New here: Didn’t know you guys were here - I’ve been... - NRAS

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TikiGran
TikiGran
51 Replies

Didn’t know you guys were here - I’ve been taking various dosages of steroids for 8 years and we’re trying the methotrexate route to get me off the steroids (at the moment taking both - and only getting worse). Never knew the dangers - the written data that comes with the pills just says “It must not be taken everyday.” This stuff is stirring up all sorts of old stuff - migraines, fatigue, pain where I never was bothered before, old injuries that I’ve learned to live with or that have waned away. Glad I have a meeting soon with my specialist. It’s nice to know i’m Not alone with an extremely insensitive husband for whom I am the sole caregiver - he has COPD and requires constant maintenance. I am so tired and depressed - thanks for being here, I’m tough and I’ll make it now!

51 Replies
oldestnewest
Diddydriver

Hi, welcome to this wonderful site. Everyone is friendly and informative. Methotrexate ( MTX ) takes a little time for you to feel the benefit, I have been on it for 5 yrs. I too have a husband whom can't do anything to help me due to him having dementia, I have to care for him as well as coping with my pain and fatigue, yes it can be difficult but we women are made of strong stuff and seem to just get on with it. Do take care, get as much help as you can and take time out for yourself.

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sylvi
sylvi
in reply to Diddydriver

Darling your in a different league Tikigran due to the fact your hubby can't do much as his memory is going and darling i feel for you as i think there is nothing worse than someone with dementia. Oodles of hugs from me and know i really feel for you.xxxx

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Shalf
Shalf
in reply to sylvi

My mum has dementia Sylvi and she depends on me. I give everything I can to help and support. It's hard. She has some carers who come by but mum isn't liking that too much. Agree with you! Feel for everyone who has or is looking after someone with dementia.

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Beviej
Beviej
in reply to Diddydriver

I to am living with husband with dementia.No support! Finally started taking antidepressant and went for counciling.Changed my life.

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Gnarli
Gnarli
in reply to Beviej

I can't ' like' your post as you are struggling with so much. My heart goes out to you

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sylvi

I am not going to like your post,but first i will welcome you have found a great place with people who are sensitive to your needs and will support you between every rant,good news etc. We have all been there. You may be sole caregiver to a insensitve man(your words darling) you also have needs and you need to tell him darling. He is not so ill he can't do some things for himself. I know because my dad had it he still did a little bit to help mum. You want to sit him down and tell him if he doesn't change his attitude you will go on strike as you need a break too. Also see about getting some help in the house so you at least can get some rest. See about what benefits your entitled to as there is loads of support out there. Sorry if this upsets you darling i wasn't inteding to do that,but your husband needs to be aware that your ill as well my sweetheart. Hugs from me.xxxxx

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keeta

Hi lovely .and welcome.

So glad you.ve found us.

Even without having an insensitive family. People who are close to you seem to get used to you being ill..but because its something they can.t see .they get used to it.and you get comments like.ohh are you in pain.even tho they know every day your in pain. so they kinder forget how ill you are

.what the eye.s don.t see the heart don.t greave over.

But on this place we all no what you are going through. And we all have fed up days . We can say whats bothering us and there is allways some angel on here to help or at least talk through a problem.

You say you will make it now.

Yes lovely you will.with help from so many friends. Take care .gentle hugs xxkathyxx

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oldtimer

Have a look at the treatments pages on the NRAS site. It has lots of sensible information about the various treatments. It's a bit disturbing that you have been on just steroids for so long, with no other joint preserving treatment! I hope that you have relief with methotrexate and can tail off the steroids - but that may be difficult.

Best of luck with sorting it all out and please ask here if you have any questions - or just have a moan if you need to. We all understand that!

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BonnieT

I didn’t know until I worked at my church part time how many groups there are to help people. See if your church has a group that can visit, offer help cleaning, or other things. God bless you. Stay strong.

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Thingybob

My consultant explained that stetoids 'mask' any niggles or pains of any sort, whether from RA or not. While you take them you do not feel pains from other things, so when you try to reduce your dose aches and groans appear from nowhere which may or may not be due to RA and could be totally unrelated. That, combined with the 12 weeks it takes for MTX to work, means that it can take a while to get the balance of drugs right for you. I'm still at the balancing stage too and its tricky but hang in there

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Chongo
Chongo
in reply to Thingybob

G'day, Thingybob from the land downunder.

This is my first post.

I was diagnosed with R/A a month ago after nearly 8 years of hell pain and zero energy.

(My GP and all my specs originally thought the pain was due to my CX spine Spondylosis and Lumbar disc degeneration after many scans and weight bearing MRIs confirmed the damage, they said it was referring to different parts of my body through the nerves going haywire.........Until l suggested a test for R/A after doing a bit of backyard homework!

I scored 211 points! (The Don Bradman of R/A, heh heh)

I also have a long list of other work related injuries, Bilateral Ulnar Neuropathy, Bilateral torn rotator cuff tears, broken knuckles etc ----ex tyre fitter)

One question-Do you get the copper/penny taste in your mouth after the weekly dose of MTX?

I take a 10mg pill dose of MethoBlastin every Sunday (3 so far) also 2x5mg Folic tabs every day except MTX day and l have noticed the foul taste afterwards that will last 2 or 3 days.

I am still at the Prednisolone stage, but am slowly weaning down in the hope of the MTX taking hold and giving relief in 6-8 weeks or so, l have never felt better than l am at the moment for a long time, which has changed my life. (Preds)

Has the metallic taste affected you?

If so, does it go away in time and any thoughts on tackling it would be appreciated, mints don't seem to work, they actually bring on a burning sensation if l have one as my taste buds seem to be very sensitive, and all food tastes like crud.

Thoughts?

Thanks.

Chongo.

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Thingybob
Thingybob
in reply to Chongo

I did get atadte taste with MTX right at the start . But it wasnt for long . Try peppermint tea or ginger tea. I think the taste thing is due to steroids

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Chongo
Chongo
in reply to Thingybob

Thanks, mate.

I think you're right.

But, I've been on the Roids on/off for the last few years when the shoulders played up, also many cortio injections over a long period in both shoulders. Never had a taste problem before, so l suspect it's the MTX-Roid combination doing it.

Hopeful when done with the Roids, the taste will go away.

I will try the tea idea.

Manuia!

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AgedCrone

I do not mean to be rude,but If you have been on nothing but steroids

((?Pred) )for 8 years,I'd change your rheumatologist if I were you. I'm sure if you speak to your GP he would agree to refer you to somebody who will take more care of you.

I hope you manage to get help soon.

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Chongo
Chongo
in reply to AgedCrone

G'day, AgedCrone.

You are not being rude, no offense taken at all....l myself say things the way they are and expect same.

But it was my GP that had me on the Steroids (Pills and shots) for so long.

I'm pretty bashed about from a few other injuries and Osteo, so we thought that was the main problem.

l am pretty disappointed my GP didn't perform an R/A test a LOT earlier than only a month ago. (It was me who suggested it to my GP after a friend who has R/A said l show all the signs and harped at me for ages to get tested)

So, l take a lot of responsibility for my situation as l was reluctant to face the fact that l could possibly have R/A on top of the other issues, l was a fool and in denial.

A couple of mornings not long before the diagnosis, l had to walk on my heels with foam stubby holders taped under my toes as the flexing of my ankles was fairly intense (This happened when l was in the middle of outback W.A and my Targin 30/15, Endones and Meloxicams were lost in a grassfire that we had to fight which jumped us on whirly whirlys and a howling Southerly wind, the fire jumped behind us so fast we had no hope and it ended up burning our camp to nothing).....It was when l couldn't take those meds for a few days and they stopped masking the pain that l knew something was seriously wrong, it hit me like a brick so l bit the bullet and got tested as soon as l got back into town.

I just hope not too much damage has been done from the late diagnosis, again, my own stupidity and denial didn't help.

So thanks for your good wishes, l am so thankful l found this site with all of you great people who are here for us new members.

I probably will be asking a lot of questions in the coming months, so any advice will be taken on board and very much appreciated.

This thing ain't gonna beat me, that is for sure!

*Apologies for raving on a bit, but l am feeling so well now with a new found love of life due to the medication starting to ease the pain already, also the fact l have a diagnosis and a plan to tackle it has lifted my mood so much.......l just feel great!

Life is good.

Manuia!

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sylvi
sylvi
in reply to Chongo

WOW Chongo you live a hard life my darling. To have ra on top of all your other problems your one strong lady(i am asuming your a lady sorry if not) A true meaning of being a ra warrior. Hugs darling.xxxxx

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Chongo
Chongo
in reply to sylvi

Hi there sylvi, thank you very much for the kind hugs, it really matters meeting people with positive attitudes and kindness in their hearts such as yourself and all the other people on here who's posts l have read so far, you people are pretty damn awesome in my book.

I am actually a (fairly) young man from Australia with an incredible, very patient, understanding partner, Sharon, who is my rock, and her gorgeous daughter, Matilda from Sharon's first marriage. l consider Matilda my own and would give the world to see her happy and successful in life. She often tells me she wishes l was her real dad, and that just blows me away with pride.

I think you may have assumed me a woman from my Aussie style of writing while trying to explain experiencing (What l now know is called a "flare") which forced me to have to walk only on my heels.....What l meant to say was l literally had to walk barefoot, with only my heels touching the ground and foam under my toes as the flexing of my ankle joints in any forward direction was not much fun at all. That was the point when l knew l had to bite the bullet and get some tests going, my score was 211, which l am told is very high, so that explains the hell of the past few years l reckon.

So thanks again, sylvi, l am so glad l found you guys. I have a great feeling about you people and would be honored if l was accepted into your group of warriors, even if it's just to be able to vent occasionally or throw a few questions around as I'm only one month (Diagnosed) into this R/A caper. I suspect l have had it for some time now after looking back on the past few years and the days l have spent lying on the couch after sleepless nights wondering "What the hell is going on here"?

Life has swung another little punch at me, but who cares? There is always some poor bugger worse off than me, so l still consider myself fortunate every day.

"We are Invictus"!

Cheers.

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sylvi
sylvi
in reply to Chongo

Well darling man or woman your more than welcome to join our merry group. We don't vent all the time we do have some laughs along the way.Yu have only just started this journey of RA/RD or whatever you want to call it. We will all be here to help you alond and your right 211 is very high. Mine never went that high and i have little inflamation as a rule. My fingers are very slender so the swelling i have doesn't look bad according to the rheumy. So i look forward to hearing more about your partner and daughter. Hugs again from me.xxx

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Chongo
Chongo
in reply to sylvi

Laughs? Hoh hoh! This is going to be great!

I am going to show Sharon my new mates on here tomorrow and she is going to be stoked! She has watched me go from an easy going scallywag to a sombre pain in the arse (That word allowed?) over the last few years and stuck by me, but things are a changing back to the good ole days as we speak thanks to the meds I'm on and finding this site. (She might get a bit shirty when the old cheeky Chongo comes back out to play and run amuck, but she'll be right........She always used to say she had 2 kids to look after, one big idiot, and one small princess, hoh hoh)

So thanks very much for the welcome, sylvi, you and AC have lifted my mood and outlook greatly, and for that l am bloody (Word?) grateful.

Look after yourself, and I hope all is well with you.

The reinvigorated cheeky Chongo.

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sylvi
sylvi
in reply to Chongo

I can see we are going to have trouble with you Chongo,pmsl. I have a habit of having a weird sense of humour eg; i can say one thing knowing that it is as you call a double meaning and then watch the fallout from it so i can i am going to have a partner in crime with you on board. Welcome my friend.xxxx

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Chongo
Chongo
in reply to sylvi

OK OK, sylvi, l give you my word I'll er, um, ah behave...........hah hah. For the time being anyway until people get to know my own weird sense of humor and realize l mean no offense at all. But, sometimes l will not be able to control my cheeky side. So yes, we are gonna have some laughs. This is just the medicine l need at the moment and you and l are certainly going to have some fun here, you have a big dopey Aussie online Clyde to your Bonnie now, hoh hoh.

Faafetai for the response and the welcome, it means a lot to me and l really appreciate it....Chongo the (now) happy fella.

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sylvi
sylvi
in reply to Chongo

Wait until christmas come i willhave some real fun come then darling.xxx

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Chongo
Chongo
in reply to sylvi

That l can't wait for. Manuia!

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sylvi
sylvi
in reply to Chongo

Laughter always helps me with all i have wrong with me you need a laugh.xxx

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Chongo
Chongo
in reply to sylvi

G'day sylvi, l have just got back from the RSL after having a few beers with the lads for a couple of hours. I'm a bit boozy after a few sherberts earlier today on top of the RSL session tonight. A great mate of mine, Roscoe, who is 15 years older than me came around today to the shed just after lunchtime and helped me with the boat after he heard l was struggling to get it ready for the weekend. It is times like these when you find out who your true mates really are. We didn't achieve much though as he is one funny bastardo, so we just sat there laughing and drinking Haig Dimple Scotchethh in the sun.....Nice. Tomorrow l will get stuck in though if I'm not too crook and get my silly arse into bed soon. But honestly, l can't see that happening for a few hours yet because I'm feeling so good at the moment. l don't want to go to sleep and risk waking up feeling crappy. It's a raffle every night when l lay my head on the pillow not knowing what the next day will bring on. So bugger it, me staying up for a while longer and gonna ride this great feeling and have a couple more beers until l probably fall on top of poor Shaz.....Or the cat hah hah!

Anyway, sorry for rabbiting on, me a bit drinky at the moment.

Tofa.

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sylvi
sylvi
in reply to Chongo

I have a hospital apt. in a hour for my feet so i am of as well.gooday as you say over there.xx

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Chongo
Chongo
in reply to sylvi

Good luck, l hope all goes well for you. You now have the mighty Yawuru tribe from Broome, West Australia tapping for you, you will be fine.....It may sound ridiculous to outsiders of the culture, but it ain't, I assure you.

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sylvi
sylvi
in reply to Chongo

I am to have my other foot done now and it will be a bigger one to the left. xx

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Chongo
Chongo
in reply to sylvi

I am thinking of you, sylvi, and sending positive waves. Good luck, be strong!

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sylvi
sylvi
in reply to Chongo

Thanks Chongo.xxxx

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AgedCrone
AgedCrone
in reply to Chongo

Hi Chongo.......I'm glad you understood I only had your welfare at heart.

Thank goodness you are now on the right path to get you going on some meds that should give you relief from all the horrors you have gone though.

A lot of us here have had RA for a long, long time & we are still bouncing back ....so try to be positive & understand if pill one doesn't work for you,2,3 or 4 will.

You live in a lovely, but sometimes cruel part of the world......I have visited Oz quite often, & sometimes wish I'd moved to join family there years ago...but guess it's a bit late now!

Keep in touch & let us know how you get on with your Rheumatology Appoinments!

AC

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Chongo
Chongo
in reply to AgedCrone

I agree, AC, I live in the most wonderful, but sometimes dangerous part of the world and l love it. I used to live up the top of Western Australia and have seen some of the largest crocodiles imaginable (Among other beautiful, but dangerous critters). My favorite fishing/camping spot was called "The Cuttings" on the Fitroy river near Derby, it is 2 hours bush bashing through the scrub to get there and in my opinion the most beautiful, peaceful, spiritual place on this earth. I have many indigenous friends there and they are simply amazing, their spirit will never be broken and to see that massive white toothed grin from them every time we saw each other is making me want to go back up there so badly. My uncle lived there before he passed 5 years ago, I visited him once, fell in love with the place and that was that. He told me on that visit that once l had drank a single drop of the magical Kimberley water, l would be hooked on the place and never want to leave, and he was right! I miss him and the land there deeply.

The crocs at The Cuttings would ride in on the incoming tide and lay on the opposite bank looking at you, then you would look away for a few seconds, look back and you would only see the slide mark in the mud. You then knew they were in the water watching you. We had one rule we used religiously....NEVER go for your morning ablutions in the same spot more than once, the big buggers have a great memory and you never knew how clever they were or what they were thinking.

I am currently back in my home state of Victoria getting this new challenge sorted, but as soon as this is under control, l am going bush again. This R/A business ain't going to stop me and I am indeed going to stay positive and get back up there as soon as l can. It is my dreamland.

Again, l am so appreciative of finding you great people to have a talk to about what is new and a bit daunting to me. With support from my wonderful partner and her (MY) daughter as well as you folk, l know l can shove this thing to the back of my mind and get on with the job soon as possible.

I hope you are coping well at the moment also, my thoughts are with you. And when l tell my indigenous friends about you tomorrow when l talk to them, you will feel a power so strong, you will not believe. You have them on your side now also.

Chongo.

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AgedCrone
AgedCrone
in reply to Chongo

I must say I agree with you about all the amazing areas of Oz. My most amazing experience was being stuck up in the NT's in Darwin ..really, really hot, , no electricity so no AC for a week during a hurricane........a scary but unforgettable experience.

I've also spent time in Sydney, & Hurstbridge, just outside Melbourne where I have family. Lived down in NZ way back too.

Hope you are feeling a bit easier now...slowly it will come around.

Chin up Chongo...just listen to your Rheumy& it will all come good.

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Chongo
Chongo
in reply to AgedCrone

Oh hell !!

Sorry 'bout that AgedCrone, I thought you were responding to me, apologies to TikiGran also for butting in.

I am new here and don't know the system of Comms and responding yet.

Take care.

Chongo.

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AgedCrone
AgedCrone
in reply to Chongo

Don't apologise...it's not you......lately this site is having one of its regular "funny turns" & it seems to have lost the ability to reply to the right person.

Just write Hi ??? & the Recipient will work it out until the system sorts itself out!

But a little bit of advice ...just because you feel great today don't go at every thing like a mad bull.....tomorrow will not be kind to you!!

Until you are more long term feeling great....take it steady!

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sylvi
sylvi
in reply to AgedCrone

AIn't that a fact Agedcrone something i should do but don't half the time.xxxx

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AgedCrone
AgedCrone
in reply to sylvi

Sylvi take it from an old' gal.......you can always make time to look after your health.

Took me a while to learn...Yesterday I did absolutely nothing except read a book.

I had no aches & pains.....I just felt like it!

So feet up for a few hours every week Sylvi. Please? It honestly does pay benefits.

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sylvi
sylvi
in reply to AgedCrone

I had to go to town to put a sample in at the drs for hubby and i took the car as it was cold and windy. I had to get it out which was fairly easy,but getting it back was difficult,but i did it and boy was i hurting. Anyway came home put the car on the drive in some fashion and came indoors and that was at 10 am this morning and i have sat ever since. Hubby will get it out of the car and re-park it for me. I have been on here most of the time. Hubby is worried about me as i am very red in the face.xxxx

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AgedCrone
AgedCrone
in reply to sylvi

Well have a nice hot cup of something & rest this afternoon.

I'm just pulling out bedding plants ready to out in Spring bulbs, but it is chilly outside,so I have come in for a cup of hot soup & am gawping at Loose Women on TV....my God I must be desperate!

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sylvi
sylvi
in reply to AgedCrone

Ha ha ha ha when i read your last sentence i cracked up with laughter.xxxx

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AgedCrone
AgedCrone
in reply to sylvi

Well Sylvi who seriously watches that programme?

I'm not laughing now.........I just finished up in the garden & went to put my car away & the electric garage door shuddered & made a nasty grating noise.

It did close & thankfully the car is outside. But now to try to get the engineer out to fix it!

Why do these things always happen when it gets cold?

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Chongo
Chongo
in reply to AgedCrone

Thank you very much for that advice, AgedCrone.

Lately because of the high doses of Preds l have been feeling like superman again. I have achieved in the last 3 weeks a lot more than l have in the last 12 months......But yeah.....A couple of times I've gone a bit too far only to fall in a heap that night and for a day or two afterwards, it is bloody frustrating, to say the least! Yesterday l went a bit stupid working on my boat because feeling so good has given me my old interests back and l want to get back out on the water as soon as l can. l fell asleep in the chair at 9.30pm last night feeling exhausted and have just woken up at 1.40am in the morning in the chair as stiff as a board with these bloody cramps back in my hands...So some more Magnesium into me and time to hit the fart sack for the night now.........Any tips on cramp relief ?? Since being on the MTX, l have been getting massive cramps now and again mainly in the hands and lower legs. About a week ago, they woke me at 4 in the morning and it felt like my whole body was in a vice, the cramps in my lower legs was the worst and all l could do was sit at the table and shovel Magnesium down my throat while drinking litres and litres of water till the thing settled down enough to go back to bed, but then l was up and down all the rest of the sleep attempt going to the toilet every half an hour so the next day l was knackered and just slept the day away, Goddamm it !! It was an experience l don't want to feel again, that's for sure. I had to crawl to the table because any weight on my legs gave me the sensation of the shinbones about to snap and the pain was like nothing l have ever felt before. So any tips on tackling that issue would be a great help. Usually when l get a cramp l can move around a bit and it relieves it till the next wave hits, but not this time, l just had to sit there taking it until they settled down. I'm not a great fan of that, hyuk.

I am the kind of person who lives like there is no tomorrow and because in the last few years l have turned into a couch potato and missed so much living l am chomping at the bit to make up for lost time. But l am certainly going to listen to your warning and take it a bit easier till we can assess this treatment plan and how effective it is. If this plan doesn't work out, then too bad, we will try another.

Your last line of "Until you are long term feeling great....take it steady" is reassuring, it tells me there is a treatment that will work down the track, so l look forward to that and l am going to remember that line on my cruddy days as a pick me up.

So thanks very much, AgedCrone, yet again.

Chongo.

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AgedCrone
AgedCrone
in reply to Chongo

Hi Chongo......BANANAS........try them for cramp. I used to play a lot of tennis, & the coaches always said that the Potassium in Bananas helped.

If you watch any of the professional tennis players nearly all of them sit there eating bananas don't they? So maybe it will work for you too!

And no you don't need to play tennis first.....just try eating one chopped up on your cereal every morning & see if it helps.

Right now I'm sure you think you will never feel better...you will...but as I said you must force yourself to take things a bit easier until you find the right Magic meds for you... You can take some exercise of course but don't go mad man !

If the bananas don't help ask your doc what he advises. I've never suffered cramp too much....just in my feet sometimes, so don't really know any old wive's tricks!

At least you are just heading into Summer...so sit on your boat & watch world float by...l.but not too many tinnys!

Happy banana chomping!

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Chongo
Chongo
in reply to AgedCrone

Bananas! I used to munch on them when l played Aussie rules football and they worked great for cramps, so bananas it is "hoo hoo hoo". And thank Christ l don't have to play tennis, that would result in me hitting the ground huffing and puffing like a big brown oversize pair of bellows, hyuk.

Also I am taking Sharon to Lakes Entrance on the weekend (One reason l have been killing myself getting the boat ready) for a fishing trip. I never thought she was interested in coming with me out into the blue, but the other night we were talking and she said she'd like to come out some day very soon. She also mentioned she hasn't been to my mothers place on the coast at Lakes Entrance for so long (she was dropping hints)..... So this weekend, l have organized a bit of a surprise for her. Matilda has helped and as soon as Sharon finishes work on Friday, we are bundling her into my ute with boat in tow and l am driving her to my mothers house for the weekend. I will drive the 3 hours there and she can enjoy a bottle of plonk on the trip or even a sleep, her choice. But once we get there, l am going to forget your comment on the tinny subject, hah hah! Life is becoming good again....Holy hell! It's now 5.40am, l am off to bed.

Manuia!----Samoan for "To good health" or "Cheers" etc.

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keeta
keeta
in reply to AgedCrone

Well never too old to learn .but i didn.t no that.

Bananas for me.my cramps are awfull at moment .thanks lovely.xxkathyxx

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AgedCrone
AgedCrone
in reply to keeta

Really hope they work !

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Chongo
Chongo
in reply to AgedCrone

G'day, AC, Just a quick note to say thank you for the banana suggestion. I have been munching on 2-3 a day since your suggestion, plus a glass of water every morning and night with half a teaspoon of baking soda.......A LOT LESS CRAMPS, YIPEEEEE !!

(But I'm starting to feel the urge to climb the tree in the front yard and look for nits in Sharon's hair, which she ain't too keen about, hyuk :0)

So thanks again--- Chongo.

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sylvi
sylvi
in reply to Chongo

Put a bar of soap in your bed under your sheet at the bottom of your bed. You will be surprised the benefits of it.xx

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AgedCrone
AgedCrone
in reply to sylvi

I know a lady who has a little silk pouch full of wine bottle corks (real cork, not the plastic ones.) in her bedv& she swears they stop her getting cramp

But i surmise it might be something to do with what was in those wine bottles!

But I guess anything is worth a try?

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keeta
keeta
in reply to AgedCrone

Ha ha love it.

If it doesn.t work i.ll try the fine wine.😴😴😴😴

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Chongo
Chongo
in reply to sylvi

Thanks, sylvi, that is next on my list, AC's banana suggestion is working well. I mentioned your soap idea with Shaz, she reckons it's a great idea and said lavender scented soap would also have a calming effect. So as soon as l get back to civilization, I'll be getting hold of some lavender soap. Thanks again.

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