Applying for incapacity benefit got the ball rolling

[britgirl]

background - severe burning dry eye for about a year, forced to quit career, seen several ophthalmologists (both private & NHS). NHS ophthalmologist wrote me off after unsuccessful MGD (meibomian gland dysfunction) treatment on FML and doxycycline. Applied for incapacity benefit.

Haven't been on for a while and thought I'd post an update. Since being referred back to GP by ophthalmologist I felt I'd hit a dead end. I'd previously applied for incapacity benefit to help with living costs.

In the UK, to claim incapacity you attend an assessment. This is what got the ball rolling for me. The doctor I saw was very understanding, and I was referred to a different ophthalmologist. I'd previously been to Moorfields in London (this was where I was written off), but am now seeing an ophthalmologist in a more local hospital.

I have now had 2 plugs fitted & switched from doxy and already have felt a vast reduction in pain (by about 60%). I also have had blood tests & it's been discovered I have anaemia. I have just started treatment for this, so am not sure whether it's a contributing factor yet.

If it wasn't for my perseverance I don't know where I'd be right now. I don't entirely understand why Moorfields wrote me off without trying punctal plugs ... or any other treatment for that matter. Maybe they didn't understand how much this condition affected me? I am a bit disappointed that I had to apply for incapacity benefit before I was taken seriously, however, I feel it was a necessary step. I really had to emphasise how the constant pain, eye drops, hot compresses and ice packs made working impossible. I remember someone here wrote here that caring for their dry eyes had become their full time job, and this is exactly how I felt.

I have received a few messages, will be reading & responding over the next few days. I thank you for all of the advice and support from members of the forum. I have a followup in a few weeks and will keep you posted.

edit, to add - I also went on a course of amitriptyline but felt absolutely no difference in regards to pain, only drowsiness. I've found one effective painkiller called Diclofenac Sodium (Voltaren). Out of all the painkillers I've tried so far it's been the most successful. Unfortunately it's prescription only, and has many side effects.

[NeedMyEyes]

Just FYI: You can take an eyedrop form of Diclofenac (or actually it is similar to Diclofenac).

Here is the Generic name of the eye drop: ketorolac. also you can take bromfenac.

There is a non-preserved formulation of ketorolac in the US called Accuvail. I have had good luck with it as a pain reliever.

[dijon84]

Sorry to read about your troubles. I've been doing alot of research the past few months to help with eye problems and really thought hard about what makes my eyes feel better or worse. I think I'm coming to the conclusion that for me, there is an underlying health issue and until I solve that, my eyes won't get back to feeling normal. Background to me - 8 days after I picked up an eye infection (in February), I started getting sinus problems. I only started focusing on the sinus problems in the past month since they've got worse. Surely an eye infection would have cleared up within a few weeks of getting it, so I think my sinuses are the underlying problem (think I have chronic sinusitis now). I've had eye discomfort ever since February (think it's 'dry eyes' as I'm getting eye mucus) so I'm really feeling like my sinuses need to get back to normal before my eyes ever will.
Looking back, I wish I'd focused more on my other symptoms apart from what I was feeling in my eyes. I was just so focused on trying to help my eye problems (as it started there for me) that I didn't bring to the attention of doctors my sinus symptoms.
So all I would say to you is think hard about any other symptoms you've had (apart from your eye pain) that you've had over the past year (or more) and look really hard to see if there are any underlying health issues. Hope the treatment for anaemia goes well. All the best, Dave

[irish eyes]

Hi Britgirl

How strange you should post now - I was actually thinking about your circumstances the other day. There were discussions on the radio about the company who conduct these assessments. It didn't sound to be a straightforward process at all; you need to be reasonably robust to get through it. Anyway, I'm pleased that there seems to be some understanding.

So Moorfields signed you off? I was signed off too (not from Moorfields but another NHS teaching hospital). OK, they tried to help but it was more a case of bombarding me with every eye drop they knew about and suggestions to take anti-depressants etc. According to the head of department, I was making a mountain out of a molehill and my problems were as much about emotions as anything else. It shocked me when I read his report. (If only his diagnosis was correct - !) When I eventually self referred to another consultant in the private sector, my eyes had really deteriorated.

I suffered with anaemia for years but no-one thought there was a connection with my eyes. It doesn't help though because it will make you feel more tired - your eyes are enough to cope with. My blood count is fine now and I make sure it stays that way because I use autologous serum (made with my own blood `donation').

Take care now.