At last I know what I have !!!

[Nemofin]

After a year and a half of mind maddening tests I have half an answer. I just hope they can save my eye sight and find the other puzzle piece. Does any one else have the on set of bad eyes too ????

[bluebell99]

Hello and welcome to our friendly fibro forum where you can get advice, support and help with the odd chuckle in between.

Have you seen our Mother Site fmauk.org ? Here you will find helpful information, guides and links.

You haven't said in your post what it is, that is the problem for you. Although fibro does affect the eyes of some sufferers I am not aware of anyone losing their sight through fibro.

It is true however, that the eye muscles become weak and tired more quickly and often double vision can be a problem. I sometimes use glasses with a prism on one lens to help with this.

There may be something about this in the Topics section in blue on the right, under Symptoms and Treatments.

The Pinned Posts on the right will give you guidance on finding your way around the forum.

I wish you well and hope you get a firm diagnosis soon.

Kay

[Janet28]

Hi Nemofin and welcome to our wonderful forum ☺I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you & talking to others at different stages of their lives with Fibro & learning from their experiences.

It does help with the whole process & i wish I had found the site years ago. I have had Fibro for nearly 30 yrs & I'm still learning about it, like we all are.

I'm sorry you are having problems wI th your eye sight. I'm afraid a good many people have problems wI th their eyes and its very difficult to get glasses because of fluctuation in vision. Eyes are very sensitive to light, I cant drive at night now. Anyway ii see you already have some good advice which I can't really add to, just wanted to say Hi.

Peace, luv n light

Jan x

[rosewine]

Welcome to the forum. Fibro can do strange things to our eyes one day with my glasses I can see perfectly well and on another day my eyes seem really strained and blurry. I am having them tested next week but won't be surprised if my struggle is fibro related. Have they said what your problem is?x

[TheAuthor]

Hi Nemofin

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I have quite poor eye sight due to my Fibro and as both Janet28 and rosewine say it can affect the muscles of the eyes. However, as bluebell99 says, I have never come across anyone going blind due to Fibro but it would be interesting to hear form members whose eye sight have been affected to ascertain the degree of eye problems it has caused?

I want to sincerely wish you all the best of luck my friend, and please take care of yourself.

All my hopes and dreams for you

Ken

[Nemofin in reply to TheAuthor]

Thank you all for being so welcoming, I have got nerve thining of the eyes and as I am now going colour blind too with 80% loss of vision in one eye and now the degenerative stage of my retinas in both eyes. I am waiting for my genetic tests to come back but that will take 6 months to get the result. But my neorolgist has now confirmed fibro I now have no idea what to with this diagnosis as all I really would like it to not fall over all the time and get my self well to run round with my children as they miss me being so full on. Again I really am thankful to all your replys.

[Hidden in reply to Nemofin]

Hi me again- is fibro affecting you all over or just your eyes giving off pain? I think your opthamologist meant the muscle in your eye has fibromyalgia but I doubt its that causing your sight to go, that's probably something else, is he going to continue seeing you for further tests and advise?

[Nemofin in reply to Hidden]

Hi thanks for replying, I have fibo down all my left side which leaves me with little balance lots of pain and a left arm I can hardly use. The specialist has done laser imaging to check my eye nerves and it's them that are thining not the muscles, and on my ct it shows my retinas are starting to degenerate which is causing the colour blindness and might blindness and now the problem is my retinas. The pain in my body is like everyday my bones are very slowly being broken. I do also get ocular migraines which cause me to be sick until I can just lay and close them. Yes I get send in London every two weeks fir my eyes. But was not sure if it would all be liked ? But I have been seeing a special pain clinic every 2 moths to get on top of my pain in my body .

[Hidden in reply to Nemofin]

Hi again- I have right sided weakness with mine, I do find the excercises harder to do for that side.. About the bones??? Have you been checked for osteoporosis?? May I ask how old you are? I,ve been advised to restart HRT to protect me as I am osetpeanic.

[Nemofin in reply to Hidden]

I am 39. I used to be very fit and ran 3-4 times a week but now I seem to find even walking far without loosing my balance the hole time very hard. Sometimes I look like have spent most of the day in the pub... the neorolgist is sending me to a rheumatologist, not sure what they can do ? Any ideas .

[Hidden in reply to Nemofin]

I think Rheumo doc will help you a lot, he might arrange a dexa scan to check your boner density,he should take bloods that a g.p doens,t because of the costs of getting them explained.. he might arrange some hydrotherapy if poss but you need some physio input to make your muscles stronger.. I lost my balance when I was on some medication which I weened off with docs help.

[Nemofin in reply to Hidden]

They have said I loose my balance as I have very little touch sensation all down my left leg and can't really feel my right foot so can't feel the ground. At least in the winter I get to cover my cuts and scrapes from falling over. I fell over in the London Underground two weeks ago .... very embarrassing.

[Hidden in reply to Nemofin]

That sounds like your neuro docs department to ascertain whats going on there, but your muscles soreness/weakness needs a rheumo..

[TheAuthor in reply to Nemofin]

Good luck my friend

[uggycat]

Hi everyone a few weeks ago I went to have my eyes tested so I could know what strength reading glasses to buy, I posted on here a few weeks ago about this. I was sent to see specialist at local eye clinic, because optician saw something on my eye test. The specialist did some more tests, and I have now received a letter to have more rigorous tests on my eyes at local hospital. in the letter I received , it did mention what she had found, Anyway when I get some more information on what it might.....could......is,.....be I shall post what the prognosis is. xx

[Hidden]

I can,t see much about you on our Forum Nemofin- would you say what it is you now know you have? Yes I get a tired eye with fibro it is the muscle and I have taken to wearing transitional lenses In my specs to keep to minimal daylight exposure. I just take paracetamol for this pain, but I,ve noticed I,m getting "Occular migraine " recently

[Matrix]

It's quite often effects the eyes as in having to have your prescription changed more often . Hope that helps .

[Tess71162]

Hi

I have recently diagnosis of fluid behind my retina called an Eye Pit which could cause a dislocated retina and apparently have had this condition before I was born - I'm 54 added to this I am going colour blind! Not sure if this coincides with fibro but double vision and problems began worsening from that being diagnosed as having fibro in 2014. Hope you get advice and help.

Tess