PMR/GCA 'STRESSES' AND THE COMPLEX 'REALITIES' OF OUR OWN WORLDS

[Rimmy]

There has been plenty of discussion on HU lately about what is or is not 'appropriate' in terms of what we might post here. I have always been described as 'opinionated' and have never had a problem with that as I think it is fine to express a point of view - but generally I have most respect for those who have made an effort to educate themselves about a subject area - which is to have read and thought about a spectrum of 'opinions' and realise that a database of 'one' is not equivalent to years of research on virtually any 'subject'. On the other hand I recognise all human experiences have 'unique' qualities and we can never tell a person their thinking and feelings are totally 'wrong' even if we vehemently disagree with them - but we can debate anything in a civil and thoughtful fashion.

The relationships between our internal and external worlds is obviously always complicated and despite what we share here in terms of our experiences we will all inevitably struggle at some point with these awful AI diseases and maybe several 'others' as we age. So being able to talk about our feelings and sometimes lighten the 'load' can be every bit as beneficial for our health as a prescription, a drug or even an 'operation'. So to distinguish between physical, emotional and mental states of well-being is almost impossible in the end although certain 'areas' may require specific attention at any point in time.

We also all know - and this has been well considered here - that 'stress' is usually NOT a 'good' thing in our lives - and that it can precipitate as well as extenuate illness and create more 'dis-ease'. Conversely, I'm not proposing there are miraculous recoveries in an ideal world of 'peace and harmony' as some 'stress' is clearly necessary and can also be positive at times - but there are degrees, types and contexts where we feel out of control and worn down and we KNOW things aren't 'right' - either for ourselves or those around us.

Obviously any 'extra' 'bad stuff' won't help any of us recover faster from PMR and or GCA so it is a shame that some forum members have felt unduly targeted for the nature of their posts - however 'problematic' they were determined to be. I also have said I have likely posted things here that some might not have considered directly enough related to PMR/GCA but as I maintain that we live in interconnected 'worlds' unless this site identifies as purely 'clinical' then we need some reasonable latitude to feel we are NOT stepping on eggshells when talking about our feelings and activities ...

While we may not 'need' things like multiple birthday posts etc surely this hardly matters in the scheme of things & feel the relaxed atmosphere of HU has somehow changed and I for one am a bit sad about that. The fact I have experienced a 'flare' during all this is probably just coincidental - I have also been dealing with other stressful things which are too unpleasant to discuss here and of a political nature.

I will stay a member for now as I really appreciate the information and education I have gained here - but it is likely will not post as often.

Best wishes to everyone

Rimmy

Pic - Climbing roses and White Valerian at our orchard in Spring

[Daisychain12]

Darling Rimmy. How beautifully you express this. Yes. I agree with you and I am very sorry you are flaring. Coincidence or not its timing makes one think! I’ve been very unwell since the big change here too. If there is anything I can do to help please pm me

PMR is soooo complex. As you say, it is impossible to separate our inner and outer selves at times. I know that, for me, I probably spoke too openly here. I wanted to reach and help those who were deeply sad because of this ghastly illness. By showing them that despite my terrible steroid side effects and the PMR symptoms I could still find humour and silliness. I know it helped because many people told me so. Mark does this brilliantly with his tales. But admin see things as being out of kilter and I must confess I can’t find my feet here now. I can only be me and I can’t self censor as much as the forum requires. I’ve realised that now.

Rimmy thank you for clarifying. It’s a dreadful burden to have PMR. My heart goes out to all xxxxx

[markbenjamin57 in reply to Daisychain12]

'..MB? Brilliantly? Tales etc..'? Well, all I can say is try my best

[SheffieldJane]

A thoughtful wise post as always Rimmy! 🌻

[Daisychain12 in reply to SheffieldJane]

Isn't Rimmy wonderful xxx

[Angiejnz]

Agreed, ditto

[MamaBeagle]

Agree totally Rimmy. Thank you got expressing so eloquently how many of us feel.

[Daisychain12 in reply to MamaBeagle]

Hi darling Mama! I still can't find the message I know you sent me, I must be going mad(der) lol. I hope you are recovering well. I think of you often and send you love. To keep the rules, I am going to ask you how your pmr is but it's fine if you don't want to share. I get to the point where I want to scream rather than go on about my symptoms yet I want to stay in touch with some of you wonderful friends here. xxxx

[MamaBeagle in reply to Daisychain12]

Dear DC, I'm so pleased you are obeying the rules! I'm hoping my PMR isn't going to flare! I'm now 12 days post op following an anterior bladder repair. Apologies to anyone reading this as it maybe tmi (too much information!). All we well. Surgeon very pleased with himself! Then it went a bit pearshaped.....wateterworks we t on strike for 10 days and unsurprisingly I now have a UTI. Antibiotics making feel nauseous. Otherwise all is well and mustn't complain. My lovely no.1 son is nursing his wife through end stage lung cancer...... got to grab life whilst you can.

[Daisychain12 in reply to MamaBeagle]

Oh no. I’m so so sorry darling. Your poor son and dil. It’s tragic and of course I have no words to help. Oh dear it’s heartbreaking.

Regarding you sweetheart are you on flagyll? It’s a very good drug for uti but oh the side effects are ghastly. There is another excellent drug called Alprim which seems less upsetting. It would have been a real ordeal to go through that

Love to you and your family at this very difficult time xxx

[MamaBeagle in reply to Daisychain12]

Thank you DC, I knew you'd understand. It is a difficult the, it's awful watching someone you love suffer. As for the waterworks I'm on Nitrofurantoin which is apparently well known in predictive text! Brand name is MacroBID, thats what it says on the box! Has the black dog slinked off for the moment?

[Daisychain12 in reply to MamaBeagle]

Darling it’s nearly midnight here and mornings are the worst. I’m a bit better today. Thank you xxx. I wish I could help. I feel so sad for you. I’m thinking of you xxxx

[MamaBeagle in reply to Daisychain12]

That's good to know. You do a lot just by listening and sending support through the ether. Sleep well honey xx

[Telian in reply to MamaBeagle]

Hi MamaBeagle

I’m on another course of MacroBid and it’s not working this time on my UTI. Is yours responding to treatment? Thankfully I have a Urology appointment on Monday. Hope you feel better soon - symptoms seem to get worse each time - my second UTI this year.

[MamaBeagle in reply to Telian]

I've got this infection post op and post 3 catheterizations and the a few days of self catheterising....I went to the docs as soon as I recognised it for what it was. I have had one previous UTI about 40 years ago! That I hope gives a context to current problem. I thought these antibiotics were working as I peeing less frequently and less discomfort. I am drinking lots of water but I am peeing quite frequently. I'm half way through the 3 day course....as to whether they are working? I would say the jury's out at the moment...let me know how you get on with the urologists, good luck.

[Telian in reply to MamaBeagle]

You seem to have reason for yours and I hope you do improve..... Mine come and go quite frequently for no apparent reason and I’m now convinced it’s because it never gets fully treated. Will be interesting to see what Monday brings! I think mine is now antibiotic resistant - a North London Professor - wish I could find the article he wrote - is doing a piece of work on women suffering chronic UTI symptoms when they don’t have any infection registering. That’s my problem - been two years since UTI treatment and symptoms remain regardless there’s an infection - blood always present. Had all the checks - nothing ever to report. They don’t know what to do.

[PMRpro Ambassador in reply to Telian]

Do you mean this work I posted about a week or so ago?

healthunlocked.com/lupusuk/...

[MamaBeagle in reply to PMRpro]

Pro, you're a mind reader!

[PMRpro Ambassador in reply to MamaBeagle]

[Telian in reply to PMRpro]

Yep! Ta very muchly...

[MamaBeagle in reply to Telian]

I feel for you. I found an article a few days ago about uti's which had got into the lining of the bladder and had become antibiotic resistant. And now I can't find it either! There was some kindest of -----citrate mentioned if I remember correctly. If I find it again I'll let you know, Telian. My mother had a chronic UTI and I mean chronic, she'd had it on and off for over 40 years. I managed to get it under control by insisting she drank water.....2 or 3 litres a day.

[PMRpro Ambassador in reply to MamaBeagle]

I've just posted the link to my post! Just above your post...

[Hidden in reply to MamaBeagle]

‘Mist Pot Cit’ ~ also known as Potassium Citrate Mixture, l did see the Post also. It’s an ‘old fashioned’ remedy but it works for some as it helps to make urine less acidic.

[MamaBeagle in reply to Hidden]

Thanks, Mrs N. Pro just posted the link I'd read. Can you buy this stuff from the chemists?

[Hidden in reply to MamaBeagle]

You always used to be able to buy it from the Pharmacy counter. It certainly makes peeing a little less 😖 painful.

Best Wishes 🍀

I have long standing Kidney pain but don’t t have any urinary tract symptoms just the pain in my back, GP says the Pred is masking some of the symptoms!

[ClarkB in reply to MamaBeagle]

D-Mannose capsules (also tablet and powder form) were recommended to me, and approved by doctor. They are a natural urinary tract & bladder support. I took them a couple of years ago and bought them online. There were several very good reviews from people (who said they previously never wrote reviews, but had to with this product! ) who couldn’t tolerate prescription meds. They were expensive though- 500mg £11.97 1000mg double strength £27.99. Anyway worth checking out, and reading other people’s comments.

[MamaBeagle in reply to ClarkB]

And they worked for you,CB?

[MamaBeagle in reply to MamaBeagle]

Just found them on Amazon. Ordered them on prime so should arrive tomorrow. Thank you CB I hope Telian is reading all these replies it is really kind of folks to be concerned and offer their various wisdoms.

[ClarkB in reply to MamaBeagle]

I hope they will help. You can but try! Did you read the reviews? They’re what I thought might influence your decision rather than my own experience in this instance. I’m the one usually seeking advice, and am only usually able to comment on my own situation. I depend on others for more informed information!

[Telian in reply to MamaBeagle]

I take D-Mannose. Interestingly enough after two days of starting them I got a UTI - PMRpro said it could have been clearing out residue of a previous infection that could linger in small pockets - (she sent me the article from the DM but can’t find it yet and want to show it on Monday). The D-Mannose helped a little but didn’t take symptoms away completely. I’ve been taking two 500mg capsules a day for six months. Last week I decided to take the maximum dose of 3 capsules- after 2 days - you guessed it - I started with a UTI and this time its not responding to Nitrofurantoin. I think the theory of a lingering UTI is very possible. Two years ago I was admitted to hospital with R sided pain typical of appendicitis - but it wasn’t and was diagnosed with a UTI! I’d had one the previous week - had taken antis and thought it had gone. I was given strong antis that meant 6 months without further infection. I’ll be telling the Urologist all of this - just hope he listens!

PS: I buy the capsules online from

Troo Healthcare - 90 capsules for £11.97 and 180 for an extra £5. No postage and earn points that can mount up quite quickly and are easily redeemed against your next purchase. I looked around and didn’t find any cheaper.

[ClarkB in reply to MamaBeagle]

Yes they did. I took them a couple of years or so before going on steroids, and so don’t know if they make a difference. I haven’t had any urinary or bladder problems since. I suppose all symptoms and conditions vary, and some I haven’t heard of! (I read other people’s reviews on Amazon, and one woman writes about being hospitalised with pyelonephritis brought on by an untreatedUTI. She suffered several recurring UTI’s - 2 a month. She had side effects from antibiotics, and since taking these alongside vit C, hasn’t suffered another UTI or symptoms. Says she can’t believe it as these tablets have solved all her issues. Calls it a miracle supplement. Worth taking a look anyway. I noticed 168, mainly positive reviews on Amazon.)

My own problem didn’t require a stay in hospital. I was thought to have kidney stones too and saw a consultant but can’t compare with other more serious issues . Previous conditions have faded into the background somewhat for me, since being diagnosed with PMR, osteoporosis, diverticulitis, and eye problem! I have to concentrate on the latest ailment!

Anyway, just a thought!

[Valnvaughan in reply to MamaBeagle]

Waterfall D-Mannose tablets work for me to combat UTIs. After several repeated infections that appeared to clear with antibiotics but returned, I tried Mannose on a friend’s recommendations about 4 years ago. I now take it at the first twinge and it works for me. Or you can take a preventative dose.

It is also worth making sure that the area is well moisturised, as dry vagina ( vaginal atrophy, my GP diagnosed) which can be a problem for mature women is a contributory factor to UTIs.

The Mannose can be safely taken alongside Pred for PMR or GCA.

Hope this helps. Valerie

[MamaBeagle in reply to Valnvaughan]

Thanks VV, at the moment the antibiotics seem to be doing their thing. I don't normally suffer from uti's, the only other one was about 40 years ago! But I have a dread of it taking hold and becoming chronic. Both my sister and mother have suffered. My mother I sorted with lwater, water and more watered. My sister discovered it was shower gel. She went back to the soap we'd used since childhood...and bingo! Result! I have ordered some of the tabs though..... insurance!

[EdithWales in reply to Hidden]

Mist pot cit? I used to use that 60 years ago on my gynae ward. Wait long enough and everything comes back! 🥂🥂

[Hidden in reply to EdithWales]

Everything that goes around, comes around! 😉

[Marilyn1959 in reply to Telian]

Ditto! If you crack the code and find a solution to recurrent UTI or blood in urine with apparently no infection please do get in touch.

[Telian in reply to Marilyn1959]

I’ll shout it from the rooftops Marilyn!

[MamaBeagle in reply to Telian]

Telian, I've had several suggestions about alternative treatments, I hope you've seen them all, esp Pro's link to the article we both remembered. I so hope you are able to get 'sorted". MamaB

[Blearyeyed in reply to MamaBeagle]

Oh Mama,

You really are going through the mill just now.

I hope those lovely pups of yours are giving you enough snuffles to help you through it.

I don't need to tell you , but I will, rest and take care of yourself as much as you can , and please tell us your news or come and have a well needed rant when you need to, you will always find a shoulder to cry on or an ear to rant in. If you ever want to PM for a chat I am always here for you too.

Take care , hugs , Beex

[MamaBeagle in reply to Blearyeyed]

Dear Bee, thank you. I am so trying to take care of myself. As for snuffles.....OH gave me them He was briefed to take care of me but went down with a chest infection

This involved lots of spluttering, coughing and general groaning. Of course he generously transferred his bugs to me. So I have now been coughing constantly. I ache all over, got sore ribs and two beagles who are making do with extremely shortened walks!

[Blearyeyed in reply to MamaBeagle]

The fact that they are getting walks at all is a sign of your unbelievable strength levels despite all that you are suffering from.

My OH and children are told to walk around shouting ' Unclean' and pretending to ring a bell when they feel a bug coming on so that I don't get too close. It sounds very precious ( and very silly!) but with our reduced immune systems on the drugs and with the disease it is so important to keep the bugs at bay and seems to work.

The steroids also unfortunately reduce the speed of the healing process , as they can reduce our ability to produce collagen quickly , which can also cause the UTIs , even without the additional operation, as anything using connective tissues for strength like tubes , muscles and veins can become more lax.

I feel for you , you have so much going on you must be at the point were you feel PMR is nothing to all this!!

Unfortunately , it's a long road of rest , fluids , vitamins , minerals and trying to keep calm, but with your stamina I know those dogs won't be sitting around too long.

All my love , Bee xx

[MamaBeagle in reply to Blearyeyed]

Ah thanks Bee. I must admit for once though that I am a bit exhausted. I can't take my usual supplements on these antibiotics but I only got 3 days supply so if they doo their job I'll be back on my vitamins on Tuesday? XX from a very unclear MamaB

[Blearyeyed in reply to MamaBeagle]

I hope the antibiotics work , but if you feel the symptoms come back , get to the GP , or if you can't get a quick appointment , go to Out of Hours as soon as you can , the quicker you get on the next lot of antibiotics the better with a UTI , if it's left to increase again it takes alot longer to get rid off.

Keep that vitamin C , iron , magnesium, zinc coming , and garlic , ginger and good honey are all antibacterial and antiseptic and do help in the healing process , don't know if you are still allowed orange or cranberry juice but that with added turmeric , fresh ginger and honey as a hot or cold drink is good all round , to help that nasty but the OH gave you too.

Keep warm , hugs Bee x

[MamaBeagle in reply to Blearyeyed]

Thanks again Bee xx

[Telian in reply to MamaBeagle]

Oh Mama, what a situation you’re in- and your poor Son and DIL. Wishing you all comfort at this very sad time. X

[MamaBeagle in reply to Telian]

Thanks Telian, it will pass and then the healing will begin.

[markbenjamin57]

Hear Hear Rimmy. 'Live and let live..?

[Theziggy]

I think that one of the most valid things that this forum does is 'make us realise that we are not alone with PMR' and thus we post and like the style of some people and become virtual friends with them.

Some people post a lot and some not at all, that's fine - needs must.

Maybe some posts are off subject but ................. sometimes we want to share real life things with people who understand, and who understands us most than the flora of this forum?

When I was diagnosed with PMR, I had never heard of it before, and it was only down to this great forum that I learned that I was not alone - which was such a great help for me - finding a virtual family who hurt as much as I did! Eased the pain a bit.

I am in the process of being re-diagnosed with palindromic rheumatism and there are no forums, little info about this AI condition. Think yourselves lucky

And also thanks for all you have done for me - we are good at complaining - let's start thanking people too.

[Blearyeyed in reply to Theziggy]

Well said , and sorry about the lack of information and groups for your newly diagnosed illness.

You still have friends here though , and although not always PMR , many off your pain and other related symptoms have similarities to those of PMR , and many of us have a number of autoimmune and autoinflammatory conditions going on at once , so please still drop in and ask questions on any of your symptoms and forum friends may still have some general advice or actual experience of them so that they can give you tips to help with the pain.

Take care , hugs , Bee x

[markbenjamin57 in reply to Theziggy]

Hear hear, Theziggy

[Bronni]

Absolutely! While I empathize with the manpower issue, censorship is a tough pill to swallow. I mean did anybody ever say anything really horrible? Such a shame

[Blearyeyed]

Well written piece , and such a positive way to share your sentiments on what has become a very heated debate .

Take care and I am hopeful that things will become a better balance for us all , with all our different needs very soon.

Hugs , Bee xx

[HeronNS]

If you read Kate's post, was it yesterday or the day before, about how to make life miserable for an administrator you will see that one of the main things is the admins having to do what the people who run HU have instructed. This effort to get our forum more focused again isn't a whim and I for one welcome it. Although I do recognize that we all need something other than cold clinical stuff. I have also appreciated the support I get here. But I think all of us need to step back and say, does this post actually relate to my illness? If, just for an example, visiting a grandchild made you very happy and your symptoms decreased, or exhausted you and made you feel worse, then that's fair enough - a valid reason to post!

[markbenjamin57 in reply to HeronNS]

Well said Heron, I agree..

[Grants148]

Thank you Rimmy for your excellent post,it really does sum up how l and many others who loved this forum are feeling .l always enjoyed your previous posts,l do hope that you will still keep in touch with us often,l know how you feel though as l myself am feeling that l should step back a bit now.lt has been suggested that there has been a kind of clique on this site,that is so untrue because newbies are always welcomed.l found this forum really helped me to cope with all the side effects of pred,and PMR,particularly being able to share all the emotions and setbacks we experience on our PMR/GCA journey.l am sorry that you are going through a flare at this time,l hope that you will feel better soon.l really miss Pepperdoggie’s posts,and Andrew has not posted lately.l am pleased to see Daisychains post,l hope she is recovering from feeling so ill recently,she always empathised so kindly with those who were struggling with their illness.l loved the humour too,it really lightened things up . Uncle Mark ‘s ramblings are not just humourous they are full of good advice,he really understands how we are affected by our illness.The picture you posted is lovely, such beautiful flowers,l have been longing for spring and the lighter evenings ,it’s good to be able to start working on the garden again,have to pace myself though ! All the best Rimmy,take care and l hope you recover soon from your flare,much love ,Patricia xx.

[PMRpro Ambassador in reply to Grants148]

Andrew posted recently (possibly on another forum, I can't remember) that he was going on holiday so wouldn't be posting for a while.

[Angiejnz]

Don't you just love the reaction to the post, as a group we have sent support for a dreadful palliative care situation, sorted teeth, uti's and mentioned Bond movies (sort of MB). That's being part of a village. Still waiting for the cure for pmr but waiting is made more bearable with fellow villagers.

[MamaBeagle in reply to Angiejnz]

So true Angie, it's what I love about this site. PMR is such a life consuming condition and affects all of us in so many different and unforseen ways xx

[bunnymom]

Lovely picture. It's snowing here so I could use some Spring. 💐

[Noosat]

I look for information, and just skip the other posts, if they go to far afield for me.

[Daisychain12]

Lovely Rimmy. Bringing joy to us all and unity. Xxxx

[dancersize]

Well said Rimmy.