Hanging in There

By barbs53

1 min read

I was diagnosed with RA. It's been a struggle with pain and no one understands how much I hurt. Sometimes I don't want to get out of bed.

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Daniel Malito Moderator & Contributor
<inline-mention user-id="3142107" username="barbs53"/> Trust me when I say, I understand and you are not alone. After 30+ years with RA myself there isn't much I haven't seen and even less I haven't heard of. Not wanting to get out of bed is pretty much par for the course - even with my cheapo, totally lumpy, uncomfortable mattress, some days it's like a black hole that sucks me back down for hours at a time!! We do what we can, and that's good enough! We are here if you need. Keep on keepin' on, DPM
Franki King Moderator & Contributor
We understand here! I have so so many days where I don't want to get out of bed or I just really want to get back into bed. It's a constant stream of good days and bad days. I'm so sorry you're struggling. I wish you many many good days ahead. -Franki, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team
Richard Faust Community Admin
Hi barbs53. As you can see, people here do understand. Are you new to RA and are you seeing a rheumatologist? I do want to say that there are now more treatment options available than every before. My wife, Kelly Mack (a contributor here) was diagnosed at two and has had juvenile RA for over 40 years. She has seen a lot over the years and wrote this article on the evolution of RA treatments: <a href='https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments' target='_blank'>https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/</a>. She notes "What is powerful to me, about recounting this progression of treatments, is understanding how far we have come in developments and options. Sure, no treatment is perfect nor one size fits all. But we have a few tools to fight RA." Know that this community is here for you with information and support. Hoping you get some relief soon. Best, Richard (RheumatoidArthritis.net Team)
Tamara Haag Moderator & Contributor
Hi <inline-mention user-id="3142107" username="barbs53"/> , To add to what the others have said, while no one in your "real life" may understand how much you hurt, I really do. It's incredible how powerful the pain of RA, a condition that is often invisible on the outside, can be. I have had times when I've had to be on sick leave due to debilitating pain. I feel for you, truly. I agree with Richard about continuing to try to find the most effective treatment plan. Over my 20 years with RA, my treatment plan has changed a lot as new medications have become available and/or as new symptoms have appeared or worsened. The trial-and-error of finding effective treatment can be frustrating and agonizing, but sometimes it can be well worth it. We do get it here, so please continue to reach out any time you want to share or just to vent. This is a really hard disease, and contending with is can feel really lonely. Our hope is that sharing with one another will help us all feel less alone. Gentle hugs, Tamara (site moderator)
barbs53 Member
I appreciate all the comments and am glad I joined this because some one to talk to that know the pain. I have come to find out also my carpal tunnel came back and need surgery on top of osteoarthritis and lupus too I day to my self why me but then I think there are people wrose off than me . sorry this is all new to me and some times difficult to deal with. Glad I found you all and hear your stories.
Richard Faust Community Admin
Hi again barbs53. Sorry to hear about the comobidities. Unfortunately, carpal tunnel is all too common with RA. This article from our editorial team takes a closer look: <a href='https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/carpal-tunnel-syndrome' target='_blank'>https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/carpal-tunnel-syndrome/</a>. Lupus and RA also often overlap. In fact, our contributor David wrote this article on just this topic and even the difficulty in sometimes diagnostically differentiating them: <a href='https://rheumatoidarthritis.net/living/lupus' target='_blank'>https://rheumatoidarthritis.net/living/lupus/</a>. This one from our editorial team also looks at lupus and RA: <a href='https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lupus' target='_blank'>https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lupus/</a>. I also want to let you know that we now have a sister-site for lupus at <a href='https://lupus.net/' target='_blank' rel='noopener noreferrer ugc'>https://lupus.net/</a> where you can find the same level of information for that condition as you find here for RA. Hope you find this information helpful and that you find some relief soon. Best, Richard (RheumatoidArthritis.net Team)
sejaldatta Member
Hi barbs53, I completely understand and know exactly how you feel. It's so hard to explain pain, and when you do, you just feel like no one really gets it. But know that when you feel like that, you have this amazing community to bring some positivity in to your life! With every down day, comes the great days! If you're hurting, look after number one... yourself. We're here for you!