What is wrong iwth me?

Iryna

Maybe, somebody will help me to understand what I am suffering from. The doctors fob me off for four years, because my Rh Factor and autoimmune profile is clear.
It started with swellings on fingers, at first small knots, then the whole joints, now I wake up every day, not being able to bend front fingers for a few hours and in pain. Recently it spread on a knee joint. I got a bulge on the side, which is here to stay. First two days the bluge was hot, now it's cold but painful and painful to walk. I was given steroid injection in the knee, which didn't make the slightest difference. Generally steroids or leflunamide have very limited effect on my condiion, but it seems to be slowly spreading. Now hip joints are burning. Usually it preceeds to swelling. I am afraid that if steroids don't seem to work for me, I will be told that it's not an inflammation (they diagnose me with fibromyalgia, but F. doesn't cause joints to swell or disfigure them) and left at that.
I used to take sulfasalasine and plaquenil, but they stopped helping me, after a severe a prolonged stress. That's when the illness began being unmanageable and started to slowly spread. Before knee swelling, I took a few pregnenolone pills. They always seemed to set a pain off, but this time the joint has changed. If anyone can give me a clue. I'm tired of being trown from pillar to post and of this constant pain. I am told that it's not arthritis, and as steroids don't help much, I'll be told this again.

Thank you.

dreamdaisy

Oh Iryna, you poor thing, what a sad story. I am afraid that is what a lot of doctors do, if you do not fit their 'profile' of what an arthritic is then you are not. :roll: From what you have written I think you sound like a classic arthritis sufferer but I am not a doctor, I cannot tell you what is what but I think you do need to keep on at them to help. Is your GP easy to talk to? If not is there another doctor at your practice you could talk to more easily? I began with a badly swollen left knee which was hot to the touch, but it took about six years before a tentative diagnosis of an inflammatory arthritis was given. There are many forms of inflammatory arthritis, they can be hard to diagnose, but nine times out of ten it is the patient who has to keep pushing and nagging. I wish you well. DD

ritwren

I just wanted to add my support to what DD has said and hope you get somthing sorted soon. In the first instance I'd do as DD suggests and get in touch with your GP. Also, do you have a Rheumatology Nurse you can contact? she may be able to help too.
I'm so sorry to hear you've been fobbed off you're having a right tough time of it. This does seem to happen a lot to Fibro and Arthritis sufferers. I hope you get some pain relief, perhaps your GP could review what you're taking.
Do let us know how it turns out. Gentle hugs, Rita.

kittymedaughter

Hi Iryna, I am sorry u are having all this pain and no answers from the Dr's.

I have had fibro for 9 years and even though the Dr's say there is no swelling, I can tell them there is...The top of my spine swells to a hard ball, my inner elbows swell, the muscle under my arms to my back swell, My knees swell and i get inflammation on my back under my ribs...my hands and fingers swell..so text book Dr speak isnt always the facts for Fibro

The blood tests don't come back with RA (though not had that tested for a year)

I do hope you get a firm diagonises..all we want is a name for the pain we feel and when we get poo poohed it is so frustrating! Hugs to you

Iryna

Thank you so much for your support, guys. I really needed it. It's horrible when you're told again and again that it's all in the head and you're wasting Dr's valuable time.

Would you, from your experience, recommend any other tests I could do (apart from Rh Factor and autoimmune profile)? Just know that patients often are more knowledgeable than specialists, who know what's written in the book. Then I'll be pushing for these tests or will pay for them privately, if all fails.

Thank you, again.

dreamdaisy

There is more than one sort of inflammatory arthritis which is termed a sero-negative type, ie RF is not present. I have one of those, PA, but 'luckily' for me my inflammatory markers were always high so that 'gave the game away', so to speak. Having said that it took years for any sort of diagnosis to be given to me. Have a look at the information that AC publishes and perhaps ring the helpline, they may be able to give you more information. I wish you well. DD

bubbadog

Dear Iryna, I wanted to add on from what DD wrote, I have suffered from Fybro for a long while now maybe from when I was at school but never got diagnoised until I was in my late twenties. And I didn't get dianoised with my Osteoporosis until I was end of my twenties. It's all done to getting a good GP who understands you and can get the hospital tests you need. I believe it's done to having a good relationship with your doctor. Hope you get the answers soon. And if you ever wanna talk please PM (private message) me. Amanda/bubbadog

traluvie

Hi Iryna,

Welcome to the forum..
I just wanted to offer my support..My bloods came back ok even though i had swelling and awful joint pain.. my rheumy was very good and sent me for bone scan which proved whta i was saying was right..
Please do not give up.. if you can be reffered to someone else then please do so, it is nit fair for you to suffer like this..You need to talk about this with your GP and make a plan of what to do next..
In the meantime we will be here to support you..x

Iryna

Thank you. What is AC, please? Where do I find it?

traluvie

Iryna wrote:

Thank you. What is AC, please? Where do I find it?

Ac stands for arthritis care..
At the top of page there is a link to publications and resources and the helpline number is on the top of the page too, they do have some very helpful info, so be worth taking a look to see if it can help answer any questions..