UCTD/Lupus Muscle Weakness and Bone Pain - LUPUS UK


29,047 members25,459 posts

UCTD/Lupus Muscle Weakness and Bone Pain

Hnewman2 profile image

Hi There!

I was just wondering if anyone had experienced similar symptoms. I seem to have a mix of different pain/sensations at different times.

I often get the ''hit by a bus/ coming down with flu'' feeling all throughout my body and have muscle aches terribly but sometimes the pain is a really deep throbbing pain which almost feels like its coming from my bones? Typically this is in my legs but it affects my arms too. On a scale of 1-10 it tends to come on at around a 4/5 being an achy pain with twinges of 6/7 pain that last a few seconds/minutes and then the pain goes back to the aching sensation.

Alongside this I am experiencing what I thought was muscle weakness, there was a time recently where I was out at a restaurant and my legs began to ache, I was there for around a couple of hours and tried to ignore the pain the best I could, when I came out of the restaurant It was hurting a lot but I had to drive (in hindsight I probably shouldn't have done so.) By the time I got home It was really bad and as I tried to walk up the stairs into my flat my legs just gave way and I suddenly could not get up or move due to the pain.

At this point I was in floods of tears and sobbing from the pain which I would rate an 8/10 on the pain scale.

Luckily my partner was with me and he was able to scoop me up and carry me into our flat and onto our bed, he immediately reached for my painkillers ( I took two Co-Dryramol 500mg) but the pain persisted for at least another hour.

Alongside the pain my muscles felt incredibly stiff and weak, I could not move them at all.

I assumed that this was inflammation of my muscles but I cant find much info on this.

Has anyone had similar experiences?

11 Replies


Yes I have these symptoms to have you ever had a ck and myosotis blood test done? 😊

Hnewman2 profile image
Hnewman2 in reply to Cara_H

Hi Cara, No I haven't yet, I had my first app with Rhuemy on Monday but she didn't seem too concerned about my muscle weakness.

Sorry I'm new to this, what's a CK?

Thanks x

Cara_H profile image
Cara_H in reply to Hnewman2

Oh never that's strange. I had mentioned in my app how I felt like I had been hit by a bus and feeling like I constantly have the flu, with everywhere aching!

Ck stands for creatine kinase it detects inflammation of the muscle, mines very raised and even being on all my meds & having infusions It won't come down.

The three types of CK are called isoenzymes. They are:

. CK-MM, found in your skeletal muscle and heart

. CK-MB, found in the heart and rises when heart muscle is damaged

. CK-BB, found mostly in your brain

A general CK test can tell whether there is damage to your body's muscles. Going a step further, the CK with isoenzymes test may help pinpoint where the damage has taken place.

I have a cardiac MRI next week as I have had recent blood test called a troponin and that is high. The MRI test will show if the heart muscle has been damaged.

On your next app with either your rheumy or even gp to mention about the bloods as they can help detect the problem. Hope this helps x

Hnewman2 profile image
Hnewman2 in reply to Cara_H

Thank you Cara, I had some blood taken on Monday and I've checked the list and yes they are testing me for CK . I'm just hoping something shows up and they decide to give me some meds to help because I haven't been given anything just yet 😔

Cara_H profile image
Cara_H in reply to Hnewman2

That's good news then! Hopefully they will be able to help you in some way 😊

I have UCTD/SLE and find that my symptoms often change with the passage of time which I attribute to the cocktail of CTD's. I did experience quite significant weakness a few years ago. All muscle tests, bloodwork etc were unremarkable but it affected my eye/eyelid muscles, wrists/arms and legs but usually in bursts. I can feel terribly wobbly in my upper legs and at times haven't had the strength even to hold my phone! Thankfully, I seem to have passed the worst now but I never know what to expect. My Rheumy was unperturbed throughout these years and blamed everything on uncontrolled disease which I disputed regularly. He was, however, entirely right.

It's very hard for us as patients to discern between weakness, pain and fatigue therefore even harder for our doctors to read into the cause of our symptoms. New symptoms can be very distressing and definitely need to be mentioned to your Rheumy and monitored - I hope yours are as transient as mine. Clare

hi i can relate to some of this Have you been pushing yourself to go out that night with some tender aching in the joint like you feel a bit of inflamation in the knees. then you feel like you ligaments are drying out to walk on in your knees or arms Which in turn makes your body feel like it is drying your bones out. next morning you feel a little stiff but it wears of a bit after the first couple of hrs Then the above starts all over again.

I am having a flare up of the exact same UCTD symptoms myself right now. The weakness in my upper body has been unbareable, along with the tooth ache/dull ache type pain that is never ending.

I keep sweating and every joint in my body has hurt or is sore.

My legs feel like they are encased in concrete, studded with nails when I walk.

And I keep getting that sensation that someone has pulled a plug out of me and drained all my energy along with the sudden need to drop to sleep on the spot and I'm so stiff, I feel like the tin man from the Wizard of OZ.

I also have Fibromyalgia, so I never know which complaint is causing the muscle problems.

I'm due to see my Rheumy in 10 days so, I made an appointment with my GP today to do the blood tests before I see my Rheumy, so that he will already have seen them by the time of my appointment.

This time last year, I was doing really well.There was no inflammation in my bloods at all. So, he decided to cut my Plaquinel, because he's worried about my eyes. It has put me back a good few years. xx

Rest. Your body is telling you to stop and slow down. We are not lazy. We need rest. You will feel much better after. Try not to push yourself so far. Learn to listen to your body. When you feel the sick feelings start, take a nap or sit for a bit. Our muscles are tricky. My eyebrows hurt which is ridiculous. I found the muscle pain wasn’t controlled enough by rest. I take a low dose of baclofen for muscle/stiffness issues. I wish you the best.

I have this array of symptoms too and often significant weakness. Nothing ever shows in blood tests - the weakness is simply a feature of my flares. Pain in muscles, joints, bones and everywhere else? Oh yes.

@Jimbo1605 hi I saw your post about your wife's symptoms and stumbled upon Hnewman2's and thought it might be of some help.

I too have similar pain in my shins as well as pain in calf muscle and lower leg weekness among other things and am also trying to find out why.

You may also like...