I hope this isn't too long to tell m history. I thank you for your patience in advance. About five years ago I began just feeling "stiff" in the lower back and leg area. The pain wasn't terrible, but it really immobilized me. My doctor said it was poly rheumatica and prescribed prednisone. I did get relief from that, but puffed up and the side effects were bad, so stopped that. Thinking it was a disc problem, they did an MRI and found osteoporosis fractures and I went through the procedure to cement those. No relief from that. The pain and stiffness were getting worse. Put me on Vicodin and did get relief from that, but then they cut me down to nothing. The pain now was intolerable. They implanted a tens unit in my back I control with a remote and that helps some, but the tingling gets annoying so I don't run it all of the time. I am 82 and can barely move anymore. My daughter is pushing for a PA diagnosis because I've had psoriasis since I was five years old. My fingers are very arthritic, but at my age that's to be expected. My doctor tells her no, it can't be that because I don't have the standard sausage looking fingers associated with PA. She told him she'd read that doesn't mean a thing, nor does it that my fingers joints don't hurt, that PA can hit the lower spine. I am making another appt. and need to know, is there a test for PA that I can request be done? She says since the ONLY time I got relief was when put on an immune suppressor, that indicates it's auto immune related. She wants me to find a new more open minded doctor and wants to suggest cyclosporine, just to try it because it's not as strong or has the side effects of like Enbrel and others. Can anyone tell me what I should do to confirm or rule out a PA diagnosis? Life is so very miserable.
Hi Dolores, I totally agree you really should see a different specialist… From the sounds of it, it really could be PA… There is not a major diagnosis as such with PA ( blood test etc) it’s more about symptoms. And at the end of the day everybody is so different… Just because you don’t have the “obvious” signs of sausage fingers an toes doesnt mean anything… At 19 one of the first parts of my body to fail was my lower spine and it was the worst pain ever. Keep strong and I really truly hope you have some answers soon!!
Sarah
Hi, Dolores! Welcome to the board, although I’m sorry you’ve had to join us. It’s no picnic, living like this, is it?
When you say “doctor”, do you mean your GP or do you mean a rheumatologist? If it’s your GP, first of all, you need to ask for a referral to a rheumy. They are specialists in mystery conditions like ours. The trouble with PsA is that there is no specific test for it. It’s what’s called a “seronegative” condition, so it doesn’t always show up in blood work. And it’s notoriously difficult to diagnose (sorry for the bad news). Just because you don’t have sausage fingers means nothing. Neither do I and many others. My problem areas tend to be below my waist: knees (now replaced), feet (ongoing issues) and hips (waiting for replacement surgery). I had mystery aches, pains and complaints for many years (all written off to "what do you expect – age, menopause, extra pounds, on your feet all day, and any other excuse or explanation they could find). It wasn’t until they discovered erosions in my feet that I was sent to a rheumatologist. At that point, it didn’t take her long to diagnose the problem. Oh, by the way, it was only after seeing the rheumatologist that I discovered that I have psoriasis. The only place I have it is in my nails. How are yours? (A very high proportion of people with PsA have nail involvement, proportionally more than people who have Psoriasis alone.)
Find out who the best rheumatologist is in your area, and ask to see him / her. I hope you find relief soon: a life of pain and immobility is awful, as many of us know first hand.
Wishing you the best, Dolores, for the holiday season. Keep warm up there in MN!
Thank you both for the quick responses. Today is a terrible day and your responses give me encouragement. Yes, my regular GP. I made an appt. with another one to get a referral as mine wouldn't give me one, so first to a new GP, then to the right one, I hope. It's been difficult to understand the resistance to finding out what is wrong unless they just don't want to be proven wrong. Such a shame. So, more days of hurting, but perhaps there will be light at the end of the tunnel or at least some improvement.
Oh Dolores, it’s a terrible day here to: snow on the ground, snow falling, and more snow on the way.
Don’t even try to understand your doc’s reluctance to refer (although I tend to think you’re right about their not wanting to be proven wrong).
I think your expectations are reasonable: you’re not asking to be able to do Zumba, you just want to be comfortable! Persist until you find a doc who can help you. I wish I had been much more demanding much earlier in the game.
