I have severe fibromyalgia but also have facial neuralgia and regular migraines. I a in permanent pain, cannot walk without wanting to cry, hands are crooked and almost useless . Since a bad fall I also have horrible back& neck problems.
I tell you this because I want to show that I live with pain & just try to cope ( what else can we do?)
I have poor vision since a TIA 7 years ago and although my eyes are so painful I have been told that everything seems normal but yesterday after a day of stabbing eye pain, I lost my vision in my right eye for about 20 mins. I suppose I should have gone to hospital, but what's the point? How bad do things need to be before I ask for help?
I live alone & try to stay positive, which of course isn't easy because of the pain but I hate feeling the docs think I'm moaning
Written by
cobweb
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13 Replies
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Hello cobweb
BOB here
No-one should suffer pain no matter how old we are, your GP is there to provide you with a pain suppressed life and if possible assist in providing you with some form of respite, from some forms of onerous condition
You are saying that you had a TIA and now you are loosing your eyesight intermittently You need to have that looked into, I would never want anyone to suffer this no matter how old or young you are
Please arrange too see the GP tomorrow and have a chat, He/She would expect to hear from you if you are having so many problems. Let us know how you get on
You need to get help now, trigeminal neuralgia is one of the worst pains imaginable ( they used to call it the suicide disease ) I am on a combination of pregabalin and oxcarbazepine which helps a lot .
I also have chronic back,neck and knee problems but if I have breakthrough pain from TN I take MST and/or MST in liquid form.
Agree totally with Bob and Sue. No one ever has to be in as much pain as you. Get to your GP asap.
Having lost my sight almost 30 years ago (at 31) with a rare hereditary gene - age doesn't pick its bed fellows. You need to get to see an optician too and referral to specialist. Sight loss, they tell me, is the most debilitating thing to happen to anyone. You are not going to let that happen to you.
There is help so go get it. Meantime much support from here and us all.
So sorry to hear of all your pain. I too have multiple chronic pain in my face, head and neck plus I am losing sight in one eye - all due to surgery for cancer to save my life. On bad days (which are many) I console myself that I am alive! I have seen two grand daughters born and although I suffer immense loneliness I am blessed with life. During the dark months I find taking vit d helps the depression.
Try to find something positive to think of every day.
Well I've suffered with cervical spondylosis, patellofemoral arthritis (kneecap arthritis) and the worst pain of all caused by both and thats serious neuropathic pain syndrome and its this one I fear as normal pain medication does zip, it goes through opioid pain med's like they're not even there, I've had some luck recently with self medication so after 25 years of it I have some defence now but its not perfect but its better than what the medical fraternity could offer.
But in my view pain suffered by someone else is generally greatly under valued by people not suffering from it as they generally equate it to normal pain like tooth ache or a head ache which isn't anywhere near what i have to deal with daily, Ive given up trying to explain how it feels so I try and explain it this these days, Q) biblically what is the description-definition of hell/purgatory?, A) a permanent state of pain torment/suffering, well that's what I'm already in as I have this 24 hours a day and leave it at that.
Visit Gp, ask for ot assessment, try blind society - they run a buddy scheme
Although with the illnesses you have pain will always be there, it is obvious you have an extreme flare up which requires medical care and assessment, social services ought to be able to assess your care needs once this is done as you live alone, maybe you need some sort of help as pain restricts abilities as well as bringing you down emotionally. Please seek help and support every best wish that things get a little easier for you soon.
Cobweb! I have replied on the Fibromyalgia site to you earlier. Don't bother with your GP if you cannot get an appointment today, and if he says nothing is untoward or does not refer you further you must get to an eye casualty department or an optician asap. It could be anything, but sounds like a retina problem, and if you delay it, you could loose sight in that eye. Mention retinal detatchment to the GP and see what they say if yo are going today, unless he can come up with something else that sounds plausable. My GP said it could be migraines, but I actually had a retinal tear. I ended up going to eye casualty and they told me I should have gone straight to them instead.
I also have facial pain and migraine. There are lots of reasons why people might temporarily lose their vision, including it being part of a migraine, but it is worth getting it checked out if it's a new symptom.
My eye gets really painful and blood shot when I've got a migraine. I find warming up a heat pack ( a nice soft one) in the microwave and holding over my closed eye helps soothe it.
Please ask for help. If you don't tell your GP they won't know how bad you feel.
like you i am in lots of pain, its hard sometimes to keep going to the dr's, i could go every day with something different, and you do feel like a burden. ive tried lots of pain (supposedly) killers very little helps, and been to A&E a few times then sent home the following day and told to carry on its a vicious circle, but when it comes to your eyes keep going until they do something, ive noticed you don't get to see the top man/woman straight away all you seem to get is underlings or trainee's don't let them put you off. i wish i could have written you a more cheerful reply, but alas this seems to be the way it is.....take care
See your gp and get some help but also if it happens again get to the closest optician I did this with my son when he suffered sudden sight loss and the optician watched his sight return and wrote an invaluable report for the gp.
Do not suffer alone you have the right to live and have a standard of life so please please get some help.
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