The same thing happens to me and I have never been one to sweat a lot, but with RSD, I get drenched and then have the the chills. My blood work is fine and it's just a part of RSD for me.

Dear Bernclay2 and Friends,
Wow, I am sooooo glad to hear that others have the severe sweats and then 3 minutes later have severe chills so bad and can't get warm for hours!!! You guys are the best. I have been told "Well, you are going through Menopause now." These docs will have any excuse except for the real one that it is indeed caused from the RSD. Thank you all so much for sharing cause I thought I was losing my mind at times (or whatever little is left haha).
Take care,
kathy d

Love, love, love this thread. So happy to see this. I mean, so very sad to see everyone else go through this too.

Personally I have always called these "SHUT DOWNS" for me. As it feels, looks and hears like my system is literally shutting down with the shakes, a high fever, massive headache, increased or decreased BP, saturate clothing from swetting, thirst, then nausea, throwing up and a worse h/a. I used to go to the ER when it became uncontrollable for morphine. Then told by my Neuro/Pain Management doc that I was rewarding my system. But, thats all I knew to control the sx's.

So, if I kinda know what is going to trigger the beast & or the sx's start to rise:
1. I drink tons of cool water to keep my system regulated
2. Sitz baths/showers (thats a given when I take a shower now-a-days, always end in cool from the tip top of your head down to your toes)
3. take a short acting opiod immediately
4. Move, by means of the stationary bike or visulizng I am riding
5. Then sleep it off for days
6. Then start all over getting strong and healthy again

I have deducted there are a handful of things that bring it on. After a decade you start paying attention and using precautions to minimize the SHUT DOWNS or get them before they get you. And I'm still learning THANKS to you~all for sharing, understanding Im not alone to finding a resolve or near one.

Thank you all for your replies. It’s a comfort to know I am not alone in this, and I am also very sorry that others experience these symptoms.

I want to say thank you to Lit Love and Finz for posting the helpful CRPS links. I very much appreciate the help and effort.

For those who are looking for ways to handle the sweats and chills. Like others here, I have been dealing with them almost daily for about 10 years and have come up with a few ways to make it less horrible. It is definitely true that if you can try to stay dry the chills are less severe, not gone, but less severe.

I sleep naked wrapped in large bath towels. That is a layer on the bed, a layer under my head, and a double layer used as blankets. I do this because trying to sleep in clothes or sheets was impossible since they would always be completely soaked. The towels help absorb the sweat until they eventually get saturated.

I keep a terry cloth bathrobe near me at all times. When the sweats and chills hit, I get out of whatever I am wearing and put on the bathrobe. When the bathrobe gets saturated I flip it inside out. If the sweats are not too severe I can saturate one side while the other side is airing out, and I just keep flipping it over and over.

When I want to wear clothes, sweat pants and a sweatshirt are the best choice. They saturate faster than a terrycloth bathrobe but a lot slower than other clothing. I keep 3 or 4 sets handy, so when I saturate one, I change to the next, and I just keep rotating them over and over. This way when I sweat through pair 4, pair 1 is aired out and dry.

When I have to leave the shelter of my home (usually to see a doctor), I always bring a bag with extra clothes in it, especially extra shirts and socks. This way I can change when my clothes get saturated. If I know I will be out a while I will bring several changes of clothes, and I will often sweat through them all.

I will sometimes take an immediate release Opioid when the sweats and chills are very bad. It’s not my first choice since I try to stay within my Opioid limits, but they are available if I am going out of my mind with the sweats and chills and elevated pain.

There is one last thing that I have found very helpful, though it may sound strange, and that is exercise. When I am well enough, and the pain is not out of control, I exercise by walking on a treadmill. I have found over time, that if I am able to walk on the treadmill 2 or 3 times in a week, my overall sweats and chills are not as bad. When I am actually on the treadmill it invariably sets off a severe sweats and chills episode, and I have to change clothes while I am exercising or the chills pain is too severe to continue. But during the rest of the week my overall sweats and chills are reduced. I know it may sound strange but it’s the truth.

I hope this may have been helpful to some of you. God Bless You All.
Bernclay-

1. You're welcome!

2. The exercise is helping your sympathetic sytem to normalize, so yes, this makes perfect sense.

3. Do you prefer to be undermedicated? I'm curious how often you're taking IR?

Hi Lit Love. (I am sorry I write such long responses. I think it is because I am isolated every day due to the pain and I hardly ever talk to anyone.)

I don’t know if I would say I prefer to be under-medicated, but it is true I don’t like taking the medication. It is kind of a non issue since my daily CRPS pain is so bad that I would consider it not survivable without some way of bringing it down to controllable levels.

The reason I try to keep the Opiate levels within a low range is this. Like many people with CRPS my pain and symptoms have gotten worse over the last 10+ years. As a result my Opiate levels were periodically raised to compensate for the increased pain. After many years of this I ended up at over 300mg of Oxycontin per day. (I have also done medication trials with about 20 or more other kinds of medications as well as various treatments).

300mg+ per day was not beneficial since, for me anyway, I developed Hyperalgesia as a result and I ended up being in as much pain at high Opiates as I was at the lower doses. So due to Hyperalgesia, and also due to my body adjusting to the Opiates, the high doses don’t help me in the long term.

In the short term higher Opiate doses definitely help control my pain. But after 10+ years I am no longer thinking in terms of dealing with my pain at the moment. Instead I am thinking in terms of what is the best way to handle the CRPS so that in a year or 2 or 3 I may be better off overall. I have already learned the hard way that just raising my Opiates will not help me feel less pain in the long term. This is just my own experience, I am sure it can be different for others with CRPS.

Also, for me, the high Opiate doses caused all kinds of secondary health problems like very poor blood circulation and swollen hands and feet. Also it added to my fatigue and I was not able to function enough to exercise to try to improve my condition. A specialist told me at the time that it was only a matter of time until I developed a blood clot.

There is something else with regard to adjusting to the Opiates over time. If for example I am taking 10mg at 3x per day (just making up a number), and my CRPS pain is still breaking through, then I take a 10mg IR to compensate between doses. This will invariably lead to my taking the IR on a regular basis since my CRPS pain is always bad. Over time this then becomes taking my 10mg at 3x and my 10mg IR at 3x on a regular basis, and the IR has transitioned from being a breakthrough dose to being a regular daily dose. This then results in doubling my daily dose, which in turn is not effective over time due to Hyperalgesia and/or body adjustment. Then eventually my base dose gets increased to compensate for the increased pain, and then the pattern starts all over again. This is how I ended up at 300mg+ per day while still being in as much pain or more as I was at the original low dose (and added health problems).

So for me, and again this is just my own experience over 10+ years, I have found that I am able to better control my CRPS pain in the long term, by allowing myself to remain in pain for the short term, keeping my base Opiates low, and only taking the IR Opiates when the pain is off the scale. There are many doctors that would not agree with this approach.

It may sound crazy, but I have seen positive results by using this approach for the last 3 years. I am not doing it alone, I work very closely with a CRPS specialist (I deliberately went out and found the best CRPS specialist I could find in my area). It is a very, very painful process in the short term (months), but it has definitely produced positive results in the long term (years). Exercise is the key to making the CRPS less debilitating.

I volunteered for this process, it is not for everyone, and it is too painful for the CRPS specialist to force someone to do. I would not have considered it 5 years ago when I still had reasonable results from the Opiates. But I reached a point later where I had already taken the Opiates and other medications to their conclusion, and for me (again this is just my experience), the end result was severe out of control pain and symptoms at very high Opiate doses. I was completely broken down by the CRPS and I was just waiting for a blood clot to kill or paralyze me (or lose a limb).

So, if your still reading and haven’t fallen asleep. To answer your question, no I don’t prefer to be under-medicated, it is just part of my overall CRPS management process.

Bernclay-

So, during the period that the higher opiate levels were still giving you relief, was the sweating issue the same as it is currently?

Have you thought about the morphine pump? Smaller dosages, but more effective?

Mine is a similar story...damaged wrist nerve caused CRPS. Like yourself, the chronic, painful chills are more debilitating than the hand pain. I have recently discovered that small amounts of percocet (2.5 mg) every 3-6 hours make a significant difference. My doctor has no explanation other than that the chills are part of the pain syndrome and percocet is an effective analgesic (though it does nothing for the nerve pain in my hand).
At least it's worth a conversation with your doctor. Good luck.