support groups

Hello there sorry to hear of another sufferer I havent heard of a central Southern England group ( I am In the New Forest ) so not far from you This website is my support network but I have joined the PMR North East group and they are very well informed and helpful I think we all get totally fed up with this as first of all everyone tells us how well we look when we feel dreadful !! It also seems to effect people so differently I had very low blood levels with my first bout in 2002 but was in agony When it reoccured in 2008 my blood levels were both in the 30s (ESR and CRP ) and I wasnt in nearly so much pain !! I try and research as much as I can myself both PMR and steroids and check what tests you should have from your Doctor My Doctor is very good on blood tests and happy for me to have them monthly but some Doctors seem to ration them and are only happy with them 6 monthly !! You should have your blood pressure tested reguarly , weight checked ( dont like that !!) ,diabetes Dexa Bone scans Glaucoma and make sure you are on the weekly bone drug and daily Calcium A lot of people have no side effects at all from steroids but in my opinion you have to know what should be checked up on to help yourself I always keep records of my blood tests and steroid doseage so I can check to see how I am going I find the worst times are when I have the feeling of complete exhaustion and cant put one foot in front of the other It seems to come from nowhere If you feel upset dont worry we are all ill !!( even if we dont look it ) and need to rest and look after ourselves accordingly The thing that cheers me up is the fact it is something that can be treated and in theory goes away ( even if mine did come back )!! It would be nice to meet up with others I know there are people in Basingstoke and Portsmouth and perhaps others will join in with your thread Best wishes Mrs G

Hello Sue and sorry to hear that you are feeling low. In answer to your question as to how we all manage to take things in our stride, I think you've found the answer by simply joining this forum! As we all suffer from the same symptoms and worries, we all understand exactly how each other feels, whereas everyone else looks at us, tells us how well we look and wonder why we're complaining! Mrs G has given you some great advice and, as for feeling weepy, both the PMR and the steroids can contribute to this but rest assured that as you reduce the dose and the inflammation subsides, this feeling should pass. Meanwhile, keep in touch with this forum - it's a great place to have a moan and unburden your worries!

Best wishes.

MrsO

Sue

Just a quickie - scroll down and look at PMR - for the new people.

Then contact us in the North East if you would like to.

Hello Sue just wondered how you are getting on ?? I read your first post again and thought how do we long term sufferers cope mentally ?? and my answer has always been it is treatable and feel lucky that steroids help the majority unlike some illnesses I could have where help isnt possible I know some people are unfortunate with problems with steroid side effects but even those people prefer this to being unable to do anything Since January I have had to be a bit of a couch potato because of a flare up but am now feeling a lot better and feeling 15mg is doing its stuff Blood tests this week and Dr next so fingers crossed Do let us know how you are doing and everyone likes the good news but there is always someone here to help on the bad days also Best wishes Mrs G

Hello, Sue, You asked about anti- depressants. Well, we all have our ups and downs. Last November I had a few days when `i felt I was struggling through treacle the whole time and everything seemed such a battle so I went to the Dr and got prescribed citalopram. Looking back, I'm sure it was a delayed reaction to my husband having a heart attack mid October, but, of course, the PMR doesn't help if you are going through a difficult time. I didn't think to mention that to the Dr. - husband I mean, also Dr. got the impression I kept all my troubles to myself (didn't know about this site!!), as when he asked if I talked to my friends about feeling low I said \"No\". Quite honestly, when I see friends I want to forget about PMR not go on about it!! Anyway I tried citalopram for 3 days and then gave up. First it made me feel sick though I'm told this would go off, second it wasn't going to have much effect for 6 or 7 weeks, and finally I did a bit of thinking and thought \"No I'm fed up but give me a sunny day, or a meal out or some other treat and I'll be fine\" - and that's just what happened. But I do have some cheering up strategies when things get gloomy! One includes a bar of very dark plain chocolate. Nuff said!

I think one of the good things this site does to make one feel more positive about PMR is to inform, and that helps one to feel a bit more in control of it all and not quite so dependent on whichever medico one sees. Plus the sharing and letting off steam that is! Sorry to be so wordy.

All the best anyway, green granny

Hello Sue

I don't know if you sre still reading this thread - I'm plodding throuigh lots of them as have just started using the forum. I live near Sherborne in Dorset ans would be interested in joining a local support group. not sure how many others there are from this area on here?

Hope you are feeling better. I felt very down when I started all this a few weeks ago. I think it's a shock to realise, all of a sudden, that you are not indestructible and that, along with the anxieties of whether the diagnosis is correct and what the steroids will do to you etc quite naturally makes you feel down. I am fluctuating between feeling upbeat and determined to exercise more, eat less, drink less and generally beat the disease and the steroids - and feeling fed-up, sitting on the sofa and doing the opposite!

All the best

Beev

Hang on in there - the new National Charity PMR-GCA UK will be launched on Wednesday 10th March. (Don't ask its be invitation only).

Its aims are to set up support groups (large or small) all over the UK. Well that is one of the aims, the other being Research into cause and cure.

You can always visit either

www.pmr-gca-org.uk Tayside Support Group website

or

www.pmr-gca-northeast.org.uk North East Region Support Groups website

for up to date information, a list of current support groups, some of which operate an email helpline and a National Website will be coming on line soon.

And none of the above would have happened except for people who met on Patient Experience - yes - this site. And then discovered that there were three other groups in existence and a Professor with a dream.

So Sue and Beev: you may well be the ones whose job it is to START the support group in your area! If you read the history on the NE website you will see MrsK and some other ladies were the impetus for the whole idea of joined up support.

But this forum is here 24/7 (to use that horrid expression) and the regular members here are mines of information about experiences with PMR - and the real plus point is you can have a real moan or read uplifting comments even if you feel so rubbish you couldn't get to the bottom of the garden path never mind 10 miles down the road to the group meeting!

A lot of the depression is about the pain you are in for so much of the time, the helplessness you feel and the reaction to your friends (for want of another word) and family not having a clue what you are going through and telling you to pull yourself together. No-one here is likely to come out with the last comment and we've all been there!

Thanks to MrsK and her friends and a lot of hard work on their part we are about to have a platform to arm us with knowledge. And knowledge is POWER.

Three cheers for those ladies!!!!!! Setting up a charity is a mammoth task - well done you!

Eileen