Severe heat intolerance

[Ambennett]

Hi there,

I hope you are all doing well. Just was wondering if anyone could give me any advice on really severe heat intolerance and immediate bright red rash on face..I would be really grateful for any advice x

[KayHimm]

I have heat intolerance from autonomic dysfunction. I have also gotten the flushing facial rash. Make sure you mention these symptoms to your doctors.

K

[Ambennett in reply to KayHimm]

Hi there, thank you so much for replying to me. How to you manage to control this? And do you also have lupus? It's making everything she does really difficult and I dont see this mentioned as much. Thank you so much for any advice, I hope you are well x

[KayHimm in reply to Ambennett]

I have UCTD, lupus-like illness. The automatic nervous system can be affected. Do you ever feel light-headed after standed?

Please tell your doctors about your experience.

[Ambennett in reply to KayHimm]

It's my 20 year old daughter. She was diagnosed at 18 with sle lupus, raynaulds, livedo reticularis but has mentioned this about being really sensitive to heat. It's really causing her problems and just unsure if it's a symptom from the lupus or whether it's something else. She just has to get a bit warm then the really angry rash appears across cheeks and nose and feels really sick and struggles to cool back down again. Shes not been very well with massive flare up for last 7 weeks so has said feels light headed when up but thought may have been due to being unwell. Thank you for being so helpful x

[KayHimm in reply to Ambennett]

It is really hard to know whether it is the sun or the heat. With me, it was easier because I was not in a flare.

Can you tell me what the conditions are that lead to your daughter’s rash? What is the heat intolerance?

I have heat intolerance, photosensitivity, and photo allergy, so I know how hard it is to figure out what is what.

[Ambennett in reply to KayHimm]

She cant go in bath/shower more than a few minutes without feeling really sick with rash bright red. Outdoors only takes a few minutes to appear also. Cars or transport becoming s nightmare, absolutely can't put heating on windows are open. Can even appear when shes af work near windows as well as some rooms at university.. as well as in house if heating on for a while, even though everyone else needs it on so really hard for me to say which is causing what.. she just becomes really nauseous and wiped out for a while after this happens, it gradually fades away but trying to see if anyone has similar problems and if it's her lupus or something else. X

[KayHimm in reply to Ambennett]

So it sounds like it is not just the UV damage, which would be classic lupus. Heat intolerance certainly is a symptom of autonomic dysfunction. Have you mentioned this to her doctors?

The test that confirms POTS and orthostatic hypotension is the tilt table test, which I understand is hard to get in the U.K.

Message me and let’s put our heads together.

Xk

[happytulip]

I second everything Kay says.

I'm sorry, I am really tired so I will be brief.

I have POTS as a result of SLE (it damaged my autonomic nervous system).

POTS UK has alot of information on their website.

When she feels sick, what is her heart rate doing? She might be nauseated from a really fast heart rate which can be caused by POTS.

Lots of GPs know nothing about POTS but there is a good section on their website that you can print off and take to the GP with you, it's specifically designed for this purpose.

I mange my heat intolerance with black out AND heat proof curtains. They have to be heat proof. Its made a massive difference.

I also use fans, I have an air-conditioning unit in my bedroom.

I also purchased some gel packs from Amazon that you can keep in the fridge during the day and lay on at night. They are half body length.

Stay well hydrated, it's really important and I have a dioralyte once a day because bit helps me stay hydrated. I have to drink plenty of cool water so keep bottles of water in the fridge as that helps you keep cool too.

I am one of 7 cousins with AI disease, and either POTs or IST (inappropriate sinus tachycardia).

You describe alot of symptoms of POTs so might be worth asking for it to be excluded. The ultimate test is a tilt table test and the national centre is the National Hospital bfor Neurology and Nervous Diseases at Queen's Square in London. My family have a loyalty card! Can't recommend them highly enough.

You can get referred for testing anywhere of your choice, I think, but I don't know where you live so there might be a good place near to you.

I'm not on Facebook but apparently there is a good POTs site on there too.

Obviously, I'm not saying this is POTs but it would be a good idea to investigate it as a possibility?

I'm also extremely UV sensitive too. I had to take out all of my halogen and old style energy saving bulbs and replace bthem with LED. I was collapsing all over the place under fluroecent, halogen and the old fashioned energy saving ones but under LED I am fine. Unfortunately I can't go out in the sun at all.

Please contact me if you need any further info . So pleased you posted.

Sorry for typos, very tired and fat fingers!

[KayHimm]

Happytulip has great information about services in the UK. She knows a lot about autonomic dysfunction and also recognizes symptoms.

It is good you posted. We aren’t doctors. But these symptoms can be overlooked. Hope we have helped you to get your daughter the tests and treatment she needs.

Best of luck.

Xk

[happytulip in reply to KayHimm]

Thank you Kay, yes, with 7 of us in the family with POTs/dysautonomia we have a lot of knowledge. A family get together is more of a dysautonomia conference!

[KayHimm in reply to happytulip]

That is truly amazing. The doctors at the dysautonomia center must want to study your family! You have a lot to share here. It seems there is more research and understanding into the relationship between autoimmune disease and POTS. I agree that GPs are not that familiar with it.

I do not have the increased heart rate from standing. My heart rate drops with the blood pressure. So mine is not POTS. It is called « mixed » cardio something.

We should do videos together! I would be housebound in the summer if it weren’t for my mini fans. I am known in the neighborhood as the « lady with the fan. » 😅

Xk

[happytulip in reply to KayHimm]

Yup, we also have AI overlap conditions and elements of EDS. The only bonus is we don't have wrinkles!!

Some of us have been recruited into the Grid study, we're a medical mystery. The one good thing is that we can support each other.

Half of us are medical so we are able to manage things relatively well and don't have a problem with tackling any doctors who don't take us seriously. Although all of us have at one point been told that "it's all in your head" and have had to get a second opinion.

That's the KEY THING. Going to the right person for a diagnosis. They need to take POTS seriously.

My heart rate went up by 45bpm just by going from sitting to standing. Not sure how I managed that "in my head."

I must be a Jedi!

[KayHimm in reply to happytulip]

Haha .. you are a strong woman, that is for sure!

Yes, these diagnoses are not easy. And there aren’t a lot of autonomic centers. In New York it is impossible to get seen by the one here - and my rheumatologist works at that hospital. But he and the neurologist eventually got things sorted out.

Check out the Heart Partner by Sonostics. I am using mine now. Thinking this product could be good for you. Let me know what you think.

Xk

[Ambennett in reply to KayHimm]

Thank you again for being so kind and helpful.. all help and advice is so appreciated xx

[Ambennett in reply to happytulip]

I'm so grateful for your help xx

[tiredmum]

Hi there,

I too suffer from severe heat intolerance to the extent I feel nauseous, shake, feel like I am going to collapse and retch. I have Lupus and APS but however hot I feel I find that I don’t sweat, I can’t remember the last time I needed to wear deodorant.

I have learned to sip cool water, put my wrists under a Running cold tap, use ice packs around my body, wrap a cool damp towel around my neck, use a cold wet flannel on my face, have cool showers and lay in a dark room. We have also bought air conditioning unit for the bedroom so I now just hide in there when j get too hot.

It is awful, I have mentioned it to my Rheumy consultant but he had no idea what was causing it.

I hope these tips help.

Nic

[Ambennett in reply to tiredmum]

Hi there, thank you very much for taking the time to reply..

Do you also have sle? I didn't realise this was so much of an issue as her joints has always been more problematic so feel this has been sidelined without much information.

Thank you for replying to me hope you are keeping well x

[MVJohn62]

Hydrating body cells is important.

Drink water as much as you can.

Normal urine output should be minimum 5 litres ber day.

[Ambennett]

Hi there,

Thank you for replying to me. Shes actually quite good and has water bottles with her constantly and a fan. But seems to trigger so easily. Do you have this symptom along with lupus? Hope you are well x

[heatherevans28]

The Lupus malar rash is generally not triggered by heat and the symptoms you describe are also not classic lupus, so this does seem like something else. That doesn't mean it isn't connected though, or indeed that it's not fixable.

It could be POTs, as discussed above. Equally it might be a side effect of her medication or a combination of things. How long has it been this bad? If its suddenly come on then it might be an underlying infection so definitely get that ruled out / in first.

It's definitely worthwhile for her to discuss it with her specialist when she next speaks to them, or her GP if it has suddenly come on. Unfortunately referrals are currently limited by lockdown, but it is something to explore longer term.

In the meantime, see if high water intake and rehydration salts help. Also if she is feeling faint or does faint then eating something salty may help. This is not a long term fix, but works for me temporarily. I'm currently under investigation for pots. They've ruled out the other possibilities but now referrals are suspended so I'm managing my symptoms as best I can meantime.

Hope this helps x