Summer temperature reactions

[Roswen]

My 14 year old daughter was diagnosed with Primary Raynaud's in 2017. Her reactions to cold weather are becoming more controllable but we are experiencing complete opposite symptoms in the Summer and are trying to find out if this is another condition. She can faint, will be sick has burning swollen hands, fingers, face, becomes quite red etc. These conditions are not preceded by being cold(as in Raynaud's) - in fact they've happened when she has had a stable temperature but has begun to feel too hot such as in poorly ventilated classrooms/out on sunny days. We cannot find anything on the internet about these opposite conditions and they are in fact more difficult to control than the reactions to cold. It is becoming life affecting now. The only condition we happened across is Erythromelalgia and wondered if anyone has similar problems.

[Hidden]

My hands are very swollen in hot weather and it is excerbated my excercise. I have also looked up if anyone else has the same problem but it is hardly mentioned. I have crest with joint involvement. Hoping you get some answers soon

[Alice1956]

Hi Roswen.I am in a local scleroderma support group.We all have secondary raynauds and some of our members also have erythomyalgia as well. X

[Zazzel]

I’m interested to hear what you find out. This summer has been particularly odd for me. I have had Raynauds for years and even in the summer when I hold a glass of ice water for too long my fingers will turn white, but not this summer. It’s been extremely hot in the upper 100s so maybe that is why, but this week I was defrosting my freezer. Normally this would have been a nightmare for me, but my fingers turned red! Not whir, not purple, but red like a normal person and as soon as I put them under look warm water, they were fine within seconds not minutes.

The other strange thing is I’m noticing bright red patches on my skin if I put any pressure on it for a period of time. I had been sleeping on the side of my face and all along that side it was fiery red for about 5 minutes. Same thing happened on my legs. Not a normal red like anyone might get, but a fiery red like I’ve never seen before and my legs have been aching nonstop with fiery feet. Some sort of neuropathy, but the doctors can’t figure it out.

[Roswen in reply to Zazzel]

Hopefully my daughters next hospital apointment will shed light on matters. They won't prescribe her any drugs yet but being too hot at night might explain her insomnia that she's had for 4 yrs too. Your symptoms sound similar to hers and I've now had a few people mention Erythromelalgia as a cause.

[Zazzel in reply to Roswen]

I hope she feels better soon. Have you ever tried sleep hynosis? It worked great helping me to sleep. You can find lots of different ones on YouTube. Thomas Hall is my favorite. I also take a very low dose 1mg of melatonin which helps, but you have to be careful with it even though it's over the counter as it can cause depression and suicidal thoughts in some people. It's done wonders for me though as it helps me get drowsy and go to sleep. Good luck!

[Sanmateogirl107]

I HAVE ERYTHROMELALGIA OF MY HANDS NOW GOING UP MY ARMS AND BOTH FEET. IMMUNE DOCTOR. PROBIOTICS CAN HELP ALOT, FISH OIL, THERE ARE SEVERAL MEDS ASK THE DOCTOR ABOUT. GOOD LUCK. JULIE

[frillyhilly]

Hi Roswen, so sorry to hear about your Daughter.

Normally I find summer time hard to cope with because the humidity makes me feel sticky so I take off a layer and then am immediately too cold because in reality the temperature is not as high as it feels. Humidity is like the opposite of wind chill. It can give the impression that the temperature is between 1C and 5C higher than it is. I believe that In the UK humidity is usually between 50% and 60%. I use the Met Office website to monitor the weather inc humidity - enter where you live then press "More Details" to see humidity : metoffice.gov.uk/

However, this summer is so odd. I started with swollen and painful hands in June (and found a post on here from someone else with exactly the same symptoms) and my hands were so hot inside ! The "inside hotness" was Initially inside my hands only but as the weird summer has progressed I often feel heat inside my feet, my arms and even my legs. It is so weird, the only comfort is so many of of us seem to have it.

My main concern is that because my hands are hot I think I am ok but in reality my hands can be cold on the outside. My husband has taken to checking me out regularly because I am totally unaware of the temperature and so am at risk of an attack.

Take care, N.

[Roswen in reply to frillyhilly]

When i asked my daughter about how hot her hands feel she said when it's the cold white, blue, red Raynaud's reaction she feels hot on the inside but she is cold to touch. she said the burning heat version is very hot and itchy and her skin feels as hot to touch as if she'd been sitting in front of a blazing fire. One day at school this Summer they put her in front of a fan and she laid down in the medical room for an hour(part of her care plan to avoid regularly missing school) - legs raised etc. and then began being sick too. I had to collect her and she was so tired that I thought well maybe she has got a bug after all but once getting home, changing clothes and resting a bit she had cooled down and was back to her normal self other than some sore fingers and a blotchy face.

[frillyhilly]

I can't imagine how to cope with such changes in body temperature. It sounds so risky putting her in front of a fan - I cannot cope with a fan at all - guaranteed Raynaud's attack. It sounds like she was having a severe Raynaud's attack as soon as she was left in front the fan. I hope you get a hospital appointment for her very soon. N xx

[Bec9680]

Best advice I can give you is when something weird is going on with the body it’s usually because something foreign in it or out of balance. You could have her checked for mycoplasma infection although it could be another infection. There are some great doctors on the roadback.org that will do better tests to get to root cause unlike your regular primary doctors do. Also make sure she is feeding her good gut bacteria with probiotics & prebiotics to help fight off any bad stuff. Just sharing what has worked for me and others with Raynauds & scleroderma. I pray you get some answers soon.

[Lupiknits]

This is interesting. I have Secondary Raynaud’s with the usual symptoms in cold or cool weather, but Erythromelalgia in my feet in warmer weather. The Erythromelalgia gives me the sensation of burning, especially in bed at night, but when I went to rub my feet the other day I found they were as cold as Raynaud’s. I’ll ask about it at my next appt.

[hippolover]

I wonder if the sickness attack at school was migraine related. Migraine is often triggered by heat and migraine and Raynaud's often go together.

[Jacko37]

Hi, I've got severe raynaurds and get ulcers and sores on my fingers in the winter. However, what's much worse for me is the burning that I get when it's warm, the total opposite of raynaurds when my feet, hands and face get really red and hot which is very strange and really hard to explain to people. Sending lots of love to your daughter and hope she gets some help soon, sorry I can't help with any solution, X

[because0]

Hiya, I also have the same symptoms as your daughter. I was also in my teens when it became noticeable. Now late 50's, I had a very early menopause at 40. I was given treatment for what the doctor at the time thought was rosacea. I joined the rosacea society, and found that my symptoms did not fit the typical rosacea. Eventually I saw a rheumatologist who knew about erythromelalgia, and I was so relieved to find someone who was well versed on the condition. I used to be on iloprost twice a year at hospital for my raynaud's in the cooler months, then beta blockers in a low dose for the warmer months. This has now stopped, in favour of sildenafil (viagra) taken at home, to treat the raynaud's side of the problem. I get severe headaches and allergic reactions and chose not to take it.

I wish your daughter well. I know what it feels like. People try to be sympathetic,but they only see the redness and swelling of the hands, but do not feel the discomfort that accompanies the opening of the blood vessels, which can also cause stomach pain. Heat, sunshine through glass, or fans, can all bring on an attack. I can only manage to cope in my home, where I can set the temperature etc., outside in the community is terrible to cope with. It is good that there is a forum like this, and that one day someone will find the reason why our circulation behaves in this way, or fit us with a new thermostat. Sorry not to have been of much help,but at least your daughter realises she is not alone, and is lucky to have such a good mum who cares about her. Best wishes to you both, and if you do find some new ideas that work it would be great to hear about them.