Advice please? I'm new and in the process of being diagnosed...

[Lizardwriter]

Hi, I'm 49 and I'm in the process of diagnosis. Been having symptoms for about 2 years (fatigue, pain in my feet, low mood, then pain in my hips, arms...and now everywhere.) My FR is 1450 so v high but my other tests for autoimmune came back negative. MRI shows onset of osetoarthritis in both hips and arthralgias in both hands. Rheumatologist said it was OA and said she'd see me in September. But in the last 2 weeks I've had flu like symptoms, unable to function properly at all, low grade fever and crying all the time, pain EVERYWHERE and its been terrifying. I rang the hospital today because I couldn't believe ALL my cartilage was being eaten away so quickly, and spoke to the rheumatology registrar. He thinks I may have inflammatory arthritis (so RA? Its not my spine and I don't have psoriasis). He said I should take neproxin and they might try me on DMARDS and steroid injections but I will have to wait up to 4 weeks.

I read the meds work best if you get RA patients on them within 3 months of first flare up. I am so worried that if this is RA, and I have been undiagnosed for 2 years, there will be damage that can't be undone. I used to be a professional dancer and I run a pilates practise, so I'm really fit (or I was until recently.) What is happening when you have a flare up? What happens if the drugs don't work (I've read your posts, it all sounds so scary) and I already have OA in my hips.

Any advice welcome...and thank you for access to the community...it's lonely out there with the pain...and I'm sure I will have more questions - at least there is treatment if not a cure, there's nothing except joint replacement for OA.

[JanetMaryBishop]

Hello Lizardwriter

Don't worry - it can take that time to diagnose RA. It takes a few weeks of tests, scans, bloods, etc, to tick the relevant boxes, and if you have enough of the right ticks, the diagnosis will be made and you will be started pronto on whatever your unit thinks is right.

If the first drugs tried don't work, there are plenty more. They start on the cheapest first, but there is nothing wrong with that - mine are working (I've been on them 13 weeks) the one change being a change from tablets to self-injection for the Methotrexate - this saved me from despair, as the tablet form made me feel yucky all the time. I tolerate the 3 drugs quite well, at the moment.

It can take a while, but once the diagnosis is reached - POW - they don't hang around.

Hope it goes well. The first thing the Rheumatology Specialist Nurse said to me was that if you were going to have Arthritis, RA was a plus, as they can treat it (and hopefully halt it).

Hope all goes well.

J

[scotslass333]

Hi there, and welcome. Sorry that you've needed to find us but you'll find lots of support and help from others here. It can be a long and difficult road and it's easy to feel overwhelmed at first. Even getting a diagnosis can take a while. I remember being surprised that you can have both rheumatoid and osteoarthritis, that's how naive I was! Older and wiser now! You're having a rough time, constant pain does drag us down, but hopefully they'll get you started on some medication soon. Take care meantime.

[helixhelix]

Hello and welcome. I hope the Naproxen is having an effect? Constant pain is so depressing and debilitating. And that you do have an appointment scheduled in 4 weeks?

Similar to you I had a couple of years of aches and niggling joints, which doctors dismissed (age, menopause, OA). And then it suddenly became super active, with joints all over my body swollen and painful, fluey feeling etc. By the time my appointment with rheumy came round I was nearly completely housebound, couldn't do as much as hold a tea cup, and was terrified. Couldn't believe I could ever recover use of my joints. But I did. The drugs worked brilliantly for me (and don't worry if the first one doesn't work there are about 20 others). I had one small erosion in my foot that's permanent, but that was it - everything else was just non-erosive inflammation. Being in pain doesn't automatically mean your joints are being damaged.

And I had, and still have, no problems with the drugs and I'm on triple therapy so have a bucket load. I think being fit and healthy really helps as if you have a good metabolism your body can process them well.

As for advice, stay calm as you can - stress and RA (if that's what it is) don't go well together. Stay off Dr Google as you will scare yourself silly, and remember that people tend to post on the internet when they have problems or the worst, worst type of disease, so it is really not representative of the common reality with this disease.

Use heat and ice to calm joints, hot wheat packs and keep moving as much as you can - but gently. And eat properly and rest as much as you can - don't try to be wonderwoman and struggle on.

Amd remember many of us have perfectly good lives despite having an inflammatory arthritis - it's not the end of your life as it is now.

[Tessthomy]

Hi and welcome lizardwriter. All the above is great advice. It’s a scary diagnosis but we are a friendly lot here, some who have had RA for years...take control of your own health and listen to the advice of the experts.

The drugs are like miracle workers once you find the right one for you. Keep positive and as active as you can but don’t over do it. You’ll get there .. being fit in the first place is always a plus .. and good luck TT x

[stbernhard]

Hello newbie, you have four good replies already so I won't repeat. Do you know about NRAS? Their website can answer many questions you may have and if you want to talk to someone, their helpdesk team on 0800 298 7650 are absolutely fabulous, caring , understanding and knowledgeable. I wish you all the best and keep in touch.

[cgregg718]

So sorry for your pain! The first time I had flareups I did not know what it was, I only know that I would have such intense pain that I would not be able to move the joint. At first it started happening in my shoulder and I thought I had frozen shoulder. I could barely lift it and even moving in bed would be so painful I would almost cry. With it being the shoulder I could not tell that it was swollen so I did not know what it was. When it started happening in my in my hands I could tell immediately that one hand was twice the size of my other one. That is when I knew it was rheumatoid arthritis or something like that. Since I’ve been on my meds I don’t have many flareups and if I do they have not been too bad. My doctor says I have been lucky because I am on the smallest dose of the mildest drug they have hydroxychlor. I have a friend that has osteoarthritis as well as rheumatoid And it looks like the osteoarthritis does most of the damage, at least for her degeneratively. If you are having low-grade fever‘s and severe fatigue there maybe something underlying that is happening. Some other form of autoimmune? I hope at least hearing my story may Help to give you a better picture of yours. I hope you get the best care possible and that they find something for you quickly that works.