r/Myositis

Hello guys. I apologize if this is kind of rant-y but I need some advice on where to go next. I have had difficulty with walking for long distances, climbing & descending stairs, squatting, and bending down to tie my shoes. It’s gotten progressively worse. I am waiting for my nerve conduction study appointment, but it’s in November. I need to find out for sure if I have myositis. I did a few physical therapy sessions, and they helped a bit, but after physical therapy, my legs would be pinch-y and sore for over a week. I know it’s bad, but as my leg instability got worse, I started avoiding showering every day because of the pain and feeling like I was going to fall. I started to worry once I felt like I was going to collapse randomly standing in place or something. During my dual enrollment bio 2 class I took earlier this spring, I noticed it most during labs and when I first walk out of my car and into class. I haven’t fully collapsed, but I’ve definitely had to lean my forearms on the table or grip the table for stability. I’m in college now, and it involves a lot of walking. There are elevators and stuff which is good, but other times you have to walk further to an accessible entrance, or the elevator on the opposite side of the building.

I don’t want to lose the ability to walk up and down staircases completely. I don’t want to have to only take the elevator places. I thought about bringing up hard braces of some sort to my physical therapist, but I can’t now since I’m switching to a different physical therapist close to my campus. Soft braces just limit my movement and get sweaty and itchy. Compression gear has yet to give me any relief. I considered getting forearm crutches, but I’m kinda uncertain about how I’m going to deal with my inability to hold any cup, wallet, or AirPods case in my hands while walking. I also feel like forearm crutches are a much more noticeable mobility aid, and i really don’t want to be the center of attention, and for people to not want to be friends with me because they’ll think hanging out with me is too much of a hassle to accommodate to, or that I’d be holding the group back. That’s what happened to me in high school. I went months without hanging out with anyone. Eventually I realized that I was the only one asking to hang out, and that they weren’t reciprocating interest.

I just finally want a new start where I can do well. I spent my 12 grade year almost failing my classes due to many tests and doctors appointments and being in too much pain to walk. I can’t let this carry on into my college life. It’s going to ruin my entire college experience.

Any advice y’all?

I was just informed that my insurance wants to deny the IVIG. My Doctor has set up a call with the reviewer to get them to understand that it is medically appropriate and necessary for me.

Has anyone been denied IVIG that was not eventually approved? And is there anything I can do?

Hi, how long does recovery of a thigh biopsy take? I live up a flight of stairs (it’s a daily battle) and wonder if I’ll need to relocate while the leg heals.
TIA 👍

I’m a 65 yr old woman who has been on rosuvastatin for about 4 years. No side effects till recently when I started not being able to cross my legs and had lots of difficulty getting up off the floor (my granddaughter likes to play on the floor). I just thought it was a getting older thing but asked at my annual physical to see if there were better exercises I should be doing. He decided to run extra blood work and my CK was 2800 and my liver enzymes were pretty elevated. Went off the statin and repeated the bloodwork with slight elevation. Had an EMG and muscle biopsy, both abnormal. Was sent to a rheumatologist who did additional bloodwork and the HMGCR showed that it is a statin caused autoimmune myopathy.

I started prednisone 60mg 3 weeks ago, going down by 10mg each week. The plan is to start IVIG. Here is my question, from your experiences will my muscle weakness improve?

Hi all - first off, very sorry that everyone is in this group. I’m writing on here to see if anyone has had a similar story to what my husband - 41 yr old has been going through.

The timeline:

Since late 2023, he’s had a positive ANA and his PCP referred him to a rheumatologist in Denver to see if he had rheumatoid arthritis because he had joint pain that would travel around his body and would flare up every few months.

May / June 2026 - he started getting the joint pain again, but then it switched to more muscular pain, and then in June, his foot was in shooting pain - he said he couldn’t put weight on it, and then began his back pain where he had issues getting up and down from sitting or lying down. He started developing fevers in late May that would last a couple of days and then would go away. But then, he started getting incredibly constipated which started around the time his doctors put him on Tramadol and Hydrocodone for the back pain. So much so that he stopped eating much because he was having such a hard time going to the bathroom. He would fill up super fast, but his PCP would keep running test and sending him stuff to help with the constipation, all while the drugs weren’t really helping his pain much.
- on June 17th, we saw that same rheumatologist again, because his PCP was saying this could be Lupus or MCTD. The rheumatologist, even though he had mouth ulcers, alopecia, red spots on his hands and feet, and the ANA positive marker, told us “you’re not a story for me to fix, I think you need to work with your PCP and pain management”. She did give him Gabapentin to see if that would help the pain, but it really didn’t do much.
- on June 29th, she agreed to have him start Plaquenil.

July 13-30, 2026: 1st hospitalization after I brought him to the ER, because he had a fever, had an increased heart rate and had some pain while peeing. They finally admitted him - it was our 4th ER visit since late May. They admitted him for a sepsis panel but then neurology and infectious disease got involved. After a ton of testing and MRIs, they diagnosed him with myositis (lumbar and thigh MRI confirmation) and Transverse Myelitis (lumbar MRI). They did a brain MRI, but that came back negative for anything. They immediately started high dose steroids through IV for 5 days, and then tapered to 60 and then 40mg. Everyone at the hospital kept saying this seemed to be rheumatological and to go see the rheumatologist again.

August 4, 2026: he saw the rheumatologist, who after seeing his 22 pound weight loss in 2.5 months and the results from the hospital told him he clearly had a rough last few months and would want to treat this aggressively. So the plan was, she diagnosed him with inflammatory myositis and said it wasn’t lupus or rheumatoid arthritis. She wanted to aggressive with it, so she wanted to put him on Rituximab and would hopefully get that going in the next couple of weeks, while they tapered his prednisone. He’s on a ton of other meds at this point.

August 5, 2026: he develops a very intense burning and tingling feeling in his arms - from fingers to a bit past the elbow. The PCP and rheum think it’s an allergic reaction so they send him Benadryl first and then Hydroxizine when the other one doesn’t help. He now gets these intense shocking flares (is what we’re calling it) up his arms, and then in the past 5 days it’s progressed to his upper torso, back, neck and his head right above the back of his neck, as well as ears and back of neck feel like there’s a pressure there and numbness.

August 14, 2026: went to the first outpatient neurology appointment and they were so concerned about this new arm stuff, coordination with his hands and numbness/tingling in the head and torso, that they wanted to do another urgent MRI to make sure nothing had spread for the transverse myelitis. We just got word that the MRI showed the exact same transverse myelitis inflammation as it didn’t in July, same location, nothing new which is good, but they’re now puzzled as to what is triggering this new arm stuff and numbness/tingling, and a new balance issue. They did a brain MRI too but it came back negative. So, to a PET scan we go tomorrow and I’m freaking out. The doctor that told us about it just now had 0 bedside manner. But the neurologists and trying to find someone that can also de an EMG.
- His potassium is low and they’ve had him on potassium pills since we got here this 2nd time around.
- they’re also doing B12 shots because of how low his numbers have been, and that’s been since the 1st hospitalization in July.

If you read this, thank you! I know it’s long, but I figured with how complex all of these situations are, to give more information on it. Just wondering if anyone has been through a similar thing with their myositis and diagnosis.

Family and friends are telling me that I need to take him to the Mayo Clinic. I’m worried for him, but I’m holding out hope it’s nothing more intense and it’s the myositis just flaring up again. Just seems like no one at the hospital knows what myositis is and what to do here.

Thanks again 🩷

Hi, can anyone recommend a surgeon for a biopsy on my quad muscle? Rheum is saying any general surgeon is fine, when I call they suggest neuro or neuromuscular specialist. Unfortunately, most are out of network near me (southern california). Thanks for any help!

Edit: Rhuem suspects myositis, but myositis antibodies negative, EMG and RNS negative, I am testing positive for other neuro & rheum antibodies (anti-vgcc, anti-ganglionic achr, anti-PR3 / c-ANCA)

I’m wondering if myositis could explain my issues. I already have an autoimmune disease (AS). Randomly in March, at 40 years old, I developed Raynaud’s in my right foot. I knew that could be a sign of something autoimmune coming soon, but I had no symptoms so my rheumatologist did nothing… 🙄

Then a month ago, I started getting frequent sore legs out of nowhere for 7-10 days, which progressed to bilateral muscle weakness in both thighs, and I can also feel pain and stiffness in my calves (I know it’s not a common myositis spot but I’ve seen patients mentioning their calves too).

Basically my symptom is feeling like my legs will crumble. I don’t like walking anymore because they feel unreliable. I mainly feel the weakness in my thighs, but like I said my calves can also feel pretty sore. Maybe they are compensating? My thighs never really feel sore per se. I also get a weird vibration feeling in my muscles that’s so hard to put into words…

I can still walk on my toes and walk up stairs and all that, but my muscles get terribly sore from just a normal day of moving around, and often times when I’m at rest my muscles will feel like they’re burning almost, almost as if I had a big day of working out even though I didn’t do shit. I also feel like my legs are kind of shaky going down stairs.

I freaked out over ALS at first and went to see a neuromuscular neurologist and had an EMG that was normal. She ruled out ALS, told me it wouldn’t start in both legs symmetrically anyway, and said she didn’t find evidence of myopathy either… She tried to tell me I had Functional Neurological Disorder but I don’t buy that. Not with the Raynaud’s clearly indicating something going on.

I have yet to do a CK blood test but my urine has not been dark. I probably don’t have rhabdo but I feel like it could be polymyositis?

Did some of you had a normal EMG and later were diagnosed via biopsy or blood test?

Thank you for your input! And sorry for the long text. 🤦‍♂️

It’s a terrible disease. He’s just slowly becoming less capable of walking, holding things, even sleep. He loved to play the piano but now he can’t it’s really depressing him. I really want help him any way I can. What can I do besides empathize?

They keep telling me no I don’t have dermatomyositis. Nothing positive on labs, skin biopsy came back with issues but dermo said no DM, lower body EMG consistent with neuropathy from chemo but no DM. I have almost all of the symptoms so I didn’t want to believe them but I did and started looking for other disorders thinking maybe a dual diagnosis. Then I thought maybe chemo was just continuing to be the gift that keeps giving. Nope. It is most likely DM but paraneoplastic dermatomyositis. Initial labs are pointing that way but need imaging and genetic testing (dna sequencing to identify a potential tumor). Apparently paraneoplastic syndromes are rare so I am sharing this with you all so you are informed and can talk to your doctor about screening for cancer. Do know the symptoms can start well before the tumor is visible with standard tools for screening. Be well.