Polymyalgia or fibromyalgia?

[bde987]

I had a bad chest infection and adthma flare that took two sets of steroids and antibiotics and high dose steroid inhaler to resolve. Within a week of coming off the medication l became aware very quickly of my thighs, lower back and shoulders and neck being stiff and sore. I was struggling to walk properly .Also had overwhelming tiredness brain fog and headaches several times a day. Blood results were OK other than a slightly raised esr. Gp wasn't sure as a result if l had developed fibromylgia mixed in with post viral syndrome or was one of the 10% of people whose bloodwork doesn't show greatly raised inflammatory markers, so she decided to trial me on prednisalone for a week 15mgs a day to see if it made a difference. If they worked or if they didn't would confirm which diagnosis was the more likely. I am now half way through the week and all my symptoms re either improving or resolved which is amazing. I just wanted to ask if anyone else on here has had a similar experience re bloodworm not showing inflammation causing confusion of the diagnosis and given the steroids are working does that rule out the other diagnosis of fibro etc. Thanks!

[Herman99]

My bloods have consistently never shown sign of inflammation even at the height of this condition. I was fortunate I had an experienced GP who immediately started me on Prednisilone. The drugs took me out of extreme pain and stiffness within an hour consumption.I wish you well and would advise you to read the faqs on this forum re Prednisilone, tapering and general information. A steady planned taper will be key to your recovery.

[PMRpro Ambassador]

Up to 1 in 5 of patients with PMR don't have inflammatory markers that are outside the "normal range" but that doesn't mean they aren't raised for them. It is not uncommon for someone to be given corticosteroids for something else and end up with a diagnosis of PMR when they realise a load of aches and pain has disappeared while on pred only to come back when they stopped. Fibro is NOT an inflammatory disorder so there is no reason for it to respond to pred - though there are doctors who will deny that fact. At least you have a GP who understands that.

[Blearyeyed]

This is actually a bit more complex to answer than the usual post because of the medical problems and medications you were taking just before the symptoms occurred. That is unless you already suffered with PMR in the past.The thing is , it could be Post Viral Syndrome and the withdrawal effects of coming off steroids very quickly after being unwell prior to the symptoms occurring.

The pain could be rebound pain and an acute ( short term) sluggishness in adrenal and autonomic responses from coming off medications " cold turkey" especially if you had high dose steroids for more than two weeks and then nothing .

I've had PVS after being on steroids for a chest infection and Uveitis and from experience I can say the month after coming off the medications felt as bad as having a flare of my Fibro and GCA/ PMR at once.

You could also still have some inflammation left since your original illness and muscle pain , fatigue and various symptoms including fibromyalgia "like" or PMR "like" symptoms because your system was hit hard and needs time to recover.

Unfortunately, if it is partly still being under the weather and partly bad side effects from coming off steroids very quickly being put back on to 15 mg of steroids would obviously make you feel better whether it was PMR or not.

Fibromyalgia, although not an inflammatory condition , does occasionally improve for some people when they take steroids , especially if they also have another autoinflammatory condition , or they experience reactive inflammatory pain triggered by the fibromyalgia nerve pain which is possible for someone with Asthma .

The only way this is usually proved is if after a number of weeks off steroids you still suffer pain and that is helped by using a nerve pain medication and gentle movement instead of steroids as well as you testing positively with proper Fibromyalgia pain point testing.

And , of course , the stress of a previous illness could also trigger either PMR or Fibromyalgia , or even both together. so it is still hard to tell.

This doesn't help you, or the GP , of course , because even with a positive response to the steroids it may still be very difficult to pinpoint if you have withdrawal and PVS , PMR, Fibro , or a combination of them at once, as they can unfortunately all mirror one another. The steroids prior to your new symptoms put a fly in the ointment of being able to say what we usually would; that a positive result to steroids means it's more likely to be PMR.

Unfortunately, the only way to prove it would be to taper off the steroids relatively quickly rather than going "cold turkey", as you probably did after your infections, as well as building up your strength again, and if you find the same symptoms return and increase after a number of weeks off steroids and aren't helped by trying a Fibro pain medication then it's more likely to be PMR. But that is a horrible thing to have to go through ( I can say this with experience with EDS and Fibro and PVS but then developing GCA much later) so it would be better to get a specialist opinion ASAP.

In your case, the only way you will get a more concrete diagnosis is for your GP to request an urgent referral to Rheumatology for you , explaining the complexity caused by prior steroid use in making your diagnosis and that you need specialist evaluation and more tests than those available from the GP to be sure whether you have PMR or Fibromyalgia to decide which treatment to move forward with.

Sorry , for sounding less positive than most replies , but it's important to be sure because you won't want to be on steroids long term if you can't rule out other causes for the pain and symptoms first. Especially if you also need to use steroids quite often for Asthma flares as well.

I think it's worth contacting the GP and discussing things further , take care and let us know how things go , Bee

[bde987 in reply to Blearyeyed]

Hi there, thanks for replying to my post. I think this is what my Gp was struggling with that it's a more complex picture because of my previous chest infection plus I had 2 courses of steroids (40mgs a day) for a total of 10 days and so it is not without the bounds of reason that this was the aftermath of that with some fibro thrown in. She said it is soething that can take weeks ir months to resolve. She didn't want to totally dismiss the PMR though despite only my ESR being slightly raised given as others have said that doesn't mean l don't have PMR. Hence the one week trial of steroids and lam seeing her again next Monday. She had mentioned something about a rheumatologist but to be honest l was really struggling cognitively at that point so didn't take that on board properly. I found your reply really interesting so thank you for taking the time to respond

[Blearyeyed in reply to bde987]

Definitely request the Rheumatology appointment.It is still going to be hard to judge even if you have felt better on the steroids one week on steroids isn't going to tell you that much either way so close to previous treatment and an infection.

You may have just needed a lower dose for a few weeks longer to finish treating your infection and taper off , at the moment you wouldn't be able to tell even if the pain is located in typical PMR areas.

The high dose steroids would have also treated any inflammation in your body not just your chest so it wouldn't be surprising to have only slightly increased ESR even if you have developed PMR.

To be honest I'd keep my fingers crossed that it is still post viral syndrome with pain and stiffness arising from that because , even though it can take a few months to recover from and you need to really pace yourself rather than trying to jump back into your normal routine , at least the recovery is short in comparison to years with PMR or a lifetime of Fibro pain flares.

Had you tried other non steroidal antiinflammatories before going straight back on the steroids?

If you had and had little pain relief from them this would have helped make the diagnosis a little clearer.

Have you still got headaches?

Had your sleep been affected while you were ill, this can also cause chronic pain flares or neurological pain by itself.

It's complicated, I feel for you , try and rest as much as you can , Bee

[bde987]

Thanks Bee, all good advice. I can't take the non steroidal tablets like ibuprofen unfortunately. The headaches are not happening so often nor as painful but not gone altogether as yet. My sleep pattern hasn't changed much at night . I did ask folks on the Asthma forum whether l should be tapering the prednisalone but they said no as l would needed to have been on them longer for it to be necessary and gp hadn't asked me to do this either. I can see it could be any of the potential diagnosis but hope it is not PMR as my Mum had it and saw how she struggled with it and couldn't get below 6mg a day. Hopefully all will become clear soon. Once again thanks. Yvonne