Newly accepted diagnosis
Hello - I am struggling with finally having to accept that I have RA. Im 56 years old and have recently been told that having ruled out everything else I need to see a Rheumatologist. The problem is I cant get in to see one until mid September. My symptoms came on very suddenly. I woke up one morning in June and my legs were so sore and stiff i could hardly get out of bed. My general doc suggested PT for my knees and legs so I can get up and down stairs and in and out of bed. He wont perscribe and pain killers he wants the RA doc to do to see me first. The worst is the mornings, every muscle in my legs and arms are weak and the joints are stiff and hurt. Getting dressed hurts and I feel like I'm on slow-motion as every move takes longer. I sit all day at a computer and am stiff and sore by the end of the day too. I started taking two extra strength Tylenol and one Aleve an hour before my alarm every morning just to cope with getting ready for work. This is all so shocking to me. I am so worried that my joints are already damaged and that I will end up in a wheelchair before Im 60. I dont like to think about being a burden on my husband when I can no longer use my hands or go to the bathroom. Just really overwhelmed, no genetic history on either side of my family. Other than Hypothyroidism and high blood pressure both controlled by pills I have no preexisting conditions either. How quickly does the damage to joints progress? Should I prepare for a wheelchair soon?
Hi and welcome,
!
First, my apologies for not replying more quickly to your post. Second, if I can offer any advice (and I really try not to), if you can, take a moment and just breathe. Facing the idea of a condition like RA can be scary and overwhelming and doing your own research online can be perilous!
It sounds like you are doing all the right things while you wait for that appointment. And, yes, September seems like a million years away when you are scared and living in pain. Sadly, those initial appointments with a specialist can take awhile to get for new patients. You can ask to be put on a cancellation list at the rheumatologist's office. Then, if the office experiences a cancellation, they will call people on the list and you have a chance of being seen before September. No guarantees, but it's worth a shot.
Now. The truth as best as I can provide it. Yes, RA can be challenging to live with. BUT. You are not destined to end up in a wheelchair or with crippled hands. That can happen, but the symptoms and severity that people experience those symptoms varies widely. And I do mean widely.
Treatment can truly help, both with pain and the damage occuring to one's joints. Finding the right treatment can take some trial and error, but it CAN make a big difference.
Also, once you see the rheumatologist, they may have different views on what pain management options you can try. Almost all doctors are leery of prescribing strong pain medications since the opioid epidemic and unfortunately, people with real pain issues have been caught in the middle.
As you wait for that appointment (and I hope the time passes quickly for you), I wanted to share an article about what to expect at your first appointment and how to get the most out of it -- https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment. Also, I wanted to share one of a series of articles one of our health leaders wrote with tips for the newly diagnosed -- https://rheumatoidarthritis.net/living/no-2-research-dont-panic. All of the articles are worth the read and if your click on the author's name at the top of the article, you can find a link to all of her articles if you want to read more of her work.
Please know you are not alone in this. Nearly every member of this community has been where you are right now. So, even though I bet you feel alone, you are not! Not when you are here.
Hang in there. Do all you can to take care of yourself (physically and mentally) as you wait for that appointment and feel free to post here whenever you need to. And please keep us posted after your appointment, if you feel comfortable doing so. Whether you are diagnosed with RA or another autoimmune condition or something else altogether, we're here for you.
Gentle Hugs, Erin, Team Member.Thank you for your reply I will call today to get on a waiting list. I didnt even think to request that. I hope the RA doctor can find some treatment that will help. I have been slowly letting my friends and family know why I am moving so slow and doing so much less activities. What a relief that I wont have to buy a wheelchair soon. That is encouraging. Thank you again for answering. I will stay in touch.
Hi
. First, I want to echo Erin in saying that is absolutely possible to have a happy, full ambulatory life with RA. Besides each case being different, treatments have advanced quite a lot in recent years in both number and effectiveness (see: https://rheumatoidarthritis.net/treatment).
I also want to note that it is great that you are going to see a rheumatologist. They have years of additional training in the diagnoses and treatment of conditions of the musculoskeletal system and autoimmune conditions. Rheumatology is not a required rotation in medical schools (a pet peeve of mine), so GPs are not as knowledgeable in this subject area. There are multiple conditions besides RA that can potentially carry the symptoms you describe; such as polymyositis, polymyalgia rheumatica, and lupus. I don't mention these different possibilities to frighten you, but to illustrate the importance of seeing the right doctor to get the correct diagnosis. Hopefully Erin's suggestion about the waiting list can get you an earlier appointment. Please feel free to keep us posted and to ask additional questions - there are people here with experience and willing to help. Best, Richard (Team Member)Thank you for the reply. I appreciate your encouragement and words of wisdom. I will try not to panic until I see the RA doctor and get a better diagnosis. Thank you again.
