Irlen syndrome

[cobweb]

Does anyone know how to get help with irlen syndrome? I'm not dyslexic but my symptoms fit exactly. GP already thinks I'm a time waster!

[bumblebee57]

Hi cobweb, I just googled Irlen syndrome coz I like to know what things are if the symptoms sound familiar to me. I am dyslexic and suspect that I am dyspraxic and now suspect I might have Irlen syndrome too. I can relate to a lot of the symptoms but they could be wrapped up together in my Fibromyalgia, for instance, fatigue, concentration,light sensitivity, headaches etc. Even tho I can read, write and spell ok, I have other symptoms of dyslexia. I read slowly because the words dont make sense first time, I jump from line to line etc. I struggled through school and it wasnt till I did an adult learning course at the age of 50 (55 now) that my problems were picked up, even tho Id had my suspicions for a very long time. I dont think you're a time waster, you know yourself better than anyone and you know when something isnt quite right. So its natural to want to get it checked out. I think some Drs dismiss things like this because of time and money. "Its not that important" but it IS to YOU. I dont want to be labelled "stupid" when I know Im not. Ive been told by the man who tested me for Dyslexia and a Psychiatrist, that Im "more intelligent than I give myself credit for". (But i knew that!!). Perhaps you could ask another doctor about this. Id never heard of Irlen before, so thank you and good luck

[ladymoth]

I don't deny that Irlen syndrome may exist, but the symptoms are extremely diffuse, and are probably experienced by almost everyone with fibro.

The main problem I have with this is that the only available treatment seems to be the purchase of very expensive tinted specs.

If you buy the special lenses and have an improvement in comfort when reading, then that's great - but I would be very surprised if you felt any benefit in your general health.

This condition is not yet recognised by optometrists, tho' it is obviously of interest to educationalists. It's unlikely that your GP would know any more about Irlens than you can find out through your own research, and there is as yet no treatment they can prescribe.

Ah well - a new pair of specs is always good, and might make you feel happier - so you pays yer money and you takes yer choice!

Moffy x

[Ozzygirl64]

It all fits for me too but I know it is down to the fibro and like Moffy I find tinted specs help me with my vision but it does not improve m y health in general. I have a tint in my distance glasses as that is where it gives me most problems. But we can all look into things and think we have things that maybe we do not have. So many symptoms overlap so it makes any diagnoses extremely difficult xxxxx

[Harry1000]

I have recently had an Irlen test. I do not have the glasses yet but during the test I felt really calm, it was weird. I had not realised until I was wearing the lenses how stressed my body was feeling, it really made me feel calm and physically relaxed. Hard to explain. It's a really amazing feeling. I want to know what it feels like wearing the glasses for longer. They arrive in a few weeks.

I had to pay for the test myself. I think it was worth it. You can get the test done all over the UK in different Irlen centres, which are just people's homes.

I saw a brain imaging scan of a lady with Irlen syndrome without her Irlen glasses and then another with them. Her brain was full of yellow patches without the glasses, almost completely full up, but with the glasses on there were just a few small patches. Apparently this is blood flow and it makes your head hot and stressed out. I didn't believe this a lot I have to admit before I had the test, but it felt so so different with the glasses on I actually felt the scans described how I was feeling, like my brain was just cooled down somehow, and less hot and stressed out.

I am also autistic, and a lot of my symptoms overlap with 'Irlen syndrome'. I am not much interested in whether Irlen syndrome is something in itself, but if the glasses help that's enough for me, and they certainly did.

[Lemonadefizz]

Just found this thread by googling "Fibro or Irlens?" as I've been diagnosed with sever Irlens and get my glasses soon, but also saw a consultant yesterday who thinks my widespread joint and muscle pain may well be fibro!

I googled it as I started to wonder if the symptoms were overlapping and looking at this thread they certainly seem to.