FIBRO and other things.....

[RaeJ70]

Hi all! ive been suffering with severe fibro for 10yrs+ but in the last 2 years i have also been diagnosed with Myasthenia Gravis, Neuromyotonia, Urticarial Vasculitis, severe depression and Retinal Cone Dystrophy causing me to be registered as severely sight impaired/blind 😭😭😭😭. i wondered if anyone else has developed any other illnesses like mine after having FIBRO? i spend most of my time in bed with severe pain, exhaustion, lack of sleep amongst a million other things and i dont know i much more i can cope with! i had one hospital telling me i was munchausens for 12 months before i went private to another hospital who were brilliant and got me my diagnosis's but im so down and feel like a prisoner in my home with no independance anymore! 😭😭😭😭😭

[Ian123]

Have some eyesight issues, any tips on software for typing messages or reading replies for the severely sight impaired / blind. thanks

[hamble99b in reply to Ian123]

on Windows,if you go into Accessories, there is an option to select "on-screen keyboard" which you can make as big as you need, then use with your mouse. (I use this)

plus you can make the "pointer" bigger.

You can also select the option to have the text read out to you.

there are commercial speech recognition app's too.

I set my screen to zoom to make reading easier.

Do be aware though, if anyone types in block capitols - it shouts those words out - not pleasant

hamble

[Ian123 in reply to hamble99b]

Thanks hamble99b I have the windows settings altered so that the mouse pointer changes colour against the background, use the black and yellow colour scheme with the magnifier.

Typing is a problem when tired I need a magnifier for the keys, memory not good enough for touch typing.

[Crazy_Horse]

Hi Raeben,

What a journey you have had!

I think many people living with FM also, eventually if not immediately, have additional significant health challenges.

Pain, insomnia, fatigue can all become a self-perpetuating downward spiral, rather easily, with so many challenges.

It's important to find a way to put some structure back in your schedule, if possible?

I certainly don't want you to feel this suggestion is insensitive to your personal situation.

If you cannot work on putting structure back into your life, I understand and am very sorry your conditions have progressed to this degree.

If you can possibly grab ahold of some aspect of your daily life at home and try to adopt a schedule for sleep and a schedule for awake time, it may help you with sleep quality (to some degree).

Are you able to get out at all?

Do people visit you, help you with your needs (groceries, meals, attending appointments, socialization)?

Is home health assistance an option for you?

Is it time, perhaps, to obtain more assistance with depression? These illnesses, the associated chronic pain, the lack of adequate support, can all become the source of severe depression. It all then just gets worse and worse, until we can breakthrough some aspect and start to regain some control over the downward spiral.

Have you seen, or have you contacted, your treating physician and is s/he aware of how down you are feeling at this time? It may be helpful for your physician to help you to get a handle on this spiral?

If possible, please look over the Fibroaction Fibromyalgia A-Z guide, as it has some suggestions which are helpful for managing various aspects of FM. Many of these suggestions are helpful, in general. This guide is posted in the "Pinned Posts" section of this forum, on the upper right hand side of the screen.

I hope today is, somehow, a better day for you.

Keep reaching out!

In Support,

Crazy_Horse

[hamble99b in reply to Crazy_Horse]

that's a kind, thoughtful, well put post CH.

I hope it hepls Reuben. I, too, have a form of Vasculitis.

regards,

hamble

[TheAuthor]

Hi Raeben98

I am so very sorry to read that you have experienced such horrid treatment and conditions for so many years, and I genuinely hope that you can find some resolution and relief to many of your illnesses. I do not personally have anything of the degree to which you endure, as I just have an eye muscle issue related to my Fibro.

I want to genuinely and sincerely wish you all the best of luck, and I hope that you can find the answers that you so desperately desire and deserve.

All my hopes and dreams for you

Ken

[RaeJ70]

Thank you all for your thoughtful messages and advice, its lovely to know that there are people out there that can empathise with eavh other! sending soft hugs to everyone! xxx