Hi there,
Figured I would write a little intro about myself, and a bit of how I'm feeling with this very fresh diagnosis of PsA. I've had bad skin my entire life, and docs usually chalked the dry patchy bits of skin up to eczema. Then about 12 years ago my right shoulder started to hurt. Seemingly for no reason. It stayed there for awhile, but about 8 years ago spread to my left shoulder...and then my right knee, then my left knee...then my elbows, and more recently my right wrist and thumb. For so many years I just thought this was normal - I mean I'm fairly athletic so just thought this pain was part of life and activity. General aches and pains and such. Even going to doctors I essentially got the same message and got referred for physio, massage, chiro etc. etc. No one really seemed to understand what I was feeling, or I wasn't describing it in the right way. I finally saw the right doctor, and started to describe "flares" to her that would affect my whole body almost, and come out of nowhere. These flares, and my description of the pain, along with elevated CRP finally got me a referral to a Rheumatologist.
And just last week that same Rheumatologist diagnosed me with Psoriatic Arthritis. It's sure a funny feeling hearing those words come out of someone's mouth for the first time. So now I'm not really sure what I'm feeling. On one side I feel sad, and overwhelmed and scared, and like my life has changed, and if I think about it for too long I want to cry. On the other side, I feel happy that I finally know for sure, and happy that there's a possibility that I may feel better. Like my boyfriend said to me on the weekend, the only thing that's changed is now I know and can do something about it.
Anyway, I just wanted to share a bit of my story and introduce myself. It's really nice to know there's a forum like this, to share and connect and encourage other people that are going through the same thing. I think I see hope and awesome things on the other side, but for now I am exhausted.
Thank you for listening/reading!!
xo,
Kit_Kat
Kit Kat,
We've all been there. It is an overwhelming diagnosis and the more you learn the more confusing - at least it is for me. There are lots of people on this site with some great suggestions. Take it all in and follow your heart. Your boyfriend is right - better to know than to be ignorant.
My diagnosis was similar. All my life - from the time I was eleven, I was given random diagnoses (tendonitis, TMJ, plantar fasciitis, tight IT band, a ridged nail...etc.). I have never had much problem with the skin but only rarely had a tiny dry patch on my eyelid or in my ear. Now I am past 50 and all of it came together to be finally diagnosed with the umbrella of PSA when I ached so much in so many locations at the same time that it felt like the flu. When the flare died down it settled in one or two places. Right now it is my right hand that swells the most. Very often I can't make a fist - especially when it rains.
Weather makes a difference for me. I hurt a lot when it rains. Light therapy lamps help. Stress is a for-sure "flare" inducer but most of us are stressed in one way or another so if you have a way to eliminate stress, do it!
Most people will tell you to fear the disease not the meds. I am sure they are right but I still haven't been able to get past that. I tried the Methotrexate and ended up in the hospital with a kidney infection because my immunities were suppressed. That scared the heck out of me. So now I just use the anti-inflammatories (the docs have some great ones that have worked for me, creams too) and alternative vitamin therapy. It helps but not always enough. Don't let me scare you about the meds, MANY people have had great success with the meds so I hope you will too. Give them a shot - they may really be the thing for you. But, know that you will be at more risk for infections.
Most important, don't let this diagnosis define you. It is only a condition that you live with. You will have "flares" but there will also be days and seasons that you will feel better. Keep on enjoying life every way you can. You are not alone in this.
I'll second what Just Me said Kit Kat. We have all had similar experiences It is definitely a double edged sword when you get a diagnosis. You are relieved that there is a name for this, and terrified for what the future will bring.
You are doing the right thing - having a great attitude and doing something about it. The best thing I can recommend is a book called Psoriatic Arthritis (The Facts) available on Kindle Edition. It is a slightly technical read, but gives you so much information. It was recommended by fellow member Seenie. Head over to the Book Review page for her review and other suggestions. You might look through it now and be overwhelmed and only take in a few thing, but please, if that is the case, make sure you come back in 6 - 12 months and dip in again.
I am 2 years (ish) since diagnosis. so I am still a newbie, and only recently prescribed Biologics. I am currently the best I have been in years. .
Good luck and know that if you ever need to rant and rave this is the safe place to do it. A place where you will get understanding from those who know exactly where you are coming from.
Cheers from Down Under :)
Bec
Thank you for the wonderful reply Just Me. It's such a relief to hear stories from other people that have gone through exactly what I'm going through right now. I feel lucky to have found a Rheumy who gave me a diagnosis at a young age (I'm 31), so now I can work to get things under control and just continue to live my life - knobbly knees and all :) I share your fear of the meds though. I started on Sulfasalazine a few days ago now so know I have a long wait to see if it does anything for me. Methotrexate scares me, but my Rheumy also suggested Sulfsalazine to start as I will likely be having children in the next year or so and can't do that on methotrexate. Really hoping the meds help!
Thank you again for your kind and encouraging words. Hugely appreciated :)
Just Me said:
Kit Kat,
We've all been there. It is an overwhelming diagnosis and the more you learn the more confusing - at least it is for me. There are lots of people on this site with some great suggestions. Take it all in and follow your heart. Your boyfriend is right - better to know than to be ignorant.
My diagnosis was similar. All my life - from the time I was eleven, I was given random diagnoses (tendonitis, TMJ, plantar fasciitis, tight IT band, a ridged nail...etc.). I have never had much problem with the skin but only rarely had a tiny dry patch on my eyelid or in my ear. Now I am past 50 and all of it came together to be finally diagnosed with the umbrella of PSA when I ached so much in so many locations at the same time that it felt like the flu. When the flare died down it settled in one or two places. Right now it is my right hand that swells the most. Very often I can't make a fist - especially when it rains.
Weather makes a difference for me. I hurt a lot when it rains. Light therapy lamps help. Stress is a for-sure "flare" inducer but most of us are stressed in one way or another so if you have a way to eliminate stress, do it!
Most people will tell you to fear the disease not the meds. I am sure they are right but I still haven't been able to get past that. I tried the Methotrexate and ended up in the hospital with a kidney infection because my immunities were suppressed. That scared the heck out of me. So now I just use the anti-inflammatories (the docs have some great ones that have worked for me, creams too) and alternative vitamin therapy. It helps but not always enough. Don't let me scare you about the meds, MANY people have had great success with the meds so I hope you will too. Give them a shot - they may really be the thing for you. But, know that you will be at more risk for infections.
Most important, don't let this diagnosis define you. It is only a condition that you live with. You will have "flares" but there will also be days and seasons that you will feel better. Keep on enjoying life every way you can. You are not alone in this.
Thank you for the reply Becstar! Man is it ever a double edged sword. I think I'm just processing everything still, so should probably go easy on myself - it has only been 1 week afterall since diagnosis :) I will definitely check out some of the reading material. I'm the type of person who will strive to become and expert in situations like this, otherwise the fear of the unknown becomes a little overwhelming. Glad to hear things are going well for you! I'm so happy I found this forum, for advice, venting, support, and to see how other people are dealing with PsA. What a wonderful, safe place full of incredibly friendly people! Thank you again Becstar!
Becstar said:
I'll second what Just Me said Kit Kat. We have all had similar experiences It is definitely a double edged sword when you get a diagnosis. You are relieved that there is a name for this, and terrified for what the future will bring.
You are doing the right thing - having a great attitude and doing something about it. The best thing I can recommend is a book called Psoriatic Arthritis (The Facts) available on Kindle Edition. It is a slightly technical read, but gives you so much information. It was recommended by fellow member Seenie. Head over to the Book Review page for her review and other suggestions. You might look through it now and be overwhelmed and only take in a few thing, but please, if that is the case, make sure you come back in 6 - 12 months and dip in again.
I am 2 years (ish) since diagnosis. so I am still a newbie, and only recently prescribed Biologics. I am currently the best I have been in years. .
Good luck and know that if you ever need to rant and rave this is the safe place to do it. A place where you will get understanding from those who know exactly where you are coming from.
Cheers from Down Under :)
Bec
KitKat, you are SO not alone with this! You’ve just been diagnosed, and you’re still reeling from the news. I was diagnosed almost four years ago, and there are days that I’m still reeling too. I shake my head in disbelief that I have this damned thing, and will have it for the rest of my days.
Just Me is right about our “Fear the disease, not the meds” mantra, and she’s also right that it isn’t that simple. All treatments have risks, but this disease carries a lot of risks as well (and some pretty scary ones at that). But there may come a point when you look at the relative risks of the disease, and the treatment, and you decide that it is worth paying for one set of risks with another. Each of us has to make our own decision on that one. For me, it was a no-brainer: after 20 years of undiagnosed disease, I had suffered a lot of joint destruction and my quality of life was … no, I don’t even want to go there ever again. I’ve had great success with my biologic, and at the moment my greatest fear is that it will stop working. For me, any one of the risks on the Enbrel list is well worth the quality of life it gives me.
Members like Becstar and Just Me who are open about themselves, and genuinely supportive of others do generally find this a safe and understanding place. We try very hard to keep it that way!
Good luck with this new challenge, KitKat. You know where to come when you need some understanding support!
Thank you for the message Seenie! I'm definitely going to give the meds a fair chance - I figure I owe it to my poor joints :) At this point starting to feel a lot more hopeful that I could potentially be pain free in the future! That sounds pretty great to me right now! MY rhuemy also feels that meds are a good option right now, because I have a history of heart disease in the family and she really doesn't want the constant inflammation to damage my heart. I would have to agree with her on that one! So far so good on the sulfasalazine...I guess all I can do is take this in stride and a day at a time. The biggest mind bender is that this will be part of me for the rest of my life. Still having a hard time with that and have to push that thought aside whenever it comes. But so great that there's a community of support such as this, and there really is a comfort in knowing that I'm not alone!!
Seenie said:
KitKat, you are SO not alone with this! You've just been diagnosed, and you're still reeling from the news. I was diagnosed almost four years ago, and there are days that I'm still reeling too. I shake my head in disbelief that I have this damned thing, and will have it for the rest of my days.
Just Me is right about our "Fear the disease, not the meds" mantra, and she's also right that it isn't that simple. All treatments have risks, but this disease carries a lot of risks as well (and some pretty scary ones at that). But there may come a point when you look at the relative risks of the disease, and the treatment, and you decide that it is worth paying for one set of risks with another. Each of us has to make our own decision on that one. For me, it was a no-brainer: after 20 years of undiagnosed disease, I had suffered a lot of joint destruction and my quality of life was ... no, I don't even want to go there ever again. I've had great success with my biologic, and at the moment my greatest fear is that it will stop working. For me, any one of the risks on the Enbrel list is well worth the quality of life it gives me.
Members like Becstar and Just Me who are open about themselves, and genuinely supportive of others do generally find this a safe and understanding place. We try very hard to keep it that way!
Good luck with this new challenge, KitKat. You know where to come when you need some understanding support!
Let me ditto from a bed in the International Heart Center here in ZOO town about the inflammation and heart issue. My injection ratio was 25 on admission. Its about 40 now after a few days of treatment. We rarely talk about the OTHER issues here but it is a systemic disease that can effect EVERY part of your body. So let me tell my story as to why we tell Everybody to fear the disease, not the meds.....
Not too many years ago, I was sea world with my grandkids having a great time and started feeling pretty punks. By the time we drove home (1200 miles) I didn't know if I was in the car or jail and had crushing chest pain. They rushed me to the cath lab and it turned out to be Heart Failure The pain was from costochondritis (should have been my first clue). They started treating the heart failure and got a fair amount of improvement but not enough to the point they told me 6 mos - year without a transplant. So I flipped them the Bird cashed in my 401K and spent the summer on Cruise Ship a farewell tour of the Mediterranean. Through a series of events too long to go into here I wound up in rheumatology Office I left with BOTH Enbrel and MTX in my hand. Within a few mos the heart failure was GONE. Like others though the damage was done. I have had joint replacements, have more coming etc. Only maybe not My heart recovered but it is still a weak muscle because it was damaged before. That's why here I sit. Big decisions on many fronts. I had to stop my PsA medications to take some chemo I knew the risk. I gambled the heart would stay fine, I may have lost. One more scan to go to get out of here.
There is NO WAITING with this disease. If you do BAD things can happen. What one thinks is a severe problem is often just a bump in the road.
Gentle hugs and best wishes to you tntlamb.
Hugs also, tntlamb, you've been through the worst of it! Best wishes--you've helped me so much (last year with your strong words to convince me to do something about my PsA before it was too late). I'll be forever grateful that you and a few other mods took the time to give me that encouragement, because I'm doing so well on Enbrel. :-)
Kit_Kat and Just Me, take it from one who was terrified to take any meds other than a few OTC pain meds and a couple prednisone tapers. With Enbrel, I have no SEs, my immune system has been just fine, and in my F.U. appt with my dermy yesterday, she said all of my blood work is normal. As far as I know, biologics are really safe, and I'm beyond happy that I started Enbrel last July.
I hope everything works out for you!
Hug to you, tntlamb! Thank you for sharing your story with me!!
And thanks to you as well GrandmaJ! I am definitely going to be giving the meds a go and so far so good on the sulfasalazine (side effects wise). Also very happy today as I reviewed x-rays with my doc and there's no permanent damage to my joints! So now I'm more motivated than ever to give the meds a go, since it seems I may have caught things at a good time.
Thanks everyone!