So..there are people like me out there!!
Posted , 10 users are following.
A great big hello to you all. I am a new boy!!
I am a 55 year old man from Fareham in hampshire. Until recently I have always been mentally and physically fit, and very young at heart! I worked at a senior Director level in business for many many years and took voluntary early retirement a couple of years ago so I could enjoy life! And then in dec 2010.. an earthquake struck me..well not literally.. in body terms I woke up very pained and very stiff all over. I had no idea what was happening to me, and just put up with it for a couple of weeks. I gradually got worse and worse and was in so much pain that I could barely get out of bed, or out of a chair, every movement hurt, and the extreme pain and stiffness was in my.. neck, shoulders (just like acute frozen shoulder times a 100), hips, thighs, arms, and i felt as though I had an extreme virus feel throughout my entire body (as though my body was under attack), and had stabbing pains in the toes and feet, and at various other parts of the body.
At this point I could take no more. I wont bore you with the details, but suffice to say my GP had little idea what was wrong with me and arranged for lots of blood tests. Most of the results were normal (which I thought was incredible as I was sure I must be at least dying !!), but the standard tests for inflammation were, in the GP words , \"through the roof\". At least something was wrong then!
The GP referred me to a Rheumatologist. I paid for that to be a private consultation as I thought... I want to be cured by the end of the week please, so if I pay privately all will be quick and well. Yeah Right!!
The rheumatologist referred me also to see a neurologist for lots of other tests, again which I paid privately for (oh how I wish I hadn't done that). The Rheumy consultant said he thought I had polymyositis but would need lots of other tests done first to rule other things out. I had the following tests:
-muscle biopsy
-EMG
-nerve conduction tests
-CT scans of chest and abdomen
-MRI scan of spine
-MRI scan of legs
-more blood tests than your average astronaut would require
and most of which were normal...how refreshing!! The MRI of spine showed signal changes in the spinal muscles, and the blood tests continued to show extremely high inflammation levels. But nothing to confirm what was happening to me. Both the neuro cons and the rheum cons separately said to me, that they were now certain that I had an auto immune disease which was causing a severe....poly... of some sort or another.
Whilst all this was going on, I could hardly move. The rheumy man and my GP discussed the case and put me on 40mg of steroids. Within a few days....wonderful stuff..I could move and was relatively pain free. Yippee I thought there is a god..wow how good did I feel. But I knew nothing of what was to follow. I thought I had been cured, and had no idea of side effects etc. It was worth living once again, and sorry to joke on that point, but in reality during those early weeks I felt so so bad, had no clue what was happening to me, and felt very strongly that I would end it all.
(as sadly I have on many further occasions since). I know that is not the answer but I felt so alone, so isolated, and most tests were 'normal', and had no idea what was wrong with me, and also had no idea that 'I was not alone' and that this forum with the lovely people on it existed.
Anyway, back to my story, and for those that are fed up of reading it already..you are politely excused!! For those that are in it for the long haul.. many thanks for sticking with it!!
To cut a very long story short.. I self medicated with the 40mg steroid dose once I started to put on weight and had more knowledge of long term side effects. Foolishly I thought...maybe the problem has gone away..and stupidly would just stop taking the steroids altogether (predsisolone 40mg daily), and would stop for say a week or so. How very silly and how very naughty. Within days the pain, stiffness etc was back with a vengeance. It hadnt gone at all.
The reheum cons has now said that I do not have polymyostis which is more muscle weakness etc, whereas my problems are inflammation, pain and stiffness of the aformentioned areas. He has fully diagnosed me with PMR (which i had never heard of before), and spoken to me at length re the steroid dose 'rules' etc. He has also said that I will be on meds for a few years at least. He did consider putting me on methotrexate as the immune suppressant and lowering the steroid dose. He has however decided in the first instance to give a maintenance dose of steroids a go to see if that can control the symptoms and only use methotrexate as a last resort. He has decided to trial a reduction of the steroids from 40mg a day to 30 mg a day for a week... and then stay on 30mg for 3 weeks... and then to reduce the dose to 20mg a day thereafter. He feels that due to the severity of my symptoms when not on the meds, that I may need the maintenance dose to be as high as 20mg daily for a year or two, although he would prefer it if my symptoms could 'cope' with the dose being at 10mg or lower which is the tipping point for side effects as the body naturally produces 7.5mg daily. ( wow look at me sounding like an expert..I know very little indeed, this is all based on what the consultant has said to me!!)
All I do know for a fact is... without steroids the PMR is a disaster for me, and I develop such pain and stiffness in the areas mentioned earlier in this note, that life would then be not worth living. But with steroids, a miracle occurs..but why cant they make a tablet with the miracle properties..but without the side effects. Come on drug companies.. sort it out!!
I also accept that the steroids are only treating the symptoms.. and not curing the cause. Which they say is an auto immune problem. Why that happened in the first place they have no idea. They said it could have been caused by a virus, or who knows. Maybe the last 35 years when I was in a hyper stressed business environement, and lived on neat adrenaline, and made my mind full of OCD type behaviour, contributed to the cause, but perhaps I will never know the cause... all I am left with is the PMR now.
In an attempt to try to take something to help the immune system out, whilst taking steroids, I went to an alternative health practitioner, (forgot what they are called now..is that steroids, PMR, or an addled brain!!) who prescribed zincum 200mg tablets. Didnt work sadly. So my latest quest is I have ordered from Spain (oh the wonders of the internet) a natural PMR remedy (wonderful claims made ) some tablets called Gemlarex.Prob wont work either but hey I thought I would give it a try. Also trying some exercise (gym bike, gym running machine, and gym weights ) but that seems to make me worse in terms of pain and stiffness but I must try something.
Sorry if this has rambled on a bit... but I thought I would log my exepriences, especially as you all sound so so nice, and I thought I was alone in this. I now feel as though I have found an all new family, a family that understands and has a shared experience.
I hope so much that I can learn from you all, and if there is ever a local support group ever set up maybe one day I may meet some of you. I wont be negative I promise, I will keep those feelings to myself.. I will be fun, happy and supportive.. and if the steroids havent worked that day I am sure a nice pint or two will lighten the mood!!
Thank you all for being there.
Very kind regards
Rob
0 likes, 24 replies
odiecass
Posted
I know most on this forum disagree but when I was diagnosed in November 2008 age 59 and put on 25 mg of Pred. I aked my rhumey and my GP if I could still ride my bike and go to the Gym [ I was averaging between 150=200 miles per week and still doing some masters racing]. They both said to keep doing as much as I could. My weekly mileage dropped some as I could only ride every other day and not every day, I stopped racing but I think forcing myself to exercise even when I was in pain has helped me keep my sanity and most of the excess weight off [still gained about 10 pounds]
Anyway I am down to 3.5-4 mg on alternate days, still pain in the morning but taking this reduction very slowly as I have had my ups and downs after getting below 5 mg because I've tried to rush it.
Most of the Ladies on this forum seem to suffer more pain and disability with PMR than the men and I know how much I suffer so in a way we are lucky
Good luck and keep the wind at your back.
Andy
EileenH
Posted
cheers, Eileen
mrs_k
Posted
Bob yes we did disagree with you, but that was because most of us had tried, not only NSAIDs, but other stronger pain killers, morphine based and still found that nothing touched the pain. Some people have a higher pain threshold than others as well. And I am so pleased that you managed to come through and out of t'other end and hope it never ever comes back.
Yes whilst PMR presents with the same symptoms and needs the same medicine, men do recover (go into remission?) quicker than women. They seem to be the people whose pmr disappears within the 2-3 year timescale.
It is not surprising as we are different - whether we like it or not.
But then each of us is then different to the next person, metabolism, history of living, child bearing etc.
But what does fo one, does not necessarily work for another. It is a learning curve for you, as an individual. The one hard and fast rule, that I have learned in this journey I did not want to undertake, is listen to your body, only you know how you feel. Don't push it beyond its limits. PMR will bite back.
EileenH
Posted
What all of us have said - and what I think is what you perceive as disagreement - is that you need to approach it carefully. There are people who have taken the attitude that they won't let this beat them and have attempted to carry on as they did prior to developing PMR - and some have ended up quite poorly as a result. It is very easy to tip over into a state of chronic fatigue in which you can't do anything (and before anyone objects to that term - I'm not saying \"chronic fatigue syndrome\"
.
I've seen both sides of the coin. I developed the symptoms of PMR in autumn 2004. I had had vague signs for a few months before - lost the spring in my step and couldn't do step aerobics properly, my feet were sore and I seemed to get tired much more easily. I put it down to being not as fit as I would have liked. Then suddenly I couldn't use the cross-trainer - within a couple of minutes my quads were in agony and nothing I could do improved the times. Leg-presses became increasingly difficult. I changed gyms to one with a pool so I could do aquarobics and increase the Pilates classes - and that got more difficult, moves I'd been able to do easily became well-nigh impossible. I'd been to the GP and had seen a rheumy - normal bloods, only 52, too young for PMR, diagnosis missed despite enough other positive signs to suggest it. That continued for 5 years - no medication except the occasional ibuprofen to take the edge off the worst of the pain but I was never pain-free.
In January 2009 I had a transient global amnesia - and within days I couldn't move without severe pain, couldn't get up out of a chair or off the loo without assistance - the whole gamut. Same story, bloods normal, blah blah. Because of the TGA a consultant (unnecessarily, because she wouldn't listen to my clinical history) decided I shouldn't drive until I'd had an EEG and I was stuck. Couldn't get to the gym even if I could have got in the car, walking more than a couple of hundred yards was horrendous. I realised how limited my lifestyle had become in the previous 5 years to cope - without a car I was pretty much housebound. At the beginning of March I managed to get here to our flat - alone, by bus, plane and train. I spent 3 days in bed when I got here! I was able to get my ski gear up to the storage depot so most mornings I struggled to the ski bus and went up the mountain - and skied for 2 hours. Only short runs, resting on the way down and on the lift and in the huts :wink: . When I went home the walk back from the bus was easier, the exercise had helped some. But the hip bursitis didn't go away and walking far was out of the question. It was then I did the research that found the possible dx and when I got back to the UK I asked the GP. Eventually I was allowed a trial of steroids - miracle, pain almost gone in a couple of days, normal walking in hours. Yup - PMR.
But even now, 2 years on, if I overdo it on a good day I may be in pain that stops me doing anything for 3 - so I am careful. That's why we want to warn people of the problems - not stop them trying. You were told by the docs to \"keep doing as much as you could\". And that's what we are saying too - and what most of us do too. We're not disagreeing - just qualifying. You won't cure PMR with exercise although there are people who think that.
Eileen
rjw
Posted
Thank you so so much for all those that have taken the trouble to reply. Words cannot convey how grateful I am. From being in a position to thinking nobody could ever understand how bad this thing called PMR is, and as to how I must have been a mass murderer in a previous life to deserve this Karma, I find that many other people are affected by this awful PMR as well. And guess what, even in the darkness that this disease brings... those very same people spend a lot of their time being so supportive to new boys like me. You are all wonderful people, and I thank you once again from deep within my heart.
You have all given wonderful advice about the PMR itself and of course the wonders of prednisolone, tinged with the misery of the side effects. I also greatly appreciate the 'exercise and caution' comments, as over the last few days rather than 'embrace and accept' the PMR... i decided to challenge the condition. It was a s though I am 'In the olden days'.. i threw down my gauntlet to this dastardly thing.. and said i would meet the PMR in my local gym at 0800 mon to fri morning of this week. I did ten mins on the bike, 10 mins on the runner, and lifted weights machines till i could lift no more!!! I so wish i had read the 'exercise caution' posts first, I knew the pain was bad whilst I was struggling to lift the weights, but my silly determination to fight this thing, coupled with the testosterone of a lion ( a laughy point for the ladies!!), made me cvontinue.
Lesson well and truly learnt... my body says the following..\"dearest Rob, even with the wonders of steroid support, you are having a laugh if you think you can exercise like an 18year old russian gymnast, so as you have overdone it, we have withdrawn bodily movement and fluidity, and replaced it with pain, stiffness and little movement, until you learn your lesson!!\". Well, I can safely say my very dear friends, the lesson has been learnt, it is now slow and rhythmic build up from now on, with mainly walking and little or no weight lifting!
Thank you all for being there... and if any of your rheumy experts find a cure by the weekend, please let me know!!
Hugs to you all ( well gentle ones at least, to prevent breakages!!)
Rob
EileenH
Posted
Give it time - in a few months you WILL be able to do so much more. Maybe this is a higher power pointing out to a lot of people who have been or had to be in control (not control freaks but holding down responsible jobs, running homes and families and so on) that they can have the last laugh - bit like the weather messing up all the man-made changes.
Hope the weekend improves - let someone else do the sport for a few days, :wink:
Eileen
fiftiesgirl
Posted
I am now a year into my PMR journey and so much 'better' than I was a year ago - it has been a bumpy ride but has settled these last few months.... going down slowly on Pred and only 1mg a month.... down to 13mg and seems to be fine at the mo with occasional reminders to look after myself!
I started swimming in a very warm pool a couple of months ago and follow the gentle lengths with a sauna and have found it excellent at keeping muscles exercised without doing any harm....... sadly have found walking problematical but a different problem has been found which is now being treated and hopefully in a few weeks I will be able to start some easy walking.
There is light at the end of the tunnel so hang on in there..... this disease is a nightmare to have as it seems to strike those of us who have led very active lives and trying to then come to terms with PMR and the inactivity is very hard indeed....
Wishing you well and do keep coming in to chat..... best wishes :D
rjw
Posted
Thank you all again, and may your own pain and stiffness melt away like snow flakes in the sun.
Supple hugs
Rob
Mrs_G
Posted
Ive been away on holiday so a belated welcome from me too !!
I have had this dratted thing twice My first bout was when I was 54 Horseriding , Gym twice a week , Aerobics twice a week and very fit but mine was a much more gradual aching coming on First thing was I couldnt jump to get on my horse but had to use a mounting block then after I sat anywhere for a while I was stiff and aching first thing in the morning then it escalated sharply I saw Rheumy privately as my blood levels were very low and he started me on 20mg Instant pain relief and it went very well and in 2 years it was gone Unfortunately it came back after 3 to 4 years and this bout hasnt gone so well and It will be 3 years in Oct but I have managed to get down from 20 to 2mg then had a blip and up to 4 so now having another go !!
Re the exercise be careful with anything too strenuous I helped with Riding for the Disabled and after a lot of running around in the freezing cold I damaged a muscle behind my kneee and it has taken about 18 months tio get better I gave up my health club last year as I had a total blip after I had been on steroids for a year and 2month and got to 4mg and then within a month I was back up to 15mg and pretty low for a couple of months I have now taken up a gentle exercise class and Nordic Walking which I have found great I think swimming is the best for you if you enjoy it
Re the Polymysiotis Just be glad it wasnt that !! My sister in law has that and was diagnosed at exactly the same time as I had my first PMR bout She was put on 60mg of steroids to start as they were worried the weakness was getting to her heart being a muscle as well Compared to me she is in a terrible state and because it is much rarer it seems to have very little support I think it has always made me have a different attitude to my PMR as I compare myself to her
My advice to anyone new to this has always to keep records Symptoms , blood results ,doseage etc as it does help to look back sometimes Just treat your steroids with respect !! dont go jumping about with the doesage Look after yourself as much as possible you do need to rest with this as well especially when you are reducing the dose as otherwise you can have steroid withdrawel symptoms A lot of us have found that stress makes our symptoms worse I like some of the others are surprised you have been put on such a high dose to start but as you do go down the doseage you do feel better
Hope you now have a smoother journey
Mrs G