New to Forum
I was diagnosed with juvenile RA when I was 9 years old, since then pain and inflammation have been a part of my life. I was diagnosed with RA as an adult and 30 + years later I am still dealing with the consequences of this disease. I have been able to fight through the pain and fatigue and not allow it to have control over me but lately that has not been possible. I have side effects of long term medicine use and now additional diseases associated with having an autoimmune disease because God forbid you can just have one. I'm having a flare up and not getting any relief which is causing some of my other health issues to flare up. I not only hear you have to get up and exercise and not give into it by my family but by my many specialist. I get up and go to work everyday but it sometimes takes all my energy and once I've gotten showered and changed I'm so exhausted I want to climb back into bed but if I want to keep my job I have to show up and preform which makes going home to exercise impossible since I'm in so much pain and so much fatigue I could fall on my face. Which you would think would make falling asleep so easy but of course sleep will usually allude me since that is when most of my joints will decide to flare up with no relief from heat, ice, pillows. So now I'm feeling like I'm getting depressed on top of everything else, which is why I looked up this forum. I'm tired of feeling like I'm alone and no one understands what I'm going through. When I was a child my mother told me to suck it up and I've been doing that for the last 30+ years and I just don't have the energy or strength to do it anymore.
Thank you for listening.
Hi Bernie215 and welcome! I am so sorry you are hurting right now. I have to say that reading your post, I know many of our members can really relate because they have written very similar things -- from the pain and exhaustion to family and friends not understanding what you are going through. I thought you might find this piece on fatigue (and the comments at the end) relatable -- https://rheumatoidarthritis.net/living/facing-fatigue/comment-page-1/#comments. You are not alone! Fatigue and an inability to get good rest are some of our top member complaints. This next piece is about OA, but really can apply to RA as well. The contributor that wrote the article deals with both RA and OA, as well as MS -- https://rheumatoidarthritis.net/news/ra-oa-pain-sleep-disturbance-depression/. Pain and fatigue and an inability to sleep can all lead to depressive episodes. If you think about it, pain and sleep deprivation are two common forms of torture! So it's not wonder that you are feeling weighed down by your RA and all the subsequent baggage it brings. Our members shared some of their sleep tips in this article -- https://rheumatoidarthritis.net/living/sleep-ra-get-good-nights-rest/comment-page-1/#comments. You have endured a lot, Bernie215. Life with a chronic condition can feel like a never ending marathon. It's ok to acknowledge that you are just plain worn out, physically and emotionally. Please don't hesitate to contact your doctor about your depression. He/she may be able to offer suggestions and treatments that can really help you feel more like yourself. And please know you are welcome here anytime you want to share or just vent. There is no need for you to "suck it up" or put on a happy face in this community. Our members get that life with RA can be a daily challenge. Thank you so much for joining and please don't hesitate to keep reaching out, should you need anything. We are glad to have you here. Best, Erin, RheumatoidArthritis.net Team Member.
Hi Bernie,
I can totally relate to your post. While I haven't had RA since I was a young child, I do juggle a number of conditions, including two autoimmune diseases. It can really drain you. I'm sorry that you are having trouble making it through the days, then feeling well enough to sleep at night.
We also have depression in common. I've battled that monster for several decades now. There have been times where a change in antidepressant medication was needed because the one I was taking at the time had stopped working. Definitely talk to your doctor(s) about this because depression can aggravate fatigue, which makes everything harder.
As far as trying to get some additional exercise or physical activity, please don't beat yourself up about it. Small efforts like five minutes of gentle stretching or range of motion exercise may make a difference in how you feel. Be sure to work with your rheumatologist to determine what is safe for you.
I hope that you begin to feel a bit better in the near future. Please know that you are welcome and encouraged to share your experience whenever you feel the need because together, we can better support each other
Best wishes, Lisa Emrich
Hi Bernie215. First, as you can see from the replies, I believe you have come to the right place to receive some support and information. A chronic condition, like RA, can no doubt wear a person down. Sometimes the emotional toll can take a back seat to the physical, but it certainly is important. This article from our editorial team looks at these aspects, with some management tips: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/.
My wife, Kelly Mack (a contributor here), was diagnosed with JRA at two years old. I know she has shared some similar experiences to yours. In fact, she recently wrote this article (partially out of frustration) on things she didn't want to hear: https://rheumatoidarthritis.net/living/things-i-dont-want-to-hear/. I share this as an example that it is o.k. to want to vent.
I know Kelly won't mind my saying that she has also been struggling recently with flares and fatigue (she just recently wrote about the possibility of medication change). I understand that the last thing you might want right now is more "advice" on exercise, but she wrote this article over the summer about trying to get some movement in and hopefully feeling better when moving is painful: https://rheumatoidarthritis.net/living/when-moving-is-painful/.
Finally, the main thing I want to emphasize is, simply, that you are not alone and are always welcome here. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)
Welcome!! I'm a couple of years post diagnosis and totally hear everything you are saying. I hope you get some relief or are able to lighten your schedule soon. Know that you are in good company.
