I am fed up and completely and utterly looking for sympathy. I saw the rheumatologist this week and had to beg for more medication because it was a different one to the one I spoke to 6 weeks ago.
I left the room feeling like I wasn’t being listened to and was expecting too much. Like no one believes me. I explained my concerns about my heart and increases/ drops in pressure and he didn’t say anything. He just looked at me like I was mad. I said I was experiencing intermittent hearing loss and he said if it is inflammation related it should improve- but that was after I got him to agree to more medication….
now I have an even bigger flare than I was having - my right eye is going redder by the minute and I feel awful. I’ve just had a week off work because it’s half term. I’ve been resting and relaxing lots and done some lovely things. Now it’s time for work tomorrow and my hands and ankles are really hurting.
why can’t they get this under control?
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Tealblue2
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I have ankylosing spondylitis, which has strong links with uveitis, which is classed as a medical emergency. I’d imaging other inflammatory arthritis conditions are also linked. I’d get seen at an eye hospital
Go urgently to eye casualty xSo sorry you are feeling like this . I do too, they dont seem to be in a hurry to stop the joint destruction for me too. Patience my rheumatologist says, difficult when your body is falling apart....x
sorry you’re suffering at the moment. The pain around the eye, its redness and the hearing loss need investigation so don’t hesitate to see your GP or ophthalmologist .
Hi Tealblue2 , I’m sending you a very big hug 🤗. It’s so frustrating isn’t it, you have enough to cope with then the one person who should have more empathy has none. Just a thought, but after I left my GPs office once where I felt I was being dismissed and a nuisance I thought about saying something to her. So in my mind I practiced what I would say if I ever had dealings with her again. It went something like this “ Are you ok? , you seem to be having a bad day “ . I figured that may stop them in their tracks 🤔. Blow me next time I saw her she was lovely. It’s not that I necessarily see the best in people but I thought if I argue that’ll get me nowhere fast. Hope your eye settles down. Have a nice cuppa, light the fire and watch a film xx
As Runrig01 mentions there are autoimmune eye conditions (uveitis, scleritis) that are linked to RA. If you have pain in your eye, if it is tender to touch then you need to go to your GP or better still go to your nearest eye clinic. I have scleritis which when first presented was so painful especially at night. 2 years on still on meds for it. The sooner it is treated if it is uveitis or scleritis the better.
I feel for you Tealblue2, fighting on several fronts drives you to tears, you really just want someone to pick you up and help make things better! So hard having to go to work in pain, I really do sympathise. Don’t give up, hope you get things improved soon.
Hi Tealblue2. You really need to get your eye checked asap and preferably at the nearest eye hospital A&E department. I'm telling you this because that's what I was told a few weeks ago by a doctor in the Uveitis clinic during a check-up. If it's not something serious with you, at least you will have had it checked out.
Rather than going to A&E (also known as the ED) which is for life threatening conditions, see if there is a MIIU (minor illness and injury unit) because they will be able to assess things and they have much lower waiting times usually. You can find out where you nearest one is with NHS111.
I’m so sorry your suffering it awful. I do feel like it’s a theme. We are rarely listened to from start to finish and have to fight for everything. It’s just as exhausting as having a disease! Hope things settle for you soon x
No I don’t think so. I’ve had a few of those recently. But this is different - the whole of the white of my eye was red rather than one obvious line/ burst.
Hi There, I’ve had RA for 18 years and still can’t get it under control. I’ve had scleritis about a year and a half now and still can’t get it controlled due to my Ra not being controlled. My eye gets extremely painful, red and some blurry vision. This is linked to poorly controlled Ra. I’ve been on prednisone at really high doses and that helps. I’m on 15mg the now but still wake up with pain in my eye not to mention my joints are really sore to. I’ve been feeling like yourself, ignored at every Ra appointment I go to, they tell me my medication is working as my bloods say that meanwhile I’m aching in most of my joints. My ophthalmologist wrote to my Ra consultant telling them about my eye and that my medication was not working and they needed to review it. I had a letter within a week from my Ra consultant needing new blood work done etc, now I’m switching meds again. It took opticians and a couple of consultants to diagnose scleritis as they originally thought it was uveitis. Phone your optician and get an appointment, they will be able to help with diagnosis, medication that’s needed and also refer you to the hospital
I developed uveitis swelling in the eye because of RA. IT IS IMPORTANT that you seek medical advice. I don’t want to worry you but I left it and my opticians said I could have lost my sight. Please seek help soon my lovely ☺️
can you ask your Go for an urgent referral to ophthalmologist mine did this and seen within 2months and sorted a&e won’t sort you need to work it thro other channels Minor injuries or GP to get something moving. Speak to NRAS as well.
thank you all! I’ve done an online gp referral this evening. I really appreciate the help and advice- I thought I was over worrying. But I couldn’t take myself yesterday as there was no one to help with my daughter.
Yes, the A&E department is for emergency and life threatening conditions, but the potential loss of your sight is also an emergency, so in these circumstances you should not hesitate to go there!
so, I’m currently sat in emergency care having been sent by the gp this morning. I also developed high blood pressure and low oxygen levels over night. Thank you all for your advice- the support is truly appreciated x
I'm beginning to feel that way when I see my consultant- Rhum.- looks at his computer waffles he really needs to go on these sites and learn what people are going through. My cure go to a friend and get a cuddle, or two.
I was sent to the eye hospital to have my eyes checked. I had a very interesting conversation with the doctor there, who said why did you do what you did? I explained my reasons for things this week and he said, it’s very interesting to hear because you forget that people like you are real people with lives and commitments and have to live with this day to day and try and do what’s best. It was so freshening! He said he was right on time but allowed me to ask some extra questions and was really helpful! That’s the kind of doctor people need!!
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