You wonderful people have given me hope!

BettyE. Good morning !Panic attacks :roll: :cry: They are really frightening !....I thought I was going to die ! But I was told, to breathe from the \"tummy\"....in slowly and then breathe out, slowly. Try to lie down and relax. I know it is hard, but it works. Panic attacks are caused by adrenaline going into overdrive !....Like when one is faced by a roaring lion....so, the adrenalin sets in to make us run.....fast !...and the heart beet is horrible and terrible chest pain !.... Only last week I was rushed to A&E, and they told me it was a panic attack :roll: :?: I do not remember having paniched at anything ! ! :shock: But then my daughter,explained about the adrenalin....So, I will try to keep calm, and go into selfhipnosis :wink: when the next one is trying to kick be about !.... As for GPs. they come in all sorts...One is very lucky to find a good one ! I do not know about my bloods etc...my doctor only there if I call. Does not keep me informed about blood result unless I go and ask...I am finishing my antibiotics for my infection tomorrow. Will have to take sample of water to surgery. But as usual, will have to 'phone to find out results...very unsatisfactory. If PMR was'nt so persistent, it would not be such a problem with GPs etc. But the thought that this is going to last...and to be feeling so negletted by the GP. is at times very depressing. I come to this site so that I can learn to look after myself, and do the decresing in Preds slowly but steadily. Always hoping for the best ! :rainbow:Granny Moss xxx

Re panic attacks and adrenaline. I have always had the sneaking supicion that my adrenal glands do not get the message to go on holiday while on steroids. I once remarked to my doctor that I thought I had too much adrenaline and got what is called a very old fashioned look but no comment. I was taking 15 mgs. Pred at the time. Still get the odd hyper day on 6 but nowhere near as severe and the deep tummy breathing definitely does work. No need to concentrate on doing it all the time but 5 or 6 sessions a day or \" as needed\" as the prescriptions sometimes direct works for me.

[color=red:7a675264c7]Granny Moss[/color:7a675264c7] Re feeling neglected: I think it is quite usual to have to 'phone for test results. Our surgery, which I have always thought as being very efficiently organised, has a number to press on the choices if that is what you want. We can always ask for the doctor to 'phone us at home, too. I was always told if I needed to make another appointment. Otherwise it was \" come back if you need me\" and I am happy with that but I certainly would not be willing to wait too long and I have never had to. You are right, I am very lucky.

Perhaps a dip-stick test will be al that is needed to check you UTI and you will get an answer on the spot. Good luck.

Wow!!So many replies , I am overwhelmed!

Thank you to all , I am beginning to feel I am not alone now.

All your tips have been noted & thank you for sharing with me all your problems with this awful illness.

I felt probably more depressed with it, because I had planned a visit to New Zealand to see my daughter , son & grandchildren in Jan & had to cancel & in Nov, my dear brother died.so on top of this my spirit dropped a lot, but I have a super hubby who with his silly jokes keeps me up on bad days.

I am usually his carer, he has heart probs & diabetes , plus he too had P.M.R. for many years & sometimes I think he still has it.anyway it helped me to understand things a bit better.

i have visited the sites you all mention & hope to join the P.M.R.GCA one soon.I believe there is a d.v.d available when you join.

I will continue to log in & add my twopennorth worth on occasions.Thank you all again for your wonderful support.

Hello again Amycakes

Oh, I'm so sorry to hear of the additional stresses you have had to endure with the sad loss of your brother and your cancelled New Zealand trip to see your children - as if PMR, GCA and steroids aren't enough to cope with. PMR and GCA don't take kindly to stress and we are advised to avoid them as much as possible but unfortunately through life we have some stresses thrown at us that are impossible to avoid.

BUT, on the positive side, how wonderful for you to have such a \"super hubby\" and one who has also had the misfortune to experience PMR - at least it must be reassuring having someone by your side who knows exactly what you are going through.......but better still who has also recovered.

Yes you will find all the information about the DVD on the PMR/GCA NorthEast Support Group site including an application form to print off - I believe you only have to pay about £5 to cover costs.

Very best wishes and I hope you will now have a smooth journey to recovery and can look forward to re-arranging that trip to New Zealand in the not too distant future.

MrsO

Amycakes - you mention you still have some headache. If that gets any worse or you get the visual symptoms again don't waste time with trying to see the GP - go straight to A&E and tell them your history, don't wait, even overnight. Those short losses of vision are called \"amaurosis fugax\" (af) and are typical symptoms of GCA - it may be a patchy loss, like a curtain or just blurry. Don't ignore them as once the vision has gone it rarely is regained. It should be treated with high doses of steroid - often a drip into a vein to avoid loss of sight. It is a medical emergency and should never be ignored as you have been before. A&E should get an eye doctor and/or a rheumatologist to see you. You do get af with other things too but your history means they should look there first.

Grr! Loud shout of \"LOOK AT THE CLINICAL PICTURE FIRST\". Not everyone has abnormal blood values and you cannot say it's not some things just because the lab values don't show it - and anyway, the lab might have got it wrong. It does happen. :roll: :oops:

EileenH

Thank you for all the info, much appreciated.

No headaches today , but will keep in mind your advice.

Saw Doc yesterday, he has told me to start dropping by 5mg every 2weeks, so on 40 mg from today.

I am feeling better , not so many low moods & tears.just weakness in legs ,& arms & sometimes achy hips.

I was wondering how many sufferers , were on Statins?

It seems to pop up now & again.

I was on Simvastatin for a while, & when I became ill , checked the side effects, & I could tick every box, makes you wonder, doc stopped them & I am still not taking them.

Anyone taken Co -enzyme Q10?

Supposed to take with Statins, it gives an energy boost I am told.

Will keep in touch

Amycakes

[quote:03d28c6b61]Anyone taken Co -enzyme Q10?

Supposed to take with Statins, it gives an energy boost I am told. [/quote:03d28c6b61]

I have just responded under Alendronic Acid take a look.

The answer to your question is why do you want to take it.

If just for an energy boost think hard, fatigue is part of the problem with PMR, GCA and steroids. There is a good article issued by ARC on how to cope with fatigue on the North East website.

Simvastatin, the people who have taken this particular statin, which has side effects that mimic PMR symptoms, are numerous.

Hi again Amycakes,

so sorry to hear of your problems, and then along comes PMR to add to things !

I am on Simvastatin, I had a minor stroke a few years ago, at the age of 50.

When I started with PMR, but before diagnosis, my GP agreed to my suggestion that I stopped taking the statins in case that was what was causing the muscle pain/stiffness etc.

He suggested I stay off them for a month and then if there had been an improvement, we'd try another type of statin.

Well, before a week was up I was back there again I was in so much pain, then bloods etc. taken and told it was PMR.

So I was put back on the statins, what with all the other meds, I would rattle if I could move fast enough.

If anyone finds the answer to an energy boost, please let me know ! :wink:

Best to all,

Julia ( DD )

There are pharmaceutical experts who regard Simvastin as capable of CAUSING polymyalgia rheumatica (or being the trigger of it developing). There are other statins that are not so closely associated with it so if you need a statin and are prepared to take them - ask for another one.

EileenH

Thanks for your replies.

As for Co-enzyme Q10, I was curious, would perhaps try it , once I am on the mend so to speak.it should be taken if you are on statins apparently.

I have a dear friend in her late 80's, she is into homeopathy, magnets etc,& has helped me in the past, she suggested Devils claw, which coincidence or not has helped with the pain in legs.

I also put magnets on painful places, no one was more sceptical than me, but it did work, so I bow to her knowledge.

I guess we all may grasp at straws on times.

Hope you are all feeling a bit better like me today.long may it last!

Thank you for your help & advice & take care

Amycakes.

Hello Amycakes

Glad you are feeling a bit better

Never had any experience of statins and hope I dont need them but my husband has taken them for quite a few years ( familiy history ) with no problems

As to the magnets people are used to my horse medicine on here !! but magnatherapy was first used on horses particuarly swellings and sprains and strains There are special wraps you can buy you dont have to stand there with a magnet !! One Vet I knew who had practiced for a long time gave it up to do magnatherapy full time as he was so convinced of its value

Another thing was probiotics over 20 years ago we were told to give our horses probiotics after they had had antibiotics to balance their gut again but they have only been really popular for humans for less than 10 years I would say My 33 year old horse is on a herbal supplement which has given her a new lease of life Agnus Castus for hormone balance and I have started taking it and the night sweats I had through the steroids have just about gone !! ( menopause long gone !!) Something the Vet had prescribed for my horse had a dreadful effect so I would never say no to herbal or homeopathic remedies

best wishes

Mrs G

Thanks for your input Mrs G, I use micropore to stick the magnet on whenever needed, I leave it on in the shower & up to a week.

Then give it a rest, funny thing is it seems to work, so I am grateful.

They are about the size of an old penny.

Worth a try.

Cheers Amycakes.