Muscle pain and stiffness

Matilda

Since Feb this year I have experienced severe pain and stiffness in my muscles - I have a very bad day followed by a better day.  My rheumatologist is baffled because the muscles are worse than the joints, though there is permanent damage to joints from past inflammation, and is going to send me for an MRI scan.

 I take abatacept infusions, low dose steroid, naproxen, codydramol, ibuprofen and devil's claw - none of which are much help but better than nothing at all
Does anyone know why the muscles should be even worse than the joints when usually rheumatoid arthritis mainly attacks the joints more than muscles?

EmmaB

Hi @Matilda

Have you tried a heated wheat bag, I find it can help relax the muscles and ease the pain...

I got this one from Amazon and really like it:

https://www.amazon.co.uk/gp/product/B00LKLJSSI/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

I'm just about to start taking Tumeric capsules as it is supposed to be good for inflammation but no idea whether that's a good idea if you have RA?

I hope you can get it sorted....

Best wishes.

Emma

Matilda

Thank you @EmmaB - I'll try a heated wheat bag.

 I tried tumeric a while back but didn't work for me.  I find that devil's claw do help a bit.

EmmaB

I'll try the Tumeric - seeing as it's arriving today! - and if that's no good you've given me a new idea in the Devil's Claw [not heard of that one].  So thanks @Matilda

The only other thing that springs to mind is whether you've considered mindfulness? Lots of stuff on google and YouTube - key player here is Jon Kabat Zinn.  

I thought mindfulness was a load of mumbo jumbo when I first encountered it but I've changed my mind.  If any of the pain is due to tensing up then the relaxation aspect of mindfulness can be helpful in itself...

In my experience it's about searching around for something that works for you, the medical profession can only help to a limited extent [in my experience anyway!].

Best wishes.

Emma

Matilda

Hi @EmmaB

Many people say that tumeric works for them and I hope it works for you.

I'll take a look at the mindfulness videos. Thank you for the info.'ll have to find something that works.

The muscle problem began after I was taken off rituximab because it lowered my immune system.  If my immune system improves I hope I can take rituximab again.  Have to wait and see.

Devil's claw is a traditional remedy for muscle pain.   There's no scientific evidence - only word of mouth but I find it helps a bit.  Available from Holland & Barrett website and probably from Amazon, too. 

Chloe_Alumni

Hi @Matilda, sorry to hear you're in pain. I too can recommend a wheat bag or a hot water bottle. I also found that epsom salt (which you can put in a hot bath) helps after a long day. Hope you find a bit of relief soon!

Matilda

Thanks, Chloe.

Matilda

'Mind over matter' can work.  When I have something compelling to distract me I don't notice the pain and stiffness. But day to day living isn't distracting enough.

But I don't think we should have to search around for remedies ourselves.  What are doctors for?  They are paid enough.  I once read that doctors themselves regard their occupation as more of an art than a science, I.e. a lot of subjective judgements.

I know from experience that a higher dose of steroids would reduce the pain a lot.  But my rheumatologist won't prescribe them because long term use can cause diabetes.  I'm willing to take the risk but the rheumatologist won't to cover herself.

EmmaB

Hi @Matilda

You ask an interesting question - what are doctors for i.e. why aren't they the ones  finding effective remedies for us...?  

I take doctors advice with a pinch of salt - their suggestions tend to be drug orientated and in this respect not very imaginative!

As you probably know yourself a lot of 'remedies' for pain - be they activity, mindfulness, supplements or whatever, are more effective than drugs and with fewer side effects or long term effects.  

Pain killers are not effective long term anyway and doctors really should be coming up with more imaginative solutions with people - but often people only want to consider the medication route [as often it is simpler!]

It's interesting to see what works for others and because everyone is different it makes sense that we have to look for the thing that works for us - after all we are far more the expert on ourselves than any doctor!

All the best.

Emma