I was diagnosed about 5 weeks ago at the age of 27.
Since I was about 21 I’ve been struggling with stiffness in my knees and ankles in the mornings or after periods of rest. Around the same time I was diagnosed with plantar fasciitis and peroneal tendonitis. I’ve never been an athlete but my podiatrist said some people just had a predisposition and I’d just have to live with it. Then came stiffness in my hips and visits to a chiropractor who was just as unhelpful.
A few months ago, I suddenly developed pain in my thoracic spine and ribs that was so bad I woke up yelping and crying. After a few weeks of this, I followed up with my PCP who suspected lupus and sent me to a rheumatologist. The rheumatologist did about a thousand x-rays and a million blood tests. High ESR and CRP, negative for RA factor and ANAs. The x-rays looked ok. She noticed pitting in my nails and is pretty sure I have psoriatic arthritis.
I’m struggling a bit with this diagnosis because I’ve been told for years and years I have eczema but I’ve never gotten a psoriasis diagnosis. She said some people get the arthritis first, or maybe I’ve been misdiagnosed all these years, or maybe it’s just very mild psoriasis. Is this normal? From the reading I’ve been doing everything seems to fit like a puzzle piece except this.
My second appointment with my rheumatologist is this Thursday and I’m not even sure what questions I should be asking or what to expect next.
Sorry for such a long intro! I’ve been looking for someone to talk to who actually understands these struggles.
Hi Bluebell,
Welcome, though I’m sorry you even have a need to find us. I’m very glad you have a doctor who is being proactive at such a young age though. I have come across many stories similar to your’s, and it seems a lot of inflammatory arthritis begins strangely, and is hard to diagnosis initially.
For comparison, I’m 45 but have been struggling since my mid-20s when my knees began falling apart for no reason (no injuries). I was referred to a rheumatologist at age 37 after my 6th knee surgery, when my Orthopedic surgeon told me no amount of youth sports or wear-and-tear can explain the weirdness he’ kept seeing in my bad knee. Even now, I have negative blood work, no psoriasis, no nail pitting, but loads of morning stiffness (all day stiffness sometimes), major damage in my knees (9 knee surgeries, more to come!), wrists that swell for no rhyme/reason and not at the same time. I’m stuck with a diagnosis of “Undifferentiated Inflammatory Arthritis” though my Dr thinks the psoriasis might show up eventually to narrow the diagnosis to PsA. I struggle mostly with my knees and the overall joint stiffness, though I stretch almost daily for 45-60 minutes—though the next morning is like starting over, as if I hadn’t stretched in a week. I’m lucky to have relationships with 2 wonderful physical therapists over the years who taught me a lot to save time, money, pain, and frequent visits (ha)----and they keep helping whenever I need it.
I mention all of that to show you that even without concrete answers and a concrete diagnosis, there are still things your Dr can do to start you on the right path to less pain, minimal joint damage, and a hopeful future where you can still live the way you want. I finally started a medication that may/may not be helping so far, but at least I know we’re being proactive. Definitely don’t settle for “you just have to live with it”----advocate for yourself whenever and wherever you can. I wish someone had told me sooner to stop blaming my stiffness and sore knees on just bad luck.
Keep asking questions here too. The people are wonderfully helpful and supportive. Best of luck to you.
I am sorry you have this diagnosis, or tentative diagnosis, either way it’s not something anyone would want. However, a BIG ‘however’ - the sooner PsA is diagnosed and treated the better in terms of outcome.
We do indeed understand your struggles and part of the struggle is that PsA is a confusing disease. You may find it encouraging to know that, although my PsA has been severe at times, one confusing aspect - in a good way - is that it often lies low and barely affects me, especially since starting treatment. Additionally my rheumy thinks I may have had it at least at what she calls ‘background level’ since the first sign of joint swelling when I was 16 (I was diagnosed at 56).
Not everyone with PsA has psoriasis or a history of psoriasis. However about 80% of people with PsA will show changes to their nails. Some folks here say that PsA shone a new light on what they had previously dismissed as ‘dandruff’. And psoriasis can be very difficult to recognise. Last time I had a skin flare-up a whole team of dermatologists considered about 6 different skin conditions before deciding on psoriasis despite a history of the condition, and eczema was on the list of possibilities.
It sounds to me as if you have a good rheumy who is in possession of a very efficient thinking cap, a proper inflammatory arthritis detective. Ask her about treatment for sure. In general many of us advocate ‘aggressive’ treatment i.e. biologics. Don’t be frightened of that word, it does seem that it’s the disease they get aggressive with, not the whole body.
So yep, I’d ask how she’s thinking in terms of treatment pathways. For example, if she recommends that you start ‘traditional DMARDs’ e.g. Methotrexate, what would be the next step if it didn’t help sufficiently and when would a ‘next step’ be considered.
You may be thinking in terms of a referral to dermatology for reassessment of the skin condition too.
And the other thing is self-management. There are lots of things that can be done to help with pain, mobility and fatigue and some of them help considerably more than you might expect. Keeping moving is key amongst those things.
Welcome! I hope that things get easier for you from here on. It can be a bit of a journey but if you have PsA there’s every reason to expect that you’ll get to grips with the condition and continue to live life to the full.
Welcome Bluebell! Sorry that you had to find us, but we are glad you are here
Although I don’t think it’s typical to develop PsA without frank Psoriasis, it is certainly common enough (I think something like 15% don’t develop Psoriasis until they get the arthritis, or after).
I started with a few random odd events - costochondritis (thats the rib pain you are talking about), tennis elbow, etc, and had never had Psoriasis, though my sister had it.
A number of months later, I got a couple of tiny patches on my knees and elbows - didn’t even look that typical, it was only because I was familiar with it from my sister that it even occurred to me that it was likely Psoriasis. Then the arthritis part hit me full force, and the Psoriasis cleared up. Thats when I wen’t to my GP. Despite the Psoriasis looking gone to me, the doc ordered a punch biopsy because she said it permanently changes the skin, and they can see those changes in microscopic pathology. Yup, confirmed. That pitting in your nails is all I get now.
Though, in my case, my Rhuemy thinks mine is also associated with gut issues (Crohns - but not Crohns - IBD).
Honestly, at this point the treatment is so very similar, that I wouldn’t stick on the specific diagnosis (ie whether it is PsA, seronegative RA, or some other inflammatory arthritis). The great thing is that you have been diagnosed, and that means you can get treatment. The chance of good outcomes then are so much better
Thank you all for these replies! For the last several weeks I’ve been an anxiety riddled mess. I was in the ER for chest pain (chest x-ray, ekg, ultrasound) told it was probably costochondritis and to follow up with my rheumatologist and a cardiologist as well, just in case. Which has been making me even more anxious.
So far I’ve been going to physical therapy and taking idomethacin. I’ve been getting around a lot better, but I know I don’t want to be on an NSAID long term. Hopefully after my appointment we can get me on a medication I’m more comfortable with.
Hi there Bluebell, I’m fairly new to all this too, so won’t get too long and wordy here, as others more experienced than me are doing a really good job with the support here Just wanted to add that from what I have read the pitting in your finger nails is a form a psoriasis, and seems to be most commonly associated with PsA.
I’m sure you won’t be feeling very lucky at getting this diagnosis, especially when you are so young, and you would be right in thinking it isn’t at all lucky to get this sort of condition at any age… however, I’d like to say that you have been lucky to get a diagnosis this quickly… you have an answer now for all those mysterious pains and it is something that can be treated, and will now be taken seriously, believe it or not, this is a very good thing!! Many have struggled for a lot of years without a diagnosis and being led to believe they must be hypochondriacs, or something, while all the time untreated PsA has been busy damaging their joints and lives… try to hang on to the idea that now you have a diagnosis treatment can begin in all earnestness and you may well be saved from most, if not all, of that damage (which is far more difficult to treat). I do understand how this might seem a difficult thing to achieve right now… hopefully in time you will understand what I mean by this.
You have definitely found the right place for support here, many here, unfortunately, have lots of knowledge and experience, they are a fantastic bunch of fellow PsA people.
I wish you all the best for getting on the right treatment to get your PsA under control in the shortest possible time… it can and does happen.
I didn’t know I had psoriasis until 2 years ago. I had to see a dermatologist because I had been diagnosed with prostate cancer. She said that what I thought was dandruff in my hair was psoriais. It doesn’t tkae much.
My little granddaughter (6 years old) has “eczema” so bad and I sometimes think it’s a weird psoriasis. The little thing is so stiff in the morning when she wakes up–I worry she’ll have PsA someday…her mom is 26 and always depressed and telling me about her aches and pains–her hips are stiff and she never feels right…I worry so much about her and the granddaughter…well, I pretty much worry about all our kids and grandkids because I feel certain they have the genes from my husband’s side and my side, and the 6 year old even has the genes from her dad’s side of the family–a triple whammy–I so don’t want ANY of them to suffer from ANYTHING, but I guess that’s life and we’ll deal with it if it happens.
It just pains me when I hear of you young people feeling so crappy --I’m lucky that I really didn’t have too many aches and pains at your age!
I’m very glad you have a doctor who is being proactive at such a young age though. I have come across many stories similar to your’s, and it seems a lot of inflammatory arthritis begins strangely, and is hard to diagnosis initially.
--I’m lucky that I really didn’t have too many aches and pains at your age!