PMRGCAuk
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Have I had PMR for years or just a month?

Over the past couple of days I have been wondering............. Whether I have actually had PMR for years rather than just the past month?????

Eight years ago I suddenly had problems with my knees which significantly swelled and stiffened whilst I dozed on the settee for an hour before a big night out in London for my 50th birthday. At the time we focussed on the left knee, X-rays etc nothing significant showed up and it was dealt with through physio. However since this time I have been unable to kneel. As this worsened over time, just put it down to usage and thought it likely I'd need replacement knees in the future. Over the years I adopted a stooped stance(hubby concerned I might have curvature of spine) aches and pains, tendonitus and ballooned a bit from size 14 - 18 and just put it down to the ageing process and weight gain.

Since taking pred for just one month I am down a size in dresses, I no longer stoop, I am, for the first time in eight years, able to kneel without significant pain, my knees and thighs have significantly reduced in size, so much so others around me have noticed. This is obviously due to significantly reduced inflammation.

When I had the crisis a month ago the Internet did not recognise symptoms below the waist as those for PMR. It was only when the symptoms began in the upper body that PMR popped up on my searches.

Given the above I am now wondering whether If I have had PMR for years and it just reached crisis point with a flare when diagnosed a month ago.

Is this a possibility?

It would certainly explain a lot if the theory is feasible.

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Hi Marilyn,

Could well be the case.

Many of us, including PMRpro with PMR and Celtic and myself with GCA had the symptoms, and the illnesses long before diagnosis.

As we're very often saying if you don't have a GP who's on the ball, or seen it before, or don't have all of the so called "classic" symptoms you very often get undiagnosed or mis-diagnosed.

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Thanks for the confirmation that my 'light bulb moment' is justified DorestLady. Certainly the 'presence' of an underlying autoimmune disease over time would explain a lot. However as the doctor only had what I gave him, at any one time, I can see why the dots were not joined sooner.

Our long standing doc was brilliant, and helped us through some very difficult times over a period of twenty five years, not least the birth of our sons and my husband's transplant. Sadly this wonderful doc died in service from a brain tumour. He was an 'old school' family doctor and nothing was too much trouble for him. He had the memory of an Ox, though you needed to expect an over run time of an hour and half beyond your appointment time. Despite this he was the most popular doc ever! I sincerely believe, had he still been around, if there were dots to be joined he would have joined them.

Sadly the nature of the beast is that patients often see a different doctor each time they visit a surgery these days. This is especially the case in larger health centres. Of course this lack of consistency makes joining the dots even more difficult for even the most caring professionals.

Bring back old school say I.

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Your remarks about about seeing the same doctor for many years certainly rings true in lots of cases. Yes they did know you, and all your previous symptoms, and actually made the time to listen to you at appointments, and then wrote their notes up afterwards.

Nowadays, they are so rushed timewise, they're already typing the notes and writing the prescription with only one ear on what the patient is saying. Plus very often, they make the diagnosis on your first few sentences.

I saw the same GP for 18months, and she didn't join up the dots - unfortunately she went off at a tangent on her initial diagnosis, and got stuck in that groove.

When I was finally diagnosed, and told her a couple of days later and the implications of her mis-diagnosis the look on her face was something to behold...she obviously realised what a complete horlicks she made of it, and was horrified! And probably could see a law suit coming her way!

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One lady who had a big hand in starting the charities in England had GCA and was very lucky that the senior partner in her practice had had a similar experience as a very young doctor - a GCA dx was missed and the patient lost her sight. It left her totally on the ball and insistent that her partners got it right. There are not many GP practices as well up on GCA as that one.

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No I bet there aren't. Would hope that my previous surgery is one though!

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That's what I meant! You did continue her education I trust?

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I did actually for about 18 months but then left, after OH died and "other " reasons I'd rather not broadcast.

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That's acceptable. As long as she doesn't forget you...

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..what do you think.. and most certainly it won't happen to another patient, either of hers personally or the surgery!

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I think a lot of people realise that something has been in the wind for a long time when they realise what has gone/improved when they are on pred. Which is why I think PMR can definitely start long before age 50 - or at least the underlying autoimmune problem does. PMR is, after all, the name given to the constellation of symptoms. It isn't the disorder.

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For some reason I am feeling the euphoria of an extended eureka moment of realisation. It all makes so much sense now. Thank you for confirming that PMR has been my friend for much longer than at first I realised.

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My partner and i were having a conversation just yesterday about how long I may actually have had PMR and GCA. About 5 or 6 years ago I had a really ghastly flu virus which put me in bed for nearly 6 weeks and left me with very impaired sense of smell taste which has never fully recovered. I have never really felt like my 'old self' since then - energy, sleep,fitness all impacted with a bunch of nebulous and sometimes weird symptoms which (when I researched them a couple of years ago) seemed to be connected with the endocrine system. Obviously this kind of stuff is not definitive in terms of cause and effect but for me anyway reflected the development of this AI disease as not a single 'event' but I think a long term process involving lots of interrelated factors. I am hoping therefore that I may be further through this disease process than I have calculated - or perhaps that is wishful thinking !

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I should also have mentioned that in the two or three years prior to diagnosis I lost my younger sister from an accidental death and some horrid family stuff which really impacted me dreadfully - and I am convinced that kind of extreme stress is often implicated - as many others have discussed here and elsewhere...

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That sounds like a post-viral fatigue type of thing - sometimes known as ME. That was the sort of thing I had in my mid-late 20s, it improved, then I had different AI symptoms (I know now) which were put down to pre-menopause - very pre, it was another 20 years! They improved on HRT. I stopped the HRT and within a relatively short time, PMR turned up. And I know a couple of others with similar histories.

If only we could track them down properly - I'm quite sure the label you get depends on the most prominent symptoms and otherwise they are all interrelated to some extent.

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Me too,was first diagnosed with autoimmune disease about 25 years ago my GP fortunately connected the dots very quickly and sent me off to the Rh clinic as I was not "normal for pmr" when I e-mailed my daughter she e-mailed back "NORMAL when have you EVER been NORMAL? " 😂

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😂

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I think that is definitely a possibility. I wonder that too, I had swollen knees that used to produce a sharp shooting pain on coming down stairs. More significantly I had low level depression with flu type symptoms for years. I used to say to my therapist that it felt so physical. As soon as I took Pred the depression lifted and never returned. For that reason I put up with all the side effects, depression was the worst.

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My first bout was knees and hands on agonizing pain. It was though to be RA.

The second time now the aging arthritis pain I though creeping up on me flared to this horrible PMR. It was coming for at least a year. The wrong diagnosis caused a lot of suffering until I could see a rheumatologist.

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Since posing the question on this post and reading replies I have been tracking backwards in time in my mind, going over events over the years and the physical impact these have had.

In doing so it has become clearly evident that, even as far back as when I started teaching aged 21, my body would respond to stress. It never 'let me down' during term time ( my attendance was impeccable), but always during holidays when the triggers for stress had subsided and the mind and body started to relax. Initially it was coughs, colds, sore throats, viruses - an accepted teacher's curse, a common response within the profession so by no means particularly noteworthy. Clearly though a cause and response pattern was emerging.

At some point in time 'the norm' viruses for me changed to becoming infections, every three to six months. Although docs would say recurring infected cysts in groin and underarm were down to in growing hair follicles etc I always pointed out they occurred once a particularly busy, stressful period had passed and I was beginning to unwind. The doc would smile at me politely and just agree that might be coincidence.

And so it went on with frequency of infection increasing. Infections were treated, as one would expect, with short courses of antibiotics then longer courses as time progressed.

The scene was set!

I can though pin point the significant knee problem to the precise day 3.6.08. This is the day I now believe, in hindsight, something called PMR started. I can pin point this so specifically because it happened on my birthday three months after my husband's transplant following eighteen months of significant emotional trauma and crisis management. It happened when I was resting on the settee for an hour. No problems whatsoever with the knee beforehand, but on waking after my doze significant pain, couldn't weight bear etc. Took six months to 'recover' but could never kneel again (until recently since taking pred).

Then came the less obvious 'creeping up, symptoms of stooping neck and shoulders, a bit of tendonitus here and there, seeming weight gain due to swelling body etc. (All symptoms gone since using pred in last month!)

Eight years later PMR manifested, with a vengeance, three months after I lost my mum. Once again the trigger being extreme emotional trauma.

So, now I have worked out for sure what is happening, the big question is how to I break out of the cycle of a lifetime? This thing isn't going to 'go away' with pred. I have come to the conclusion that I need to be proactive and change the way I deal with the emotional stress (mind) so that I have greater control on my body's response (physical). But the big question is how? Who and where do I go for help to develop strategies? Any suggestions?

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Hi Marilyn,

The fact that you have recognised what your problem is/has been means that you are already on the way to combatting it.

My late hubby used CBT for a few weeks when he was really "down" with his chronic health problems. Under normal circumstances he wouldn't have considered it - usual tough macho, ex services type and all that.

We always were a couple (and family) that could talk things through, but I did say on this occasion you need professional help. So he got it, and although he was a bit sceptical at the start, he did agree that what was recommended/suggested was helpful, and really not as "Off the wall" as he had expected. In fact, as the therapist said - he cured himself by accepting there was a problem, and then addressing it.

I realise it may not be that easy for everybody, but you've made the first move to "break out of the cycle" so take it further. Discuss with your GP, he 'll set it in motion.

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Thanks DL. Mentioned CBT to doc who gave me details for self referral this morning. Completed and sent this afternoon. Just had a call from them to confirm receipt and they will be ringing me tomorrow to get the ball rolling. All on the NHS - unbelievable!

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Good! Wish you well.

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I use cognitive behaviour therapy. Not say it's perfect but certainly stops negative thinking more quickly. I have bad days and have had my say on here. But once it's out and said I address the issue and realise what I can control and what I can't. I get stressed but try and get rid of most stressful without limiting life. Google it. I was fortunate last batch of therapy/stress management was provided by benefits office some years ago.

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As an uni lecturer in the past I recognise that end of term collapse of body!

Here's Wikipedia fed of cognitive behaviourtherapy

Cognitive behavioural therapy (CBT) is a talking therapy that can help you manage your problems by changing the way you think and behave. It's most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.15 Jul 2016

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The daft thing is I and others around me have always believed me to be laid back. In fact to quote another HT colleague, "Marilyn you are so laid back you are horizontal!" The crazy thing is I never 'felt' stressed either! So this is abit of a revelation. I do need to change my behaviours.

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It's hard to recognise and change patterns of behaviour and I think external life has to change too. It's finding out which to tackle and when! I was a "centred" character as people used to say but the stress stuff keeps happening. The most depressing and stressful part was the realisation that I couldn't rely on my body to carry out the responsibilities I had. That made body worse....mind worse etc etc. Last 10 years of cycle of stress and anxiety. I still have friends that see me as a non-stressy person when I know I live in the edge and reflect on how to manage and change responses to stress.

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Actually people said the same about my hubby. He didn't seem to have a care in the world. Always the life and soul of the party with his quick wit and funny stories. But deep down he was very sensitive and thoughtful man which others very often didn't see.

That juxtaposition of personality sometimes takes it toll without you realising it!

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Thank you all.

I have just been to doc and told him my theory. He responded by saying , 'whilst it cannot be proven (link between my mind and body) you may have a point!' He gave me details for self referral which I have just completed for behaviour therapy. I had similar six months after traumatic eighteen month period resulting in hubby's transplant which was when I now believe I first experienced symptoms of PMR like symptoms I.e. Knee incident referred to in initial post above and subsequent aches and pains I have lived with for last eight years before major flare? a month ago. (Told doc I was thinking of PMR in these time frames now rather than a new thing diagnosed last month. He didn't disagree - don't know if this was due to agreement or he didn't dare disagree as I was on an assertive roll! )

Hopefully I will meet the criteria for CBT, so that I can give you guys and gals a bit of a break!

I also asked about global long term antibiotic to give PMR a chance to recover without interference of infections. Unfortunately one global antibiotic for my infections doesn't exist. So no preventative quick fix unfortunately. 😞

However he has provided a long term antibiotic for UTI's which I can take on cruise. I shall ask dentist to do the same, though hopefully tooth extraction prior to hol will solve the need for antibiotics on the dental front.

Now knackered just thinking it all through! Lucky I enjoy the challenge of problem solving, finding solutions. Keeps me busy and on my toes. Time for an afternoon nap methinks.

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Thank you Marilyn - and everyone else. This makes perfect sense to me - fatigue, low grade flu like symptoms on going roving pain and at time severe depression over years. It wasn't until four years ago after numerous mis-diagnoses X rays, tests etc that I did extensive research and went to the doctor and said THIS IS MY PROBLEM ... and was told 'yes it could be' !! .

I remember the euphoria 24 hours after I took the first dose of pred and felt 'normal' for the first time in I don't know how long. I've been through two sessions of trying to come off too fast and having flares, I'm now settled down to low dose maintenance possibly for the rest of my life, and recently having to accept that what was a satisfactory low dose for quite a while may have to be 'upped' again.

Finding this forum two years ago was miraculous, the support, exchange of ideas and information is truly a life saver. As always thanks to everyone.

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Agree the forum is a life saver!

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