New member - awaiting diagnosis

Welcome Greetings and Introductions
1

Hi, there!

My name is Rebecca and I am 41 years old. A few visits to the dr., some conversations with family members and a lot of research has led me to this website which seems like a treasure trove of info and insight into Psoriatic Arthritis!

I guess I'll just launch right into my symptoms in the hopes that some of you might have some insight for me. :)

- generally in great health til 40...all down hill from there, they say...haha! :)

- lower back pain and neck problems started over a year ago; physio helped with this

- three months ago awoke with stiffness in my left index finger; came and went from four fingers for a month; I ignored it until one evening when the stiffness started in my right wrist and I ended up with my hand in a "claw" for 12 hours.

- the same week as the initial stiffness in finger, I got a weird, clear, bumpy rash over my whole face; felt like windburn, but was clear, not red; was very itchy and my eyes got puffy and itchy and extremely dry around them; lasted for 3-4 days and then went away completed on own; has not recurred

- dr.'s very first question was "Do you have psoriasis?" due to my ridged nails. I have never had skin psoriasis, so I thought he was way off; put me on Naproxen and ordered bloodwork.

- bloodwork came back showing normal CSR level and all else normal. Negative for Rheum. Factor. X-ray of hands looked fine.

- a couple weeks later, stiffness and pain started in one toe on my right foot; swollen on top and tender to step on; noticed myself often feeling quite fatigued

- another week passed and I awoke with the left joint in my jaw stiff and very painful; barely able to open mouth; back to dr.; he sent me to dentist to make sure it wasn't a dental issue (it wasn't); given painkiller (Tordal); lasted 1.5 days and then went away

Now:

- the joint stiffness has seemed to "settle in" in a few places for the past couple of weeks: four fingers and two toes; especially stiff and uncomfortable (and increasingly, in pain) in my fingers and feet in the morning - when I first back up I feel 101 rather than 41; I limp and can barely hold my toothbrush - I'm quite a sight;

- the pain now feels like more than joints; tendons and muscles involved? Hands feel "crampy", I thinking when I do too much

- occasional back pain in lower, lefthand side

- I've been off work from substitute teaching for over a month (I'm fortunate that this is an option for our family)

- I'm taking Naproxen twice a day and painkiller only when it's very bad

- awaiting results re: Lupus, thyroid, and Lyme Disease

- I requested a referral to dermatologist to look at my nails

- I have upcoming physio and reflexologist appts. in hopes of getting some relief

- using ice first thing in the a.m. and hot wax for relief

- I have found out that two close relatives have skin psoriasis

- have been told the waitlist to see a Rheumatologist here in Newfoundland is over a year. :( My husband and I have decided that we will probably try and get an appt. elsewhere in Canada or the US if this is the case, once all bloodwork is back...

Phew! Thanks for letting me vent!! If anyone can offer any insight, it would be greatly appreciated. I have a feeling getting a certain diagnosis (and, therefore, appropriate treatment) is going to take awhile...

2

Welcome, Rebecca!

What a list of symptoms! What you describe sounds similar to me before getting a diagnosis at age 36 after a lifetime of issues. My bloodwork comes back negative for inflammation even when my ankles are so swollen I can barely walk (like they were at my first rheumy visit, and I got bloodwork done immediately afterwards!). I do have psoriasis, so I did have that "on my side" when it came to getting diagnosis. I think it's wonderful that you're looking into PsA as you journey along to official diagnosis - getting support through the process whether or not the end result is PsA is always a good thing.

3

We're not into internet diagnoses here, but many of the symptoms you mention certainly sound familiar to me. With close relatives with PsO, strange skin "events", nail dystrophy, tendon pain as well as joint pain, and entire fingers/toes that are stiff/swollen, PsA certainly needs to be ruled out.

As Nym says, the bloodwork for inflammation often shows nothing noteworthy with PsA. Something like 52% of people with PsA have inflammation markers in the normal range. I am in that group of people too. So if your GP dismisses PsA as a possibility, keep that one in mind. Mine never considered inflammatory arthritis as a possibility because my inflammatory markers were never very elevated.

Getting a solid diagnosis is key to getting the right treatment. With a wait for a rheumatologist of six to nine months in my province, I went stateside and got a diagnosis of PsA before I saw a rheum here in Canada. (I had already self-diagnosed, correctly, by the time I got to the US rheumatologist.) That didn't help me much in terms of being able to start treatment, because I couldn't fill an American script here, but it meant that when I did get the rheum appointment here, I was more certain that the diagnosis was correct. If I were doing it again, I would employ a slightly different strategy -- PM me if you want to discuss this.

One of the things that we do know for sure (from Gladman and Chandran's book) is that early and aggressive treatment gives the best long-term outcome if what you have turns out to be PsA.

Good luck with your search for answers, and with symptom relief until you get them.

4

Hi there Rebecca, welcome to our community.

That is quite a list of symptoms that you've noted but I guess, yes, a lot of it feels very recognisable. I suspect my early symptoms ran over a period of many years and I never made any connections until after diagnosis, in fact it was my rheumatologist who diagnosed the psoriasis even though years before I'd seen two dermatologists with skin issues, including my 'funny' thumb nail. I'm also in the group where my bloodwork is insignificant.

I hope you're able to follow up on getting a diagnosis sooner than a year.

5

Hi Rebecca - Welcome (from another Rebecca). It certainly sounds likely that your symptoms could be as you suspect, but as my mates say, you need a solid diagnosis.

I would certainly recommend that you see if you can get to a Rheumy as soon as possible, even if you have to travel. I have to travel over 500 km each way to see mine - but it is worth it. I am relatively newly diagnosed and it has taken 18 months to get my meds sorted to a place where I feel good..

Good luck with your quest.

6

Thanks to all of you lovely people for taking the time to read my post and offer your input. Much appreciated. We are taking a family trip to Boston at the end of June and now I’m thinking I might try and book an appointment with a rheumatologist there…Seenie, I will pm you. Thanks, again. I hope you all are having a good day. :slight_smile: