Evening everyone,
How has everybody coped in the really hot weather we’ve had these past couple of days? I’ve managed to get out and about but after a couple of hours my head starts throbbing, my feet swell and I start with extreme fatigue along with fever/swollen glands - it’s almost like having the flu!
How do you deal with having to go out when it’s this sunny?
Leenie x
I don't go out, windows shut..curtains shut with a big industrial fan blowing .....I go out after 8 PM here in uk when it's cool open all windows at around 7 pm, the sun and heat make me physically sick with headache and fatigue
Only on days like yesterday...today is 24 bit more bearable...wear hat shades and stay in the shade I'll be ok with 24 for a bit
Ah I have just had sunglasses on and never really been a hat person - I’m looking online now at hats because with the hours I work I can only get stuff done in the day on the weekends. All our shops shut (problems of living in a little village the middle of nowhere)
My family had a barbecue on Friday and I was fine for an hour or so but then I had to take my chair into the shade and keep my shades on, it’s really horrible 😞
Leenie x
U want a large brimmed hat..plenty of factor 50+ sunscreen ..cover up as much as possible..n be aware that being by the sea enhances the UV rays from the sun..it reflects off the water..snow does the same!! I'm the same as the others who have replied..I stay in with curtains drawn!! Xx
I didn’t realise being by the sea could do that I’ll make sure I take more care when I go down there as we like to take the dog there or the local lakes
Leenie x
I saw lots of lovely hats in TK Maxx recently. May be worth a look on line.
I’ve just ordered some from pretty little thing they had the larger ones to cover everywhere, got one in black one in cream and then a light grey baseball cap. They should be here in a couple of days, fingers crossed!
Leenie x
Glad you found some lovely hats. I must have a look at pretty little thing. Yes re the car situation. I think more happens than you realise inside a car on a sunny day. Hope you are feeling better today. I am still finding it near impossible to walk. Hopefully, tomorrow after another night's sleep. Take care x
Northernd has it right - you have to avoid it as much as possible between 11am and 3-4pm. I appreciate it is difficult if you have to go to work but even then the trick is to stay indoors and when outside stick in the shade and carrying an umbrella to provide moveable shade is also good. You should only have windows/doors open when the inside temperature is higher than outside - early morning is best and then shut them all and draw the curtains.
Where I live we have had a week where the temperature has been over 30C every day and got to 35C on two days. And no aircon...
Jesus that must have been hard work with it being that hot! Where I live it’s been nearly 25 but didn’t quite get there. That’s one of the good things about living by the sea we still get the breeze off the ocean.
Like I said to northernd I’ve never been a hat person but I’m going to buy one now, maybe become a hat collector ☺️
I always keep hydrated when I’m out, every day I drink between 2-3 litres of water so I was really confused when I started noticing this in the hot weather.
Leenie x
Very thin shirt, sunhat and shades are essential parts of life. And an umbella if necessary! Everyone in China and most in Korea walks around with an umbrella - whether it is raining or not!
I noticed that yesterday when I went with my cousin up into Windermere, sometimes we go for a drive up there for a change. I’d feel okay with an umbrella there but in my little village so many people would stare!
Leenie x
Let them!! The response is "Do you think you will recognise me next time?" or "Should I wear a burqa instead?"
I usually don't go out. Like others have mentioned, I too stay inside with fans on and curtains closed. However, I decided to go out briefly yesterday. As usual, sun cream on,sunglasses etc. I only went to a couple of places by car parking outside. Well, not sure what has happened but I cannot walk today even with 2 sticks! I can only assume it is the sun coming through the car windows. Worth taking lots of care when it is so sunny.
Aww I hope you feel better soon! I think cars can be deceptive as I got like this on the way back from my trip yesterday, really bad head then a fever I went right to sleep on the sofa for a 12 hour sleep!
Leenie x
From a LUPUS UK leaflet, “Coping with light sensitivity in lupus”,
...How does exposure to light cause a lupus flare?
Flares of photosensitive symptoms in people with lupus are caused by just a small part of the light spectrum called ultraviolet (UV) light. Ultraviolet light is so named because its wavelength frequency is higher (“ultra” is Latin for “beyond”) than the visible colour violet, and it is not visible to humans. UV light is capable of causing chemical reactions.
white-blood-cell-543471_1280UVA-2 and UVB rays damage the cells of the skin (keratinocytes) and cause sunburn, skin aging and skin cancer. When these cells are damaged by the UV light it causes them to die. In healthy people without lupus, these dead cells are cleared away quickly and any inflammation caused by the sun-induced skin damage is short-lived (sunburn). However, in people with lupus, the skin cells may be more sensitive to sun-induced damage and there is increasing evidence that the dying (apoptotic) cells are not cleared away efficiently. As a result the contents of the dying cells may be released, including those found in their nuclei. These nuclear proteins (also called nuclear antigens) are particularly responsible for interacting with the immune system of a person who has lupus (especially with the famous antinuclear antibodies of lupus), encouraging it to become more active and cause inflammation and damage to various parts of the body. Some light sensitive people may also be harmed by visible light, most commonly, but not necessarily only, in the blue spectrum...
Regards,
Alexa
Thank you so much from me too. It is extremely interesting to try and understand what is going on exactly x
Hi. Do you know if a similar reaction happens when mast cells rupture during UV exposure (ie in people with Mast Cell Activation Disease?). Thank you.
What an interesting question! It is certainly confusing for those of us with photosensitivity when we start having reactions from other causes, right? I had this dilemma. My best shot: mast cell degranulation is from crazy mast cells that start seeing things like heat, vibration food in an allergic way. In lupus, the sun’s damage sets off an autoimmune, inflammatory response.
The rash from MCAD or autonomic dysfunction can look like the lupus rash, but it is actually flushing.
Maybe others have a better explanation.
K
Hi. Thanks so much for your informative reply. I am seronegative for Lupus and Sjorgren's (and also lip biopsy negative, altho' my rheumy seemed convinced I have SS). I ask because my symptoms seem to fit almost perfectly with MCAD (I'll ask rheumy at next visit) and I reacted very badly to the heat/uv when on holiday abroad recently. My left painful knee (injured during a drop attack ~6m ago) became unbearably painful and was joined by the right one! I started wheezing and felt a tight band around my chest making it difficult to get a good breath (I have constant crackles in both lungs being investigated by a chest consultant). These strange symptoms have happened many times in the past, but I've never really connected them to heat/uv. Any advice or thoughts would be gratefully appreciated.
Oh, this is a really tough area. I hope I can help. I also had symptoms of mast cell disorder — reacted to heat, temperature change, chemicals, perfumes. I had itching, sneezing, vasodilation and flushing. People with autoimmune disease apparently are more prone to these mast cell disorders. It turned out my symptoms are all related to my autonomic dysfunction. They can look similar because the nerves talk to the mast cells. So strange.
Do you mind telling me your symptoms? Good you are seeing a chest consultant. Mention this to him too.
K
Hi Kay. Yes, my symptoms have baffled quite a few consultants over the years (sounds familiar, anyone?), but I've only seen a rheumy once (February this year) and I'm awaiting review next month. I've had many strange symptoms which have waxed and waned and evolved over the last 10 or so years, maybe longer. Here goes the abridged list:
- extreme debilitating fatigue
- dx'd proximal muscle weakness and muscle damage to lower back, arms and legs
- drop attacks, which come in clusters (not dx'd, but I have white intensity spots in brain/cerebellum which have increased in size and intensity - MRIs, 2y apart)
- dx'd ataxia
- difficulty in word finding (recent symptom), headaches and dizziness (even when sitting)
- breathlessness, as described above
- night sweats and difficulty in adjusting to temperature changes
- cold feet, but not hands
- UVeitis (or Moiben gland disfunction) resulting in almost zero tear production. Difficulty focusing and cataract in right eye.
- dx'd mild diastolic function and bi-atrial enlargement
- constant pain in lower back, hips and shoulders/ back of neck/hands and wrists
- dx'd resting and intention tremors. Dx'd numbness at ends of fingers
- sharp shooting pains in fingers and sometimes toes.
- dx'd hypermobile (I'm 66yrs)
- facial flushing
- dx'd extreme reaction to insect bites. Permanent red, ring-like rashes on arms and permanent bruise-like marks on legs where I had reactions to bites
- hypercholestraemia and deranged LFTs
- consistently low IgM
Mmmm, quite a list, but it's helped me to put it down in writing. Again, any thoughts would be much appreciated. Thank you
Also(!!):
- dx'd chronic rhinitis and sinusitis
- allergies to perfumes, cleaning agents, moulds etc etc
I love the summer and live in New England in the states. It has only been in the high 80s, (31.1centigrade) so we have not hit our dog days of summer yet. But after April, due to skin cancer, I always wear a hat and sun protective clothes or screen. As to the edema from heat, other than pregnancies, I only had that happen once and it was right before my stroke and mine is believed to have been related to a heart condition. Now that a hole in my heart was closed I have no more swelling. Edema should always be mentioned to a GP. Hang in there. I keep thinking my family should move back to England and open a central air business. It looks like your country might be needing it more and more.
Oh you’ve been through so much! Hopefully when the hats come it should relieve some of the symptoms, I think we have some left over factor 50 so I’ll use that too. Over this side of the pond we don’t get that many hot days this at the moment is rare especially in north England near Scotland areas.
Leenie x
Feeling awful today as I was out for most of yesterday at the Armed Forces Day national event in Salisbury. I did cover myself in factor 50 but forgot to do my back - ooops! I did use my UV sun umbrella too as well as a hat. Had a headache all day yesterday and am feeling awful today. Sun and lupus really do not go together. I've also got several nasty insect bites to add insult to injury - we don't react well to those either! I did feel for the lads I saw in heavy wool worsted uniforms though!!!
From a LUPUS UK leaflet, “Coping with light sensitivity in lupus”,
...How does exposure to light cause a lupus flare?
Flares of photosensitive symptoms in people with lupus are caused by just a small part of the light spectrum called ultraviolet (UV) light. Ultraviolet light is so named because its wavelength frequency is higher (“ultra” is Latin for “beyond”) than the visible colour violet, and it is not visible to humans. UV light is capable of causing chemical reactions.
white-blood-cell-543471_1280UVA-2 and UVB rays damage the cells of the skin (keratinocytes) and cause sunburn, skin aging and skin cancer. When these cells are damaged by the UV light it causes them to die. In healthy people without lupus, these dead cells are cleared away quickly and any inflammation caused by the sun-induced skin damage is short-lived (sunburn). However, in people with lupus, the skin cells may be more sensitive to sun-induced damage and there is increasing evidence that the dying (apoptotic) cells are not cleared away efficiently. As a result the contents of the dying cells may be released, including those found in their nuclei. These nuclear proteins (also called nuclear antigens) are particularly responsible for interacting with the immune system of a person who has lupus (especially with the famous antinuclear antibodies of lupus), encouraging it to become more active and cause inflammation and damage to various parts of the body. Some light sensitive people may also be harmed by visible light, most commonly, but not necessarily only, in the blue spectrum...
Regards,
Alexa
Interesting question? Why does this trigger symptoms in some people?
My own uneducated guess is it boosts our autoimmune system like adding vitamin c or echinacea does. I think that is why most healthy people strive in sun. It is an autoimmune stimulant.
From a LUPUS UK leaflet, “Coping with light sensitivity in lupus”,
...How does exposure to light cause a lupus flare?
Flares of photosensitive symptoms in people with lupus are caused by just a small part of the light spectrum called ultraviolet (UV) light. Ultraviolet light is so named because its wavelength frequency is higher (“ultra” is Latin for “beyond”) than the visible colour violet, and it is not visible to humans. UV light is capable of causing chemical reactions.
white-blood-cell-543471_1280UVA-2 and UVB rays damage the cells of the skin (keratinocytes) and cause sunburn, skin aging and skin cancer. When these cells are damaged by the UV light it causes them to die. In healthy people without lupus, these dead cells are cleared away quickly and any inflammation caused by the sun-induced skin damage is short-lived (sunburn). However, in people with lupus, the skin cells may be more sensitive to sun-induced damage and there is increasing evidence that the dying (apoptotic) cells are not cleared away efficiently. As a result the contents of the dying cells may be released, including those found in their nuclei. These nuclear proteins (also called nuclear antigens) are particularly responsible for interacting with the immune system of a person who has lupus (especially with the famous antinuclear antibodies of lupus), encouraging it to become more active and cause inflammation and damage to various parts of the body. Some light sensitive people may also be harmed by visible light, most commonly, but not necessarily only, in the blue spectrum...
Regards,
Alexa
I don’t think it is perfectly understood, but the UV may damage DNA and set off an inflammatory response. It is about 60 percent of lupus patients who are photosensitive, I think. If I see an article, I will send it to you.
K
From a LUPUS UK leaflet, “Coping with light sensitivity in lupus”,
...How does exposure to light cause a lupus flare?
Flares of photosensitive symptoms in people with lupus are caused by just a small part of the light spectrum called ultraviolet (UV) light. Ultraviolet light is so named because its wavelength frequency is higher (“ultra” is Latin for “beyond”) than the visible colour violet, and it is not visible to humans. UV light is capable of causing chemical reactions.
white-blood-cell-543471_1280UVA-2 and UVB rays damage the cells of the skin (keratinocytes) and cause sunburn, skin aging and skin cancer. When these cells are damaged by the UV light it causes them to die. In healthy people without lupus, these dead cells are cleared away quickly and any inflammation caused by the sun-induced skin damage is short-lived (sunburn). However, in people with lupus, the skin cells may be more sensitive to sun-induced damage and there is increasing evidence that the dying (apoptotic) cells are not cleared away efficiently. As a result the contents of the dying cells may be released, including those found in their nuclei. These nuclear proteins (also called nuclear antigens) are particularly responsible for interacting with the immune system of a person who has lupus (especially with the famous antinuclear antibodies of lupus), encouraging it to become more active and cause inflammation and damage to various parts of the body. Some light sensitive people may also be harmed by visible light, most commonly, but not necessarily only, in the blue spectrum...
Regards,
Alexa
I just skimmed an article. It was too technical for me. Maybe someone on here with a science background will be able to understand it. Conclusion: Sun not good 😅. The DNA damage affects lupus patients differently and does cause rashes and systemic symptoms.
That article is more patient friendly. Thanks!
First, it is clear you are not feeling well, and I hope they get to the bottom of these symptoms. I can imagine they have baffled doctors. I am certainly no expert on mast cell disease but did have the work up. What you might want to mention to all the doctors is your response to temperature change and your flushing. Take photos of the flushing rash. This was very helpful as my doctors could see it was not related to my autoimmune disease. As I said, in my case it was the autonomic system causing these issues. They can all look frustratingly alike.
Do you have EDS? I remember the immunologist asking the resident who has seen me first about hyper mobility.
Good to put it all down in writing with photos.
K
Hi from MEGS53. Thanks for getting back to me. I have had the tilt table test, but it was negative for autonomic disease. However (and here's another symptom - sorry to be a bore) about 5min after the test I started shaking violently, so much so that they had to hold me and put me in a wheelchair until it resolved, in about 10min. This has happened many times since and I have reported it - rightly or wrongly - as an inappropriate response to physical stress. Strange or what??
Thanks for your views, any further ones would be appreciated.
Sounds like they have ruled out one aspect of autonomic dysfunction. That is a good first step. But maybe you could ask about the possibility of mast cell issues? You do have hyper mobility.
Hmm .. that tilt table test is a huge stress on the system. Have you mentioned that to your doctors? It set me back, for sure.
Do you have food allergies? Sneezing after temperature changes? Vibration sensitivity? GI issues?
You are not a bore! Just trying to help. Can’t diagnose but can tell you what made doctors suspicious with me and why the immunologist knew I didn’t have MCAD.
K
Hi, Yes, the tilt table test was a nasty one. I do have GI issues and was diagnosed with IBS many years ago - I just ignore the cramping these days - constipation and then I'm not (!) with urgency. No vibration issues, but I do get a runny nose on many occasions (I have chronic rhinitis and sinusitis). I'm beginning to think I might be allergic to yeast (as in bread products), but not gluten as I'm ok with pasta etc. I also have chronic post-nasal drip for which I use a steroid nasal spray. Any thoughts?
One thing the immunologist looked for was whether my symptoms occurred simultaneously. Have you had multiple symptoms when in contact with something?
Does the steroid spray help?
Hi. Difficult to say in general whether symptoms always occur simultaneously, but they certainly did on this holiday (painful knees; breathing difficulties; exhaustion; flushing). Almost always feel unwell while on holiday (?contact with the sun?), but not always with exactly the same symptoms as this time. In the past I've had what I regard as inflammation reactions - outer ear swelling and pain; sore throat; facial pain; weak muscles; just feeling plain awful!
Do you think it could be MCAD??
BTW, I thought MCAD was an AI condition?
Hi Leenie0811,
Hot weather? What hot weather? You need to come and live in the North East of Scotland! 🥶
Seriously though, must be awful to be so sensitive to sunlight. I hope you manage to develop a coping strategy.
Gentle hugs,
Fiona
ooh I can imagine it can get really cold up there! We've been to Ayre and Bute for long weekends and love it up Scotland. I'm yet to explore the east coast (other than Edinburgh) but would love to plan something... maybe next year when I've got some holidays to use again!
Thank you for the well wishes, my hats have been dispatched so hopefully they come in the next couple of days, I'm going to put an update on here when they come.
Leenie x
Happy Christmas from sunny LA!
Feel useless!! 
My son - photosensitive rash? 
Feeling low:(
hydroxychloroquine? 
