I get very frustrated with what my son cleverly terms the "self-appointed lifestyle gurus" who immediately launch into litanies like "oh Don't take Prednisone it's POISON! Just eat tumeric or cinnamon or garlic or cerapeptase or or or "....
One of the main reasons I tell very few people ab... - PMRGCAuk
One of the main reasons I tell very few people about PMR...
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SheilasPMR
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•
PMRproAmbassador
Get enough of them appearing on the forums!!!!
• in reply toPMRpro
Yes, we had one last night but he is no longer!.....
Murder she said .... 
• in reply to
I am sure "he" it/they have popped up before.
• in reply to
The ones that really annoy me are the ones that post on the Breast Cancer Site, offering all sorts of ‘Cures’ to desperate ladies.......
• in reply to
Yep. It's very easy and sleazy to prey on the vulnerable.
Yellowbluebell• in reply to
That just a form of sickness preying on vulnerable people
Unfortunately , it's a sickness even Pred can't cure , but perhaps a mallet would 🔨
Oh please can I volunteer for that job?!!!!!
We can share , I bet everybody would like a go !
Of course we would all like to imagine some delinquent weirdo just asking to be hit over and over again with a mallett. Bliss!
• in reply toYellowbluebell
I am more inclined to cattle prods.
Yellowbluebell• in reply to
They do have the added advantage of electricity flowing through them!!
Don't , I've got a Clinic appointment on Tuesday and if they don't sort my doseage this time the idea of a mallet and cattle prod are getting more tempting by the minute!
I very nearly beat the neurologist round the head with my book when he thought giving me a pamphlet about "your headaches and you" was a good idea , for a person whose had two types of cranial neuralgia for the last ten years even before GCA/ PMR !
I looked at him , his student looked at him , the nurse looked at me.
They both waited for a very rude response , I calmly grinned and said , " oh well , a pamphlet introducing me to headaches , I am sure that will be very useful!!"
Apparently , ten years of suffering migraines and neuralgia and then GCA wasn't enough of an introduction....
I wouldn't have grinned! I will leave the guessing about what I would have done too the imagination but bear in mind how many years I spent in a courtroom listening to total garbage!!!
• in reply toBlearyeyed
Mine appts usually go...you're fat you're fat, have you been weighed, the pred won't work as well for a fatty but you might be on pred for years. Ok I have paraphrased or is that translated but that was the general gist.
Appts last 7 mins
Blearyeyed• in reply to
Just shocked now!!
• in reply toBlearyeyed
I do find it funny and if I have the energy I will do the old " my god I didn't know.(cry) why has no one ever told me. Not just Rheumy EVERY DR.
• in reply toBlearyeyed
I did write up some research done on sexuality gender and stereotypical tropes and motifs. Quite an eye opener for me.
Yellowbluebell• in reply to
I was expecting the usual short 10 min appt yesterday with my gp but I had a list and he said "give it to me and let's see if anything is connected". Nearly 25 mins later I emerge unable to talk and wondered what the hell had happened to my normal 'can be grumpy' gp!! Not moaning about him again!!
Wonderful!
My GP is so wonderful, each appointment 20 minutes, or longer if necessary. He is very positive and encouraging regarding my weight loss and slow taper. He doesn’t even talk about getting down to “0”, rather shot for 5mg and stay there (which makes it all seem doable).
Hope you continue to see this good side of your GP in the future.
Lovely 👍
thanks-you made me laugh,i needed that
Sounds like the Orient Express! 😂
If you're the one that can lift it the jobs yours!
Hi Sheila
I completely understand your frustration.
Tell us a little about yourself. How long have you been on Prednisone ?
Have you tapered down. ?
Kids can sometimes drive you crazy. They believe they know everything. At every age.
The decision is in your hands, whether or not you listen to people here , who are donating their personal experiences and also some very kind ladies, who have volunteered to moderate this forum.
Good luck and please don't take to heart ...
Kids will be kids.
You can explain to your son, that this forum is run on the principal to help folks reduce Prednisone asap without any reoccurring symptoms. (Using the slow reduction)
We all realize that cortisone is not a complimentary treatment , but it's been proven , that this medication is the only one which will treat pmr ...
YuliK
I may be wrong but I don't think Sheila's son is one - "SALGs" is what he has christened these people!! Sheila has been a member of the community for some time.
Right you are! I have loved the term ever since he coined it after moving here to the west coast where they seem to gather in droves. And thank you now I have will add the acronym SALG to my vocabulary. Love it!
• in reply toYuliK
Interesting !!
I always say "opinions are like belly buttons.....everybody had one"
• in reply to
Belly button is the polite version😁
I find it literally makes my body hurt when I am told such things. It's the fact that it carries with it the idea that because I take pred I am not high minded or evolved enough to understand. There's nothing wrong with complementing your pharma approach (albeit with full understanding of the interaction of each addition). But I do understand the issues with pred, it works for me and it's my choice. 😐
I usually ask them where they studied Medicine & that usually stops them in their tracks!
I love your son’s acronym 😉
• in reply to
Or, ‘Gosh, I didn’t know you were a Doctor?’ 😂
Just say, wait till you are in my situation, which I hope never, ever happens to you.
The smile and terminate the conversation and move on to asking 'how are you?'
It's great to use all the natural and self help remedies as part of our arsenal against the enemy. I do use them and suggest them if they have helped me as add ons to help us cope with the effect of symptoms and the drug side effects then they're great.
But , I am yet to find anyone who has actually suffered from a disease like PMR or GCA who doesn't want to kill someone who tries to tell you that you should ditch the drugs.
We all know drugs are toxic but not as toxic as someone spitting in your eye and trying to shame you for relying on the only thing that stands you up when you're falling down.
I have known alot of people over the years who preached to the already health conscious
( i.e: ME!!) about how to have a healthier lifestyle , or how I would feel better if I didn't take meds or hadn't had vaccinations , or stuck my head in a barrel of mud and chanted
" Dixie" blah , blah, blah , arghhh!!!!
Not one , after actually getting a long term illness themselves lasted more than a week before starting the meds , but then being really quiet about it. Never acknowledging their previous mistakes.
The favourite comment I got from one of these " SALGS" whom used to look down her nose at me for clearly " not looking after myself properly" , when they got a chronic pain illness themselves was , " Well I had no choice because I have something that's really serious"!!!!!!!
If I had , had the energy to punch them I don't think they'd have landed back on Earth until they had made orbit twice around the Moon. Argh!!!!!!
Enjoy your toxins , preferably with relish, in front of a SALG, just after they've preached at you 😋😁😄xxx
• in reply toBlearyeyed
Air punch🤜
As always Bee. We'll said. X
Yes, I`ve learned to live with that....but my own GP says pred is poison to which I replied isn`t all medicine then...reply....well yes I suppose so...she caught me on a day when I was not putting up with any you know what!
Most of us have had the same reaction from our GPs. Very few know how hard PMR/GCA is for us to handle.
Good for you, 👏giving your Doctor some of her own medicine. ( no pun intended )
YuliK to Longtimer. 🌷
Suppose it all depends what you want to kill off ...
Dodgy gp's, rheumies and all other quack professionals!!
To be honest, the GP who diagnosed me was very cautious and sceptical about any rapid tapers.
Thank God, neither my GP nor Rheumy are like that, but I am embarrassed to say that when one of my "friends" suggest something ( as if I haven't thought of it myself), I get stumped and seem to lose all my intelligence. Inside I am seething . It is one of the worst social things about having a chronic illness, I think, and it makes me feel different from my social circle. I must add that I have decided to "lose" some of these people, for that reason- no bad thing probably!
I have decided to play it down. Just say 'oh it's boring' rather than be classed as a moaner or given little pep talks about getting older. My OH understands. That's all that matters.
I don't moan but I tell it as it is now , simple facts with a smile.
It means if they don't like it , or aren't willing to understand , that I can't do what I did or have to cancel something at short notice then it's not going to be because I haven't kindly but honestly told people what it is and what it does . It's because they didn't really care in the first place.
I gave up sugar coating or hiding behind other excuses a while a go now and it has made the stress of it all a hell of alot easier.
I know who my friends are now too , which is a silver lining , no more time being wasted on people who only care about how things appear or what you do for them , means I can focus what time I do have on people that really matter.
GCA/ PMR , the cure from being drowned in social activity with the superficial and insincere!
You suddenly become very aware of who your real friends are!!
I must have been lucky as most people I've spoken to are well aware of the necessity to take prednisolone for various ailments even if they haven't heard of GCA or PMR. I had one funny experience when I first told my grandson that I had to take steroids every day. He was 17 at the time and going to a sports college, where it was drummed into them that they must never be tempted to take anabolic steroids under any circumstances. He went white and said 'You can't take those Granny. They do terrible things to your body!' I told him that corticosteroids were very different, but I know he checked with Doctor Google before accepting what I said.
Bless, what a lovely caring grandson x
PMRproAmbassador
SALG, not SLAG!!!!
All I can say is that you, like Marijo, must have a different sort of circle of acquaintances!!
Just give him a slap, then blame the pred xxxx
I could have died when a doctors daughter said not to take pred. I had GCA! And then there are the ones who say they have just read about a magical cure for fibromyalgia when I have poly ...... I know they mean well but they drive one mad!
• in reply toDaisyroo
If long words confuse them I have little faith in their suggestions.
so many people mix up fibromyalgia with polymayalgia.
Including healthcare professionals ...
I had one the other day, who after describing what deadly fatigue is like, told my husband I just need to have spirulina everyday. I know she was trying to help.
You might love you friends and like me you probably try to be understanding of the fact that as they are well , and with no experience of " actual " Fatigue , they don't realise that merely looking after yourself won't do it anymore .
Yet , sometimes you do have to think behind the " thank you I'll try that " smile ,
" I wish I could hire a gang of thugs to beat you up , then dump you on a fairground Waltzer and make you ride it fast for a week , and then when they let you off I will suggest Spirulina to you , do you think it would help?!!"
It's the only way to survive for me , my serenity is fuelled by a very dark imagination 😋😁😁😘
• in reply toBlearyeyed
😂😂😂
Yes , people probably read your comment about seeing PMR as a 'Blessing' with a huge shock , but when you've spent years with cranial neuralgia ( Trigeminal and Occipital for me ) and literally had no escape from the pain despite the various drugs and procedures that really is the truth of it , it was a blessing to get an illness that had the option of treating the pain even if it wasn't a cure.
You don't really know what side effects are until you've spent months drugged up on anticonvulsants that make you more dizzy and drowsy and uncoordinated than a drunken tramp just to make your head pain reduce enough to make it possible to open your eyes and stop crying.
GCA is horrible and I wouldn't curse my worst enemy with it , but for me , like you , it was just another in a long line of intense pain related illnesses , but with the bonus that its treatment hit the nail on the head of all the rest.
I would not have thought of GCA as a blessing if it hadn't been caught early and it had taken my vision , as an artist it's my first health priority , but when the Opthamologist was willing to consider it ( despite my young age , then 47) and I had that very first high dose session of Pred it was the first time I had felt any relief in over eight years.
No headache without having to walk around like an extra in Trainspotting.
Being able to get out of bed in the morning without having to wait for the drugs to slightly numb the pain in back and joints.
Being able to brush your hair without spending an hour waiting for the throbbing in your head and ears to calm down.
Unfortunately the pain is back with the low maintenance doseage to the level of the hateful old days until I can get a confirmed diagnosis on my other AI / Connective Tissue issues.
Yes , my Body has found the one way to be able to attack me again , even I wouldn't want to take keeping the chance with steroids if it means my whole system might start to fall apart from lack of collagen.
I really do wish I knew what I had done to make this old body of mine so mad!
But fingers crossed , next week they will make their decision and allow them to increase my dose , or be allowed to prescribe the alternatives , not just to protect my sight but let me live a semi normal life again.
Keep in touch , bee x
On sounds awful. I hope you get sorted with some relief. Best wishes. Let us know.
PMRproAmbassador
My friend does this, she means well but I now look her straight in the eyes and say if it's living no life without the help of a strong medicine or taking it then it's a no brainer to me! She spends a fortune on stuff for imaginary illnesses she might get, that's madness.
Yes let's all take an over the counter anti inflammatory and then we'll be well! Wish I had thought of that. Chuckleheads as my husband says.
Yep, had this constantly over the last 3 years. Its still Pred that keeps me going and enables me to have some sort of life!
It's so true. Nobody hates Pred more than I do, and I am really hoping not to have to go back on it for the 3rd time, but as you said, when you need it you need it and my heart goes out to every one of you who are still on it.
I am with you on this one!!! I never tell people about any illness I have or my husband. Unless of course they see me lying on the pavement.
• in reply toyogabonnie
Have been there...pavements , grass, cinema, shopping malls. And that was before PMR. It really freaks the people that mix fibromyalgia and pmr up that I have both. We have to find our jolly's where we can.
When I was having a gym induction I said my muscles were weak from taking a lot of steroids and the man looked terrified. It took me ages to realise what I had said without explaining my illness. And I used to work in substance misuse and advise anabolic steroid users of the dangers.
An alt med believer once told me I had GCA because I 'allowed' myself to get stressed. Fortunately for him I was dealing with the stress by then so I just walked away.
• in reply toHellyowl
It's another one who needs acquainting with a cattle prod.
I commented on another thread about this just a few days ago. My sister-in-law who I can't, unfortunately, unfriend, went into a ranting tirade about this very thing and insisted she knew best, blah blah. Just exactly along the lines you said with other nuances. I then provided her with some of PMRPRo's detailed information about this disease which she promptly refused to accept. Finally I messaged her back "seriously?" and refused to engage with her on that topic anymore. Oh Lord. I was so angry that day at her presumption, ignorance and mainly her view of life making her the queen of knowledge. I have a number of friends and coworkers like that. I still share some of frustrations as I feel I have just as much right to share as they do in other areas. So annoying. Self appointed lifestyle gurus - a perfect description!
Maybe, one day, she may find out for herself ...
This sounds like my own sister....a self appointed lifestyle guru and queen of knowledge!
Not easy to ignore and unfriend.
I feel sorry for you at family occasions , you must need to grit your teeth so hard they rattle.
That's the worst form of the type , when you show them the real facts and they just flatly refused to acknowledge it because it doesn't fit in with their belief system.
It's not even that you disagree that many of the lifestyle changes aren't useful and good for you , just that they need to be used along side medicine when you actually have a disease.
But , then there are all these gurus out there at the moment exclaiming that vinegar and brown paper ( or something like it !) can cure your cancer , so clearly their sort of advice is far more credible than that of a group of people that have trained in medicine or suffered from a disease for years.
Perhaps you should give all of your friends some sort of gift pack filled with all the things they try to persuade you to use and then take their prescriptions away when they finally get sick.
Take care , you very patient soul xx
All drugs are poison but when you need them you need them.
And don’t forget the ones that just look at you sceptically and tell you that your face always looked like that!!! 😱🧐🤬
Well that “poison” sure made a lot of people feel a whole lot better. No doctor should ever body shame a patient. That is shameful.
My OH and children including their OH's are very good. they know I don't like to think about my illness all the time so they treat me like a normally fit person and rely on me to say if I am having a bad day. I wish my wider family and some 'acquaintances' not friends, could do that.
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