Have had a couple of months of a flare - pain, not sleeping, stiff, unable to walk more than a few yards - been in contact lots since Christmas with the rheumatology support team.
Finally some i.m. steroids have given me a few days of relief, allowing me to regain a little sanity.
Rheumatologist has a wonderful inclusive way and into shared decision making, but on Friday that was all too much for me still - and just asked that he use his extensive experience to make some key medication decisions for me.Struggling with the burden of the impact of the disease, not able to cope with anything else.
Sorry to hear that you're having a rough time. What you said makes so much sense! Sometimes it's just too much and we need someone else to make decisions for you. It's perfectly okay to do that.
I'm glad that you've gotten a bit of relief, and I hope that you can continue to have relief.
Sorry to hear this. I wanted to check your profile and see your history but being it's private I wasn't able to do that. This is a hard time and it seems hopeless when you feel this awful, but there are many options and now you can trust your rheumy to make a good decision about your treatment. My PsA progressed slowly for a few years, then gradually picked up momentum from 2012 to 2014 until I got desperate. It's when your body is begging for some type of relief that you'll try anything and everything to rid yourself of the nastiness of it all. Now being on Enbrel nearly 7 months I don't have any PsA pain or fatigue, and I look at my ankles, feet and hands in amazement how thin they look. But while I had PsA symptoms, even though the rheumy told me they were swollen, I really couldn't see it because it had come on gradually. I only felt the pain inside, and it got to be more than I could handle. And psoriasis, too, was going crazy.
I hope that you will be able to tell us your success story in the not-too-distant future! I know it doesn't seem like that will ever happen--but there are millions of people, and some of them on this website who can tell you it IS possible.
I want to mention that before I started Enbrel I took fish oil and CoQ10. I would notice a slight increase in my symptoms if I missed the CoQ10 for a few days. I still take it. Also, I think a trigger for some symptoms for me (neuropathy) was sweets--especially ice cream. Ice packs would temporarily relieve the neuropathy in my feet--enough so I could sleep at night. My doctor had finally put me on Nortriptyline for that a couple years ago, which did ultimately "cure" - I should say almost cure the neuropathy. After I was on Enbrel for a few months, the neuropathy and pain in the tops of my feet have completely vanished. I'm telling you this so you know there can be better days ahead.
I hope some other folks come on board and share their success stories with you! :-)
I can’t help but think that the damp, cold, dark Scottish winter weather isn’t helping you feel better. I also think it was smart of you to hand yourself over to your doc and say “Just do something with me”. That sends a strong message about how terrible you’re feeling. What did he come up with? I hope that whatever it is, it’s doing you some good.
Let us know how you’re doing.
I take some glucosamine and cod liver oil tablets sometimes - when I can stand another pill! I've suggested to my husband that we sit down and book a holiday for later in Spring and try and get some sunrays. We sometimes go flotilla yacht sailing - then I have the cabin with me and can just lie down when i need to but can see new places every day and do as much or as little as I want- just perfect really.
Hubby was just so relieved when the steroids helped me a bit, that I realised what a huge impact the past couple of months has had on him as well. This illness certainly takes its toll on people, directly and indirectly.