Does CRPS cause severe total body sweats with painful chills?
 

Hello.
I have CRPS (from crushed nerve in arm) for many years. I am trying to find info, or links, or anyone with helpful advice based on real info relating to total body sweats.
I suffer from severe total body sweats with painful chills. I can experience this for hours or days.
I am trying to find out if any CRPS info/doctors/websites explain this as a verified CRPS symptom, and if so, what can be done to relieve it.
As a side note.
I get this total body sweating anytime and regularly. But lately I have noticed that if I am not sweating, and then I eat something, it triggers the sweats that will then continue on (just like when I don't eat and they start on their own). Just to be clear. The sweats happen all the time, not from eating, but lately I have noticed eating triggers it also.
Any useful info would be greatly appreciated. I have had CRPS for over 10 years, but lately I sometimes feel like the sweats and chills are harder to handle than the truck loads of pain I have already endured and figured out how to manage. Thanks again. Good luck to all and God Bless You.

Hi! I am wondering if you have changed or started any new meds? This can be a "fun" side effect from many medicines. Hope some of the others have better ideas for you, but I have to go and take another shower! Lisa

Does CRPS cause severe total sweats with painful chills?
 

CRPS does impact the body's ability to regulate its temperature. The result can be sweating and/or chills.

That said, be sure to review your meds with your doctor to rule out any possible culprits, specifically Cymbalta or meds in that category. Cymbalta is a known cause of this.

If you have ruled out any med as a cause, you may have joined the ranks of those who add the suffering of sweating buckets on top of our pain.

RSD is so much fun!

Yep
 

The med thing was the first thing that came to mind......in particular, like skooz said, Cymbalta caused me a massive amount of sweating and overheating very easily.....Also back when I was on a high dose of Fentanyl Patch, the spikes in pain relief when changing 3 day old patch to a new patch caused severe chills/clammy/sick feeling (withdrawal-like symptoms).....so by going to a much lower dose of the patch, it kept it more evened out and the spikes are no longer happening.
When our hormones are effected, males OR females (example: opioids are a known culprit to deplete hormones), we can get 'hot flashes' and other strange episodes, not necessarily always 'menopausal' in nature....

physically, once I got my thyroid issues straightened out, it helped me to regulate my normal body heat, amongst other functions
Our Thyroid is our body's 'engine throttle'..... I had NO idea how important our thyroid is to our entire adrenal and endocrine system until blood tests revealed hyPOthyroid.......sluggish.....gained weight simply by breathing the air :o, intolerance to heat/cold extremes........

Regarding the dietary eating trigger......in my case the 'bad carbs' (sweets) triggered pain spikes/gluten intolerance issues.....
Maybe if you kept a simple journal of what you ate when you noticed the symptoms kick in.......I noticed on several occasions if I ate a few salty potato chips, It would spark a hot flash type of thing.......iodine reaction....?

Just throwing things out there......our bodies are all different of course....
Getting a glycemic/glucose tolerance test may help in either targeting a culprit or at least aid in the 'process of elimination' and ruling out things like diabetic risk factors, etc.
Probably need a good blood work up to see what your numbers are.....

It takes a frustrating amount of constant detective work......
I hope you can pin down some possible

Wait wait.. the same thing happens to me.. Drenching sweats...toes to my head...any given time.. both eatting and not eatting... and I am glad you brought up the eatting part ..AND the best part..I can say mine is not medicine derived as I can't take any meds for my RSD, bad tummy... I am cold turkey RSD..it may be your meds but I can say it is not in my case..This baby is pure and simple... our friend.. "Richard, Steven, David"..RSD!!!!

Hugz, Kathy:grouphug:

Sweating triggered by eating is called gustatory sweating, and is a symptom of diabetes.

Severe blood sugar ups and downs can cause this.
http://www.thefreelibrary.com/Diabet...ng.-a084306315

It is also a sign of neuropathy. (dysautomnia).

I think a trip to the doctor, for a complete work up is a good idea.

Hello Mrs. D~

I've done that..gotz all blood work and complete work up.. remember..I am was in the medical field...My numbers were beauty-est.. right in range... Dr. says..and I quote..Remember, Kath..you do have RSD!! Oh joy!

Hugz, K:hug:

Hi,
 

I too thought about the meds. Methadone causes me to sweat and if the weather is warm or the house is warm, I get even more uncomfortable from the sweat caused by the meds. Even the Lidocaine patch I wear causes me to sweat. I do believe a lot of meds have this side effect.

Ada

One test doctors do not perform typically unless asked is:

fasting INSULIN.... this can be elevated in insulin resistance and not show abnormal high sugars on GLUCOSE testing.

Elevated, will give blood sugar swings, that provoke sweating.
Sweets and carbs, or large meals, are the worst offenders.

Fasting insulin elevations are "pre-diabetic". Many doctors don't attend to this at all.

If you get a fasting insulin done, do not exercise before the blood is drawn on an overnight fast. This will also elevate the readings.

Some of us at PN (myself included) have this test done yearly.

I've looked at all the potential triggers, and there does not seem to be any pattern that I can figure out. The good news is that at some point you'll start to sleep through it, lol. It does seem that the better my pain is in under control, the less frequently it happens???

I've also found taking a shower can reset my body temp some of the time.

I'm glad to read this. I am having both the insane body sweats and the chills, and recently started Cymbalta. I will speak to my doctor about it.

Edited to add: when you get the chills, does your CRPS area seize up painfully? I just want to cry when that happens to me. I think it's another reason that the ceiling fan aggravates my leg so often. But then again, I get so hot and want the fan on, and the skin on my leg hurts to the point where I don't want pants or a sheet on it.

Also Cymbalta is notorious for causing sweating. All the SSRI's and combo SSRI SNRI's cause sweating. The related drug Strattera also (it is a SNRI).

Some people also sweat after taking NSAIDs including aspirin.

Of course opiates cause sweating, and also they depress the hypothalamic axis and reduce hormone production which results in sweating.

Caffeine will do it too! So there are many causes besides blood sugar swings.

Hi Everyone,

I get the feeling hot and chills often and I am not on Cymbalta. I think my body just can't regulate my temperature. I seem to do this when I'm in a flare. It's drastic hot and cold, but I'm not sweating - like you guys talk about. My husband says that I'm clammy but not temperature hot. I then get the chills. If I thought I was getting them for a typical flu, I would be thinking I have the flu weekly...

I can't seem to find any rhyme or reason to them...

It also depends on the weather outside. If we have drastic changes outside, I have a problem regulating my temperature. In MN, we can have 30 degree swings and in that case I know my body can't handle them and I go into a flare and hot and cold chills...

Of course you could play it safe and get some testing done. I just think for me that it's not related to my blood sugar...

Good Luck...

Ugh.

I'm with ya on the sweating.....I have to wear tank tops year round and I don't need a winter coat even though I live in New England.

Follow up to my original post with more info - thanks to all for trying to help
 

Hi again everyone. Thanks to all for taking the time to respond to my post. This follow up reply is a real attempt to try to determine the cause of my total body sweats/chills and to try to find a way to treat them. I am having a hard time finding any concrete documentation about total body sweats/chills being a direct CRPS symptom and if so , how to treat it. I have heard both doctors and patients (including some who responded here) tell me causally that total body sweats/chills are a symptom of CRPS. But when I look for documentation I am having trouble finding any. If anyone knows of a link or other documentation that specifically refers to total body sweats/chills as a CRPS symptom, please reply with the info. Thanks.

In response to those who were kind enough to try to help with their replies to my original post, here is a little more detail about my condition. I am a guy so the female sweating issues don’t apply. My medications are stable and have been for a while. I see my doctors regularly, and I have my blood checked at least every 6 months. I am not diabetic and have been checked multiple times. The pre diabetic Fasting Insulin Test may be worth a try just to rule it out. I am not on Methadone, Lidocaine, Cymbalta, Strattera, Fentanyl, SSRI or SNRI medications. I take Aspirin (not every day) as needed but get sweats/chills both on and off the Aspirin. I avoid caffeine. I could have a food intolerance or allergy, but I get the sweats/chills all the time eating or not eating.

I definitely have suffered a traumatic Neuropathy leading to CRPS and I am trying to determine if it is the cause of the sweats/chills. I do take Opiates regularly and for many years for the CRPS pain. I see from one of the replies this can cause sweating. I have long wondered if the Opiates are the cause of the sweats/chills, and they very well may be. But over 10+ years I have been on various levels of Opiates from low to high to low again. I would think that if the sweats/chills were a direct result of the Opiates, then I would have more sweats/chills on high doses and less on low doses (maybe). But what I have is a gradual worsening and intensifying sweats/chills that started a few years after the original injury and then worsened till now 10 years later. Thanks again to all those that replied and have tried to help, and God Bless You All.

Honestly Benclay...

I think that it really is not caused by anyone thing..I think when our systems, immune systems are being taxed and for such a long period of time..our systems react any way it can which includes sweating and/or cold...our bodies are surely out of sorts!!

It is the big picture...

Hugz,Kathy:grouphug:

The sweating thing is crazy. It just happens. There is no warning and it seems to happen at the most embarrassing times. I try to make sure that I am well hydrated.

Regarding Opiates, if you begin to go into withdrawl that can cause chills/sweating.

Dr. Hooshmand's website state's "the regulation of body temperature" is one of "three major physiologic roles" of the sympathetic system.

He lists "sensory dysfunction of thermoreceptors" as one of the diagnostic criteria for RSD.

http://www.rsdrx.com/CRPSABSTRACT.htm

Also, this link about thermography is helpful:

http://www.rsdalert.co.uk/treatments/Thermography.htm

might be
 

woke up screaming, drenched in sweat. all the meds were the same. realized it was not a nightmare.. it was pain causing the sweating. so sorry to hear this is happening to others. if u are groggy from sleep meds when u wake from this, be careful, i couldn't find my way out of a small bathroom and banged my head all over and fell. keep a robe next to you so you can change fast and avoid the chill. feel better and drink water.

Just a few links about RSD and sweating :

http://fightingagainstrsd.tripod.com/whatsrsd.html

http://www.davidlnelson.md/RSD.htm

http://www.rsdalert.co.uk/FAQ/ismyexcessingsweating.htm

http://www.rsdhope.org/Showpage.asp?...8&PGCT_ID=2817

http://www.neurologychannel.com/rsd/index.shtml

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.:grouphug:

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

Great thread
 

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 for your replies
 

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- :holysheep:

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- :holysheep:

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?

CRPS & Chronic chills
 

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.