In Denial!

So I am new…last wk at my first rheumatologist appt. I was diagnosed with Psoriatic Arthritis. I was shocked! I thought I was going to go in there and he was going to say…your fine-its probably anxiety or in your mind. But instead he saw my hands first thing and said-wow are your hands always that swollen. They were especially red, swollen and stiff. My mcp joints are the worst for some reason. That’s where I had my first major symptom. Back in Dec. In between the mcp joint was huge and I couldn’t use my hand without almost crying it hurt so bad. So I went to urgent care. Xrays were good. Which I knew because I didn’t injure myself. He said it looked like synovitis which at the time I had no idea what that was. He referred me to my dr now. And apparently according to my rheum. “Deserves a pat on the back” because he already had me labeled PsA on his chart.
Anyways I just keep thinking-maybe they are wrong. But then I looked online and saw that he is a board certified rheumatologist with 34 years experience in this field. So it seems unlikely. He took xrays and said hopefully there is no damage yet and if there isn’t I will have several options regarding meds. I’m pretty sure that’s the case. I started feeling tendinitis symptoms a little over a year ago. And this past November started feeling joint pain in my knees and then that finger. And now its sort of everywhere occasionally. Just like an overall ache or sometimes throbbing in different parts. I have pain in my heel/ankle when I walk. Feels super tight. Dr said it was probably my achilles tendon?! Seems like the tendinitis is the worst part. I also feel it in my wrists, shoulder and elbows. Anyways sorry for rambling…but I still have so many questions. Like maybe it will stay mild. I am just not a medicine person. Like no antibiotics in the last 7+ years, never had a flu shot. And if I start those meds I think he wants me to start that will all change. I have a super great immune system and never get sick. No stomach viruses (only had two in my life) etc…guess that will change too!! I’m just so young…27…I can’t imagine feeling like I have a barrier in my life to stop me from doing the things I wanna do? Uhh no fun.

Hi Karynailes,

I'm new to this site also, but have been dealing with chronic autoimmune issues since 2007. Getting a new diagnosis is scary, especially because there is no guarantee on how it will progress or not progress. I unfortunately started to suffer with severe anxiety because of researching my condition online. After becoming dependent on anti-anxiety meds, I made a decision to kick the anxiety meds and only refer to reputable updated info. Today, I still battle with PsA, but I choose to keep seeking health rather than give up and allow this to control my life. Right now is the worst I have felt since my diagnosis, but I am still determined. I want to be a woman who happens to have Psoriatic Arthritis, not Psoriatic Arthritis who happens to be a woman. Right now you feel awful because of the physical pain, and you emotions will be all over the place, and being your age I can see why, but know that so many have dealt with this since their 20's or even earlier, and are doing well. Remember, studies are based on averages, not guarantees and I personally find searching out others who are proactive in their care keeps me upbeat. I wish you all the best, and in the short time I have joined this site, I have found so much experience, knowledge and hope.

Hi
I am new here too. Sorry to hear about your troubles. Reading your story made me wish I could tell you it’s no big deal. I was your age when it started for me as well. Look on the bright side, it took me five years to find this awesome website but you’re already here. I’m sure everyone here has their own experiences and opinions but my advice to you is do not let them get you hooked on the steroids, from what I can tell that just means they really aren’t sure what to do. Stay away from the methotrexate I think it’s a waste of time and too dangerous. Get a good biologic like Humira and stay with it. And stay here! If you haven’t already you may find it gets hard trying to find anyone who can relate with what your facing and I have to say just reading these discussions and hearing people talk about the things that in my life I’m the only one who knows about has been some of best medicine I’ve ever taken. Good luck

I understand completly what you are going through, I just turned 28 this past November and was only Diagnosed in October with PsA...my pain started in June with morning stifness and back pain...after a few months it moved onto one finger in my hand and then two then more back pain, followed by swelling in my knee and then pain and then changes in my nails and severe pain in my feet and ankles and before I knew it I was having a full on flare! and I was so scared because I had no idea what was going on, so after some internet research I diagnosed my own self with PsA and when I finally met with my rhumey and he gave me the offical label of PsA I was actually somewhat relieved at first because I finally at least knew what in the world was going on with me, but after it sunk in and I had time to think about it I was beside myself, I couldnt believe that at 27 I was dealing with this! I started meds the same night I met with my rhumey I was already in so much pain I was willing to do whatever it took to stop it.

its been almost 4 months now since I was first diagnosed and they have been so hard, life has definatly changed in many ways and I have overcome so many struggles since then, I am finally seeing relief and improvements in my symptoms, I am in less pain and have less swelling and I appreciate every good day I have, You will have challenges and struggles to overcome coming up in the future but the most important thing for you to always remember is that you can make it through anything and no matter what always keep you head up! this page has been a God send to me it has helped me when I had silly questions and when i had big ones, the people on here are so amazing and supportive, and they are all here for the same thing.

I wish you all the best and just know whenever you need to talk or vent we are always hear!

Yea he wanted me to take a dose of steroids when I was in the office. But I declined. And he also said methotrexate wasn’t as useful and the others. And that one scares me. So I’m leaning towards the others. Just curious by the time yall had your xrays done-was there already joint damage. I just don’t feel like mine would be damaged already. And my pain isn’t really that bad. Although my dr did say sometimes when it wears on you for a while you don’t even realize that you are having pain it just feels normal. Not saying I agree…mine is just more of an annoyance…I think cause its not a constant. One night my should was hurting so bad though I cried myself to sleep. It hurt to breathe. But by morning it was a little better and then just disappeared. Also I don’t think it was the joint. It felt deeper. I’m sure related though bc I have had no injury. Idk…most of my pain is when I wake in the middle of the night. And I get stiff…even If I just sit for 20 minutes. Glad to know there are others like me I can relate too. :slight_smile:

It is scary, I admit it, I am scared about it too. However, you have to stay positive or it makes it worse. The more you worry, the more stress you cause yourself and as pretty much everyone here can tell you, the stress makes it ten times worse. I was only diagnosed in November but I was so relieved to have a diagnosis, and to have someone who believed me. I even started to feel better before my meds kicked in. I hadn't realized how much I was stressing about not knowing what was happening and feeling like no one believed me when I told them the extent of the pain. I don't like to complain about how I feel so when others asked me how I was doing, I would always say things like "ok" or "fine" because I didn't want them to think I was being a 'Debbie Downer' so I would just keep it to myself. Hubby didn't even realize how bad it was until my Rheumy gave me the test results with my SAID rates and such.

Long story short, now that I have this diagnosis, I can talk with others and work together to find out what will work for me. This site is wonderful and I have learned so much from it.


Welcome to the site. The bad news is you've been diagnosed with PsA; the good news you have a diagnosis, it's very treatable and things will get better.

On your question about x-rays, I was lucky and they didn't show any significant damage (my rheumy said we caught it early). Try not too worry until you have something to worry about (we all know how hard that is). There are many who aren't that lucky, but I think the awareness of the disease is increasing and people (including me) are getting diagnosed in the earlier stages (although in hindsight, I think I've had it 10+ years, but it's been mild, relatively speaking).

PsA can feel like a lot of different things (I think that's why it's so difficult to get a diagnosis). I went a few months with a diagnoses of tendonitis, bursitis, etc. before the PsA diagnosis (it kept moving around from joint to joint; starting up for no apparent rhyme or reason, then going away out of nowhere and popping up somewhere else) and there were many nights I would move a little or change position and the pain was so excruciating it woke me up, and woke my husband up when I screamed or started crying.

I hope your treatments start soon. In the meantime, there's lots of great information here, the National Psoriasis Foundation website (psoriasis.org) and from that there is also a community support link you can sign up for (inspire.com). Good Luck and again Welcome!


karynailes1984 said:

Just curious by the time yall had your xrays done-was there already joint damage. I just don't feel like mine would be damaged already.
One night my should was hurting so bad though I cried myself to sleep. It hurt to breathe. But by morning it was a little better and then just disappeared. Also I don't think it was the joint. It felt deeper.

Welcome!
Denial is a great state to live in, but it isn't so helpful. :) I talk a lot about my journey to acceptance of the changes in my life in my blog (on here or at rannygahoots.blogspot.com ). I was diagnosed last year at age 36 after a lifetime (literally) of chronic pain and painful joints. I had x-rays in February 2011 that showed a little damage, x-rays in April that showed further damage to the same joints, and x-rays in September that showed even more damage and fusions to my SI joints (I have ankylosing spondylitis as well as PsA). I was finally able to start treatment - Enbrel - 7 weeks ago. My rheumy wants me on high dose methotrexate as well, but I have liver issues and can't take mtx at this point.

I, too, was a person who didn't take meds, rarely got sick, etc. etc. etc. We are a "mindful living" kind of family and don't have chemicals in our household, eat mostly organic and local, don't eat many processed foods, etc. etc. etc. The idea of injecting myself with tumor necrosis factor drugs took a lot of getting used to.

In my case, I think my diagnosis came of more than a relief than a sentence. I finally had an answer to my pain, stiffness and fatigue. It wasn't all in my mind as many doctors had told me over the years. With a diagnosis comes a chance to improve your life and feel better than you are now. You may be living with a new normal, but that normal may change with life changes. Changes in diet (some people with PsA find being gluten-free helps, some find being nightshade-free helps, some find eliminating dairy to be useful, some find a combination works best for them), balancing movement with rest, and being more present in your body and listening to your body can be very useful tools.

I wish you well on this journey - and am glad you found this community, as there are many wonderful, supportive people here!

I understand the denial part. I keep thinking I'm going to wake up in the morning not hurt and it will be gone. Everyday I feel good, I'm waiting to see what will come next. I understand about going to the doctor and every symptom being treated separately. Swollen fingers- must have injured it. Psoriasis and ezcema. Constant fatigue- must be because I am being treated for depression and anxiety- just get up and get moving, a variety of pain pills to get rid of the pain in my heal- plantar faciatis, pain in my side- must be a strain you don't remember- turned out to be costocondritis- after every test known to man- finally diagnosed when I ended up in the emergency room because of the pain. Pain with each step for almost 3 mnonths- once again all kinds of tests- probably a stress fracture we couldn't see on the xrays. I was so lucky when my GP sent me to the to a podiatrist- he finally sent me for blood work to test for gout and my numbers came up showing I should be looked at. He said he was concerned it might be PsA. Finally got to see a rheumatologist- she really listened and asked me a million questions. She gave me the diagnosis but sent me for bloodwork because she thinks there may be something else going on. So glad to know I was not a hypochondriac. Talking Vimovo for a week- haven't seen many changes- still bad and okay days. So glad to be able to tell my whole story- most people say oh I'm sorry but they really don't want to hear. Thanks for listening.

Hi there

I realize your post is from last month but I felt compelled to write to you. I was first diagnosed with PsA when I was 29. The doctor told me that's what I had and then asked me if I was planning on having a family. I had only been married a year and wanted kids at some point but not then. He advised I should get started asap and then go on the meds. I recall walking out of his office really angry and basically refusing to believe him. I thought he had jumped to that conclusion purely based on the fact I had psoriasis since I was 20, so I decided not to believe him. I started an NSAID for the swollen knee and after about 6 months I felt pretty good though never back to my old self.

Fast forward to age 36, several months after giving birth to my 2nd child. While I'd always had a problem with a swollen right knee, suddenly I had the mother of all flares and couldn't even walk. I was breastfeeding at the time so when my new doctor said I definitely had PsA and needed to stop so I could start treating it, I proved that I was still in denial by continuing to breastfeed, not treat it, and basically have a horrible first year with my new child.

That's how long it took for me to finally accept that I had this damned disease and to start treating it seriously. I am on Methotrexate and Sulfasalazine and have improved around 60-70%. Like you I was someone who avoided medication unless I was in dire need, but finally I had to accept that I could live a life where I shuffled along in pain, and maybe end up with permanent joint damage, or I could accept my fears and try to improve my quality of life.

I have heard that sometimes when people treat the disease aggressively from the first signs, it can go into permanent remission. I wonder if I had done the same at age 29 could I have stopped it in its tracks? Maybe you will be able to.

Good luck and I hope you can find some relief soon..

Well I went to my 1st follow up visit with my rheumy today. I left a little confused at my first appointment she told me I had PSA but wanted to run more bloodwork because she was concerned that I also had Sjogren's. When I went today she confirmed the Sjogrens with the blood test and also said I have fibromylgia. However, she did not confirm the PSA. She said the treatment for Sjogren's and PSA is the same and is putting me on Paquniel (sp?). Has anyone else had this type of experience- should I just rule out the PSA with positive thoughts and assume I don't have it or do you think that there is still that possibility of PSA. How do the symptoms of Sjogren's differ from PSA aside from the lack of deterioration?

All these posts contain something that I can closely relate to. It’s 4 months since my diagnosis and the shock has now passed. It had a profound impact on me. I am on MTX and should start to see the positive effects of it about now.- the rheumatologist believes my energy levels should return and life should feel easier. I hope so - it’s been very tough. I wish you all the best. this is a horrible disease but I truly believe at your age and with the right medication, life can be pretty much normal for you…just a bit of adaptation required sometimes. All the best. Paul

I know how it hit me I had a lump on the top of my hand. Then it got worse I couldn't rise my arm then putting on my blouse then even going down stairs and walking hurt, Then I went to a rhmy and he noticed psoraises and said PsA

It was jan 2010 started me on shot humira. It was not helping I got so depressed and discouraged. I was losing 2 lbs a month and I am not heavy. In May started me on mtx and increased dozes It finally kick in and helped alittle at a time around sept. 2010 I am now on humira shot every 2 weeks and 30 mg Mtx every week. I feel so much better.

It is important to take folic acid 1 mg every day. It help reactions of Mtx,. I also freeze skin before shot. Hang in there it takes time to find the right meicine and dr, There are alot o new medicine out and differnt combinations,

I know it is easier said than done but the stress and depresson does not help PsA. Try to take it a day at a time.