I feel like a drug addict
I was diagnosed about 10 years ago. I went to the doctor because all of a sudden I couldn't get off the couch and walk. With pills and treatment it was completely manageable. I moved back home to Pennsylvania in 2009 and stupidly thought I am fine. I don't think I have RA, I am going to the gym everyday, walking over 4 miles on the treadmill, life is great. Then things changed. I haven't sat on a couch to watch a movie in over 4 years. My leg pain is thru the roof, car trips??? are you crazy? Then I started dropping everything and my hands wouldn't work. The muscle spasms in my back (which I have had all my life) have gotten severe. When they hit I can't even get out of bed. My life has definitely changed in 5 short years. I was telling my RA doc about all the leg pain and no one can find a cause, that sitting is getting very hard. He ordered x-rays of my back and pelvis. In between the x-rays and my next RA appointment I got hit with another spasm. (Lost a week of work and no more sick time...ugh). We have found severe arthritis and damage in my SI (Sacroiliac) joint. It connects the spine to the tailbone. And the culprit to my excruciating leg pain. I am having problems wearing shoes because my left toes are killing me, left thumb hasn't bent in 4 months, it is completely locked and the right one is right behind it. For the past 18 months I have found myself constantly calling my doc and asking for pain pill refills. I feel like a drug addict. So far no meds are working. I have gone thru methotrexate (my liver didn't like it) another pill my liver did not like, 6 months of Enbrel with no results. Now I am trying weekly shots of Actemra, daily pills of Plaquanill (sorry don't know how to spell it) and he just gave me a new script for Celebrex. I do not sleep well (Heck, I can't even get out of a chair without moaning in pain). I don't take pain pills during the day at work or anything like that. But weekends and nights, I have come to depend on them. I take a ton of aspirin and ibuprofen that do not work all week long. My doctor only prescribes 30 pills so I am constantly calling in for a refill. Is this normal? Am I wrong in looking forward to the relief they bring? I don't know, I feel like I have to go without them for a week or two to justify asking for more. Anyone else out there feel the same?
Okay, well that totally fucking sucks. I feel terrible for you. I had a ghastly run of it for awhile there (not NEARLY as bad as you, you're a monster for handling it all. I bow!) and I called my RA doc because I'm a terrible whiner and just think I should gut up and take it. But I was going nuts. It was NOT supposed to be this bad. So finally I called and while it seems as if there's always been a Prednisone DANGER DANGER robot following that drug around, he prescribed me what I guess you could say, a Power Round where I took a megadose of the stuff for 7 or 10 days, i can't remember. Now, granted, my demons aren't the same as yours. My hands are awful of course, elbows are real pricks about it, and everything sucks but it's the ankles that get me the worst. They seize up or feel like something twists and they just flat say "Nope, you're either goin' down or stopping but this walking thing you're into right now? Not gonna happen." But I'll tell you what, after I had that megadose, even my ankles quit being such dickheads. I mean it. It's been about a month now and while not pain free, there's a good couple hours of the day where I'll look up and realize, Hey, agony hasn't been here in about 20 minutes. It might not be for you but it gave me a 180. Now if I could just get this lingering depression to get the hell outta here, I'd be singing in the rain. Hang in there, honey. It sucks. But you're not alone feelin' it. RA is a bitch.
Hi Lisa ~
I am so sorry to hear how much you are struggling right now - it sounds like you are going through a lot! Unfortunately, it can sometimes take a frustratingly long amount of time to find the right treatment to get RA under control, but it sounds like you and your doctor are on the right path. I have been in your shoes and I understand feeling "like a drug addict" but I think that it can be normal for people living with chronic pain. Here's a couple of articles where others feel the same! Unfortunately laws put in place to stop drug seekers often have a negative impact on those of us living with chronic illness.
https://rheumatoidarthritis.net/living/not-a-junkie/
https://rheumatoidarthritis.net/living/must-better-way/My best advice is to encourage you to keep reporting your symptoms to your doctor and pressing for answers. If you are taking a lot of over the counter NSAIDs (non-sterodial anti inflammatories like advil) you may want to see if your doctor would consider giving you a prescription-strength NSAID. And, if you feel like it would help, it might be worth getting a second opinion from a new rheumatologist.
Best of luck to you!
~Mariah~ (Site Moderator)
