PMRGCAuk

Why me?

Good morning all.

Whenever 'why me?' pops up in my mind I firmly slap it down. It's always an emotional and negative reaction to my GCA and PMR. I'm still interested in how and why in a general sense, though, so I was interested to find this link -

ncbi.nlm.nih.gov/pmc/articl...

while reading this in today's Guardian -

theguardian.com/commentisfr... .

It may help explain the relationship between my 25-year 'battle' with depression and current woes. The first link isn't recent but I wouldn't have found it without Mr Monbiot's help.

Skibo - diagnosed exactly two years ago, 60mg Pred at highest; currently dead chuffed at (finally) getting down to 15mg. So much for the 'two years'...

33 Replies
oldestnewest

FABULOUS article!!!! WOW! This is really amazing, but actually makes perfect, logical sense! Thank you so much for sharing!!!!!

Reply

Ta muchly. It does, and I hope that, one day, we'll understand a lot more about problems with the immune system.

Skibo (sneakily replying while at work...)

2 likes
Reply

Good for you.... life is TOO DAMN short!!!!

Reply

Thought provoking article. Thanks for sharing this Skibo.

1 like
Reply

Thank you very much for sharing thi link which, while being a subject for much further research also explains a lot.

1 like
Reply

Thanks for these links from me as well Skibo

I like Dr Helen Kingston's awareness of:

'patients who seemed defeated by the medicalisation of their lives: treated as if they were a cluster of symptoms rather than a human being who happened to have health problems'

The integration and interaction of social and 'scientific' research is a fascinating area and one which has relevance for almost everyone in some ways as it expands and explores our perceptions of health and well-being as being complex and multifaceted. Best of all it critiques dehumanisation which occurs (sadly) all too often.

Best wishes

Rimmy

2 likes
Reply

My pleasure Rimmy (and linda49 and CT-5012). I'm fortunate in having GPs, Rheumies and Nurses (and other specialists) who treat me as a human being. Still rattle with medications, though.

3 likes
Reply

Loved the article. Yesterday I attended a lecture on isolation, loneliness and friendship. It was given by social workers at my local Y. The biggest take way was a new word...friendfluence! I believe the strength of my emotional muscle regarding living with PMR comes from the support I receive on the forum. Thanks to everyone!

4 likes
Reply

Hi Sandy

It's definitely an improvement on relative isolation. I came across a French word recently - bienveillance - meaning 'looking out for'. I'll try to remember to use it when I'm in France the week after next.

Take care

Jim

1 like
Reply

Support from the forum is indeed good and we don't always get it from our nearest and dearest. My other half said he thought I am not getting what I think is the right treatment for my PMR "because it is not a recognisable disease." !!!! After almost 10 years of PMR and my full and detailed explanations, he still doesn't get it. I hit the roof, as you may imagine and as you will understand coming down from the roof made me feel more exhausted and ill. Perhaps we ought to all paint our faced with white makeup, blot out the colour and suck in our plump cheeks to stop people mistaking that rosy glow as us being really well, when we are feeling ill and exhausted.

4 likes
Reply

Not looking sick causes people not to believe there is anything wrong. In addition, our loved ones don’t want us to be sick! So sorry your husband doesn’t get it. Stories like yours make me so happy I live alone!

Compassion comes from fellow sufferers, hopefully friends (if not fire them) and yoga/mediation teachers. It all starts with self love, acceptance and understanding which is about as linear as this illness!

Reply

At my feeling worst I have said to OH, go away! I want to be ALONE! His bewildered response is "Why???" I don't have the energy to respond to that.

Reply

Use your energy to laugh, rest and write on the site! I have a cold, some pains from tapering which I started Sunday (12 to 11).

1 like
Reply

i think it is a man thing - I also want to be left alone when unwell, as do my daughters. You may stick your head around the door and offer and bring tea. Otherwise, b*$$"* off. And above all - DO NOT TOUCH...

2 likes
Reply

When I first got PMR and it was untreated it got the stage when I couldn't dress or get out of bed unaided. Prescribed Opiods helped until Pred kicked in. We had booked a holiday in Italy with four friends. I could not go and insisted my OH goes with our friends. He went protesting (just a little) and I started Pred the day they left. I gave in to being ill and staying in bed, except to get a little food that he had left in fridge and freezer, and waited until the storm had passed, and I could move to the sofa and TV after a week on Pred. OH rang every day, which began to irritate and after the first week he wanted to come home. No, no! I insisted he remain on holiday. Towards the end of the fortnight he said he was looking forward to coming home, but I was enjoying the quiet, the lack of fuss and said I would pay him to stay for a third week! He was a trifle hurt, to say the least. I was pleased to have him home again, but it was like your mantra in your last sentence, PMRpro.

1 like
Reply

All very true!

For looking well, like it says in the notice in the hospital - "people are treated in order of urgency, not by appointment - someone may look well but could actually be very ill".

Reply

Thanks for the new word. I’ll use it in NJ, NY and next week when I go to Dallas! Have fun in France!

1 like
Reply

Excellent article, than you for the link. In a nutshell what it is roundly explaining is what so many of us know has happened to us i.e. PMR was triggered by prolonged physical and or mental stress. Something's gotta give way and our immune systems did. In my case it was two decades of awful emotional stress and hard work.

4 likes
Reply

Indeed nevagivup. I wonder when they'll find a way of sorting us out using gene therapy. Too late for me, no doubt...

1 like
Reply

Never give up! :))

2 likes
Reply

I saw the link to Monbiot's article last night but didn't have time to read it. Brilliant.

Like the stuff about the role of stress on IL-6 production. So how stress fans the flames is not just imagination. And IL-6 is where tocilizumab acts.

ncbi.nlm.nih.gov/pmc/articl...

1 like
Reply

Yup. Maybe they'll get round to letting me have tocilizumab. Any word from NICE yet? Can't remember when the next review is/was...

Reply

Thank you for posting these interesting articles. I love reading things that affirm what I already believe to be true. I had low level, long term depression that lifted upon my first dose of Prednisalone. That alone has made this journey worthwhile. Inflammation! I knew the depression felt really physical - nobody listened.

4 likes
Reply

Hi SJ. I suppose medics can't know everything, and we know they can be opinionated and aloof. They must dread people like us turning up for appointments armed with (potentially) more knowledge than them.

1 like
Reply

But the really bad point is that depressive mood is listed as part of PMR. So really - there isn't a lot of excuse is there?

2 likes
Reply

True. Fortunately, my GP knows, and won't let me drop my dose of antidepressant.

2 likes
Reply

Both very thought-provoking articles. Thank you.

2 likes
Reply

Thanks to a recommendation on this forum I have the kind of Rheumatologist that likes an intelligent, enquiring, patient.

4 likes
Reply

Thank you for these articles- very thought provoking.

Reply

Fascinating article to see how many on here had major trauma/stress before diagnosis.

I have dealt with depression for years....one son with severe health issues. Then three years ago I moved at age 71 from my home of 40 years in Atlanta to a semi-rural area in California into an apartment with him to help him and share expenses. Left my college teaching job, artist friends, apartment, everything. Have still not adjusted to the move, don’t really like where I’m living, or made new friends, (not an extrovert anyway!), and he’s not the easiest person to live with.

Lo and behold last spring I became sick, first PMR?, then Graves’ disease last summer, when I was without a car for months. PMR/GCA diagnosed beginning of January. Now on 49 mg prednisone.

No wonder! My body was trying to tell me something....

1 like
Reply

40 mg, not 49

Reply

You can edit your post - click on the box next to More...

Reply

True info! Now I know why I want to stay home more and more, when we do go out it isn't for as long as before PMR..."the comfort of home"

2 likes
Reply

You may also like...