headhake | Arthritis Information

The usual pains with pmr are bilateral, meaning both sides, so I think your pmr is just being difficult! It does that. Mild headache probably caused by worry or tension. I got severe eye pain after three months on 15mg pred which was totally stress related - my rheumy took me off the steroids (which I was getting hysterical about) and the eye pain disappeared immediately. The steroids, and the dosage, affect everyone differently so it could just be that. Severe headaches can be a warning that the blood vessels in your head are affected which can lead to a very nasty complication called giant cell arteritis - so keep tabs on it; if it gets worse or wont go suggest skoot back to your doctor. Keep smiling, good luck Just read your other entries.. you're on 40mg pred? That's a high dose for pmr so I think your doctor's doing the right thing by getting you to a rheumatologist. There's a really good British site - just add the dots to get you there - www patient co uk and go on the Patient Experience for polymyalgia. You'll find masses of info from other people there. It's really helpful.

After 14months my diagnosis is still under question. My doctor thinks it might evolve into Lupus so I'm forever reading up on that too. My rheumy has tested me for tons of things and ruling out some nasties but we're all none the wiser! I was 51 when diagnosed - youngish for pmr.

Thanks for the info will look into this site.

Feel very isolated here in Bamgladesh and on top of it drugs here are not always what they seem to be! I am 55, but is seems not that unusal reading through the messages. And I was pretty sick in June with a bad flue and never felt quite right ever since.

Amities

veronique

Hi!

I read from your exsperiences that usually pain with polymyalgia is bilateral, mine is mostly on my left, is it normal with pmr?

thanks

veroB

Hi Veronique,

my pain was not bi lateral either. It was first in Left Shoulder, then in Right Shoulder only, then in Left mid section. My pain was intense for about 30-45 minutes then would slowly fade to just bearable. Then anytime later start again, maybe also have nausea from the pain and sweating all over as well !

What is normal for PMR? There is nothing normal about PMR!!! There is only the hope that it will one day go and the Pred has not left too many , other health issues....

Hope you have less pain? When the Pred kicks in, you should feel .. back to normal but with some aches, not this dibilating pain.

Hugs Lyn

Hi there

Another useful site, located in the UK,

www.pmr-gca-northeast.org.uk

It also contains Guidelines issued by the British Society of Rheumatologists in June 2009.

Let us know what you think and if it was helpful please. mrs UK2009-12-03 15:35:14Thanks for the feed back, do not feel so isolated.

The predn, really only starts working around 2p.m. and i take it 7a.m. it does make me feel a bit more normal, pain less but still bad in neck, like somebody is turning a vise round, still feeling sick and sweating, could it be medication as well. Have a very smaal headache most of the time just at the back of my eye. And I am so very tired most of the time.

Mind you, can sleep better, do not feel like screaming everytime a turn around.

Apart from paracetamol I do not take anything else can you take any thing else stronger with pred?

Will get to see specialist in Singapoore beginning of January.

Thanks wverybody

veronique

Thanks for info.

The site pmr-gca helpfull only in a way that tell me that there is not much you can do about this PMR. But not being alone does help.

Another thought, read that sometime hormone unbalance can cause the same sort of pains caused by PMR. Anybody heard of that?

thanks

Veronique

Veronique, would suggest you keep a diary so when you see the specialist you don't forget things that may be important. The thing with pmr is the diagnosis is only a clinical one; there is no one blood test to confirm it. You may possibly have something else. I say this because: a friend of mine, aged 65, was diag with pmr first by doctor then by rheumatologist, kept on high dose of steroids followed my methotraxate, was in severe pain until at least midday, the pain for went on for months before finally going into A&E (emergency) as the pain was so severe and she could no longer pee. At this point she saw a different rheumatologist who straight away said it's not pmr; she had an MRI scan and they found a bulging disc in her lower spine. She then had emergency surgery as the nerves were trapped and is now well on her way to recovery. Her original symptons were fairly textbook pmr! It does mimic other things.

Long term steroid use is quite harmful and if they're not working on this dose this needs addressing. Can you talk to your doctor again in Bangladesh before you see the consultant? If not, January is only weeks away so good luck.

Wallis

Thanks a lot for the info, will certainly ask the specialist in Singpore to investigate this.

Trying to get to Singapore by the end of the week as I am supposed to be going to Cambodia with my husband on 20th December to join our children from Europe, and I am too worried to wait until January.

Thanks so very much for the listening ears and kind heart

Have copied Veronique's next posting to here as it might help others browsing:

Just back from Singapour, where I had many test. It was dicided that I did not have polymyalgia as my sedimentation was too low 16. The Rheum. thinks I have Chronic fatigue syndrom. It feels like the same symptoms except that you cannot get giant cell artitis. Off the steroids and taking very small dose of antidepressant and pain killer. Not feeling that much better but I have the odd day when I do.

Did anybody has had the sme experience with theis diagnostic? VeronB

What a different diagnosis! And why did the first doc put her on such a high pred dose? Anyway, good for you Veronique, just keep reading up and looking on decent medical sites for more clues. I'm on diclofenac and low dose antidepressant (10mg) and getting by on that (the anti-d helps relax muscles and stops me getting soooo stressed!) Happy Christmas readers, may next year be kind to us all....

Wallis x

It was dicided that I did not have polymyalgia as my sedimentation was too low 16.

was the sed rate test done before you started the steroids or after you had been on them?

reason i ask is if you were already on the pred then you would expect it to be low whilst the pred is in your system. therefore not an accurate result as such. this is according to my rheumy anyway.

Yes the test was done as well before pred and it was actually 18 so very slightly higher, after pred 16.Mind you I feel it still could be Polymylagia myself but I am happy to be off the steroid and can cope most days with pain killers, very low dosage of anti depressent and muscle relaxence drug.

Thanks

Thanks for all the help, went to Singapour and after lots of more tests the rhumu decided that I had CFS Chronic fatigue syndrome. It seems to me that same symtoms as PR but I did not have high sedimentation. I was told though that it is not a rhumatologist that I should see but an imunotologist so reading all the email in this forum, I just wonder if people should just try to see one of these instead of Rhumu?
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