So frustrated I could cry

I am so frustrated I just want to curl up and cry somewhere. 12 years ago I was do by my pop as having PsA. We treated with NSAIDs but lately my back has been so bad for 4 months I can hardly walk in the morning. My left wrist has been getting steroid shots ever couple months for 18 months. He sent me to see a Rheum. I just got home, he remains unconvinced and won’t treat me for PsA as I have no visible swelling, my blood work was all negative, he sees no visible joint damage on my hand X-ray. I handed him a list of symptoms I have had in the past 18 months including joint pain, tendinitis, plantar faciaitis, family history (father and niece) other autoimmune diseases, nail psoriasis, plaque psoriasis et. I am just so frustrated. Had to argue to get an mri of my back so I could go to pain management. He just seemed so, oh well, nonchalant. Anyone in the Fort Wayne IN area know of a good rheumatologist? Please email me.

OMG, the doctor sounds like a quack....I hope someone in your area has a better doctor to recommend for you! Hopefully, the MRI will show the damage in your back and you can be seen by a doctor who can help you. I had a protruding disc that I felt nearly put me in a wheelchair, but with rest, heat, ice and P.T., it got a lot better. 20# is the max I will lift--EVER AGAIN. Every time I lift even that much, I can feel the nerve in my lower back and down my leg start tingling and that's my warning to stop lifting and be careful--I never want to feel that kind of pain again. I also had nerve pain from an SI joing out of alignment or whatever it was doing (there's some PsA in/around it) and the sciatic nerve pain from that down my other leg was like a knife filleting my lower leg! But, again, P.T., rest, heat, etc. and being careful has made that 90% better. I didn't get any injections, but I will if it ever happens again....I was just so scared of them, but I doubt I could handle that kind of pain again. I also took a lot of ibuprofen--about 3,000 mg a day for awhile (which probably only relieved the pain about 50%, if that). Those were the only times I had to miss work because of my pain. My other PsA pain has always been achy, stiff, fizzy, burning, weakness, fatigue, etc., etc., but nothing that would stop me from working (either my housework or my desk job). It just made me depressed because I felt "ill" all the time.

We here know what you're going through--except some of us are lucky to have good doctors who can see the swelling, however slight like mine was, and feel the damage in the joints--and mine is moderate. You have psoriasis and the nail symptoms--I mean, really, he still won't call your pain PsA????

Hi, Adnuces, welcome to the PsA board. I’ve been off on holidays, but I’m back now and happy to be in the saddle again. I agree with Grandma J: I think you need to get yourself another rheum opinion. Before you get there, make sure that you’ve done your homework. You might want to get yourself the book that I recommend in BOOK REVIEWS: it has a great section on how PsA is diagnosed. (Sounds like your rheum might be well advised to read it.)

A suggestion for you: go to the MEMBERS secton and search for Indiana or IN. Go through the profiles until you find people that are near Ft. Wayne and PM them. You may find a good rheum that way.

Good luck with this!

What Seenie and Grandma J said! LOL

You sound so discouraged, but at the same time are advocating for yourself and seeking a second (third?) opinion, which is wonderful. Anything we can do to move toward effective treatment to slow the progression of the damage (rather than just pain management) is essential.

Hi there Adnuces, great to see that Seenie has made the same suggestion about contacting other Fort Wayne members ... sorry mine was just a quick message last night but I was having computer problems and I couldn't post here on the discussion board. Shimmer is another new member in your neighbourhood that you might want to message.

Hang in there Adenuces! I have a friend in the KC area and I'm pretty sure she has AS but her doctor treated her like a hypochondriac (I had one do this to me once as well) and we've both moved on to better docs. I actually did cry on the way to the car once, it is really hard to list out all the things that are TEXTBOOK for AI conditions and have someone look at you and say "you look fine." Ugh.

Well after a wait I finally got in to see a new Rheumy on Friday. What a difference. He couldn't believe my GP hadnt sent me to him 10 years ago when I first started having joint pains. He was so thorough and explained everything to me. He took time to go over my xray I had on my lumbar spine a few months ago. I have an appt with my pain management clinic on Wednesday to get an epidural on my back along with 4 other shots over the next month. Rheum has put me on a low dose prednisone until after the back shots are complete then we will look at methotrexate to start.

Great news ... today was the first step to a new tomorrow :-)

Adnuces, you’re on your way. It took a long time, but finally you have some traction. I hope the prednisone gives you some of the short-term relief that you need, and that you find a DMARD that you respond to soon. In the meanwhile, you’re in the dreaded Gap. Hang in there, and hang out here!

So glad to hear this! I just knew the right doctor would give the right diagnosis!

What a difference indeed! I've only just seen this discussion so I got the whole story thus far in one go. In addition to getting proper treatment it must be a huge relief to be believed & taken seriously.

Hey Adnuces--glad to hear things are going better for you up in FW. I'm down in Bloomington, IN, Nice to hear from a fellow Hoosier!