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Date: 09.09.2009
From: j

Subject: newbies and previous members to forum

Hi guys

dont want to moan lol.... just want to ask a question..... and mb make a request..... I love this forum....it can be so useful to all of us, ive been coming in here for approx 6 months.....people come and go, asking questiuons and replying to answers etc, fabulous, we learn about some of u, and never hear again.... which is sooo sad.....

some of us try ane come in regularly, two reasons for that...1. cos I like to help people if I can with their worries, especially the recent diagnosed that r worried and scared of what happens next etc......

2. becos a forum like this is what is need for any one of us that has this disease.... we can ask questions, learn much more about this insidious painful disease, winge, moan, complain, cry, scream, shout....and none of us ever makes a jusgment of a person...... I certainly have had my concernd and problems recently, slightly off topic, but at the end of the day, its also about my well being, and stress can cause flare ups.... so I have needed to chat with friends......and get it offf my chest.....

it would be great if we could have more people come in on a regular basis, to pop in now and then, or regularly, to Help keep this forum tip top and very informative, if people dont bother coming back, information becomes limited.... if none of us bothered, when a person needs support, mb this forum wont be operating, becos the info wont be there.......... maybe im living in a dreamworld...... but I make the effort to stay in the forum on a daily basis.....I like to help others, mb becos im naturally nosy, but mainly becos I do care........I also need support... and I also enjoy making a smalll difference...... recently some of the info has beeen incredible that has been posted in.... information to us about the DLA etc.... and more importantly, that peeps r NOT alone..... we r in this together, and can deffffo make a small difference, hopefully a big one...... but a difference all the same.......

I also know that some ppl have felt so much more Positive after visiting the forum, that makes us happy.......... PLEASE please try and come back, we all live busy lives....... but we all need to think of others too

off my soap box now lol..... thanks for listeneing...... take care one and all


Jill...... now a regular for some months!
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Date: 09.09.2009
From: sharon

Subject: Re: newbies and previous members to forum

i agree with u jill i found this site to very friendly and helpful plus its nice to be able to talk to people that understand where u coming from i try to look in at least once a day sometimes more just to see whats happening to everybody hope u less stressed today take care
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Date: 09.09.2009
From: bernie

Subject: Re: newbies and previous members to forum

Hello all, I know I havn't been on for a while,why?. Well at times I just wasn't in the mood, no reflection on the site, it's just that I have been a bit depressed lately. I'm suffering badly with my fibromyalgia, now my skin has decided to start burning, it's like having bad sunburn all over, you know that feeling when you put clothes on sunburn, very sore. I can barely walk today, I think the only part of my body that doesn't hurt at the moment is my head. Even to sit here, slightly bending over hurts my tummy.
Oh what do I do, is there anyone else that had or has this problem, I could realy do with some help or advice. Thanks for taking the time to read this.
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Date: 09.09.2009
From: monica

Subject: Re: newbies and previous members to forum

Hi Bernie
So sorry to hear about your illness, it does sound uncomfortable. I take it you have seen a doctor, had blood tests, are there any natural oils or minerals missing in your body to make your skin like this? do you drink enough, i know that probably sounds like a daft question, but your skin can get really dehydrated if you dont drink enough. Fibromyalgia, i know it can be very depressing as can all our problems on this site, I take it you have seen a skin specialist. I guess it can have something to do with arthritis, i know quite a few people on the site state they get hot, as i do myself, but not to the decree you have. I do hope you find a solution soon. Perhaps Jill or lynne on the site can help you more, they have alot more expertise than me, i am fairly new. Take care.
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Date: 09.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

hi hope u do not have a leather sette that can cause skin probs what did doc say?
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Date: 09.09.2009
From: bernie

Subject: Re: newbies and previous members to forum

Evening all,thanks for the replies,i drink about 2 litres of water a day so i don't think it's that, and i don't have a leather sofa.don't know what's going on but i think i'll go back to the doc on friday cus i'm getting more housebound with this.if i cant wear clothes i can't go out,it wouldnt be a nice sight,lol.im going to see a woman on saturday who does biodynamics,have any of you done anything like this?i'm not sure about it.
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Date: 09.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

if see pic in paper of lady out shopping with no clothes on will know it is u and will know what u look like. hope doc sorts u
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Date: 09.09.2009
From: bernie

Subject: Re: newbies and previous members to forum

oh imagin,lol.i'm lying here in bed with a cold facecloth on each leg, it's helping a bit.
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Date: 09.09.2009
From: DELLA

Subject: Re: newbies and previous members to forum

Oh! Jill bless u i found this site so helpful when i came on you,Val,Lynn were all so supportive. I must admit i haven't been on much as i did but been a really hectic time for me at the moment and like bernie said sometimes when i feel depressed you just don't feel like it and i try to push the arthritis to the back of my mind and dont want to even think about it, although the pain is always there but maybe i have been wrong and should have came here when i am feeling like that it's just that someties it feels like all you do is moan.Anyway i'm here to stay Jill so you wont get rid of me that quick x
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Date: 10.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

bernie what a thought face cloths bless u hope they helping. sat with legs up as feet and knees not to good been over doing things again grrrrr.
della welcome back does not matter if all u do is moan it gets it off your chest. but u dont u have a lot of positive things to say as well take care we missed u
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Date: 10.09.2009
From: bernie

Subject: Re: newbies and previous members to forum

hello people.I think I know why my skin is burning,I think it's the tramadol. Although i've been on them ages, it's just affecting me now. I know i'm alergic to coedeine and tramadol are opiods but they never affected me before, whats going on?If that's the case, what else can I take?Any suggestions?
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Date: 10.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

wish i could help u but new to all this bet u glad u know what causing it good luck sure u will get some other pain killers
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Date: 11.09.2009
From: Jules

Subject: Re: newbies and previous members to forum

No not been on that med I think you should ring your rheumy nurse as soon as poss she will be able to tell you if it is an alergic reaction. If your worried over the weekend ring N H S direct.
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Date: 11.09.2009
From: bernie

Subject: Re: newbies and previous members to forum

Thanks for your replies, I asked the chemist today and she said it's probably the Lyrica because it's been increased over the past few weeks, I'll see how it goes over the weekend and if it's still the same I'll go back to gp, i'd say she is sick looking at me, she may get used to it, ha.
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Date: 11.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

hi bet u make her day we got to keep them on there toes these docs must get fed up of swine flu lol
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Date: 12.09.2009
From: Kirsty

Subject: Re: newbies and previous members to forum

Hi Bernie,
I have to say two things -
1. I think you have such a cool name, and
2. I hope you feel better soon :]

Forgive me if this is a silly question, but with fibromyalgia do you have special soap and things? I have bad exzema which is a skin condition and Oilatum sometimes helps...or wearing cotton.

I don't know if it'll help, just sokme suggestions.

Take care xx
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Date: 12.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

kirsty how u doing have they found out why u getting the pain yet. bet your place filling up with strange students ready for freshers week enjoy it rest when u can but join in all the fun. and let us know how u doing from time to time
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Date: 13.09.2009
From: Bernie

Subject: Re: newbies and previous members to forum

Hi Kirsty, how are you? Thank you for the lovely compliment. Regards to using special soaps, no I don't have to, fibromyalgia affects all the muscles. I've been putting oil on my skin lately cus my skin is so dry. but I'm sure Oilatum would help. May I make a sugestion? I know about oilatum, in fact it is made in my town, hae you tried oilatum plus, it's the blue bottle. I was a sufferer of psoriasis a few yers ago and a friend who works in the factory gave me a few bottles, I bathed every day in oilatun plus, sometimes twice a day,and it cleared it all up, and I had it all over my body, I don't even have a mark, so it would be worth a try for your exzema, it should be on prescription. I hope I was of some help.
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Date: 13.09.2009
From: Kirsty

Subject: Re: newbies and previous members to forum

Hi Bernie, thanks for the advice!
I have Oilatum...I think it might be the plus...it's the one that goes in the bath. I'll have a look when I'm at home.

I was in Cornwall a few days ago and found oilatum in a soap bar in Boots. Come back to Devon and can't find it anywhere, and the doctors can't put it on percription. I would be nice to shower rather than bath all the time. I might go out hunting again tomorrow for it.

Are you feeling any better today?
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Date: 13.09.2009
From: jill

Subject: Re: newbies and previous members to forum

Kirstyyyyyyyyyyyy x Valllllllipops x hi just popping in, doing ok...still at m8s, shes at work tho and in looking after her little girl 8yrs and my son 10yrs...they get on fabulously... i slept last night guys(dont get jelous now) lol went to bed at 11..woke up at 3 for a wee wee, then slept till 11.45..omg..my brain is so frazzzled ive slept like a baby since being with my best m8.......ive relaxed a lot.... and assuming my other son does go bk to skool nxt week without hassle, I will return home....sounds daft i know....but this prob has been going on for 9 monhts, i finally flippped....seriously gals i went mental for a few hours...was scary...can happen to any one.....anyway. enuff of that....hope u r all ok....i do want to go bk home....misssing my usual life etc.... oh well.....sww wot happens by tuesday..... hope u r ok....read Lynnes unwell...so Lynnney get well soon....val hope ur ok too...kirsty ty for your texts, u too Val....sharon keep ya chin up ok.....go see that doc , my gals have asthma, it has to be checked out ok....especially b4 u begin Uni...look after yourself.......misssing u all,...take care ok xxx
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Date: 13.09.2009
From: jill

Subject: Re: newbies and previous members to forum

bernie hi, dellla hi.....sorry you r struggling at the mo... i dont know anything about fibro bernie, just mnake sure u have the correct meds for u.... and for u dellla....I also know wot u mean when u feel quite depressed we dont want to come on here......i havnt beeen on either for the same reason, but I kninda feel i owe it to the group that ive popped in to say hi,,,all is well etc..... guys keep positive ok.....positivity is everything.......stay well my m8s xx
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Date: 13.09.2009
From: Kirsty

Subject: Re: newbies and previous members to forum

Hey Jill :]
I can't wait until everyone's back on here again.
We all love you Jill, stay happyas best as you can xxxxxxxxx
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Date: 15.09.2009
From: Della

Subject: Re: newbies and previous members to forum

well my lovlies its 3.15am and i'm up again whats new ay , so reading through the posts gonna try go to bed soon though. Back and feet killing me at the moment feels like someone putting hot coals on my feet grrrr anyway spk soon peeps thought i would just pop in xx
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Date: 15.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

hi della sorry u had a bad night again. hope today a much better one hate it when feet get like that so painfull take care
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Date: 15.09.2009
From: Della

Subject: Re: newbies and previous members to forum

thanks val sat there playing yahtzee lol im addicted x
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Date: 16.09.2009
From: lynh

Subject: Re: newbies and previous members to forum

guys really glad to read all your news. I agree that this forum is gr8 and often read it but don't join in often in case people think i'm being bossy or something.
I do think that arthritis affects everything including in my case my confidence, especially since i had to retire from my job as a physiotherapist thru ill health.

Incidentally why do leather suite affect the skin?
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Date: 16.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

lynh we would never think u bossy that jill lol come on save me having my name all over it love to hear what others have to say . leather suites some of them got nasty chemicals in to stop fungus growing made in china ect causes reaction in some people
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Date: 16.09.2009
From: Janet

Subject: Re: newbies and previous members to forum

OMG how do you know which ones can affect you?
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Date: 16.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

your skin looks like u been on sun bed to long think u ok or you would know about it. been on telly quite a bit
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Date: 17.09.2009
From: jill

Subject: Re: newbies and previous members to forum

LYNH hi there....please come in and join our convos....we do not judge anyone in here...we r all the same..... everyone in here is important....some of us come in here more than others, but we r here to try and support all of u,us, anyone....in here we scream, shout larf, giggle, moan, but most of all support each other.

look forward to having convos with u.....have a leather suite, its gorjus, have no probs with it at all...mine u, it cost me £3half thousand quid 7 years ago, soz not bragging here, but mb there is too many colour chemicals in yours ? ? take care
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Date: 17.09.2009
From: val h :-)

Subject: Re: newbies and previous members to forum

yours will be ok it the ones fetched in from abroad that some have probs with but not all
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