Weak, achey muscles.

[eescvc]

Hi,

I've been having really bad problems with weak and achey muscles in my legs and arms. This stops me from walking for more than 10 minutes or so and can stop me from lifting a drink to my mouth if my arms are particularly bad. It isn't constant but it seems to be happening more and more.

My Rheumatologist suspected myositis but both bloods and MRI came back normal. They then suspected it was due to my vitamin d deficiency, but I've been on supplements for 2 months and my levels are back to normal with no improvement in my muscles.

It's not a pain as such, more a tight achey feeling and a lack of strength. My legs and arms will be like jelly after a small flight of stairs, or after cleaning a surface. It makes me feel pretty useless right now.

I don't have another rheumatology appointment until late august, so I'll probably go to see my GP if it continues. But from previous appointments with both I doubt they'll try to resolve this. If it even can be?

I've gone from 15mg of prednisolone to 2.5mg since January which coincides with the increase in muscle issues, however, they're trying to wean me off completely.

But I'm not really sure what can be done? It's really affecting my ability to be independent as I am often struggling to get places at the moment. I really thought it would have improved by now, but if anything it seems to be getting worse.

Any advice would be greatly appreciated. I'm still pretty new to all of this.

Thanks.

[Hidden]

I’m sorry you have this problem. I have it too - it has been slowly progressing for many years - exactly as you describe. So far tests have shown nothing conclusive for me either to explain it - although neurologists have diagnosed it as small fibre neuropathy as part of my confirmed Sjögren’s. All I can offer is empathy I’m afraid - you aren’t alone with this problem though.

[whisperit]

Hello eescv,

It's reassuring to hear that your bloods and MRI were clear - high CK

levels are a good indicator of polymyositis and MRIs do show the oedema

that is characteristic of myositis. But obviously, we can't make any clinical judgement on these boards.

I think you said you didn't start any treatment for your newly diagnosed AI disorder until the end of January? And a few months ago, you posted saying that you were having trouble with walking? Can you quantify your progress or deterioration at all? If you keep a daily diary of how many stairs you can manage, that might help get a clear picture of a trend? Could you have tapered too early - while the initial inflammatory reaction still needed a higher dose to bring it properly under control?? And maybe your body needs a while to reestablish normal cortisol functioning after the shock of the steroid dosing? People do vary in how easily this happens.

But yeah, no answers here, only questions. Please don't be shy of going back to your GP or rheumy and demanding some explanations. Your presentation justifies every bit of their attention - much more than half the people in their waiting room, I bet! x

[eescvc in reply to whisperit]

Thanks. It is especially weird because before diagnosis and any treatment I wasn't experiencing this symptom at all. Maybe if I'd been walking for hours I'd get the achey muscles but that I'd consider normal. It seems to start almost instantly when I began hydroxychloroquine. I'll definitely see how things progress because I know it's still early days with my medication.

The problem is I've gone from being dropped off at work by my ex partner, and having him do 60% housework etc. To now having to walk to work and do all household tasks. So it could be that it is progressing or just that I am pushing myself more than previously.

[whisperit in reply to eescvc]

Yes, it seems most of us face having to puzzle these things out for ourselves a lot of the time. Just to give you some numbers - according to the latest edition of the textbook on myositis (by Chinoy and Cooper), MRI will pick up myositis in 92% of cases, so that's pretty good. And about 66% of the time, people with myositis will have a CK level of more than 500. So again, that's on your side. But we are all different! I'd definitely advise trying to be systematic about monitoring your capacity for effort - it is surprisingly difficult to remember how things were even a couple of months on, let alone trying to recall exactly what dose of pred or whatever you were on at the time etc...

For what it's worth, I do think that the impact of pred dosing and the importance of tapers is massively underestimated by most clinicians. Too often, we get left to deal with the worry and the confusion in between reviews...x

[Hidden in reply to whisperit]

Mike can you please clarify for me - would an MRI of lumbar or cervical spine pick up the Myositis or would this have to be an MRI of peripheries? In my case I can walk a fair way (albeit gait is apparently a bit off due to left drop foot) but I struggle terribly with standing still - which I’m told is because standing requires more muscle and nerve strength that walking. My arms and hands are becoming ridiculously weak - no grip strength - particularly when resting or after sleep - but nothing showed up on NCS/ EMG 2 years ago so I’m assuming this excludes Myositis? Although pattern of my +ANA points to this so perhaps it will show up at some point. Also do you know how quickly can CK change? Mine was last tested about 15 months ago. X

[whisperit in reply to Hidden]

I'm no expert, but going from what I read, MRIs for acute myositis mainly pick up the areas of oedema in/around the affected muscle blocks. Most mysositis is characterised by weakness in the proximal limb muscles i.e. thighs and upper arms. According to Chinoy and Cooper, 'when whole body MRI is not available, MRI of the thighs is an acceptable alternative since thigh muscles are almost always involved in myositis'.

Looking at my own images, what I saw/was pointed out were very obvious areas of opacity around and within the thigh and knee muscles. Apparently, MRIs can also used to identify areas where there is muscle atrophy as a result of chronic myositis that may not be flaring. This can be used in less obvious regions like heart muscle.

CK levels are definitely quite volatile. Mine have luckily never gone above 2100 (top of normal range is around 180), but they can vary by hundreds or even thousands over the space of a couple of weeks x

[Hidden in reply to whisperit]

Thanks this helps me a lot. My rheum, the only time I’ve seen her 15 months ago, thought Myositis when I described the feeling of weakness and deep bone pain in my legs. But she had my CK done and it was within range apparently so that was that. And so far the more specific ENA markers have all been normal too. So I brushed Myositis from my thoughts.

The muscle pain is more in my very upper thigh and buttock now and I’m not sure that the MRIs of lumbar and sacral areas will have covered my pelvis and thighs. It’s very frustrating when they don’t look at everything in one go or bear systemic diseases in mind - because we are then left feeling some residuous doubt about the “all is fine” diagnosis.

In my case this doubt has magnified due to initial misdiagnosis and aggressive treatments for RA, neurologist who wouldn’t listen, and most recently a lovely ENT consultant who found a structural abnormality in my jugular, explaining my tinnitus and possibly my vertigo, from a sinus CT scan which was previously viewed as entirely normal by the referring ENT surgeon.

I also recently came across a post about groin pain on the EDS HU - where a woman describes her journey with the same pain - which culminated in them finding a large hidden hernia no CT or MRI interpretation picked up on for 7 years. I read these stories such as hers and yours and wonder how on Earth things would pan out if we weren’t pushed to become such assiduous patients?x

[Lupusdown]

I'm also going through all the same thing...Been to emergency rooms twice now and nothing. I have found that doing my own thing is to plan my day around the pain, do what you can but not long enough to hurt your self and be sure that you relax often. Thank you for sharing sis