Mad at PsA and have to get this out

General
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I was diagnosed with PsA last year but started having trouble about 5 yrs ago. Originally I believe my doctor took way too long to refer me to someone else which makes me mad. I had thought that the inflammation in my knuckle was an injury and would just take time. It never went away but got worse.

I then saw a Rhumy that never diagnosed me but put me on meds and tried a cortizone shot to help the inflammation. I stopped going to him because I felt he didn't know what he was doing. I felt like an experiment subject. He made me mad. No one was helping me.

Finally last year I saw a new Rhumy who is great so far and he actually gave a name to what I have. Now I live in fear of my life never being the same. I'm afraid I will have to find a new job because I feel my hand is getting worse. I have an appointment next week and will have to update him.

Now I'm mad because another finger on my hand recently swelled up despite the meds. I can only presume it's the PsA and I'm really getting pissed off at it. I'm having trouble typing this now. I already have a deformed finger that I tend to hide. I don't tell many people about the PsA. I really don't think most would understand.

I raised my son as a single mother for many years and was looking forward to these years being my time to live how I want. Now it looks like this won't be possible. That makes me really mad.

I also feel like if I had known that Psoriasis or PsA was even a possibility because of family history...then I could have caught this sooner. Not having this knowledge makes me mad too. I'm mad at everything now but don't really express it to anyone.

Now I also feel guilt that I will have passed this along to my son or even grand children one day. I'm only 43 yrs old. I feel like I'll never meet anyone now because I'm defective. Before another finger swelled up recently I thought I'd be able to deal with this but now I'm not so sure.

I don't know how to deal anymore. None of my friends understand and I can't talk about it because I don't want to feel like an old diseased woman.

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We understand what you are going through. It is taking a toll on me too. I relate to fear of passing this to your child. I have 3, glad I had them young cause I don’t think I would have any if I was diagnosed younger.

Work is another story, I haven’t been able to work a full week since October. My FMLA is running out and am scared I may lose it. Im hopeful that once its under control i will be me again.

Im glad you found a doc that listens to you. That is always a plus.

Your anger is real and im happy to hear you are letting it out.

Hang in there. Hugs

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I think we all get angry/weepy with this stupid disease so you’re not alone. On the hereditary thing, my father had psoriasis hence my link however he went on to have 2 other children with a differen wife and they don’t have P or PsA so it’s just a bit random it would appear.

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I am so sorry you are having a rough time right now Dini. Boy do I know where you are coming form. Been there done that and don't want a tee shirt! Boy did I show my age with that! Know you are not alone. We have all been or still are there. I take an antidepressant, I talk to a therapist, I do my work on it and I leave the rest to God. Had I known I had it would I have not had children? No I would have anyway. Everybody inherits something and this isn't even the worst out there. I have loved my children and am a much better person because of them. I wouldn't have missed it for the world and what a gift to the world they have been . I am blessed. Know this too will pass if you are able to process it. My prayers are with you and I am sending you warm, gentle hugs.

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Dini, I'm sorry you have to go through this sucky disease. I'm the same age as you, 43, and have 3 kiddos. I started having problems about 5-6 years ago. I met my future hubby 3 years ago, and even though I have problems and was broken, he loved me anyway. You are not unlovable just because of PsA!

It's a normal part of the grieving process to be enraged at something so life changing. As far as the kids, I have to admit that I'm scared for them and do feel some guilt...but everybody inherits something. We as humans are copies of copies of copies, etc. There are going to be glitches in genetic codes, possible conditions or diseases, but that doesn't mean your son will get this.

Glad you found a better doc. That makes things a whole lot better. Hang in there, people are thinking of you and sending you kind thoughts :-)

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Dini, Now you know what it is. There are treatments to manage this thing. I am 43 as well and recently realized I may have to transition to some different kind of work. I am am scared as well. It is very normal to be mad at the amount of time it takes to find the medicine that will work for you. I was very angry a short while ago and realized that all the stress and anger was making things worse. Slow down and breathe. I have a therapist now to help me sort through my anger and confusion about the unknown. It is helping. One thing at a time. This is a great place to express your feelings with people who actually understand what you are going through.

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Hi Dini!! U poor thing! No wonder ur angry waiting so long for a diagnosis. I think ur very brave to have kept persisting with the health care system coz it’s so easy to lose faith in doctors and give up. I was diagnosed around 3 months ago and it was relatively quickly and that was only because a different GP was on instead if my own. But honestly I thought I was losing my mind!
I understand what ur going through with ur fingers swelling and being really sore!! It’s so tough to work especially when it’s ur dominant hand. It’s frustrating and it make me wonder if ill ever go a day pain free.
I also feel like a 100 year old woman and I’m only 26. And I know what it’s like to feel alone and that u can’t really talk to anyone about it coz they won’t understand and u don’t want to complain to those u love. But just know that ur not alone and that u have us.

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Dini I am 46...had arthritis from my teens (so no kids in case I passed it on) and only discovered I had PsA after not going to Rhumy for some time, as I felt they didn't really help, but when I did go back Rhumy put me onto PsA dept (more than 20 years had passed from initial diagnosis). Medication (Sulpha) is what I get from Rhumy but on here I get understanding from kindred spirits. I can moan on here and get some empathy from individuals experiencing similar woes....unlike the sympathy I get from the uninitiated. We sort of know what you are going through on here and that makes such a difference. I was in India for xmas and new year and kept really well whilst I was there but back in Scotland now and suffering again ...pos due to weather... so up and down the level of good health goes.....If you accept that you may fair better...and if not come on here and vent with the kindred spirits, and in the mean time good luck my friend

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Thanks everyone for sharing your thoughts.I know I still have to come to terms with the limitations from PsA and essentially change my life plans.

Thanks so much for listening :)

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I know where you are coming from. PsA Diagnosed in 2001 but have had symptoms from many years. I am 49 and i am sorry to say but I had to take disability retirement. It was a hard decision, but necessary. My daughter who is 23 is showing signs of disease. She is scared because she has watched me. This shouldn’t happen. As I am typing my mom is in hospital with kidney failure and I can’t get up to go see her today. I just want to cry.

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Tammy I’m so sorry, there are just times when you need so desperately to go see family when they are ill, and sometimes you just can’t. It’s very hard.

Also, as a more positive note, my dad had undiagnosed chronic joint pain for 20 years before I had any issues - initially when i realised what I had and that it was probably the same thing, I was sure I’d have a life that couldn’t contribute to my family the way I wanted, and was terrified.

Us youngsters ( I mean diagnosed within the last 5 years, age is irrelevant), are so lucky - there are a very few who dont find something that works, and the biologics in general are amazing.

I hope you, your daughter, and Dini, get some successful treatment. Always the best option, regardless of how zen you can be!

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Reading this post, I once again realize just how lucky I am. I broke my hip in Apr. of last year, then the torment began. In June, I was feeling so very sick, aching everywhere, but without symptoms that I could realistically take to the Dr. I pu it off, not wanting to "bother" him. But finally, I could not get out of bed. Being 42, and a single mother myself, I made the appt., as I could surely not torment myself or my son any longer.

I have a long history with docs, a I have a cardiac condition that began when I was 20, that has left me disabled for half of my life. Many had treated me like an "experiment" too, so I tend to be a bit leary. But my doc took me seriously, and right away, got the ball rolling to see a Rheumy. But that appt. was 3 mos. out. My GP called often, started me on Pred., and truly seemed to care. He sent notes to the Rheumy, working to get me in sooner. 2 weeks before that appt., te Rheumy cancelled, he was out "indefinitely," and the cycle started all over again. New Rheumy, appt. 2 mos. out. She finally got me in, and altho not "warm and fuzzy," she really jumped on board! Within days, I had a dx and a treatment plan. So far, it's not working, but saw her the other day, and she's adding meds to my fight, and I have faith it's going to work! I have to believe it, that gives me hope to continue in this battle.

I guess, all in all, I feel blessed to be able to FIGHT. I have many friends (again, blessed) who support me, who love me, even tho they don't understand this disease. I don't "live the disease," I live with it. They understand when I am too sick to see them, or I shed hair all over their car, from the treatment. They offer to shave my head, and we laugh. The computer has become a great tool, tho I'm technologically challenged, because I can stay in touch, even when I don't feel well enough to see them, or talk on the phone.

Hang in there. I know you don't know me, but it sounds like our lives are similar, and I am here. I too, am here because I needed knowledge and support. And altho I don't know much, I am happy to share what I find out, and listen. We are all in this together. Have a wonderful day. You can do it!

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I'm there with you. I am suffering with PsA as well. I just spoke to my wife this morning about accelerating our plans to fully retire and try to have at least a few quality golden years. My PsA showed up a little over a year ago in my knees and it quickly traveled into my left hand. Now the fingers on my left hand are only semi functional and I live with continuous sharp pains in my wrist both day and night. The pain just recently has shown up in my right hand and I can see the handwriting on the wall. It won't be long before both hands are totally disabled. I am changing my diet in hopes that the pain from flareups can be controlled. I wish I had some good advice for you but I don't have my arms around the issue. The folks participating in this forum are very good and most likely they can provide you some support. There are a lot of people out there suffering from this condition.

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PsA is still a relatively unnoticed illness that needs more attention given to it, seriously. Many of our current doctors need a refresher course (or new course) on PsA so they can spot the symptoms early on.

As for your kids, do all you can to guide their growth in such a way to not aggravate or trigger the illness. Good luck!

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Oh, Dini, we all know where you are coming from. Getting it off your chest is good, so you just go right ahead! I am angry too about the many years of doctors telling me to to just take ibuprofen and get new orthotics and exercise more and eat properly. As if my aches and pains were my own fault. I’m angry with myself for accepting and trusting their professional advice, despite a gut feeling that there was more to this than they thought. It wasn’t until I got really angry and took matters into my own hands that I started to get answers and I was diagnosed. I’m angry that got angry twenty years too late.

I am VERY angry with my Mother’s family physician. Mother had a really nasty, flaky, inflamed, itchy rash in her ears. Her doc did nothing besides saying it was eczema, and letting it go. After Mother’s death, when my rheumie sent me to the dermie, she asked about family history of skin problems. I told her about the ear “eczema”, and she declared my Mother to have had psoriasis. Hmmmm…mother also had joint complaints and scalp crusts. I’m sure my Mother had PsA as well. I am really angry with her doctor for not bothering to figure out what was wrong with my Mother.

Had he taken the trouble, my own doctors might have realized that my toenail “fungus” was psoriasis. And that my anal itch was inverse psoriasis, not a “hygiene problem”. And that my joint pain was PsA, not merely the aches of being slightly over ideal weight. And they might have realized that twenty years ago, before I needed two total knee replacements and now a hip replacement.

Yes, I’m angry with Mom’s doc, my docs, and (most of all) myself. Thank you, Dini, for inspiring me to get that off my chest! How are you feeling these days?

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Oh I know the frustration of the ears. I have scalp psoriasis...which is actually worse in my ears. I was told it going into the ears is normal. I've lost a lot of faith in doctors too. I think when they're not sure they don't want to admit it. Maybe that's part of the problem.

I think the dermatologist should inform people about PsA...to know that it's a possibility so people can pay attention to symptoms. The Ps itself seems to be popping up in new area's lately.

Thanks. It is nice to know I'm not alone.

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Oh, Dini, you have plenty of company in the PsA boat! We’ve all felt that anger and disappointment. I agree with your saying that dermies should make people vigilant for PsA. In my case, though, my rheumatologist discovered my psoriasis after I presented with erosions! Quite a shock, discovering I have psoriasis as well as an inflammatory arthritis! When I tell people I have Ps, they look at me in amazement, as I have always had a really good complexion. Just goes to show … LOL!
Hope you’re feeling a bit better now.

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Just know you are not alone! This site is wonderful so do not hesitate to vent. We all understand. As for right now, breath deep and try to relax. Stress makes things worse.