Read Tog’s post & heard from several of you, inviting me to share. Guess I don’t need to know the answer to share. I have RA so I already have the tiredness &pain. Last rheumy suggested dryness was from pain meds. But I never go anywhere without water, sipping it all day, every day for years. Pain specialist is sending me to a neurologist, since the type of headaches I get, occipital neuralgia, can include extreme sensitivity to ligh(s). See the 1month new rheumy on Monday; neuro in early September. Will tackle possibility of sjogren’s on Monday. But we have so much to do that day. First two meetings were 1hr each. Found a list on “Lynne’s Stories” that says to me, very clearly that SS is a real possibility. Think I might copy &circle all that apply and bring it. Will still see neuro for headaches. I swim inside with sunglasses and a visor. The same in the car and under bright lights. Tired, as usual, to bed soon. Thank you all for being here
Hi Yogatose,
I understand exactly what you're talking about with sensitivity to light, especially bright, or florescent. Strong chemical scents can be extremely invasive as well, many of the products I use are unscented, and when I wear perfume, I only use the tiniest amounts. some people prefer to use a good portion of the bottle daily, and I have no tolerance for it!
I wash my hands constantly and the only thing that doesn't irritate them is Seventh Generation dish soap, I also use it in the bathroom for hand washing.
I'm not sure that there is a way to reverse this sensitivity once it happens, but it surely seems to be a stress response.
I hope everything makes sense, I have a house full of grand kids again, and though I love having them, I get so tired, I get brain dead, well, body dead too actually! Time to go fall down!
Take good care,
SK
Hi Yogatose, that sounds like a good idea, circling the symptoms that apply to you and bringing that with you to your appointment with your new rheumy. I wish you the best of luck with your new medical team and that you find some clarification of what's happening, whether it is Sjogren's etc.
I also have occipital neuralgia and moderate to severe light sensitivity. I can't drive at night due to the sensitivity to the headlights of other cars, I am severely sensitive to flourescent/artificial lights. Being very tired and fatigued/feeling totally drained is also something that I experience daily. Thank you for sharing what's happening for you. :)
I can’t drive @night since 3weeks ago. So much of these illnesses take things away. I try very hard to stay positive, but right now I am feeling overwhelmed. I will, as mentioned by Tog, need to do the elimination plan. Thre were many years I was wheat and sugar free, so I can do it again. Hopefully, that will help with the weight
lilacs said:
Hi Yogatose, that sounds like a good idea, circling the symptoms that apply to you and bringing that with you to your appointment with your new rheumy. I wish you the best of luck with your new medical team and that you find some clarification of what’s happening, whether it is Sjogren’s etc.
I also have occipital neuralgia and moderate to severe light sensitivity. I can’t drive at night due to the sensitivity to the headlights of other cars, I am severely sensitive to flourescent/artificial lights. Being very tired and fatigued/feeling totally drained is also something that I experience daily. Thank you for sharing what’s happening for you.
Hi Yogatose,
I just had to reply to your post! I also have RA but it's secondary to my Sjogren's. Have you been to a dentist or eye doctor recently? They were actually who made me see a neuro and ask specifically about SS. My eye doc said he had never seen such dry eyes and asked if I had Sjorgren's. I vaguely remembered hearing the name in nursing school but that was it. Two days later I went to have my teeth cleaned and the hygenist told the dentist how dry my mouth was and she asked also asked if I had SS. Thank God for those two docs! I had gone without a diagnosis for 7 years. By that time, I had severe neurological problems. It took me 3 more neurologists to find one who treated SS. But now I have a good team of docs to help me. I also have facial and head pain, but it's Trigeminal Neuralgia and Neuropathy. Which I am seriously considering surgery for this September.
I have light sensitivity and don't go ANYWHERE without water. I hope you see this before your appt on Monday. Don't give up! I shudder to think where I would be if that eye doc and dentist hadn't mentioned SS. If this neuro doesn't believe you, try another.
I wish you all the best!! I am so sorry you are going through all this but I must admit it's nice to know that someone else can relate to me. :) Please keep us posted on what happens at your appt.
Take care,
Bels
I have sensitivity to light also, it is hard to drive at night when people don’t turn off their brights until they are right on top of you.
Where do I find “Lynne’s Stories” at? I want to take the list to my Rheumy, and to my new neurologist this week.
Thanks!
Stacie
Aren't there special lenses for people with 'night blindness'?
I've seen these on TV, so you would think that the opticians would also have access to this tint.
Just google …Lynne’s stories. Or maybe Lynn’s. I’ll check it out, let u know if spelling is right
Fascina said:
I have sensitivity to light also, it is hard to drive at night when people don’t turn off their brights until they are right on top of you.
Where do I find “Lynne’s Stories” at? I want to take the list to my Rheumy, and to my new neurologist this week.
Thanks!
Stacie
The yellow tinted glasses don’t work for me anymore. They did before the extreme sensitivity set in
SK said:
Aren’t there special lenses for people with ‘night blindness’?
I’ve seen these on TV, so you would think that the opticians would also have access to this tint.
Wow! I seem to be putting my answers in the wrong places. I’ll get the hang of it
The name of that sight is Lynne’s Sjogren’s Syndrome Stories. It takes me a while to get things right. But, sometimes, I get sooo close. I hope the site is helpful for those of you who asked about it
Right after I typed that I Googled it, and found it. My brain wasn’t working for a few minutes, lol.