Just wondering if anyone else has these particular issues? I am right back to flaring after only a few days of feeling pretty good. Getting tired of this!! I’m hoping it’s just due to the season changing. We’ve had a lot of fog and damp weather.
I’ve also had some issues with the pupil on one eye. I was diagnosed with Adie’s Tonic pupil about 10 years ago. The only issue I’ve ever noticed is a bit of light sensitivity on overly bright days and one squinting eye in pictures taken with a flash. I’ve never actually seen my pupils be different sizes and kind of thought it was a mild case or something. I’ve been having migraines lately, and my bad eye has felt a little odd (like it was droopy but when I checked it was fine). The last few days I have been able to see the difference in my pupil size and the bad one has been kind of cloudy. I did some checking online and apparently it is a progressive thing and does get worse over time! You would think the eye dr might have mentioned this!! I haven’t had an eye exam since the dx so I think it’s time to get it checked again. I wonder if the sudden worsening of it is due to thing flare? It’s sometimes thought to be a SLE symptom with the immune system attacking the optic nerve.
I go to the doctor on the 28th. Hopefully I’ll get it all sorted out before it gets any worse!
I posted a response to this last night but now I don't see it. hmmm. it was called lions and tigers and oh my eyes---or something in honor of your own word paly---but it wasn't very informative--my response that it.
just wanted to let you know I read it and actually have had the same problem all my life---only it does not casue any pain for me. I hope you find out all you need to know after your appointment. let me know, ok!
You sent it to my inbox! So I did see it... thank you! :)
Well I can't say I have any major vision issues. I have had migraines for years so they aren't a new symptom either. Although the frequency had lessened over the years, it now seems to have increased again. I tend to notice the cloudy vision after bright light, lasts maybe 5 minutes or so then fades. Maybe cloudy isn't the right word, it's kind of like white spider webs that float around. Just in the one eye though. I'm more concerned about the weird sensation and the fact that now it's visible at times.
Apparently it's pretty common for people to have two different sized pupils... the Adie's causes the eyes not to respond to light properly and to focus slowly and really jerky (iris spasms closed). From what I've read online the pupils can actually get "stuck" open. Let's hope that doesn't happen!
Yeah, that would be hard --to have permanently wide pupils...especially if you are already sensitive to light.
Thank God my migraines finally got better. I was literally debilitated for three out of four weeks with pain. And then the pain free week I felt completely disoriented.
which reminds me of something I am curious about:
Do you think that Lupus migraines kill brain cells bc of the intense inflammation?
I started wondering about it bc I DID feel so disoriented after those migraines...and the place inside my head when the inflammation was. here is a cool site if you want to get a good view of anantomy http://www.healthline.com/human-body-maps/head#5/9 ---anyway, i could feel residual pain there for a few days after each attack...so I have a lot of sympahty and empathy for migraine people. ttyt
Interesting post, recently, a car hit the side of my car and the doctor stated I had Spondylitis, according to the x-ray, I wonder if this new diagnosis is a result of the lupus and not the car accident.
Oh THAT sponydytis! I have that too. Once when I went in for a killer migraine --before diagnosis—they x rayed me and said i had it. i didn’t thought it just meant my back was oddly shaped–was too sick to think to ask more
Spondylitis in arthritis in the vertebrae and sacroillitis is arthritis in the joints where your hips connect to your back (either side of your lower back/ upper part of your posterior). I have both with the sacroiliac joint being the worst. Are these uncommon in SLE?
I would think the SLE…I think it takes a while for arthritis to develop from an injury. I’m not a doctor though so who knows! LOL. Good question to ask next time you’re at the doctors though!
Unshoreandscared said:
Interesting post, recently, a car hit the side of my car and the doctor stated I had Spondylitis, according to the x-ray, I wonder if this new diagnosis is a result of the lupus and not the car accident.
I’m not sure if Lupus migraines do or not. You’ve been having a lot of issues with migraines. Are they going to run any scans or anything? Maybe a referral to a neurologist would be beneficial.
janice said:
Yeah, that would be hard --to have permanently wide pupils…especially if you are already sensitive to light.
Thank God my migraines finally got better. I was literally debilitated for three out of four weeks with pain. And then the pain free week I felt completely disoriented.
which reminds me of something I am curious about:
Do you think that Lupus migraines kill brain cells bc of the intense inflammation?
I started wondering about it bc I DID feel so disoriented after those migraines…and the place inside my head when the inflammation was. here is a cool site if you want to get a good view of anantomy http://www.healthline.com/human-body-maps/head#5/9 —anyway, i could feel residual pain there for a few days after each attack…so I have a lot of sympahty and empathy for migraine people. ttyt
Thank you Anne! That was very informative. There are probably quite a few of us that need to pay better attention to proper nutrition! (including me ). I am very good with making sure I get the right amount of dairy products because the doctors warned me that I had “significant demineralization” after a round of xrays. My doctor gave me a lecture about the importance of calcium to prevent having brittle bones later. He really stressed the importance of increasing the calcium in my diet and said if I didn’t he could prescribe calcium pills. That really stuck with me so I do pretty good with that aspect but could definitely improve other areas of my diet!
Ann A. said:
Sacroillitis or arthritis of the sacroiliac join is not uncommon in lupus. One of my pain management physicians once said, “lupus loves the sacroiliac joint.” It is extremely painful. I have used almost every conservative treatment available (heat, ice, acupuncture, chiropractor, and steroid injections). Now I get the nerves that lead to that joint ablated (burned with radio frequencies) about once a year. It makes my life livable.
Spondylitis or arthritis of the spine is not uncommon, even in the general population. I have degenerative disc diseases, facet syndrome, and spinal stenosis. The docs and even the people at http://www.lupus.org claim that this is not caused by lupus. They say that it is usually like osteoarthritis - the result of wear and tear - that everyone develops to some extent as they age. It can appear earlier in people with congenital scoliosis (curvature of the spine) and people who have bones that are soft because they are deficient in things like vitamin D and calcium. So it becomes really severe in people whose nutritional deficiencies have lead to osteoporosis.
I truly wish that I had paid much more attention to nutrition when I was younger. I was so distracted by the symptoms of my lupus (the joint pain without degenerative changes, the lung inflammation, the inflammation of my heart sack, etc.) that I didn’t pay enough attention to the chronic diseases that develop and become worse in people with poor nutrition (the high blood pressure, the type 2 diabetes, the high cholesterol, the changes in bone density). Oh well, hindsight is always 20/20. So now I am facing another surgery because I did not pay attention to aspects of health and wellness outside of lupus.
It was a while ago…he said the best way to ensure I was getting enough calcium was with 4 servings of dairy every day (I believe dairy has vitamin d as well?) and if I didn’t think I would be able to get 4 servings a day he would prescribe calcium pills (which I assume as a perscription, would have the vitamin d?). I am aware of it though and it hasn’t been mentioned again so I assume later xrays were good. I just checked the coffee flavored milk I drink (I hate white milk and am not really crazy about chocolate!) and it contains 50% of your daily calcium and 100% of your daily vitamin d. I drink 2 of them a day so I’m covered!
Ann A. said:
Hey Roni,
Did the doc who talked to you about calcium also talk to you about vitamin D? I was getting plenty of calcium but not enough vitamin D. Our bodies don’t use calcium properly without a sufficient amount of vitamin D. I learned this the hard way. Because of my vitamin D deficiency, I developed “osteomalacia” - which is what they call rickets in adults. So I learned the hard way that it takes calcium and vitamin D to prevent osteopenia, osteomalcia, and osteoporosis. At any rate this is why most calcium supplements also contain vitamin D.
I can’t get the amount of vitamin D that I need from diary products. i have to take supplements. Good luck with the bones and joints in your spine. I am headed for spine surgery soon.
Roni said:
Thank you Anne! That was very informative. There are probably quite a few of us that need to pay better attention to proper nutrition! (including me ). I am very good with making sure I get the right amount of dairy products because the doctors warned me that I had "significant demineralization" after a round of xrays. My doctor gave me a lecture about the importance of calcium to prevent having brittle bones later. He really stressed the importance of increasing the calcium in my diet and said if I didn't he could prescribe calcium pills. That really stuck with me so I do pretty good with that aspect but could definitely improve other areas of my diet!
Ann A. said:
Sacroillitis or arthritis of the sacroiliac join is not uncommon in lupus. One of my pain management physicians once said, "lupus loves the sacroiliac joint." It is extremely painful. I have used almost every conservative treatment available (heat, ice, acupuncture, chiropractor, and steroid injections). Now I get the nerves that lead to that joint ablated (burned with radio frequencies) about once a year. It makes my life livable.
Spondylitis or arthritis of the spine is not uncommon, even in the general population. I have degenerative disc diseases, facet syndrome, and spinal stenosis. The docs and even the people at http://www.lupus.org claim that this is not caused by lupus. They say that it is usually like osteoarthritis - the result of wear and tear - that everyone develops to some extent as they age. It can appear earlier in people with congenital scoliosis (curvature of the spine) and people who have bones that are soft because they are deficient in things like vitamin D and calcium. So it becomes really severe in people whose nutritional deficiencies have lead to osteoporosis.
I truly wish that I had paid much more attention to nutrition when I was younger. I was so distracted by the symptoms of my lupus (the joint pain without degenerative changes, the lung inflammation, the inflammation of my heart sack, etc.) that I didn't pay enough attention to the chronic diseases that develop and become worse in people with poor nutrition (the high blood pressure, the type 2 diabetes, the high cholesterol, the changes in bone density). Oh well, hindsight is always 20/20. So now I am facing another surgery because I did not pay attention to aspects of health and wellness outside of lupus.
I have SLE, but my rheumatologist is also testing me for ankylosing spondilitis, another rheumatic autoimmune desease. I hope you're planning on seeing a rheumatologist, not a general practitioner, as rheumies are the experts on AS and know all the latest treatments. My eyes are also very sensitive to sunlight, so I use prescriptioin skiing sunglasses whenever I'm outside (I live in south Florida where it's always sunny). AS can be as debilitating as SLE, but the pain is primarily along the spine and neck, particularly stenosis of the lower spine. In my case, my crippling lower back and neck pain, plus problems like costochondritisand intestinal problems, which don't typically come with lupus but are common with AS, are the reasons she's checking for it. AS is treated with some of the same drugs as is lupus, including some of the biologic infusions like Humira, etc., so the progression of which can be stopped as with lupus. Good luck with your doctor...I'll light a candle for you until then.
My appointment is just with my GP. I have not been to the rheumatologist in years. It takes about 6 months to get in to see the rheumy here. My dx is psoriatic arthritis (I only have 3 Lupus criteria so don’t have “full blown” lupus yet according to the rheumy). When the sacroillitis first reared it’s head I was sent to a rehab doctor because I couldn’t stand up and my GP could get me in there faster. The rehab doctors only job is to get you functional again. They don’t do diagnosis or anything…but you can get into them fairly quickly. They did ultrasound treatments to my sacroilliac joints and Increased my NSAID dosage and the combo seemed to help after about a month. They had mentioned that the sacroiliac joints can be fused together to stop all movement in the joints if it continued to be a problem (luckily it didn’t come to that!) I’m going to get my GP to refer me to get my eyes checked again and possibly to the rhuematologist too.
pjarden said:
I have SLE, but my rheumatologist is also testing me for ankylosing spondilitis, another rheumatic autoimmune desease. I hope you’re planning on seeing a rheumatologist, not a general practitioner, as rheumies are the experts on AS and know all the latest treatments. My eyes are also very sensitive to sunlight, so I use prescriptioin skiing sunglasses whenever I’m outside (I live in south Florida where it’s always sunny). AS can be as debilitating as SLE, but the pain is primarily along the spine and neck, particularly stenosis of the lower spine. In my case, my crippling lower back and neck pain, plus problems like costochondritisand intestinal problems, which don’t typically come with lupus but are common with AS, are the reasons she’s checking for it. AS is treated with some of the same drugs as is lupus, including some of the biologic infusions like Humira, etc., so the progression of which can be stopped as with lupus. Good luck with your doctor…I’ll light a candle for you until then.