I have been reading previous post about the sweating problems that a lot of Sjogren's patients have but have not seen any recent post on this topic. I may have put it in the wrong thread topic, so if I did, I hope someone will move it to the correct place.
My problem is sweating so badly that it drips from my forehead and head onto my nose and my hair stays soaking wet if I am doing any physical exertion at all. I can't even wear makeup on my forehead and barely wear it on my face because of this terrible sweating problem. If I am trying to get ready to go somewhere (which is not a lot because I don't feel that well and it is very hard for me to function right now), I will be wet by the time I do get ready. Once I sit down and fan by hand or have the car air conditioning blowing on my face until I can get dry, I can stay dry until I start to do anything else that is physically exherting.
What is the deal with this? I take methadone (5 mg) x 3 daily and Lyrica (50 mg) x 3 daily. Provigil (200 mg) x 1 daily, and Klonazepam (0.5 mg), and Zanaflex (4 mg) at night only for sleep but I am not sure if this is causing all of my sweating problems or not. I was doing it before I started on methadone or Lyrica, but it does seem like it might be worse since I started taking these. At any rate, it is about to drive me crazy. I feel like I can't keep clean and fresh feeling for my head being soaking wet with sweat. My body also sweats, but it is not near as bad as my head sweating. I have always had a problem with deoderant not keeping me dry and have always had to wear brands like Mitchum or other ones designed for long lasting dryness. These new clinical strength ones they have designed recently are wonderful for my sweating needs.
Does all of this have to do with my body's attempt to regulate itself from the Sjogren's? I went to an outside event last evening and had to leave after about 40 minutes because the extreme sweating and heat caused me to become nauseous. Does anyone else become nauseous when they overheat with Sjogren's? I try to read and find out as much as I can about Sjogren's, but some answers are best anwered by all of you.
I would love to hear from other Sjogren's sufferers on this problem.
Hi Mompain,
Yes, yes, yes, and yes!
I just hate all the perspiring that I do from my face, head, and neck. I can really identify with your comment about the difficulty with makeup and it's melting away from my face. Even showering and dressing for the day can leave me dripping, so that I may sometimes not even get the opportunity to consider putting makeup on! I have asked my physicians about this, and they haven't given me a really direct answer. However, I have read in other literature about the problems that many Sjoggies have with regulating their body temperatures, and also the autonomic nervous system irregularities that can occur, some of which can result in unusual patterns of sweating.
When I am in direct sunshine for any length of time, I too become quickly uncomfortable and nauseous. It's a different sensation than I usually experience when I get queasy - and very difficult to describe to someone who hasn't experienced it.
This is such a pain. If you figure out a way to deal really effectively with it, share with me!
Hang in there girls. I too had this excessive sweating for the past two summers and winters. This year however, it seems to have normalized. I still sweat (from the neck up) but not the dripping off the hair and face like years past. Maybe my autonomic system has burned itself out :D, I don't know. But what a relief.
I hope you get relief soon. I would still report this to your rheumy and ask if it could be excellerated by any of your meds.
Take care, Pooh
One of my favorite things about this forum is the love and support that I get each time I post a question and receive all the caring and heartfelt responses. Being recently retired, I feel as if I sometimes am all by myself in this. I live in a very small town and wish there were some kind of support group nearby. I have contacted the names of ones here, but have had no luck.
How would I go about trying to get a support group started in my area? I would love to know what I needed to do because I would love to be able to socialize with people who truly understand when I say things, like about this sweating, the joint pain, etc. Of course, I would not want a complaint session group, but a group to encourage, share, and bounce ideas off one another. I think it would also be great to share lady type things, like make-up tips, recipes, good books, etc.
It seems as if I got off track here, but isn't that typical of a Sjogren's brain? At any rate, I love and appreciate the comments. Keep them coming and if I can every help and encourage anyone in any way, please let me know. That is what it is all about!!
I'm there too mompain. I just now got in from just watering a few plants and the sweat is pouring off my forehead. But, lately its happening at night as well. My hair and pillow will get soaked!!! From what I understand its effected out central nervous system and the ability to control our temperature.
You are not alone!
Steve
Sweating, don't do too much of that, now that I am always cold. Don't even use the AC in he car and keep the house at about 80 until my wife comes home. Then I put on a jacket and turn the AC to 75 about 45 minutes before she gets home.
It seems like I am cold most of the time, but can go to extremely over heated in minutes with very little perspiration and then my face and head turn into Niagara Falls. When this happens my face and head feel like acid is coming out of my pours. I think this is something neurological, I couldn't be cold, my temp is normal. Maybe the nerves are sending the wrong signals or maybe being interpreted by the brain in the wrong way.
I too am always cold! I bring a jacket with me everywhere and drink hot tea. Everyone else is drinking iced drinks and wearing as little as possible as they complain about the heat. I find myself going outside periodically to warm by bones in the sun.
I thought maybe it is the Methotextrate? Anyone know if this would cause my symptoms?
Hap
Feeling cold can be a symptom of hypothyroidism or Hashimotos.
Sue
Sue,
Feeling cold can also be from fibromyalgia, thyroid checks out fine. Doctor failed to mention fibro to me until my last visit. Oh well, two years late is better than never.
Hap:
If you are cold all the time and your hair is thinning, I suspect your thyroid levels are not under control (just my humble opinion, I'm not a doctor).
If you are on the synthetic T4 only thyroid replacement drugs, like Synthroid or Levoxyl, it is possible that your liver might not be converting the T4 to T3 and it is the free T3 levels that determine how well you feel, no matter if your TSH level is perfect (I speak from sorry experience and I know that most conventional endocrinologists would disagree with me but a lot of them don't even look at the patient's symptoms just at the numbers on the lab reports. So how come I still felt so rotten on Synthroid, when my TSH level was so wonderful?).
Of course, you may also be taking synthetic T3 (Cytomel) or a synthetic combo (Thyrolar). According to this website (www.stopthethyroidmadness.com), that is a step in the right direction, but they assert that natural dessicated thyroid is still superior. It did work better for me when I found the optimal dose, but that's just my experience.
Regards,
Sue
To start with I would advise anyone with sjogrens to have TSH done plus have the blood work to test for Hashimotos. It can come on so fast and I know that I had it for years despite the fact that only the TSH was done and I was on Synthroid. I think that a lot of the Hashimotos symptoms can really screw us up as they are so similar to the sjogrens. We all may be blaming the sjogrens for a lot of things when some of it can be from the autoimmune thyroid disease.
As far as sweating goes---summer is just the pits. I have sweat a lot all of my adult life, but it has gotten worse. I am also thinking that besides all the autoimmune stuff going on that the aging process can really screw us up also.
I sweat so much it runs out of my head and I wear a sweat band cause it drips in my eyes etc. My sweat is so salty that it really irritates my skin and my eyes. I also have problems with it running down the back of my ears and I get irritated skin behind the ear lobes.
Also, most of my clothes get drenched even when I am sitting around in the air conditioning. I feel like I smell all the time and basically a shower makes me feel fresh WHILE I am in the shower. I apply deodorant on as much skin as possible. My head also itches just terribly from the sweat on my scalp.
I think there is really no cure for this except to pick and choose what social events one wants or needs to attend. It is very embarrassing etc and staying home does get old. I am thankful to live in the midwest where we have 4 seasons. I am happiest when it is about 20-70 degrees with low humidity and some breeze. Good luck to us all. Irish ;D
Hi and thanks for this thread - your question has answered some of mine so thanks!!!!
This is not the best is it!!! I find myself burning up now (only way I can describe it) and after my shower end up so damp again I can't get my clothes on as they stick to me. I know it's not hormonal as I've been on HRT for years and is a different feeling to hot flushes.
As far as make-up I only used mineral powder on my face and this does seem to stay on the best, and take along the absorbent face tissues to use to freshen up with - they only absorb the grease etc., not the make up.
As I'm in the Uk the hot days are very short lived and then I'm back to freezing cold hands and feet - seems I just can't win!!!
Wen x
Hi folks,
The sweating, I sweat at the drop of a dime from head to toe, and it pours off of me (I just love to be wet all the time, right ::)). I do also freeze terribly indoors, so it goes from one extreme to another all within a minute or two - I'm surprised that my body hasn't burned it's self out yet.
My newest symptom is now what appears to be Livedo Reticulitis & Raynaud's Syndrome (started only on my hands/feet & now is both arms and legs and starting on the trunk & thankfully I only see it when I'm cold); when it rains, it pours! ;) Anyone else have this mess? I wonder if there's a connection between the hyper autonomic reaction and the Livedo Reticulitis? Or is my body just having it's own party and I wasn't invited? ;)
Take care -
Patze
I had never heard of the Livedo Reticulitis and looked it up. From what I have read, it is a webbed pattern on the skin. Is that correct or is it something else besides this? My doctor told me that I have the Raynaud's Syndrome but I did not mention it on my SSDI things because I didn't know if I had to have an "official" diagnosis with bloodwork or something like that, or if you diagnose it by looking at the hands and feet. My hands do stay a weird, multi-colored look and turn bright red or purple according to the temp. My feet don't tend to turn purple as much as BRIGHT RED when they get the least bit hot. Is this all the same things that you are talking about?
After reading a lot of the responses that you have sent in, I have decided that our bodies definitely don't have a clue how to regulate themselves. I tried to do a very small job last night and my hair was soaking wet within 2 minutes of starting, but my body was still a little cool. I have to keep the house temp on 70 degrees to not be soaked with sweat all the time, but then certain parts (feet, arms) are cold, so I keep a blanket for that. My poor family just has to dress warmly or cover up!!
It is nice to know that we are not alone. Thanks for sharing and caring.
Hi
I don't have sweats as such, but my feet seem to be either freezing or boiling. I shower rather thane bathe, as I find I get so exhausted in the bath, that all I'm goof for afterwards is sleep. Does anyone else have this?
Kathyx
I once ask my doctor about not sweating in the heat and then having a river pour off my face and head that burned. He told me it was scar tissue in the sweat glands caused by SS.
Just thought I would throw that little tidbit at you. Even if it's not true, it does sound good!
Sorry to hijack - Patze, I have Livedo Reticulitis on both my arms and legs. It can be associated with Autoimmune diseases or you can just be lucky and have it for no good reason LOL. I also believe I have Raynaud's Syndrome because since I've been a teenager I can't hold cold items, even washing and cutting up a chicken from the refrigerator is so painful that I have to run hot water first so I can put my fingers under the water constantly. My Rheumy doesn't think I have Raynaud's because my fingers only turn white - not red and blue. I guess only the patriotic american (red/white/blue) can have Raynaud's Syndrome LOL
I sweat like crazy from my head and my feet - but I also need to wear a wig which makes this even worse. I stay indoors as much as possible where it's cool. Someone invented these pads to wear under a wig to help soak up sweat. Here's a link to it: http://www.wigs.com/product_info.php?products_id=3640#itseasy (http://www.wigs.com/product_info.php?products_id=3640#itseasy) They are called "No Sweat Liner by HEADLINE IT". I've never tried them, but I think the idea is great and maybe some of you might want to use this idea under a sun hat. I wear sandles as much as possible and cool clothes and stay in the shade if I can't be indoors.
Skylar
I don't know about the rest of you, but I am experiencing a very common feeling now as I sit at the computer. It seems like my body goes out of whack and I feel like I am on a high burn and that my body just can't adjust to the surrounding temperature. I feel very agitated right now and I know it is because I am so stressed out by the heat and humidity.
I just went out to close the windows on my porch that has no AC and it is so muggy and hot and it smells like a very over-ripe green lake and we are about 5 miles from the lake. I think the grass is starting to get algae! 8)
This kind of weather is a killer for people like us. Even with the AC I am just miserable. Hope it cools off soon or we are going to have some sick people around here. This is also hard on our lungs also. My BIK and wife are camping in our yard in their camper. They came here the 13th and are from ARizona. They are just dying from the humidity. Irish ;D
Skylar
The white feet you describe and the Raynauds symptoms sound like a condition called Acrocyanosis that MIchael has. It affects his hands and feet. I think I have been developing it over the past year or so, thankfully not in my hands, just my feet.
Kathyx
Hi Skylar, I sure know what you mean about holding something cold! If it's not in Styrofoam, I only pick it up with papertowels now a days - the pain is unreal. The livedo doesn't bother me much other than freezing to death ;), but now the patterning is not going away in some spots - very strange to look at when in full regalia. How long have you had it?
Hi Irish, I know what you mean about feeling that your body goes out of whack, it's such a strange feeling! With me, I can be burning up one minute with the sweat just pouring out; a minute later I'm freezing, and shaking (all of this occurs in the same room with the temperature at a steady 68-72 day-in/day-out). The humidity is outrageous, I know how your guests feel as I've lived in the desert southwest and moved back to the east coast and wow, what a difference. I wish I could move back to the southwest, I do miss the people and the great views (and yes, even the heat :)).
Take care -
Patze
wow. i've been reading this thread and thought that's me. I sweat so bad it just comes off in rivers. I have such a hard time regulating my body temperature. I'm either really hot or really cold. there is no in between. In summer i can feel nauseated and want to vomit and pass out. Its like as someone said i'm burning. my face feels likme it's going to blow off my shoulders. Then other times i'm so cold.
I never thought about this in relation to my sjogren's. It explains so much.
Good thread
Our bodies are strange. For 10 years I had severe Raynauds and was freezing cold all the time. Everybody I interacted with tried to make allowances for me. To go to grandsons' football games, they would bring hand warmers, blankets, thermos of something hot, etc. Well, then suddenly Raynauds stopped, and I began the sweats like you all are talking about. And, with all the associated problems you are mentioning. My husband is baffled at the sudden change. (as if I'm not!) It does make it difficult to share living space with me I know. At one point I required so much heat he could barely tolerate it, and now I require so much cold air, it makes it difficult for him. At any rate, I am trying everything I can think of, and as yet, no improvment. I will continue to look on this site in hopes someone finds an answer. I just can't understand how our bodies can make such changes for no apparent reason. Ask a doctor? They barely give me time to open my mouth, much less to ask
a question about such a perplexing problem. I get more info from here. Thanks for listening.
Dixie
Hi :)
I've never had Reynaud's but used to really feel the cold. (Mind you I was very thin at that time too) Since perimenopause + thyroid disfunction + weight gain, I've gone right the other way and am now terribly heat intolerant. My family find this strange too.
Take care - Scottie :)
Quote from: Epson on July 29, 2008, 10:06:35 AM
Sweating, don't do too much of that, now that I am always cold. Don't even use the AC in he car and keep the house at about 80 until my wife comes home. Then I put on a jacket and turn the AC to 75 about 45 minutes before she gets home.
It seems like I am cold most of the time, but can go to extremely over heated in minutes with very little perspiration and then my face and head turn into Niagara Falls. When this happens my face and head feel like acid is coming out of my pours. I think this is something neurological, I couldn't be cold, my temp is normal. Maybe the nerves are sending the wrong signals or maybe being interpreted by the brain in the wrong way.
I'm on your boat. I'm always cold, except for certain times I am cold, but I'm sweating. It's really annoying because I'm freezing, but my armpits are soaked. ??? Or at night when my top is cold, but my feet are on fire. If our outside temp drops below 68 I'm wearing a jacket or sweatshirt, like today. When it's 85 out, my coworkers are complaining about the heat but it's comfortable for me. My Mom is the same way, she's usually colder than me...But again, she's older too.
I'm still in the HOT stage. I was hoping with the cooler weather it would change but only slightly. I find it interesting that so many of us have this problem but when you look up Sjogrens syptoms on the internet this is never talked about. I also find that the doctors don't seem to have much to say about it either but its one of my biggest complaints.
If anyone has a link to info on this I'd love to see it.
Steve
Wow- finally an explanation for my sweating. I started to heat up months ago, and like many others, I just become drenched. I thought maybe I was starting early menopause (I am 44) but that would be my only symptom! And, the heat and sweating did not correspond to how hot flashes have been described.
It makes sense though that if Sjogren's attacks moisture producing glands, the sweat glands could be affected!
I;;m just the complete opposite,, I stopped sweating months ago,,
You know, this all sounds familiar. Sweating one minute and a little later freezing. Winter is setting in here in Michigan with cold rains and I'm cold. On the other hand, once I get wrapped up and warm, I get too hot and throw off the blanket.
Recently, I have been having the feeling of ice cold water being poured over me. This can be on my shoulders, back or arms and legs. Not necessarily all at the same time.
I do hear some of my "regular" friends and relatives talking about their hots and colds. I think everybody goes through body changes as they get older. I have a bil and sil that she used to always be cold and he used to be hot. Now, they are the opposite. Even temps to all. Lucy
I have hot and hotter!
QuoteI have hot and hotter!
You might try moving to Michigan for an immediate cool-down. Apologies if you live in a cold state. :P Lucy