Terrible pain
Hello everyone, thanks for adding me to this group.
I’ve been diagnosed with AR in 2020, and I am living the worst moment of my life with this condition.
I’m currently with Hydroxychloroquine twice a day, plus naproxen and ibuprofen during the day.
The last month and a half I’ve experience lots of inflammation in hands, feet an now right arm, and I’m suffering lots of pain…mainly at night when I can’t sleep at all because of the pain.
Yesterday I saw the podiatric, because my left foot is very swollen and I’m limping walking very bad, and he prescribed me an orthopaedic boot to use all the time while I am standing and walking.
I feel very depressed and frustrated, I am 43, with a daughter I can’t do simple things, and something that really makes me sad is to ask for assistance.
A month ago I got a corticosteroids injection which helped me a lot! But the effect only lasted 3 weeks and now I’m back to this awful pain. That time my dr said he would like to try introducing metatroxen, and I had my chest X-ray done this week.
I tried to get a sooner appointment with my rheumatologist but I was told my dr is retireing and he is not attending patients anymore! …so after I spoke the receptionist (an angel) she was very empathetic with me she managed to find me an appt next Monday with a new rheumatologist, finders crossed he is the right one and he listens to me and find me the right treatment.
Now I don’t know what to do while I’m waiting to see the doctor as I’m really struggling, I know is only a few more days but every day is a like a year to me…
I forgot to mentioned I was prescribed to prednisone at the beginning and I remember this helped me, I still have some boxes left, so I was wondering if I can take prednisone these days while I am in pain waiting to see the doctor next week.
Sorry the long message, but I don’t know anybody else with this condition and I really need to get some advice, support or even a little word from you and your experiences.
Have a nice day everyone,
Barbara
I know exactly how you feel. I have been living with RA for over three decades now and there are days when it feels like the whole world is coming down around me and the best I can do is grab a few things before they hit the ground. Here are some of the facts - finding a treatment for RA takes a while. There is no test to determine which part of your immune system is causing your particular illness, so it’s mainly trial and error. It took me many years to find the right biologic that worked but I did eventually find it and that’s the good news - most of us eventually find a routine and medicine that works for us. At least for a while, anyway. It’s enough, though, to give us relief to pull together some sort of semblance of a life. I know it’s not the best news, objectively, but it is positive. I promise. If you add into to your troubles the part about finding and seeing a new rheumatologist I can understand how it is overwhelming. No one likes the hassle of going to a new doctor, but it is our lives, unfortunately. Just know that we are here to help however we can and most importantly - you are not alone! Please reach out if you need. Keep on keepin’ on, DPM
Thanks Daniel for your support.
I’m trying to think positive about the fact of seing a new doctor, maybe he is the right one.
For now we just need to continue living the best way than we can.
Warm wishes
I'm crossing my fingers that your appointment with the new rheumatologist tomorrow goes well! If you're comfortable, please let us know what happens and how you end up feeling about it. Please know our community is here for you and reach out any time. Sending you a gentle hug. -- Warmly, Christine (Team Member)
Thanks for your thoughts.
Today I didn’t go to work.
I feel super tired and lots of pain in hands, I can’t do anything…
I will let you know how the doctors appointment goes.
Bx
Hi
. I think looking at the new doctor as an opportunity to reshape your care is a good perspective. I want to share with you this article from our patient leader Kelly (full disclosure - I'm her husband) on questions for the doctor: https://rheumatoidarthritis.net/living/questions-for-the-doctor. In particular, it may be helpful in establishing goals and to see if you and the doctor are on the same page. In addition, this article offers thoughts on how to know when to change medications: https://rheumatoidarthritis.net/living/when-to-change-medications. You and the new doctor can work on what treatment might be best to try to meet goals for your treatment. As Daniel noted, it may not be easy, but it is possible. If you don't mind my asking, when is your appointment? Wishing you the best. Richard (RheumatoidArthritis.net Team)
Thanks Richard and thanks everyone for taking time to respond me with your kind words and wishes.
I saw the new doc yesterday, and I had a 40 minutes appointment which is quite unusual…in summery he checked me in several parts of my body and he said he didn’t need any exam to confirm it is RA 100% and the condition got worse over last month. me and my husband got very emotional about the stressful times, my current condition, but grateful that we finally got somebody to listen and able to help us…
Now I’m on medical leave for this week until the new medicines takes effect.
So now on with hydroxychloroquine as usual, but I have to introduce prednisolone (temporary), omeprazol, acid folic and methotrexate…quite overwhelming! I had to make a calendar with days, dates and medicines to take.
Today I am a bit relieved and hopeless that this is the right thing to do and I will be fine soon…
I am taking things easier, trying to eat healthier (but I’m loosing appetite recently), having warm bath and doing some hand’s exercises very gently and I’m still using the orthotic boot.
I’m a bit worried about the methotrexate, as he said I could get dizzy, sick, and I have to take it on Friday night to allow the weekend to recover…but if it’s what I need to do to get better I will do it.
Have a nice day everyone, I’m keeping reading all you post and positive vibes.
Bx
Hi there! It looks like the second half of your comment has text rendering incorrectly. You can try to resubmit the comment or just resubmit the top part but I wanted to let you know in case you didn't see! Warmly, - Reggie, RheumatoidArthritis.net team member Oh
, I am so glad that the doctor took time with you and you were able to get answers! That being said, even with the relief of having a doctor listen and support you, those emotions you're feeling are to be expected. It can be overwhelming, especially navigating a new treatment regime, and then wondering and worrying what potential side effects you might have... I wanted to share our article about the emotional toll of RA, https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems as well as this article from our advocate Amanda about how her emotions were impacted when diagnosed with RA, https://rheumatoidarthritis.net/living/grief-emotions-chronic-illness. So many people in the community here have been right where you are, and I hope that knowing that can help you feel understood and supported.
Also, I want to say that I am so happy to hear that you're able to take some time of work and are taking things easy while you adjust. It may take some time, but you will adjust and in the meantime our community is here for you! Please don't hesitate to reach out here any time, whether you have questions, need to vent, or could use some support!
Sending you gentle hugs. -- Warmly, Christine (Team Member)
