not visited the site for a while my last thread was about pmr and gout and i have now been given the all clear after 4yrs of pmr when i first started i had a esr reading of 114 and as you know we men have a much worse pain than you ladies.? I thought i would never get better so all you who feel the same i would like to give you hope that one day it will go so keep fighting and good luck :Donone
Many congratulationa, Donone, and thank you so much for taking the trouble to post and pass on your good news :bubbly:, such a great big morale boost for each and everyone of us to hear of someone reaching the end of their PMR journey.......and steroids! I remember your posts a few years ago so it's so good to hear back from you now with this news. I would love to be able to post similar news soon as I've got down from 40mg to 1mg but viruses and odd pains (possibly not PMR-related) have got in the way in the last few months making it a bit scary to jump that final hurdle!
Keep well and enjoy your new-found PMR-free life. :D
MrsO
Congratulations it is great news
I am on my second bout of PMR and this one has lasted over 2 years all i would say is take care of yourself and make sure you dont overdo it as I did and hence my 2nd bout I didnt even know you could get it twice !!
Best wishes for a healthy life
Mrs G
donone
So lovely to hear that you are in remission and I hope it lasts forever.
Don't go mad just enjoy your freedom.
Keep popping in, even if its just once a year and see if we have all disappeared as well.
\"donone\"
This is indeed great news look after your self
Fantastic news and reasons to celebrate :D
I am just starting out on my PMR 'journey' and your lovely message has given me hope for the future although at the mo I only do one day at a time :lol: :lol:
That is so encouraging for all of us. :magic: I am coming up to 3 years on my second round and, as that was when the first bout called it a day, I can feel myself getting feelings of impatience. ( Not unusual ).
I think that one of the hardest things to accept is that there is no defined path to recovery. At every stage there are good, bad and indifferent days and a graph of our progress would look a bit like those that the financial pages publish of the FTSE but you have got there. Enjoy every day and give yourself a rest :zzz: :sleepy: BEFORE you feel the need. Many on here agree that stress has been an important factor. BettyE
Hello ! I have just been watching Horizon's \"The mystery of Pain \" It is in the brain ! Apparently we each have a different threshold to pain. The brain can be controlled by distracting it's attention from the pain, to some other visual interesting actions. This was interesting to me, because when the pain awakened me in the middle of the night, I got up and went downstairs to put the TV channel 80 News on. It seemed to help. Also, I have done some exercises that a Physiotherapist at the surgery thought.
Fold a blanket and lay it on the floor of a quiet room. Lay on it on your back, legs together and arms down the side. Now, breathe in deeply and slowly, hold for 2 -3 seconds, exhale. While breathing so, clench your hands, and muscles of your arms right up to the shouldes, hold 2-3 seconds, relax. Clench the legs, feet and thighs mussels, thight, holds 2-3 seconds, let go. Keep breathing deeply in, hold, exhale, as you do so. Now, pulling your tummy muscles in, and your buttocks, thight, hold for 2-3 seconds, let slowly go. You can repeat all of this, 2 or three times, but not if you are in the depth of pain ! If you can, at the end of the exercises, play some soothing music, while still lying there, holding your eyes close and immagining that you are on a lovely beach somewhere, and the waves are rolling in and out with the pebbles making a soothing noise, you could relax for about 20 minutes ? It does work for me...but, I wonder if I made it sound a bit bothersome ? I keep trying ! :oops: :P Granny Moss :wink:
Hello Granny Moss
That's a great breathing, relaxation and meditation exercise you've described. I used to do it at a Yoga class some years ago - the fantastic teacher would talk us through it taking us through some imaginary scene towards the end and by then you are in a deep state of relaxation, so much so that on one occasion I felt I had literally sunk into the ground! I felt fantastic afterwards. It isn't easy to reach that deep state of relaxation and meditation but it is the most wonderful feeling when it happens. :zen:
I was referred on to an NHS Pain Management Programme at my local hospital towards the end of 2009. It was run by a physiotherapist, a psychologist and a specialist nurse and there were a dozen of us on the Programme - it covered everything including pain, sleeping problems, diet, exercise and relationships and you end up with a sort of 'tool kit' of how to manage your pain. The only downside was the time I had to wait to get on the course - I gather they are very much in demand and it's so difficult to believe just how many people are suffering chronic pain in their lives
I have recorded the Horizon programme following your prompt yesterday and look forward to watching it in the next couple of days.
Carry on \"keeping trying\" Granny Moss.
MrsO
Granny Moss that is a wonderful way to 'chill' out and like Mrs O I USED to go to yoga ( until my pain got so bad and I was still un-diagnosed)and the relaxtion part at the end was fantastic...... I still try to do something like this with rainforest sounds playing on my good days!
Thank you for sharing because many others might like to try that.... really does take you out of yourself :D
I missed the Horizon programme too as my hubby wanted to watch something else. Had a close friend who struggled to get onto one of those Pain Management courses and didn't make it before she passed away sadly.
Have any of you heard of a 'pain pen' which you can use on your worst places?
And....... is it usual to use 'painkillers' to help with pain with PMR as I thought that if the steroid dose was correct, you would not have pain?
Painkillers and PMR. I have never taken pain killers, as I was so very lucky not to need them. But now, I am taking Preds, and trying to reduce the dose. In July last year, when diagnosed with PMR, was given 20ml got down a drop of 10ml in four weeks, Then to 5 then 6 and now I an STUCK at 7 !!!! Feel confortable with this but suffer from woolly heads (at times it feels as if I have more than one...) Wobbly legs...and feel as if I am a bit over the \"limit\"....zig-zagging with a walking stick. I do not think I will have the courage to take the next drop....Probably will need a lot of support from you lovely friends on this site ! Love, Granny Moss :artist:
50sgirl - the steroids do the best job of managing the pain and stiffness by reducing the inflammation that is the cause and whilst non-steroidal anti-inflammatories can be used in very mild cases of PMR they rarely deal with more severe cases. Once you are on a well-adjusted dose of pred it will deal with a LOT of the pain but rarely 100%. I used ibuprofen for the 5 years I was undiagnosed and it took away the worst of the pain (but only the worst) for most of the time - but when it got really bad 2 years ago it had almost no effect. My amazing GP :roll: (I use the word advisedly, he should have been either a surgeon or a pathologist who either are expected to have no bedside manner or the patients no longer care :cry: ) handed me Voltarol SUPPOSITORIES. Yeah, right!
You will find as time goes on that you find a level of pain you can live with - if not, there's something wrong. You are unlikely to be totally free of some pain. But be very careful in using pain-killers - the anti-inflammatory ones (aspirin, ibuprofen) which do help some are not good mixed with steroids as they may cause worse gastric irritation and most doctors and pharmacists would advise you not to use them regularly. I use ibuprofen very occasionally as it is the only thing that has any effect for me but wouldn't use it every day - it can lead to bleeding like that found with aspirin and that was actually the biggest problem pre-PMRdiagnosis.
Pain-pen I haven't heard of - does anyone use a TENS machine? That might be worth considering. German programme tonight was talking about the -110C (I think) chamber that is meant to be fantastic for arthritic pain relief - 3 mins at a time! Anyone fancy it?
EileenH
Hi FiftiesGirl and all,
When I was first diagnosed back in April last year the steroids did not \"kick\"in for a few days and I was on Tramadol and Arcoxia. They made me VERY fuzzy headed, and my walking looked like I had drunk a bottle of whiskey :oops: , but I was ,at least ,pain free :wink:
I rarely need to take a painkiller now....only when I stupidly over-do things. I am sure that others on this site will agree that if the steroid dose is correct that extra pain relief should not be necessary, and the less tablets to be taken the better
Granny Moss...My dear departed mother-in-law often said that if you can't sleep at night (a problem for many of us on steroids) that we should just try to relax and use the methods you described so well 8) . I used to get up out of bed in the wee small hours when I could not sleep, but now I stay in bed and do relaxation breathing instead...I might not be asleep, but at least I am resting and giving the muscles time to get ready for the day ahead :D
Very best wishes to all, pauline
Hallo Granny Moss, You are a great girl! ( Ithink we agreed that \"girl\" was ok, didn't we? ). I'm going to try your relaxation. will report later.
I watched the Pain programme. Horizon is always worth a watch Treat subjects seriously but makes them understandable. No silly gimmicks. I'm a great believer in distraction for pain. It's always worse if you sit and suffer and give it your full attention, I find.
Mrs.O My sister is a great yoga fan and was embarrassed to fall asleep at one of her first sessions but the teacher was very impressed and couldn't beleive that she was a novice. I guess she was a good teacher. I always felt pleased with myself if a child smiled and said\"That was easy, Miss.\"
You said to let you know about the BP ( I think it was you! ) Well a way to go but lower than last time and GP happy to \"watch it \" Thank goodness no pills as yet. Go back in a month when I hope to have reduced to 6mgs I did find before there that there was a high correlation between the Pred. and BP. Looking forward to being 117/78 again one day Well I can hope, can't I ?
Hope you like being highlighted. Happy to change colour ig you don't like red.
Hello Betty
I'm so impressed - me and Granny Moss with our names highlighted in red! You're leaving me behind as you've kept up your boxed quotes (taught to us by Rick, I think) where I have failed and now you're showing us another skill so well done you! and no wonder one of your pupils found it \"easy\"!
Yes it was me going for a BP check at the same time as you and dreading it - however, with the focus being on my gland problem and letter to hospital etc, he forgot the BP! :lol: That's good news about your BP reading lower than last time, Betty - possibly the result of you now being on a lower dose of Pred? As for you having been 117/78, I don't ever remember being that! I'm now just concentrating on losing a bit of weight to see if that will bring mine down a bit in case the Dr remembers next time! :wink:
Off to have a load of blood tests now, including my firt Vit D. Apparently my ESR was 49 at the last test a few weeks ago and my Neutrophils were raised - don't know what that means except it may all be to do with the swollen glands). :roll:
Hope you're having the sunshine to today - it's a tonic!
MrsO
Mrs.O
This one is called cyan. I know it's on all the print cartridges but to me it's blue.
Good luck with the glands appointment. At least they saved you from the dreaded BP but it does sound very painful. When I complained of sore gums I later realised that the salivary glands were involved, too but not those in my throat. Most unpleasant and limiting.
I tried my walker this morning for the first time. ( No, I didn't go for the wheelbarrow as you cheekily suggested! ).It was a big help for my legs esp. on th uphill bits. My arms feel as though they have done more than their share, which, of course, they have but it's not the same as PMR pain so that's ok Best wishes to you and all. BettyE