Polymyalgia

[Shandon1]

Not able to deal with the pain. Waiting to have it confirmed on Monday week

[suzieh]

I had terrible pains too but if you have PMR and you take the prescribed steroids hopefully they will go very quickly. Mine went within a few hours and I got a great boost of feeling great for a while - relief and energy all mixed up! Now, in my 2 nd year of steroids I feel ok most of the time and am learning how to reduce the steroids slowly - hopefully to get off them eventually

This forum is full of helpful advice and support. I hope you start to feel better soon.

[Shandon1]

Thanks for reply. I only had the range of tests last Monday, but been in bad pain for weeks. I am not able to stay in bed and have to get up every hour or so. Painkillers not helping much, paracetemol and ibuprofen. Really pleased I found this site.

[1Purplecrow in reply to Shandon1]

Dubliner1, remember being in your situation, feeling like I was just hanging on by my fingernails.

This forum is a lifeline for practical support and for basic human understanding of your experience . The forum administrator, volunteers, and members will be here for you almost 24-7, and will virtually hold your hand while you get through this worst part.

While you wait, do whatever you can to be as comfortable as possible, and trust that pain relief is coming. You will feel better.

[Shandon1 in reply to 1Purplecrow]

Thanks Purplecrow (great name). This site found yesterday has been a great encouragement. I am learning to deal with the pain and how to space myself!

[1Purplecrow in reply to Shandon1]

Its 2 AM where I live, I'm having one of my sleep less nites, (just to show you the 24 hour availability of people who "get" what you're going through).

Gonna get a cup of warm milk, with sweet and vanilla, and try to convince myself it's time to go back to bed. Here for you.

[trish29]

Hi Dubliner1 so sorry you are in so much pain. Are you on Steroids at the moment ? If you are then maybe the dose isn't enough . I am now on my 4th week of getting over a PMR Flare Up/ Virus and haven't been able to get my pain level right and I'm also taking Solpadol/ Ibuprofen . I have been waiting for advice from a pain clinic and that's just not happening .. I have been giving myself rest when I need it because I can't get around the house very well.. I expect you find the pain tiring and draining. I hope to start Acupuncture but need to get over some of the exhaustion first .. Good Luck and I hope your pain eases ....trish29

[Shandon1 in reply to trish29]

I am not on anything at the moment. Awaiting diagnosis on Monday week. But fairly sure it's pmr. Went from pretty full health to over riding pain and little proper sleep. This site is very encouraging, thanks trish29!

[Celtic PMRGCAuk volunteer]

Hello Dubliner

It's a pity if your GP suspected Polymyalgia that he didn't start you on a trial dose of steroids. If the diagnosis turned out to be something other than PMR then there isn't any problem coming off the steroids after just a short while. If it does turn out to be PMR, then his fast intervention with steroids would have saved you the extra days of pain. For your night times, try sleeping on top of one duvet and covered by another - I was undiagnosed for almost a year and that was the only way I found allowed me to lie for any length of time on each painful hip, obviously still having to roll off the bed (couldn' turn over) to change from one side to the other. Meanwhile, don't wait until next week but ring the surgery and ask for your results - if a problem has been found the results should be back in a couple of days. All good wishes and do keep in touch now that you've found us.

[Shandon1]

I was seeing my doctor for weeks with only painkillers. It was only when my weight suddenly dropped that I was referred to a geriatrician. She admits is is quite possibly pmr but all the other tests will have to be carried out. Monday week for results. I have been through 6 weeks of agony hell. I found a site on pmr and it answered nearly all my concerns. If it's not pmr I am in big trouble...

Thanks Celtic

[Pipistrelle]

I would go back to your GP and ask if you can be put on low dose steroids as a trial because you have already had the tests, and the results are being tabulated, so being on steroids will not now affect the results. It is easy to come off after a week if needed. I would ask this s a matter of urgency because the pain of PMR can be enormous. One of the confirmations of the condition is actually quick pain relief, sometimes in just hours, from low dose steroids (only 12-15mg a day is needed to start). I think you'll need to be your own advocate with your GP -- I would print out and take in this: rheumatology.org.uk/include...

I would try to do a daily walk or two, as briskly as you can, and if you have access, try a gentle swim. It may seem hard at first, but exercise can actually help the pain. I found a swim actually cleared the pain for hours afterwards when I was only on ibuprofen initially.

If the steroids quickly resolve your pain you will know you almost certainly have PMR.

Are you in Dublin? If so and your GP won't do anything more for a week, you might consider paying to attend emergency at someplace like the Blackrock Clinic or Beacon Hospital and see a consultant and see if a specialist will start you on steroids. I'd again take the document attached and also indicate that you've had all the tests and cannot stand the pain while waiting. I was lucky in that ibuprofen managed most of my initial pain while I waited to see a rheumatologist and also the rheumy had an earlier opening so I cut about 6 weeks off my wait. I'd have found it hard to wait a long time with high pain.

[Shandon1 in reply to Pipistrelle]

Have asked my doctor for some steroids and will see how it goes. I am in London. Thanks for all the advice!

[Shandon1 in reply to Pipistrelle]

I have been in touch with my GP and I am on the steroids from tomorrow. I am very relieved. Thanks for the encouragement!

[Pipistrelle]

PS I would think you need to see a rheumatologist more than a geriatrician? I also started to have almost daily weight loss which stabilised as soon as I went on steroids.

[optimist-ok]

Hi Dubliner1. As with the other replies I was in agony (6weeks) before being diagnosed with PMR & GCA. Immediately I had steroid medication things improved. Its a very up & down process but there is a light at the end of the tunnel! Pester for help if you have to. Good luck.

[Shandon1 in reply to optimist-ok]

Thanks!

[jinasc]

Dubliner

As it was developed in Medieval times by Monks as a medicine it will ease the pain. Small brandy (half a measure) preferably Remy Martin or a good one.

Paracetemol and Ibuprofen are like eating smarties when you have PMR, they won't touch the pain. Be careful with both as well.

There is no good reason for your GP not to give you 12-15mg of steroids for two weeks. As long as it is not longer than two weeks, you have no problems with stopping the steroids. Over two weeks then you cannot stop them abruptly.

They should work within 72 hours if it is PMR. If they don't work then the likelihood is it is not PMR.

[suzieh]

I found swimming awful ar first, still find it difficult as most of my problems were in my arms and shoulders! However i can do most Pilate exercises and find gentle yoga is good once you have the pain under control try and join a class - tell the instructor you have Pmr/ on steroids and they will help you. It is good to get out of the house to do something focused on good health and suppleness. Sometimes I am very tired afterwards but I feel healthier for it mentally and physically. The key is to find what you can do. I have also found the anti inflammatory diet very good. (Dr Tim irvings ) hard to do all the time but worth it if you can most of the time.

[Shandon1]

All good ideas, thanks

[Whittlesey]

Hi Polymaglgia, hopefully ibuprofren for the pain, until you get a diagnosis -- may help. I also found that ginger for the dizziness, if you have dizziness, helped. The steroids do reduce the pain and make the whole situation, better. Agree with Suzieh, reducing the steroids, is important, as the illness begins to subside. After time, on the steroids, secondary illnesses can develop. Wish you well, and that you are painfree and in good health. all my best, Whittlesey

[Shandon1]

Thanks