I’m having a PJ day today. Had a UTI come on yesterday that I’m trying to shake off myself. Plenty of experience with that over the years. Plus I woke with a headache, Very lethargic.
I have been wondering for sometime if I’m having symptoms that could be Myositis.
I’ve struggled with my legs in various ways over the last 13 months in particular. But have been plagued with osteoarthritis, inflammatory arthritis due to lupus, bursitis in hip and knee. Last summer my mobility was very difficult. At times it felt like my whole legs were on fire. Difficultly standing still for a long time or walking too far. Balancing that is hard and if I walk too far, it results in days in bed. I know you all understand this.
But during a flare up in March this year I started struggling to get up from standing from the sofa or a chair, I was slow and it was very painful. The longer I’d been sat, the worse it was. This subsided over months.
In the last week this struggling to stand from sitting is back again. But I also have a very painful “lump” above my left knee. With more pain there and heat to touch. I showed my husband last night. He could feel the hard bump under the skin. He says that’s your muscle. But when comparing to my right knee, there’s no hard lump in that place on the right knee. It feels like a swollen lump.
When you look at websites on Myositis the very first symptom listed seems to nearly always be struggling to stand.
Does anyone else have this type of issue? Is is part of lupus? Or is it Myositis? Does anyone have systemic lupus and Myositis diagnosis?
I've got UCTD and developed polymyositis about 2 years after that diagnosis. The main symptoms were pretty typical - I had pins and needles in my thighs (its typical for the biggest muscles to show symptoms) nad found it hard to climb the stairs. My GP did the usual "strength" tests ("push against me") and declared there was no problem. Luckily, I knew this wasn't right and got a CK test done. That showed a CK in the many thousands, which is very suggestive of myositis. This triggered my rheumy to ask for electromyography and muscle biopsy which confirmed PM. The symptoms went on to include difficulty swallowing, which luckily responded quickly to large steroid doses.
My PM has been mainly quiet since then, but its not something that gets "cured". You have to keep an eye on it and I have a small supply of CK blood forms ready signed for me to go for a blood test whenever I feel like I might be flaring.
It's been a very long time since I heard from you and you have put a smile on my face!
I am sorry to hear that you have UCTD and polymyositis. These autoimmune diseases never come alone, do they!
I too find stairs a struggle when I am having difficulty in standing up. My legs can feel like dead weights. I know that it's not a bone issue and it doesn't feel like a pulled muscle. And it is always both knees at the same time with this feeling of weakness and struggling to stand - so not one side only.
I will definitely be raising this at my next GP and Rheumy appointment. I think I have had one CK test a long time ago, probably around 2014, when diagnosed. So I will check this out.
Lupus is the gift that keeps on giving (sarcasm of course).
You can get stuck in a vicious cycle of muscle weakness just by virtue of laying in bed a lot, which people with lupus often end up doing. Your strength just diminishes because you're not using your muscles.
This is a common problem in the elderly too.. and the origin of the old maxim, 'If you don't use it, you lose it.'
During the worst of the pandemic, I noticed I was getting *very* weak because I no longer left the house much. It started to feel strained standing up, climbing stairs etc. But as I got more active again, my strength began to build back up.
I also badly pulled a muscle in my leg, and for a long time afterwards it was miserable and I just lay around in bed because it hurt to stand up or walk. The muscles around my knee just kept spasming.
You can get stuck in a loop where one muscle tenses and spasms, which throws the other nearby muscles off too. So the muscle that originally spasmed will eventually exhaust itself and stop spasming, but another muscle near it will start spasming and take over the cycle.
I pulled the muscle in the back of my knee, but eventually I started to have a muscle spasm on the front or inside of my knee next to the joint rather than behind it. It was a hard little painful knot, because the muscle was basically contracting most of the time. A muscle can get quite hard if its contracting, and you won't see that on both knees because only the one knee's muscle is contracting.
I realized I needed to do stretching (carefully) to help my muscles stop spasming. And I used a percussion massager on the spot with the knot to release the spasm. Local muscle pain cremes also help. Then I needed to focus on making sure I was getting enough stretching and walking in to keep my leg muscles healthy and strong.
And I learned really important: Drink enough water! Dehydration is actually murder on muscles and can lead to muscle weakness, cramps, and spasms, especially in the legs and feet. I realized I wasn't drinking enough water, and keeping well hydrated helped.
So don't assume that this is necessarily myositis. Go to the doctor and ask for a checkup if you have doubts to make sure what is going on if you're worried about it or it is impacting your life.
Due to the strong combination of medication that I take for my lupus (methotrexate, MMF, hydroxychloroquine, mepacrine, amitriptyline, folic acid, vitamin B and vitamin D) I can lead a relatively good standard of life for someone with lupus aged 49 and luckily my days in bed are very few and far between now.
I definitely haven't pulled a muscle and the lump above my left knee can be felt whatever the position it is in and both legs were in the same position when examining and comparing them.
Although I have a cleaner once every two weeks, I do my own food shopping, run my house, walk my dog and somehow juggle 3 teenagers. So I think although I wouldn't say that I am fit, I am quite active.
I also drink plenty of fluids. I have Sjogren's so the dreaded dry mouth is a very real issue for me. I only have one caffeinated drink first thing when I get up and then the rest of the day is water or ginger and lemon tea for me.
I will be mentioning it to my GP and Rheumy at the next appointment, as this struggling to stand has been going on, on and off, for 9 months really.
Thank you for your detailed post. Since I’m having similar problems/ left knee and thigh pain with lumps on side of knee and above I find your post encouraging. I’m in physical therapy now after rotator cuff surgery and my therapist is wonderful. She can only work one body part at a time but as I am limping badly she says she will give it some attention. She gave me new stretches to do. Every morning. It’s frustrating to “wait and see.”
I used to get weakness every summer. Then GP found my potassium was going down, and this was worse in the summer. Cause never been found and I'm wondering if it has an autoimmune basis.
I'm going to get CK blood test done at some stage to check for muscle damage.
Sorry you have this problem, Wendy.I have been suffering similar problems for at least 18 months. It started with a hard lump that looked like swelling and was hot above my right knee. I've had leg weakness since 2018 but no swelling like that before.
It was largely ignored by my rheumatologist and I started to get similar in my left leg and then progressively swollen and painful areas spreading up both thighs.
My CK has been normal and I had a leg MRI last August which was initially reported as showing oedema and suggestive of mild myositis - but oddly only in my lower legs!!
My rheumatologist reviewed the MRI with a different radiologist and decided I didn't have myositis but didn't offer alternative explanation - I'm still no wiser.
Saw a different rheumatologist who said it was probably fluid leaking from my blood vessels into the tissues, but not fluid from inflammation. So what type of fluid is leaking? At this point I'm left dumbfounded as if there's no inflammation going on, why are the blood vessels leaking?!
I therefore cannot help you directly as I still have no clear answers myself. But if the theory of liquid leaking from blood vessels is accurate, then this is happening supposedly due to my small vessel vasculitis (anti-C1q positive) inflammaming theur linings.
I wonder if you have been tested for that type of vasculitis too? If not, it's a simple blood test your rheumatologist can run.
Maybe see if you can get a leg MRI done too - it may show up things that help piece the picture together.
Also, I contacted a myositis charity who told me it is possible for some people to have myositis and be sero negative for CK. Maybe this is something to discuss with your drs?
I truly hope you get some answers and relief from these additional problems in top of what is already a hellish condition to manage 🤞🏻🤞🏻🍀 And if you do get answers, please do let us know.
Hi Wendy, I can’t help with your thought of myositis. I was given exercises by physio as my joints grate on each other, he test my joints, arms and legs and felt that my thigh muscles were quite weak and has given specific exercise that is helping.
Hello Wendy,I can relate to what you are saying in many ways. I have Dermatomyositis which is a disease thar affects both skin & muscles. I have had this condition for nearly 9 years. I very much struggle to climb the stairs. Totally breathless when I reach the top. Pausing in between steps. When I reach the top landing I feel like wiped out, sweaty and breathless. Rising from a seating position takes alot of effort and is painful. Standing for a short period brings severe back pains and hip pains, travelling down both legs. Small painful lumps form under the skin and move around. Every day is a battle. They may do a muscle biopsy to diagnosis the myositis. I wish you good luck. Please keep us posted.
Hi Wendy
There are blood tests that will indicate a diagnosis of myositis.
I’m sorry I don’t have words of wisdom to help you. I’ve been reading your posts for a long time and I just wanted to say I’m so sorry for all of your suffering and struggles sweetie.
I’m sending gentle hugs and much support your way.
Praying you’ll get relief soon hun.
Take care lovely.
Love and prayers.
EJ 🤗♥️🥰🙏🕊🌿🌸🦋
Oops…forgot to tell you I ♥️♥️♥️ your adorable furbaby ❣️❣️❣️
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been waiting a long 7 years for a diagnosis!
Muscle weakness
Haven't been diagnosed, but wondering if anyone has this symptom
I’m sorry if this offends anyone 
Struggling to get any doctors to listen to me.
