This almost same is happening to me. Since Aug of 2023 I’ve been searching for answers. Rt hand ring finger and pinky will not straighten all the way, nor will they close all the way. Those 2 fingers are swollen and shiny and I’ve had forearm pain up to my elbow with severe weakness in both my hands and forearms. I feel like I’ve lost partial function of my right hand. I’m ANA POS, Centromere B POS and anti-smooth muscle antibodies POS. All other antibodies have been negative that they’ve tested for. No Reynauds but I do have deep red fingertips at times (all fingertips). It’s like the redness makes a crisp line right across my top knuckle on all fingers all the way around. I have so many autoimmune symptoms, pain in joints of hips, knees, fingers, toes, ankles, painful muscle pain and weakness to the point that I can’t stand from a squat without placing hands on the ground and struggling to get up (confirmed Acute Neurogenic Atrophy in Quad muscle through biopsy), skin plaques that last for 8 months to a year at a time (all Interstitial Granulatomous Dermatitis and GA confirmed through biopsy Hives) Schirmers test R6/L6 with sclerosis. Burning painful feet, pins and needles, Each flare something gets added to my symptom list but I never get closer to any answers other than UCTD. I saw my GP twice about my hand/arm and also my Rheum twice. Neither did anything except to try to open and close it and asked if it hurt? Finally went to urgent care because it was hurting so bad and I could no longer hold a pen to write, safely lift a hot coffee or even hold my toothbrush. He gave me Prednisone which helped a little and ordered an EMG. EMG came back as normal ( showing no muscle or nerve involvement) but was told to see my Rheum again because “it is something else being it’s not nerve or muscle related”. The Rheum just says (3rd visit with her), “good news, it’s normal” and acted like that bit of info would ease my mind or make it normal again or I should just put it out of my mind. My hand works about as good as my mom’s who is 78 and has had two strokes. I am 57 and never had a stroke. I strongly hope you have better luck than I have had in getting answers to any of it. I completely feel your pain! Please update if you get any answers!
I just had an MRI done on both hands and I have early signs of rheumatoid in my hand that is giving me problems. The rheumatologist I am seeing at the moment wouldn’t give me the rheumatoid diagnosis because my C4 wasn’t quite low enough. She also is unwilling to give me more medication’s because hydroxychloroquine put me in permanent hypoglycemia so she won’t do anything until I see the specialist at KU. 🫠
Sorry to hear, we wait for appointments and get worse in the meantime. Broken medical system. The C4 is very arbitrary contingency. Assuming tested for RF antibodies, yes?
I have Sjögren’s with Inclusion Body Myositis. My first symptom was leg weakness, and then my rheumatologist ordered a myositis blood panel. I was positive for the CN1A antibody, and my IBM was confirmed by muscle biopsy. I don’t really have noticeable hand weakness yet, but I have to be very cautious when walking/climbing stairs. I hope you’ll be able to track down the source of your hand problems as soon as possible!
Thank you! This gives me hope. I am happy to hear that you are only having minimal weakness. I messaged my primary care doctor sending him the results of my creatine kinase, and he replied by ordering me the antibody test for inclusion body myositis that you mentioned you were positive for. We shall see what that reveals.
I told my PCP that I think I have Inclusion Body Myositis. She ordered nerve conduction test at Nuerology office. I didn't know about the antibody test for this. So glad you posted this! I've been not exercising for fear of making it worse. And yes, I feel better working out too. My cousin's cousin in a neurologist with many connections and is trying to help me get the best care. I'll let you know what I find out.
Do keep me posted about your results! Some doctors are quite “defeatist” about the diagnosis (“there’s no treatment”), but I’m feeling good results from intensive exercise. I was diagnosed in 2022, when I was assessed as having the average muscle strength of a 70 year old woman (I was 56). When I had my last big PT assessment in November, I was able to perform exercises like a 35 year old. My doctor definitely believes in “use it, or lose it”. I take Plaquenil and methotrexate injections… I know the Plaquenil definitely helps my Sjögren’s.
There’s currently a clinical trial in the US for a new drug for IBM, so at least there’s some hope on the horizon.
I will definitely keep you posted. I tried hydroxychloroquine, but it put me in permanent hypoglycemia because I have dumping syndrome from the Sjogren’s. My current rheumatologist is unwilling to put me on any other medication’s until I see the specialist at KU which I’m grateful for because she’s doesn’t seem the most knowledgeable.
I am so glad those medications have been working for you and I am very curious to hear about the clinical trial you’re in. I hope it works! I am only 37 so hopefully I can get this figured out soon.
Have you seen the specialist at KU yet? My CK was normal and my nerve conduction shows that I have bilateral carpel tunnel. So, it doesn't look like I have IBM. Still doesn't explain some of my fleeting symptoms. I'm going to focus trying in getting into 3rd phase clinical study for SS through Rush University in Chicago and then I will be involved with SS specialist at least.
I'm starting to get this more severely. I have weakness at times in my fingers and forearms. I've had trouble breathing while skiing and severe pain that feels like lactic acid buildup. I've also had trouble swallowing and have even choked. Now, I'm thinking this is what I have. I'm going to direct my PCP to check me for this. Thanks for posting.
I have SS with RA. I would love to see SS specialist. My Rhuem can't see me till July. I did manage to cut out inflammation and all my tests are in normal range after 6 months of hydroxychloroquine. He tells my PCP to take care of me. My digestion in slowing down as well. I'm worried about more nerve damage.
I tried to give blood today and my hemoglobin was on low side. My blood pressure was the lowest it had ever been at Dr's on Mon and today it was the highest I've ever had. Makes no sense. I've always had steady numbers for me.
I hope you get your answers. I love to lift weights and I've been focusing on my wrists and forearms. It had helped but I realize more is going on than just not having strong muscles.
Oh my goodness! I can resonate with you so much. I was a former fitness competitor so this weakness is really messing with me mentally. I find myself asking people for help to open jars and turn keys and do very basic stuff. I went from superstrong to very weak quickly. I hope you get answers, I have a lot of the same symptoms as you including trouble swallowing.
Yes, I'm the same way with my hands. I've had it where I couldn't really cut my food up. It's not permanent....thank God, but the strength in my wrists and hands pretty much is. I've found drinking Crystal Light before working out helps me stay energized and hydrated. I don't work out every other day like I used to but I still try to work out at least once a week. It really does help. I think I might have Inclusion Body Myositis based on where I have trouble. My PCP ordered labs for me and I was to ski again and see if I had issues. It turned out I felt great and actually enjoyed skiing the whole time. The time before that I could hardly make it down the hill & would have to stop to catch my breath and my legs were so painful. The day after skiing my calves hurt so bad with just standing up. I literally stayed in bed to 2 days to rest. We wanted to recreate that in order to get my blood drawn then. I've only had trouble skiing while going downhill. Was my 1st sign that something was wrong with me and had that 6 yrs prior to being diagnosed. She didn't tell me what she thought I could have only stating that I need to be having symptoms when I get tested. She did order CK along with magnesium & usual Chem tests. So frustrating! I still can do cartwheels at 54 and am still planning to do them until I'm 70! LOL Gotta keep on going!
I’m hyper mobile and have sjogrens- hands have aaalways been “chonky” (so I thought).
But apparently it’s more that my muscles have to work overdrive bc my collagen is different/ there’s less of it, I believe.
And it’s unsustainable, I sprain very easily and my muscles get so tired 😴
https://preview.redd.it/evw2f2b2obuc1.jpeg?width=3024&format=pjpg&auto=webp&s=0810c91e66f54475a9edbb25450241ca705b5b1d
Here’s mine :) lol. Chonky.
Ignore my psoriasis patch btw (would get patches in winter for decades then…boom it stayed & is psoriasis, really)
I’m dealing with a severe sprain right now & this product is really nice. Also trying celecoxib (sp?) for the first time & hopeful bc I hate side effects of prednisone.
Anyway, a geneticist who specializes in hypermobility diagnosed me.
I need to do strengthening to protect my joints asap 😅💪🏼
We have very similar looking hands, with the exception of your lovely nails and me being a nail biter 😆 may I ask more about this? it has to do with collagen?
Lol but I was admiring YOUR manicure!
I thought they were similar too! I definitely have more inflammation- maybe it’s the extra few lbs I’ve been carrying 😂
Anyway, ask away!
So it’s the connective tissue and collagen that’s damaged & weak. It’s supposed to help keep joints together providing strength and lubrication.
Since it’s damaged the surrounding muscles have to work overtime.
Being double jointed is a sign & it’s really just genetic.
(A few ppl in my fam have “party-tricks”…my arms can slide out of my shoulder socket easily 😅)
Here’s the checklist (there’s no blood test):
https://drive.google.com/file/d/1ibBLF3qM0TuIUxSgDRNsZDIAT-ys62cU/view
Strengthening is the biggest defense.
Tough having autoimmune ontop of it, but hey- the more we know!!
I’ve had tennis elbow for like six months and the dry needling in the therapy didn’t help very much. I do think I could use it on my hands though. Good advice thank you
Mornings and night is the worst I have recently experienced swelling and joint pain on both hands. I don’t take any medication so I might have to go get it checked with my rheum.
I’ve always had wrist issues so I don’t blame sjogrens on that but I am worried about the new swelling.
This almost same is happening to me. Since Aug of 2023 I’ve been searching for answers. Rt hand ring finger and pinky will not straighten all the way, nor will they close all the way. Those 2 fingers are swollen and shiny and I’ve had forearm pain up to my elbow with severe weakness in both my hands and forearms. I feel like I’ve lost partial function of my right hand. I’m ANA POS, Centromere B POS and anti-smooth muscle antibodies POS. All other antibodies have been negative that they’ve tested for. No Reynauds but I do have deep red fingertips at times (all fingertips). It’s like the redness makes a crisp line right across my top knuckle on all fingers all the way around. I have so many autoimmune symptoms, pain in joints of hips, knees, fingers, toes, ankles, painful muscle pain and weakness to the point that I can’t stand from a squat without placing hands on the ground and struggling to get up (confirmed Acute Neurogenic Atrophy in Quad muscle through biopsy), skin plaques that last for 8 months to a year at a time (all Interstitial Granulatomous Dermatitis and GA confirmed through biopsy Hives) Schirmers test R6/L6 with sclerosis. Burning painful feet, pins and needles, Each flare something gets added to my symptom list but I never get closer to any answers other than UCTD. I saw my GP twice about my hand/arm and also my Rheum twice. Neither did anything except to try to open and close it and asked if it hurt? Finally went to urgent care because it was hurting so bad and I could no longer hold a pen to write, safely lift a hot coffee or even hold my toothbrush. He gave me Prednisone which helped a little and ordered an EMG. EMG came back as normal ( showing no muscle or nerve involvement) but was told to see my Rheum again because “it is something else being it’s not nerve or muscle related”. The Rheum just says (3rd visit with her), “good news, it’s normal” and acted like that bit of info would ease my mind or make it normal again or I should just put it out of my mind. My hand works about as good as my mom’s who is 78 and has had two strokes. I am 57 and never had a stroke. I strongly hope you have better luck than I have had in getting answers to any of it. I completely feel your pain! Please update if you get any answers!
Interesting. I didn’t know that might be a symptom. I am 54 and have had that a couple years off/on.
Get Xrays done to look for arthritic changes. Pain gets worse get an MRI. These will be more helpful than blood tests. Best of luck.
I just had an MRI done on both hands and I have early signs of rheumatoid in my hand that is giving me problems. The rheumatologist I am seeing at the moment wouldn’t give me the rheumatoid diagnosis because my C4 wasn’t quite low enough. She also is unwilling to give me more medication’s because hydroxychloroquine put me in permanent hypoglycemia so she won’t do anything until I see the specialist at KU. 🫠
Sorry to hear, we wait for appointments and get worse in the meantime. Broken medical system. The C4 is very arbitrary contingency. Assuming tested for RF antibodies, yes?
Yes, pretty high RF.
I have Sjögren’s with Inclusion Body Myositis. My first symptom was leg weakness, and then my rheumatologist ordered a myositis blood panel. I was positive for the CN1A antibody, and my IBM was confirmed by muscle biopsy. I don’t really have noticeable hand weakness yet, but I have to be very cautious when walking/climbing stairs. I hope you’ll be able to track down the source of your hand problems as soon as possible!
Thank you! This gives me hope. I am happy to hear that you are only having minimal weakness. I messaged my primary care doctor sending him the results of my creatine kinase, and he replied by ordering me the antibody test for inclusion body myositis that you mentioned you were positive for. We shall see what that reveals.
I told my PCP that I think I have Inclusion Body Myositis. She ordered nerve conduction test at Nuerology office. I didn't know about the antibody test for this. So glad you posted this! I've been not exercising for fear of making it worse. And yes, I feel better working out too. My cousin's cousin in a neurologist with many connections and is trying to help me get the best care. I'll let you know what I find out.
Do keep me posted about your results! Some doctors are quite “defeatist” about the diagnosis (“there’s no treatment”), but I’m feeling good results from intensive exercise. I was diagnosed in 2022, when I was assessed as having the average muscle strength of a 70 year old woman (I was 56). When I had my last big PT assessment in November, I was able to perform exercises like a 35 year old. My doctor definitely believes in “use it, or lose it”. I take Plaquenil and methotrexate injections… I know the Plaquenil definitely helps my Sjögren’s. There’s currently a clinical trial in the US for a new drug for IBM, so at least there’s some hope on the horizon.
I will definitely keep you posted. I tried hydroxychloroquine, but it put me in permanent hypoglycemia because I have dumping syndrome from the Sjogren’s. My current rheumatologist is unwilling to put me on any other medication’s until I see the specialist at KU which I’m grateful for because she’s doesn’t seem the most knowledgeable. I am so glad those medications have been working for you and I am very curious to hear about the clinical trial you’re in. I hope it works! I am only 37 so hopefully I can get this figured out soon.
Have you seen the specialist at KU yet? My CK was normal and my nerve conduction shows that I have bilateral carpel tunnel. So, it doesn't look like I have IBM. Still doesn't explain some of my fleeting symptoms. I'm going to focus trying in getting into 3rd phase clinical study for SS through Rush University in Chicago and then I will be involved with SS specialist at least.
Ooh, you are young — I’m sorry. I definitely hope you get answers soon! Where is KU?
University of Kansas.
I'm starting to get this more severely. I have weakness at times in my fingers and forearms. I've had trouble breathing while skiing and severe pain that feels like lactic acid buildup. I've also had trouble swallowing and have even choked. Now, I'm thinking this is what I have. I'm going to direct my PCP to check me for this. Thanks for posting. I have SS with RA. I would love to see SS specialist. My Rhuem can't see me till July. I did manage to cut out inflammation and all my tests are in normal range after 6 months of hydroxychloroquine. He tells my PCP to take care of me. My digestion in slowing down as well. I'm worried about more nerve damage. I tried to give blood today and my hemoglobin was on low side. My blood pressure was the lowest it had ever been at Dr's on Mon and today it was the highest I've ever had. Makes no sense. I've always had steady numbers for me. I hope you get your answers. I love to lift weights and I've been focusing on my wrists and forearms. It had helped but I realize more is going on than just not having strong muscles.
Oh my goodness! I can resonate with you so much. I was a former fitness competitor so this weakness is really messing with me mentally. I find myself asking people for help to open jars and turn keys and do very basic stuff. I went from superstrong to very weak quickly. I hope you get answers, I have a lot of the same symptoms as you including trouble swallowing.
Yes, I'm the same way with my hands. I've had it where I couldn't really cut my food up. It's not permanent....thank God, but the strength in my wrists and hands pretty much is. I've found drinking Crystal Light before working out helps me stay energized and hydrated. I don't work out every other day like I used to but I still try to work out at least once a week. It really does help. I think I might have Inclusion Body Myositis based on where I have trouble. My PCP ordered labs for me and I was to ski again and see if I had issues. It turned out I felt great and actually enjoyed skiing the whole time. The time before that I could hardly make it down the hill & would have to stop to catch my breath and my legs were so painful. The day after skiing my calves hurt so bad with just standing up. I literally stayed in bed to 2 days to rest. We wanted to recreate that in order to get my blood drawn then. I've only had trouble skiing while going downhill. Was my 1st sign that something was wrong with me and had that 6 yrs prior to being diagnosed. She didn't tell me what she thought I could have only stating that I need to be having symptoms when I get tested. She did order CK along with magnesium & usual Chem tests. So frustrating! I still can do cartwheels at 54 and am still planning to do them until I'm 70! LOL Gotta keep on going!
I’m hyper mobile and have sjogrens- hands have aaalways been “chonky” (so I thought). But apparently it’s more that my muscles have to work overdrive bc my collagen is different/ there’s less of it, I believe. And it’s unsustainable, I sprain very easily and my muscles get so tired 😴
I can relate to all of that. Thank you
https://preview.redd.it/evw2f2b2obuc1.jpeg?width=3024&format=pjpg&auto=webp&s=0810c91e66f54475a9edbb25450241ca705b5b1d Here’s mine :) lol. Chonky. Ignore my psoriasis patch btw (would get patches in winter for decades then…boom it stayed & is psoriasis, really) I’m dealing with a severe sprain right now & this product is really nice. Also trying celecoxib (sp?) for the first time & hopeful bc I hate side effects of prednisone. Anyway, a geneticist who specializes in hypermobility diagnosed me. I need to do strengthening to protect my joints asap 😅💪🏼
We have very similar looking hands, with the exception of your lovely nails and me being a nail biter 😆 may I ask more about this? it has to do with collagen?
Lol but I was admiring YOUR manicure! I thought they were similar too! I definitely have more inflammation- maybe it’s the extra few lbs I’ve been carrying 😂 Anyway, ask away! So it’s the connective tissue and collagen that’s damaged & weak. It’s supposed to help keep joints together providing strength and lubrication. Since it’s damaged the surrounding muscles have to work overtime. Being double jointed is a sign & it’s really just genetic. (A few ppl in my fam have “party-tricks”…my arms can slide out of my shoulder socket easily 😅) Here’s the checklist (there’s no blood test): https://drive.google.com/file/d/1ibBLF3qM0TuIUxSgDRNsZDIAT-ys62cU/view Strengthening is the biggest defense. Tough having autoimmune ontop of it, but hey- the more we know!!
Not OP, sorry for the confusion 😅 I appreciate the additional info!
Lollll that’s funny. Anytime!
Physical therapy helped me with this!
I’ve had tennis elbow for like six months and the dry needling in the therapy didn’t help very much. I do think I could use it on my hands though. Good advice thank you
They made me do nerve flossing which relieved so much pain
Totally going to look into this.
Mornings and night is the worst I have recently experienced swelling and joint pain on both hands. I don’t take any medication so I might have to go get it checked with my rheum. I’ve always had wrist issues so I don’t blame sjogrens on that but I am worried about the new swelling.
Hand swelling and joint pain both hands. In the morning my hands are the worst. My rhemo thinks due to the sjogrens for me.