Fibromyalgia and PMR?

[Birdyloo]

Hi there, I am 55 and was diagnosed with PMR in January 2019, put on 20mg pred as 15 didn’t do the trick. Added Alendronic acid due to a poor Dexa scan result and also take Adcal D3, K2 and magnesium for my bones. I reduced the pred slowly and steadily but struggled to get lower that 12.5mg without pain returning. Started methotrexate early this year as prescribed by my rheumatologist and for those that maybe in a similar position have had no problems with it apart from my hair going a bit frizzy and mad looking in damp weather! The metho has also helped me taper down to 4mg pred at the moment and until recently I felt better on metho plus a little pred than on the higher doses of pred. Recently though I have started to feel very tired all the time. I am still keeping active but have to rest regularly. I sleep well but never feel fully fresh and ready to go in the morning. I saw my rheumatologist again this week and she has diagnosed Fibromyalgia on top of the PMR. Is anyone else in this position or have experience of this and have any advice for me on how to move forward from here please? Rheumatologist thinks the PMR is well controlled and the plan is to continue to very slowly taper the pred to zero if possible. I would then continue methotrexate for about a year and have a second Dexa to see if further bisphosphonates are needed. Thank you all for this forum which is so helpful and informative, I don’t post very often but keep up with what’s going on all the time.

[DorsetLady PMRGCAuk volunteer]

Has your Rheumy considered it might be your adrenals struggling to start working again? Run this past her and ask for a Synacthen test - that will tell you if they are capable of working, but not if they actually are.

[Birdyloo in reply to DorsetLady]

Thank you, I did ask whether the tiredness could be caused by either the metho, or the disease or the low dose of pred . . .

[PMRpro Ambassador in reply to Birdyloo]

After 4 weeks of methotrexate I could barely put one foot in front of the other - it was fatigue like I had never known with PMR! Wasn't very practical so I stopped it ...

[PMRpro Ambassador]

At a dose of 4mg after the best part of 2 years on pred, I would think that poor return of adrenal function is FAR more likely than fibromyalgia. What IS their preoccupation with fibro?????

[SnazzyD]

Hello there, None of these drugs will be helping your adrenal function to return. They will have been inactive due to lots of Pred in the system so that demand from your own system to make natural steroid was zero. At 4mg they really need to work to make up for what you’re not getting as Pred and often they don’t work perfectly and sometimes not at all. Sometimes they work but then not, without much warning. It is important that Pred is taken in the morning and not at night because it is the low cortisol at night that stimulates the brain to make some for the morning getting out of bed. My first symptom of low adrenal function was the inability to get up in the morning without feeling drugged. Some docs don’t believe this bit happens and adrenal glands just work when they should, some do but forget or don’t realise how hard it can be. Did they diagnose Fibro just on the basis that you’re knackered in the morning?

At 4mg I had a Synacthen test to see if the glands were able to work if triggered. At 4mg my score was ok, but not exciting. By 1mg it was fine, but the fact that they can work doesn’t mean they will fire reliably and this is why one is meant to carry a steroid card for a year after stopping steroids. The worst case is if you have a particular physical or emotional challenge and you don’t have nearly enough which can lead to adrenal crisis.It is worth looking up symptoms of secondary adrenal insufficiency so you know the range you can get and when to call a doc, if needed. Hopefully it won’t happen but a slow taper at this stage will make it less likely. Some of us have been referred to an Endocrinologist in parallel at this point to oversee the reduction.

[Birdyloo]

Thank you SnazzyD, I asked if maybe the low dose of pred was the cause but she didn’t think so. I don’t think that was the only reason. I have been a bit sensitive to touch eg get a shooting pain like I’ve been kicked when I’ve just brushed against something or when my husband has touched me. Also, if I overdo it I can feel awful, so tired I can’t think or string a sentence together and that can last into the next day even after a 10 hour sleep. The rheumatologist did check the typical sensitive points on my body and it was pretty uncomfortable. I don’t cope well with stress these days, things that I would have taken in my stride before now make me very anxious. However, I generally sleep well which I don’t think is typical of Fibro?? I will look up the adrenal insufficiency symptoms, thanks again.

[SnazzyD in reply to Birdyloo]

That picture sounds like my poor adrenal function. When I’ve had flares of Fibro over the years on and off, I don’t sleep deeply and wake feeling like had a shallow sleep that I’ve felt almost conscious of. Sleep with low adrenal was like sleeping drugged and waking up drugged. If I over did it with not an awful lot, I felt ill and sometimes so empty with a feeling of doom. For me, Fibro was more vague pain with specific very painful spots and fog.

[SheffieldJane]

I am always wary of the “catch all” Fibromyalgia diagnosis. Read it up properly, it is quite specific with its pain points etc. I think that at 4 mgs , you are more likely to have run into Adrenal Issues. Your body is now having to produce most of its own Cortisol, having had it provided by the steroids in a flat excessive dose. Now it is being asked to produce its own after the function being effectively switched off. This leads to aches and pains, deathly fatigue etc. You may want to test the potential of your own Adrenal system to produce Cortisol via a Synacthen Test at Endocrinology, ask your doctor. A very slow taper is recommended at this time, to give the body time to adjust.

[Birdyloo in reply to SheffieldJane]

Good advice, thank you, I was taken by surprise by a new diagnosis and then found it quite depressing that I seemed to be getting worse instead of better. I will ask for the Synacthen test and then hopefully things will be clearer. I am going slowly, half mg every 5-6 weeks but I am thinking that I will stretch it to 6-8 weeks.