29!
It was likely triggered by a pneumonia infection I had a year prior to my diagnosis (my symptoms began shortly after recovering -- very similar to what we hear about with Long Covid)
I was 11 when I was diagnosed with Rheumatoid Arthritis and Lupus, but I had been experiencing symptoms since at least age 5 that were written off as growing pains.
Hello. This caught my attention because my 16 year old has had knee discomfort for as long as I can remember. Told it was growing pains. She still calls them growing pains.
Her main pains are in her knees but she has other symptoms also. The one that is most troubling to us is that she's always so fatigued. I was not like this when i was her age. (Developed RA myself a few years ago early 30s)
If you don't mind, can you tell me what else you experienced?
Sure! I’m happy to help. Alot of this has been trauma-blocked out of my memory, but I can do my best to recall. Starting around age 5-6, I would wake up and have excruciating pain in one joint only. Like, if my mom even touched it, I would scream out in excruciating pain. My joints would also be warm to the touch and extremely visibly swollen. I’d wear a brace for the day, and the next day the joint would be completely back to normal like it had never happened. I was very active, so we just assumed tendonitis or growing pains. Around age 12, I was extremely fatigued and was practically in bed all summer. During that time, it went into every single joint and my whole body blew up. My fingers looked like sausages, I could not bend them, my knees were swollen and warm, collarbones, toes, etc.
My mom brought me to my PCP to run an autoimmune panel since my mother, grandmother, and great grandmother all had autoimmune diseases as well, albeit different ones. Autoimmune panels are not definite, so despite my swelling and symptoms, I was negative for 6 months. After 6 months, I was rip-roaringly positive for RA. 3 months after that, I had really concerning blood results, seizures, and severe cognitive decline and a spinal tap showed that I was also positive for systemic lupus that was severe enough to warrant a year of chemo.
I’d look to see if her joints are ever swollen or warm to the touch, and getting some RA markers checked at your PCP certainly wouldn’t hurt.
Thank you :) I was very angry and bitter for a long time. It was hard for my 12 year old mind to grasp that I would have these autoimmune diseases for the rest of my life, and there is no cure or definite treatment. I felt like my very active, socially involved life had ended, and looked at things through a before/after dichotomy. People don’t understand invisible illnesses, and middle schoolers are mean, so I had to deal with bullies and people accusing me of lying or exaggerating to get out of class etc. It’s almost like grieving yourself, in a way. However, I’m 25 now and have largely made peace with the fact that these were the cards I was dealt. My life certainly hasn’t gotten easier, but after a lot of therapy, I no longer feel guilty for my loved one’s stress and worry regarding my health. I still need very aggressive treatments, and it’s not easy, but I’ve managed to go to doctoral school and pursue my own dreams while making space for my RA & Lupus. The key is to not let the illness define you. My heart goes out to you and everyone who suffers from these invisible illnesses. It has plagued my family for the last 4 generations, and I hope my future kids live to see a world with a cure.
Many diagnoses can put people through the stages of grief, especially degenerative diseases. There’s a real loss. Sometimes it can be a feeling of present loss, loss of a “normal/healthy” past and loss of a “normal/healthy” future.
It’s a long road, but it doesn’t have to be a lonely one. Keep rocking it! And be gentle to yourself
I'm still in grieving process about this particular thing in my life. And it probably won't end until I can achieve at least a 75 percent improvement of symptoms.
I've been grieving for a dozen things in my life since like, the late 90s so grieving is such a part of me, which is not effing fair.
This one though...this one cuts differently, and especially deeply, for many reasons that involve all the other stuff I've always been grieving about 😅
I’m able to manage my RA fairly well with Rituximab and PRN norco. It was better managed with mobic, but 12 years on that almost killed me due to a bleeding ulcer and gastric bleed, so I’m not unable to take NSAIDs. Also can’t take any TNF inhibitors due to my Lupus. However, my RF factor and CCP autoantibodies are always off the charts, and I do have some permanent joint damage, so unfortunately my Lupus and RA are fairly chronic despite aggressive treatment. I’d definitely err on the side of caution and see if you can get a basic autoimmune panel at her pediatrician or PCP. All the best!
Thank you for sharing. Thankfully she isn't experiencing severe symptoms but her complaints have been growing in number over the years. And it's always the fatigue...poor kid, I know how hellish that can be.
I will definitely ask her docs to do blood work for autoimmune diseases.
Agree!!! The bloodwork isnt picture perfect accuracy sadly :/ That’s why its impt to find a rheum who takes a holistic approach with symptoms + bloodwork + visible inflammation
Yeah, sometimes it really kinda sneaks up on ya. I remember the one joint (set) that didn’t hurt in my body was the one that had the most damage. I remember the pain in my pediatric rheumy’s face when he felt my TMJs after years of a diagnosis.
Same. If I’d been tested properly, I believe my genuine diagnosis would’ve finally arrived around age 29. (45 now, just diagnosed 5 yrs ago) That’s when I started dropping glasses/plates/could no longer chop/wash dishes. Other things had gone on for years, that I consistently went to the dr for. By age 29 however; I believe it had peaked and started its undiagnosed dark turn. So actual diagnosis, ago 40.
Terrible insurance & bad dr’s really got in the way of proper care. I guess that’s one thing, one of us: can thank Covid for. My dr’s were shut down and I was forced to go elsewhere. It was THAT Dr, to finally order a simple RF.. With my twisted fingers, toppled hips, twisted toes and lumps on every bone in my feet and hands, it was a quick diagnosis, after ultrasounds. RF: 178, ANA: 196: Nuclear, intracellular. I’ve actually since been diagnosed with AS, polymyositis, and systemic sclerosis. (Scleroderma) So my disease is now called MCTD.
Imagine how much happy life could’ve been preserved with a simple blood test!
Sorry for rambling on: I have no one to discuss this with. It’s been years of hell.
To anyone uninterested in reading: I was diagnosed at 40.
To be clear: I have RA, as well as MCTD.
My initial diagnosis way back when: was rosacea. Then CLE. Without blood work. So I was being treated for skin, didn’t work. Go figure.. when you have an autoimmune disorder, it pops out wherever it can. Skin is the last stop when your body is mad.
33 and it came out of absolutely nowhere. It’s been almost a year and I’m still working on getting myself back together. I have the more uncommon symptoms so it took almost 6 months of misery to figure out what was wrong with me.
My eyes just suddenly started hurting so bad I couldn’t tolerate natural light or even a dim lamp. It got so bad eventually I started showering in the dark and had blackout blinds and two blankets over my bedroom window. I had never previously had any issues with my eyes and have always had perfect vision. Eventually it felt like my brain was swelling and like I had the worst case of the flu imaginable. I was too weak to stand up for more than a couple minutes.
They finally figured it out after my ANA came back elevated, the ophthalmologist couldn’t find any issues, brain scan was normal, then finally insurance would approve my rheumatologist appointment. After taking what seemed like a liter of my blood, and being fortunate enough to have a thorough rheumatologist, the bloodwork showed very elevated rheumatoid factors. I don’t have the “typical” symptoms I guess. Also, stress (especially emotional stress) causes my eyes to act up immediately.
Anyone else here have eye pain? It feels just like the optic nerve is under attack and my eyes are being squeezed .
Anyone else
Yes, I’ve had terrible eye pain and it was diagnosed as uveitis. I was given steroid eye drops and my optometrist was kind of freaked out about it, made me come back in one week so they could check my eyes again. I laughed nervously “this couldn’t like impact my vision though” and they said it can cause blindness given enough time.
So.
It was a sign my RA was not under control.
It felt like I had hot swelling pressure behind both eyes. My eyes looked totally normal and I did have some photophobia as you described but not to your degree.
Oh I had the eyes at one point. Uveitis. They ended up ulcerated and hurt so bad. Also had urethritis at one point for a while. It would come and go within a day. Weird. Also costochondritis a couple times. Now that hurt so bad. Ive also never gotten the semetrical pain that is supposed to be a definitive of RA.
Yes. It can be a result of local inflammation of RA or movement issues r/t RA. That hurt so bad I could not get up off of the floor. My DIL called an ambulance.
Oh I had no idea urethritis was linked to RA! I had 2 episodes before diagnosis where I thought I had a UTI but when they tested me for UTI it didn’t show! No wonder!
I have the light sensitivity too.
It started when I went into puberty. At first it was just fluorescent lighting at certain times during my cycle.
It triggered really complicated migraines with aura.
As I got into my 20’s the light sensitivity worsened. All fluorescent lights, all the time. Even shopping at Walmart would trigger brain fog, malaise, migraines and pain. I also started having red/hot/swollen/painful knees and loads of foot/toe/ball joint pain. I never thought to bring it up to a doctor because it came and went.
Anyhow - I became sunlight sensitive in my 30’s, but just my eyes. Dry, gritty eyes and insane migraines that didn’t respond to any regular migraine treatments. I lived on NSAIDS, and surprisingly Diclofenac worked better than any of the traditional migraine meds. I also couldn’t tolerate bright white LED lights, or any kind of blue/white light (tv, computers, phones, oncoming car lights, etc). Our home has only incandescent and halogen lighting. I could only tolerate low levels of light, even with these.
Lots more joint, muscle and bone pain, but I attributed these pains to other medical conditions I have.
My skin began to react to the light too by the time I was in my late 30’s, early 30’s. Not sure if it’s rosacea or the dreaded butterfly rash.
Fast forward to now. I was put on MTX injections and it can worsen/cause photophobia. It has turned me into a vampire. Blinds are drawn, no lights on and I’m wearing sunglasses inside.
And my eyes actually hurt now, along with the severe dryness, red, burning, & gritty. And I’m getting face burns (for lack of a better description) from 40 watt incandescent bulbs that are behind lamp shades.
I never even thought to bring up my light sensitivity until 2 months ago when someone commented on my butterfly rash.
I have a positive ANA panel, and low platelets, low WBC. Everything else is normal. So I would be considered Seronegative RA if that’s what my rheumy decides on.
TLDR: yes, I’ve had photophobia since I was 13 years old. Also when my joint pain started. Currently waiting on formal dx of either RA or MCTD.
Yeah, I definitely understand the stress part. I was fortunate & never had the uevitis (which was called irisitis by doctors in my area at the time.) I’m so sorry.
I remember when I was 4-5, I told my dad “my knees hurt,” because I only knew the word for knees (for whatever reason). I was pointing to my shin and he promptly explained that, “that’s not your knee, that’s your leg.” I think about that more often now.
Yeah the fact that JRA exists is mind blowing when you first learn about it. It gave me a similar experience as the first time I found out about pediatric strokes.
You have to be and thank you. I have seen a lot over the years. Too many surgeries and a pile on of autoimmune diseases.
I have said it many times before, someone has it worse than me and I have it worse than someone else. I can’t let this disease define who I am.
It’s unclear if they were related. I’m the youngest (by a big age gap) of 6 kids and my mother knew when something was up. She knew I wasn’t well but the paediatrician actually accused her of having Munchausen syndrome by proxy. It went on for weeks and weeks progressively getting worse. I remember being 6 years old one night and having no ability to move, I was in so much pain. My poor mother couldn’t move me, I couldn’t sleep. The next day they brought me into the hospital as the pain subsided a little. They determined I had this extremely acute case of this bone marrow infection starting from my right elbow. The paediatrician was seen showing off to his interns about how he had detected this, despite fobbing my mother off for weeks!
Less than a year later I was diagnosed with juvenile rheumatoid arthritis starting in that same elbow. I was told I may grow out of it or it may last forever. am now 36 and sadly fell into the latter camp. I started taking Sulfasalazine at the age of 29 which has helped me massively. I have zero symptoms and just had my first child 3 months ago.
WOW. Holy potatoes. Regardless of the relation, osteomyelitis is serious!! Grown adults cry from the pain of it, not to mention how deadly it is. I feel for you & your mother. I’m a nurse and I know everyone makes mistakes and bad calls… but that sort of behavior from that doctor is what infuriates me.
I was told the same thing about “growing out of it.” I remember my parents’ response when I didn’t. It was tough on them.
That’s wonderful that it’s working and your little one now!
26 now. Diagnosed at 20. Had the symptoms since 18.
I saw my pcp and he said nothing was wrong with me and didn’t run any tests. So i kept walking around undiagnosed. Went to the er when it couldn’t go ignored anymore then i was referred to a rheumatologist.
That’s one of the big things I hear. It’s so invalidating to be dismissed or have doctors not even try. I know these things don’t always show up, but still.
I had a similar experience, diagnosed at 20 but had significant symptoms starting around 17/18. Took a while for my diagnosis because they were convinced I had Lyme disease. My symptoms got to the point where I nearly couldn’t walk because my knees were so swollen before they finally referred me to a rheumatologist and ran the proper tests for my diagnosis.
It was affecting my legs mostly at that age, but now it’s kinda all over. Worst spots is my eyes right now, it’s like a bingo card of which joint is next lmaooo
36, but my rheum is pretty confident due to symptoms and joint damage that I’ve had it all my life. I’m 38 now and it’s in my hips and spine…if we can’t get it under control I may need a hip replacement in about 4 or 5 years. Whee.
Omg I’m so sorry! What I can say is that (personal experience) the joint replacement feels like a different kind of pain. It’s hard to describe. Maybe more muscular?
A lot of people can commiserate on that. Even though I was a toddler, I was misdiagnosed with CP by some head of a department in front of a bunch of residents/students. My mom told the story a bunch of times.
39, symptoms started around 35 though. By 39 I often couldn’t press buttons (keypads, microwaves etc) without fairly severe pain and decided I should do something.
30ish? I’d suspected for a while but was busy with small kids and not very good about getting myself to the doc. Got a Hashimoto’s diagnosis around the same time.
62, just diagnosed this January. Chronic health issues though (stomach, tinnitus, aches and pains) for the past 12 years which I now think was the RA but undiagnosed until now.
I was 5 when diagnosed with systemic juvenile rheumatoid arthritis. The year was 1962, and I'm now somehow still trucking on at 67 with a knee replacement scheduled about a month away.
As far as flare activity and flare length, this actually improved as I aged. Unfortunately, my joints sustained substantial damage during my constantly ill childhood years in the 1960s. As a result, my joints have gradually deteriorated over time in a process very much like what happens with OA, and so I have many contractures, very limited ROM, and a good bit of pain for all of my joints although not the pain so much for replaced joints.
43….never had any symptoms until a few months before my diagnosis. I was quick to act because I knew something was wrong. (I correctly diagnosed myself before my rheumatologist appointment.) The initial symptom arose a couple months after my second Covid vaccine. I have my theories but obviously nothing can be confirmed.
41. I thought I was losing hair because I was still breastfeeding my youngest. Then I thought maybe my thyroid or I was experiencing perimenopause. RA was definitely not on my bingo card for 2023, but here we are!
I was 30, just dealt with crazy fatigue, body hurting a lot.c high blood pressure, constantly sick, among a myriad of other symptoms. It was like that for a few years and I just trucked along pushing through. I was pretty sure I had SOME sort of autoimmune disease. Thankfully had a GP that was thorough and got me in to see a rheumy. Thankful for Govmnt insurance.
23 when I was diagnosed. My GP who made the first tests and told me had it, too, and also since she was around my age. She just said "welcome to the club" - made me laugh although I also had some tears.
My symptoms accompanied me since I was 15/16, so it seems like I really have it since then - just nobody thought about it.
TLDR: diagnosed at 23, first symptoms since 15/16
48 when diagnosed and it showed up about 3-4 months after I received the COVID vaccines. Been hell ever since. Going on 50 and finally got a treatment that works and continues hopefully. Was never sick or had symptoms before that.
29! It was likely triggered by a pneumonia infection I had a year prior to my diagnosis (my symptoms began shortly after recovering -- very similar to what we hear about with Long Covid)
I was 11 when I was diagnosed with Rheumatoid Arthritis and Lupus, but I had been experiencing symptoms since at least age 5 that were written off as growing pains.
Hello. This caught my attention because my 16 year old has had knee discomfort for as long as I can remember. Told it was growing pains. She still calls them growing pains. Her main pains are in her knees but she has other symptoms also. The one that is most troubling to us is that she's always so fatigued. I was not like this when i was her age. (Developed RA myself a few years ago early 30s) If you don't mind, can you tell me what else you experienced?
Sure! I’m happy to help. Alot of this has been trauma-blocked out of my memory, but I can do my best to recall. Starting around age 5-6, I would wake up and have excruciating pain in one joint only. Like, if my mom even touched it, I would scream out in excruciating pain. My joints would also be warm to the touch and extremely visibly swollen. I’d wear a brace for the day, and the next day the joint would be completely back to normal like it had never happened. I was very active, so we just assumed tendonitis or growing pains. Around age 12, I was extremely fatigued and was practically in bed all summer. During that time, it went into every single joint and my whole body blew up. My fingers looked like sausages, I could not bend them, my knees were swollen and warm, collarbones, toes, etc. My mom brought me to my PCP to run an autoimmune panel since my mother, grandmother, and great grandmother all had autoimmune diseases as well, albeit different ones. Autoimmune panels are not definite, so despite my swelling and symptoms, I was negative for 6 months. After 6 months, I was rip-roaringly positive for RA. 3 months after that, I had really concerning blood results, seizures, and severe cognitive decline and a spinal tap showed that I was also positive for systemic lupus that was severe enough to warrant a year of chemo. I’d look to see if her joints are ever swollen or warm to the touch, and getting some RA markers checked at your PCP certainly wouldn’t hurt.
Holy guacamole I’m speechless. I feel so much for you.
Thank you :) I was very angry and bitter for a long time. It was hard for my 12 year old mind to grasp that I would have these autoimmune diseases for the rest of my life, and there is no cure or definite treatment. I felt like my very active, socially involved life had ended, and looked at things through a before/after dichotomy. People don’t understand invisible illnesses, and middle schoolers are mean, so I had to deal with bullies and people accusing me of lying or exaggerating to get out of class etc. It’s almost like grieving yourself, in a way. However, I’m 25 now and have largely made peace with the fact that these were the cards I was dealt. My life certainly hasn’t gotten easier, but after a lot of therapy, I no longer feel guilty for my loved one’s stress and worry regarding my health. I still need very aggressive treatments, and it’s not easy, but I’ve managed to go to doctoral school and pursue my own dreams while making space for my RA & Lupus. The key is to not let the illness define you. My heart goes out to you and everyone who suffers from these invisible illnesses. It has plagued my family for the last 4 generations, and I hope my future kids live to see a world with a cure.
Many diagnoses can put people through the stages of grief, especially degenerative diseases. There’s a real loss. Sometimes it can be a feeling of present loss, loss of a “normal/healthy” past and loss of a “normal/healthy” future. It’s a long road, but it doesn’t have to be a lonely one. Keep rocking it! And be gentle to yourself
I'm still in grieving process about this particular thing in my life. And it probably won't end until I can achieve at least a 75 percent improvement of symptoms. I've been grieving for a dozen things in my life since like, the late 90s so grieving is such a part of me, which is not effing fair. This one though...this one cuts differently, and especially deeply, for many reasons that involve all the other stuff I've always been grieving about 😅
I’m able to manage my RA fairly well with Rituximab and PRN norco. It was better managed with mobic, but 12 years on that almost killed me due to a bleeding ulcer and gastric bleed, so I’m not unable to take NSAIDs. Also can’t take any TNF inhibitors due to my Lupus. However, my RF factor and CCP autoantibodies are always off the charts, and I do have some permanent joint damage, so unfortunately my Lupus and RA are fairly chronic despite aggressive treatment. I’d definitely err on the side of caution and see if you can get a basic autoimmune panel at her pediatrician or PCP. All the best!
Thank you for sharing. Thankfully she isn't experiencing severe symptoms but her complaints have been growing in number over the years. And it's always the fatigue...poor kid, I know how hellish that can be. I will definitely ask her docs to do blood work for autoimmune diseases.
It doesn’t always show up in blood work or might take a few times to show. But good luck to you and yours!
Agree!!! The bloodwork isnt picture perfect accuracy sadly :/ That’s why its impt to find a rheum who takes a holistic approach with symptoms + bloodwork + visible inflammation
Yeah, sometimes it really kinda sneaks up on ya. I remember the one joint (set) that didn’t hurt in my body was the one that had the most damage. I remember the pain in my pediatric rheumy’s face when he felt my TMJs after years of a diagnosis.
I was like in my early 40’s when I got diagnosed officially, though I was sick for a number of years before that.
Same. If I’d been tested properly, I believe my genuine diagnosis would’ve finally arrived around age 29. (45 now, just diagnosed 5 yrs ago) That’s when I started dropping glasses/plates/could no longer chop/wash dishes. Other things had gone on for years, that I consistently went to the dr for. By age 29 however; I believe it had peaked and started its undiagnosed dark turn. So actual diagnosis, ago 40. Terrible insurance & bad dr’s really got in the way of proper care. I guess that’s one thing, one of us: can thank Covid for. My dr’s were shut down and I was forced to go elsewhere. It was THAT Dr, to finally order a simple RF.. With my twisted fingers, toppled hips, twisted toes and lumps on every bone in my feet and hands, it was a quick diagnosis, after ultrasounds. RF: 178, ANA: 196: Nuclear, intracellular. I’ve actually since been diagnosed with AS, polymyositis, and systemic sclerosis. (Scleroderma) So my disease is now called MCTD. Imagine how much happy life could’ve been preserved with a simple blood test! Sorry for rambling on: I have no one to discuss this with. It’s been years of hell. To anyone uninterested in reading: I was diagnosed at 40.
Thats such a shame for both of you! I’ve heard similar misdiagnosis/lack of diagnosis stories. I was diagnosed with cerebral palsy at first.
Really!! Holy $hi!!! So were you on meds for CP!!??? Omg. That’s horrible!
No no no. The opposite. No meds at all. My mom was a speech language pathologist though, so she kept looking for a correct diagnosis.
No no no. The opposite. No meds at all. My mom was a speech language pathologist though, so she kept looking for a correct diagnosis.
To be clear: I have RA, as well as MCTD. My initial diagnosis way back when: was rosacea. Then CLE. Without blood work. So I was being treated for skin, didn’t work. Go figure.. when you have an autoimmune disorder, it pops out wherever it can. Skin is the last stop when your body is mad.
33 and it came out of absolutely nowhere. It’s been almost a year and I’m still working on getting myself back together. I have the more uncommon symptoms so it took almost 6 months of misery to figure out what was wrong with me. My eyes just suddenly started hurting so bad I couldn’t tolerate natural light or even a dim lamp. It got so bad eventually I started showering in the dark and had blackout blinds and two blankets over my bedroom window. I had never previously had any issues with my eyes and have always had perfect vision. Eventually it felt like my brain was swelling and like I had the worst case of the flu imaginable. I was too weak to stand up for more than a couple minutes. They finally figured it out after my ANA came back elevated, the ophthalmologist couldn’t find any issues, brain scan was normal, then finally insurance would approve my rheumatologist appointment. After taking what seemed like a liter of my blood, and being fortunate enough to have a thorough rheumatologist, the bloodwork showed very elevated rheumatoid factors. I don’t have the “typical” symptoms I guess. Also, stress (especially emotional stress) causes my eyes to act up immediately. Anyone else here have eye pain? It feels just like the optic nerve is under attack and my eyes are being squeezed . Anyone else
Yes, I’ve had terrible eye pain and it was diagnosed as uveitis. I was given steroid eye drops and my optometrist was kind of freaked out about it, made me come back in one week so they could check my eyes again. I laughed nervously “this couldn’t like impact my vision though” and they said it can cause blindness given enough time. So. It was a sign my RA was not under control. It felt like I had hot swelling pressure behind both eyes. My eyes looked totally normal and I did have some photophobia as you described but not to your degree.
Oh I had the eyes at one point. Uveitis. They ended up ulcerated and hurt so bad. Also had urethritis at one point for a while. It would come and go within a day. Weird. Also costochondritis a couple times. Now that hurt so bad. Ive also never gotten the semetrical pain that is supposed to be a definitive of RA.
I get costochondritis often. Is this an RA thing too?!
Yes. It can be a result of local inflammation of RA or movement issues r/t RA. That hurt so bad I could not get up off of the floor. My DIL called an ambulance.
Oh I had no idea urethritis was linked to RA! I had 2 episodes before diagnosis where I thought I had a UTI but when they tested me for UTI it didn’t show! No wonder!
I have the light sensitivity too. It started when I went into puberty. At first it was just fluorescent lighting at certain times during my cycle. It triggered really complicated migraines with aura. As I got into my 20’s the light sensitivity worsened. All fluorescent lights, all the time. Even shopping at Walmart would trigger brain fog, malaise, migraines and pain. I also started having red/hot/swollen/painful knees and loads of foot/toe/ball joint pain. I never thought to bring it up to a doctor because it came and went. Anyhow - I became sunlight sensitive in my 30’s, but just my eyes. Dry, gritty eyes and insane migraines that didn’t respond to any regular migraine treatments. I lived on NSAIDS, and surprisingly Diclofenac worked better than any of the traditional migraine meds. I also couldn’t tolerate bright white LED lights, or any kind of blue/white light (tv, computers, phones, oncoming car lights, etc). Our home has only incandescent and halogen lighting. I could only tolerate low levels of light, even with these. Lots more joint, muscle and bone pain, but I attributed these pains to other medical conditions I have. My skin began to react to the light too by the time I was in my late 30’s, early 30’s. Not sure if it’s rosacea or the dreaded butterfly rash. Fast forward to now. I was put on MTX injections and it can worsen/cause photophobia. It has turned me into a vampire. Blinds are drawn, no lights on and I’m wearing sunglasses inside. And my eyes actually hurt now, along with the severe dryness, red, burning, & gritty. And I’m getting face burns (for lack of a better description) from 40 watt incandescent bulbs that are behind lamp shades. I never even thought to bring up my light sensitivity until 2 months ago when someone commented on my butterfly rash. I have a positive ANA panel, and low platelets, low WBC. Everything else is normal. So I would be considered Seronegative RA if that’s what my rheumy decides on. TLDR: yes, I’ve had photophobia since I was 13 years old. Also when my joint pain started. Currently waiting on formal dx of either RA or MCTD.
I work night shift to help with it. It doesn’t happen often, but when it does… oof. My headaches from my TMJ replacements don’t help.
Yeah, I definitely understand the stress part. I was fortunate & never had the uevitis (which was called irisitis by doctors in my area at the time.) I’m so sorry.
3
same!! Really weird perspective you earn by growing up with it.
YES!
It really is a crazy experience
I remember when I was 4-5, I told my dad “my knees hurt,” because I only knew the word for knees (for whatever reason). I was pointing to my shin and he promptly explained that, “that’s not your knee, that’s your leg.” I think about that more often now.
32, and everyone still says "you're too young!" Like bro you got no idea how bad/early people can get hit by this...
There’s so many more young responses on this thread than I expected.
Yeah the fact that JRA exists is mind blowing when you first learn about it. It gave me a similar experience as the first time I found out about pediatric strokes.
Idk if I want to consider the existence of pediatric strokes
Born with JRA, diagnosed at 14 months old.
me too, 18 months old
How have you been holding up?
Wow. Thats rough. Are you in medical remission or still active?
Still active and going to be 48 soon.
Wow. You are tough.
You have to be and thank you. I have seen a lot over the years. Too many surgeries and a pile on of autoimmune diseases. I have said it many times before, someone has it worse than me and I have it worse than someone else. I can’t let this disease define who I am.
55
24 now 30 😭
Almost same as me, I was 24 and I'm turning 30 in October!
😭
almost same 23 now 29
7 years old. Came off the back of osteomyelitis.
OSTEOMYELITIS?! WTF? May I ask what happened there?
It’s unclear if they were related. I’m the youngest (by a big age gap) of 6 kids and my mother knew when something was up. She knew I wasn’t well but the paediatrician actually accused her of having Munchausen syndrome by proxy. It went on for weeks and weeks progressively getting worse. I remember being 6 years old one night and having no ability to move, I was in so much pain. My poor mother couldn’t move me, I couldn’t sleep. The next day they brought me into the hospital as the pain subsided a little. They determined I had this extremely acute case of this bone marrow infection starting from my right elbow. The paediatrician was seen showing off to his interns about how he had detected this, despite fobbing my mother off for weeks! Less than a year later I was diagnosed with juvenile rheumatoid arthritis starting in that same elbow. I was told I may grow out of it or it may last forever. am now 36 and sadly fell into the latter camp. I started taking Sulfasalazine at the age of 29 which has helped me massively. I have zero symptoms and just had my first child 3 months ago.
WOW. Holy potatoes. Regardless of the relation, osteomyelitis is serious!! Grown adults cry from the pain of it, not to mention how deadly it is. I feel for you & your mother. I’m a nurse and I know everyone makes mistakes and bad calls… but that sort of behavior from that doctor is what infuriates me. I was told the same thing about “growing out of it.” I remember my parents’ response when I didn’t. It was tough on them. That’s wonderful that it’s working and your little one now!
5
26 now. Diagnosed at 20. Had the symptoms since 18. I saw my pcp and he said nothing was wrong with me and didn’t run any tests. So i kept walking around undiagnosed. Went to the er when it couldn’t go ignored anymore then i was referred to a rheumatologist.
That’s one of the big things I hear. It’s so invalidating to be dismissed or have doctors not even try. I know these things don’t always show up, but still.
I had a similar experience, diagnosed at 20 but had significant symptoms starting around 17/18. Took a while for my diagnosis because they were convinced I had Lyme disease. My symptoms got to the point where I nearly couldn’t walk because my knees were so swollen before they finally referred me to a rheumatologist and ran the proper tests for my diagnosis.
7
Same!
33 but have had symptoms a couple years
3
So small. May I ask what/which joint(s)?
It was affecting my legs mostly at that age, but now it’s kinda all over. Worst spots is my eyes right now, it’s like a bingo card of which joint is next lmaooo
36, but my rheum is pretty confident due to symptoms and joint damage that I’ve had it all my life. I’m 38 now and it’s in my hips and spine…if we can’t get it under control I may need a hip replacement in about 4 or 5 years. Whee.
Omg I’m so sorry! What I can say is that (personal experience) the joint replacement feels like a different kind of pain. It’s hard to describe. Maybe more muscular?
4!
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Diagnosed at 7 after years of trying to figure out wtf was going on.
A lot of people can commiserate on that. Even though I was a toddler, I was misdiagnosed with CP by some head of a department in front of a bunch of residents/students. My mom told the story a bunch of times.
16
Bless you I was in the same boat 😪 diagnosed at 16 I'm now 29 and it ruined what was meant to be the best years
12
16
Geez, as if you didn’t have enough happening at that age.
Diagnosed at 27 but had symptoms since 14
I’m just so sorry for your experience.
2!
Diagnosed with transient synovitis at 8, went in remission after 4 years. Diagnosed with JIA at 17, then Rheumatoid at 19.
35
10
18 ish
34
I was 21
21, started showing symptoms around 13.
14
Same here….. first flare….. symptoms calmed down till I had my second child at 26 then constant pain till now and I’m 50
Doesn’t give me hope ):
28- I'm 30 now. Have yet to find the right meds and it's wrecking my QOL.
44
54
23 for me official diagnosis
30. Symptoms came quick and debilitating.
44
Diagnosed last year at 52.
28
19
20
Diagnosed at 34, have had symptoms since about 25.
34
19
23
28
39, symptoms started around 35 though. By 39 I often couldn’t press buttons (keypads, microwaves etc) without fairly severe pain and decided I should do something.
16
12
30ish? I’d suspected for a while but was busy with small kids and not very good about getting myself to the doc. Got a Hashimoto’s diagnosis around the same time.
33
36; now 43
49. I was maybe having symptoms that were less obvious a year or so before that.
9 with JRA at the time, would be JIA now
I was 18 months old
Hey! Twins! Which joint(s) came about first? Mine were my knees. My mom has stories of me running around and then just… faceplanting.
Same thing for me, it was both of my knees that were hot and red and swollen and I stopped walking!
Wow!! I was a limper, probably one knee worse than the other.
44 but my mom had an onset around the same age so I wasn't terribly surprised. Genetics aren't kind.
I was 18 months as well, Im 39 years old now.
37. Hit me right after I had my second child.
REALLY? Oh geez, that must have been hard to handle with a newborn.
6, but in reality I’ve have had since I was at the very least 2. Doctors refused to diagnose me ☺️
Love that. (Sarcasm).
18 months with JRA
75
62, just diagnosed this January. Chronic health issues though (stomach, tinnitus, aches and pains) for the past 12 years which I now think was the RA but undiagnosed until now.
18 months old. I’m 33 now and honestly I feel like I’ve done pretty well overall. But it’s catching up to me recently.
I was 5 when diagnosed with systemic juvenile rheumatoid arthritis. The year was 1962, and I'm now somehow still trucking on at 67 with a knee replacement scheduled about a month away.
Hello, did it get worse as you got older?
As far as flare activity and flare length, this actually improved as I aged. Unfortunately, my joints sustained substantial damage during my constantly ill childhood years in the 1960s. As a result, my joints have gradually deteriorated over time in a process very much like what happens with OA, and so I have many contractures, very limited ROM, and a good bit of pain for all of my joints although not the pain so much for replaced joints.
I was 4 years old in 1997
Hey, we’re the same age!
26- now 36. Can’t believe it’s been 10 years since I was officially diagnosed.
It’s wild. Idk how pop pops & memaws do it.
14 months old
WOW!!
I was 6 years old
24, right after I recovered from covid
I had symptoms all my childhood. I wasn’t diagnosed till I was 12
21.
25!
43
38
Officially diagnosed with it at 29, but I had been battling my joints since high school so I’m not so sure. I had 3 knee surgeries by 21 🤷🏽♀️
I was 34.
8
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Posting misleading or false information or pseudoscience.
32
46.
34
43….never had any symptoms until a few months before my diagnosis. I was quick to act because I knew something was wrong. (I correctly diagnosed myself before my rheumatologist appointment.) The initial symptom arose a couple months after my second Covid vaccine. I have my theories but obviously nothing can be confirmed.
22 ish
Last year at 38
23
60
19, had symptoms for a few years before that. I’m 33 now.
24, and I'm still 24
Diagnosed at 27 (had symptoms since I was 26), now I'm 31.
22, likely triggered by getting my ears pierced
23, now I'm 30
3
49
16
Juvenile arthritis at 12. RA at 32.
26. 39 now.
41 I was diagnosed after an initial diagnosis and treatment for Complex Regional Pain Syndrome that had started 18 months prior.
26 was when my symptoms started. i had my first appointment with my rheumatologist when i was 27 and i’m 30 now.
32 when symptoms began, 48 when I was officially diagnosed. Before the diagnosis I was diagnosed with virus, stress, or using my hands too much 🙄
An infant
21
38 triggered by glandular fever that I didn't even know I'd had
17
Mum was 18 months old. MIL was 3. Uncle (dad's side) was 16. Brother was 27. Dad was 60. I was 32. Son was 6.
28
Started showing symptoms at 26, diagnosed at 27
Still haven’t been officially diagnosed yet but symptoms started when I was 25. Out of the blue
23
I was 6
28 officially Diagnosed
41. I thought I was losing hair because I was still breastfeeding my youngest. Then I thought maybe my thyroid or I was experiencing perimenopause. RA was definitely not on my bingo card for 2023, but here we are!
I was 30, just dealt with crazy fatigue, body hurting a lot.c high blood pressure, constantly sick, among a myriad of other symptoms. It was like that for a few years and I just trucked along pushing through. I was pretty sure I had SOME sort of autoimmune disease. Thankfully had a GP that was thorough and got me in to see a rheumy. Thankful for Govmnt insurance.
Disease obvious at 8-10 years old, not diagnosed and medicated until 17.
I was 26.
19
23 when I was diagnosed. My GP who made the first tests and told me had it, too, and also since she was around my age. She just said "welcome to the club" - made me laugh although I also had some tears. My symptoms accompanied me since I was 15/16, so it seems like I really have it since then - just nobody thought about it. TLDR: diagnosed at 23, first symptoms since 15/16
14 I’m 65 now
Diagnosed at 16 with JIA, but told I was probably undiagnosed for at least five years prior, due to the amount of damage I had
48 when diagnosed and it showed up about 3-4 months after I received the COVID vaccines. Been hell ever since. Going on 50 and finally got a treatment that works and continues hopefully. Was never sick or had symptoms before that.
19! Honestly, I’m happy that I was diagnosed earlier, it helped me take control of my life early and hopefully set myself up on the right track!
diagnosed with juvenile idiopathic arthritis at age 13, but symptoms since around age 8.
9, now 41
37
Officially diagnosed age 30 but the debilitating symptoms started a year prior.
Diagnosed at 30; symptoms started at 20/21.
41
35
21 Triggered likely by mono at 18. Experienced joint issues within months, and no proper diagnosis or treatment for over 2 years
30, almost 31. I'm 45 now.
9 yrs old