Trauma and PMR. A question was raised about previous meds before PMR. Anyone with previous trauma and Trauma before PMR

[spiritlife]

I was on no drugs before PMR diagnosis, but had experienced big Traumas and little traumas. Might there be a connection of a stress on the central nervous system that overloaded our immune system? After 4 years I am on 3 mg and holding. After 2 years I developed afib, brought on by Prednisone. I am 85 years young. Continue to be as active as I can and grateful. I have doctor's who don't have a clue in what I have learned here. I could not have made it without all who contribute their stories of overcoming. God Bless you all.

[SheffieldJane]

It seems to fit a number of people’s stories along with unrelenting work or home stress and bereavement, especially the unexpected loss of a loved one. Final straw is often the development of an autoimmune disease.

[spiritlife]

Thank you for your feedback.

[DorsetLady PMRGCAuk volunteer]

Trauma [or stress] , whether mental or physical is a well documented pre cursor to PMR and/or GCA .

[Rachmaninov2]

I had been experiencing a huge amount of stress just before the first symptoms of PMR appeared. I just expected to be able to plough through it as I had done before but my body had other ideas, it had had enough.

[FRnina in reply to Rachmaninov2]

Same here. Was deaf and blind to what my own body was saying. Too much stiff upper lip and ploughing on as you say under chronic stress. Upside of the illness is you get to rethink and see another way to live. With much thanks to all the forum members who can show the way.

[spiritlife in reply to Rachmaninov2]

Yes, so difficult to slow down and listen to our bodies. Even now I want to plough thru. Now dealing with a bum right shoulder. MRI yesterday, with afib 3 hours before test scheduled. I made it, but am paying today. Thank you for being there.

[spiritlife in reply to Rachmaninov2]

Wonder when we will listen to those clues our body sends us? I am too much of a "me do" person. I guess that is part of the wee child that is still there.

[Rachmaninov2 in reply to spiritlife]

I have recently started to listen, because it’s shouting at me. I know that my body is in distress so I have to take responsibility and care for it. Going to give it some TLC, better late than never.

[9lives]

hi ,

Yes I suffered PCS (post concussion syndrome)for about 4 years, after a blow to the head . Prior to my diagnosis of PMR. In 2016. I’m now down to 1mg prednisone and just about to start reducing to 1/2 mg.

So possibly there is a connection , who knows x

Carole

[spiritlife in reply to 9lives]

Ouch. Kudos for getting to 1/2. Each time I taper a half from 3mg, the stress builds up. No pain, just feel more stressed. More irritable and sensitive.

[DorsetLady PMRGCAuk volunteer in reply to spiritlife]

Couple of things...maybe 3mg is what your body/illness needs at the moment, but could also be adrenals struggling - and that just takes time unfortunately - maybe have a look at this -

healthunlocked.com/pmrgcauk...

[spiritlife in reply to DorsetLady]

Thanks. Makes sense.

[PMRpro Ambassador]

Not in the few years preceding PMR starting up, But trauma has a very broad definition and can be physical, mental, emotional or due to surgery - all forms affect the immune system. It is rarely a single factor that triggers PMR but something is the straw that breaks the camels back and the immune system goes haywire and turns on the body, unable to recognise it as self.

A/fib is common as we age anyway and mine started along with the PMR symptoms at 52 and then steadily got worse. It is always worse when I flare so seems to be associated with the vasculitis and is more common in patients with various autoimmune disorders including PMR.

[Longtimer in reply to PMRpro]

Have been sent a letter requesting because of now being 70 to be involved in afib screening. Will do it, looks very easy, they will send me an ECG recording device, have to use it 4 times a day for 3 weeks.....press both thumbs on very small device, then send it back. Have you heard of this before?.Glad it looks easy, struggling with fibro now!.......

[PMRpro Ambassador in reply to Longtimer]

Sounds like a good idea - a/f is a massive silent killer and cause of stroke when not managed with anticoagulant therapy. Mind you - it won't identify patients if they have paroxysmal a/f unless they are very lucky

[Longtimer in reply to PMRpro]

Ok,Thought I would move my muscles very gently and post the reply form to them....big mistake, saw a neighbour 4 doors down near the letterbox, have never spoken to him before.....well, he was ranting and raving about the goverment....so political!!.......I only wanted to post my letter!!......😱

[PMRpro Ambassador in reply to Longtimer]

One of the nice things here - the government is nothing to do with me!!! I', now totally disenfranchised ...

[Longtimer in reply to PMRpro]

I can’t be bothered with politics anymore in fact never have really, so why he preached to me I’ll never know! His wife is Spanish . He said they owned a flat there, so I said why don’t you go and live there then..no, my wife is happy here and has a good circle of friends, I see her going out a lot…..no wonder!

[spiritlife in reply to PMRpro]

I think, for me, the afib is worse than PMR. Actually, the uncertainty of both are challenges each day. Yet everyday I am uplifted by what I read on this forum and the other forums. I am reading daily how important community is and gratitude is always at the top of my list for all of you.

[PMRpro Ambassador in reply to spiritlife]

Mine wasn't until recently. Yesterday was rubbish - today, not a sausage!

[spiritlife in reply to PMRpro]

Thank you for always responding with such clarity. I always come away with a pearl of knowledge no matter the subject. As opposed to the doctors, your response shows you are listening to each post and you back it up with your own experience. Would like to know if others who are tapering and are without pain, but with adrenals compromised, the stress of daily life seem to feel at time overwhelming.

[PMRpro Ambassador in reply to spiritlife]

Ask it as a new thread - only I and DorsetLady always see questions in the middle of threads. If you want maximum exposure of a question - new thread

[Sharitone]

I had a nasty accident with a lot of soft tissue damage, about 6 months before.

[Purpleazalia]

A 9-year run of stress - work stress with long hours was a constant, other things thrown into the mix, including 3 bereavements in a 6-month period.

[Linnetbird]

Diagnosed with PMR 2015, aged 65. Since only ever been able to successfully reduce to 5mg. No idea where PMR came from. Prior to a sudden inability to raise my arms/move, I was playing tennis twice a week, doing aerobics, pilates, walking at weekends. My Consultant 2020 decided to send me for Brain Scan which showed two major episodes of severe scarring. One recent, one 30 years ago. Recent Trauma corresponded to 3 years of stress around elderly parent care:- hospital visits/social services/ care home choices/ dementia/their death and funerals. This explained the current PMR. Trauma 30 years ago I was dealing with new baby born with disabilities and terminal illness. This explained the early brain scarring. Who knows what our bodies store up, cope with and only hit us in later life.

All best, Linnetbird

[LabradorH]

Thanks for the question, very relevant. I wasn’t really aware that trauma, stress was a well known precursor to PMR. In my case, my doctor encouraged me to think along these lines to explain why I have PMR. I had life-changing damage from a hit and run accident 9 years ago. I had multiple fractures - spine, pelvis, leg, ankle.. at age 60. At the time, the bone doctor expressed surprise that all the fractures healed, So it is a useful thesis that the PMR could be a result of stored up trauma from that time - maybe triggered by pandemic stress.. We all have that factor in the mix.

[Bramble2000]

maybe. I had serious trauma 5 years ago - husband of 17 years was arrested for downloading indecent images of children and eventually charged - and my world fell apart. I isn’t developed PMR, but, at the time I was 43. Six months before my PMR started, I became homeless with my child and lost everything due to domestic violence. I’m not sure we’ll ever get an answer to this. It could be the type of emotional response, due many traumas within a timeframe etc.

[spiritlife in reply to Bramble2000]

Thanks for sharing about such a painful time in your life. The body bears the burden and the immune system seems to show that. It is an interesting connection, but the hard work of moving thru PMR with all it's up and downs is the challenge. I hope each day brings something good that will lessen those past memories. I quote something that helped me, "my track record for making it thru the bad days is perfect".

[Alchemy8]

Gosh - bless you all and deep respect for all that you have carried and suffered. It is of course interesting that the majority of PMR sufferers are women. We don't even realise we are under stress because somehow the constant giving is our 'raison d'etre'. It is only a disease that acts as a wake up call and a means to explore a different way in the world where we can speak for ourselves, not just for others. And that is so important as otherwise we perpetuate this suffering.

Fo my part I think my stress goes back to birth trauma and then falling off a stool and hitting my head hard on a wooden desk about 6 months before I was diagnosed. As has been commented - it can be one thing that just triggers AID/PMR. However after three years of having given up paid work and working on many different ways of healing I am learning the lesson of being able to stand up for myself and more about myself as a human being. Such a learning curve - giving oneself space to be rather than do.