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Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 3/20/2015 11:53 AM (GMT -6)   
Hi everyone. I'm usually in the OA or Fibro forums, but I thought I'd stop in to say hello, and ask a question or two.

I'm in the middle of finding a dx, and was originally sent to a bad rheumy who sent me to a bunch of other places I didn't need to be. Now, I'm starting over with a new rheumy in late April.

My primary is leaning toward Lupus, and really so am I. I have 5 of the 11 criteria, and my symptoms are worsening. I'd think if it was all fibro, I'd be improving some with the meds my primary has me on.

Do any of you get blurry vision?

What about cognitive issues? I get so confused lately.

Rashes. I get the "butterfly" rash, but do any of you get a red type rash on arms in the sun? That's new for me.

I'd really appreciate some feedback. Hoping the new rheumy will really investigate what's going on.

Post Edited (Jake'sMom) : 7/1/2015 7:04:25 PM (GMT-6)


Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/20/2015 12:05 PM (GMT -6)   
Yes, blurry vision can occur for a number of reasons -- inflammation or dry eyes come to mind.

Yes, Lupus and other auto-immune diseases definitely can cause "Lupus fog" or even more serious cognitive issues.

Often people with Lupus are very sun-sensitive, and this can cause a heat or sun rash with sun exposure. It's a skin inflammation and you probably want to avoid the sun.

One way to get a good Lupus rheumy is to locate your local chapter of www.lupus.org... the Drs who are active in the local group are the ones in your area who are interesting in diagnosing and treating Lupus and related auto-immune diseases.

Hope you get to feeling better soon,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 3/20/2015 12:13 PM (GMT -6)   
My appt. in late April is with a doc who is touted as the "super sleuth of rheumatology". I hope she is, because I am complex to say the least. Thank you Lynnwood. You've been most helpful.
Stacey

Fibro, Osteoarthritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/20/2015 3:51 PM (GMT -6)   
Hello, Stacey.

I'm very sun sensitive and have to wear special clothing with protection in it.
I get red all over from the sun and feel sick from it.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 3/26/2015 11:39 AM (GMT -6)   
Hi Joy. I went for a drive yesterday, and the sun caused me to have a rash on my left cheek and my left forearm for hours after I got back to the office. It was sun through a slightly tinted window. I too get tired from just being in it a small amount of time. I get exhausted in stores with florescent lights. I turn off my office lights, and use lamps around me or I can't work all day.

I used to spend hours in the sun at the lake with my husband, so this is one of the new symptoms I first thought was my fibro. I get light sensitivity, and have always had that, but this is so severe. It causes my eyes to ache, and I then start with head and body aches as if I have the flu. I run a low grade fever too. I get "run down" every afternoon no matter what I do, but if I add in any type of UV light, I'm so much worse for wear.

At this point, I don't even care what it is. I just want to figure it out so I can face it head on, and do something about it. I want to improve my quality of life if possible.
Stacey

Fibro, Osteoarthritis

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/27/2015 8:52 AM (GMT -6)   
What lights typically are UV and which aren't? There are some places where I walk in to, and I feel like I can barely stand up. At Walmart, I get so dizzy and strange feeling, but at work, the lights don't seem to have the same effect. Luckily, where I live gets very little sun, so that hasn't been an issue so far.
 
Jake's Mom, I get really bad blurred vision as well, not caused by just lights. I believe I read or someone told me it can be swelling of the blood vessels near your eyes.

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 3/27/2015 1:11 PM (GMT -6)   
Yes, I get blurry vision a lot, and not just when I'm outside. I went to a doctor who specializes in disease of the eye to make sure I don't have an eye disease causing it. He told me I needed bifocals, and he had to idea why I get the pains in my eyes, and the blurry vision.

Florescent lighting puts off UV rays, I know. That's why you feel so bad at Walmart. I can hardly go in there anymore.
Stacey

Fibro, Osteoarthritis

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/27/2015 2:09 PM (GMT -6)   
Walmart is probably the worst offender, but I also think my work and my gym have florescent lighting and I don't feel nearly as terrible there. Maybe there's varying degrees of the amount of UV rays. I will be going to an eye doctor soon because I started plaquenil, but I am also interested to know if they can see any other reason for the vision issues. I can stand the blurry vision, but the dizziness has gotten so bad a couple times that I've though I might fall.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/27/2015 2:48 PM (GMT -6)   
Walmart has skylights in most of their stores. You're getting double doses of UV rays when you go there. Also their lights are of a higher wattage.

UV rays are emitted by fluorescent lighting, sunlight, halogen bulbs, CF bulbs, and tanning beds. Special filters can be places on windows and fluorescent lighting to block UV rays.

I wear clothing with protection built in the block UV rays. I buy them at coolibar.Com , sungrubbies.com , and Columbia clothing.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 3/31/2015 12:13 PM (GMT -6)   
You are so right, Joy. I forgot about the skylights. I'm going to look into these clothing lines. Sounds like it might be right up my alley. Thanks.
Stacey

Fibro, Osteoarthritis

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 4/22/2015 1:57 PM (GMT -6)   
I saw the new Rheumy on Monday. Thorough may be an understatement with her. We started with my childhood, and went from there. lol

She is running new blood work, and said "I'm not quite there with Lupus, but we will see." I have a lot of nerve pain, and we found the reasons. OA is spreading throughout my spine, and causing my right arm to go numb, tingle, etc. Previous rheumy said it was all fibro even though it my pain was only on one side. This doc started me on Lyrica for the nerve pain. So far it is helping, and I'm only on the starter dose.

My rashes, my mouth ulcers, nose sores, and sun sensitivity is pushing her toward Lupus, but fibro can be so sneaky. I really feel comfortable that she will do whatever it takes to figure me out.
Stacey

Fibro, Osteoarthritis

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/22/2015 2:06 PM (GMT -6)   
That's great that you've found a thorough rheumy that you can trust!

Hope you feel better soon!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 7/1/2015 8:18 PM (GMT -6)   
So my rheumy said no fibro. Seemed irritated that the other rheumy dx me with it. He didn't do any blood work at all, and was very dismissive. I've now had one positive ANA, and another neg. one.

I continue to have mouth and nose sores, and had one on the roof of my mouth when I was in the rheumy's office yesterday. It made her say "hmmm". Whatever that means. lol She isn't convinced that the rash on my face is a Lupus rash. She says maybe rosacea.

She doesn't want to rule it in or out at this time. I am fine with that, but a little impatient even though I know these things take time. I really like this doc, and trust that she is being thorough.

I do have other pressing matters such as needing neck, shoulder surgery and a hysterectomy. I'm also severely anemic, so that is an issue needing a solution before any surgery can be done. Doc wants me to concentrate on these issues handled. The pain from my neck & shoulder are pretty consuming.

I am going in for a steroid shot next month, because I have a family reunion to attend, and they help with my joint pain/achiness.

I just wanted to update, and say that I keep up with this forum. I wish you all the best.

Any suggestions or comments are welcome.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/1/2015 9:15 PM (GMT -6)   
Sorry this is taking so long to get you more relief. Some rheumies are willing to try Plaquenil initially to see if it helps, some are more cautious with there approach. AS long as you feel you are making progress and moving forward with someone you trust... it's a good thing!

Thanks for keeping us posted!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/1/2015 9:31 PM (GMT -6)   
Sounds like she's careful in not jumping the gun. Best to be safe until sure.

I hope your upcoming surgeries will do well for you. My brother is practically crippled by his DDD in his neck (C2-C7). His dylesis keeps flushing out his pain meds.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Allisonc7
New Member


Date Joined May 2008
Total Posts : 13
   Posted 7/25/2015 10:46 PM (GMT -6)   
As long as your blood work is stable you don't need to start any major meds anyway. You don't want to be on steroids of course unless you are very sick with abnormal labs. Lupus drugs are pretty major, besides the Plaquenil. Benlysta is still new. Mild lupus can just be watched. As long as you are seeing a rheumy that is watching over you a diagnosis doesn't need to be right now. You can still be followed by your symptoms. You obviously have something serious going on that needs to be monitored. I felt very inpatient with rheumies at first but this is a very complex disease with many twists and valleys. You have time to get it figured out. You shouldn't have trouble finding a rheumy who is willing to try Plaquenil, most are okay with starting a trial.

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 7/26/2015 6:31 PM (GMT -6)   
Thank you Allisonc7. I appreciate your input. I have a great rheumy, and I love that she's so protective of me. She insists that my husband come with me to each appt., and asks him about any changes in me, etc.

I don't want to be on any meds I don't need, but I do get steroids, and they help tremendously.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD
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