Bad day today

[yorkshiregirl44]

Hi,

Went to the shops with my daughter today which is getting more and more impossible. I expereince extreme hotness and sweating, sometimes the sweating feels more internal, this increases with moving around like taking a few steps. I can tolerate heat at other times like sitting infront of a fire when i am not moving.

I feel more and more like a prisoner in my home bacause of this, when at home i can stop doing what im doing and rest but this is more difficult when out and about.

Im posting on here because i reallt dont know what these symptoms are due to and also because i started on steroids a short while ago for PMR but did not respond well to them.

Maybe some members of this site may recognise what i am describing.

Thanks

[PMRpro Ambassador]

They are typical symptoms found in autoimmune disorders - and you very probably do have something of that sort. We all have been there and do sympathise. If you are still taking pred it could also be a side-effect of that - it does cause sweats in some people.

If what you have is PMR or something similar anything you do in the way of movement is a great effort for your body to deal with - and you break out in a sweat. It affects people differently: I can walk for ages in the fresh air and just have the occasional wave of warmth wash over me that I can deal with by undoing a zip or taking a layer of clothing off - I often stop to take a cardigan off and put my jacket back on, or remove a scarf. If I then go into a shop within a couple of minutes I'm dripping with sweat and can often feel quite unwell. My husband thinks I'm nuts! I've given up going to shops any more than I have to - no great hardship I have to say as it isn't my idea of a fun day out but I know I'm not a normal woman!

I'm afraid this is a new normal for you to adjust to - there really isn't any way round it for the moment. One answer might be to use a rollator when out shopping - it at least provides you with a place to sit and have a bit of a rest wherever you are and you also don't have to carry things and that is also tiring and can make you hot and bothered. Wearing layers of clothes that you can easily remove or open the fastenings does help - but I'm often to be found taking my coat off in a shop because I can't stand it any more! You have to remember that, whatever it is you have, you are not well and others have to understand that too and compromise on the day out.

[yorkshiregirl44 in reply to PMRpro]

Im no longer taking the steroids. As you say it must be part of some auto-immune condition. Never in my life have i been hot and sweaty not even during the menapause. Like you i dont really enjoy shopping as a day out and now only go for short spells. But even that is too much.

I have a real fire at home and after the trip to the shops it was lit and quite warm but i did not feel overheated...its so odd, but like you say it must be the movement that causes the hotness.

My concern now is that medics wont find whats wrong and i will not get any better.

[piglette in reply to yorkshiregirl44]

I had exactly the same symptoms. I would be sitting in a really warm room perfectly normally then suddenly I felt as if I were in a warm shower. I never had any menopause hot sweat problems, which was even more annoying. Why did you stop the steroids? What are you doing instead? Do you have PMR symptoms now you have stopped? What are your blood markers looking like?

[yorkshiregirl44 in reply to piglette]

I was on a weeks trial of steroids 15mg daily. I was took off them because i didnt have improvement in symptoms. I still have symptoms, pain in shoulders, hips and other joints, generally feeling rotten all the time. My esr was 33 prior to starting steroids. Im now waiting to see a rheumy.

[Celtic PMRGCAuk volunteer in reply to yorkshiregirl44]

Yorkshiregirl, I'm a little surprised if PMR is suspected that you were taken off steroids altogether after just one week's trial with 15mg for a couple of reasons: firstly, I have come across a few patients for whom it has taken more than a week to achieve a response to 15mg; and, secondly, there are a few patients who need a slightly higher starting dose of 20mgs to achieve control of their symptoms, particularly those who are a little on the heavy side.

I do hope your rheumy appointment comes through quickly and s/he comes up with a definitive diagnosis and the right treatment for you. Meanwhile, wearing just cotton clothing may help to release the perspiration away from your body rather than it being trapped against the skin by anything synthetic.

[piglette in reply to yorkshiregirl44]

Fair enough, I understand. It is quite a normal check to give people a week's trial and see if the steroids work or not. I am sorry they did not in your case. I hope the rheumy will be able to help. Let us know.

[PMRpro Ambassador in reply to piglette]

There are also recommendations to try up to 20mg and many doctors do so. Part of the problem can be that they are too impatient as Celtic has said - there also seems to be an idea that the pred achieves a 100% "cure" in a couple of days. Don't we all wish that was so!

[yorkshiregirl44 in reply to PMRpro]

Hopefully when i get appt with rheumy he will consider PMR again or some other condition causing inflammation.

[paddyfields]

Just a thought. Might be worth checking out the outdoors/walking shops. Although they are synthetic fabrics, the tops and trousers are usually engineered to have "wicking" properties (see the multitude of labels on each garment) and the moisture moves out through the fabric and away. Sometimes, on a very short walk I think O h I'll just wear a normal top and although formally never a sweaty person - quite the opposite - I will know all about it. Although nothing like as severe as the problems mentioned I can't tolerate any synthetic clothing because of the uncomfortable hot and cold feeling and it has become second nature for me to wear layered clothing. I had never heard about the connection with auto-immune disorders. Before I got an under-active thyroid dx. I used to say my (internal) thermostat wasn't working .

[PMRandRA in reply to paddyfields]

You are right, it is our internal thermostat which has gone Pete Tong. I am like a jungle shower when out or working (working? huh!) here at home and when at home I am down to my underwear otherwise I am pouring. As it is my sweats are mostly confined to dripping face, neck, head and sopping hair.

So many of us seem to have similar problems.

[lillegirl]

Hi there, sorry you are experiencing theses symptoms, what have you been diagnosed with, PMA? GCA? Are you still taking steroids? How many, how long?

Your post about the internal heat reminded me of BEFORE I was diagnosed. I had about a year of going back and forth to GP with different symptoms that were treated individually but not successfully, but not put together until GCA came into the picture. Alongside the other symptoms was the continuously recurring internal heat that I felt. I continuously mentioned this to the GP but it was generally ignored and we went onto other symptoms. When I was put onto 50 mg Pred it stopped but I still occasionally get the uncontrollable sweating around upper chest and neck, which I put down to Pred. Perhaps I am wrong, but by my experience I would think the internal heat (perhaps the inflammation through the body) is what should be abating if taking the appropriate amount of steroids!

Hope you start to feel better soon!

[yorkshiregirl44 in reply to lillegirl]

No diagnosis as such, was put on 15mg a day of steroids for a week then taken off due to no improvement of symptoms. I do know that my hotness comes from activity and today i have been listening to my body. Great when at rest and even hoding my mobile caused me to overheat. Got most recent blood result for esr today and its till raised. Still waiting for anca and ana results.

[Hidden]

Yes I have the same breathless sweats and it reminds me of the menopause ,I have underactive thyriod as well as PM . Cardigan is off and on like a yoyo , I get so unbelievably hot in shops My hair gets wet . Its embarrasing all that huffing and puffing . I asked my doctor what can I do about it , some vague reply about cotton clothes . Its not the clothes it will happen despite what I wear . Don't let it stop you going out , I keep a damp cloth in a plastic bag in my bag it helps to cool me down . I work with this its a damn pest .

[Judigardener]

Hello. Some of this is very familiar. I did have dreadful sweats through the menopause. I spend some part of every day dripping and like you said - wet hair. A warm shower and I have a face like the colour of a London bus.

I am seldom cold these days. Sometimes breathless. Now have Cushing's syndrome as a result of the steroids. Now on 10.5. Dropping 0.5 every 2 weeks until I get to 5. Started on 40mg but I am tall.

Also got under active thyroid and fibromyalgia.

And as if that's not enough I get about 4 shingles episodes a year and have done for 17 years. I wonder if there is any research on thyroid issues and PMR/GCA. I am 62. Diagnosed with PMR 2 years ago this month. So grateful for the contributions on this forum.

J

[Chihuahua1]

I know these symptoms all too well. Since being diagnosed with PMR I have never worn a winter coat. The most I ever need to wear is an unlined fleece jacket that's about cardigan weight: even that is too much most of the time. I do get the excessive sweating for no good reason, but what makes me feel even more unwell is when I suddenly feel as though I'm standing in front of an open fire roaring in a grate. My face turns bright red and my whole body feels as though I'm on fire from the inside, but I don't sweat. It feels as though I have a very high temperature with fever and lasts anything from a few minutes to over an hour. When it's over I'm left exhausted and feeling decidedly unwell. This started long before I started taking steroids so I can't blame the tablets. It has been a little better since starting treatment over 6 months ago, but not that much.

I agree that, as suggested by PMRpro, a rollator would be a good idea so that you can stop and rest regularly when you are out and about. Don't be too quick to force yourself to go out and about. Listen to your body and if it says to stay in today then follow its lead. Once you have seen your rheumy you should have a better idea of what the diagnosis is and you will then hopefully start the process of recovery. As we hear regularly on here, slow and steady is the order of the day. Too quickly and you are setting yourself up for a fall and having to start all over again from the beginning. I made that mistake the first time around and it is a hard lesson to learn.

[judam9]

hi Yorkshire girl 44,

i getting really hot when i start thinking out problems of some sort. even playing a game on FB. i don't know what is causing it. that is the only time. and i'm sweating profusely in addition to feeling hot. in the morning i'm very cold. guess i wasn't awake enough . but it is a mystery to me too. good luck to both of us.