Waiting... Worried

Until a week ago, I didn’t know anything about psoriatic arthritis. I finally had an appointment with a rheumatologist after waiting 7 months. Following a very bad case of strep - worse one I’ve ever had - I developed ever increasing pain. In the last couple of months its become fairly unbearable and nothing is helping. I had settled on fibromyalgia or possibly lupus as possibilities. After a long, thorough appointment, my doc discovered what she is sure is psoriasis on my scalp. Then the sausage toes and fingers. The lower back pain which could be spondylitis or possibly spinal stenosis, which runs in my family. Whatever it is, I’m on a path now that has me very worried.

She sent me for over 20 X-rays right away. Yesterday I gave a record 17 vials of blood for 35 blood tests. She’s thorough! She is referring me to a dermatologist and neurologist.

I’m 41, married, no kids, three dogs. Creative career that I love.

I’ve had weird skin issues since I was 12. Watery blisters on my fingers and palms, followed by peeling. Several times a year. The last 10 years or so, I’ve had recurring lesions on my chin, jawline/neck from the ears down, sometimes on my cheek and forehead. They happen fast, form little groups on my face, like cysts but watery and very infected, immediately. The one derm I saw said it was a nickel allergy. Nothing helps, other than straight manuka honey. I have tried everything, including a very restrictive low nickel diet. They weep, sometimes have some pus in them but they feel deep and painful.

For the last three years, I’ve had fatigue and pain. My thyroid is a little low, but has not responded to treatment. Now the fatigue and pain is at a whole new level and I am worried I’m going to chase more dead ends. The rheumy says we’ll figure it out, and I hope she will. She has definitively diagnosed fibromyalgia, but as a secondary complication.

Her thoughts right now are that the strep pulled the finger out of the dam. Triggered the psoriatic arthritis and fibro. Now I wait until I see her at the end of this month again. Wait and worry.

Rebecca, it sounds like you’re well on your way to a diagnosis, which is a good thing. Some of us have waited years (for me, 32!)for someone to take our symptoms seriously. Your doctor is doing all the right things to make sure you get the proper diagnosis.
PsA can definitely be scary, but for most it’s a matter of finding a treatment that works for them and tweaking things here and there along the way.
Proper treatment can make a world of difference… for me, it got me out of a wheelchair and back on the hiking trails with my family.
I hope the answers come quickly for you. We’re here to listen, answer questions, and cheer you on when you need us!

Hang in there, it is scary but as the others have said hopefully you sound like you are in good hands with your doc. Just read all you can about PsA but only from accredited sites as there is alot of rubbish online and alot of people who try to sell you cures. There is loads of information on this board and its all been checked by our mods to make sure its not flaky.
One of the most important things I’ve found is to be gentle on yourself, don’t push yourself too hard.
Another is to ask about being referred for physical therapy as we need to keep as active as we can. It can be painful but is so beneficial. I personally love the Tai Chi I was taught at my hospital and swim when I can.

Hi Rebecca, I seem to have followed a similar path to diagnosis as you. My skin issues started when I was 10 years old and continue today. I was diagnosed with PsA after a severe salmonella infection, which seemed to be my trigger. I have the weird blister-like rash that appears on my hands, forearms, and feet during a flare. This is accompanied by joint pain-mine is primarily in my shoulders, hips, and SI joint. After years of trying to figure out what was happening with my body, I found a rheumy who ran a battery of tests, similar to what you describe. I’ve had numerous treatments, which some worked and some did not. This is a journey, so hang in there. They will figure out what is going on and which treatment will work for you. As I’m sure anyone on this site will tell you, our disease and what works is as individual as we are. Best wishes for better health! This site and all those who participate are a blessing to those of us suffering!

Hi Rebeccaq...Welcome to this site. I was 31 when diagnosed. For years I had a very small dry patch on my scalp but just put astringents on it and it would come and go, No biggy. When I was diagnosed with Psoriatic Arthritis I had a sudden fever of 103 (and I NEVER have fevers) and pain in my middle back area. I was a Nurse and had no idea about this disease, as many don't. I went to a friend who was a Doctor at an Industrial Clinic. And *boom" he told me to get to a Rheumatologist as he thought I had a form of arthritis. I couldn't believe that from just these symptoms this guy was sharp enough to diagnose this. Like you, I had a work-up that took all day. Prior to this I had small dry patched on my elbow too. Again, lotions and creams did the trick to manage it and never thought much of it. The Rheumatologist diagnosed me with AS, and PsA. straight away. I have been living with this 33 years now so try not to worry too much as it is manageable.. There will be a lot of ups and down, so hang in there and stay on this site for info and support. Do your homework as it is essential you learn as much about this disease as possible. I wish you the best of luck Rebeccaq

Hi Rebeccaq! Welcome. I am a newbie too. Diagnosed about a month ago. I have a Rheumatologist who basically diagnosed me in 10 minutes. Of course I came with a long litany of issues that made the diagnosis easy for her. What I found out was that for about 15 years I had had symptoms that were singular issues that were dealt with as if they were all unique - TMJ, plantar fasciitis, bursitis, low back pain, tendonitis, swollen finger, tender balls of the foot, painful knees (at the IT band) the occasional dry skin on the eyelid and in the ear. Then, about a year ago I had a cold, that became a sinus infection and bronchitis, followed by pleurisy. After 5 different antibiotics they finally did sinus surgery and then while recovering from that about six of the above areas inflamed. The immune system went into overdrive and the disease was recognizable. The pain was progressive and I was very frightened. Finally, I asked my general practitioner for a referral to a Rheumatologist because I knew this was more serious. But - now a month later she has put me on methotrexate, folic acid and an anti-inflammatory that really works for me. I feel more human...not perfect but not without hope either. Hang in there...they call this time "the gap"...the time you and your team work to find the right medical mix for you. It may take some time - but you might get lucky too.

It's hard not to be worried, I think all of us here have been there. It can be really scary facing any disease, and one you're going to end up with for the rest of your life, it's pretty life altering.

We're all here for you! I have found a lot of support here and learned a lot about this disease. I got a definite diagnosis from my rheumatologist just last month. I knew it was coming, but it still hit me that I'm going to have to deal with this. But now that I know, I know what needs to be done.


I hope you get a diagnosis soon. Sounds like you have a great doc who was VERY thorough. That's a good start. I love dogs, and can imagine that it may be difficult taking care of 3 when you aren't feeling well. You'll find on this forum we are often giving each other a gentle push to get help when needed. We all seem to be the stubborn type :-) that don't want to ask for help.

Never hesitate to come here and ask for help, ideas, advice whatever - there's also an emotional support area if you ever need it.

If you are diagnosed with PsA, I hope you will visit often and share your ideas, get ideas as I've found every discussion to be useful and helpful.

Wishing you the best and hope you will keep us updated. We are all here for you.



What a positive response ! I love it Anna - I needed to read that today ! Thanks

Anna said:

Hi Rebecca and welcome to this site!

I understand you being frightened. We all were/are at some point or another. I went from crawling to the bathroom to hiking the High Sierras. There is always hope.

My story is here


Best of luck in finding the right treatment!