Yesterday morning I was so happy. With a good friend I was going for a decent walk: great company, beautiful surroundings, some longed for warm, dry weather and we were even treated to some sunshine. Feeling positive.
I started to feel tired much more quickly than usual but everything else was so good that I carried on. By the end I was exhausted and by the time I got home I felt quite unwell. It feels different to previous flares. I ache all over, rather than severe pain. My legs especially but not the usual aches from walking too far. 24 hours from starting the walk I still feel exhausted, in fact I’m still in bed.
I’m really looking for reassurance. I want to be told that I’m not having a reaction to being out in the sun light. I have no rashes or other skin reactions.
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IsleofWight1
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I can offer my sympathy and gentle hugs IoW🤗🤗I am extremely UV sensitive and had to go for a rheumy appt this morning. All in all I was in sunlight and fluorescent lighting for approx 1 hour. I wear rash clothing and a wide brimmed hat and sunglasses. I wasn't walking coz hubby pushes me in a wheelchair so we can get there as quickly as possible.
This afternoon my muscles are on fire...especially my bum cheeks and legs which considering I didn't even walk anywhere I'm feeling like I've scaled a very steep hill!! When we got home I went back to bed to have an hour's rest coz I know what that big ball of 🌞does to me. I haven't got a rash either so far but I do feel like I've run into the brick wall. All I can say is rest as you must n don't be too hard on yourself. We all have to learn about what we can and cannot do and it's all about finding your way through the lupus maze.
At this time of year I find it particularly difficult to navigate photosensitivity as we don't really get much build up to sunny weather..it just happens..and its incredibly strong compared to the grey rainy weather we've been having lately. It's easy to get caught out.
As for reassurance IF this is a reaction to the UV you can still go on lovely walks with your friends. I would advise an early morning walk to see the sunrise or an evening walk to watch the sunset. Check the met office weather forecast in your area on the day of the walk as it gives UV readings at the bottom of the page. Uv is at its strongest from about 10am -3/4 pm so I always stay home during those hours. I've now got a selection of wide brimmed hats and I always wear sunglasses and rash clothing (I have leggings and a long sleeved top that I wear under my clothing). Sunscreen is advised but unfortunately I can't use it as it causes skin rashes for me. Choose spf 50 at least.
One more thing to be aware of the reflection of the sun on water..especially the ocean..the UV reflects off of the surface and increases it's UV factor.
Try not to beat yourself up about it too much..as you're laying in bed recovering you can think of that lovely walk and maybe have a look at some rash tops leggings and wide brimmed hats. 😹Hope you feel better soon 💜🌈🦋xx
I've always been sun sensitive due to blond hair and pale skin when I was younger so I've never been a sun worshipper. I was diagnosed with Subacute cutaneous lupus (SCLE) in February 2017. I was advised then about photosensitivity as apparently 90% of people with this particular form of lupus develop it.I also had a really bad flare up and was covered all over in rashes in February the next year and at first I couldn't understand why. Then we realised that it was the florescent light I had in the kitchen and bathroom (I had recently moved into a bungalow) so we've had to change the indoor lighting too.
If you look on lupus UK website and scroll down to Eclipse you'll find lots of info on photosensitivity on there. Hope you're feeling a bit better today 💜🌈🦋xx
Hi IW. Unfortunately I don’t think anyone can tell you it was not an UV reaction. I think you are new to lupus if I remember right? It could also be you are finding the limits of your body right now. Going too far and rugged. And it could be both. Lean into it. Don’t overthink it or try to rid yourself of it. Rest. Sleep. Eat well. It will get better. MM
I get that weve been there but it's better to accept adapt and enjoy then suffer and lose out by spending days indoors in bed. I have a dog so being active outside is my life too but I'd rather be out for an hr and enjoy it then be out for 3 and suffer on the sofa for 3 days with migraine. Cover up head to toe completely inc hat and sunglasses use factor 50 all over all year seek out shade and don't be fooled by cloudy days. Once you get your head around it it's all manageable. X
I wonder if maybe sometimes our bodies are fighting us more some days than others too. Sometimes I can do a walk, take on stress and get off quite lightly but other days I can do the same and have the same and spend the next couple of days or more not being able to do anything much at all. I think I know now when I can feel a wave of impossibility coming and then I don't take on anything stressful or go out for long or even visit anyone just for a chat as I know it wont end well after. If I'm not feeling that dragging tired feeling I take on a little more. It's just so hard as we can't open ourselves up internally and see that maybe today our body is on the offensive with us and don't push it harder than it wants to go. I do find doing two things, walking and talking say is extra tiring than just walking by myself. Your brain has work double time.
Sounds to me like a uv reaction . My reactions usually take 3 days indoors to ease. If i dont cover up properly my maximum time outdoors is an hr then i end up with extreme fatigue,aching head to toe and a migraine . As lovely as it may look and feel outside you really do have to judge it all and learn to say no I'm afraid. X SML x
For the joint pains and fatigue to ease yes. Since the penny finally dropped a couple of yrs ago I've been able to manage it abit better and haven't suffered as much . I bought a gazebo to sit out under ,I have a couple of wide brimmed factor 50 hats,several.pairs of sunglasses..always keep a pair in the car and numerous bottles of factor 50 dotted around the house and in the car.ive not been abroad so don't know how I would fair. I started aching all over a few weeks ago which was when I assume uv levels rose high enough to affect me yet I still had a winter coat on. Our bodies over react to uv light ...see it as a threat unfortunately uv still comes through windows and from light bulbs . X
I also have sjogrens. Thought you might find this interesting
Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin. In response to the sun, Sjögren's patients can experience skin rashes, ocular sensitivity, pain, and disease flares.16 Jun 2020
how interesting this post and answers are - although I’m so sorry you had this wipe out after walking. I have systemic sclerosis and still fairly new to formal diagnosis - also Sjogrens. I’ve recently had same thing happen while walking the dogs with my husband. At the time I was enjoying warmth of sun at long last and still flaring with Raynauds despite this. My problem lately has been my lower back so I hobbled along quite soon into walk and got slower and slower with aches everywhere - not just in my back. By time we got home I could barely make it upstairs to lie down and felt totally exhausted along with the pain in every part of my body.
This was new to me so I rested and worried but idea of sun sensitivity never crossed my mind because I’ve not got lupus. I’m very fair skinned so use factor 50 and used to dark glasses and hats. It took 48 hours and a trip to physio yesterday to get my mojo back a bit. I have walked dogs since but covered up more and got home to same wipe out effect yesterday. I had been thinking more of possible Fibromyalgia (has never been mentioned by my doctors so far) as a response to the nasty lumbar arthritis flare or even myosotis because this is in my antibody overlap and thighs seem to have it worst. But this all body pain and bed rest 24/7 after a walk is new to me and can relate to your horror at the thought that it might be lupus sun reaction. I have a few pointers to Lupus which my mum had as well - but not the antibody - so really hoping not as I live for the sunshine and my daily dog walks.
I have UCTD and Sjogren’s I too live to be outdoors. I’m still fighting against this being UV related but my hopes are fading. Let me know how it goes for you.
I don’t know - I don’t have Lupus so far so this was me just crashing your post following similar walk experience! Hopefully it was just a chronic pain thing in my case rather than sunlight. I do get Erythromelalgia flares in face anf headaches with fluorescent lighting. I’m pretty home bound with scleroderma gut so no way am I avoiding sunlight or my limited life wouldn’t be worth living. I can’t wash windows as can’t lift arms that high. But bear in mind that with any systemic autoimmune disease - overdoing things physically will set us back with flares unless we are doing this activity very regularly. X
Sorry I read this wrong as you were washing windows not washing up by window! Personally I’ll take my chances with sunlight although I tend to avoid the hottest part of the day when it’s really hot - which is rare here in Scotland!
Apart from swimming, my hobbies have expanded..got sewing machine out, art books, things I never gave time to before as did three sciences at school. Looking forward to being a bit quieter and moving in and out of things socially. Mindfulness and being very very aware of how I feel is so important, plus having something planned to say to people that they will understand.
Golf clubs still in the cupboard but I have a plan to go to driving range and then start to play again cloudy days.
This year photosensitivity may not be quite so bad. I think Mepacrine has helped.
Such a blow for you. I hope you are finding the best ways for you to handle this big lifestyle change. The swimming sounds good. Thanks for the link, very helpful.
Really thoughtful responses here. I’m not sure if there is anyone like me/I don’t wear sunscreen at all. I wear color science powder on my face. My clothes have UV protection but not all. I just dress differently. My climate is conducive to linen all year round so I wear long sleeves. I walk and swim when my pool is in shade early evening. But finding my limit to exercising too much varies and it is frustrating. Typing on my phone as I am now I have to tilt it away from my face and eyes. Being UV sensitive requires change but as SpanielMadLady said it’s better to accept and do what you can outside. I have created an entire garden over 25 years. It has been my friend and passion. I now can work about one hour a day early morning before the heat. Had to hire help for first time ever this Spring. Like SMLady I didn’t build a gazebo but we built a screen porch for me off our bedroom that has Bermuda shutters all the way around tilted open enough for air and light. Putting in a portable air conditioner this summer so I can sit out there and read etc but enjoy the gardens. I don’t think I ever came to acceptance by willing myself. It came slowly. And TBH sometimes I still cry and rebelliously! MM
Glad you are having that much longed for weather . We too have it here in Cumbria . But it does sound like maybe you have perhaps had a reaction to the sun and fatigue has hit you . I’m no expert but this happens to me when I walk in the sunshine I get fatigued far quicker and quite often no rash etc . Rest up and I hope you feel better soon . Analgesia regularly , rest and plenty of fluids and hopefully you will feel okay again.
As everyone has said, it is not always easy to say if we have had a clear reaction from the sun. If I had gone on a long walk without sun protection and developed those symptoms, even without a rash, I would know it was the sun. Were you wearing sunscreen?
Don’t mean to alarm you but a study that was done years ago in Puerto Rico showed that kidney function in lupus patients was closely tied to sunscreen use.
Have you ever had a rash after being in the sun? Some of my worst flare - one with urine abnormalities - was after sun (with sunscreen) with fever but no rash.
There are great products now that will allow you to take walks and even swim. You may look like an alien, though!
I had bare arm and head , sun cream only on my face on that particular walk. The symptoms started early in the walk and I felt exhausted and unwell by the end which is a first. Other times I’ve felt exhausted the next day.
I’m going to test it though. I feel just about ok today. Later I have to go out so I’ll get a bit of sun exposure and see what happens.
I’m still confused.
Does exposure to UV have an effect straight away, as I think I experienced on said walk,? I’m keen to hear other’s experiences.
I’m thankful that so many people are engaging in this conversation. It is very important and informative for me and probably many others that are still learning and struggling to cope with new symptoms
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