I just found out I have myositis and I am freaking out! My doctor informed via MyChart so I asked for a teledoc appt. Any information you have is greatly appreciated. I have Sjogren’s Syndrome and I have been getting rash for five years. My leg muscles and top army muscles are always sore and I have trouble walking.
I am a white female and I just turned 70. On the outside I look very healthy but I feel terrible all of the time. My primary doctor told me I look really good for my age. LOL
2
Pamela Wright on
October 5, 2021
Your story sounds familiar to me except I was on dialysis for 5 years and thought the weakness was from that. My left arm and hand are weaker than the right. This April, my legs gave out while using a walker and my body doubled back on itself. I fractured a bone in my ankle but all better now. No muscle strength in my thighs. Tried IVIG for 2 days, developed a fever and stopped that.
3
Hilary on
December 14, 2021
Oh my word this is like an echo of my story 😔😔 I believe I had had it al my life but about 4 years ago the strange symptoms began. My normal exercise routine would absolutely ruin me and simple tasks became huge challenges. I couldn’t brush my hair or climb the stairs. I would have flare ups of immense fatigue but I didn’t know what the flare up was. I am currently under testing for a full diagnosis. A time of very mixed emotions
4
Bernadette Garvin on
January 2, 2022
Thank you for sharing your story as it really helped me , just several weeks ago I was given the diagnosis . Actually I been having symptoms for several years .
5
ARLENE JOYCE Korte on
January 29, 2022
I WAS DIAGNOSISED 2000 WITH IBM. I WAS TOLD THAT I WOULD BE IN A WHEELCHAIR IN 10
YEARS BUT I DIDN’T GIVE UP TO THAT PREDICTION. I WALKED WITH A WALKER FOR 19 YEARS. I ATTRIBUTE THAT BECAUSE I BEGAN AN EXERCISE PROGRAM UPON LEARNING
ABOUT MY DISEASE. I NOW HAVE AN ELECTRIC WHEELCHAIR THAT ALSO WILL RISE.
MY LATEST PROBLEMS ARE MY WEAK HANDS AND SWALLOWING.
6
Diana Lee Meehan on
February 20, 2022
I was just flabbergasted by Lisa’s story. It is my testimony, down to the hairspray. I am a 55 year old women who has experienced symptoms for 4 years prior to a pre-diagnosis. My doctor pre-diagnosed me with IBM in August of 2021. I have every symptom, other than the difficulty with swallowing. I am in the process of scheduling a muscle biopsi. I have pool PT twice a week. I live in Eastern MT so this strange disorder is even stranger 😄. I would appreciate a support group or information on what I can expect. I have so many questions. Like, is it normal to have good days when I feel stronger and then the following days go back to the weaknesses and fatigue? Does an anti-inflammatory diet help? Any help or information would be so appreciated.
7
Ellen Malamas on
March 17, 2022
Lisa you are an amazing lady and your attitude is so positive that it gives me hope. My dad was recently diagnosed and I am so devastated I don’t know what to do! Thank you for sharing your story. By the way, you are beautiful!❤
8
Charles h gordon sr on
April 28, 2022
Interested in learning more about IBM from people Who are dealing with IBM. I have been diagnosed for about two years. Thank you
9
Linda M Puckett on
May 29, 2022
I have IBM and I m 61 and I stopped walking last year and also had lung Cancer. ANY help and reading material would be appreciated.
10
Deborah Blevins on
May 30, 2022
My husband’s cousin was diagnosed with Myositis in 2020. He was unable to pull himself into his semi as he had in the past. He is white male mid-60’s. He has described a lot of the same challenges that you have or are going through. Like you, he has a great attitude. I have my own auto immune disease that I’m dealing with, Sjögrens so I understand what it’s like to have to live with an autoimmune that most people have not heard of and one that is poorly researched.
My thoughts and prayers are with you and those suffering from this disease!
11
Kelley Chalker on
June 5, 2022
I have positive ana…suspecting myositis…attempting to educate myself
12
Patricia Batker on
October 26, 2022
My mother had this disease and at 65 I am experiencing similar symptoms.
13
Lynn Pierpoint-Mallet on
November 15, 2022
Thank you for sharing. Your story mirrors mine in so many ways. I was diagnosed in 2019 at age 54. I’m still working but planning my exit in Apr 2023 so I can move more often throughout the day vs. sitting. I still move between stages of denial, anger, depression – I can’t say I’ve accepted it yet. I have my days – it’s not fair. But I am trying. I have a good team of doctors but know there is no cure and I sometimes think – why bother? I feel such a sense of urgency in getting things done since I don’t know how much longer I have with quality of life. When that quality goes, I really do fear what my life will look like. I’m working hard at staying positive for now. Definitely not what my husband and I thought retirement would look like.
14
Bernadette Bothe on
January 29, 2023
We live in Alberta Canada 🍁 and my cousin white male 71 years old became very ill and was admitted to the hospital Jan 2023. After the tests, he has been diagnosed with Immune Mediating Necrotizing Myopathy. They are doing a muscle biopsy as we speak to determine for sure the diagnoses. As you can imagine we are all in a state of disbelief, especially his wife and children.
You are upbeat and I am in awe of your strength and positivity and hope we get there also.
In the meantime do you have any suggestions for this life-changing condition?
Thank you
15
Connie on
March 1, 2023
My son who has Down Syndrome also autistic has Myositis as well as Antisynthetase syndrome and other interesting conditions.
He is also non verbal….does use sign language, says a few word….very few…so understanding what he’s going through is difficult.
Just stumbled on these videos which will help me immensely understand just What is going on!…..huge blessing for me. We want to help him, which we’ve done with meds, etc., but knowing just what he’s feeling is major.
Wow…….Thank you!
16
Kaaren Beuth on
April 13, 2023
I just wrote a message but not sure if it was sent..my details are
Below. I’d love to keep in contact with you Lisa..to share our journey.
Sometimes it’s very lonely. I was #30diagnosed with IBM in NZ in 2014. I think there are 300 at least now as the disease becomes more diagnosed.
Take care
17
Michelle D Gravatt on
April 28, 2023
I was diagnosed 2years ago with polymyositis along with mixed connective disease and sjogrens. What a challenge this has been.
Started on methotrexate which has helped some. Problems with swallowing, very fatigued, in a flare up, I cant walk up stairs or even a curb, and unable to get up out of a chair. God forbid I fall, I’m like a beached whale. Amazing how others (even my own kids) think I’m just fine and this will pass.
I’m completely on my own so I do tend to feel sorry for myself at times, then work on trying to have positive thoughts.
Nice to hear from others and their struggles,
Guess I dont feel so alone and isolated.
18
Cynthia Leedom on
October 31, 2023
Hi. I can relate to most of your story. I have been having symptoms and high CK levels. My muscles ache so bad it’s like I have done a work out but clearly hardly move some days.
I am just starting prednisone tomorrow 60mg 7 days then tapper off slowly every 7 days.
Kinda scared but more scared to not get help. Just hope it puts it to rest so I can be drug free and pain free. Pretty scared.
I am turning 69 and live alone so my mind over thinks every pain I get.
19
QB on
May 10, 2023
Thank you so much for sharing your story. IBM has primarily affected my legs and was diagnosed in my late 40’s. I lost weight and started exercising regularly and my symptoms stabilized and even improved a bit. The effects of IBM has been episodic for me but have increased lately (I am now in my late 50’s). My mobility is significantly affected. I was able to retire two years ago and am trying to frontload vacations now while I can still get around with walking sticks vs a wheelchair. It reassuring to hear of a normal weight woman with similar struggles, I blame a lot of my symptoms on weight. I’m still working to accept my evolving reality
20
Leslie haas on
May 13, 2023
Strange things were happening to me in my early 50s.2003. I was having trouble swallowing soft foods like pancakes,potatoes,bread.put up with it first then I was getting annoyed and went to the doctor. To make a long story short they dilated the problem in my throat and I was much better for about a year. They had no idea what caused it . They said it’s pretty common when you get older. I had three dialations after the first. Months, years, go by, and I would periodically take a fall here and there and they were traumatic. I hurt myself. I’m thinking, “I’m not paying attention or I’m getting clumsy,but when my knees started collapsing on me, I kind of started thinking something else is going on, what if it’s MS.the whole process was very slow .mind you, I was very active with projects I did ,working with drift wood and jewelry making and working in my little hair salon. I’ve always been strong and fit and I did notice my quads were shrinking(must have been slow too)Got an appointment with a neurologist who didn’t have a clue set me up with a neurosurgeon for a nerve and muscle biopsy. Diagnosed IBM.2014.Up until 2020 my weakness was pretty much in the legs but gradually my arms seem to be getting weaker much faster.unable to apply lotion(can’t get my hands flat.) wash my hair, pick up anything and raise it up above my head, I can still use my hands but getting harder to write
21
Kevin Guest on
June 18, 2023
Hi Leslie,
I have exactly the same problems as you . I am in the why me stage and have a lot of fear, how long has your IBM taken to get you to where you are now, as this worries me as my dysphasia has started in my throat, and they seem to be worried about my head as I have had a few falls that caused head injuries, and I do have a brain fog. I also had 2 falls that caused a broken femur, then I did it again and broke the same femur as well as my knee needed replacing, thus I can’t walk properly, as well as the muscle wasting. If you could give me some idea of how long I’ve got?
Many thanks,
Kevin Guest
22
Susan Gardner on
September 11, 2023
Leslie and Kevin,
Reading your stories is exactly what I have been going through. I was finally diagnosed this past July with Polymyositis. As I go back and think about the symptoms and signs, I have been having them for years. I started having a lot of lower back pain, to the point of not being able to walk or stand, last fall. Doctor sent me to physical therapy, which only made it worse. By June of this year I could barely walk, climb stairs, or stand. Dizziness to the point of falling and eventually passing out. Last passing out I fell and hit my fireplace and had to get 16 stiches in my arm. I was very lucky that it was not my head. Even now after being on steroids, if I fall, I cannot get myself up. I am getting some of my strength back due to the steroids, but what is going to happen when I come off of them? I cannot stay on them forever. They have me on high dose of steroids and other medications as well. I have had my throat dilated 3 times, and I will not have it done again, even with my difficulty swallowing. I am trying so hard to keep a positive attitude, but there are days when I struggle. If someone can give me an idea on what to expect. I know that the only thing I can hope for is to go into remission, but I am not finding many people going into remission. That being said, I have the same question Keving has, how long do I have?
Thanks for any and all information you can provide.
Susan Gardner
23
lbroyden on
March 20, 2024
My daughter was diagnosed with this at age 19. She is now 22. We were hoping that it was maybe the juvenile form and it could be managed, and she could have her life back. However, it does not seem to be responding to even the biggest medications and we have her managed by specialists at Duke University.
Does anyone have any information about the juvenile form? At this age it seems more likely, but again no one knows.
24
Linda Kobert on
March 20, 2024
Juvenile myositis (JM) is considered its own form of myositis, even for those in adulthood. Duke Children’s Hospital has one of the best myositis centers of excellence for JM. Dr. Anne Reed runs the center, is a former TMA medical advisor, and is very knowledgeable. She also has a program for transitioning children with myositis from pediatric to adult care. You might ask to consult with her or her team to find the best care for your daughter. https://www.curejm.org/centers-of-excellence/
25
lbroyden on
March 20, 2024
Thank you Linda . They did a gigantic blood test to determine subtype, and even sent it off to Johns Hopkins, but it came back “inconclusive”. They have never been able to determine juvenile versus adult, but her age would seem that way she would be more on the juvenile end .. that seemed a little more hopeful anyway. However no one has said either way. I don’t think anyone knows. Any other other ideas and how we could figure it out? It seems that if we knew exactly what it was, that would help treat it.. She was only 19, she is 22 at the time, but this thing is aggressive and relentless. Of course I want to leave no stone unturned, at this very point, things are very rough for her. All input is good input.
I will follow your leads on the lady at Duke. We were just there, and worked with a Dr. Anderson, but no other options were offered. It’s just too far for us to drive. We live in Blacksburg, Virginia, which is about a 3 Hour drive .
I just found out I have myositis and I am freaking out! My doctor informed via MyChart so I asked for a teledoc appt. Any information you have is greatly appreciated. I have Sjogren’s Syndrome and I have been getting rash for five years. My leg muscles and top army muscles are always sore and I have trouble walking.
I am a white female and I just turned 70. On the outside I look very healthy but I feel terrible all of the time. My primary doctor told me I look really good for my age. LOL
Your story sounds familiar to me except I was on dialysis for 5 years and thought the weakness was from that. My left arm and hand are weaker than the right. This April, my legs gave out while using a walker and my body doubled back on itself. I fractured a bone in my ankle but all better now. No muscle strength in my thighs. Tried IVIG for 2 days, developed a fever and stopped that.
Oh my word this is like an echo of my story 😔😔 I believe I had had it al my life but about 4 years ago the strange symptoms began. My normal exercise routine would absolutely ruin me and simple tasks became huge challenges. I couldn’t brush my hair or climb the stairs. I would have flare ups of immense fatigue but I didn’t know what the flare up was. I am currently under testing for a full diagnosis. A time of very mixed emotions
Thank you for sharing your story as it really helped me , just several weeks ago I was given the diagnosis . Actually I been having symptoms for several years .
I WAS DIAGNOSISED 2000 WITH IBM. I WAS TOLD THAT I WOULD BE IN A WHEELCHAIR IN 10
YEARS BUT I DIDN’T GIVE UP TO THAT PREDICTION. I WALKED WITH A WALKER FOR 19 YEARS. I ATTRIBUTE THAT BECAUSE I BEGAN AN EXERCISE PROGRAM UPON LEARNING
ABOUT MY DISEASE. I NOW HAVE AN ELECTRIC WHEELCHAIR THAT ALSO WILL RISE.
MY LATEST PROBLEMS ARE MY WEAK HANDS AND SWALLOWING.
I was just flabbergasted by Lisa’s story. It is my testimony, down to the hairspray. I am a 55 year old women who has experienced symptoms for 4 years prior to a pre-diagnosis. My doctor pre-diagnosed me with IBM in August of 2021. I have every symptom, other than the difficulty with swallowing. I am in the process of scheduling a muscle biopsi. I have pool PT twice a week. I live in Eastern MT so this strange disorder is even stranger 😄. I would appreciate a support group or information on what I can expect. I have so many questions. Like, is it normal to have good days when I feel stronger and then the following days go back to the weaknesses and fatigue? Does an anti-inflammatory diet help? Any help or information would be so appreciated.
Lisa you are an amazing lady and your attitude is so positive that it gives me hope. My dad was recently diagnosed and I am so devastated I don’t know what to do! Thank you for sharing your story. By the way, you are beautiful!❤
Interested in learning more about IBM from people Who are dealing with IBM. I have been diagnosed for about two years. Thank you
I have IBM and I m 61 and I stopped walking last year and also had lung Cancer. ANY help and reading material would be appreciated.
My husband’s cousin was diagnosed with Myositis in 2020. He was unable to pull himself into his semi as he had in the past. He is white male mid-60’s. He has described a lot of the same challenges that you have or are going through. Like you, he has a great attitude. I have my own auto immune disease that I’m dealing with, Sjögrens so I understand what it’s like to have to live with an autoimmune that most people have not heard of and one that is poorly researched.
My thoughts and prayers are with you and those suffering from this disease!
I have positive ana…suspecting myositis…attempting to educate myself
My mother had this disease and at 65 I am experiencing similar symptoms.
Thank you for sharing. Your story mirrors mine in so many ways. I was diagnosed in 2019 at age 54. I’m still working but planning my exit in Apr 2023 so I can move more often throughout the day vs. sitting. I still move between stages of denial, anger, depression – I can’t say I’ve accepted it yet. I have my days – it’s not fair. But I am trying. I have a good team of doctors but know there is no cure and I sometimes think – why bother? I feel such a sense of urgency in getting things done since I don’t know how much longer I have with quality of life. When that quality goes, I really do fear what my life will look like. I’m working hard at staying positive for now. Definitely not what my husband and I thought retirement would look like.
We live in Alberta Canada 🍁 and my cousin white male 71 years old became very ill and was admitted to the hospital Jan 2023. After the tests, he has been diagnosed with Immune Mediating Necrotizing Myopathy. They are doing a muscle biopsy as we speak to determine for sure the diagnoses. As you can imagine we are all in a state of disbelief, especially his wife and children.
You are upbeat and I am in awe of your strength and positivity and hope we get there also.
In the meantime do you have any suggestions for this life-changing condition?
Thank you
My son who has Down Syndrome also autistic has Myositis as well as Antisynthetase syndrome and other interesting conditions.
He is also non verbal….does use sign language, says a few word….very few…so understanding what he’s going through is difficult.
Just stumbled on these videos which will help me immensely understand just What is going on!…..huge blessing for me. We want to help him, which we’ve done with meds, etc., but knowing just what he’s feeling is major.
Wow…….Thank you!
I just wrote a message but not sure if it was sent..my details are
Below. I’d love to keep in contact with you Lisa..to share our journey.
Sometimes it’s very lonely. I was #30diagnosed with IBM in NZ in 2014. I think there are 300 at least now as the disease becomes more diagnosed.
Take care
I was diagnosed 2years ago with polymyositis along with mixed connective disease and sjogrens. What a challenge this has been.
Started on methotrexate which has helped some. Problems with swallowing, very fatigued, in a flare up, I cant walk up stairs or even a curb, and unable to get up out of a chair. God forbid I fall, I’m like a beached whale. Amazing how others (even my own kids) think I’m just fine and this will pass.
I’m completely on my own so I do tend to feel sorry for myself at times, then work on trying to have positive thoughts.
Nice to hear from others and their struggles,
Guess I dont feel so alone and isolated.
Hi. I can relate to most of your story. I have been having symptoms and high CK levels. My muscles ache so bad it’s like I have done a work out but clearly hardly move some days.
I am just starting prednisone tomorrow 60mg 7 days then tapper off slowly every 7 days.
Kinda scared but more scared to not get help. Just hope it puts it to rest so I can be drug free and pain free. Pretty scared.
I am turning 69 and live alone so my mind over thinks every pain I get.
Thank you so much for sharing your story. IBM has primarily affected my legs and was diagnosed in my late 40’s. I lost weight and started exercising regularly and my symptoms stabilized and even improved a bit. The effects of IBM has been episodic for me but have increased lately (I am now in my late 50’s). My mobility is significantly affected. I was able to retire two years ago and am trying to frontload vacations now while I can still get around with walking sticks vs a wheelchair. It reassuring to hear of a normal weight woman with similar struggles, I blame a lot of my symptoms on weight. I’m still working to accept my evolving reality
Strange things were happening to me in my early 50s.2003. I was having trouble swallowing soft foods like pancakes,potatoes,bread.put up with it first then I was getting annoyed and went to the doctor. To make a long story short they dilated the problem in my throat and I was much better for about a year. They had no idea what caused it . They said it’s pretty common when you get older. I had three dialations after the first. Months, years, go by, and I would periodically take a fall here and there and they were traumatic. I hurt myself. I’m thinking, “I’m not paying attention or I’m getting clumsy,but when my knees started collapsing on me, I kind of started thinking something else is going on, what if it’s MS.the whole process was very slow .mind you, I was very active with projects I did ,working with drift wood and jewelry making and working in my little hair salon. I’ve always been strong and fit and I did notice my quads were shrinking(must have been slow too)Got an appointment with a neurologist who didn’t have a clue set me up with a neurosurgeon for a nerve and muscle biopsy. Diagnosed IBM.2014.Up until 2020 my weakness was pretty much in the legs but gradually my arms seem to be getting weaker much faster.unable to apply lotion(can’t get my hands flat.) wash my hair, pick up anything and raise it up above my head, I can still use my hands but getting harder to write
Hi Leslie,
I have exactly the same problems as you . I am in the why me stage and have a lot of fear, how long has your IBM taken to get you to where you are now, as this worries me as my dysphasia has started in my throat, and they seem to be worried about my head as I have had a few falls that caused head injuries, and I do have a brain fog. I also had 2 falls that caused a broken femur, then I did it again and broke the same femur as well as my knee needed replacing, thus I can’t walk properly, as well as the muscle wasting. If you could give me some idea of how long I’ve got?
Many thanks,
Kevin Guest
Leslie and Kevin,
Reading your stories is exactly what I have been going through. I was finally diagnosed this past July with Polymyositis. As I go back and think about the symptoms and signs, I have been having them for years. I started having a lot of lower back pain, to the point of not being able to walk or stand, last fall. Doctor sent me to physical therapy, which only made it worse. By June of this year I could barely walk, climb stairs, or stand. Dizziness to the point of falling and eventually passing out. Last passing out I fell and hit my fireplace and had to get 16 stiches in my arm. I was very lucky that it was not my head. Even now after being on steroids, if I fall, I cannot get myself up. I am getting some of my strength back due to the steroids, but what is going to happen when I come off of them? I cannot stay on them forever. They have me on high dose of steroids and other medications as well. I have had my throat dilated 3 times, and I will not have it done again, even with my difficulty swallowing. I am trying so hard to keep a positive attitude, but there are days when I struggle. If someone can give me an idea on what to expect. I know that the only thing I can hope for is to go into remission, but I am not finding many people going into remission. That being said, I have the same question Keving has, how long do I have?
Thanks for any and all information you can provide.
Susan Gardner
My daughter was diagnosed with this at age 19. She is now 22. We were hoping that it was maybe the juvenile form and it could be managed, and she could have her life back. However, it does not seem to be responding to even the biggest medications and we have her managed by specialists at Duke University.
Does anyone have any information about the juvenile form? At this age it seems more likely, but again no one knows.
Juvenile myositis (JM) is considered its own form of myositis, even for those in adulthood. Duke Children’s Hospital has one of the best myositis centers of excellence for JM. Dr. Anne Reed runs the center, is a former TMA medical advisor, and is very knowledgeable. She also has a program for transitioning children with myositis from pediatric to adult care. You might ask to consult with her or her team to find the best care for your daughter.
https://www.curejm.org/centers-of-excellence/
Thank you Linda . They did a gigantic blood test to determine subtype, and even sent it off to Johns Hopkins, but it came back “inconclusive”. They have never been able to determine juvenile versus adult, but her age would seem that way she would be more on the juvenile end .. that seemed a little more hopeful anyway. However no one has said either way. I don’t think anyone knows. Any other other ideas and how we could figure it out? It seems that if we knew exactly what it was, that would help treat it.. She was only 19, she is 22 at the time, but this thing is aggressive and relentless. Of course I want to leave no stone unturned, at this very point, things are very rough for her. All input is good input.
I will follow your leads on the lady at Duke. We were just there, and worked with a Dr. Anderson, but no other options were offered. It’s just too far for us to drive. We live in Blacksburg, Virginia, which is about a 3 Hour drive .