I live in Australia on the Gold Coast which is located in the state of Queensland. I was diagnosed with PMR last December at age 51. I
started on 15mg Prednisolene and now down to 8mg.
I am feeling a little isolated and daunted with PMR because I have not been able to locate either an Australian Internet Support Group or A Face To Face Support Group in my city so I have been battling this illness alone. If anyone from Australia could tell me if they get local support I'd be very much appreciative.
I have learnt a little from this site already, I distinguish painful days and pain free days by calling them good or bad days, now I know from this site that a bad day is a "flare up" which is a very apt description because I get a hot sensation in my legs and it is causes me discomfort rather than pain. I have also read that some people get pains in their hands, thank God I don't, I have it in the back, upper arms and shoulder but not the hands.
I really feel in the dark with this illness, I am even wondering if it is PMR. My General Practitioner (local doctor) diagnosed it as Fibromyalgia and my Rheumatologist diagnosed it as PMR. I have an appointment for a second opinion but the earliest I could get for that appointment is October!
Also I have noticed that on this site, in America the Arthritis Foundation recognise both PMR and Fibromyalgia as Arthritic based yet in Australia is seems only Fibromyalgia is recognised by the Arthritis Foundation. Is this correct?
Thanks to anyone who can offer me any advice.
Hi Leanne, Yep, we're all lumped in with arthritis because no one really knows what PMR is. I am sure 100% about one thing based on the experiences of people on this forum: If prednisone relieves the pain it is PMR. If it does not, it is not PMR. It might be fibro or something else. Some doctors depend on an elevated sed rate to determine if it is PMR, but some folks can have PMR andbe in major pain and not have high sed rates, so you can't go by that.
Some think it's inflammation of blood vessels, others think tendons and connective tissue. All they know is it is one of those auto immune things where your body attacks itself. Right now, my left shoulder is stabbing itself to death.
I just thought of another thing I know for a fact. Medical books tell you it's a disease of people over 50, median age 70...and it will go away in 1 to 2 years. NOT!!!!!! That's my input, for what it's worth. Nice to meet you, Leanne
I can't believe you have to wait until October. That's terrible
Hi BetsyLeanne, I have had the most painful shoulder for over a month that just will not get better. I was beginning to suspect it was an injury and not the PMR. I will research the tendonitits and see what if anything will help.
Also I sweat excessively on my head and face. It's maddening in the summertime. I had thought it was worse on the prednisone, but didn't really know that was a side effect. Thanks for your post and have a great Easter weekend.
Hi Leanne, I too am Australian. We live in Horsham, Victoria, about half way between Melbourne & Adelaide. There does not appear to be any support here for PMR or many people who have even heard of it!
Your frustration with this unknown illness is very understandable. Most of us on this site, including me, had no knowledge of PMR before diagnosis. I got some info from the Better Health web site but luckily I found this forum and it is the best place to get a real grip on what does and can happen.
I too got a second opinion mainly because I felt so ill how could it just be arthritis? The Pred did not kick in until about 3 weeks after I was taking it and this also seems to be abnormal but when it did it was wonderful to get relief at last!
I was 60 (now 62) when diagnosed in early 2006 after months of pain, misery, endless blood tests, Sed rate and white cell count very high, scans and xrays and a bone marrow biopsy to exclude leukemia. I was put on 10mg Pred and am still on this dosage. My last blood sed rate was normal so I expect to start reducing when I see my Physician this month. And Yep! Sure can relate to those two the sweating and weight gain.Grrrrr! The other Pred side effects you will read about on this forum are part of the price we pay for Pain relief and Quality of Life.
With the hot & humid weather in Queensland it is going to be tough for you with the sweating ect. I hav'nt found an easy way to disguise this maybe someone might be able to help?
Betsy is usually our "Funny Girl" I love reading her posts she usually has a wicked sense of humour. Betsy you have lighten up many a day for me and I wish I could give you a gentle hug and make that awful shoulder pain go away.
Hi Lyn
I don't believe it - you girls may be able to help me or shed some light on what my 6yo daughter is going through AND you are from Australia!!
I am from Australia too and have a 6yo daughter who is undiagnosed and I have been haunting this site looking for answers or similar stories for a short time.
She has suspected some sort of Periodic Fever Syndrome, JRA or Something.
A very rough description of her symptoms are; spiking fevers up to 41, headaches, PAIN that comes in sharp stabs or waves in numerous parts of ehr body - feet, knees, legs, arms. hands, fingers, back, shoulder etc. She has had MRI and bone scans showing hot spots and inflammation that 'moves'. Occasional night sweats, lots of Nausea, insomnia.
Her bloods show nothing in particular but the inflammatory indicators go up and down.
She has had 2 bone marrow aspirations that ruled out leukemia.
Her painful spots are not swollen, sometimes they may be slightly red.
No rash - except for once during a 3 hour bout of sever 'labour like' pains over numerous spots on her body - then she had a rash on her face (as you would!)
She is exhausted, can't handle a normal 6 yo day almost always.
Our doctors are getting closer - about to table her at a conference of paed rheumys to decide on her best treatment.
We have great doctors. Visited a very unusual naturopath last week who claimed she has Chronic Fatigue Syndrome. At first I was ready to give up on him until I looked it up and she appears to have ALL the symptoms! Will report this to our paed rheumy soon....
Yes - she responds to prednisilone better than anything else. Has so far been on pred, nurofen, indmethacin, naprosen, zantac etc (and Pain Stop).
As you can imagine I am becoming quite desparate to find the right answers and the best long term treatment for her asap!
What do you think - is this similar to what you have - your posts sound very similar to our daughters condition and I have not thought of this PMR until now (our docs may have)
Would love to hear from you both. Seeing as there are no good Aussie arthritis sites -this one seems pretty good in providing experienced info and support.
Nelly
Hi Nelly, Wow your little girl is certainly having a very bad time. I would hope the usual Glandular Fever, Ross River Virus, Barram State Forest Virus ect, have been tested? I had not heard of the many virus tests that I had, apparently there are hundreds!!
You mentioned a rash on the face... When I was trying to get answers and searching the internet ,I wish I could remember what it was, but it mentioned a butterfly rash on the face, lasting I think for several hours. I did'nt have this symptom but maybe your daughter did? Have you told the Dr this? Sometimes we forget or dismiss what we see as trivial, it could be important.
I am plucking at straws here. There are so many unexplained illnesses and the frustration of not being able to know exactly what you are dealing with can be the most horrible, helpless feeling as I am sure you know all about!
The symptoms you describe are very similar to PMR and the fact that she responds to Pred.... maybe??? Stranger things have happened. Those of us with PMR are supossed to be over 70 and PMR last for 1 to 2 years! on most info sites. Not true! There is a lot of conflicting information about. We have learnt from this site that there is a lack of research being done, PMR is not diagnosed from a simple blood test or even a series of tests, only ellimination of other illnesses. We are all similar in somethings but do vary in others. Hope I have got this right but this is how I see it.
Another thing I just thought of... does Chronic Fatigue respond to Pred? and at what dosage she gets "no pain".
I do hope you get some answers for your little girl really soon, she is lucky to have such a caring mother.
Hopefully there are non Aussies too who will respond to you. All the info you can get from this great site can only be of help and to know others can relate to your pain.
LOL give your baby girl a hug from me xx
Lyn,
Thanks for your reply - yep ruled out lots of viruses etc - and apparnaly there are hundreds - that can throw off false negatives too! She still has blood cultures being tested that can take months for results to show. She has had STACKS of bloods done.
The pred works great - but she will still have dull pains - not No pain, but she can at least function while on it, depsite feeling sick. Don't know if pred works with chronic fatigue - it would have to give you a boost though wouldn't it? will ask my rheumy soon...
Yes it is very frustrating especially not being able to help my little girl when she asks me to make it go away!! how depressing! But I am trying to stay really positive for her...
This 'caring' Mum is getting tired but trying to look after myself as she does really need me and I am starting to realise I need to be fit and healthy to cope (which I am not!).
And yes, I welcome all, not just Aussies. We all need all the help and encouragement we can get!
So, nice to meet you, thanks for the hugs! Hope your health keeps improving!
Nelly
(and yes - I took a photo of the face rash)
LynM and Nelly,