Update as per Gp visit

[Craftnut68]

Hi craftnut 68 here. Well was at GP's today and had 45 min consultation. He assures me that I do not have GCA as I display no other symptoms of it other than having lost a bit of peripheral vision which has been put down as a small stroke. My esr levels have been apparently running abt 35 for well over a year so upshot was I have to stay on 10mg prednisolone for next year before tapering down. My big concern is a tingly feeling on the back of my head which I have had for a long long time well before being diagnosed with PMR which my Gp could offer no explanation for, I'm very uptight when that feeling is there but ok when it's not its very strange. Also on taking bp readings as I told him I got light headed when I moved he took readings both when I was lying down and after standing up. When I stood up bp was extremely low so he told me I had postural hypotension and I had to be careful. So not a lot further forward. I was diagnosed with PMR at beginning of November and Gp today said he thinks I have fybromyalgia too

[Celtic PMRGCAuk volunteer]

Craftnut, perhaps the hypotension itself is the cause of the tingly feeling on the back of your head? As far as the ESR result is concerned, do ask your GP to arrange a CRP blood test as it is considered to be a more reliable marker of inflammation than the ESR. What a bummer if you do actually have Fibromyalgia as well - unfortunately, it can be difficult to diagnose as there is no blood test available but usually presents as tender points on areas of the body when pressed. Fibromyalgia doesn't respond to steroids but treatment with a low dose antidepressant can help. If you are not already under a rheumatologist then do ask your GP to refer you, if only for peace of mind.

[Craftnut68 in reply to Celtic]

Thanks Celtic my Gp put me on a low dose antidepressan today something called prothiaden. I know fybromyalgia doesn't respond to steroids so I'll just have to stick with the pain killers too. It's the tingly feeling on head that upsets me that and the feeling of going to faint when I stand up after sitting for a little while it's hot my nerves shot to pieces

[HeronNS in reply to Craftnut68]

Where do you live, Craftnut? Apparently bioflex laser light therapy has been shown in studies to help fibromyalgia, unlike PMR where the benefits are anecdotal, no controlled studies having been done yet. (I'm getting it for PMR and finding it helpful.) But Bioflex not available everywhere. Started in Canada, widely available in US and also available in some other countries, including UK, although not as many clinics yet. bioflexlaser.com/

[Craftnut68]

Thanks Heron I live in livingston, about 13 miles from Edinburgh I'll look at the website link you suggested

[HeronNS in reply to Craftnut68]

I looked at the website (a bit hard to navigate as they have changed it and there a few glitches). As far as I can tell there are no clinics in Scotland, but the listings do not appear to be complete. However there has been a bit of a buzz about PEMF and iMRS machines. Here is a study about it specifically regarding fibromyalgia, which looks promising, and this treatment may be more widely available than Bioflex:

ncbi.nlm.nih.gov/pmc/articl...

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Hi Craftnut,

Glad to hear that you managed to get a face to face appt with your GP and discuss things.

What exactly led them to diagnose you with fibromyalgia and are they sure that the symptoms aren't PMR? I was offered prothiaden ( Dolusepin ) at one point as they thought I had idiopathic facial pain and thankfully never took it. It might be worthwhile having a look online at what patients who are on it say about the side effects as they can be pretty nasty and it's a very difficult drug to wean yourself off.

Did your GP check your BP in both arms to see if there was a difference as well as doing erect and supine BP's?

[Craftnut68]

Yes Gp checked bp in both arms. My neck, shoulder, hip pains all responded to prednisolone within couple of days as did arm pains and stiffness I could hardly comb hair and needed help with dressing and getting in and out of bed hence PMR. I have had pain in shoulder blades and in spine which have not responded also pain round side so he thought these may be due to fybromyalgia. I had prothiaden about ten years ago for idiopathic facial pain so I know what they are like . I have been on pregabalin for phantom tooth pain and palatal myoclonus for a few months so he asked if I would be willing to change back to prothiaden as I said I was very down by it all so I'm only going on small dose of 25mg at night and see how it goes.

[PMRpro Ambassador in reply to Craftnut68]

The pain I have in shoulder blades and ribs is due to referred pain from myofascial pain syndrome and the resulting spasmed back muscles pinch nerves. They never responded fully to oral pred. It took pred and muscle relaxant injections into the back muscles that were as hard as boards to really settle that down but in the early days of PMR I found Bowen therapy helped those other bits a lot - I had PMR without being treated with pred so any removal of pain was a help. That wasn't out of choice I hasten to add.

A diagnosis of fibromyalgia requires fulfilling criteria, not just saying there is pain that isn't responding so it must be fibro - and to be honest I'm far from sure the sort of pain you describe is fibro. Polkadotcom may be able to help there - she has both.

If the tingling is during the dizzy spells and you have postural hypotension your GP could order a 24-hour Holter BP monitor which measures your BP every 1/2 hour, every hour at night, and really shows what your BP does through the day. It may be it is going up and down a lot - and I had strange tingling pain in the back of my head recently - low BP spells it seems. In the meantime - stand up slowly and don't turn you head suddenly until you feel steady. It's a horrid feeling I know.

[Craftnut68 in reply to PMRpro]

Thanks PMRpro I do stand up VERY slowly and wait a few moments before moving off and have very quickly learned not to turn or move my head quickly in order to avoid the light headed feeling and as you say it is a horrid feeling that you are going to faint

[maria40]

When I had a flare of GCA in June 2014 one of the symptoms which bothered e most was a tingling at the back of my head . GP disregarded it, as did rheumatologist and only a neurologist took it seriously as a symptom of GCA. I think you should persist and pester until they do consider it. Mine has lessened to almost nil now but was very disturbing at the time. Also my ESR has never been below 29 - I have had PMR for 16 yrs now - and runs at an average of 30+ ; GP told me that was acceptable for my age (75). Do hope you mange to get everything settled.

[Craftnut68]

Thanks Maria I'm certain I do have GCA as well as the PMR as I get pain in back of my neck and pains round my jaw along with the pains and tingling on the back of my head my esr was 37 last week which my GP said was acceptable for my age (almost 68). Gp said he didn't think I had gca and biopsy had proved negative but I'm not so sure sometimes I also get a stabbing feeling which is quite distressing

[Abbeynan82]

I’d be interested to know how one knows Fybromyalgia is also present? I have had a lot of pain so back up to 15mg and some relief. Very sleepy all the time. Don’t sleep well, always uncomfortable.