Advice for a frustrated, worried and impatient person?

[Clokii]

Up until 2 months ago I was a healthy 24 y/o then one day my knee spontaneously became painful and swollen. Has gotten progressively worse over this period. Saw rheumatologist on 12th Jan, knee aspirated and injected with steroids, sent for loads of blood tests. Got worse still, affecting more joints, now on crutches and had an MRI Wednesday. Have heard nothing from rheumatology except for letter sending me for MRI which said diagnosis was undifferentiated inflammatory arthritis. Phoned consultant’s secretary today and found out I have a telephone appointment on 19th March. I’m very worried, frustrated and don’t know what to expect - will they have found a cause? Will I start treatment? I’m in so much pain all the time and I can’t live like this - please tell me this telephone call is the light at the end of the tunnel?

[rabbits65]

Oh you poor thing , how awful for you. See if you can bring that appointment on the 19th March forward a week , say how desperate you feel and need urgent help. Oh dear, I wish you well xx

[Katie-Mag]

Sorry to hear about your diagnosis and that you feel so unwell at the moment.

I’m sure your call with rheumatology will help - inflammatory arthritis can be successfully treated as many of us can testify.

When first diagnosed I found the booklets that NRAS produce really helpful for information about arthritis, treatments etc.

[helixhelix]

These days there are great treatments for inflammatory arthritis (this is the generic name as there are many different varieties). You won’t have to live like this forever.

Shame the steroid didn’t last for long. Did they not offer anything else to help in short term?

Anyway I hope you can bring appointment forward. Think of the questions you want to ask and write them down, as telephone consultations go quickly.

The bad news is that if you do. have an inflammatory arthritis then you will probably need to develop patience. dealing with this disease can be a very slow process. It took me a year to get it under control.

[stbernhard]

Hello Clokii, it's completely understandable that you are frustrated, disappointed and confused. Getting so much pain and debilitating swelling is a shock and you want reasons and answers. I was much like you. From very active to near wheelchair bound. Now I don't even think about having RA anymore.

My best advice is: you need to stand back, inform yourself by learning about RA - please please avoid Dr Google. Use websites like NRAS or other dedicated sources like charities or hospitals. Your contribution to the treatment and improvement process is going to be as important as the treatment you'll receive! I would recommend NRAS as a starting point. Look at their website. From the menu, choose "information" and "get support". There is also an app developed by Ampersand with the NHS, Universities and NRAS called "MyArthitis" which you can download . It's an incredibly useful and helpful tool. We have such good medication now with new ones coming on line all the time that the outlook for newly diagnosed people is much better than even a couple of years ago.

For your appointment on the 19th make sure you have all your questions written down.

There is light at the end of the tunnel. Be patient, you will need time to adjust to this new situation. It will get better. You'll find that you are much stronger than you may think. Come back to this forum and vent your anger, fears and frustration. There will always be someone here who has gone through the same and can help you in some way. We are here for you 😊.

[Pippy25 in reply to stbernhard]

Some good advice stbernhard and couldn't have said it better.

[bubblyalex in reply to stbernhard]

Couldn’t agree more. I’ve got the ampersand My Arthritis app too.

[Clokii]

Thank you all so much, you’ve been really helpful and I really appreciate it x

The thing that I find most frustrating is that what little information I have has been communicated via letter rather than in person (phone call, F2F, etc) - you can imagine what a shock it was to open the letter and find a diagnosis of arthritis rather than the previous “swollen left knee” or “soft tissue damage” that was told to me. I’ve not actually spoken to anyone from rheumatology since my initial consultation with them so I’ve not had an opportunity to ask any questions and they’re impossible to get hold of!

The steroid was working wonders at first - all the swelling went down and the pain was reduced so much.... until my knee locked and got stuck in place which it has done several times since! What started as a swollen and painful knee that I was told would clear up in a few weeks has gone to painful knee, ankle, elbows, wrists and fingers meaning that I’m on crutches (well, just one now) and unable to write most of the time which is making uni a nightmare! (Also my neck but I’m not sure if it’s related) I’ve been given tramadol to take to try and manage the pain which helps me get through the day but only takes the edge off things and I’m mostly asleep.

Sorry for the massive whinge - I just feel so poorly all the time and it feels like I’m the last one to know about everything! (I keep getting the chills/ fever type thing... it only lasts a few hours then goes but makes me feel dreadful and the nausea is horrific) My whole life over the past two months has been hospital, painkillers and sleep with very little communication!