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Date: 04.01.2010
From: Maddie

Subject: Hi everyone - just found your lovely site!!!

Hi to all...been fiddling around on google trying to find answers to some questions about diet and poss some "helpful" self-help tips when I stumbled across this site - would just like to say how helpful and supportive you all are...quite gives a girl goose bumps to see how loving and giving people can be.
I'm 56 and only recently diagnosed with lumbar spondylosis...I've had bouts of sciatica in the past but over the last few years have been finding my back's been stiff when I get up in the morning - went through changing mattresses thinking it was that - no joy...then I thought it was menopausal - they all tell you joint stiffness etc is to be expected so I tried to keep myself busy thinking it was the dreaded middle age meltdown - deep joy!!!
Then I moved back to UK from Cyprus and was decorating the new place...I was painting skirting boards and found I couldn't get up - literally could not get up!!!
Anyway, went to my GP and was quickly diagnosed with Lumbar Spondylosis which I soon learned was a form of osteo arthritis and prob caused by me being one of those independent women who has always just got on and done stuff myself...need to move a wardrobe? Don't wait for a bloke, do it myself - you know the type. I've run pubs for a long time and I've shifted heavy barrels and crates etc on my own and felt a lot of satisfaction that I've not sat about and been a delicate little flower but got on with life on my own terms. Turns out this way of being has caused the damage to my spine and I've only myself to blame.
It hit home the other day when I was out shopping and a v old lady in front of me at the checkout dropped something - my first reaction was to pick it up for her but she got there first!!!!
Imagine my annoyance when I find that I've knackered myself by being what I've always called "independent" and also that I can't be who I am any more...I find I can't do stuff I've always been able to do and taken for granted and I feel diminished in a sense...but hey - life goes on, doesn't it? It's a whole new year and life is all about learning new stuff...I'm going to have to learn to live with some new limitations...all advice welcome.
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Date: 04.01.2010
From: jill

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Maddie, welcome to your lovely forum...has your gp ever offeref yu a referal to a rhumatologist? seems to me that is your first point of call, U need to know what they can do for u....they r the experts, also have u had any MRI scans on your spine? U say that your gp said your diagnosis is lumber spondy...has he sent u for an xray? Just wondering how he decided it was lumber spondy, osteo etc, sorry to be nosy, just I believe that u should be seen by an expert like a Rhumatologist, who can also give u help with correct medication etc....

this is a great site to be on, ive been coming on almost daily(if not ill) for a year now, and the ppl are fab, lots different names pop in and lots of regulars, we all try and help each other as muich as possible... we also understand how u feel, becos how u described your life is how most of us are too, I certainly am, lol im an old crock a t the moment...wont bore u with my personal probs lol just yet, but its rubbish.......anyway, hope u return, and we will help u as much as we can...take care Jill
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Jill...thanks for your reply...my GP asked a lot of questions then told me to do a few bends - sideways and forwards and back and then said it was def lumbar spondylosis...I didn't need xray as it would just confirm his diagnosis. He sent me to physio at local hospital and offered painkillers which I refused as I didn't want to become dependent and it's not what I'd call agonising pain more deep misery and massive discomfort...my feeling was wait till it's needed - may have changed my mind recently as it seems to have escalated to a new level. Physio not really helpful - the lady was lovely but I felt the simple excercises she gave weren't helping me. Think I'll go back to GP and ask to see a specialist.
I find the worst thing is not being able to lie down for any length of time so, even though I'm really tired most of the time, I have to do a trade off - sleep for longer and pay the price with the inability to stand up the next morning or get up when I'm still tired but be able to move. Actually the very worst thing is I can't bend far enough to wipe my bum in the morning!!!! Lol...it really is rubbish, innit? Lovely to hear from you and take care...Maddie
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Date: 04.01.2010
From: Jill

Subject: Re: Hi everyone - just found your lovely site!!!

Awwww Maddie, I certainly know that feeeling, the wiping my bottie bit lolol.... but its serious to us isnt it.... Im curious about ya bck as I have had spine surgery, have 4 bolts in my spine as the discs wear away, 2 discs went and had the spine op in 2003, but now another disc above the first op has gone and now i need fusion....eeeeek!! worried bout that, tiook me 8 monthjs to get over the last spine op, also now need two shoulder ops, but that is to be confirmed bymy surgeon, rhumatologist saw my xrays and said I have impingement again!! already had both shoulders operated on 3 yearsz ago, that was a nitemare, couldnt sleep on the shoulder for over 3 months nearly 4 months...im in a mess at themo, I have Inflamatory Artha and DDD of back, and cervical spondy of the neck....thing is, is to stay Positive...I try, but the pain is dreadful, even tho I take Opiates for painkillers....hey ho....anyway, others on here will be a great support to u, as they r to me.....take care with that back of yours, rest when u can, but understand totally what u mean about sleeeping, nitemare ....Jill x
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Jill you sound like a true SUPERWOMAN!!!! All that and still you have time for others who are not, in reality, that bad - people like me who have never been ill in my life except for a nasty little bug called colitis which is one of those lovely things that flares up at times of stress...having an episode at the mo - think it may be connected to the back problem. Life's a bitch at times but I'm sure you're right - positive thinking is the only option...problems only get worse if you descend into the spiral of despair. Thanks so much for your advice, will go see my GP this week methinks...take care of yourself...Maddie..xx
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Date: 04.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Maddie!
I can imagine the change in lifestyle is a shock to the system. Its really frustrating not to be able to do things for yourself. Im 24 and am unable to touch my feet. I have RA by the way. It means even little things become stressful. My taps in the kitchen are too stiff and hurt my hands (Have to wait til finances settle until I can get them replaced) which means I often end up having a little cry when pouring myself a glass of water. Its very frustrating!
Jill is in fact superwoman. Its known amongst us all on the forum lol
If there are any questions or youre feeling generally crap (or happy in fact) then talking on here is good : )
Speak soon x
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Verity...you're so right...it does help to talk - actually, it's made me realise that I'm not that badly off...unlike heroes like yourself and Jill who must have to fight massive battles every day, I'm able to get by reasonably well...and yet here you are encouraging others...I'm humbled by the goodwill of strangers. Take care of yourself...Maddie...xx
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Date: 04.01.2010
From: KayJay

Subject: Re: Hi everyone - just found your lovely site!!!

Maddie. Yes I too tried to prove that "anything [ well ALMOST anything lol ] a guy can do I can do better !! " I even dug up roses while 8 months pregnant - I must have been mad and it is NOT at all recommended !!

I always did the decorating , gardening etc but am paying for it now. Ouch !!
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

KayJay...you just have to be the long lost identical twin I never knew I'd lost!!! Lol...I remember doing a heavy weekly shop on my own the day my daughter was born because I wasn't ill just pregnant!!! I've tried to tell my daughter - who is a total chip off the old block and does exactly the same as me and you - that a little help now may save her a lot of pain and frustration later...hope she listens. Take care..x
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Date: 04.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Maddie, just remember there may be people worse off but that doesn't make what youre feeling/suffering with any less important. If its changed your life and makes you feel bad then it can be just as emotionally consuming as it is for anyone else.
It helps me, speaking to other people that are also in a lot of pain. Although my boyfriend is wonderful and I couldn't manage without him, theres a certain amount of understanding that you can only get from others that suffer the same. Before coming across this website Id never spoken to other people in the same boat and its really helped me come to terms with the disease and how I feel about it.
I hope it can help you feel a little better about your illness too : )
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Verity...I have to agree...I've spoken to friends about this and told them what it is but they cannot get their heads round it...it's seen as a bit of a comedy ailment when I say I can't stand up straight in the morning - the response (not ill intended, I know this) has often been shall I get you a Zimmer frame for Christmas? They all know me as Maddie who's always done everything at 100mph and never had to ask for help...it can be emotionally draining to have to explain that I'm really not joking and I'm in a lot of physical misery all of the time even though it can't be seen. As you say, people on this site are in the same boat and so understanding - not to mention knowledgable - I'm sure talking to you all will help me...and, I hope, as I become more aware of the problems, I'll be able to help others too. Thank you so much and take care of yourself...xx
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Date: 04.01.2010
From: KayJay

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Maddie - long lost identical twin !! Yes we do ourselves no favours by taking it all on our shoulders - literally. But I think it's in the genes because Mum was exactly the same. She worked full time and used to decorate when me and little sis was asleep at night !! Wonderwoman !! She was a perfectionist so poor old Dad was not allowed to hang wall paper.

I walk with a stick and the Senoir Citizens overtake me on the pavement so it's a little soul destroying. But I think there are worse things that could be wrong with me and I feel so sorry for the younger gals who are in immense pain but still have to deal with younger children. At least I could do that when my kids were young so at the age of 55 [ nearly 56 ] I probably havn't done that bad. And yes I get the old zimmer frame remarks as well but just laugh along with them.

Seriously though have you been referred to a Rheumatologist and / or physio yet ?
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Date: 04.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

I too get the zimmer frame jokes although theyve calmed down now lol. People just dont know how to react to it I dont think. People joke about things if they feel uncomfortable or dont know much about the situation. Can't win em all I suppose lol!
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Date: 04.01.2010
From: sandra lowe

Subject: Re: Hi everyone - just found your lovely site!!!

hi maddie, i only found this site about 2 weeks ago and already i feel i have someone who knows what im going through, had RA for 33years and friends would ask How are you? and then after telling them they would say but you dont look sick! i use to say to my husband im not wearing anymore make up, but like you would be very independent struggled to look after my children and do housework as best i could, have felt sometimes about getting zimmer frame and see their faces!
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Hi KayJay, Verity and Sandra...or should I call you/us all the Zimmer Frame Chicks?! Lol...it has a bit of ring to it methinks!!!
Just been to my son's for dinner...what a good cook he is - he did some good old fish and chips with this gorgeous batter recipe he's just found that's made with beer...crispy and delish!!! Yum.
I honestly don't know how you manage to hold down jobs and bring up families with this disease...I'm lucky - like KayJay - that I got all that done and dusted before this happened...really don't know if I'd have coped v well - mucho respect to everyone who is managing.
I haven't been referred to a rheumatologist as yet but have had some physio sessions...haven't found them too helpful but I'm still doing the exercises...think I'll go back to my GP and seek further help. I've learned such a lot just reading the posts on here. Take care - especially in this cold weather...xx
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Date: 04.01.2010
From: KayJay

Subject: Re: Hi everyone - just found your lovely site!!!

Maddie have the phypios mentioned hydrotherapy yet ? I had to do this because I can't do " dry land " exercises because of arther in my ankle as it swells up like a balloon !! I found it very relaxing and looked forward to each session.
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Hi KayJay..nothing mentioned yet but I've seen a couple of other threads talking about it and it sounds fab...think I'll have a word and see if it's on offer. I live in a v small town so might not have facilities here but it's worth asking...if you don't ask you def don't get...xx
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Date: 04.01.2010
From: valh:-)

Subject: Re: Hi everyone - just found your lovely site!!!

hi maddie welcome there r lots of great people on here always some one has an answer. or just listen when things r not going so well
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Date: 04.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Maddie, I haven't had children yet but definately plan to. Me and my bf both want them and I refuse to let this stupid disease dictate whether I have a family or not. I suppose the good thing is that it couldn't possibly be a mistake due to the amount of planning and support from docs Im gonna need. Dreading coming off the meds but not gonna worry about it for another few years. Im 24 now and hope to have one before Im 30. Its quite scary looking into what I'll need etc. No surprise pregnancies or accidents!
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Date: 04.01.2010
From: Maddie

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Verity...good for you, girl...your life belongs to you not the disease!! I'm sure you'll rise to the challenges when the time's right for you...xx
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Date: 05.01.2010
From: Amelia

Subject: Re: Hi everyone - just found your lovely site!!!

Hi maddie

I'm 26 and have 2 sons 7 and 5 and i have had RA since i was 22!!! Also know what you mean about the zimmer frame jokes not nice is it! i had my own mother joke about getting a wheel chair for me, at the time it really upset me but, not no more.
I think you will really enjoy this website i only come on now and again and find some really useful advice.

Take care Amelia x
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Date: 05.01.2010
From: jill

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Amelia Good to see u there, hope u had a fab crimbo and Happy New year to u x ps how u doing?
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Date: 05.01.2010
From: Luigi

Subject: Re: Hi everyone - just found your lovely site!!!

Hello everyone. I too have just found this site having been told by my GP yesterday that my blood tests came back showing I 'probably' have RA She is referring me to a rheumatologist, although how long that will take I have no idea! I thought I had tennis elbows (not that I've ever played!!)which is why I went to her in the first place, but after 4 physio sessions on both elbows and my lower back (the pain was more more in my buttocks actually) I am no better at all. I spoke to my twin sister this evening to see if she has ever been diagnosed, but her doctor has only ever said 'lose weight and excercise more' when she describes her discomfort. She actually said to me the worst thing is struggling to wipe her bum in the morning because she's so stiff. I am very apprehensive about what the future holds, but until I know more details I should reserve judgement I suppose....Thanks for reading,
Luigi
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Date: 05.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Luigi, I hope the rheumatologist can provide you with some answers because I bet not knowing for sure is pretty stressful. Ive never had pain in my buttocks but maybe someone else on here has? Take Care x
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Date: 05.01.2010
From: Luigi

Subject: Re: Hi everyone - just found your lovely site!!!

Thanks for replying Verity. The pain really just feels like pain right at the base of my spine, its only when the physio started prodding and kneading and had me yelping in pain (and I was paying for the pleasure!) that she pointed out that it is actually in the buttocks.
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Date: 05.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

I find that I get muscle pain in my back. I think its because the joints in my back are sore, your muscles tend to compensate and get tight and stressed. Do you not get physio through the NHS?
Hope you feel a little better tomorrow.
Speak soon, night night! x
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Date: 06.01.2010
From: Luigi

Subject: Re: Hi everyone - just found your lovely site!!!

Good Morning! Physio on the NHS??? Only if I was prepared to wait for weeks and weeks, so I ended up paying for it. 30 per half hour session. Not sure if that's cheap or not, but at least I can make the choice about how often I go. I was hoping to have a back & shoulder massage tonight (I try to have one every fortnight at the moment) but the weather means the therapist cant get to my house....I hope the snow and cold isn't affecting you all too much
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Date: 06.01.2010
From: Verity

Subject: Re: Hi everyone - just found your lovely site!!!

God Morning Luigi! I think I must have been quite lucky with physio as I got it almost straight away. Its really unfair that others have to wait so long. Iused to have regular massages on my bad and it really helped butunfortunately the costwas too great sohad to stop although I always go to the same guy because he knows my body.
If you can afford it then keep at it Luigi : )
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Date: 06.01.2010
From: jill

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Luigi, Welcome to this fab forum, Hi Verity x

Luigi back pain usually hits the buttocks area, when the physio pressed on ya buttocks, thye fact u mentioned to her u have lower back pain, maybe she was seeing if it has affected your buttocks, shows her how bad your lumber region is, propb inflamation in the butt perhaps, I get have severe back pain(had spine op 2003, need another one now) but b4 the first spine op, the lower back was severe pain, and the pain travelled down into my buttocks area, and down into my thighs, Nitemare!... regards Physio, u can usually get it on the mhs, Y dont u get yourself on the list, pay privately meanwhile until u get it on NHS, but they dont home visit, yu have to go there.....u r entitled to NHS physio, but understand y u r having physio now.

anyway, this forum is gret for helping people, gives good advice and support when we need it, we also have a laugh too....

take care

Jill
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Date: 07.01.2010
From: Amelia

Subject: Re: Hi everyone - just found your lovely site!!!

Hiya Jill yeah xmas was ok i had a big flare up over crimbo so wasn't able to do much!!! But other than it was nice lol

How about you, how was your xmas? been reading through some posts your going through it a bit, when's your next op and where?

I went to see my consultant and he has lowered my mtrx8 to 10mg now and put me on Leflunomide 20mg which i have to take daily just hope it helps! I asked about injections but consultant said i don't meet their criteria yet grrrr he basically said i have to try 3 different tablets first over a period of time then i can go on them!

Amelia x
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Date: 08.01.2010
From: Jill

Subject: Re: Hi everyone - just found your lovely site!!!

Hi Amelia, yea they r very strict, for lots of reasons....I dont know much about leflunomide soz... I didnt try three diff tablest tho...was first offered MTX, made no diff, then given sulfasalazine(made me ill for 6 months), then just on MTX for a while longer, got worse and them given Enbrel Anti TNF....did/does help, just im going thru it a bit....we all do at some time or another, drives me Nutsssssss...... U take care ok....come bk to us soon xx
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Date: 08.01.2010
From: jill

Subject: Re: Hi everyone - just found your lovely site!!!

Maddie LOl at Zimmer Frame chick.... Im a Mobility Bird(like Angela) lol we have the scoooters...such fun to use, love going down the hills, anyway Maddie, U made me blush reading that u think im Superwoman.....im truly not, most of us are serious, I just tend to say how I feel.... mind u, and not being conceited, but it does seem I have had lots more corrective surgeries than say lots of us luffly peeps in here, thank god.....but I do question Y I have had to have so many, 7 since 2003, lot innit, thing is, inbetween the recovery of the ops, i had flare ups to deal with and still joint pain in other joints, even tho had corrective surgery, I was never painfree...Oh well, thats the card ive been given in life, I will blidddy welll fight, I refuse to have my Personailty taken away with my joints lol........ I personally prefer to give support and hugs to peeps than talk about my miserable problems, but Ive been bad lately, so I have whinged on and on and on lol.......but I prefer to read posts and sometimes I feel so sad about how people get treated....a lot of us have gone thruy the system and can help others cut corners, kinda.....some of our memebers get Fobbed off, its unfair, so I will try and support them, infact All of us do that in here, if we read something we dont like that has happened to someone we will ask them nicely to fight for their rights, and explain a few examples, thas Y I asked You about your painful back.......PLEASE get a referal to an expert Rhumatologist...Promise us......lol....I like u Maddie, yur fun, intelligent, and U care......so please stay in our cosy little forum, we r a great bunch collectively, altho we do get the Odd Nutcase! dont worry, I Run em ottta here hhehehehe...... take care now, sorry its long, and ive rambled on...ps there r plenty of superwomen in here......Infact they all are.....xx
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