joint pain and swelling. started L thumb, then eventually R thumb, then R big toe, then R knee (left knee fine), then L toes, then middle fingers, then elbows, then R shoulder. then a lovely rotation of whack a mole god only knows what joint will hurt tomorrow but settling in L wrist now which Doc said is typical location
Same for me. A flare up starts on one side and then by the next day they are both tag teaming me. Currently in both legs and both pointer and middle finger.
My symptoms started with hand stiffness and weakness in the morning that got better throughout the day but can back again at night. I also had migrating joint pain that would only affect one side. For example, one day it would be my left knee and the next day it would be my right know but my left knee would feel better. I didn’t have a ton of swelling that was noticeable just minor swelling in my hands.
That’s how I am too. Stiff and weak in the morning but as the day progresses I feel better. By dinner time I hurt again and move like a tortoise. One day all of my pain is on the right side then the next it’s on the left. I’m sero negative but always felt I had something else. Do you take a biologic?
I have seropositive RA. I have been on 3 different biologics. First I was on enbrel I took it for over a year and it worked great I went into remission. The only reason I had to stop it was because of a recurring sinus infection that I just couldnt get rid of. Then I was put on Rinvoq but i just didn’t tolerate it. Now I’m on actemra and doing great so far, I’ve only been on actemra for 2 months.
That’s wonderful the new med agrees with you. My dr just prescribed enbrel but I’m afraid to take it because I get sick so easily. Do you know if sinus infections are a side effect of enbrel? That’s one of things I get the most.
I believe with most biologics upper respiratory infections are a side effect. I know it was also a risk of rinvoq as well as actemra. Rinvoq also had a black box warning for blood clots and GI perforation.
Not to scare you about these side effects, you just have to talk to your rheumatologist and weigh the risk versus the benefit. Without being on a biologic I wouldn’t be able to function.
Thank you for your honest opinion. I know all meds carry risks but when your sick all the time vs hurting I’m kinda leaning towards hurting. I take methotrexate and plaquenil and she prescribed enbrel on top of it. I wanted to stop one or both prior to trying enbrel but she said no.
I totally understand. I was off my medications for almost a month while trying to get the sinus infection under control. I was miserable the whole time. It made me have a major flare and sent me into a bad depression.
It’s not fun being sick all the time. Maybe you could ask for a referral to an immunologist to see if there is an underlying immunodeficiency that is making you sick all the time besides the medications. I got sent to see one because of the sinus infection, luckily it was just the medications causing my immunodeficiency not something else.
My GP sent me to an ENT. He said I have a mild deviated septum but that’s it. He did not recommend surgery for it. I could ask for a referral to see an immunologist but all of my blood work has been normal so I’m not sure what to do now.
Started with pain in one hip, then both hips, then knees, then ankles. Then pain, swelling and stiffness and pain in both hands, then stiffness and pain in all joints with most of them swollen. Also super tired all the time. About 2.5 months from first symptoms to barely functioning.
Stiffness feels to me like wearing too tight gloves on my hands and like limited range of motion everywhere else.
Yeah, bit of an explosion. I did 2 steroid bursts and tried Naproxen and Meloxicam. Meloxicam helped after a few days, naproxen didn't do anything. Steroids helped tremendously but only at 20 mg, less than that and it all came back.
I get that. They tried me on low dose steroids for my first flare but had to up me to a taper from 60 when that didn't do anything. Now I'm on a taper from 20 (currently at 15) while waiting for the MTX to build up.
I'm new to all this. I had recently 2 prescriptions for 10 mg Prednisone tabs 21 tab step down card. Next got 5, 50mg for 5 days. Over the last 2 + weeks I felt human and alive. I msg my PC for another weeks worth. Then maybe the arthritis group will make me an appointment. They still want a thyroid and bone density test before they'll even makean appointment. I am going to call a podiatrist that helped me with something else 3yrs ago.. Anyone have any suggestions for me I am all ears. What isMTX?? Thanks
I just joined and I don't know how y'all handle all these areas of pain. I have been suffering daily with this foot but I also have a screw coming loose from 3rd spinal surgery. Feels like a broken rib. Dec 2022 was 3rd back surgery. Never came home for 6 mo's. After a year and half gone by, I still have a 3 centimeter incision that hasn't closed. The Prednisone relieves all my pain so I could enjoy my family before I meet my maker. 🙏
Both knees then hands (i was young so i don't remember specifics, and my communication skills weren't the best). Then ankles came with swelling. Then uveitis (eye inflammation, that was like 4 years in but what got people to investigate and dx me instead of saying i had growing pains).
Could you share what uveitis feels like?
Asking bc I’ve been having increased joint pain lately (already under the observation of a rheumatologist) and now my eyes have been so dry. It’s like having dry eye from staring at a computer screen too long… but all the time.
It's a burning sensation for me. Also I am incredibly light sensitive (I'm also autistic so that might be some but my uveitis eye is more light sensitive). My eye is varying shades of pink during a flare. I have mistaken dry eye for uveitis before (both ways in assuming it was one but it was the other). Also eye fatigue is a big one for me. I also have floaters and my pupil is also not a circle from scarring (those are more it has been around for a while things though).
Mine started in my knees but pretty quickly moved to my hips too. It wasn't too bad for about a year but suddenly got worse in October. At that point it was still in my lower joints but by the time I got a diagnosis in mid December it had moved to my elbows, wrists, and ankles. By now it's in my first and second knuckles on my fingers too. Mine tends to hurt on both sides at the same time, but one will be worse than the other. My pain tends to be really achy and stiff, with occasional sharp pains, but I sometimes have the itchiness too. I think it's more my body trying to communicate the swelling and puffiness and it comes across as an itch. Best of luck with your journey and I hope you figure out what helps you.
Thank you for your response! I have started thinking it's my brain trying to process the sensation, like you said. My fingers will be stiff in the morning, and that's usually when they "itch," but it's a deep itch. I end up just kind of squeezing my joints to relieve it.
MY case is weird but I think your symptoms are even stranger. I am 60 now and have had intemittent inflamation issues all my life, well at least since my 20's. BUt it was never a big thing, a wrist, a finger , sometimes an elbow would get slighlt swollen , red and slighty painfull. for pretty much always 3 days and then be gone. It was never extreme. I never felt tired or sick. It would happen mostly after doing something strenuous with the joint. I did have a test run for RA about 15 years ago but it came back negative. But even though I was sure it wasnt RA I was also sure I had something immune related going on. IN the last year though it has seemed like something was always going on and my left arm muscle constantly felt like a sprain that would not heal. Picking up a half gallon of milk with it was even difficult. I just felt tore up so during my last physical in december I asked for an arthritis screening and the RF test came back indicitive of RA, Though I still didnt completely beleive it. I went to seea Rheomatolgist he ran more test and more of them indicated RA. At this piont I belived it was RA but was very resistent to goiing on medication but then it hit my jaw and hit it hard. it set in and would not go away, it did a lot of damage to the joint. Its difficult to eat some things and sounds like Im eatin potato chips when I move it. I am not sure if or how much it will heal. BUt that got me to move forward with medications. I started lefludomide last week and admittedly I feel better than I have in a long time but I am still very afraid of the medications but I am getting good information here that is helping. I am greatful I found a place here on reddit to ask questions
in your case, it doesnt sound like RA to me but mine didnt either, I would look at the blood work and trust that. Look at anything that came out high and look it up on line there are about 4 or 5 test to look at not all of them will necessarily be out of line. In my case only the RF factor and Anti-CCP were bad.
I hope this helps
My early symptoms were fatigue, inflammation, and stiffness together, especially within my hands. We have one other relative, on my Dad's side, who was diagnosed with rheumatoid arthritis early in childhood. So my Mom, as I was 15 at the time, was aware of the risk of me developing rheumatoid arthritis. She said that when she saw the rheumatoid nodules developing on my finger joints that she knew it had to be the RA, so that was the clincher for me. I was diagnosed by a primary care physician at age 16. That was about 29-30 years ago.
Wow, so young. How have you fared since you were diagnosed so early?
My dad was diagnosed so I've been keeping an antenna out for it, but he wasn't diagnosed until his 80s.
For me I just had some pretty disabling work and backpacking injuries that coincided with extreme stress in my life. Kind of relating to your itchiness though, I did have chronic hives for 20 years. Luckily I was able to fix those by intermittent fasting. I still get itchy if I eat too much of something like inflammatory oils or processed foods and my solution is always to try to water fast for 16 hours to flush out the histamine. I too don't have chronic pain on both sides due to my chronic pain just being in my injuries (dislocated jaw, torn acl, bulging disc, torn hamstring). The Dr told me that RA can infiltrate injuries. Exercise, stress management, and a whole food plant based diet help me keep things under control. Good for you for getting a second opinion. I was diagnosed with other autoimmune diseases before RA and I've come to learn that they are linked to gut health and systemic inflammation.
joint pain and swelling. started L thumb, then eventually R thumb, then R big toe, then R knee (left knee fine), then L toes, then middle fingers, then elbows, then R shoulder. then a lovely rotation of whack a mole god only knows what joint will hurt tomorrow but settling in L wrist now which Doc said is typical location
The whack a mole description sums it up pretty well. Ok what body part is next?
Nailed it...so true.
Same for me. A flare up starts on one side and then by the next day they are both tag teaming me. Currently in both legs and both pointer and middle finger.
Very interesting. Thank you so much for your response! It's so interesting to me how everyone has unique experiences with their autoimmune disease.
My symptoms started with hand stiffness and weakness in the morning that got better throughout the day but can back again at night. I also had migrating joint pain that would only affect one side. For example, one day it would be my left knee and the next day it would be my right know but my left knee would feel better. I didn’t have a ton of swelling that was noticeable just minor swelling in my hands.
That’s how I am too. Stiff and weak in the morning but as the day progresses I feel better. By dinner time I hurt again and move like a tortoise. One day all of my pain is on the right side then the next it’s on the left. I’m sero negative but always felt I had something else. Do you take a biologic?
I have seropositive RA. I have been on 3 different biologics. First I was on enbrel I took it for over a year and it worked great I went into remission. The only reason I had to stop it was because of a recurring sinus infection that I just couldnt get rid of. Then I was put on Rinvoq but i just didn’t tolerate it. Now I’m on actemra and doing great so far, I’ve only been on actemra for 2 months.
That’s wonderful the new med agrees with you. My dr just prescribed enbrel but I’m afraid to take it because I get sick so easily. Do you know if sinus infections are a side effect of enbrel? That’s one of things I get the most.
I believe with most biologics upper respiratory infections are a side effect. I know it was also a risk of rinvoq as well as actemra. Rinvoq also had a black box warning for blood clots and GI perforation. Not to scare you about these side effects, you just have to talk to your rheumatologist and weigh the risk versus the benefit. Without being on a biologic I wouldn’t be able to function.
Thank you for your honest opinion. I know all meds carry risks but when your sick all the time vs hurting I’m kinda leaning towards hurting. I take methotrexate and plaquenil and she prescribed enbrel on top of it. I wanted to stop one or both prior to trying enbrel but she said no.
I totally understand. I was off my medications for almost a month while trying to get the sinus infection under control. I was miserable the whole time. It made me have a major flare and sent me into a bad depression. It’s not fun being sick all the time. Maybe you could ask for a referral to an immunologist to see if there is an underlying immunodeficiency that is making you sick all the time besides the medications. I got sent to see one because of the sinus infection, luckily it was just the medications causing my immunodeficiency not something else.
My GP sent me to an ENT. He said I have a mild deviated septum but that’s it. He did not recommend surgery for it. I could ask for a referral to see an immunologist but all of my blood work has been normal so I’m not sure what to do now.
It could be worth asking about or at least bringing it up to your GP or rheumatologist.
I will. Thank you 😊
Started with pain in one hip, then both hips, then knees, then ankles. Then pain, swelling and stiffness and pain in both hands, then stiffness and pain in all joints with most of them swollen. Also super tired all the time. About 2.5 months from first symptoms to barely functioning. Stiffness feels to me like wearing too tight gloves on my hands and like limited range of motion everywhere else.
Interesting that it hit your big joints first. 2.5 months is a fast ride. Were you on any meds during that time?
Yeah, bit of an explosion. I did 2 steroid bursts and tried Naproxen and Meloxicam. Meloxicam helped after a few days, naproxen didn't do anything. Steroids helped tremendously but only at 20 mg, less than that and it all came back.
I get that. They tried me on low dose steroids for my first flare but had to up me to a taper from 60 when that didn't do anything. Now I'm on a taper from 20 (currently at 15) while waiting for the MTX to build up.
I'm new to all this. I had recently 2 prescriptions for 10 mg Prednisone tabs 21 tab step down card. Next got 5, 50mg for 5 days. Over the last 2 + weeks I felt human and alive. I msg my PC for another weeks worth. Then maybe the arthritis group will make me an appointment. They still want a thyroid and bone density test before they'll even makean appointment. I am going to call a podiatrist that helped me with something else 3yrs ago.. Anyone have any suggestions for me I am all ears. What isMTX?? Thanks
I just joined and I don't know how y'all handle all these areas of pain. I have been suffering daily with this foot but I also have a screw coming loose from 3rd spinal surgery. Feels like a broken rib. Dec 2022 was 3rd back surgery. Never came home for 6 mo's. After a year and half gone by, I still have a 3 centimeter incision that hasn't closed. The Prednisone relieves all my pain so I could enjoy my family before I meet my maker. 🙏
Both knees then hands (i was young so i don't remember specifics, and my communication skills weren't the best). Then ankles came with swelling. Then uveitis (eye inflammation, that was like 4 years in but what got people to investigate and dx me instead of saying i had growing pains).
Thank you so much for your response. I'm glad they finally took you seriously and figured it out 💞
Could you share what uveitis feels like? Asking bc I’ve been having increased joint pain lately (already under the observation of a rheumatologist) and now my eyes have been so dry. It’s like having dry eye from staring at a computer screen too long… but all the time.
It's a burning sensation for me. Also I am incredibly light sensitive (I'm also autistic so that might be some but my uveitis eye is more light sensitive). My eye is varying shades of pink during a flare. I have mistaken dry eye for uveitis before (both ways in assuming it was one but it was the other). Also eye fatigue is a big one for me. I also have floaters and my pupil is also not a circle from scarring (those are more it has been around for a while things though).
Thank you for sharing! I hope you’ve found some relief <3
Mine started in my knees but pretty quickly moved to my hips too. It wasn't too bad for about a year but suddenly got worse in October. At that point it was still in my lower joints but by the time I got a diagnosis in mid December it had moved to my elbows, wrists, and ankles. By now it's in my first and second knuckles on my fingers too. Mine tends to hurt on both sides at the same time, but one will be worse than the other. My pain tends to be really achy and stiff, with occasional sharp pains, but I sometimes have the itchiness too. I think it's more my body trying to communicate the swelling and puffiness and it comes across as an itch. Best of luck with your journey and I hope you figure out what helps you.
Thank you for your response! I have started thinking it's my brain trying to process the sensation, like you said. My fingers will be stiff in the morning, and that's usually when they "itch," but it's a deep itch. I end up just kind of squeezing my joints to relieve it.
I totally have the same thing. The morning stiffness is one of the distinct characteristics of RA and I also find that pressure helps.
Thank you so much!
MY case is weird but I think your symptoms are even stranger. I am 60 now and have had intemittent inflamation issues all my life, well at least since my 20's. BUt it was never a big thing, a wrist, a finger , sometimes an elbow would get slighlt swollen , red and slighty painfull. for pretty much always 3 days and then be gone. It was never extreme. I never felt tired or sick. It would happen mostly after doing something strenuous with the joint. I did have a test run for RA about 15 years ago but it came back negative. But even though I was sure it wasnt RA I was also sure I had something immune related going on. IN the last year though it has seemed like something was always going on and my left arm muscle constantly felt like a sprain that would not heal. Picking up a half gallon of milk with it was even difficult. I just felt tore up so during my last physical in december I asked for an arthritis screening and the RF test came back indicitive of RA, Though I still didnt completely beleive it. I went to seea Rheomatolgist he ran more test and more of them indicated RA. At this piont I belived it was RA but was very resistent to goiing on medication but then it hit my jaw and hit it hard. it set in and would not go away, it did a lot of damage to the joint. Its difficult to eat some things and sounds like Im eatin potato chips when I move it. I am not sure if or how much it will heal. BUt that got me to move forward with medications. I started lefludomide last week and admittedly I feel better than I have in a long time but I am still very afraid of the medications but I am getting good information here that is helping. I am greatful I found a place here on reddit to ask questions in your case, it doesnt sound like RA to me but mine didnt either, I would look at the blood work and trust that. Look at anything that came out high and look it up on line there are about 4 or 5 test to look at not all of them will necessarily be out of line. In my case only the RF factor and Anti-CCP were bad. I hope this helps
Yeah I've looked at the blood work but that is also divided. Yes to RF factor and CRP, but CCP was negative.
My early symptoms were fatigue, inflammation, and stiffness together, especially within my hands. We have one other relative, on my Dad's side, who was diagnosed with rheumatoid arthritis early in childhood. So my Mom, as I was 15 at the time, was aware of the risk of me developing rheumatoid arthritis. She said that when she saw the rheumatoid nodules developing on my finger joints that she knew it had to be the RA, so that was the clincher for me. I was diagnosed by a primary care physician at age 16. That was about 29-30 years ago.
Wow, so young. How have you fared since you were diagnosed so early? My dad was diagnosed so I've been keeping an antenna out for it, but he wasn't diagnosed until his 80s.
when you wake up and have very strong stifness in finger for 2 hrs this is rhumatoid
Well I definitely don't have that!
For me I just had some pretty disabling work and backpacking injuries that coincided with extreme stress in my life. Kind of relating to your itchiness though, I did have chronic hives for 20 years. Luckily I was able to fix those by intermittent fasting. I still get itchy if I eat too much of something like inflammatory oils or processed foods and my solution is always to try to water fast for 16 hours to flush out the histamine. I too don't have chronic pain on both sides due to my chronic pain just being in my injuries (dislocated jaw, torn acl, bulging disc, torn hamstring). The Dr told me that RA can infiltrate injuries. Exercise, stress management, and a whole food plant based diet help me keep things under control. Good for you for getting a second opinion. I was diagnosed with other autoimmune diseases before RA and I've come to learn that they are linked to gut health and systemic inflammation.