new page fibro friends x

Oh..... Ses, how much more are they going to throw at you :?: Someone said to me once that God only sends the problems to the people he knows can cope with them :!: My reply was that he`s picked the wrong one here. You certainly have more than your fair share :!: Been having a rough few days, but when I hear all that you have to cope with, it makes my fatigue and stiffness seem minor. I do hope all goes well and you finally get some answers and some help to make things at least more comfortable for you. As to your central heating, my husband seems to think we are the only household that gets these sort of prblems, (had no heat in our living room for four days this week) so maybe your problem will do me a favour if it helps him to realise we are not alone :!:

Hope you are having a better day Di, and Tess I hope your cold has finally cleared up.

Hope everyone else is ok especially Helen as we have not heard from her for a while.

Love Linda

Yeah as I got the boiler installed four years ago, as we are on tax credits we were eligible for a new heating system and I thought I would ask whether there was further help, one women said it could be still under guarantee, but obviously not :roll: and so A guy that I know whom owns his own business I have asked him to sort it out as I feel knowing someone is better than trying someone who could try it on!!!! as you hear these stories eh!!!! Anyway he came today and he checked it over and he said it could be one of two things and so he is going to replace one part first (the cheapest) and then he will go for the next one if that doesn't work!!!! as he will have to order the parts!!!!

Anyway I am so fed up with one thing and another, pains and now this!!!!!!!....... I just seem to be moaning all the time and I am only 36 I feel like OMG I am 40 in under four years I thought life begun then!!!!! Sorry waffling and moaning again....... You have your fair share of bother and it's unfair for you too hun xxxx your a star for coping like you do with your hubby xxx I do hope he is having a good day xxxxx

Anyway Love to everyone and so sorry for the winging xxxxxx

Take care everyone

ses...... people think that we shouldnt worry about things like the boiler but when something isnt working and going to cost u money u have not got of course ur going to worry.. im like u i get myself all stressed out..

anyway on a fun note..... went to see Fame, at the theatre last night and it was fab had a real good time. went for a indian meal first so it was a successful night, prob pay for it later today though.. but i was glad i could get out with my husband as i feel he hasnt got much of a \"normal\" life..

but he said something last night that made me think.. he said... when u get rid of this fibro and are better we should start going out more... my god has he not listened or take in any imfomation i have been trying to get him to understand.. i wont get better this is me for life . i do hope i can get help to control it and will keep fighting for the help i need , but i feel he just hasnt realised what is ahead of us..im i wrong in thinking this?

I do hope everyone is ok.... anyone heard from Helen im really concerned that she is ok?

keep the posts coming in its so nice to hear how my dear friends are doing...

luv and hugs.. di xx

Yes Di, I`m like you and Ses I get stressed out about things, always have. I know it doesn`t help the fibro to get stressed but healthy people stress about things like ses`s boiler etc. It just doesn`t have the same effect on them as it does us with fibro.

I don`t blame you for thinking like you do, Di, you`ve tried so hard to explain things to your hubby and it seems as if he hasn`t taken it in. On the other hand I know of several males in our family who just can`t accept health issues and think if they ignore it it will go away :!: Unfortunately that`s not the case, and when things come to a head or get worse it`s even harder to accept. Do you have other family members or friends who do understand and realise the extent of this illness :?: Perhaps one of them could talk to him.

I got up this morning still very stiff, but for the first time in ages I wasn`t so fatigued and didn`t fall asleep after breakfast :!: I was actually able to do some of the \"must do\" jobs on my list. Expect it will wash over me soon and render me useless :!:

Well been resting all afternoon, so going to get some dinner organised before it does.

Take care everyone, I`ve been wondering about Helen too.......

Love Linda

well I am in agony........ the cold is somehow penetrating through my hip and it is agony....... but hey we have just got to put up with it!!!!

So nice to hear you had a good time Di, bless you hun, maybe you should take your hubby to your consultant appointments and then maybe he might realize the outcome, that it is with us for life, and sometimes we have better days than others, flare ups are bad, and the good days we try and do things \"normal\" people normally do!!!! anyway hun I do hope there is many other occasions you are able to go out, the last time we went out as a couple was when it was my sister's wedding and hey I was in tears due to my hip pain so it wasn't enjoyable as it should be!!!! nice to hear you had a good time hun xxxx

Linda, so glad you woke up not as fatigued bless you too hun xxx the stiffness does get us down hey!!!! and nice to hear you got your jobs done xxxx it makes us feel a bit better when we are able to do the chores xxxx

I have two hot water bottles one on my spine and one on my hip so not much fun with me at the moment, just hoping the Specialist can help

me???

Take care everyone and I do hope helen is ok too........ I hope Tess and Lindy are ok too xxxx

hugs x

I am ok apart from the normal daily aches and pains. :cry: Have been a bit busy last couple of days helping my son sort things out for going back to Uni. He went back yesterday my husband took him back to Preston. Was a good journey and they used the tom tom that I bought Stewart for Christmas. Made it a lot easier. :lol: Will come in really handy as well when we next go out travelling in our motor home. Looking forward to that! Well looked after Sophie for a couple of hours yesterday while Amy, Andrew took Molly to cinema for a treat. :lol: She was a good girl and had a couple of bottles and sleep while she was with me. She does get very impatient though for her feed. Had to ask Amy to loosen lids on the bottles for me before she went as my grip isn't very good. :cry:

Well Ses what a time you are having. It really makes you cross when something goes wrong straight after Christmas. Normally it is my washing machine and that really does frustrate me. I think it is my worse thing to go wrong. :cry: Sorry to hear your liver function test was not very good and you have autoimmune hepaitis. What is auto hepaitis! Do you have to see the same doctor you did before I could you see someone different. :cry: I thought things would get better when I turned 40 Ses but that was the year I had thyroid cancer. Now I am in my 52 have this fibro thingy to deal with. Lets hope when I am 60 things will be better, at least menopause should be done and dusted lol :roll:

Linda things do happen to us all but your husband and yourself have had a lot to deal with over the years. It doesn't seem really fair at times. :cry: My cold is a lot better now and started my exercises today.

Have done two lots! Thought better get started as see physio on Feb 13.

It is really good to hear you didn't feel so fatigued the other day hope it lasts for you. Yes I hope Helen is ok as we haven't heard from her. She was waiting to see about the lump on her foot.

Di I am so pleased you manage an evening out with your husband. :lol: It is good to do something together when you can. Its a pity your husband hasn't really taken it in that fibro won't go away. Like Ses said if he went along to appoints with you he might see that it won't go away. Not to say we don't have some good times and bad. My husband came in with me when the rheum told me I had fibro. So Stewart does understand it won't go away so we have to adjust and go with it. :lol: Not easy when your having a bad day though. :cry:

Well Lindy Like Ses said I hope you are ok to and not working too hard.

Take care everyone!

Love Tess x x

The doctor suspects auto immune hepatitis and so I am to see the Specialist so its not diagnosed as of yet? hopefully it is just speculation........ Autoimmune hepatitis is a disease in which the body’s immune system attacks liver cells. One job of the immune system is to protect the body from viruses, bacteria, and other living organisms. The immune system usually does not react against the body’s own cells. However, sometimes it attacks the cells it is supposed to protect; this response is called autoimmunity. Researchers think certain bacteria, viruses, toxins, and drugs trigger an autoimmune response in people who are genetically susceptible to developing an autoimmune disorder............. I am so hoping I do not have this won't find out until next month????? a different Rhemo I am seeing so hopefully he helps me?

Nice to hear you have time with Sophie xxxx yes I know what you mean about bottles etc I also have trouble with things and my hands kind of seize up and so I have problems holding things too long also :oops: I hope everything goes ok with your Physio too and so glad to hear you are feeling better :cheerup:

Well my dear friends I do hope you are all having a good day and I hope everyone gets a good night sleep and I hope everyone is wrapped up keeping warm ........ well away from drafts and this awful cold weather :blue:

Take care xxxx

well nice to read ur posts, i feel now u have all become very good friends of mine and i was thinking.. wouldnt it be so nice to meet up one day????

anyway got up this morning took my painkillers and felt no to bad, done a bit housework and then felt really tired so about 2pm went for a wee lie down on my bed.. but after a hour i got up and have felt ill ever since.. A aunt of mine called me today and i was trying to tell her about how i dont cope everyday, but u ever get the feeling people think..just get on with it i have to, so felt a bit let down after the call... my eldest son chris stripped his room today ready to be done up but we have only been asking him for 6 months so thats no bad going eh lol, was watching dancing on ice and never realised how enjoyable it was, just wish i could even walk across the ice with my flat shoes on lol.. anyway been reading the written report the doc done that was sent from the dwp, it goes to show he never even listened to what i said.. put on it.. can climb stairs, doesnt require help in night... GOD i told him i did.. and i do.. so guess this means i have to fight harder at my appeal on the 26th jan.. well i will stop going on.. hope ur all not to bad and hope to hear from u all soon.. luv di xx

On the doctors notes ....... did you have someone with you on that day? as they are your back up if they were and they can fight your case with you hun!!!! I will be fighting my case too and I am looking for a welfare adviser to come to my appeal if I can as with the fibrofog I think I would forget things and go blank....... as you do......

Yeah I watched dancing on ice and I think the young lad......can't remember his name him that was on x-factor...... oh yes Ray will win just got a feeling :wink:

I have my council tax appeal too this month and I am so not looking forward to this.... as I have paid full since 2002 not realizing I/we were eligible, as back then I applied I think and was turned down but as I applied for this year I pay roughly about £14 instead of £98 so a big difference....... and all the stress and worry this blas**** bill has caused it has made me mad..... bailiff etc..... and I bet you they will not refund me at this appeal!!!!! :oops: and yet if you owe them money they are down on you like a ton of bricks....... my argument is whilst I was struggling to pay this in full I phoned the office which deals with the coucil tax and they did not offer me any assistance......like how about trying if you can get help....... and while tax credits are in our income as I have worked part-time since having my daughter 15 you do not automatically get benefit forms like you do on JSA or income support so I am fighting this too as the system is all wrong!!!!! anyway watch this space :roll:

Yeah it would be great one day us all meet up....... would even be nice if we could all meet somewhere warm too lol well I couldn't sleep so here I am at 2.33 am and so I guess I better try and go back to bed???? the winds blowing gale force outside so that is keeping me awake...... don't like the wind but thankfully I am in here and not out there :lol:

I do hope you all are sleeping now and so sweet dreams xxxx

Hugs n kisses xxxx

Ses, is council tax benefit the same where ever you live or does it depend on different councils? Ray gets council tax benefit and I`m sure when I finished work and he applied there were different rules if you are in receipt of DLA. You maybe already know this, also there was a certain amount of time for which you could have it back dated and he received the full amount.

Yea I watched dancing on ice too just because Ray Quinn was in it (sad aren`t I) he was certainly good though :!:

Di, I know just what you mean about doctor`s letters, my GP was away for 6 months when applied for DLA and I had only seen the locum once, I know my GP had put in my notes that I would find shopping etc difficult if it wasn`t for Ray`s mobility car and blue parking badge :!: Anyway they said I didn`t qualify as I didn`t need help with bathing, haven`t had a bath in over 2 yrs and its like climbing a mountain just getting into and standing in the bath for a shower. I could climb stairs and I can`t and I didn`t have falls which I have had six of altogether :!: What a joke this benefit is :!:

Tess, so glad you are ok how lovely to have sophie for a few hours. I can`t undo jars and grip things either, I also drop things or miss things when I try to pick them up, my hand just doesn`t semm to go where my brain wants it to :!:

Well busy day today, giving my friend/neighbour a lift to Addenbrookes and moral support, been ill since summer with ovarian cysts, which burst and all sorts. Has two little boys but can`t help with school run as its too far, but can take her to appointments. Makes me feel better being able to do something useful instead of sitting around the house all day :!: Then this afternoon going to GP about my weight :!: lol I`m not expecting a good response as he wasn`t very helpful with Ray. So if I don`t get anywhere will see one of the other Dr.s next time. He told Ray that if he didn`t lose weight he was eating too much, even if he only had one meal a day it was too much for him :!: Watch this space.

Well hope you are all not in too much pain and have a reasonable day

Love Linda

what a life eh.. ses.. yes john my husband was with me... he broke down at one point and told the doctor how hard he is finding my illness.(seeing a man cry just makes me feel so guilty and sad) anyway... he never put that in his report so just goes to show he wasnt very good... anyway i know how u feel about helping a neighbour it does make u feel better if u feel ur acheiving something..

benefits i dont understand them... we fight cause we are ill how do those lingerers get it what do they know about the system that we obviously dont. I did read somewhere that if ur on dla u can get help but in my case cause my husband is in a full time job we dont get anyhelp... but we still struggle as we have a high mortgage due to us having to keep borrowing on it to keep us going..

so we have to keep fighting those people.. we DESERVE help..

hope u get on ok ses with ur council tax keep us posted..

right im going to try and do some housework.. and i mean try lol

luv di xx

Well, was quite surprised at doctors this afternoon :!: He was actually much more helpful than I expected. Said my weight was way too much and gave bits of advice, then prescribed Orlistat (I think) for a month. If I lose weight I can carry on with it if not, well I think its down to me then :!: Has anyone else taken this drug :?: Would be glad to hear their experiences :!:

Take car all

Love Linda

Yes I have been watching dancing on ice too! Ray was really good for his first performance on the ice. :lol:

Hope everyone not in too much pain today!

Good news you got on well at the drs today Linda. Hope you get on ok with your tablets. Don't know anything about them as not had them before. :cry:

Well take care all

Love Tess x x

can someone help me with a question.. been getting pain in middle of my chest for a couple of days now but more so today was out with son and had to stop a few times as i felt the pain coming on..its not very painful but it is a pain... would be grateful if anyone of my friends could help xx

di xx

Linda the Orlistat tablets are good but they helped me come out in spots...... I did loose over a stone but then they stopped working....... make sure you do cut down on your fat intake as you will soon know about it......... Orange Oil :oops: it only happened to me once but wasn't nice!!!! Glad to hear your doctor helped you hun!!!!

Diane is the pain near your right breast as I get a dull ache due to my acid reflux....... I was so startled by it and I went to the doctors scared as I was having problems breathing.......... however fibro can effect all muscles but to be on the safe side do get it checked out xxxxxx

Yeah it is so unfair that we are all entitled to the dla and other benefits but it is so hard to prove that fibro exists I think that is why we often have a struggle to gain benefits to help us?

Hope you are ok too Tess, I hope your resting and I hope everyone is coping with the cold weather xxxxx

Well my dear friends Hugs to you all xxxx

Goodnight god bless xxxxxx