Suspected gca with fibromyalgia

I am 37 and have been diagnosed with fibromyalgia for almost 3 years.

The past week I have had extreme trouble with my eyes, including trouble focusing, pains behind eyes, squinting, difficulty reading, sensitivity to lights, constant headache - so I went to my optician. My vision has decreased since last test in January.

He was concerned and spoke to a specialist who asked if I had an achy jaw and tender scalp recently - YES! I put the jaw thing down to fibro muscle and joint ache and the tender scalp down to headaches so hadn't connected them altogether.

There are a lot of GCA and PMR symptoms which are similar to fibro.

I have been advised to have an urgent blood test for GCA which is today, however I would like to find out if GCA and fibro are related or if it's PMR, and I am too young for GCA?

I am slightly worried. Any advise would be amazing please x

9 Replies

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  • I have also lost a lot of weight over the last week or so. I'm now barely 8stone and my clothes are hanging off me 😔

  • Hello Quartzpendulum, and welcome - you have come to the right place if you do, in fact, have GCA/Temporal Arteritis, and with the symptoms you describe it certainly does sound a real possibility. I experienced all the symptoms you mention, including rapid weight loss of a stone in 3.5 weeks.

    At 37 you certainly aren't too young to be so diagnosed; in fact another person of the same age posted similarly on this forum just a few weeks ago.

    If your GP believes that you may have GCA, he should refer you to a consultant rheumatologist immediately, prescribing high dose steroids whilst awaiting the appointment. This is necessary in order to protect your eyesight which is at risk from the untreated inflammation. If GCA is then ruled out, the steroids can be stopped. You should not wait for the blood test results, and anyway 1 in 5 patients diagnosed with PMR/GCA do not present with raised markers, plus those markers can rise due to many other causes. If you are unable to see you GP today, if it was me I would be hot-footing it to A&E. Good luck and do come back and let us know how you get on.

  • Thank you Celtic. I am able to get my results tomorrow which I already feel quite nervous about. I will ask about rheumatologist referral again. I have mentioned this a few times previous because of fibro but she has never put forward my request.

    I need to sit tight now and wait for those results and take it from there.

    I'll let you know how it goes and thanks so much for your reply.

  • I do appreciate how nervous you are feeling but, knowing what I now know about GCA, if I was in your shoes I would not want to risk my eyesight and would get an expert opinion today, not wait until tomorrow for blood test results which, in any case, could prove non-specific. You have already mentioned "extreme trouble with my eyes, including trouble focusing, pains behind eyes". In the case of GCA affecting the temporal artery with the potential to block the blood supply to the optic nerve causing sudden loss of eyesight, there is no time to lose in initiating the necessary treatment to avoid such a tragic and avoidable outcome. You would be wise to get an expert examination and opinion today. Whereabouts in the UK are you, just in case someone may be able to guide you in the direction of an expert?

  • All the symptoms you describe are consistent with GCA. Is your GP sure it was fibromyalgia? There are a lot of overlaps between PMR and fibromyalgia which could easily confuse a GP (and a rheumy if it comes to that!) but one basic difference is that PMR responds to pred and fibromyalgia doesn't. You being young I suspect most GPs would plump for fibro.

    There is no "blood test for GCA" - in 80% of patients the ESR and CRP are raised which are indicators of inflammation somewhere in the body. The lower levels are more common in younger patients. But there are a lot of rheumies who will not accept that people under 50 can have GCA - yes they can, it's unusual but documented - or that you can have it with normal bloods - yes you can, and it is in the specialist literature.

    Who was the expert your optician consulted? Mine in Scotland would have called the hospital and warned them a patient was on their way, written a letter and sent them off immediately. It's a shame your optician didn't do something similar.

    Either way - you do need to see a specialist as an emergency, not just a referral, that could take a long time and suspected GCA should always be treated as a medical emergency, just like a stroke or heart attack. Maybe since you have predominantly eye problems an eye specialist might be better but a rheumy would be the usual first stop. But your GP needs to act swiftly - phoning the selected specialist immediately.

    Where are you? Some hospitals already have fast-track systems so you are seen quickly.

  • I'm on my way to Manchester Royal eye hospital a&e department now. Thank you for your comments and urgency to get treated. I will let you know what the outcome is. Thank you for your support x

  • You do know there is a northwest charity and support network?

    pmrgcasupport.co.uk/

    and good luck.

  • There are crossovers in autoimmune diseases and because symptoms are so different from person to person hard to diagnose. 37 is young but with such head pain I would not hesitate to see an RA if you can get in or an ophthalmologist or start taking 60 mg of prednisone with food. If it is Giant Cell Arteris you should have pain reduction fast and save vision. Don't panic but get answers fast.

  • Update.

    I went to Manchester Royal infirmary and had blood tests carried out to see if I had any infection markers which they were suspecting meningitis. I didn't really understand why as I've not been ill in that respect. Anyway all tests came back fine which is good but no further answers on GCA.

    Saw my GP again yesterday following up and she has suggested a referral to a neurologist on the suspicion of MS.

    As you can imagine these two assumed diagnosis' are literally scaring the hell out of me and I simply have no idea what is wrong expect I'm in excruciating pain and still have vision problems and this bloomin headache which has lasted almost two weeks.

    I'm worn out and worried sick 😔

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