Hello! I am back!

Hi everyone,

I hope you are doing well! I apologize for not posting much or replying much. I was pretty depressed the past few months. I got fired from my job after I was hospitalized for a week. Methotrexate and I did not get along very well. I am feeling much more hopefully than when i was first diagnosed. My pain is daily still, I just started on Humira tomorrow will complete my second month on this medication and so far so good. I've had minor side effects but nothing major.

How do you all help the people in your lives understand the pain?

Today i was making soup and i tried to lift the bowl and my left elbow just stopped working. It locked up and i couldn't move it. I finally got it to crack into place but this happens a lot to me with a bunch of my joints and i tell my family members " help my elbow stopped working!" and they look at me like im crazy haha. Whenever i feel too sick or tired or just sore to do something for my sister or with my sister, she always says "You're always sick or you're always tired or you're always in pain" I guess i just don't know what else to say besides those three if that's what i'm experiencing but to her its like a broken record so it doesn't concern her at all and this slightly bothers me because then shell be angry with me for not doing whatever it was that she wanted.

I was also wondering about how you guys feel at night because this is the worst time for me. My body screams with pain and i can barely even roll from side to side in bed. Do any of you experience this worsening pain at night? I hope everyone is doing okay and as always thank you all for your input and advice! I'm trying to learn as much as i can so i can live my life full and happy! Thank you for helping me on this journey and i hope i can help some of you eventually!!

Hi Stephany! I’m sorry that you’ve been having such a hard time. You asked about how to get people around you to understand the pain. There are lots of answers, including you may not be able to. More importantly, as your treatment starts to really work, you will have less pain and fatigue, and what you have will likely be easier to manage. You’re still in the early stages of diagnosis and treatment, and I know that you said that methotrexate was a scary failure for you. It takes time, which is really hard.

Hi stephany

I’ve only had psa for just over a year so I’m not really very experienced but I confirm - others can’t really understand the pain! I’m sure though that you will find a drug that helps and things will improve! When first diagnosed I used to cry in the shower every morning as I was in so much pain. My family still expected me to carry on as normal - they do care but they just can’t relate to that feeling where you want to chop a limb off! Hang in there …

Hi, Stephany. It is great to hear from you, but I'm sorry that this disease is giving you the gears right now. We get it, but you already knew that. Too bad our understanding doesn't make your joints feel better.

Over the past year or so, I went downhill and in the fall my rheumatologist decided that Enbrel had pooped out on me after two years. I switched to Humira, but there was a bit of a delay in starting it. On Sunday past, I took my fifth shot (so I've been on it two months now, about the same amount of time that you have been, I think.) I have felt no different, and up until last week I would have told you that I thought Humira was quite possibly going to be a bust. But then I had a very busy weekend, and at the end of the weekend I was tired from having done a lot, but not nearly as tired as I've been from doing far less (or nothing at all) in the past year. I'm generally feeling well now, and oddly, my blood pressure -- which my doc had been concerned about -- took a nosedive. I do believe that Humira has really started to get some traction. So be a patient patient! The positive effects of the biologic usually creep up on you and then one day you realize that it's starting to help. For the price they cost, you'd expect a miraculous healing within minutes of injecting ... I wish!

As for making family and friends understand your pain, this has been a topic of discussion here since the community was formed. Nobody seems to have the answer, but Moderator Jules (yoo hoo Jules, are you there?) once wrote a great open letter that a lot of us could relate to only too well.

As for the elbow that seizes up ... yup, that can happen. But with any luck, and a bit of time, Humira will help on that count as well.

It's so nice that you came back to say hello!

Hi Stephany. I just wanted to tell you that for me the nights are the worst. Not that mine are real bad, but my back and sides stiffen up and become painful during the night, too. I'm hoping it's not a sign that Enbrel is starting to peter out for me. But, I don't think it's uncommon for PsA to cause pain from being immobile. I seem to feel my very best when I'm in motion. Only bad thing, when you stop moving the pain can set in real quickly!

Stephany forgot to say mine is bad at night but I bought a mattress topper and a heating pad - heating pad was very cheap (about 25 dollars) which really help me at night! I put it on any bits that are hurting - hips, shoulders and usually manage to get some sleep. They have an automatic cut off too.

Hello Stephany!

That's a lot of pain to cope with. Yesterday I drove my husband to hospital for a routine investigation which he was not looking forward to. As we approached the hospital my arm starting hurting like hell if I bent it just a little. So we sat in the car park while I complained bitterly and he suggested that maybe I needed to go to casualty and he could forget about his appointment. I think he just wanted an excuse! My pains don't last though. But nobody else would have given a damn, I'm pretty sure of that.

Something I try now and then is to proclaim loudly when I feel particularly good. The hope is that people will draw their own conclusions about what it's like the rest of the time rather than me having to tell them. So, for example, you might pick your moment to exclaim "wow, my elbow's working so well today!" But these days I don't need these strategies thanks to Humira, mainly. I really hope you get the same great result, that would be brilliant. So glad to hear that you are feeling more hopeful and I think you really have reason to on your new treatment