Hi everyone, im Sue & this is my 1st post 😀
I was wondering if anyone on here has Fibromyalgia, do they suffer with stinging/burning eyes & how do they deal with it?
I have not been diagnosed yet but am seeing my lupus consultant tomorrow & going to talk to him about it as i seem to be experiencing a lot of the symptoms that i have read up on.
Hiya Sue
Yes I get stinging, dry, itchy eyes and use Hypromellose drops and Lacri-lube eye ointment. Like you have Fibro/SLE with dry eyes etc being a symptom of SLE.
Hope you get some productive news tomorrow and welcome to the site.
Keep in touch
Debs
Xx
I wouldn't say a word about fibro. They basically think it is some sort of psychological disease and will start attributing every symptom to it. I was diagnosed with lupus and fibro, which at the time meant my muscles hurt and I had trouble sleeping. When years later I went to a rheumy, she wanted to see if I really did have fibro and put me on a prednisone trial. Fibro symptoms gone (except for sleep). Methotrexated--fibro symptoms gone.
There is no good treatment for fibro, anyway.
Plus, they throw any symptoms women have more than men into the "complex," so anyone with rheumalogical symptoms is bound to have fibro symptoms as well.
If you want to dramatically decrease the quality of your health care, ask your rheumy about fibro. And that goes for ALL of your healthcare--heart attack--fibro--stroke--fibro, cancer --fibro.
AnnNY is absolutely right. Her experience unfortunately mirrors mine Fibromyalgia is misused as 'code' for neurotic.
I came close to dying from fibromyalgia this year - ie. preventable lupus nephritis / pancreatitis,
despite all obvious evidence that I was very very ill with Lupus.
My Rheumatologist, unbeknown to me was utterly fixated on fibromyalgia and was passing on unsubstantiated comments regarding my psychological state to every GP I saw. One GP cut me off before I could say a word to her, made me stand up - felt for some fibromyalgia tender points - and as I was sitting back down from this to explain why i was there she walked out on me saying " l have real patients to see ". I was also told I was neurotic for Dr. hopping - ie trying to save my own life.
Never go looking for a fibromyalgia diagnosis if you have Lupus or any other serious illness -especially if you actually want medical treatment.
Sexism and discrimination is alive and well.
(Apologies Sue. Bit of a Gothic reaction to your first post)
Ask about Sjogrens instead.
I'm with AnnNY. I have had lupus for more than 25 years. I think I may have some aspects of Fibro now too although I sleep extremely well and don't have chronic widespread pain. Just like you, I wanted to pour everything out to my Rheumatologist but did lots of research first. Overwhelmingly I was assured that the majority of .doctors are unsympathetic about Fibro as it is not considered life limiting. Treatment options seem to include self help, lifestyle and pain relief which should be available to you with an existing dx of Lupus. I don't know that a dx of Fibro will be to your advantage.
I kept quiet in the end and I'm glad that I did. Good luck with your rheumy, whatever you decide x
I use the cheapest artificial tears, you can get them over the counter at any pharmacy (Asda) is the cheapest. Keep them in the fridge. The relief is fantastic
Have you been tested for Sjogren's Syndrome? This is another autoimmune condition which often overlaps with lupus. It usually presents with dry eyes and/or dry mouth.
Yes I have the same thing and I was diagnosed with Sjogren Syndrome excessive dry eye and mouth. That is when your tear ducts are clogged and saliva glands are clogged. I pray you don't have this problem cause it's very painful. Good luck
Hi, Sue and welcome! I have UCTD which has lupus, sjogrens and other mixtures of auto immune conditions mixed in. I have artificial tears prescribed, which really help, but have to say that I sadly agree with the others, that fibromyalgia appears to be a very poor relation to many physicians. Don't be afraid to stand your ground and let us all know how you get on. I personally have found that blue tinted lenses, (even if you don't require glasses) have helped enormously with sore eyes, especially with fluorescent lighting, which irritates my eyes a lot. Could be worth mentioning if you suffer from photosensitivity at all.
Good luck , xx
Hi everyone! Thank you for all your comments! ☺
Well, I went to my rheumy today & talked things through, including a brief mention about Fibro. He even said himself that, even though I am showing symptoms, we don't want to go down the road of diagnosis of it as everything would be pinned to it rather than concentrating on the Lupus.
I will definitely get some artificial tears, thank you!
I have not been tested for Sjogrens but will mention that to my rheumy when I visit him next in 6 weeks time. By that time I would have had an Opthalmology, orthoptic & MRI appointment.
I am also suffering with the 'full feeling' & 'pinching' feeling behind my face. Has anyone got any advice on this please?
Thank you all,
Sue xx
I was tested positive for dry eye. Dr. Was going to give me medicine. I said no thank you, i will find something naturally. I take 3 tablets of thera tears (fish oil and flaxseed oil) once a day. My eyes are better. I take the dry eye relief natural drops too if needed. The thera tears works well.
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