Sourcing advice please

[Wonderfullifeandmore]

Hi

I went to my GP in April with this problem. My GP practice give you forms for self booking for Rheumatology at choice of 2 hospitals. Both have no appointments available. I rang and was told 18 to 34 week wait but even then you have to go on a waiting list to get the appointment before that.

I booked a private one saw her and she examined me and told me to taper gradually from 5mg .

However I have a burning pain in my upper left back and have had it for ages now. My GP said it is inflammation and not to taper to stay on 5mg.

I have booked to see Rheumatologist again but she doesn’t seem to think it is related to what I have which is the Rheumatoid factor, but no defined diagnosis just that I have the factor. I have no joint pain at all now, just this horrendous burning sensation and also pain behind my left eye which comes and goes.

I have asked the Rheumy via email if I can have a scan or mri I know I will have to pay but can’t go on like this anymore.

Incidently she is an NHS Dr but cannot take me as a patient as I am out of her area.

[SheffieldJane]

You really need to have this checked out. Your eye drops have potentially serious side effects, including heart failure and blurred vision. As you do not seem to have access to interested doctors, I would go to the emergency department of your local hospital and give them your PMR and eye history and take your eyedrops with you. Let us know what happens. 🍀

[Wonderfullifeandmore in reply to SheffieldJane]

Hi it was the eye hospital that gave me the drops in the first place after my cataracts were removed. One drop is to keep the eye pressure down which I have been on since January. The other is a steroid based drop that I use only in one eye for inflammation maybe I should stop that one.

[SheffieldJane in reply to Wonderfullifeandmore]

only with the doctor’s advice obviously.

[SnazzyD]

Might be myofacial pain which PMR can make one more prone to. PMRpro gets this and may well comment. It gives you a focused area of much pain which has been burning type pain when I’ve had it.

mayoclinic.org/diseases-con...

[PMRpro Ambassador in reply to SnazzyD]

Absolutely - the shoulderblade area pain was a small area that really burned when bad and later faded to a crampy sort of feel, worse when standing.

[Wonderfullifeandmore in reply to PMRpro]

Hi PMRpo

What stops this burning pain please, can it be seen on Xray, Scan or MRI as my rheumatologist doesn’t seem to think it’s related. I have compressed verterbra from a fall 3years ago that is painful but in a different part of my back altogether. Also this pain behind my eye has been checked so many times by the eye Dr and no problems there at all. But as I had cateracts removed it’s been put down to that.

I need something that will look inside of me to determine it’s inflammation from PMR or RA.

I feel so helpless don’t know what to do. My Rheumy wants me to taper !!!!!!

[PMRpro Ambassador in reply to Wonderfullifeandmore]

There aren't really any forms of imaging that will show it - except possibly PET-CT if it is inflammation but if you are on pred that doesn't work too well.

It is usually a spasmed muscle and/or its attachment to other structures, A good therapeutic massage therapist may be able to help, I found a good Bowen therapist helped a lot - but it needs to be a down-to-earth sort not the rather wishy music and joss sticks variety. I found that sitting with cushions/pillows supporting my back meant it didn't hurt when sitting at least!

I doubt that is due to RA, much more likely to be muscular. Having a raised RF doesn;t tell you very much - you can have a raised level and be perfectly healthy and a perfectly normal level but have sero-negative RA or something else.

[PMRpro Ambassador]

I'd say get an appointment with the MESC or UES services and ask them about the eye pain - more use than A&E for eyes unless the Eye Hospital has a walk-in emergency service, You find an optician offering it near to you here:

primaryeyecare.co.uk/find-a...

You used to be able to be referred out of area in England (not Scotland) - or has that right to choice been removed too? Unless the hospital has made a decision not to take any out of area patients.

nhs.uk/using-the-nhs/about-...

[Mayadill in reply to PMRpro]

Or else all tertiary referrals would cease. Don't think the teaching-hospitals would like that.

[Bcol]

I can't comment on the eye problem , as so far I've been lucky enough to avoid ere problems. The burning sensation and pain sounds similar to the pain I get in my lower back, hip and leg which comes from my lower back problems, Sciatica. MRI earlier in the year. I had a long chat with my doc earlier this week about some sort of pain relief when it happens. I didn't want something I take daily as, so far, it's not something that happens daily but every few weeks. For the moment we've settled on Amitriptyline at night time, when needed. It is quite remarkable painful and debilitating when it happens though.

[Josie-Anne in reply to Bcol]

Hi Bcol,

I’m with you there on that, I had a prolapsed disc in 2018 and I’m still suffering from it now, I get cramp in my left calf due to it putting pressure on the root of the sciatica nerve.

I get a burning pain across my shoulder blades but I put that down to posture and standing for too long but I have moderate osteoarthritis in neck from C5 down over, I have eye drops for pressure too and get a pain in my eyes but I’ve had flame haemorrhaging in both eyes and now being diagnosed with posterior vitreous detachment which the eye clinic at the hospital diagnosed me with and can cause blurred vision but was told that the eye drops too can cause blurred vision especially if your eyes are dry, I was told to put eye drops in for dry eyes a few times a day which helps.

[Bcol]

I have moderate to severe OA from L5 downwards, plus one or two extras thrown in for good luck. So far managed to avoid eyd problems.

[PMRpro Ambassador in reply to Bcol]

eyd????? Autocorrect or mangling fingers ...

[Bcol in reply to PMRpro]

Could be either at the moment. "eye". 🙂🙂