NeuroTalk Support Groups - Crps sunlight, and uv lights

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Crps sunlight, and uv lights

Does anyone experience sensitivity to sunlight and fluorescent lighting. My husband can not go out in the sunlight without the CRPS going way out of control. Even on a full moon. I was wondering if anyone else experiences this issue with CRPS or RAD

I find it really interesting you raise this topic. It hasn't come up much though I vaguely recall reading someone write about this very thing here or possibly elsewhere. I just wanted to validate your husband's experience.

Sunlight is so powerful as I am always reminded when walking. The difference in skin surface temperature between sun and shade is impressive and I can see where this could trigger some people. The UV may very well be doing something. I have noticed that my affected area will redden in the sun in a blotchy sort of fashion even if it is elevated. So something happens, I just don't know what....

I'm the opposite I love the sun, it warms my cold limbs up, but humidity and I don't get along, it causes more swelling and pain, could it humidity raising cane with him?

Quote:

Originally Posted by wallc1 (Post 1200049)

Yup. Extreme sensitivity to sunlight and heat (even thru windows) - causes major flare-up and sickness. Fluoro lights don't seem to bother me tho. I got no advice for your husband. I've become a vampire - only going out after sunset. :o

Just a friendly reminder about Vit D which is important for nerve health. Deficiency is associated with chronic pain.

Getting enough Vit D can be a challenge. Mine was low even with a multivitamin and regular sunshine and my neuro asked me to supplement. If you aren't getting much sun (or even if you are) checking your blood level may be a good idea.

:hug:

Quote:

Originally Posted by Littlepaw (Post 1200890)

I have a lot of trouble maintaining a vitamin d level in the normal range.

I found a great app called dminder. It tracks your exposure to vitamin d via sunlight as well as any supplement and your lab levels.

Also...I was originally started on a vitamin d prescription for 50,000iu vit d2 twice/weekly. In actuality, over the counter vitamin d3 is absorbed better. I take 5,000iu every night when my level is low. It usually only takes about 6 weeks to get it in a good range. (and I run very low)

Quote:

Originally Posted by ShaggyChic_1201 (Post 1200857)

Thank you and yes we have become vampires, as well. bless you.

Quote:

Originally Posted by wallc1 (Post 1200049)

Yes! I've had RSD since I was 14 and I'm 24 now. My RSD is the most under control that it's been right now since the onset of my symptoms and I've been able to walk for the past 4/4.5 years or so. Even then, I find that I still deal with issues regarding the sun! When I had my first major setback when I was 15, I actually had stroke-like symptoms after being in the sun for a little too long I guess during the summer. This then lead into in a hand of mine contracting and my right leg having weird reflexes and spasms.

Even now though, I try to avoid the sun as much as I can. If I know that I'll be out in the sun, sunscreen is a must (high spf). I'm kind of weird in that I actually don't feel heat very well (not sure how normal this is with RSD, but RSD is known for being a bit abnormal, so I've stopped questioning it. I'm hypersensitive to cold still at least. Anyway, I have to be really careful from that standpoint since I sometimes don't know if the burning pain I'm feeling is normal RSD pain or if a sign that it's something more, especially since sweating isn't really a good indicator for my body with if I'm in the sun for too long.

I have to take a ton of vitamin D daily per my doctor's orders since my levels are in the tank if I'm not on it.

I don't think that there's any sort of "normal" or "abnormal" things with RSD anymore. I've learned to stop questioning it, but just know that your husband isn't alone in regard to sun sensitivity!

Pain, the gift that nobody wants.

:D:D

Quote:

Originally Posted by nikmcjo (Post 1202973)

I'm kind of weird in that I actually don't feel heat very well (not sure how normal this is with RSD, but RSD is known for being a bit abnormal, so I've stopped questioning it.

:Off-Topic:

I read an interesting book about people who have leprosy. It's not the disease that causes the horrible disfiguration, but rather the fact that they cannot feel anything. Without pain to tell them to stop, they don't alter their walking gate because of a blister, or realize they've pinched a finger someplace. The wound gets infected and often lingers that way for a long time. The body actually winds up reabsorbing the infected bones, so that fingers and toes get shorter. The title of the book was aptly named: Pain, the gift that nobody wants.

In the case of PN and RSD, pain isn't a good indication of body harm, but it was a good reminder nonetheless that it's probably better to have too much pain than none at all.

You may now resume your conversation :D

Even sunlight through a window makes my arm feel like it's been dipped in petrol and set on fire