Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I'm 20 years old and was diagnosed with RA last month. I've been in pain for years, but my doctor didn't take me seriously until I made the decision to find a new doctor. My new doctor discovered my RA and hypothyroidism. My lower vertebrae and hips are the most effected by my RA.
My pain had been manageable, but uncomfortable and work (as a pharm tech) was a daily struggle. I was prescribed sulindac to help with the pain. I didn't feel any difference, so we tried Mobic.
Several weeks ago, I had a flare up at work so severe that I could not move. I barely made it to my car and it was even harder to get in it. I was off work and barely alive for two and a half weeks, during which I experienced another flare up almost as bad. I was given a shot for pain in my back when I initially went to the ER; then for two weeks Norco, Robaxin, and Indocin. My doctor explained that my arthritis had caused debilitating muscle spasms. The Norco caused severe stomach upset and drowsiness and I dont feel like the NSAID or muscle relaxer does much for me...
I went back to work this week and I'm terrified. I'm excelling in my career and its becoming more demanding. I fear the pain and losing everything I've worked for. I dont feel like my medicine helps me and my Dr hasn't even mentioned sending me to a specialist. I've watched my father decline due to his RA and I dont feel like I have much of a future. I'm sad and I feel alone. I'm afraid my partner won't want to deal with someone who's so problematic. I'm worried about the future and unsure of what to do next. I dont know if I will be capable of working in the future or if its even worth it to continue my education.
Any wisdom, comments, or support would be much appreciated.
Sorry you're going through this.
Is your new doctor a board certified rheumatologist? If not, this is what you need.
Have you been advised to start DMARD drugs? Imperative to being down inflammation and pain and stop destruction.
RA seems to require more activism from patients than other illnesses, I'm not sure why. Maybe because it presents so differently in each of us. It sounds like your new doctor is a better fit for you than your old one, for sure - it sucks to not be taken seriously when you have pain. But you will benefit from seeing a rheumatologist as soon as you can, if that's not your new doctor's specialty. What I've found is that the combination of a rheumatologist and a good family doctor has been really helpful. The rheumatologist has tunnel vision and focuses entirely on one thing, and the family doctor is my gatekeeper, and he looks at the whole picture.
Keep up your education and don't give up on that career. Once you get the right combination of meds, you will see a significant turnaround. This isn't your father's RA. Things have changed remarkably in the last twenty years in this field.
Most insurance companies seem to require that you work through a certain pattern of drugs before you can try the DMARDs that Lynn suggested. You generally can't just jump right into those, according to most people's experience here. Ask your doctor what the long term plan is, and ask how quickly you'll be able to move through the steps.
As for your partner, well, I'm speaking from a long-married grandmother's perspective here. Life is beautiful and complicated and messy and full of unknowns. You and your partner will both be dealt a number of cards over the years you're together, and there's no way to foresee what those will be. You have no control over the things that happen, but you do have control over your own reactions to them, and you have control over the communication you offer your partner.
You used the term 'problematic', so let's think about this for a second: there are plenty of relationships between two perfectly healthy, outwardly beautiful, financially stable people that fall apart, right? And there are many relationships between people with challenges that are rock solid. So, the problematic part isn't necessarily the disability, the diagnosis, or the bank account. It must be something else.
It's true that your partner might be unable to deal with this, but if so, that's not a partner who's in for the long haul anyway, because if it isn't this, it will be something else. And yes, you could blow it too, by turning bitter and uncommunicative. So, you control / influence what you can change, and keep your your eyes open, and see how things play out. The truth is that a test of some kind early in a relationship can often forge a powerful connection between two people that might have otherwise taken years to grow, or never happened at all. So don't lose hope, dear.
I've had RA since I was about 15 (for over 48 years now). I remember in those days, they would just shake their heads and tell you to take aspirin. Now there are literally hundreds of drugs for RA, and you may have to try half of them before you find what works for you. If your insurance will allow it, try to go ahead and just schedule an appointment with a Rheumatologist. Sometimes new patients have to wait months, so it's best to try to get on the calendar. If your insurance won't let you do that, keep pressing your general practice doc to recommend one asap. Tell him/her that this is severely affecting your ability to function normally in life and that you don't want to end up disabled. Just be cautious about taking new drugs. I had a very severe reaction to Indocin - extreme headache and vomiting, and Methotrexate (they try this on everyone before moving to biological drugs) cause kidney failure in me - I had to go to a kidney doc for over two years just after a couple of weeks of being on methotrexate. Just watch for any weird side-effects. For me, my pee got really foamy all of a sudden, which raised red flags for my doc.
As for your partner, and I know you are young and may have to learn this the hard way, if your struggles with RA cause any problems, this person is not good enough for you. Before my husband passed away, he would even tie my shoes for me without me ever asking, because he could just see the difficulty I was having. That is the kind of partner you need.
Keep us updated on your progress, and as katie indicated, you really need to be your own best advocate throughout this whole thing. If one medicine isn't helping, demand another, and if one doctor is moving too slowly, find another. It may take a while before you get to the best solution for your particular case. No two cases of RA are the same. You can just read through the posts here to see that.
Best of luck to you.
This disease is serious, and pain control comes when the disease is under control I cannot urge you strongly enough to put your foot down, or get a new rheumatologist if this one continues to treat you in this unprofessional manner.
I was married 17 years when I got RA. My husband is still with me! Trust me, if your partner isn't there for you, you don't want them long term. Everything is problematic when you get old, even if you don't have RA.
I think it used to be included under, "in sickness and in health" in marriage vows. Fortunately, not written by millennials, but people who know that we live in imperfect bodies on this earth.