Confused from the Preselis Hills

[gillianf]

Hi  I live in a tiny village in lovely Pembrokeshire in the Preselis. We have a small small holding or a large garden - depending on your point of view- and four cats.  Not sure which is more work....  I work three full days  a week in the ticket office of a local attraction and love my job though am b eginning to worry how long I am going to be able to manage it.  I am also an artist who has had several sucessful exhibitions.  I am pretty busy so am very not happy to have suddenly aged around 10 years overnight.

Around 18 months ago I had a problem with a swollen and painful knee and stiff painful fingers,.   GP did xray of knee but dismissed fingers.  Said knee has osteo arthritis.  Sentme  away to rest it. Went back three months later with stiff joints in fingers, toes and both knees.  Was advised either the menopause  ( I was then  58) or a virus.  Give it time and it would settle down.  

A routine appointment with my optician highlighted very dry eyes and she suggested it might be Sjogrens syndrome so wrote to my GP who finally referred me to a Rheumatologist at my local hospital.

The pain, stiffness, tiredness and complete lack of appetite, etc. etc continued and I have beententatively diagnosed with Sjogrens, Psoritic, Osteo or now RA.  Currently the emphasis seems to be onRA.  

There is nothing showing in my bloodwork and nothing on xray or my scan so although the symptoms continue to worsen and all joints exce pt my ribs and spine are painful and stiff now, I feel like a fraud and that i am imagining it all.  I am very confused.

I am now injecting methotrexate and be  ginning to build up my dose after trying sulphasalazine for 4 months with no effect and of course I am taking pain killers.  

Can anyone advise on if you can still have RA with nothing tangible to show other than pain and stiffness??

[Matilda7]

Not quite sure what you mean by anything tangible....if joint damage, then that's what we're all trying to avoid! If raised CRP and ESR, then they are very general indicators of inflammation. Not everyone has a positive Rheumatoid factor or anti- CCP antibodies. So you can see that diagnosis is more of an art than a science! That said there are now many more tests being investigated which may help with diagnosis.

Have you looked into other ways of controlling the pain eg diet? Lots of us find that eliminating some foods can be helpful as an adjunct to medication. Hope that's some help....do ask more questions!

[gillianf in reply to Matilda7]

Thanks for this.  

[farm123]

Bloods are not the be all and end all of this disease.  A variety of factors will make up a diagnosis including stiffness, joint examination, xrays and bloods.  Many people are sero-negative where the RA factor does not show up in the bloods.  Mine is sero negative and has been for years.   Meds will take up to 12 weeks to work.  Farm

[medway-lady]

I have RA and am symptom free, apart from the one little tablet at about 10pm there are no issues. I walk , dance and have loads of energy. No swollen joints no inflammation and am in remission it was confirmed the other week by the RA consultant. Its just a matter of not giving up so please don't,  your not a fraud but on a journey. You will feel better and so do not give up but persereve and look forward with optimism as you will get there it just might take a while.

[Matilda7 in reply to medway-lady]

Lovely to hear such good news!  Which little tablet works so well for you?

[lornaisobel in reply to Matilda7]

I would also like to know what that 'little tablet' is !!!!!!!!!!!!

[gillianf in reply to medway-lady]

Wow.  What a positive answer.  Thanks.  Its a little overwhelming and I cannot wait to get into the same situation.  Fingers crossed on the MTX .

Thank you.

[medway-lady in reply to gillianf]

I take Leflodomide or Arava which like its really fun. For the first couple of weeks I was in agony my hands, wrists, shoulder hurt worse than I can describe but I kept and then after about 3/4 weeks it kicked in and my life changed. Its for me a great medication. Have booked a holiday in Russia and am going birdwatching later in the year to the Highlands and I now feel confident that life is on the up. So be warned it has side effects but has left my hair alone, and has no downside.

[flow4]

Hello Gillian, and welcome. It would be worth asking for an ultrasound scan of your hands, which will show inflammation if you have it. Lots of people with spondyloarthritis or psoriatic arthritis, and some with RA, have normal blood tests. 

I felt like a fraud too - still do sometimes. But someone pointed out to me what I'll point out to you: the doctors don't hand out DMARDs like smarties; they wouldn't have given them to you if they thought you were just malingering!

P.S. You don't paint cows do you?!

[gillianf in reply to flow4]

Thanks,  that is a good thought.  specially the injections as I guess they are quite expensive.  the ultrasound showed nothing either but maybe the MTX is beginning to work.  

I do paint cows occasionally.  Sheep to.  Be hard not to here in deep countryside.  

Gillx

[flow4 in reply to gillianf]

I asked about the cows because I saw some Hockney-style cow portraits in Narberth a couple of years ago, painted by someone called Gillian, I think

[smithfield]

Hi Gillianf sorry not experienced enough to comment on your lack of evidence in bloods etc.for RA but you have certainly got some symptoms.

But to say  welcome to the forum it is a very helpful and supportive group

Best wishes

 

[cathie]

I'd have thought pain and stiffness, you also mention fatigue are classic symptoms of RA. Have you had blood tests? Methotrexate can take a while to startworking. I hope it does soon

[gillianf]

Thanks Cathie.  I have fingers crossed (as far as I can :-)) that the MTX works.  Keep well. gill