Those that can't do... RANT!
Warning: The attached blog post contains some strong language and the subject matter may be considered (by some) to be socially unacceptable and inappropriate. Also, please note, the post is NOT related to directly to PMR/GCA, but is related to Small Fibre neuropathy with autonomic involvement.
Oh, Melissa, you have written a load of crap💩 but with a big dollop of humour.
Seriously though, how awful for you, especially when not a home. You were lucky to have found such a toilette, couldn’t see you managing in a pissoir!!!!!
Such a long time to wait for an appointment, at least you are at home now with your own accoutrements.
Thank heaven(or hell) for your ability to squeeze humour from the most dire situations.
Hoping the consultant gets to the bottom of it - 😐 I leave the puns to you.
Monica xx
Ohhhhh Marymon, That was a lucky day... the absolute WORST day was having to use the female pissoir (aka "the hole in the ground!!!!") on Market day in Saint-Rémy-de-Provence!!! 😬 ...and the poor lady waiting to go in after me!!!!!!!! 😳
BTW, I see what you did there... "written a load of carp!" 🤣 ...and "squeeze" humour from the most dire situations... and hoping Consultant "gets to the bottom," of it!!!!
You are hysterical!!!!
It has happened to me in the past - and was due to the change in water. So hopefully it will settle down now you are home.
Remember for now that WebMD covers all eventualities - but I hear you. My friends on LupusUK deal with this stuff on a permanent basis - if it gets that far they will welcome you to chat because they are a lovely lot and VERY well informed.
Fabulous... that's great to know PMRpro... Hopefully it is just a fluke, but we've been home since Saturday and the trend continues! 😬 Also, it's weird that I have this dry eye condition and my salivary glands are "slow!" ...time will tell and we shall see! Thank you.. your words have given me hope!
Just sending Hugs
...and a few giggles, I hope!
Most defiantly
My whole life is a laugh at present
I'm still trying to work out where the glob of soft chewing gum came from it was found by door of spare bedroom yesterday Moring .
Never use it so no idea
Missing yogurt from fridge disappeared yesterday evening my son hates them
What on earth is going on
Or have I lost the plot ?
Too weird!!!!! Poltergeist? ...just go with it, I guess!
...and by the way, we've ALL lost the plot! It comes with the PMR/GCA territory. : )
To be honest I lost the plot many years ago
Preds do strange things
I found since starting them I swear a lot plus I love annoying people
I have just said to my son as he told me he's had enough of me today that I had enough of myself today too
How bads that .
Ohhhhh, bummer. Yes I get to the point where I don't even like to be with me!!!! Yup how bad is that? 😤
That’s horrible for you.
Let’s hope it’s just a temporary French shitting problem. Looking on the worst side, should you need to do something about it, I had a sacral nerve stimulator op for a similar problem due to an over enthusiastic episiotomy in childbirth. Croydon University Hospital is a centre of excellence for the op.
Oh Mamici, there is no end.... your humour in the PMR wars is so helpful and admirable. Perhaps the only consolation is perhaps "this too shall pass"
🤣🤣🤣🤣🤣 I see what YOU did there.... a little BM humour! Hilarious!
Anything for a laugh! Seriously, I hope you are feeling better, try low fibre, white bread, etc. for a few days and try the xylitol gum, xylimelts, and flouride toothpaste for dry mouth as cavities can increase suddenly. Just another treat when you think all is well with PMR. Carry on my friend.
Carry on, I shall. Thank you!
“My pain may be the reason for somebody's laugh.
But my laugh must never be the reason for somebody's pain.”
~ Charlie Chaplin
Careful too much xylitol has a laxatlve effect! My son once ate a whole packet of sugar free sweets..... he won't do it again!
Sorry your'e having more problems, take care.
O mamicii I’m falling in leerv...with your humour😂😂 wot a woman your an inspiration. Truly . Fell better soon x
Awe... cool! ☺️ Thanks Monkeymate!
I'm hoping that said, falling in "love," and it's not some obscure Angelo word that means something like "totally offended by!" 😮
Nope 😁lol you just crack me up ,it’s so true ,smile an the whole world smiles wth you , you stay safe .
Coo! AND, as my Mom used to say (and it soooo fits here!) "....better out, than in!" 🤣 You stay safe and well too....
😂 What a wonderful rant, you always make me laugh. I started with my IBS the first day of a weeks holiday in Spain I can so relate to your problems in France. I only had to appear in the doorway of the pharmacy for the assistant to reach for the Imodium. Hope things get better for you shortly and everything is soon under control again. All good wishes and may there be a convenience on every corner with a full roll in every one.Lots of hugs and 💐
Awe... thank you! I wish you well!
....and CT-5012, I was quite happy to hear that someone else had similar issues!!!! I did feel that this could ONLY happen to me, but YOU and PMRpro, sorry but it's true... misery does LOVE company! Thanks for sharing! ; )
Rushing to find a toilet with crossed legs is never good. Merde indeed. 💩😫
Sorry that’s me with the crossed legs not the toilet!
Well, sh*te, Melanie. That's not good bricks.
Whatever it turns out to be, if there's anyone who can find a way to deal with it in wit and in grace, it's gonna be you.
I think of you often.
Thank you GG! *laughing* Yes, sh*t indeed... or as someone else said, "merde!" ; )
I'm not sure how "graceful," I will be able to remain, should this become a permanent, irreversible "thing," but we shall see! xxx
Wow! Melissa thank you for pushing the boundaries of what we feel able to share here. Every time you do I cheer. I have many of the symptoms you mention and have kind of decided that this disease has impacted on every bodily system I have and if the disease hasn’t the drugs have. Of course I am waiting for the fairy of good health to wave her wand, sprinkle the fairy dust and everything goes back to normal - burning feet, iffy bowels, lazy, irritated bladder, dry eyes, raised blood pressure, high blood sugar, raised cholesterol, sweating, weight gain, mad mood swings. I expect that I am living in a dream world and I am ruined, but for now I am staying in my pink cotton wool and I will be completely better some day, over the rainbow. 🌈
I hope you had a wonderful holiday in spite of the micromanaging. 💜
NEVER 'ruined' SJ - or you wouldn't have written so many wonderful posts - from which so many of us have drawn your invaluable insights !!
Thank you and as I was listing my miseries , I forgot the deadly fatigue, except now at 2.30 am, when I am bizzarly awake. “Not wounded sire but dead”. High Society. Xx
Insomnia - oh no !! ... XX
That is so true Rimmy!
Yes I knew you'd agree Melissa if you lose sleep almost everything else seems to fall apart. I have taken the antihistamine doxylamine succinate - a quarter of a tab since starting on Pred to help with sleep - which it has - altho it is meant to be a short term thing. I don't think i could have slept otherwise and THAT would have been the worst thing for me - I morph into 'something else' (ugly/mad) without sleep. Now I am on a lower dose of Pred I am weaning myself off them altogether. Not that I necessarily recommend using chemical help to sleep if you can get it any other way - but like most drugs we are forced to take it's always a 'cost/benefit' analysis thing - and the benefits may outweigh any disadvantages. Thing is to figure out these balances and as you know it's a bit of a 'tightrope' and we often don't know what's going to happen until after it does ... (sigh). Anyway thinking of you - sending tons of 'positive vibes' - as lots of us here are .... XXXX
Ahhhh, SJ, I love your vision! "Pink" cotton wool, 🌈's and maybe 🦄's. A place where we drink wine, eat cheese, and never put on an ounce of weight! We're all HAPPY and HEALTHY! ...and worry no more about the ills that currently bind us! Ahhhhhh, what a lovely thought!
You describe my side effects / symptoms but missed depression. My GP prescribed sleeping tablets, amitryptiline, to rest my body in preparation for hip surgery in 13 days time. Valerie
Dear Melissa - it IS 'just one damn thing after another' for you and I can relate - like I'm sure a lot of us can - to what at least some of that stuff is like. I had IBS (pre PMR/GCA) for many years and would be sitting (par example) a in a Uni lecture and have to jump up and find a loo after excruciating tummy cramps - so sometimes my 'flights' must have looked very strange and I felt it was very embarrassing - although others probably didn't notice as much as I thought. Then menopause came and all that simmered down - all for no apparent reason - the causes were never 'found' and oddly since being on Pred I've been even better still. But now I am tapering to more moderate levels I can sense a returning sensitivity - ironically especially if I eat a high fibre meal. It is not too bad at present - and I am hoping will never return in a serious way again - but because of this 'history' I really can seriously 'relate' to how you must be feeling as can anyone with such issues caused by anything at all.
You do have a wee while to 'wait' and this won't help anxiety levels which themselves can add insult to injury so it must be very annoying and upsetting to have to sit this one out - no pun intended ! But your unique and wonderful talent for expression - like YOU 'soldiers on' unabated - so DO keep keeping your chin up - I remain firmly convinced you WILL come out of the worst of this one day - one way or another ... and then imagine all the stories you will tell - and the BOOK !!
Love Rimmy
XXXX
Ahhhh Rimmy! Thank you!!!! I see also what YOU did there... "sit this one out," 🤣 if that pun wasn't intended, no pun EVER has been! People are very good at this BM humour!!!!
Wow! I'm sorry that you experienced similar issues and when you were young and probably gave a s**t, about what people thought! ; ) It is maddening having to wait for answers... but I have no choice. It is what it is. Be well and be happy and I truly hope your "returning sensitivity" is temporary and becomes no more than a minor sensitivity! xxx
We have so many bizarre problems in common, Melissa.
Now add age 63 and what I always thought was IBS to the list. I’ve had that one for a few years longer than the other neuropathy symptoms, though. I go in for my “more comprehensive” electric torture exam this Thursday...can’t wait! Good luck on your results...hope they turn out better than feared.
Oh Ciar, we have another thing in common??? Weird huh? Good luck with your "electric torture" exam!!! I'm sure thinking about that isn't stressful at all!!!!! 😱 I have to wait a bit longer to see what my next steps are, but really looking forward to having some answers. Fingers crossed for you on Thursday!!!! 🤞🏼
Titillating tantrum today! PML as they say! X
Ooooooo, do tell!!!!
Your rant (read tantrum) was so titilating I peed myself laughing.... (No tantrums from me, I've just gone up to 10 steroids for a month after a particularly successful phone call with the Dr.) x
Ahhhhhh, got it! Thank you... best compliment ever!!!! Well done me! I made you PYL!!!! At least you didn't s**t yourself!!! So you've gone up 10mg, and you are happy about that? You must have been feeling like crap (no pun intended ) and wanted to increase the dosage... and you're happy because Doc agreed?
I like your puns! Must 'fess up to having had some squitty days myself!!! Always blame the steroids! I got to 7.5 and was hanging on but duty dr said go up to 8 - I did - it didn't work! It's the first time I got to 7.5 and it's as if you are two people inside your head "I'm not feeling great" "it must be the adrenals - it's what happens" "I'll wait a bit longer" and so on until eventually you just have to accept it's not your time! I'm learning all the time! Anyway I look forward to your next rant and I can LMAO. (I think that's what they out these days....not that it's one I usually use but for you... Well you're special! Xxx
Ahhhh, got it! I like that, "... until eventually you just have to accept it's not your time!" Yup, makes sense to me and has happened to me! Better luck on 10mg! And thank you, you're SPECIAL too!!!!! xxx
Thanks for entertaining us with your shitty issues. You have 2 options: 1. sink into a depression and never leave your home again or 2. stick your fingers up to all the trials and tribulations that are being thrown your way and keep positive always looking towards the light at the end of the tunnel. Susan x
You are most welcome Bamber99!!! My pleasure... well not exactly a "pleasure," mind you... more of an embarrassing, inconvenience, but hey, potatoes, potatoes, right? And you are right... I will take what is behind your Door Number 2, please. 🖕🏻
I will pray for God to help you. I don't recall reading in the Bible where God laughs at our pain.
Our plans I think. The very idea that we can order the universe. Giving us the strength to sometimes laugh at the trials and tribulations.
Thank you Sadie1024, for your prayers, I graciously accept them. However, I don't think the saying implies that God is laughing at our PAIN, just at our PLANS! It's actually an old Yiddish saying;
מאן טראַוך, גאָט לאַוך.
Mann traoch, Gott läuch.
Man plans, God laughs.
...and, although I know NOTHING about the bible, I did a little research and found that in Psalms 33:10 it does seem to imply that God will and can disrupt the plans of nations as well as individual people... "... The Lord frustrates the plans of the nations; He thwarts the devices of the peoples." I don't think it's implying that God does this to be cruel or sadistic, but to point out that there are divine plans in place for us and our own mortal plans are a bit silly and inconsequential, in comparison.
Man plans with God's approval. With God's help we can get through these trying times. Why we have to go through this, only God knows. I keep my trust in Him that He will help all of us get through this, and I have faith He will. God bless you and help you.
Ahhhhh, but man, being MAN... often "goes off the rails" and tries to plan and manipulate things the way he believes they should go, or the way he wants them go... and I believe that is when God laughs!!!!
God isn't without humour!
If he created us, and so many of us are blessed with the gift of laughter, humour, absurdity, irony, silliness, etc... we must have gotten it from him! We should embrace it!
One thing for sure... we will get through this and in the end, none of us are getting out alive.
PS - Please know, I am not mocking you, questioning your faith, or belittling your beliefs.
I know you are not questioning my faith and neither am I yours. Yes I am sure God does laugh when we try to do certain things on our own judgement. God bless you
Oh mamic, I don't know what to say. ((((( ))))).
Get yourself some pads when you go out, no one will know.
😱
No probs I used them many years ago when I had bowel probs.
I hear you.... and you are right of course, but it is my worst nightmare! 😳
I know, I was only in my 40's then and felt embarrassed but I soon got over it.
I guess we really have no choice but to get over it! ...and ourselves! : )
That's easier said than done. It is too much for one to cope with, you have enough health issues going on already.
I felt so happy for you when you got down to 25mgs of pred and now this. Talk about a knock back!
Away at the moment Portugal, had a little moan about the changes from first visits 25 yrs ago eg boardwalk lots more tourists ect but on said boardwalk lots more facilities, that’s a big plus for me now . Bright side . One thing I can’t understand at home going down the path to the back door feeling fine ,by the time key is in the lock ,desperate .
Thinking of you and sending hugs. You don't deserve all this.
You just took me back 35 years to when I was in St Remy de Provence. Oh to be half my present age again!
I hope you feel a bit calmer knowing your own loo is only a few feet away.
Heheheheheheh, I do indeed! Although, I miss the beauty and wonder that is Southern France... It was almost worth all the "excitement!" Nah, maybe not! St Remy is one of my favourite towns... I can easily see myself living there!
Dear Melissa, I know the issue from the very beginning of pred/pmr.on.
So I travel by train (toilets) and prefer to walk in the woods, always a tree to hide behind. It is this or staying around the house. Sometimes , in case of emergency I have to do with odd places. I am not getting used to it, but it is better than the alternative. And I am Dutch and therefore a bit less civilized then the majority of British inhabitants?
Ahhhh, all good tips! Trains and trees! Thank you! Yes, small French Market towns (on market day) was NOT the ideal! I'm American (but live in the UK) and I was perhaps already a little less "civilised" than my British comrades... but I agree, going wherever you can go is WAY BETTER than the alternative!!!
I love your philosophy of walking in the woods - in case - we could get a bush walking 'club' together - I can just imagine us all dodging in and out of the bushes ha ha !!!
Thank you Rimmy, for the laugh, I had a small peeing club with my sister.
What a bummer - pun definitely intended. Just a thought - how's your thyroid?
HA! 🤣 Good one! You guys are really good at this BM humour !!!!! They keep checking my Thyroid for various things and it is always fine...
Yeah but fine for them may not be fine for you..............PMRpro will know better than me it's not just the TSH but it's how T3 and T4 get the stuff into your cells and they don't always test for that.......... I'm only saying this cos a friend of mine was feeling shitty and got the answer al OK with the thyroid and etc so she went to a doc when she went to see her mother in the States - got the whole load of tests including oestroen and progesterone etc etc a came out with a whole lot of stuff...........and she is getting better - just saying...........if the GCA and PMR are attacking our systems then the endocrine system can't be immune to the all out war but somehow it doesn't seem to figure in one of our worthy GP's boxes or flow charts............of course - I'm just saying!
Makes sense... and I'm sure each time they do a test, they are doing only the "basic," cheapest Thyroid test... I'll do some research and mention it to the Rheumy, in October. I also know the Neurologist just did like a gazillion blood tests... I'm still trying to get copies of the results. Cheers !!!
Pred suppresses TSH - so you may have an apparently normal TSH but really it should be higher indicating a lack of thyroid hormones...
I knew you'd have the answer!!! Thank you PMRpro.
So enjoyed that. And OMG you’re taking the piss lol. I have a GP and the continence specialist trying to work out why I’m peeing so much with no warning and my pelvic muscles are gubbed. Not to mention the bowel issues, the night sweats yada yada. All sounding familiar. That’s something to bring up with Rhuemi on Friday.
Another great blog!!
Hmmmmmm? Sounds like the same symptoms!!! Do you have numb, tingling feet????
Thank you!! I'm glad you enjoyed it! ...and love the LOL!!!! Keep em laughing, that's what I say! : )
I just had to reply to your post is was as if I had written it about myself! I'm 5 years into GCA in October and during that time I have had most of the symptoms you describe. I've been referred to numerous consultants, endocrinologist, cardiac, rheumy, counselling, the latest being a coloreactal surgeon. Had no end of scans, bloods etc. The list goes on and all because of the strange and painful symptoms that, like you, I had when on a high dose of pred.
Looking back I now realise that most of the symptoms I had were related to the dreaded prednisolone and it's side effects since I don't have any now and didn't need any treatment. I just get a niggle now and then, which I relate to pred withdrawal, I'm taking 2mg right now. During the 5 years I haven't come across one medic who would relate my symptoms to pred.
Then of course there's the whirlpool of misinformation, no one fully understanding the condition, searching google for answers that sometimes just don't come or frighten the life out of you and of course the inability to reason things out because of a muddled mind. It got that bad that I was in a very dark place at one time and could see no way out. Thank goodness I came across this site after I was 2 years into GCA.
I have medical insurance and have experienced that GPs are only too happy to refer me when sometimes it wasn't necessary and a little time and understanding would have sufficed.
I do hope that this post helps you.
Wow! You’ve been on a hellava journey, huh? It is a rollercoaster, with hideous twists and turns! And just when you think the ride is over, it speeds up again and into a a cold, dark, uphill tunnel you go!
I am sorry to read what you are going through. Some of your symptoms I can relate to. Are you taking Omeprazole or Ranitidine by any chance? I was told to take 1x20mg Omeprazole daily to "protect my stomach" from steroids. I took it for 3 months before I realised it was the culprit causing horrendous side effects - dizziness, sore stomach, trembling, night sweats, bowel incontinence (with little or no warning), dreadful flatulence all day long (smelled like a bomb had hit a nearby chemical factory). I came off Omeprazole and tried Ranitidine but it was the same. It took several months for things to settle down after coming off Omeprazole completely. When I went to my GP about the symptoms she told me to double my dose of Omeprazole! But, my gut feeling told me to stop it completely which I did cold turkey. By the way, I have GCA diagnosed in March 2016. I hope things improve for you soon.
Hi, thank you! Nope, I stopped taking Omeprazole 5-6 months back... I eat natural Greek Yogurt for breakfast, before taking A good Pro-biotic later in the day. So far tummy has been great! ...except thus most recent issue!
Tinnitus and dizziness
Out With the Old…
Eat beans and scratch your back
