Flare up after going to hairdessers

[Daisydarling]

Hi everyone for about ten years I have been going to doctors with face neck shoulder groin pain and general weakness and fatigue (never had headaches) They did a xray of my neck and said mild arthritis.This has been flaring up all these years,but in the last year getting worse with stiffness (walking like a clockwork soldier!) In June I had my hair done and I told the hairdresser that my head was tender (but they love head massage) Since then I have had pain in left side of my head and face. Very bad weakness down my left arm. Saw GP and my esr and crp were normal. She put me on 5mg pred (two days worth) and after taking it the first day the pain had gone.My temporal artery is still tender to touch but no pain anywhere except shoulder a bit.I am 69 years old what do you think I ought to do now? do you think I should be on a very low dose pred or wait until the next flare up.This has been the worse one yet lasting two months. I have been reading all the posts and am so glad I found this site.

[DorsetLady PMRGCAuk volunteer]

Hi Lolasmummy,

Certainly sounds as if it could be PMR, as you well know not everybody gets the classic symptoms (I had a few, but not all) and lots of people don't have raised blood markers. So unfortunately the GPs rule out PMR maybe too quickly.

Your reaction to the Pred would indicate an inflammation problem, but unfortunately it does mask most pains, so that again makes a definite diagnosis difficult. What has your GP suggested, or doesn't she know. Trouble is, they seem to have a love hate relationship with Pred, which doesn't help the patient.

If you've felt much better on the Pred, then a small dose is not going to create anything much in side effects, so why not discuss the option of staying on it for a couple of weeks and see if things improve more with GP. You may be lucky in that such a small dose is enough to stop things getting worse. Do hope so.

[Daisydarling in reply to DorsetLady]

Thank you so much,I will (hopefully )try and get an appointment next week.Forgot to mention I have had eye socket aching and ear and jaw pain (still nagging) So pleased to have a bit more knowledge now although still a lot to learn.

[DorsetLady PMRGCAuk volunteer in reply to Daisydarling]

When you go for appt, make sure you have made a note of all your symptoms, and try and impress upon the GP that you have real concerns if it being PMR/GCA. If possible, take someone with you, that usually manages to galvanise the GPs attention. Shouldn't need to, but it does!

Good luck.

[Daisydarling]

Yes I will, thank you so much.

[Daisydarling]

Hi Dorset Lady, I have not been able to see my usual GP next week and can't face going through all of it with a locum (felt depressed lately) Would you wait as I am not in a lot of pain at the moment, just mild temple, face and shoulder pain, but I would like to see the specialist. I am worried that because my levels were normal he will just not treat me. Should I ask the locum for pred or wait until I get an appointment with specialist? I have no faith in my doctors as they have let this go on to long and now I have read all these posts and realise it they have let me down very badly.I read on here that stress can bring it on. With a big family there is always stress! My daughter came back from Egypt where she contracted bacterial enderciditis a bacterial infection that destroyed her heart valve. She saw so many doctors but they let her down, until she called the emergency doctor out and he noticed red splinter like marks in her nails and admitted her. Long story short she was on life support for months, she had a new valve and is on warfarin.

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[PMRpro Ambassador in reply to Daisydarling]

Often a locum sees things with new eyes and there are several people on the forums who have locums to thank for a diagnosis, referral and proper treatment - as your daughter experienced. Write all your symptoms/concerns down in peace and quiet at home and hand it over, explaining just that it feels too much to go through it yet again and your memory is dodgy. The depression may well be part of PMR/GCA, it is a listed symptom.

It often does require some persistence - it took me 5 years, a rather blood-test fixated GP and 2 unhelpful rheumies before I worked out for myself what it was. Then I was lucky to find a different GP who had rarely been there in previous years, always on maty leave and only part time anyway, but who recognised PMR and the response to pred immediately. Now I have no such problems and if I need it have almost instant access to the local head of the medical department - whose special interest is GCA and PMR and who provides me with print outs of new publications.

[Daisydarling]

Thank you, yes it's seems a long journey doesn't it! frustrating as well when they don't recognise symptoms.