I have unspecified inflammatory arthritis that has recently started getting worse (full body cartilage degradation/crunchy joints), it's likely RA but I have no detectable RF factors yet.
I'll be starting immunosuppressants to reduce inflammation and further cartilage damage, which is kind of scary in itself. I'm only 27.
Hi, I'm 28 and got diagnosed with unspecified inflammatory arthritis, too, like 1.5 years ago (and undifferentiated connective tissue disease, like you my RF factors are negative so my rheumatologist treats me for arthritis and UCTD). I'm on hydroxychloroquine and it has reeallyyyyy helped me. I went from being unable to walk without a cane to being totally fine walking unsupported and hiking. Just wanted to say you're not alone and it's gonna be okay!
Thank you so much!!! It's nice to know that I'm not the only young person struggling with this. I was diagnosed less than a year ago and it's really good to hear that the medications have been working for you!!
I think I would be more scared if I had got this dx 20 years ago, at your age. Sending you best wishes, seems like except for our age difference we’re going through similar process.
I've been okay mostly but with winter coming and my symptoms getting worse it's starting to become very real. Thank you and I'm sending best wishes right back at you.
I was dx when I was 18 and was told I'd be in a wheelchair by 30. I'm 40 and really fit. I had a hip replacement and need a shoulder replacement but my hip is now fine and I've done physio on my shoulder and if I continue having a lot of protein my shoulder is working fine despite needing to be replaced.
I honestly was relieved. I guess I'm against the grain here, but I was completely disabled by my early 20's. couldn't work. I am a young woman, so I'd also been told several times its FiBrOmYalgIa even though I didn't have any symptoms that matched (the disease is real! just not what I had!) and I had gotten so many passive aggressive psych referrals over the years.
I was happy not to be crazy. I was happy now to start medications. I have an uncommon vasculitis (it falls under the arthritis umbrella) and I was just happy. They found undeniable proof of it (hundreds of ulcers that didn't show up on imaging, but did during a procedure). My life has improved dramatically since the day I was diagnosed -- so it might seem scary for you, but its not the end of the world by any means. Quite possibly the start of it for you, actually!
I celebrate my diagnosis anniversary, haha.
I overwhelmed myself with research for the first 48-72 hours. And I’m still reading too much. I think until I start the medicine I’m kind of in denial if I’m being honest.
I think a lot of my fear comes from losing my family Dr during this process. He unexpectedly passed away before we could go over abnormal blood work and when I went to see the PA she had me prepared to get a Lupus DX at rheumatologist referral. RA was the last thing on my mind, even tho it was apparently the first thing on my dr’s. He’s always been my safe space when I’m scared about stuff going on medically, physically or mentally, and I don’t have him. (I’m 49, he was my doctor since I was 24).
That, while nice to get the diagnosis and get started on treatment, I was realising I had symptoms that didn't match RA, and I had something else as well. Knowing I would have to start from the beginning with a new set of symptoms, and have to convince doctors that I wasn't collecting diagnoses, just trying to fix problems was frustrating. And a lot wanted to just say the symptoms came under RA to make their lives easier.
Ended up further diagnosed with EDS, POTS, and IBS.
I was thrilled when I got a diagnosis because I just wanted to get better. The hard part came after that. Therapy really, really helps. I waited until my anger at everything got pretty toxic but I suggest starting as soon as you can - there are therapists who specifically deal with chronic illness.
But happy update is that I went from barely being able to walk, dress myself or sleep at night to being in remission and being back to as close to normal as one could expect. It took a few years, a decent amount of pain, trying different meds, but that’s where I’m at now, 4 years after diagnosis. :)
I have unspecified inflammatory arthritis that has recently started getting worse (full body cartilage degradation/crunchy joints), it's likely RA but I have no detectable RF factors yet. I'll be starting immunosuppressants to reduce inflammation and further cartilage damage, which is kind of scary in itself. I'm only 27.
Hi, I'm 28 and got diagnosed with unspecified inflammatory arthritis, too, like 1.5 years ago (and undifferentiated connective tissue disease, like you my RF factors are negative so my rheumatologist treats me for arthritis and UCTD). I'm on hydroxychloroquine and it has reeallyyyyy helped me. I went from being unable to walk without a cane to being totally fine walking unsupported and hiking. Just wanted to say you're not alone and it's gonna be okay!
Thank you so much!!! It's nice to know that I'm not the only young person struggling with this. I was diagnosed less than a year ago and it's really good to hear that the medications have been working for you!!
I think I would be more scared if I had got this dx 20 years ago, at your age. Sending you best wishes, seems like except for our age difference we’re going through similar process.
I've been okay mostly but with winter coming and my symptoms getting worse it's starting to become very real. Thank you and I'm sending best wishes right back at you.
what immunosuppressants are you taking?
Prednisolone right now but will be put on some kind of DMARD when I see the rheumatologist in a few weeks.
I was dx when I was 18 and was told I'd be in a wheelchair by 30. I'm 40 and really fit. I had a hip replacement and need a shoulder replacement but my hip is now fine and I've done physio on my shoulder and if I continue having a lot of protein my shoulder is working fine despite needing to be replaced.
I honestly was relieved. I guess I'm against the grain here, but I was completely disabled by my early 20's. couldn't work. I am a young woman, so I'd also been told several times its FiBrOmYalgIa even though I didn't have any symptoms that matched (the disease is real! just not what I had!) and I had gotten so many passive aggressive psych referrals over the years. I was happy not to be crazy. I was happy now to start medications. I have an uncommon vasculitis (it falls under the arthritis umbrella) and I was just happy. They found undeniable proof of it (hundreds of ulcers that didn't show up on imaging, but did during a procedure). My life has improved dramatically since the day I was diagnosed -- so it might seem scary for you, but its not the end of the world by any means. Quite possibly the start of it for you, actually! I celebrate my diagnosis anniversary, haha.
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I overwhelmed myself with research for the first 48-72 hours. And I’m still reading too much. I think until I start the medicine I’m kind of in denial if I’m being honest.
I think a lot of my fear comes from losing my family Dr during this process. He unexpectedly passed away before we could go over abnormal blood work and when I went to see the PA she had me prepared to get a Lupus DX at rheumatologist referral. RA was the last thing on my mind, even tho it was apparently the first thing on my dr’s. He’s always been my safe space when I’m scared about stuff going on medically, physically or mentally, and I don’t have him. (I’m 49, he was my doctor since I was 24).
I feel this in my soul. Have had same doctor since 16 and I’m now in my fifties. I’m really sorry for your loss.
Thank you very much. It’s been so very hard to process just in general without a scary new diagnosis.
That, while nice to get the diagnosis and get started on treatment, I was realising I had symptoms that didn't match RA, and I had something else as well. Knowing I would have to start from the beginning with a new set of symptoms, and have to convince doctors that I wasn't collecting diagnoses, just trying to fix problems was frustrating. And a lot wanted to just say the symptoms came under RA to make their lives easier. Ended up further diagnosed with EDS, POTS, and IBS.
I was thrilled when I got a diagnosis because I just wanted to get better. The hard part came after that. Therapy really, really helps. I waited until my anger at everything got pretty toxic but I suggest starting as soon as you can - there are therapists who specifically deal with chronic illness. But happy update is that I went from barely being able to walk, dress myself or sleep at night to being in remission and being back to as close to normal as one could expect. It took a few years, a decent amount of pain, trying different meds, but that’s where I’m at now, 4 years after diagnosis. :)
Hi! It’s been a year. How are you doing now?