i know that the sun gives me the spots on my face - the only place i get them, but does being out in the sun cause other symptoms?
i wear sunscreen on my face, but i wear tshirts and shorts cause i dont get the spots anywhere else...am i bein a bit daft?lol
According to my rheumatologist, the sun is my enemy. I’m on Plaquenil and have not had any lesions since starting ( they were mostly on face, but prolonged sun also caused welts on forearms), but still must cover up as much as the temperature will allow or my fatigue worsens tremendously. Since I am in the sun to enjoy my passions – gardening and caring for my menagerie – I try to do whatever allows me to stay out longer.
I think that is the sentence to live by: Do whatever allows you to enjoy your life longer.
I can’t take the sun much at all - it triggers a really bad flare up whereby
I end up in so much pain and so stiff that movement becomes very difficult
and the tiredness increases a lot too.
Helen
On 4/16/07, linzipd lupus-cpt2619@lists.careplace.com wrote:
i found out i have lupus about 6 months ago. for about 2 years before every time i sat in the sun i would get these welts and a rash where ever the sun was hitting my skin. i was hoping that being on meds, i would be able to enjoy the sun again. i guess not
i found out i have lupus about 6 months ago. for about 2 years before every time i sat in the sun i would get these welts and a rash where ever the sun was hitting my skin. i was hoping that being on meds, i would be able to enjoy the sun again. i guess not
It's not the sun but the UV rays so this means even in the winter, the rays still come through.
The rash doesn't just stay on the face. It can go anyplace. If you want to garden, wear gloves, cotton pants, socks, make-up or sun block and a hat. Remember, the UV rays can even go through your body through your eyes....wear sunglasses.
I thought if I used a tanning bed I would be safe. Not!! I get dizzy, hard nodules, feel sick and begin to run a fever. However, I get a great tan!! I’ve finally gotten through my thick head that my sun worshiping days are over unless I want to pay the price. It’s hard because we have a place at a lake and a boat. I love being on the boat all day (it’s a pontoon). The last “sun” attack was very, very bad and I was sick for weeks. I hate Lupus!!
Don’t give up the pontoon! Wear long sleeves, long pants, hat, sun
glasses and even an umbrella. There are UV blocking clothing and
hats. Can you rig an adjustable canopy to sit under? Don’t stay out
on the water ALL day. Stay off the water between 10AM and 3PM. In
other words – don’t give up what you love, just adjust to the limits
that Lupus has imposed on you. I have had lupus since 1976. Still
here and still trying to win the war with the wolf.
On Apr 17, 2007, at 10:27 AM, nanny wrote:
i think thats the hardest thing....the life changes you have to make. I still find it hard to believe that this has happened all of a sudden, but hey thats life lol
i guess it takes time to get used to it and realise your limits, what u can and cant do.
I was thinking of going for a sunbed, just to see what happens.... dont worry, i got over it! :)
oh and about plaquinel... ive been on it since last october taking 200mg then 400mg a day. there has been little or no improvement on the lesions on my face.
I remember reading on the notes for plaquinel that it shouldnt be taken for more than 6 months if there is no improvement.... anybody got any thoughts on the anti malarials?
I've had lupus now for 10 years and live in South Texas, where the summers are long, hot and humid. I don't have as much trouble with my skin being affected by the sun, but if I do spend time out in the sun, my joints swell and I generally have a flare. I also find the humidity if a factor and the heat in general. I do get brown spots on my face after prolonged sun exposure, but no sores, and I think it is caused more by the combination of my medications, to include birth control. I didn't see much improvement when I was on Plaquinel either and stop taking it. I am now on Immeran for a second time and am not seeing much improvement either. Celebrex has really helped with the pain I've had in my lung since having pneumonia last year. I suggest limiting your sun exposure to an hour or two at a time, and during the morning or evening hours, plus wear sunscreen (as everyone should). Get use to your pale skin and learn to LOVE it! Stress is the enemy, so stressing about your skin tone or face spots that can be masked with make-up is not good. Relax, enjoy your life and DO NOT let the disease stress you out more than it should. Good luck!
Hi all, I'm Randa and I was diagnosed in 1989. I've been lurking in the back ground and feel I need to come in and point out a couple things about sun exposure. First the sunscreen is a great thing. I use a baby formula spf 50 from Banana Boat. It doesn't feel greasy or oily. It feels more like a baby lotion. If you are sensitive to the sun I would not suggest going below an spf 30. Long pants, long sleeves, shoes and socks and even gloves are great too. Keep as much of the body covered as possible. There are light weight materials that you can wear but the sunscreen and/or the clothes are not enough alone if you are really sensitive. Believe I have battled this problems for many years so I am speaking from experience. My husband and I once had a Honda Goldwing (motorcycle) and I would not dare give that up but I always wore my sunscreen and all the clothing and we took breaks on long trips to get me juice (preferably something with potassium) or coffee (hot drinks will cool the body) and sometimes even wrapped ice in a towel to put around my neck. You can go out and enoy the sun if you take the precautions necessary for your body.
Another point I would like to make that I have not seen mentioned here is flourescent lighting. If you are sun sensitive you do not want to be unprotected around flourescent lighting, copy machines, and NO tanning beds. All of those flourescent lights put out the same uv's the sun does so they will affect the body as well. If you work in an office with flourescents and you feel worse after work than you did before it may be the lights. You can buy tubes for the lights to block the uv's or you can do the sunscreen and clothes. Tanning beds, if I'm not mistaken, also use flourescent lights. I was never much of a sun worshipper so a tan never meant much to me.
Reducing stress in your life is a huge factor as well. We just bought a house 3 years ago in the middle of nowhere Okl ahoma. I can go out and mow the yard now and not get sick. I still take precautions but I'm not as strict about them as I once was.
Just wanted to put in my two cents worth. Thanks for reading.
Love and hugs,
Ran
Hi, my name is Steffy. I have Lupus and just learning about it.
I have the pain all over my body, and the rash on my neck and arms.
I just came out of being in some god awful pain. I take plaquenil and Lodine,
and Tynol in between. Also other med. for other problems.
Since i have been on the medication i have been alot better. I don’t ever want to go back to the pain i was in.
I have been walking which has helped. I love the sun, but i have a feeling
i’ll have to be careful there.
Enough about me, i hope everyone is feeling better that summer is coming.
Do you feel better in the winter or the summer. I am just learing about
this and hoping i will learn from you and my Dr.
stphnvnsn
Hi – thanks for your message. My pain, all over my body, is worse when the seasons change. It sounds odd but that’s it. The heat definitely bothers me the most. Let the air cond. go out, and I get mean as a junk yard dog. The pain is overwhelming. We worked in the yard Saturday, and I’m still paying for that. I have learned the hard way that everything I do – working in the yard, cleaning the house, going on vacation, going to a ball game – will cause pain of varying degrees. However, I’m learning to cope without too much yelling. Vacations - takes about one to two weeks to get over. Cleaning the house - two or three days. Working in the yard - about a week. Life with Lupus is a constant trade off. Hope you have a wonderfu day.
Yes, I also have major problem with seasonal change and any increased work load. Summer and sun brings out the terrible joint problems and of course red skin.
Pain for me, too. So bad yesterday it was hard to walk as I get horrible pain in feet, knees and hips. Hands are bad, too, right now. I’m wondering if anyone has tried these vitamins/supplements I see advertised. ??? My Mom says Tecumerin (spice) helps reduce inflammation. I am starting to sprinkle that on all my meals.
Mother of 3 little kids and its not easy. We are moving closer to family as winters are too much for me and I have noone here to help with kids. I spend entire winter sick and this year I got the inflammation around heart (pericarditis) – familiar with lupus. It was overwhelmingly painful and tiring. I was so tired and breathless I could hardly talk. I didn’t know what that was til Dr. told me! Its scary, but does go away. I’m thinking about plaquenil and take Prednisone off and on, already. Enough complaining.
Try to find happiness in small things and being thankful for my beautiful children and great husband! Life is short, may as well find the good! Best of luck to all out there and I am praying for all of us suffering with this and other ailments that are stressing us that we find peace, love, happiness and a cure! Take care. Michelle.
nanny lupus-cpt2619@lists.careplace.com wrote:
Regarding gardening…Be sure and use Avon Skin So Soft to protect areas that a tick can attach onto you. I had gotten an infection from the bite and had to go to the hospital for an antibiotic asap.
Things like that scare me plus then if I use a shovel or pull out weeds, my joints and bones hurt.
If anyone goes on vacation, ask your doctor for a perscription for an antibiotic.
To Missy,
I wouldn’t take any vitamins or supplements without the knowledge of your doctor. First of all, they may not be FDA approved so one really doesn’t know what the heck is in them. Also, some meds do SAY not to take them with certain meds.
Why not go into the drugstore and ask the pharmacist if there could be any interaction with the meds you’re presently taking. With lupus, even a preservative could be a problem.
Also if flying on an airplane, don’t forget to close the shade if you’re sitting next to a window.
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I have gotten those brown patches on my face also with the rash so my face is two toned but other than that my reaction to the sun is pretty much contained to my face.Although the heat and humidity plays awful on my joints and my muscles. Someday the pain is awful. I am not sure half of the time if it is my fibro or lupus.
Whateverit is I am tired of all of this and I have a alot more years to go through before I am done!
Donna
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