Hi everyone

An update – it's a long one! Sorry!

I had my 2nd rheumatologist appointment yesterday. I didn't see my consultant, but I saw the Dr that was the one who took me through all the methotrexate information last time. He seemed surprised when I told him things had become much worse and I was now having horrendous pain in my knees and hips and having problems walking. Sod's law that yesterday I was actually feeling okay and not having too many problems. He moved my knees and prodded and poked at my hips and said everything seems to be working okay and that my problems with my hips seem to be superficial! I told him I didn't think that hardly being able to walk was superficial. And that this last weekend I could only walk by supporting myself on my partner. My bloods are fine and show no inflammation. So I started thinking 'am I making this all up in my head!' Because that's what I first thought when I started with pains all over my body when I first went to the docs, that I must be making it all up because how is it possible when my bloods are normal?

Anyway, I always feel like I'm giving them the wrong answers as he seemed very perplexed by it all and ended up getting my consultant to come in with him aswell. My consultant explained that just because my blood doesn't show inflammation doesn't mean I don't have inflammation. She assures me she doesn't think I'm making it up and that she's sure I have arthritis. She explained to me that even people with obviously disfigured joints and swelling, sometimes show no inflammation in their blood, and vice versa. I didn't realise that the inflammation levels in the blood weren't necessarily a direct correlation to the inflammation in the body. She has decided not to up my Methotrexate and wants to give the 15mg a couple of months to work. The reason for this is because I rarely have visible swelling on my joints by which to measure whether it's working, and I don't have inflammation showing in my blood, so can't measure if it's working by that either. So basically the only thing we can go on is my pain...so we are kind of doing this blind. Trust me to have an awkward body!

I've woken up this morning hurting though! It makes me want to march round there and ask them to prod and poke me now it's actually hurting! I posted a thread asking about steroid injections, and had decided to have one. I've now changed my mind and it may sound a bit daft. Basically, I've decided that as my body seems to have no way of telling me if the drugs are working, and the only measure I've got is my pain, that I don't want to completely mask it. Since I've been off work and been able to take all my pain killers, the pain is manageable. Yesterday I didn't take any painkillers as I thought it would be a good idea to be the worst I could be for my consultation (a tip I read from another arthritis forum), and I also thought not taking any painkillers would be a good test to see if I am feeling better. The last few days I've been feeling a bit of a fraud as I haven't felt too bad, but I'm signed off work. Anyway, by yesterday afternoon the pain kicked in and I felt terrible yesterday evening, so I've satisfied myself that I'm not better, and I was only feeling better because I've been able to take the painkillers. Does anyone else feel like a fraud sometimes?

I left the hospital 2 hours later with a promise of being referred to Occupational Therapy, Physiotherapy, 3 months of Methotrexate and Folic Acid, a suggestion of upping my Amitryptaline to 30mg a night, and another appointment in 2 months time. He also filled up 2 sides of A4 with notes! I am seeing a GP on Tuesday with regards to either going back to work, or another sick note.

I don't really know what to say to the Dr on Tuesday. I feel okay because I can take the painkillers, but I know that if I went back to work I wouldn't be able to take the Codeine, and would end up back at square one again. It makes me feel like I'm taking advantage of being off sick though. I've never been signed off work and I'm struggling with my conscience over whether I do need to be off work or not.

Gemma x

Hi Gemma,

Oh my gosh! Its like I wrote this - everything you are experiencing I too have been through and possibly some more people reading this!

Its just not fair! Everything about RA is not textbook we are all unique and should not be treated the same.

I have 'normal' bloods but show damage in my fingers and feet and visible twisting deformities in my fingers but because my bloods are 'normal' i must be ok!

Keep your chin up you are not alone

Lxx

I love that quote! May I borrow it??

Lxx

Oh Gemma

Stop beating yourself up about this. You have RA, it's been confirmed by a consultant, you are not a fraud, you are ill.

I can so relate to 'Yours bloods are OK' I don't know how many times I have been told this. How do they know what is OK for me? I never had all of these tests done before so how can they know that they are alright for me? They do not have the before and after readings. When I was 6 I had encephalitis, it's inflammation on the brain, I was in a comma for two weeks, I wonder if they gave me something then to bring my inflammation down and thats altered my blood readings. Thats my theory anyway.

When I was given my steroid injection I was told it was to see if I had any underlining inflammation that wasn't showing up with the readings. It did work, I did feel better a days after I had it, was told that this confirmed that I still had inflammation, even though the test didn't show it. They don't always go on the blood readings, there is other factors the main one being what I tell them.

I sometimes try to stop taking the pain killers, it what I call a need to know basis. You have to find out if you still need to take them. I only last a day and then it all starts up. RA is not like a normal illness. It changes all the time and everyone is different, I have been told this and thats why once we are diagnosed we are not just put back into the care of our GP like other illness. We have to be closely monitored by the hospital. RA is different in everyone. Whats good for one person is useless for another, its not a case of keep taking x y and z and you will be OK.

I've never had any swelling, but boy have I had pain. I use to think that it was the swelling, the fluid that caused bone erosion but have been told by the specialist nurse you still can get bone damage without swelling, something to do with your cells. You can never give them the wrong answer to their questions, you just have to tell them the truth, which I am sure that you do anyway. There is no set pattern for RA everyone is different.

I remember when I first saw the consultant, he prodded and poked me, had me standing on one leg, made me hold my arms out, put them over my head. Sods law with me as well, I wasn't in any pain at all that day, told him if I had of had the appointment a few days earlier I wouldn't of even been able to get in the car I was so bad. But thats the nature of the illness and they do understand it. So don't feel bad if on the day that you are seen you are OK.

It is early days for you, so hang on in there it can take up to 12 weeks for the medication to work, I know that sounds along time, I have always been use to going to the doctors when I've been unwell, having a course of tablets for a week or two and the Hey Presto I'm better, sadly this isn't going to happen with RA. You have to be patient and do the waiting game while they fine tune your meds just for you.

Take care

Paula x

Hi Gemma
I go with everything everyone has said. When I saw my GP recently I was apologising for seeing him so often recently and said I didn't want to turn into a hypocondriac. He was very reasuring - said that RA was a 'nasty illness' and he was happy to see me whenever I needed him. (he is lovely. He's been my GP for 30 years and I really worry that he might retire)
Murphy's Law says that whenever you have an appointment you will be feeling OK. I saw the OT about my wrists recntly and they were completely painfree that day. Played up again that evening though.
Sue

Hello Gemma,

Ah you poor old things. Have read everyones posts and I don't think I can add a
lot more. Never feel guilty. RA is a rotten thing to have and we are all different and
I think the Specialist do know that as well. I saw Rhummy nurse yesterday and
DAS score was 6.5 , however she said although my joints were painful they did not
look swollen. So similar to you I did not have swelling so then I was beginning to
wander 'does she think i may not have RA'. Why do they not consider out feet on
that score - my feet like so many others are awful.

I know I have , I know I can't do as I used to - but last night I was similar to you.

I think you need more time off work, embrass it and hopefully the REST will
help your body. It is proven that without the stress the body settles down.

Chin up.
Rose

Oh yes. And the people who don't know that osteo and rheumatoid are very different. I was struggling one damp day recently and was told 'oh yes, I get that in my back sometimes' No you don't. Grrr
Sue

Gemma

I am so sorry to read that you are struggling so badly. RA is a viscious and cunning disease.

I like you do not have high inflammation markers in my blood but boy am I suffering. I am having terrible difficulty in walking and my whole life has been concentrated in getting up enough energy to work for three days a week (the other two days I am allowed to work from home) and then the rest of the time I spend resting. I used to love going shopping with my Daughter but that has been knocked on the head for now. Yes I also think "is it all in my head?". I asked the question last time I saw my Consultant and he firmly put me in my place and told me I was not imagining it and yes I did have RA. He too inspected my knees and hips and could not find any problems apart from excess fluid in each knee. He took x-rays just as a precaution and was very shocked to see that my left knee joint has collapsed completely, hence the pain and problems walking. I am off to see an Ortho Consultant tomorrow for possible surgery. I hope that I have a very bad day tomorrow just for my own peace of mind and can prove how much pain I am in.

It is nearly two years since I was first diagnosed and I am still on the road of trying to find the right medication. All I can advise is that if you do take painkillers, make sure they are to their maximum dose and do not let the level drop. If you keep an even amount of painkiller in your system you will find that it does not hit you so hard.

As for work, I can also sympathise. We are all worried about our jobs and the probability of being able to give up work and live off disability allowance has dwindled every further. It is easy to say put your health first but it can be very stressing and we all know that stress can then make your RA worse.

I hope that the Methotrexate starts working soon and that you find some improvement in your pain.

Take care

Jackie
xx