Author Topic: coldness with Sjogrens  (Read 333 times)

Dolly Dimples

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coldness with Sjogrens
« on: June 07, 2018, 11:00:19 AM »
Hi all.
      Anyone here have issue with keeping warm. Its just about summer starting here in UK, but I am still absolutely feezing cold.

     Its hard to get appointments with ones Doc, last time I mentioned how cold I am the Doc just changed my BP tablets but that
has made no difference at all,
 I am near to tears every day,    everyone else going about with thin summery tops etc' me still in woolies ( and still cold)

  Anyone else have similar issues with coldness . I am now 81 and fear that this Sjogrens will get me in the end.
                                    My best wishes to all.   Dolly.  in the UK

araminta

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Re: coldness with Sjogrens
« Reply #1 on: June 07, 2018, 01:35:04 PM »
Not exactly the same thing, but maybe related.   Since getting these symptoms my temperature regulation seems not to be functioning, I often have night sweats, and some days I am forever putting on and then taking off warmer clothes.   I mean literally within minutes of feeling cold and putting on a woolly sweather, I'm far too hot.   I think I've just got used to this now, it's by no means my worst symptom.   I'm sure it isn't your worst either.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Honeybee

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Re: coldness with Sjogrens
« Reply #2 on: June 07, 2018, 06:53:16 PM »
Hi
I do have the same problem as yourself. Today for example during my op for ic, my temperature dropped to 30! I awoke to being warmed in a bubble blanket. I reccomend little water bottles which you can get from some of the cheapy stores in the high street. I place them everywhere inside my clothing, I went to bed a couple of nights ago wrapped in a scarf........
It does seem that auto immunity chaps do have a problem with self regulating temp.
Keep warm xx honeybee

ohiolady

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Re: coldness with Sjogrens
« Reply #3 on: June 08, 2018, 05:36:08 AM »
Hi Dolly. I am sorry to hear you are suffering. This seems to be extreme. Hopefully others will come along with helpful information.

Anna
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Navigator

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Re: coldness with Sjogrens
« Reply #4 on: June 08, 2018, 07:39:16 AM »
Hi

You could also have low thyroid hormone which results in (among other things) feeling cold.   You mentioned you are 81.  Thyroid hormones can decline with age and not necessarily be autoimmune related.   Have you been losing weight?  Loss of body fat can also make you more prone to feeling cold.

I tend to always wear sweaters except in the hottest weather.  I also bring sweaters with me when going out to a restaurant or the mall etc because the Air conditioning can be too strong for me.   

If your thyroid levels are adequate then join me in the sweater brigade. :D
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Dolly Dimples

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Re: coldness with Sjogrens
« Reply #5 on: June 08, 2018, 10:57:38 AM »
thanks for the replies,  you would not believe how many clothes i wear at any one time.

 I am convinced its due to Sjogrens! . My winter fuel bill will be through the ceiling when it comes soon..
                      Praying I live to see a cure for this affliction soon.  Hugs to all, Dolly x     

SjoGirl

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Re: coldness with Sjogrens
« Reply #6 on: June 08, 2018, 02:22:15 PM »
Ask about having your autonomic nervous system tested. I'm not quite sure how that might be done, but it is one thing that controls body temp.

I had a terrible time with temperature regulation for years, either freezing or sweltering at times when I should have been the opposite. I had to try to keep room temp around 72 all the time or I suffered.
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Dolly Dimples

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Re: coldness with Sjogrens
« Reply #7 on: June 09, 2018, 11:10:47 AM »
Thanks for all the replies,  I have had SS for many years now, I was among the first members of this site, and have found many a good tip. but Sjogrens is still not looked upon as something so serious,  well that is here in the UK.. I have never been sent to see
 a specialist all these years I have had it... have had more help here than any other .Dolly x
 
 

Scottietottie

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Re: coldness with Sjogrens
« Reply #8 on: June 12, 2018, 03:37:44 PM »
Hi  :)

looking through the posts I see Navigator asked if you've had your thyroid checked. I was thinking the same thing. One of the symptoms of going 'hypo' is inability to keep warm. Before blood tests they used to get suspect patients to take their temperature when they woke up in the morning and keep a chart. Hypothyroid patients always showed up lower then normal.

It may be the sjS but it may be worth asking for a blood test to check.

take care - Scottie  :)
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cccourt1942

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Re: coldness with Sjogrens
« Reply #9 on: June 13, 2018, 08:44:02 AM »
Dolly:  I know you are in the UK, and my recollections of the UK can give me chills.  Cold chills!  I live in Texas, it's mid June, and this a.m. I have my A/C on 75, two pair of socks on, AND am wearing cotton gloves as I work on the computer.  I do NOT have Raynaud's.  I've been this cold (hands and feet) ALL my life.  As I've aged, I have acquired a cold torso.  I wear t-shirts or undershirts all year round.  I take a hoodie with me to the dr's office, the movies, etc.  I take sweaters to the theater...and more often than not will turn my A/C off in my car if the inside temp is under 80*.  It's just how I am. 

Good luck, and keep a blankie and those WONDERFUL hot water bottles filled!!  I love those.
ccc
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