Whatever next?!

Me again, Sorry for the moan. Everything seems to be getting on top of me. Earlier in the year we were told that my husbands prostate cancer is getting worse and in May we were told that my son has terminal liver cancer. It took them from December to get on with the diagnosis . I haven`t been able to share this with you all before Because putting it in print makes it real. My granddaughter decided she wanted to get married while her Dad could still walk her down the aisle so I`ve had a wedding and all that it entails to organise for Sept 4th.

Thanks for listening, Shebob

Oh Shebob - mega big hugs, sorry they're just virtual ones! :hug:

I'm so sorry. If you didn't have PMR before I should think you would have it now! I also had awfully sore eyes with my PMR before it was diagnosed and we even thought I'd have to give up contact lenses altogether - my absolutely superb optician who's far more than \"just\" an optician was totally conflummoxed!

The rash/itching etc I can also empathise with - also before diagnosis. I found mine could be avoided by avoiding anything with wheat in (easier said than done). On reflection, it started about the same time as the other things that were finally diagnosed as being PMR and now I do occasionally eat things that \"look worth itching for\" and am OK. But that's sort of once in 3 months and I use loratadine (20mg per day) most of the time and ALWAYS when I might expect not to be able to avoid the wheat (eating out in GB, mainly, since they have no idea what is in their food) just in case.

Think back Shebob - does the problem parallel the increase in stress with all your poorly people and the wedding? Is there ANY chance it might be from the PMR flaring in response to the stress? And just chucking in a new symptom? In which case - MORE steroid might be the answer. Just a thought. Mine improved within days of taking 15mg pred.

Have you been given artificial tears for your eyes? And my optician recommended a spray for dry eyes - Clarymist - which was fabulous. You spray it on your closed eyes and it works over a long period, not like most artificial tears. Unfortunately you can't get it prescribed and it's about £13 for a little bottle. However, it keeps for ages unlike the tears stuff which lasts a month after starting the bottle/tube. They don't improve clarity of vision either (gooey) whereas the Clarymist has no effect. There are now other companies making similar stuff but I didn't like them (got funny stuff in them!)

Come back for more moans - now you've finally put it in writing and stopped the denial bit. If steroid brain wasn't enough - you'll have the \"big C cottonwool brain\" too! I remember it oh so well even after 16 years - I felt shut out of the world then, if only there had been a site like this but tinternet was just a baby for most of the world then.

Much love and keep your pecker up until the wedding - then you can shout and scream as much as you like,

EileenH

Thanks for you response Eileen H . No I can`t relate it to any particular time - the itching that is. But I had frequent bouts of it before PMR usually a few weeks after a COPD exacerbation when I`d been on antibiotics, but never lasting this long.It was diagnosed as Hashimotos Thyroiditis a few years ago but my doc said it would just right itself at that time. She`s reluctant to do a blood test this time.

My optician advised that I use Lacri-Lube at night and Clinitas Hydrate for during the day. I think they`re helping a bit. Probably a good cry would help but if I start I`ll never stop. Thanks again for yout thoughts, Shebob

My dear Shebob - wish we all lived near to you so that we could all give you a great big group hug.

That all over itch must be driving you mad. I sympathise as I get the odd itchy moments (having one as I write) and I've also got several small insect bites all over which is not helping although aloe vera gel has calmed them down now. It's possible that the blood is getting overheated and needs something to cool it down. I always drink loads more water when I start itching to try and flush any toxins out of my body. I also have warm water with squeezed lemon juice in first thing every morning as it's supposed to be a detox. Have you tried anti-histamine tablets which if you are able to take may help particularly if it is an allergy problem?

In spite of PMR and all your own problems you are also carrying the rest of the family's problems and putting up a good front for them so just you come back here and unburden yourself whenever you feel the need to get it off your chest.

Do hope all the wedding plans are coming together well and that your granddaughter and all of you enjoy a wonderful day next week.

Lots of love, hugs and kisses.

MrsO

Hello Shebob

I am so sorry you are having so many problems.

You mentioned that your doctor has given you Canesten cream for your itch under the bust. As I have said before I find the Canestan talc powder very good for that, it keep you dry and keeps the itch away once the cream has got rid of the itch. Your can buy it in the chemist in very small puffer at about £2.50. I would be lost without it. All you need is a little on a finger each morning dusted on.

My husband had Prostate cancer about 13 years ago and they froze his,he was a guenea pig for something they were trying out. And now he has an injection every couple of months of hormones. Five years ago he had a triple heart by pass. Now he is very well and is helping me.

Has anyone else suffered with pains around the rib cage with this PMR? that's what I am getting now. It seems to be moving around.

I am on 8 mg Preds. at present been down and up and coming down again.

I do wish you all well soon or at least improved, as that would help us all.

Spammy

Hello Shebob

I am just so sorry to hear all your problems it is no wonder you are having pains in your head !! Perhaps as suggested before you should be increasing your steroids as your stress levels must be through the roof As I havent had any side effects from steroids it is a bit difficult to comment

The itching I have been one of these people who has only to touch things and I will get a rash I used to itch like mad if I ate tomatos here but fine abroad where they were sun ripenend and didnt have chemicals on Many years ago I changed to unperfumed products Boots deoderent plain soaps Simple shower wash and I never wear perfume and buy unperfumed hair products The other thing we did over 25 years ago was buy a water softener and since always useing softenned water I am fine I always use a body lotion when I come out of the shower As as soon as I have dry skin I itch On holiday I use an expensive one ( Elizabeth Arden 8 hour body lotion a tube £23 doesent last much more than a week !!) But I normally stock up on the internet cheaper and this keeps me going when I am away and the water might be hard Have you tried the products for bathing etc the give to people with exema ?

Mosquitos love me so I spray like mad all summer and if I get bitten it is strong antihistamine I get on prescription Perhaps they would help with your itching Itchy skin is so debilitating on its own without anything else

I tried the spray on the lids for dry eyes when I had a problem a while back and it did help I have worn contact lenses for 41 years including doing trials for the long term wear ones and have luckily only once or twice had a problem

I am so sorry I cant be of any real help to you and do come on here and tell us as often as you like how you are feeling as I can imagine with having so many problems in your family you have to keep it together for them

Very best wishes

Mrs G

Hi Spammy

During the early stages of PMR and steroids I, too, had discomfort around the rib cage area but it was fairly short-lived in comparison to all the other symptoms/side effects - it just appears to be so easy to sprain different muscles around the body during this PMR journe probably because although the steroids are prescribed to reduce the inflammation in the muscles they can also adversely affect those muscles (weaken/shrink).

That's a good tip about the Canestan powder, Spammy. I find that those little cotton make-up remover pads slipped inside the bottom of the bra absorb the perspiration and alleviate the problem. I also stick to cotton bras and find that the underwired bras seem to cause less of a problem. Mind you I've spent a fortune on bras over the years as some of them cause itchy wheels from either the elastic or from the metal rings so my skin is obviously highly sensitive. Goodness knows what materials or metals they use these days because I never used to have an allergy - I even have to paint the metal back of the button on the inside of my jeans otherwise I end up with a big itchy blotch!

That's good to hear how well your hubby is after all he has been through and let's hope that you soon make a complete recovery so that you can both put all the problems behind you. Very best wishes.

MrsO

Hi Mrs O, Spammy and mrs G, Thanks so much for your support. I have always been a \"touchy \" person- anything metal (other than gold or silver ) next to my skin would cause problems since I was a child. I never use perfume or perfumed products. I use a baby wash in the bath and for washing- have done for years, so you can see why I`m mystified.

I was reading my diary this morning and I had a blood test on July 9th with the practice nurse. Usually have no problem but she tried first one arm then the other and the pain radiating up my arms was horrendous and couldn`t get any blood. They had to sit me down with a cup of tea and then another nurse had a try with no success and eventually took it from my hand. Don`t know if it means anything but on the day after I`ve put in my diary that I`m pricking everywhere and feel poisoned. I also drink loads of water every day. Short of shaving my head and joining a nudist colony I don`t know what else to do! Mind you they`d all run a mile at the sight of my \"steroid stomach\" Shebob

To Spammy - I, too, often have rib cage pain, usually first thing in the morning. My rheumy took note of it but did not comment. Seems a bit weird to me - but with PMR, everything sems a bit weird!

To Shebob - As so many have said in here, I would love to be able to give you a big hug. You have a lot on your plate these days, and I hope the wedding is a lovely day of distractions from all the illnesses.

To everyone - May we have more good days than bad ones! Peace!

Hi Shebob

During my months of being bedbound with undiagnosed PMR a nurse used to come to the house to do some of the blood tests and because I'd previously had difficulty with parting with my blood at the hospital on one occasion, she always used a fine needle. That worked a treat. I have a friend who always had a problem and she has been told to drink plenty of water before the blood test which apparently helps. Haven't had any experience of a nudist colony though, so afraid I can't help you there!!!

Love, MrsO

To Spammy

Yes I have had ribcage pain with this bout of PMR You mentioning it made me realise it has gone away for now !! I did wonder if it was just another muscle strain because I am very short I am always trying to reach for things ( I have lots of little fold up steps and reaching aids !!) It was around for several months but Im not sure when it went away

Best wishes to all

Mrs G

Shebob

Just dropped by as I needed a rest from weeding and read the thread.

I really only want to say one thing - do not ever apologise for moaning, ranting, crying or screaming with rage on this PMR part of this website.

We all need to let it out at some time - it takes some of the pressure and stress away - and that is most necessary with PMR. If we can't shout out each other - and expect understanding then the site and us are not doing what we can to help our fellow men.

I notice about a pain under the ribcage whenever I am worried or stressed out. I then make myself stop and work out exactly what the problem is - once dealt with - away goes the ribcage pain.

I do not have pmr so all I can put it down to - is its my minds way of making to take notice of it. But then who am I kidding me or myself?

I send the :peace: in place of the hug.

Hello Mrs O, Mrs. G Mrs K, Vierannce and Shebob, and any one I've missed.

Thank you all for your replies regarding my pains around my rib cage. I thought I might have pulled a muscle when lifting a pot in the garden but I have had it about three weeks now. So must put it down to the PMR as it seems to be a common thing.

I too cannot wear metals against my skin. Do you remember those awful metal supenders we had. and the clip on ear rings they all made my skin itch.

And the nurse can never get any blood from my arms either and have to use a thin needle. I did not know that that is another fault of the PMR.

Take care all

Spammy

Hi Shebob,

A big virtual hug from \"across the Pond\" too!! You really are having a rough time and I hope you are getting some opportunity to take time for yourself and to look forward to a lovely family day at the wedding. It seems to me, reading earlier postings, that many of us with PMR are used to being the carers rather than the \"cared for\" What we must all learn now is to relinquish that role and get ourselves better....easier said than done :wink: I cannot believe that I have had this for 5months now, and although able to function, it is not nearly \"normal\" for me....must learn patience aswell !!! very best wishes and good luck with the wedding planning, Pauline, Dublin

I am just going to say \"Hallo All\" ;so many of you have replied and there are so many related topics.

One exception, though. shebob .

[quote:fce3f5b19b]Everything seems to be getting on top of me.[/quote:fce3f5b19b]

I'm not surprised and do hope that you have a wonderful day on 4th.

Your post has made me determined to try and keep my relatively minor discomforts in perspective. I am very lucky with the bloods. The nurses greet my arms with delight as the vein is so easy to locate and readily gives up the required number of bottles. Even though I bruise easily there is nothing to see afterwards but a tiny hole. Not boasting; just reminding myself how lucky I am.

Re the rib-cage discomfort. I get it intermittantly and always on th R side. I have wondered whether it could be digestive reaction to some foods. I cannot touch pork products but was daft enough to partake in some home-made croquettes. Not good. Also I have been greedy with the runner beans and noticed the pain after indulging. Coffee, sadly I gave up ages ago but that had the same effect. But, any kind of anxiety will bring it on, too. That's half the trouble, isn't it. We can never be sure what is cause and what is effect; what is PMR and what is steroids, either too much/too little/ reducind dose. It almost makes you feel sorry for our doctors.

Wanted to reply to Eilen's piece re what a difference a tiny increas/reduction can make but will do so under proper heading.

Horribly hot here and wasps everywhere which terrify me as I react violently. Zirtek does the trick if I take immediately. There! Now I'm moaning again. Sorry. Tea-time. Goody. Good wishes to all BettyE