Off for a second opinion tomorrow. Not sure how to tackle it

[Helzbells]

Going for a second opinion tomorrow. Not sure how it's going to go and what I will do if I take goes badly. Nobody is disputing the diagnosis but the treatment or rather lack of it.

Typically I've been unable to walk properly, sleep or anything due to the pain and yet this weekend I've been at my best for some time. I'm terrified they will just say, so you aren't bad enough to get treatment. I'm worried they won't believe me.

I am allergic to dmards and don't qualify for biologics in my area which I see on here I'm not alone in. I've been told to hope I get some permanent damage then I will be treated. Again I see from here I'm not alone. How can they do this in this day and age. It feels like a two tier system. One for those who are model patients and another foe those who in their words fail on them drugs

[helixhelix]

Horrible position to be in, so all I can say is good luck.

You could ask about old fashioned drugs like gold. Could be worth a try?

[Entero]

That sounds really tough helzbells and you have my sympathy. I think all you can do is keep going, don't doubt what you know to be the truth of your situation (the effect on your life) and hold your ground quietly, firmly and persistently in communications with the doctor. I know this can be hard when you're not well with an invisible illness but my experience is that patients who do this tend to get results. Good luck and let us know how you get on x

[nomoreheels]

Hoping you see a good, or rather open minded Rheumy experienced in all aspects of the disease. Just such a Rheumy is aware that RD isn't textbook, has many different forms & so is aware that treatment should be individualised to each patient. There's a treatment out there for you, fingers crossed whoever you see is able to form a plan for you, one you don't respond negatively to, maybe one of the older meds.

Do keep us updated. x

[Helzbells]

Registrar at Bristol says I don't have RA I have fibromyalgia. He says I've been treated for toxic drugs for nothing and a positive anti-ccp and family history don't mean a thing. He says it will probably all go away once people stop telling me I'm ill! The only reason I went to the GP in the first place was my hand seized up and I couldn't move it.

He says we will have to wait for the new bloods and the ultrasound but he would bet £5 it was in my head.

I can't believe it. I can't even button up my shirt and I can't bend my knees but apparently that's not indicative. He would recommend no treatment at all but painkillers and just getting on with my life!

[Seenie]

Oh dear. I've been in the same position: I was undiagnosed and repeatedly told that I had nothing that couldn't be fixed with diet and exercise, and to quit obsessing and get on with it. After more than a decade, I was diagnosed with severe Psoriatic Arthritis, but only after three joint replacements and joint erosions all over my feet. (PsA can be severe while blood tests appear perfectly normal.)

You know your body better than anyone. Persist.

Have you ever been treated with steroids? If steroids help, it's an indication that your pain and stiffness is caused by inflammation. Your GP can prescribe that trial for you if you haven't already had it.

Do you have any skin or nail issues at all, even ones that seem too minor to bother about? I had dry, itchy skin and a couple of toenails with a bit of "fungus". Is there anybody in your family with psoriasis? I was incredibly stiff for years and couldn't sleep because of the pain. But I got on with it, thinking that "they" had to be right, because "they" were doctors.

Please don't give up until, after the appointment, you say to yourself "OK that all makes sense to me." Until then, persist. The doctors who blow you off aren't going to be the ones who have to live with the consequences, are "they"?

[Helzbells]

Yes I've been on steroids they helped. The registrar today said that meant nothing as they have an effect even if it isn't lowering inflammation. I thought my symptoms more closely matched psa but I have no skin conditions

[Hidden in reply to Helzbells]

I feel for you. Just to let you know, I didn't think I had any skin conditions either. But all my life I have had dry and itchy ears. It lately got so bad that I kept scratching until I bled in my outer ear canal. The dermatologist said it is psoriasis. Since it didn't present the usual places (and it is hard for me to look into my own ear) I would never have guessed.

I am awaiting appointment with rheumy number 4 since I have pains, stiff and slightly swollen joints. But all tests comes up negative so no dx. I got the latest referal since prednisolone helps, so seems strange you've been told it means nothing. Apparently the system finds it really difficult to help us if we don't present with the textbook symptoms