Patients Rheumatoid arthritis
Topic of the discussion
Posted on 4/23/19 8:56 PM
Hi everyone! I was diagnosed with Rheumatoid Arthritis when I was 16 years old, and I'm 29 now. Over the years I've noticed that they aren't many resources out there for young adults to make them feel comfortable with their RA. I'm working on finding ways to tell the stories of young adults (15-35) who are dealing with (and often thriving) with their RA. If you might be interested in sharing your experiences, let me know!
Beginning of the discussion - 4/29/19Other young adults with RA https://www.carenity.us/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/other-young-adults-with-ra-913
Posted on 4/29/19 4:42 AM
@Hidden username I was diagnosed at 37. I am now 48. So not as young as you, but definitely younger than most fellow RA patients. I understand I do not match the age you are looking for, but I just wanted to commend you on taking your diagnosis with a strive to connect with other young people, help them and them help others. I think it is great and wish you the best of luck! We need more stories of those who are striving with RA. The disease definitely changes you as time goes on, but with everythig, there is a huge mental part. So if you can keep this part of the battle won, you are at so much of a better position then those that can't. It is hard, but you can do it!
Posted on 4/29/19 9:03 PM
I was diagnosed when I was 4 years old. My entire life I've been waiting or hoping some medication will heal me but that hasn't been the case. I've tried most of the biologics and have only seen side effects so I've stopped taking them. I'm 22 now and am taking little medication so I'm always in a world of pain. I'm definitely not thriving and have remained in a state of depression for awhile. It sucks having arthritis while also being depressed because I've found that I just stop doing things to help myself. I still haven't completely given up though and my next plan of attack might be in trying stelara.
Posted on 4/30/19 2:40 AM
@Hidden username I was diagnosed at age 31. Unfortunately, I had it before actually being diagnosed and post-poned going to the doctors and then when I did go, I was dismissed as it was from my carpal tunnel surgeries (had 2 on each hand) and that then prolonged the actual diagnosis and treatment. So, my fingers have already begun to bend and probably, are permanently damaged already. And time only makes it worse.
Posted on 4/30/19 2:44 AM
@Hidden username I am with you... I am definitely not thriving but am in chronic pain and depressed. You are absolutely right depression is horrible and from all the people I have spoke with that are in chronic pain they are also in depression. I struggle to just get through the day sometimes. I am also trying to keep going. I continue to take my biologic and methotrexate at this point. I take fish oil and extra virgin olive oil daily, as well. However, sometimes when I am really depressed it takes a lot for me to even take the fish oil and extra virgin olive oil.
Being young and in pain is hard. I am scare for the future. @Hidden username do you fear the future? - I do not know how you are doing it without medication. If you are not on a biologic, isn't that going to run the risk of having the progression of the disease continue? I hope you can find a biologic that does not give you side effects.
Posted on 5/1/19 5:56 AM
I was diagnosed when I was 20, though that was after 2 years of symptoms being explained away. I am 21 now. I don't have a good story to share as I am very much struggling to manage chronic pain, intense fatigue, university, and the social life of a 21 year old. However, I would love to stories of how others dealt with a similar situation.
Posted on 5/7/19 9:18 PM
@Hidden username that's one of the things I constantly worry about. One of the most stressful things as my arthritis is just getting worse and don't know if ill have to depend on someone else to help me with everyday tasks. I'm thinking of trying another biologic in stelara because I can't risk letting it get worse because that's exactly what's happening now. I was just fed up not seeing any results and only side effects from biologics. It's come to the point however where I have to try and stop it in its tracks.
Posted on 5/8/19 8:37 PM
I am 35 newly diagnosed, I have lived with chronic pain for many years due to a terrible car accident I was in 10 years ago. I dismissed the pain my self for years until it got to the point of not being able to open playdoh for my 3 year old. I am starting to discover the medication side effects are almost worse than the pain. I was a very active person and now I can barely get out of bed in the morning and all I want to do is sleep the depression is no joke and it’s taking a toll on my marriage and my son. I feel like a Guinea pig most of the time “try these meds” 2 weeks later, oh your liver is not taking that well. Try these meds, and repeat. Nothing more humiliating than puking up your breakfast in the middle of an office the size of s football field full of people that call all hear you puking. Frustrated is not even the word for it...
Posted on 5/9/19 4:29 AM
Thank you to everyone for sharing. There have been lots of ups and downs in my journey, today being a down day. Are there any things that make your days a little less painful? Especially in the morning when the stiffness sets in? Thanks!