Still trying to learn

can someone please tell me how being in the sun can make my joints ache and put me in such pain, lucky me been beggin for a pool for 10 years, finally got one last year put in late in the year and now it is ready to use and i cant get in it during the day without wearing clothes and sunblock, i just dont understand.

Hi Kel,

Maybe its just not time for you to understand.... I just accept that this is the way it is, and the understanding part will come later. Be smart, and avoid the worst time of the day, and get in the pool after 3, when the sun's rays aren't so dangerous.

I'm still in that learning curve myself. How can the sun, which can do so much good, make us feel like a truck ran over us? I spend about an hour outside in volunteer work and end up at home, fatigued,achy (muscle and joints) and what I call "medicine head". Not dizzy exactly, but just "fuzzy". I need a nap of 60-90 min just to recoup from being outside. The one thing I did learn so far is as much I hate to...wear the sunblock and try avoiding the hottest part of the day.

Trisha is right, Kel. You will understand someday and get what your role in life is all about that this disease is going to teach you. I don't walk well at times but I still walk. I am finding out how ignored a person in a wheelchair is and how people will walk right in front of you and you are supposed to stop or they glare at you. I smile and say hello. When they see me stand up at the car they glare at me sometimes. At the local Walmart I have had the opposite experience as there are two workers there that use wheelchairs and one of the things they do is take wheelchairs (the motorized ones) back in the store One man I have had several short conversations with him and he is so nice and so inspiring. He is still getting chemo I found out and we talked about that as he helped me load my car. He told me that he appreciated all my kind words and he always likes to go home and tells his wife about the nice people he meetsand then he grinned and said "and the not so nice people too." So, you will find understanding of sorts even though it is not what we wished for ourselves. Hang in there. Hugs!

Hay! To be honest , I really don’t think there is any help!!! We are stuck with a invader that will not allow us to do Nothing!!! But we (me), will keep fighting to the end!! Hope that you do the same also…Beverly L.

Hi Kel,

I love to swim, it is the best exercise for us. When we can. What I have learned is when you feel good take life twenty steps at a time, don't wait for anything. When your ill, you have enough time to rest believe me. Go swimming at 3 in the shady part of the pool....I do and I live in Vegas....

You will learn to understand your body....and i wish you a good swim,


you can get 50 SPF clothes (surf wear) and swim.

I have done that.

Excellent description. Thank you. I live in FL and have been sick for several years. This is the first explanation that makes me understand.

Ann A. said:

Dear Kel,

The simplest answer that I can come up with points out that we only have one body. In order to understand how the body works we can look at the parts separately, but that is not how they function. The parts of our body do not function in isolation from each other. It is not unusual for damage in one part of the body to have consequences for other parts of our body.

… physiology views the body as a collection of interacting systems, each with its own combination of functions and purposes. Each body system contributes to the homeostasis of other systems and of the entire organism. No system of the body works in isolation, and the well-being of the person depends upon the well-being of all the interacting body systems.

The skin is an organ. It is the largest organ. It is part of the integumetary system. Damage to our skin can cause problems anywhere in our body. Sunlight damages the skin of every human being exposed to it. Most of us know that the UV portion of sunlight can cause skin cancers, some of which are deadly. That is why the American Academy of Dermatology recommends that everyone protect themselves from the sun (UV). So if we can accept that UV rays have the potential to cause death, it might be easier to accept that they also have the potential to cause joint pain and fatigue. UV rays are powerful and can be deadly to anyone. The pain and the fatigue are simply some of steps between sun exposure and more severe consequences.

If you want to learn about this in more detail, a good place to start is with the immune system. Because to some extent the question you are asking is what causes an autoimmune response, what causes the body of people with lupus to experience chronic inflammation. Given that sunlight damages everyone, why does it trigger an autoimmune response in some people? Why does exposure to sunlight produce chronic inflammation in some people?

This is a neat little animation which presents some of the basics about how the immune systems works.

This is a short and humorous "crash course" on the immune system.

Understanding the immune system is the first step in understanding autoimmunity in general and why UV rays (which hit the skin) can cause the chronic widespread inflammation of an autoimmune response.

WOW, i understand completely now, thank you, all of you, i made a few notes, now i can explain to my family and friends why i cant lay out all day now, it has been hard having the new pool and not being able to use it like i thought i could or should, now i am learning what i need to do and just thankful that i have a pool and that i can exercise in this hot/humid alabama weather. THanks again to all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

the pool was so therapeutic to me after i had a stroke. My legs were so weak but my arms were strong, and it felt so good to swim. Love love love swimming!

When people ask, I simply say, "I seem to be allergic to light". This people can relate.