it back up because he was cold. He is never cold, the man wears shorts in the winter time. Even with the heat set at 65 I was still sweating and shedding any layer I could. I believe it may be related to the CRPS but I wanted to hear what others thought. Thanks!

Hello. I have very exaggerated temperature responses constantly. I think it's the crps, as it didn't happen before that. I am constantly changing clothes on some days and the thermostat !! My hubby is kind and doesn't comment upon these strange occurrences anymore. Sometimes, in a day, I switch from a tshirt to a full fleece, etc, as I go from "hot" to "cold" even when the temp is stable. A lot depends on activity, but sometimes I am just sitting and I am completely "ebbed" out of my clothes, it can be the texture , fabric, weight , where it is touching, all I know is it needs to be changed. I don't want to recommend a particular company on here, but if you have crps in your arms, hands, like I do, I found some super soft, nice fabrics for me (pm me if you want details). I really just believe it's our cns or sympathetic nervous system kind of overreacting compared to "normal" people's response to any stimuli. That's why the rx meds that suppress the sympathetic or CNS response can be very helpful to some :) With the heat, is this related to inflammation as well? Its now thanksgiving, so have a great one!! Take care :grouphug:

megsmountain

11-26-2015 03:49 AM

Quote:

Originally Posted by megsmountain (Post 1185578)

Just an addition, as far as meds, clonidine ( I know tons of side effects for some ) really helps suppress or calm down the CNS, direct experience here, also I've read they offer an extended release form so you don't have bp, other spikes when it wears off. There are a lot of side effects, just like any med, maybe something to try on a trial basis. As far as I know, all generic and pretty inexpensive :) Again Happy. Thanksgiving :)

DejaVu

11-28-2015 06:44 PM

Quote:

Originally Posted by megsmountain (Post 1185579)

It's great you have such a knowledgeable support system. :D

These types of symptoms can be so very uncomfortable.:(

As megs has written, clonidine can be very helpful.
I had found it helpful with these types of symptoms, as well as with the pain.
I am very sensitive to clonidine. I had found out a very small dose can be helpful. I think it is worth a try if these symptoms are bothersome. Some women use clonidine for hot flashes, as well.

I hope you are feeling better as quickly as possible.

:hug:
DejaVu

krmitdfrog

12-12-2015 04:27 PM

Quote:

Originally Posted by NurseKris (Post 1185163)

I am exactly the same way now as you described. It is very frustrating bc no one else understands. Having people tell you to just calm down and you won't be hot...I know they r just trying to help but ya :/ the only room in our house that feels cool to me is back bedroom. I turn on the fan and lay down and its cools me off. It's also relaxing back there because I'm only the one in the room and not having to deal with crying babies/people making messes. I take stuff for anxiety but am not sure its enough. Does this sound like anyone else as well?

BioBased

12-16-2015 12:40 PM

Since CRPS started I began to have "the sweats," both hot and cold. Throughout the summer I was freezing with a heating pad and a heated blanket. I think I mentioned that my sister came to visit me wearing tank tops and carrying a fan. We were a weird sight.

In my case I know it isn't the meds since the cold/hot thing started prior to me taking any. LDN has helped with the pain and color changes, but not much with body temp regulation-maybe in time it will get better. I cannot bear wearing binding clothing, especially a bra! Heavy or bulky clothing makes me antsy.

There is so much more to this disease. I feel like even though I am improving in one area I am falling apart in others.

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