Finally people who understand what I am going through from meds to emotional wreck thank you all. I have been an RN for 21 years I worked in a nicu a year after my diagnosis pas had caused the AP tendon in my right foot to be shredded I have since had 3 foot surgeries and now need an ankle replacement I had no choice but to quiet work since then my PsA has spread to my right knee( had 1 surgery already) both hands, elbows,shoulders and lower back. I filed for disability a year and a half ago been denied twice awaiting a hearing now. Like I have read here from so many of you my family doesn’t understand my limitations because it is not something they can see other than my scars and swollen joints. They don’t understand the fatigue that comes with this disease and the constant pain when my doc finally talked me in to taking pain meds everyone said " don’t take them you will become addicted " well he’ll that’s why I waited 3 years to take anything stronger than ibuprofen. Now that the pain has gotten so bad due to multiple joint damage my husband still has to talk me into taking anything strong. I am on muscle relaxers 3 times a day due to sever headaches caused from c-spine affected so the fatigue is constant. Sorry so long of a rant I just know you all will understand.
We're pleased you're here too, Red. Do check out our post Symptom Control vs Disease Control ... we are pretty evangelical about making sure people - even RN's ;-) - understand which meds do what. Are you on Remicade at the moment? Hope that we can help support you through to a better place.
Welcome! Sounds like you have had some tough times already and glad you found us too. You may find just being here along with expressing yourself can really help. Look forward to getting to know you more.
Are you on a biologic yet? Pain meds get some of us through tough times but they do not prevent further damage from this disease. That is something we push hard get symptoms controlled but prevent damage too. Unfortunately there is no way to undo what is already done but some of the meds can prevent more from occurring. Good luck!
Yes I just started remicade 2 weeks ago had been on cimzea for 2 1/2 years took 3 months for my insurance to approve new med hoping this slows it down and thanks for the reply
Jules G said:
We’re pleased you’re here too, Red. Do check out our post Symptom Control vs Disease Control … we are pretty evangelical about making sure people - even RN’s - understand which meds do what. Are you on Remicade at the moment? Hope that we can help support you through to a better place.
Good for you. Hope remicade works well for you so you can get to a better place. This disease sure tests our strength, relationships and incomes but somehow it makes us deeper and more appreciative of the little things in life. Dealing with pain and quality of life issues is hard enough but when no one else seems to “get” it and compassion wains makes it worse. You are very right that you have found a place and people who either have dealt with these same problems or are dealing with them right along with you.
You know, I sort of get it when people don't understand my limitations but you've had 4 surgeries with another in the offing, you'd think that would get some sort of message out there. Though you do specify that it is the fatigue and pain that baffles them and yes, I suppose those things are very hard for anyone else to understand. Does sound like your husband is supportive though.
I hope remicade makes a big difference. I imagine that if you can get relief / improvement in one or two areas you'll feel a whole lot better. Good luck with your disability hearing too.
Welcome to this group of wonderful people who have kept me from going potty more than once. I also hope the Remicade works. Good luck with your disability hearing--are you at the ALJ stage? I am also very happy your husband is supportive--mine has also made me take stronger meds more than once. He is a big part of the reason why I'm doing as well as I am.
Sybil, you have a point--I see a bit of light dawn in people's eyes when I say left shoulder replaced, right shoulder and hip must be replaced, cspine issues surgery recommended. I don't recommend this one, but SOME folk in my office were educated really quickly after they heard me quite unintentionally yelp because I moved and some joint didn't like it when we've been in meetings.