PMR and fibro

[juliegeorge]

First time poster here so please be gentle 😁.I have been suffering with shoulder, elbow and wrist pain, neck and hip pain and sometimes pain that goes like a pulse to my big toe or thumb.

Pain is worse overnight and in the morning.

My arms and shoulders feel cold achey pain during the day and sometimes a little weak.

The lethargy is all encompassing and affects life each day. I seem to suffer more after I have had a busy day.

I went to the GP who ordered bloods. Inflammation markers not up but he said that everyone was different and would not just look at that.

Put me on 15mg prednisilone once a day for a week, then a week of 10mg and a week of 5mg to see if it helped. The lethargy did not change and I will had some random pains in places but the steroids did help with the main pains that wake me in the night.

GP said it is likely to be fibro and that I could have steroids for PMR symptoms but I was not happy about the steroids permanently. It seemed like he was veering towards fibro yet said I may be experiencing both.

Does any of this seem familiar? Should I ask for steroids?

[piglette]

Have you tried painkillers? If so did they help? If you have an auto immune disease you would expect lethargy.

[juliegeorge in reply to piglette]

Hi Piglette

I have never had any success with pain killers from paracetamol to nefapam with this. All seemed a waste of time

[piglette in reply to juliegeorge]

Painkillers do not really help PMR at all so it is quite a good way of finding out if that is what the problem is, particular if steroids have a magical effect. While on the other hand steroids do not help fibro at all. Hopefully doctors should know this.

[PMRpro Ambassador]

If the pain improved with the pred - it isn't fibro because that isn't inflammatory. While 15mg is a common starting dose it may not be enough for everyone and the 2015 Recommendations say to start with the lowest effective dose in the range 12.5 to 25mg. Some people also need a bit longer at that starting dose.

The pred doesn't cure - so the fatigue that is part of autoimmune disease remains. That must be addressed by lifestyle changes and pacing - that it is worse after a busy day is absolutely usual.

Unfortunately, the only option and mainstay of management of PMR in the UK is corticosteroids - and PMR lasts as long as it lasts, anything from a couple of years up. I had had it for 5 years before it was diagnosed so it doesn;t always disappear as quickly as many doctors seem to think.

You mention night pain - when in the night and where?

ard.bmj.com/content/74/10/1799

[juliegeorge in reply to PMRpro]

Thanks for the reply.

The pain is generally shoulders to elbows and sometimes wrists and hips.

You mention autoimmune problems. What is this I. Relation to PMR?

[PMRpro Ambassador in reply to juliegeorge]

PMR is an autoimmune disorder - where the immune system goes haywire for some reason and is unable to recognise body as self so attacks body tissues in error, causing inflammation and so the symptoms experienced.

[juliegeorge in reply to PMRpro]

Than you, I had not realised this. I meant to say that the pain at night is mostly part way through sleep and I to the morning.

I am beginning to wonder in that case if the fibro is a total red herring? Is there anything I should be asking my GP?

[juliegeorge in reply to juliegeorge]

Also, sorry, brain not working great, between my shoulders I to my next and top of my back where my neck is.Does PMR also cause brain fog?

[PMRpro Ambassador in reply to juliegeorge]

I wondered if it is earlier or later in the night. PMR pain tends to be worse after 4am but can start earlier once on pred if the antiinflammatory effect isn't lasting the full 24 hours which is doesn't for some. But very much earlier pain suggests something else as the problem.

The fibro COULD be a red herring - many doctors seem to use it as a fall-back so they don't admit they haven't a clue! But any pain that improves with pred isn't fibro. Unfortunately, up to 1 in 5 patients with PMR don't have raised blood markers - or at least, not out of normal range though they may be raised for them.

Yes, any autoimmune disorder can cause brain fog but so can pred for some, especially at higher doses.

Have you had a look at the FAQs? The link is in a box at the top of every thread. Lots of them, in alphabetical order, browse through them and have a read. They contain info from posts about PMR and GCA and you will learn a lot from them and often they answer potential questions.

[HeronNS]

I wasn't happy with the thought I had a disease which needed pred to deal with the symptoms and after a self-diagnosis on google I went into denial and basically forgot about the possible diagnosis. At a certain point, after a year of suffering, things were so bad that I finally got to see a doctor who could understand what was going on, filled my prescription on the way home and took, first dose as soon as I got in the door, I was so desperate.

[juliegeorge in reply to HeronNS]

How long ago was this and do you think it has helped?

[HeronNS in reply to juliegeorge]

I first definitely had PMR symptoms in 2014. Diagnosed in June of 2015 and given a week's supply of pred. Within 6 hours I remember thinking, surely it's not helping already? On the morning of the third day I realized I'd got out of bed with no problems and was puttering around like a normal person, no painful four step several minutes long process to get out of bed! Because of the excellent response there was no break in the treatment, my then new doctor gave me a prescription to keep on taking 15 mg pred for four more weeks, and instructions to begin tapering at that point. Yes, for me it was a miraculous response! I have been taking pred since then, but after two years of tapering I was at about 2 mg pred and have been at or near that since, with a 6-week, unsuccessful flirtation with zero pred in 2020. I *think* things are getting near zero more successfully this time, currently at 1 mg, but time will tell. After all I've been here before. My doctor did tell me right at the beginning that some of her patients keep 1 mg tablets on hand just in case, even after they've tapered, and that turned out to be necessary for me three years ago. I have a different doctor now but he has proven equally helpful so I've been lucky.

[Flutterbies57]

I was diagnosed with Fibro for 17 years before PMR hit . This new pain hit overnight and was very intense compared to Fibro . I was put on 20mg for a week to see if it helped . It did ! I was really reluctant to take steroids for the first 6 months. I did take it because I got relief , but I researched and researched , and changed foods etc . Eventually I had to accept I needed the steroids . Good luck with whatever you decide . I’m glad I accepted that I needed the drug to get some relief .

[Missus835]

I took my first dose of 20 mg Prednisone right at the pharmacy in Jan.'22. This was after going undiagnosed for 5 months. In debilitating pain. My then GP attributed it to old age.The result was no less than miraculous. I hate taking new meds, but this one gave me my life back. There have been ups and downs, but I eould not do anything differently.

[Bramble2000]

How bad is your pain? Do you have really bad stiffness? My PMR is totally debilitating. I was diagnosed with fibromyalgia many years ago. The pain of PMR is completely different, for me. PMR can and has been for many of us, completely disabling. My guy feeling, from having read what you’ve written is that yours isn’t PMR. However, you need you see if a good dose (20mg) for a week or so more or less gets rid of it all. If it does, it’s much more likely to be PMR because Fibro isn’t inflammatory. X

[juliegeorge in reply to Bramble2000]

I was on a dose of steroids and the pain reduced massively.

I am seeing my GP again Friday to discuss a way forward. My GP said that the exhaustion was likely to be fibro. I don't think he realised that PMR can have the same effect.

[Bramble2000 in reply to juliegeorge]

exhaustion is more likely to be PMR in my opinion because the body is dealing with huge amounts of inflammation.

[juliegeorge in reply to Bramble2000]

So does PMR have to be totally disabling to be PMR?

[Bramble2000 in reply to juliegeorge]

Not always but it very often is

[PMRpro Ambassador in reply to juliegeorge]

No, not at all. It comes in all shapes and sizes. It is the doctors who have a textbook vision that bears little resemblance to reality!

[phebamom]

Fibromyalgia is what I was diagnosed with several times over the years. The delay in diagnosis is why I am still ill with PMR/GCA 20 years later. Fibromyalgia does not cause a greatly increased SED rate. Find out what your SED (sedimentation) rate is. That test is an indicator of an actual inflammatory process in your body. The SED rate is not automatically an indicator of PMR, but indicates an inflammatory process in your body. Fibromyalgia does not cause a clinically significant raise in SED. Also, read this article, which is a more accurate description of what PMR truly is. It is not just hips and shoulders.

jrheum.org/content/jrheum/4...

Hope you get it figured out.

[juliegeorge in reply to phebamom]

Thanks. I will ask the GP to do a SED bloods

[juliegeorge]

5 months on and not been on here as I felt that maybe I was in the wrong place after the comment about not being debilitated enough for PMR.Finally saw rheumatologist last week who felt that although my bloods had not shown inflammation the reduced symptoms (having been on steroids) were.... Wait for it..... Atypical (I know just how much you all love that word).

She has taken me off steroids and booked me in for a PET CT scan as she wants to make sure it is not anything else. I had bowel cancer 3 years ago so I guess it is a sensible precaution .

5 days later and all the ains are back but the interesting thing is so are all the oddities like an itchy ear, non specific pains in legs and feet when in bed, so I guess I can at least add these to the list of things that get better with steroids.

[DorsetLady PMRGCAuk volunteer in reply to juliegeorge]

As you imply- your response to steroids sounds very typical including the lack of inflammation markers…

Guess you’ll have to see what scan shows.. but do keep a diary on pains etc for further discussions, and do let us know please how you get on .. a new post would best…and good luck .

[PMRpro Ambassador in reply to juliegeorge]

As I said - it all depends and also on what you call debilitation. I functioned for 5 years with untreated PMR including going to the pool daily for aquafit, working and skiing in winter - didn't do anything without pain though!

Do hope the PET-CT shows something useful, And as DL says - start a new post next time. Only she and I and a few others who may have followed the thread will see this. And do keep a diary.

[yogabonnie]

Any updates?. sounds llike PMR to me. Hope you have received help from a Doc. !

[juliegeorge in reply to yogabonnie]

Still waiting for PET scan appointment. Been 2 weeks so early days yet.