First Blog so bear with me! Hello to all my frustrated new friends. Let me introduce myself I am Lauren, I am 29 years old. I am mother, wife, photographer and a fighter of this crazy disease called PsA. I wake up most days in pain this radiating pain that goes from the top of me head to the tips of toes. I believe that I have become numb to the pain at times. I lay in bed and toss and turn when I sleep with having a 21 month old I don't get much sleep anyways. I like to act like I am ok to keep up with my son and my younger husband of 26. PsA is one of my many issues but I also got diagnosed with a blood clotting disease that leaves me for high risk of embolisms in my brain, heart and lung. Man do I need a vacation. I would love to know what people do for pain management and how you go about your day to day. Is there a special diet your on that make this all better any answers that anyone has would be great. Today I reached a low which I don't like to do. I believe staying positive helps but it only helps. Being a young mother there are many worries that I have. Everyday I feel something new is going on with my body, my flare ups are everyday. My specialist said that I could go into a remission state for awhile. Well I have been going through this for over 2 years and no relief yet. Thanks to xanax for keeping me calm and my mind a bit sane. God knows things could be worse and I keep that with me.
Hi Lauren! You may want to start off with the section for newbies. You'll find a lot of great information there, as well as my story.
In terms of how I manage day to day? The big thing is taking control of your disease. There are meds that can really slow the progression of the disease as well as minimize damage. You'll need to work with your doctors to ensure that specific meds are safe for you, since you have other medical concerns as well, but you will find something that works, and it will feel like a new you.
I'm not sure how I dragged my way through my first year after diagnosis. I was living in a fog, and hurting. Life isn't perfect now, but it's a lot better than it was. I also just have more perspective now. A good diet as well as movement will help out too, but there is no magic bullet. Sorry.
Hi Lauren, welcome and glad for you that you found this place, because you'll get lots of help here. I can't say much helped me as far as PsA symptoms before I started Enbrel--except certain things I did would help for a few minutes. For instance, letting cold water blast my tense shoulders and tired body for a few seconds during my morning shower. Or, ice packs on my feet for neuropathy. Or, just fighting the stiffness by movement rather than sitting or lying down. In fact, for me, being immobile caused so much pain and stiffness, going to bed at night was a double-edged sword, being so exhausted I just wanted to collapse, but knowing getting up in the morning I'd feel like (insert bad word) barely being able to walk at first.
After I started Enbrel I felt like a fairly healthy 30-year old for two months--on the doctor's form I changed my health status from poor to good. But damage from years of PsA started showing up and that's what I have to deals with now. I still think Enbrel is working though because my psoriasis is in check and I don't have the fatigue or stiffness anywhere near what it had been. So I guess my advice would be if your doctor wants to put you on a biologic, go for it. I hope you have better days real soon! Oh, and P.S., MG217 medicated tar shampoo worked great for my scalp psoriasis, but nothing seemed to do any more than curb the itch of my other psoriasis.
Thank you Ladies :) just a question have either one of you had swollen lymph nodes due to PsA?