Yesterday I spent the day in bed - for the first time.

[Spuddie]

I have had RA for something like 13 years - well that's when I got the first lot of knee pain and swelling that took me to the doctor. Only later realised that the 2 or 3 years of general 'unwellness' was probably something to do with the RA as well. It took best part of a year of nagging to get a diagnosis and then only when an MRI was done. Diagnosis - some sort of Mono RA in the right knee and some problems with the 'leaders' in the hands. Got put on MTX about 10 years ago. Had plenty of time when I was perfectly fine - or just got on with life, and times when the rheumy said I should have contacted the nurse and got a steriod or something. But hey ho! Flare ups didn't last long and didn't happen too often. I just jogged along not knowing too much about RA. Did read about the new drugs that can be used with MTX that can pretty much stop the disease in it's tracks and asked the nurse about them. She was pretty much dismissive in my case - I didn't even have a positive result for Rheumatiod Factor (the test was done in 1999) and I wouldn't be considered. MTX has been increased, decreased and increased again. Occassional xray of knee joint and once had a chest xray.

To be quite honest I wasn't even really sure that I had RA, even though I was taking MTX and got problems with my knee - nobody ever takes any notice when I say I get problems with my hands - swelling, painful joints, stiffness, problems maintaining a grip, and sometimes my wrists. This was partly due to comments such as 'you don't seem to be becoming rheumatoid' and partly due the the medics only being interested in the 'some sort of mono RA in the knee' and surely not having Rheumatiod Factor present in 1999 means I don't have RA (well that's what I understood the nurs to mean). and I didn't seem to be like the 'old ladies with rheumatism' that I remembered from my childhood with their deformed joints.

Then the hip started to play up - about 2 years ago. Not much - not all the time. The was when the MTX was increased back up to 15mg.

Then last september the knee flared up again. Struggled on with painkillers and some 'rest' for a while - but always aware that you need to keep using it to keep the muscle in good order, supporting the knee etc.

Come October gave in and called the nurse and off I went for a steroid injection. First time of having one of these. I did have an aspiration and steriod back in '01 - not sure I would willingly go through that again and it only helped for a few weeks.

The nurse happily told me the steriod jab would become my 'new best friend'. We it was - for a couple of weeks. Then back to what was now normal. Not necessarily debilitating - but sometimes a bit of pain - sometimes a lot of pain in the knee and the hip joining in.

December and a rountine appt with the nurse - suprised the steriod didn't last longer - some more xrays and come back in six months.

In March I went to see my GP - have been feeling very tired - no not tired - fatigued for weeks. A whole load of blood tests later GP is trying to get me to take anti depressants as he thinks I am depressed. Bloods - anaemia, diabetes, thyroid, ESR's, cholestrol etc, etc etc are within normal limits. I refuse as I am not depressed - been there and done that before and it's not the same. Someone has just sucked all the energy out of me I said. It could be post viral he says or you might be getting ME he says.

Knee and hip, in the meantime are still playing up.

Got another appointment to see the nurse a couple of weeks ago. No steroid this time - as it didn't really help last time she says. This time being referred for an Ittrium injection. Will this help the hip I ask? Well the steroid part of it will be asborbed into the body so it should she says. A week later I call her again and ask - how long do I need to wait for this injection? Oh they usually get you into the clinic in around 6-8 weeks - that's not long (well I suppose not in the big scheme of things but it's quite a long time when you are in pain).

So still lacking much in the way of energy and the hip getting worse by the day and the knee being twice the size of the other one and hurting most of the time - hands swollen and stiff - and the pain getting worse...........

for the first time ever I have spent a day in bed due to my RA!!!

Do I feel better for it......not sure

[caggy]

Oh you poor thing, I commiserate with you, You have got it bad and need to be seen, I have struggled just like you at being heard and my friends on this site have really helped me push for action, I got a Steroid injection yesrterday afternoon in my rump, and am waiting for it to kick in usually about a week, but then it lasts for about three months for some of the pains and the fatigue, at least I thought it did, I have had the worse 7weeks of my life for pain and fatigue. I really hope it improves for you and you get a better understanding of your rights and medication that works. all the best Carol

[sylvi]

I think you should get a second opinion as there is something going on there that they don't seem to be seeing. You sound like you have ra,i'm no medic but all the fatigue is a sign. It is a very hard disease to diagnose. Ihope you have a lovely rest and feel brighter soon. sylvi.xx

[Hidden]

Poor you Spuddie - I'm like you in that my RA is pretty mild to date compared to others on this site so I tend to think at least once a day "do I actually have this thing?" but then the odd flare up when I've overdone things or come out of my usual routine tells me that it's not normal for my ankle to suddenly blow up or my knee - or to have wrists that are much better than playing fractured on me so I can't even turn the key in the car. That was all recent enough to not be a distant memory but then when I'm feeling pretty mobile and well - walking dog and doing exercises daily on my Wii I think it's all been a big mistake.

So I can see a time ahead when I get into your current situation and it gets much worse. I don't get fatigue much - just tired sometimes so I have a short afternoon nap but that's because I'm a poor sleeper and being self -employed I can suit myself re my working time so work a lot at night.

But from everything you are saying it is the RA that's making you feel so poorly and lacking in energy. That is the nature of the beast - and if you are sero-negative for the rheum factor then you are still amongst 25-30% of RA sufferers, many on this site. So maybe it's just time to come out of denial and accept you have the disease that you've been taking MTX for all these years because of? Big cyber hugs and hope that if you give into the RA then you will feel better because resisting it all the time is exhausting I know. TTx

[Jane06]

I'm so sorry you have had such unsympathetic care over the years. My RA is probably similar to yours in that it was only my left knee that was affected in the beginning, and I too was sero negative. I seem to have had good treatment though and was always classed as having RA - if only sero neg RA! I had elbow and wrist problems soon afterwards for which steroid injections worked very well. I was then treated with MXT and was virtually in complete remission for the next 12 years. It was about 10 years after diagnosis that repeat blood tests (I think I must have asked for them) showed that I was then RhF positive, and also CCP positive (a more recent and specific test for RA). So I agree that you shouldn't think your RA is any less serious than anyone else's. I hope you get the help you need in the near future and good luck.

Jane x

[Hidden]

Fibromylagia which can be present wit RA causes extreme tiredness x

[126Jessie]

Some of your treatment and diagnosis sound quite similar to mine. I felt a pang of empathy as I read it.

I have sero negative arthritis and too have had it for 13 years. Lots of faffing about with no-one stating what kind I had until I phoned my rheumy nurse last year and asked directly. ( Needed the info for an access to work form). Only advice I would give you is to ask questions especially about the treatment you can get. I have been fortunate that my rheumy has given me an opportunity to get every new treatment possible so you should be able to get the same.

However after methotrexate stopped working I am now on my second anti tnf which seems to be stopping working too ;(

Next challenge is to find out what the " you have a certain antibody in your blood" comment means. Something my nurse said and I haven't a clue what it means!!!

It is so difficult to take things in when you are in pain and often medics speak their language and not ours. Stick in there and I hope you get the treatment you need to help with your pain. Positive thoughts being sent your way x