Hi everyone

I'd like to ask a couple of questions if I may, I'm getting nowhere with doctors and would like to hear from people with RA.

For the past 6 months I've had joint pain in my feet, spreading to my ankles, knees and now elbows. I had to stop work in January because the pain was so bad I'd cry all day in the office, I wasn't getting any sleep due to the pain, it was hideous. The type of pain fits with an RA diagnosis, pain and stiffness in the morning or after periods of rest, seems to ease off with slow movement, joints burn at night etc. At no point have I had any visible swelling, I've mentioned it at each appt but been told that they can see swelling from the way my toes are splayed, and the podiatrist I saw in December and the consultant in January said they could feel swelling by examining the joints. I've been using a crutch since January and I'm still off work and stuck at home all day doing nothing but resting.

I've had problems with the hospital, eventually going private to have an ultrasound scan. The scan showed inflammation in my feet. I had an nhs hospital appt last week and was expecting to start sulfasalazine. Again I mentioned that there was no swelling, but the doctor said she could tell my joints were swollen by the gaps in my toes. The doctor did another ultrasound there and then and said that there was no inflammation, my blood tests show the inflammation markers have gone down (presumably due to the steroid injection I had in feb) so they reconsidered the inflammatory arthritis diagnosis and decided they don't know what the problem is. I've been told for 3 months that it's probably inflammatory arthritis and now suddenly it's not and I don't know where to go from here!

The blood tests haven't shown raised inflammatory markers, they've always been within the normal range. I was sent away with no treatment and told I'd have a follow up appt in 4 months. I have terrible circulation my feet and hands are always blue and cold, also have raynauds and hypermobile joints. Maybe the awful circulation means there's less inflammation?

I guess I'd like to hear about other people's experiences of being diagnosed. Were your inflammatory markers raised on blood tests right at the beginning of your disease, or did it take time for them to become raised? Did you have visible swelling? Can you have RA without raised inflammatory markers?

I feel like I'm back at square one. It's been more than 6 months of pain and now no diagnosis or treatment. I'd love to hear your opinion or diagnosis story.

Thanks for letting me vent, and thanks in advance for any replies.

welcome,

agree with Paul inflammation markers are only one part of diagnosis,

mine was straightforward high CRP/ERS levels, and told straight away it was RA.

but i was also told not to focus on the numbers when i started treatment but more on how i felt. i would go back to your GP and let him push things for you, it's too long a wait without any help.

Suzanne

Hi , I have sero-negative RA and my inflammatory markers although raised at the beginning never show very much , the docs should look at the bigger picture , you sure sound like you have all the symptoms , I was lucky and got a quick diagnosis , although I didn't go to the gp for a long time , only when I got to the point I couldn't cope , so I probably had it untreated for a while , stupid me ! this is a miserable disease and I feel for you , hope you get some answers soon x

Probably not......

Hi applepie

I too have sero=negative RA and secondary Fibromyalgia. My markers are never raised. Like the others have said you have to look at the whole picture.

Only you know how you feel - see another doctor. I hope you get some relief and the diagnosis that fits all of your sympoms.

You take care huni - sending you a big but gentle hug

Rosie x

It's one of the ironies of RA that early treatment is the best way to avoid long term damage whilst all treatments involve a long wait and see. Not worrying about is the right approach - good on you.