My husband said today well polymyalgia isn’t exactly an illness ! I thought walk in my shoes. Daily pain and a million and one other things. It’s not like when you have flu or something. 😩😩😩
Polymyalgia definition : My husband said today well... - PMRGCAuk
Polymyalgia definition
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Uglow
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I have had the odd remark over the years like that, especially, I told you what steroids would do to you!......he gets one of my looks that makes him do a hasty retreat!.....😠
My husband doesn't understand pills having never taken any. His mantra is "the body will heal itself in time". I have to go into a rant to get him to pipe down! It's very wearing as he's totally blinkered and against all drugs! 😡😡😡Best ignored tbh!
Exactly the same here...my husband is very fit, walks miles....and says the same as your husband, the medication is worse than the illness!....in fact he hasn`t been to the doctors for over 40 odd years!...I blame his late mother....she had everything wrong with her....but nothing, he heard her moan all his life....lived to 94!......My family and I think if he had anything wrong with him he wouldn`t take meds or go in hospital.....
Yes, best ignored, not worth stressing over it....I`m doing crosswords and listening to music, he is either in garden or watching TV.....
I make sure we have good meals.....
Ditto. But my hubby gets his good health from his mother. She had nothing to moan about and never did. When to the grave with nails painted! My friends don't understand steroids either apart from one who's had pmr for 10 years! My soul mate luckily.
That`s good you have a soul mate...I have some good friends...they knew me as the person before....and they know I hate not being independant.....my sister and I are very close, she has RA, and lives alone so she gets it....my other sister said maybe I`m addicted to steroids!...it takes all sorts...
Grrr - whereas when a friend says something like that you can either walk away or just say "hope you never get an auto-immune illness" and if they don't like the answer the choice is yours.
With a Husband or family that is not possible so follow this link
healthunlocked.com/pmrgcauk...
Then sit him down and tell him to watch it all and then he might see sense.
Alternatively give him a clip around the ear and say no treats till you watch this is full.
He's not still expecting you to do all the cooking and cleaning, etc, is he??Just make sure that every time you shift your position painfully in bed, it wakes him up!
😜Mine has got a bit more understanding, but I do understand that it is very tiresome to live with someone who is long-term sick.
Tbh he’s usually first class but I don’t understand how he could say this if he saw your remarks he’d be shocked. He does loads for me. But I was just soUpset by his stupid remark when Iv told him all
About it
Same here, he does most things, but I suppose he didn't expect PMR to go on for 10 years....but then neither did I!!
Ten years!! Oh dear, I wonder what we would have done if we 'knew' it could take ten years or more?
I was one of those who thought "not me - no way. I'm as fit as a fiddle". How wrong can you be?
Still, we've fought, moaned, screamed and, eventually, coped. Without this forum I would have gone under I am sure. However, we're still alive (perhaps not kicking) but able to enjoy life regardless.
All the best Longtimer. 💐💥
10 years noooo please noooo
Don't worry Uglow - very few have it more than four or five years (some are even luckier and it goes into remission in two years).
Longtimer and I have just been one of those unlucky ones.
Chin up! You'll make it! 🍀🍀💥💐🎄🎄
I hope so. Good luck to you
Thank you, and yes you are right, if we had known. I get angry when I see 2 years and it will be gone, because that is what I was told by the first Rheumie, and OH was with me, that's why he can't understand the 10 years, blaming ster oids.....and in some ways he's right (although I don't tell him that) because I now feel so weak and ill with adrenal sup pression.......he knows me as an independent person, but I can't even drive which I have done for nearly 50 years.....Iquite agree, up until this last year, this forum was the only place for advice and answers, till my Rheumatologist I have now. We are stronger together!......
All the best to you too....🙏
in reply to Longtimer
Never tell a man he’s right ! Hell think you mean all the time about everything and never stop being right - RIGHT ! 😜
cycli in reply to
no chance of that here stills. the wife knows she is right even when wrong. I have the same problem with trying to explain the condition you have with husbands.
Even I say it's a condition rather than an illness and I'm four and a half years in. I suppose like diabetes isn't an illness but is a very serious condition that needs special treatment.
Exactly...
I suggest he has a word with your doctor !
You could have a serious “relapse” and find that cooking, cleaning, rubbish-shifting, and all the other annoying housekeeping things that you normally do are too difficult. He might find that having to do all that wears him out even though he is fitter than you with your non-illness…
in reply to HalleysComet
Great idea, he’ll soon notice when he has no clean pants or socks!
cycli in reply to
that wouldn't work here as I do much of that anyway. Not everything is gender assosciated
in reply to cycli
If only there were more like you … 😉
Longtimer in reply to
I just iron the two fronts of his shirts!.....that`s on a good day!...
Ditto!🤪
Even with PMR, I have always done my own laundry (wash, dry, hang, fold, etc.). My wife has never ironed a shirt for me. I found, early on (when I lived in Bristol), how much I hated ironing dress shirts. When I got married, I assumed she would hate it as well, and have taken them to the cleaners our entire 48 years of marriage.I make the bed every morning, and wash and change the sheets weekly. As a general contractor, I came home fairly dirty from construction sites. Why would I expect her to clean up after me?We have a fairly peaceful marriage. She has never “clipped me behind the ear” nor withheld treats. 😎
Each to their own, in housework etc....I think we clean up behind each other. With Osteoarthritis in my spine as well as severe fatigue, making beds are a struggle for me...have to admit the bed linen sometimes goes longer than a week....Not all have same degree of PMR or adrenal symptoms....we do what we can....if not it gets left!....
PMRproAmbassador
An interesting read perhaps?
gmpmedical.com/illness-vs-d...
On that basis, unlike most autoimmune disorders, for the vast majority of patients PMR is an illness, it burns out and goes into remission and only rarely returns, OTOH - it is a disease because you don't know WHEN it will go away or even if it will, unlike with something like chicken pox which is gone once the blisters are scabbed over.
But what is inescapable is that PMR is a disease that makes you feel pretty ill! For a very long time ...
My gastro just said, “it’s a terrible terrible disease.”
Wow! Someone who knows!!!
When diagnosed I printed out a lot of info from this site, & drip fed it to my husband…first up was ‘the spoons’, so he’d know I wouldn’t have the same energy…it may be worth looking for things like that.l.it’s a less emotive way of telling him about it, & something he can absorb in his own time…& space! For other close members of the family I did something similar, too. When you have something none of your family have heard about, I think it’s helpful to them! Just a suggestion?! To be honest, I thought you lived on your own, after reading quite a few of your questions…he definitely needs to support you better, in my humble opinion!! Good luck!
My hubby can't even get his head round that I can't reach things that he can, being 5 ft 4 and not 6ft 3!
Well! That gave me the start of the day laugh!😂 Try pointing out all the things YOU can do and he can't. Write them down, bit by bit, till you have quite a few.🤪
Like doing this right now...hates anything like this ipad or phone etc...but is clever at mechanics, decorating, gardening....I pointed it out the other day when he tried to scroll down on here...too heavy handed, I said we are all good at different things...and that includes empathy!!
I know how that feels , I always look full of health with my pink cheeks , and I love to smile at people . I love music and dance , when I get the chance for a party , I enjoy a few glasses of wine which frees my body for a few hours. No one would ever believe how dreadful and painful you can feel. You just trust the people that really know and love understand what you are going through. Wishing you better days
It does take all kinds. When I was first married I was the healthy one, hubby had previously managed to get a medical exemption to the draft, mostly because of relatively minor but debilitating issues, like gut problems and chronic sinus trouble. I think when in the years since then I've had a few rather spectacular although infrequent health crises he hasn't really known how to deal with them. I've never really forgiven him for declaring when I was roughly three quarters the way through what ended up being 24 hours labour with our first child that he thought he was coming down with a sinus attack. Did I care? Did I even need to know? But this has been, until recently, fairly typical response. I don't think until about a year ago it had even registered with him what PMR is, or at least that was when I realized he didn't know.
Without the support of my better half, I would not have got through the past ten years. I am so lucky.
I have fibromyalgia and 3 months ago was diagnosed with Polymyalgia, I have had work colleagues describe it as 'scivers' disease, and members of my family say it doesn't exist. As you say, if they could walk in my shoes!
I’m sorry to hear this boo1961 😞
I expect you’ve tried to explain or showed some of them things like the Spoons theory post, or the video made by jinasc’s group for new patients and their families? (See FAQs)
All the best to you xx
I agree with what you are all saying . Polymyalgia is horrible . However I have decided to reduce the steroids and put up with the pain. My inflammatory markers are not particularly high but I have pain in many parts of my body. My mother had polymyalgia and was on steroids for 40 years …. Well, believe me , they destroy every part of your body . Your bones , your muscles, they make you fat and all the fat goes in the middle, they make your skin dry and after a while paper thin, they affect your mood, they affect your eye sight and they are a monstrous drug. I am not criticising any of you , please get me right, but the pain is almost better to put up with.
If you read the side effects on a packet of steroids you begin to wonder why would anyone take them ….. I know there is no choice for many but try and reduce ….. to taper if you possibly can .
I have been taking pred for more than 12 years - and I have none of the effects you describe, most of them can be imitigated when you know how. The fat depositis in particular - cut your carbs! I'm overweight, but then, I always have been. But I have a waist and no moonface. As for mood - I had PMR for 5 years undiagnosed and without pred, PMR can do a number on your mood, believe me!
I do find it difficult to believe your mother was on pred for PMR for 40 years - how old was she when it was diagnosed?
It isn't as simple as pred bad, no pred good, if you have PMR and don't take pred, it is more likely to progress to GCA according to experts and then you are looking at far higher doses that really do cause problems - but that is to protect your sight. There is no adverse effect of pred that is worse than total loss of vision and we get the relatives of 3 or 4 people every year on the forum that that has happened to. There are several members who are blind in one eye because PMR wasn't diagnosed and treated. Pred may cause cataracts and raised eye pressures - both of which can be treated and reversed quite simply. The sight loss in GCA is irreversible and permanent.
Any unmanaged inflammation also causes damage to the circulatory system and muscles in the background - and can lead to peripheral vascular disease and other unpleasant effects longterm. There is also an increased risk of stroke and other clot formation.
You may choose to tak those risks in view of your feelings about pred - but do it on informed basis.
Seven months into PMR, I developed Macular Degeneration in one eye. The Ophthalmologist suggested it might be caused from the Prednisone I was taking. That was last February, 2021. At his suggestion, and my rheumatologist help, I gradually switched from Prednisone (7mg) to Hydroxychloroquine and Folic Acid. It took a month to make the change, but it seems to have worked. Yes, I still wake with sore wrists or shoulder, but the PMR seems to still be under control. And the Macular Degeneration is retreating somewhat, as well.
That is interesting as anti inflammatory medication, like steroids, is used in treating macular degeneration. Can't win.
ncbi.nlm.nih.gov/pmc/articl...
Gosh, that’s really interesting Heron! I have dry AMD for which I’ve been told there’s no treatment as such. There was a major study which showed that supplements containing lutein, zinc and other elements (LMZ3) might help, so I take those and hope….🤞
Each dose contains:
Meso-zeaxanthin 10mg | Lutein 10mg | Zeaxanthin 2mg | Zinc 25mg | Vitamin C L-ascorbic acid 500mg | Vitamin E d-alpha tocopherol 268mg | Copper 2mg
I wrote a long reply a few hours ago but then my device froze. I didn't know there were different kinds of macular degeneration until this conversation. Loss of vision is always a worry. My husband is dealing with problems associated with glaucoma. He uses prednisolone drops in one of his eyes, where he had a corneal transplant a couple of years ago.
Hope the drops work in respect of your husband's glaucoma, Heron.
I’ve been concerned about my sight for a long time. My father had both AMD and glaucoma. He died nearly twenty years ago, but I remember him telling me never to ignore pain in and around the ear and jaw, because you could lose your sight…..he couldn’t explain the whys and wherefores and at the time I didn’t understand…..but now I wonder whether he had GCA….He was effectively blind for the last few years of his life.
I have appointments for cataract operations in January (Covid permitting) and have regular check ups at the opticians. We can only do our best 🧘♀️
Glad you made it to see your daughter and granddaughter 😊
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