Confused!

HanP

Hi there

I am new to this site. I was diagnosed with ReA back in January following a bad case of viral Meningitis. While I was in hospital my knee swelled up and I had to have the fluid removed. Then a couple of weeks after I was discharged from hospital pain started in alot of my other joints mostly symmetrically. I had some steroid injections into my hip which was the worst affected joint at the time and then a course of physio and I thought that was it! I recently had a bad virus and now my symptoms have returned again worse than last time in that more of my joints are involved although luckily no real swelling apart from the inside of my hands just below the thumbs has swollen anyone else had this? and my fingers feel a bit tight? I went back to my Rheumatologist and she has just done a whole load of blood tests which I am waiting on, an MRI and ultra sounds on my hands,wrists,feet and ankles. I don't have any results back yet but the doc who did the ultra sound said he didn't see any active inflammation in my hands,wrists,feet or ankles. I am not really sure what this means? How is it possible for me to have pain in these area's and not have inflammation? And also I have the swelling on my hands. Does anyone have any experience with this? My other symptoms are: exhaustion,itchy red eyes,diarrhea,night sweats and swollen lymph nodes throughout. I guess I am wondering if this is reactive arthritis or maybe another type or arthritis or illness. My GP has referred me to an immunologist to check my immune levels so I will start to get some answers soon but I thought I'd post on here in case anyone has been through anything similar. I am about to start a short reducing course of prednisone so hopefully that will help with the pain.

phoenixoxo

Hi HanP,

I'm not surprised you're confused; that’s a lot of symptoms :?

Well, I don't have any experience of ReA, but I do empathise with presenting a complicated illness and having to wait for what seems ages for the results. In the meantime, I hope the prednisone proves useful and please let us know how you get on at your next appointment

Best wishes,
Phoebe

frogmorton

Hi Han

It's lovely to meet you and welcome you to our forums

It honesty seems that with certain type of arthritis the diagnosis part can take a long long time

I wish it wasn't the case, but it seems to be. If you dont have obvious inflammation or 'positive' blood results it is a process of elimination.

The good news is that you ARE having tests and you ARE in the system. It may be that the immunologist can help, but if not a rheumatologist might be the best person to help you.

Please do continue to use the forums while you go through this process - so many of us have 'been there' and we can support you.

We also have lots of ideas to help in practical ways too

Love

Toni xxx

HanP

Thankyou Toni and Phoebe it's just really nice to feel the support of others. As I'm sure all of you experience spouses and family members only have so much sympathy. I think my husband is just tired of hearing about my symptom's it's been so long now and I don't blame him. Just started my prednisone as driving is getting tricky with my sore wrists and I can't get anywhere with 2 children from my house without driving! I expect I will be skipping in a few days once the meds kick in :P here's hoping...

salamander

Hi, Ultrasound clear but lots of pain - been there myself. It doesn't mean a thing. I was told there was no inflammation in my joints by the ultrasound consultant even though my wrists were visibly swollen. Nurse said to ignore ultrasound doc so I pass that advice on to you.

You can feel extremely ill with any inflammatory arthritis and being in the system means you will get the treatment you need. One just needs a lot of patience as it is not an easy thing to diagnose.

skezier

Hi Han,

Welcome from me as well.

Its good they are checking out the auto inmumne side and well hang in there and with luck they will soon get you onto some meds and you will start feeling better.

In the mean time try to rest up when you feel really tired (fatigue is a horror to fight) and take things easy for a min if you can. I know that's not always possible.

As Sal says the hard part is always the diagnosis but once you have the full picture they can start helping you better. Nice to meet you. Cris x

constable

Hi there

I cant help as I have OA, but just wanted to say Hi and welcome. I do know how difficult it is when you have a family to look after yourself though. Try and make sure you rest whenever possible wont you. And make sure you keep us informed as to what happens next for you. Once you have all the results back they will know the best way to help you with the pain etc.

And once again, good to meet you.

dreamdaisy

Oh dear HanP, I've been there and done that and I know that the only 'medical' person one should listen to is a rheumatologist because they know more about inflammation (or lack of) and pain (or excess of) than those who just scan everyone who's sent to them. As the others have said the best thing is that you are in the system - diagmosis can be slow but lack of one does not preclude the use of meds. I was classed for some years as an inflammatory arthritis but when the correct label was attached nothing changed.

I am aware that ReA is a tricky one because sometimes it can clear up between infections (thus making one think it's gone completely) only to come surging back at the first opportunity. Grit your teeth and hang on in there - things are moving in the right direction but they can be awful slow at times. Us auto types are a tricky kettle of fish. I wish you well. DD

bubbadog

Hi Han, I can't help you with any the medical stuff as I don't have the same Arthritis. But just wanted to welcome you to Arthritis forum.

kentishlady

Hi Han. I can't help with any advice I'm afraid as I have different arthritis (OA) but do hope you can get sorted with some help as soon as possible. Just wanted to welcome you to the forum. I'm sure you will find it helps to share your problems with others who really do understand what you are going through. All the best. Beryl

HanP

Thankyou all for your support. Salamander it is helpful to hear that as I also have swollen wrists and inside of hands so found it hard to understand why no inflammation showed on the ultra sound. I nearly went and bought a wrist splint yesterday but decided against it as I can still move my hands and I think once the steroids kick in I won't need it anyway.

frogmorton

Hi Han

It DOES help getting all the lovely replies - the ones I got from my first post had me bawling my eyes out!

Glad you are able to take some steroids for now and hope they help enough to manage to get out.

Yup I agree this forum gives our OH's and familly and friends a break from listening to us

Love

Toni xx