Well here I am on a hot sunny day in England, and feeling wretched !
I had a very busy week and I have now retired to a darkened room feeling
exhausted.I am seeing my specialist on Tuesday so maybe he can help but the general opinion is to pace oneself but this isn't always easy.
Please could you tell me which of the following can be blamed on Sjogren's.
1) Cough especially in the morning.
2) Either being very hot or very cold,often within minutes of each other. Happier if it's cold.
3)Sleep problems aggrivated by the above.
I feel such a moaning Minnie especially as everyone is saying' What lovely weather !! 'I just smile and bite my tongue !
HELP ! :'( :'(
Hi Jane :)
I'm in the north of England and it's not hot here - but I'm quite glad. Since menopause and SjS, I'm not a lover of the heat anymore. I used to be.
1,2 and 3 could all be Sjogren's. I'm afraid they could all be something else as well so note them down and make sure you ask your specialist about them on Tuesday.
I can't remember if you ever said what sort of age you are. The hot/cold bit could be SjS because a lot of us feel as though our thermostats are broken but it could also be perimenopause or menopause with an SjS overlap. My 'heating' system was a lot worse when I was in the full throws of meno - especially overnight. I still get hot flushes but less frequently and the night sweats seem to have abated. The sleep problems used to be horrendous. Nowadays I still find getting to sleep hard and I never sleep right through but I am capable of sleeping intermittently for 12 hours straight, which has its own problems!
You're not a moaning minnie. The sun just really is not our friend and can make us feel quite ill. It's another loss to grieve for. Roll on autumn!! ;)
Take care - Scottie :)
Hi Scottie
I am 64 so well past the menopause ! I suppose it is only sunny and warm here but is hot to me ! I also have...or hopefully had...breast cancer. But an old dear weeping is not a pretty sight ! I am just feeling sorry for myself this weekend and will pull myself together ! Jane
ps My parents came from the N of scotland so I don't have the sunbathing gene anyhow.
I love that expression "Moaning Minnie". Here in the US I would have used the expression of being a "Debbie Downer".
I also get a cough in the morning. Feel kind of mucasy. Its hot here in Northern California as well and I'm not tolerating the heat well either. I also have problems with the sleep because of both. I don't think its menopause since I'm a man.
Steve
Hey there Jane,
I am hot and bothered of London, I Should not really moan though it will rain here soon enough!!! and I am getting loads of washing dry.
I find the heat quite oppressive at times and also retreat to the coolness of the lounge, but then it all changes and I want to sit out and read my book. Is that sjs or just female indecision, I am too tired to decide so I just go with the flow.
I would agree with what the others have said, the sudden temperature changes could be attributed to the sjs, I get those and have to guess whether it is sjs or thyroid, the sjs usually wins though. I also have disturbed sleep patterns, some nights I sleep pretty well for a short time, and others cant seem to get to sleep at all.
I work five days a week in a school and at the moment am also travelling to the hospital every other night straight from work and each afternoon or evening at the weekend to see my brother in law who is in and cooking dinner when I get home, so my day starts about 6.45 and finishes on the couch at about 10 p.m.
They have estimated that he should be there for about 3 months so I know I am in for the long haul and pacing is not always possible.
I don't think there is one person on this site who has not had to let of steam at some point, and considered themselves a Moaning Minnie or Debbie Downer (like that one) so don't add that to your list of worries, after all if you can't talk about it here where can you!!!
Mim
Hi Jane :)
My hubby comes from the north of Scotland and not one of my 4 kids has the sunbathing gene either. They are all as pale as pale. If you are going from freezing to boiling have you actually taken your temperature? You could be running a fever.
Take care - Scottie :)
Hi Jane, and welcome :)
I'm a Yorkshire lass. It's been pretty miserable here today - mild, but with some very heavy showers thrown in. I think I am a little unusual, as I reallyl ike the heat. Having said that, I use hrt, so find I'm not too bothered with hot sweats, and I take amiytrtiptyline at bed-time, so usually sleep very well.
Good luck for Tuesday.
Kathyx
Ditto from me too on the hot and cold thing and also the other stuff! On top of all that my skin stings for hours if I go out in the sun.
Love,
Justifiably, Joyless, Jabbering, Blathering, Jowly, Janna
I am here in south Louisiana , USA. Ditto for me all three. As they say around here " No use in complaining - no one listens anyway! " Hope you are doing better soon.
Hi Jane, I'm in Northumberland, the weather here is nothing to write home about...but whatever the weather is I have experienced hot & coldness for many years now, and I'm truly convinced that it is due to Sjogrens !
The coldness irritates my body, and makes my eyes more irritated than warmth does, but hot sunshine makes me feel awful and I just can't sit in it without shade.. it has disrupted all my social life..
I am so sensitive to cold that I actually feel cool when anyone just walks past me whilst I am sitting... it's so weird that I don't mention it much as I think others would think I'm a half wit, I feel as tho' iv'e a spirit sitting on my shoulder playing games with me...I also have been really down these past few months and cry every day about this intolerable affliction... in sympathy, Dolly.
Jane, I have had Sjogrens for 40+ years and I have had heat intolerance for at least 30 of those years. No matter where I worked I was always asking people if it was hot in the room. I always would get so hot and sweat so bad. I don't like the hot weather and am more comfortable when it is cool.
I also have the stinging sensation on my skin when I have been in the sun. This has been for many years, but it's a lot worse now. I sweat( I get so soaked that it is sweat not perspiration) so badly that sometimes I feel like I have had a shower with my clothes on. Get that hot feeling and sweat and then have the chills. I am way, way past menopause and know that this is sjogrens as I did it when I was young and I am now 65. Just in the past few days I have remembered that when I was a senior in high school I was sweating so badly and would get so hot my face would get all flushed. Irish ;D
Thank you for all your helpful replies (I think there is something called a male menapause Steve !)
Doctor has given me a cortisone injection to see if it works plus a Chest X ray. So we wait and see ! Jane
Hi Jane, actually you are right. There really is a male-menopause. When we were trying to figure out my problem that is one of the things they checked for. Its more subtle in men than women but men do get a drop in testosterone levels that can produce similiar menopausal type symptoms. I did have mine checked and it was fine.
Steve
Well there we are ! Hope you don't throw things like I used to ! Jane
Jane:
I get that hot / cold feeling too especially at night. It makes it so hard to sleep as I am switching on a fan one minute and throwing on sweaters the next minute.
My mom has a friend who is 91 and still has hot flashes (great). ???
Sue
Hi Jane,
Adding my 2 cents - I also attribute all three to Sjogren's.
I have real trouble with heat and sun intolerance. I can tolerate sun if I wear a hat, long sleeved light colored tops, and if the overall temperature is cool. But if it's warm - forget it. I become weak, fatigued, and almost nauseous. I sweat heavily, but not under my underarms. My face and chest and head become soaked. Once I start to sweat, then my skin begins to itch. Lovely. If the sweating and resulting itchiness happens in the evening or early nighttime, I take benadryl, which relieves the itch and helps me to zonk out to sleep. Unfortunately, the benadryl is also drying, so I try not to use it except when the itching is extreme.
Hang in there!
Julia
Thank you everyone. You have really made me feel better. It really helps to know that lots of people have the same problems. Today I think it's going to rain. Hurray !! ;D
I actualy loved the overcast days we had here the past week,, temps were cool and I felt half way decent, yesterday the sun was out, my face got beet red and I felt nauseous all day,, and to think two years ago, I lived for the sun,,
When I told my immumologist about my itchy, burning skin that almost feels crawly sometimes he told me the name of what I was experiencing. He said it is an autoimmune phenomenon and it was an odd word so I can't remember it. How come he knew what it was and none of the umpteen other docs had no clue???? Irish ;D
Irish, the answer to that is the very reason that this site was set up ! Because not enough is known about Sjogrens, it has many roads as we all have found out, Ohhh...when will the day dawn that we will find the answers to all our problem..
Let us pray! Dolly,
Thats why I posted a you-tube video recently. I wish I had found something like that when I was trying to identify my symptoms. I encourage others to do something like that.
Steve
Hi Jane,
I too have problems with my "thermostat" the last several years. I'm hot/I'm cold and back and forth over and over again...all the while sweating up a storm (from my head to the tips of my wigling toes). Lately I also find that my fingers are doing the color mambo. :D My finger tips to the elbows & feet go from ultra white, blue, and red quicker than my cat runs to the food bowl for his dinner (dang, I've been patriotic and I didn't even know it ;))!
Oh the stinging skin - ouch! For me it's the face and neck/chest area that stings in the sun light. I find that I can't use a wash cloth in these areas as it hurts a lot more than the sun.
Take care -
Patze
Patze, have you been checked for Sclermoderma? It does a number to your finger tips.
Steve
Hi Steve,
I've not been checked for that yet, but I have to see the rheumy in a couple of weeks and I'll ask him to check - I just hope he's in a good mood!
About making a video, I'm a bit camera shy, but I'm glad that you made yours though!!! It'll help some folks out there talk to their doctors about their issues.
Take care -
Patze