Underestimated in my opinion!! Even the best supporting Charity Forum seems to
have a problem with this!!
It's not all about the physical pain & medical science! Is it! ATB
The Underestimated Mental Impact of PMR/GCA!! - PMRGCAuk
The Underestimated Mental Impact of PMR/GCA!!
64 Replies
•
Too true PD!
Right from the early days when coming to terms with having the condition to dealing with changes in lifestyle etc the psycological support given by fellow sufferers is vital. When you can't get out to meet people like you used to virtual friends that can offer a word of support, reassurance or humour are a real life line. Just talking about our ailments can be depressing. A little ray of floral sunshine is priceless, lifting the spirits.
How are you doing my friend?
• in reply toscats
ok scats myself! Sez me! Hope a little ray of sunshine gets through to some who need it!!
scats• in reply to
I for one need it today, my legs gave up half way round Tescos even with the trolly I could barely move. Luckily OH was with me. I still shouldn't be allowed out by myself it seems!
• in reply toscats
Rock on Matey you do it beautifully.
Take care of yourself sweetie , perhaps we could all get trolleys with seats in that we fit in , it would help alot force in the shops xx
Do you think we could race them?
Your on!😋😁😂😂😂
I am not pushing either of you and I am not sure what I would have to plead in court defending you except to say you are both delinquent and very "special".
😂
Is this a heuchera?
• in reply toSoraya_PMR
Corydalis is the flowering plant. (usually yellow) Heuchera has self seeded in there!
Hollyseden• in reply to
Wow I'm delighted if heuchera survives a winter in my garden but self seeding is just showing off! 🌱😉
Very true!......
You're right. Even once the pain is dealt with through treatment there's still something particularly isolating about this disease. I don't know why it should be worse than many other physically limiting ailments; maybe it's just that hardly anyone has heard of it although PMR, if not GCA, is one of the most common chronic diseases in the old. And usually we look well, so it's hard for others to recognize that we are not really ourselves. Our communities don't validate our view of ourselves. So we turn to the only people who really understand, others with the same diagnosis, and often that has to be long distance, on line, forums like this.
• in reply toHeronNS
Spot on Heron.
I couldn't agree with you more PD - and on all counts. Keep up the good work here 
Totally agree.
Agree totally, made even worse when rheumatologist constantly queries diagnosis without offering any alternative. I do now have a definite diagnosis after nearly 3 years. I also have some horrible side effects from the treatment.
I am fortunate to have very supportive family but I do find it hard to bear sometimes as it affects them too.
• in reply toCally55
Three years is a long time to wait for a diagnosis Cally! I was lucky to have a definite biopsy diagnosis of GCA within a month of the first symptoms.
That is the beauty of an interactive forum where the mental health side can be played out with all our varying moods & frustrations. Sufferers understand & "get it"!
Mental health & support is the Cinderella of the Medical world in my opinion & is hugely underrated compared to surgery,medicine etc! It helps a lot when you're feeling good about yourself doesn't it! ATB
Marilyn1959• in reply to
Couldn't agree with you more Pepperdoggie. Mental health strategies / support / intervention needs investment at the proactive stage rather than the reactive stage when it is way too late!
Can I ask how they managed a definite diagnosis of GCA after 3 years? Doctors I’ve gone to in the past year doubt my having GCA, but like you say, have no advice as to what I have other than continue steroids. Is there a test?
Only if there is active inflammation after that long I'd think - although the ultrasound test might still show the left-overs at an earlier stage.
Its a long story, my GP diagnosed it initially from tender scalp, raised esr and crp, weight loss and strange leg symptoms(?claudication). Referred for biopsy, deafening silence from local hosp, appointment five weeks later by which time i had been 30 mg pred and PMR had joined in. She diagnosed pmr and put pred up to 40. She said I had wrong sort of headache for gca and referred to neurology, which took 6 months, also tested for cancer and other stuff. Neurologist said GCA a strong possibility, she still disputed it. Any way about 4 months later I spent 5 days in hospital with sepsis and my husband felt that as I nearly died from treatment for a disease i didn't have we would seek a second opinion from a leading rheumatologist, who said he thought it couldn't be anything else. By then rheumatologist 1 had gone and her replacement still doubted it! A year later after 2 failed goes with steroid sparer she referred me on nhs to another eminent specialist who decided i had almost certainly had it but was in remission then and prescribed azathioprine which enabled me to to reduce pred to 9.5 mg. Rheumatologist had trouble disguising her surprise at this diagnosis! Recent bout of bronchitis has sent me back to 12, and resulted in more vertebral fractures, coughing?, I don't know. I had some unusual manifestations, weight loss and food intolerances, the weirdest of which is capsicums and chili. Also tongue pain.
So I suppose diagnosis was about 18 months in but in NHS terms 3 years!
What was "the wrong sort of headache"?
Tender on the apex. That was why I went to the GP in the first place, I could no longer use a hairbrush!
Funny - I would NOT have said that was "the wrong sort"! Scalp pain and tenderness is pretty typical. Another place doctors have said the same thing about pain is at the back of the head - occipital, and the occipital region is favoured by GCA and is the most likely region to be associated with optic nerve problems.
I think that rheumatologist was not knowledgeable about GCA, the two top specialists I have seen thought it was classic. One of them told me the story of the London Hospital doorman who was the first recorded case of GCA who couldn't bear to wear his top hat!
My apex pain is now thought to be peripheral neuropathy, so they seem to be thinking that there is a relationship between GCA and nerve damage. I take pregabalin for this and I am inclined to think it helps.
There will be - poor blood flow to the scalp can progress as far as necrosis. In the meantime it will cause pain due to the effect on the local nerves which are not receiving the correct blood flow. That is what causes the damage to the optic nerve that leads to loss of vision.
Agree totally! 2 years plus into PMR and still struggling to come to terms with the loss of my previous active lifestyle.
• in reply toLyndab62
Yes Lynda it's one hell of an adjustment. Not far off 2 years myself. It's like a new identity has to emerge! Like many others the steroids have made a big difference to my moods & emotional reactions too.
On we go though & hope it burns itself out & have a few laughs on the way! There really is no other option! ATB
No we don’t Have any other option but to ‘grin and bear it’. Just coming out of a horrendous few weeks which started with a headache and being put on 40mgs of Pred due to possibility of GCA. GP decided as blood results ‘normal’ that I should come off the 40mgs pretty quickly. Half way down and a massive flare which resulted in paramedics as my husband thought I was having a stroke! Poor thing, he does go through the mill with me falling over and passing out! Still very dizzy and stomach not right but hopefully coming round to something like normal.
I am sorry to read your post, perhaps you would like to send it again as separate so that more people see it and can advise
Take care
I hope your GP is being more sensible now?
Inflammation of the body and brain go hand in hand.........the new theory of some psychiatrists. I would agree, but one can learn coping mechanisms. Mindfulness and Tai Chi have helped me. Me: PMR diagnosed June 2015, start on 15 mg Pred, now on 3mg plus complicated by 2x hip replacements in 2018.
Valerie
We are more than our physical symptoms. With PMR/GCA, once the medical aspects of these conditions are dealt with (diagnosis, pred treatment), we are still left with the psychological aspects of having a chronic illness and the side effects of treatment. No small feat. Throw in additional health issues that complicate things and we can be left feeling overwhelmed and isolated, misunderstood or not heard at all. For me, the 6 months before I was diagnosed took a huge toll on my mental health. I was certain I had something much worse as the pain advanced and I couldn’t hardly move, even had to use a wheelchair to get to my Dr appointment. My husband was in shock as was I because it just came on overnight.
With diagnosis comes relief, but then worry and pressure about taking/tapering pred. I went through the “5 stages of grief” literally, mourning the loss of the retirement I worked hard for not being able to enjoy golf, tennis and dancing. Others thought I looked “fine/normal”, which was/is frustrating. Acceptance finally came but not without help from my therapist. I had to re-learn to do things differently, a big adjustment.
Although I am managing fairly well now, I still find my condition impacts my relationships with others, which is the biggest challenge of late.
This forum and other online supports are vital. You folks “get it” in ways others don’t. For this I am eternally grateful!
• in reply toPMRCanada
You certainly "get it" & have a useful personal way of getting through with your therapy.
I would never knock good therapy! Had some myself!
Different we all are, but share the same illness plus other add on's usually! So true! ATB
I identify with every word of this. Except I don't have therapy. Try to do my own - w varying degrees of success. The impact on relationships w others is definitely a huge challenge.
I was struck by, "we can be left feeling overwhelmed and isolated, misunderstood or not heard at all." Hadn't fully realised it, but this has indeed been how I've often felt - left out and left behind.
It's so comforting to see my own feelings mirrored by another. We are not alone!
I so agree. In many ways the psychological impact of these diseases is the most challenging aspect. The individuals on this forum are the best antidote to despair I find. 🌸
• in reply toSheffieldJane
Yes. Really helps beyond all the great information & experience I find!
Yes agree entirely Pepperdoggie
I don't know how to express this but, despite good support from OH I feel that no one in my immediate circle really understand what it is like to have this ' thing' hanging over their head. I'm thoughroughly fed up with it all!!!! 2 years in and GCA hanging over my head ( biopsy tomorrow) feel really down. Any thoughts to cheer me up gratefully received!!!!
Having this 'thing' is like being wrapped in a cloak of invisibility, you're still there but nobody really sees 'you' and explanations can be exceedingly tedious (and still nobody really gets it). I'm with you on the fed upness of it all, BUT it's been a long winter and it's always the last hurdle that is nearly too much effort .. Just this evening, in the misty dusk, a blackbird was singing his heart out 
Good luck and thoughts for you tomorrow.
I can relate Hirwaen.
How to cheer you up..? In the absence of any sensible solutions, maybe have a peek at my (often, arguably) silly, Brain Fogged / Pred Headed / Semi Demented Posts whilst also under the influence of PMR / the Preds during the past 4 years? And, of course, the light-hearted Posts from many others here which often eclipse mine.
On the other hand, they might make you feel worse. Ohhh.... take your chances? 
Either way: it can help therapeutically / emotionally to try to see the Lighter Side of our ailments if we can, and to have a giggle or two - especially during the tough bits.
To my mind, and to echo Pepperdoggie's sentiments: for many of us, sharing some humour and humanity around our emotional challenges with PMR / GCA is as important as dialogue on the medical / practical side.
MB
• in reply toHirwaen
You've expressed the frustration beautifully! " You look well" "How's the problem"!
Dare say I've said similar stuff to others with illness's I knew nothing about!
Big learning curve it is Hirwaen. Hang in there & always look for the cheer. Plenty here.
I hope everything goes well for you tomorrow! I will be thinking of you. Was it Scubadiver who described his procedure with great clarity and humour a couple of weeks back? I remember thinking, well that doesn’t sound too bad. He and the surgeon were chatting about fishing. Tell us how it goes for you. Hugs x
Love yr blooms, Pepperdoggie. Reminds me of a picture I used to have, of daisies coming up between paving stones. Ie, no matter how bleak the circumstances, something beautiful can emerge. Perhaps a message to hang on to.
Been experiencing rather a bleak patch myself - particularly grumpy and knackered for no discernible reason. Needed a ray of hope.
Thanks.
Well said Bonny, I can relate
• in reply toBonnyQuine
Thank you Bonny. "Grumpy & Knackered"! What a double act eh! Often incur the two roles myself!!
Riding the ups & downers is the sensible way! But who the hell is that sensible!
Think Nature is always there if we take time to look. Just about keeps me sane! ATB
Me too! A pair of Bullfinches living in the Laurel tree outside my kitchen window, politely feeding together at the bird feeder.
• in reply toSheffieldJane
Lucky you Jane. A rare sight they are here!
Would you like any Wood pigeons sending we've got a lot!
SheffieldJane• in reply to
I have those too, like big comical hens, ground feeding underneath the Chaffinches. I love the cooing.
You have clever pigeons then, they have the sense to ground feed. Mine are daft. They land on the bird feeding station and rock it like an upside down pendulum they are so heavy They can feed off the trays but they look so stupid at the feeders 🙄. I do love they make though. Very calming
Thank you PDog for starting such an important talking point and for the photo of your flowers.
Jumping on to this forum after suffering various degrees of pain is a real life saver when you've spent the day feeling like you are often screaming in silence .
Finding posts like yours with a little snapshot of something beautiful , or the odd success story from other sufferers , shakes me out of the gloom and reminds me what the outside world looks like, and that I am still connected to it.
This is something many of us lose when we are trying to reach diagnosis , or are still running through the rough patches of these diseases , especially if the only people we get to see and talk to are our Doctors ( whom don't listen ) or our Nearest and Dearest ( whom we don't want to tell the full truth to).
Forums like these remind us that we are not alone and not going insane.
And chatting with fellow sufferers remind us that we can still laugh , chat , be supportive and enjoy normal things because we are still allowed to be ourselves despite having PMR/ GCA.
Learning to cope with the " New Normal" and being able discuss our illness with people who realise we are still functioning , intelligent adults despite our condition are two of the most important ways we can help our Mental Health with PMR/ GCA and each other.
This forum helps us maintain the Patience and Serenity we need when the rest of the World is testing us to the limit.
Big healing hugs Captain PDog and all on the HMS PMR/ GCA , let's hope there's more smooth sailing from here on in, bee xx
• in reply toBlearyeyed
Land Ahoy Bee! Full Steam Ahead!
This post has settled on my shoulders like a warm comforting coat. Its been one of those days (weeks), and reading about other's experiences has help me validate my own.
Thank you all...and the photo is of my favorite flowers!
Heppy spring, Jerri
• in reply toPurplecrow
That's a lovely image Jerri. Happy Spring to you.
I agree!
Well said Pepperdoggie,l,always enjoy you posts,keep up the good work of cheering us all up x
Hear, hear Patricia.
So pleased to see you here Mark,l hope you are well and no longer needing the pred.
Thanks Patricia
Well, I'm still here despite chucking my toys out of the pram recently. Conclusion? This forum / You Lot matter greatly to me despite my opinions about some of the recent, er, well... better not say more...
I'm relatively ok thanks. After hovering around 2 mgpd Pred for months, I've had a week at Zero - and with negligible PMR symptoms apart from continuing DF (Deathly Fatigue). That said, the DF is less frequent / intense despite being more active: so things are looking good generally. I feel fortunate compared with many here.
All the same, I am pressing my GP for a referral for a Synacthen (ACTH) test to see if my Adrenals are in fact working (or can work..!) just in case I have any long-tem damage from Pred treatment and / or need to stay on the Preds for life. There was a Post about this issue recently - very interesting.
In the meantime, I hope you're ok and coping on the Journey
Best wishes and try to keep smiling
MB
Thank you Mark,l am pleased that you are feeling good and off the pred,l only managed to get down to 3mg,then back up to 5 mg.about six months ago.l am only just managing on this dose,l also get the DF,l am hoping some better weather and lighter evenings will boost my energy .l am so pleased you are back here and l am sure everyone else is too.Blee’s post was lovely,she gives us all so much support.Take care Mark,l hope Tedski is not giving you too much trouble !ATB.
Thank you guys, I had the ' procedure which was quite an experience, almost an hour under a green surgical cover!!! As an X nurse I coped well😀😀😀. but had committed to babysit the youngest of the gang of three on Saturday. Needless to say, knackered on return to home on Sunday night. 'Resting' today and awaiting result of biopsy which will in all likelihood be negative for GCA. This will not explain the persistent headache!!!!! I knew when I started this hare running that it was probably a false alarm but couldn't take a chance!!! Thanks for all input, will let you know what happens next.😊
Thank you Hirwaen
I am pleased you have had the biopsy if it is positive it will justify the steroid load.
Perhaps you could post this separately as it’s getting lost in this thread
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