Sun sensitivity, pain and other issues!

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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/25/2011 1:50 PM (GMT -6)   
I woke up feeling kind of achy this morning and a little swollen so I went for a swim in the pool, which was cool and felt great. I had on a straw hat, 100spf on my arms and a UV protection shirt. Now, I feel absolutely horrible with joint pain, muscle aches and fatigue. My dermatologist told me to cut back to 200 mgs of plaquenil about 6 weeks ago and boy I wish I hadn't done that. I didn't even use my shoulders swimming but they are killing me. I took 2 advils and now wish I had taken 1/2 a loritab. Might still go take one. Sometimes, it's the only relief I get. And, I do not have the diagnosis of lupus, I just have a positive ANA, slightly positive RF, high sed rate. Doc thinks it is MCTD....

So, how much sun protection do I need to insure I won't feel bad? I didn't have sun screen on my legs b/c I was in the pool. I was outside of the pool for about 15 minutes at the most. Could that little exposure be making me feel bad? Thanx for listening to me vent......I've been really grumpy lately also with back to back UTI's. Does this happen with AI diseases too?
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/25/2011 2:10 PM (GMT -6)   
Sounds like you were already starting a flare and the swim and sun pushed it over the edge.
I make sure every exposed area of my body is covered in broadspectrum lotion (SPF 75). I then wear a SPF shirt with a SPF wide brim hat. If I have to be out longer than 5 minutes I use a 100 SPF beach sunbrella.
Even then I have some issues, but it's managable.
Joy

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 9/25/2011 3:12 PM (GMT -6)   
A little over a year ago a new rheumatologist told me fibromyalgia (previously dx'd 10+ yrs before) was probably the source of the new problems, and advised me to reduce my Plaquenil to 200mg per day, which I did.  about 4-6 wks later I ended up in a horrible flare.  My PC referred me to another rheumy who advised me to get back on the 400 mg and stay on it.  He also said it would have taken 4-5 weeks to feel the symptoms resurge after reducing the dose in the first place. 
 
When I thought back on things, I realized that there were beginning signs of oncoming flare after about 2-3 wks of the half dose.   I just hadn't bothered to add up all the little signs.  You know how it is - you get used to discomfort, pain and fatigue and try to keep in UNDER the radar of your days.  Anyway - sounds to me like perhaps you're dealing with the same thing.  You say your dermatologist told you to reduce your Plaquenil dose - did he say why?  I wonder what your rheumatologist would say, assuming he/she is the one who Rx'd it?
 
I have the same indicators you mentioned (+ANA, slightly +RF, high CRP - with a dx of UCTD- and overlapping symptoms).   I was amazed at how little I thought the Plaquenil was doing - still had fatigue and pain and all the rest, but now I can't imagine where I'd be without it.  Just cutting the dose in half showed me how much it really was helping.  Hope you feel better soon.
 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/25/2011 3:12 PM (GMT -6)   
I usually swim after the sun goes down-:) Ugh! Stepped back up to 400 mgs of plaquenil and ended up having to take 1/2 a loritab too. I feel horrible and ache all over now!!!!! Thanks for the tips Joy!!!! Every time I go out in the sun/outdoors anymore, I get sick like this. I had one rheumy tell me it was because I was more active outside. Whatever..... I know different.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted 9/25/2011 3:48 PM (GMT -6)   
You know your life is odd when you are excited that it raining and over cast so that you can run errands in the middle of the day. I live in SUNNY florida but Seattle is looking better all the time.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/25/2011 4:57 PM (GMT -6)   
I hear that except I think the rain makes me ache sometimes too!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/25/2011 7:09 PM (GMT -6)   
I've felt terrible all this week because of the storms here. I first overdid it last Monday being on the run all day. Tuesday to Friday horrible storms and constant rain caused more achy joints.
Yesterday was the first sunny day and I was still in pain. I managed to drag myself out of the house because my niece and her friend wanted to go to the movies. Woke up this morning still achy. I was going to spend the day resting and napping, but my pharmacy called and told me I had to come and pick up my medication or they would return it to stock and charge me a restocking fee. :P
I drug myself to the pharmacy to get my medicine. Got home and my mom is sick and needs some ginger ale to soothe her stomach. So off to town again to pick up some sugar free ginger ale. No one else was home to get it for her.
I'm sitting here now debating taking my break-through pain killer.
I want to rest tomorrow but I have to go to the big city to see my eye doctor for my eye check up. At least I can rest until 12 before leaving.
Joy

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 9/26/2011 6:51 AM (GMT -6)   
I am out of pain for some reason today but in a horrible mood. I've been having a lot of mood swings lately too. Have a good trip to town Joy.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/26/2011 6:09 PM (GMT -6)   
I went to town tired and was planning to be home by 3pm, just a quick trip of three hours. Wrong!
One hour into my trip I started having bladder spasms. By 2:15 I was feeling horrible! I wound up sitting in the urgent care there begging for relief.
By the time I made the 40 minute drive home I had stopped at every restroom trying to get relief.
I'm now loaded up on tramadol, macrobid, and pyridine debating going into work tomorrow. The spasms have eased and I'm peeing again. I never knew what a relief it is to be able to pee with no pain. :)
The doctor said I didn't have an infection, but is treating it like one.
Joy
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