Rheumatoid Arthritis and Shoulder Pain!
Hello everyone,
I am new to this group and was diagnosed with Rheumatoid Arthritis about a year ago. I have been noticing severe pain in my shoulder area. It feels more like someone is sticking a burning hot fire stick to my shoulder. At first, when I started noticing the pain, I thought my bra strap needed adjusting. Then, when I did the adjustment or in removing the bra completely the pain never went away, but was persistent. It wasn't until I did my research that I realized that I could experience discomfort in my shoulders as well my joints. Also, my vision is not as clear as it used to be and I was only recently told by my doctor that my medication (Plaquenil) can cause vision problems. Imagine my surprise after taking this medication since my diagnosis, that I was only recently told I should be getting eye exams.
I have also began to notice that I stay extremely tired, regardless to how early I go to bed. I still work (from home), and have always done a lot of typing, but for some reason my fingers also don't seem to work as well as they used to.
My oldest sister suffered with RA, but did not discuss her condition very much with me, so all of this is very new. Any information that can be shared will be much appreciated, as this is a whole new ball game for me.
I also have Hashimotos disease, heart valve disease, and pulmonary hypertension, and look forward to any information available and suggestions I should discuss with my healthcare provider on my next visit.
, hello and welcome! While I wish there was no need for a community like this, I am glad you found us!
I hope you are able to have a good discussion with your physician very soon. If you feel like Plaquenil is not a good fit for you, talk to your doctor about that. It can take some trial and error to find the right treatment for you. Like many of our community members, you deal with other health conditions and I know that can make managing your RA even more of a challenge.
A lot of the symptoms you shared could be related to your RA or your other health conditions, so it's definitely important to make sure your doctor's are listening to you and checking for possible medication side effects (and informing you of those!) or contraindications.
I wanted to share this article about getting the most out of your doctor's appointment. The author (Kelly) shares some great tips for making the most of that limited time you have with your physician -- https://rheumatoidarthritis.net/living/preparing-rheumatology-appointment. It's going to make more work for you, but making sure all of your specialists have the latest information about all your conditions and treatments will be helpful for you and them.
Also, while you are a year into your diagnosis, I wanted to share one of my favorite pieces about being newly diagnosed -- https://rheumatoidarthritis.net/living/back-to-the-future.
Thank you for sharing and for being a part of this community. Please don't hesitate to reach out if you have more questions!
Best, Erin, RheumatoidArthritis.net Team Member.Hi Erin, thank you for your response. I will review both documents you sent and will definitely make notes to discuss with my provider on my upcoming appointment.
Thank you again!Hi Drea, thank you for your response and the wealth of information. I actually have a doctor's appointment in February. However, my sister is now deceased, she passed away in May of 2020. She was very private and didn't talk much about her condition. When our family found out about her condition, she was practically crippled and in a nursing home. She lived in another state. She was not a sharer, or a complainer, but not much of one that would willingly provide a family history if she did not have to. So, when I was first diagnosed with RA, my doctor asked me about the medication my sister was on, and when was she diagnosed, I was unable to provide any responses that would help my situation. I actually look forward to my doctor's appointment. Thanks again for your response 
I am so sorry about your sister. But you bring up a good point about siblings having the same disease and the medications they use. It IS very useful to know what worked for one....because likely it will work for the other.
I will share this info with you. I have a half brother some 15 years younger. When he was 5 I finished college and moved across the country to CA. So other than trips to visit the family, we didn't see each other on a regular basis. One year, during a trip back to New England in the winter months, I caught whatever bad cold was going around. Came back to CA with a bad case of bronchitis. A few months later I had my very first RA flare.....and would ultimately be diagnosed with RA. Turns out my half brother also caught the same cold a week after me and a few months later HE had a problem with flaring joints and would ultimately be diagnosed with RA. He went on plaquenil and steroids. I went on MTX. He failed his drug regimen and would ultimately go on Enbrel [biologic]. I stayed on MTX which never gave me full relief. It would be years until I went on Humira [biologic]. Back then we weren't paying too much attention to sibling drug success. Too bad....if we did, then I would have started on a biologic like Enbrel or Humira sooner.
So knowing this info when a sibling has the same disease is always an excellent thing. I'm so sorry you didn't have that opportunity.
That said, may I make a suggestion? You might want to contact the facility your sister was at and explain that you have the same condition and need to find out what drugs your sister was using for that condition. This will save you a lot of time in finding the right cocktail that works for you [by eliminating the drugs she was on]. I'm not sure if HIPPA protects info after a person is deceased [probably does] but you just might be able to get it. If anything, it will tell you what drugs probably WON'T work for you. Good luck.
Hello! Thank you for sharing your experience! Regarding shoulders, as someone else mentioned it might not be RA related, but it could be. My mom has RA and some of her first flare ups involved her shoulders. I only recently had my first shoulder flare up and it was tough. It started out not really painful enough to stop doing anything, so I pushed through it. Turns out - I should have rested it (constant struggle of rest vs activity vs pushing through!). Finally I woke up on the day after Christmas (after several nights not sleeping well due to the pain) and it was at its all time high. Small movements were OK but range of motion was extremely limited. I was exhausted from the pain. Normally fatigue really hits me when I am flaring up and it feels like I could quite literally just fall asleep standing up. Other times the fatigue just hits me out of nowhere when I have otherwise been doing just fine. Everyones body is different, but RA fatigue is definitely a symptom I think we may all experience. I took plaquenil for a short period of time but am lucky I didn't experience any side effects from it (it also didn't work for my RA either though... maybe they just gave me a sugar pill come to think of it.... lol). Each medication comes with its own list of side effects but if your vision is bothering you, you'll definitely want to bring it up to your Rheumatologist and maybe they can find an alternative medication for you to take. Definitely worth asking about!
I am sorry to hear you have other conditions to deal with on top of RA. Glad you found this site though, it has really been a safe haven for me and hopefully it will be for you too.
Welcome! You have received some great insight already, but I just want to share a note that if you have any questions - this is a safe space to ask and there are so many people who have experience managing RA, you're in good hands! - Reggie, RheumatoidArthritis.net team member
