hi everyone, sorry not been around but had grear problem getting to the site, anyway its nice to see so many of you have responded but end of the day, we just left to deal with life changing illness. so much has happened since my last visit, and all for the worse, other dignoses,other treatments, or attempt of it!, foot been dignosed with Algo....... something or other, left hip and right knee with OA, still back and forth to hos,with no luck and to make it worse, about 3weeks ago had little accident on left leg, just landed on it bad, and left me in more damn pain on hip and right knee. ahh the list goes on,am so down and fed up that after 30years of hard work to make life for myself and Katie, now due to this illness, am down to this housebound, fully, in pain even more day and night, and just dont know what else to do or not so it dont add to the pain. anyway at least good to be back with you guys and hope to chat soon, pls feel free to email me if you wish and if can be of any help be only too glad. now time to rest for bit, damn this so called LIFE. take care all.

 

Ellie

xx

hi helen, hope you got my little msg the other night, pls dont thing i ignored you as had bad time getting to the site, i\d love to talk to you too as i too am in so much pain and its on increase, anyway pls feel free to contact me when you can. look forward to it.

 

take care

Ellie

x

Hello,

My health has been detoriating for the past 14 years, no one really knew what it was, then saw a consultant of Neurology who put me in for some tests, MRI, electrobes etc. I was first diagnosed with MS but after a further 6 months they came to conclusion that it was Fibromyalgia, so was diagnosed in Nov 2006, since then have had to give up work, and although being an artist i struggle to do even the simple things in daily life, like holding a pencil or paintbrush on a bad day, mostly on a bad day i seem to spend it confined to the bed. my consultant has informed me recently, that as no cure, there isnt much he can do apart from continue to take the pain killers, so i left to fend for myself, on top of this I have been told in the last week, that my DLA is to be cancelled come April this year, although I have put in for appeal, things are looking bleak, as told by income support, if my DLA does run out in April, then my Income support will also be reduced, and apart from still being able to get housing benefit, I will have to survive on just £7 per week, I dont understand, how when I got my DLA originally I hadnt been diagnosed, but now I have they can take this away from me, obviously £7 a week will not pay the household bills and food etc so am beginning to feel that come April /May time I will end up being homeless, with a condition I cant do anything about, like work or even be able to survive. I live in Derby, and I am in desperate need of advise from anyone?

thank you 

hi andyderby, just quuick reply to yr posting as am in much pain, but do what i did, just go to citizen advice place, they'r the best peolpe to get yr case moving, am sure you wont have to loose yr dla and is, but pls go and c them, it will take bit of time for them but the sooner you start the bette. gd luck n pls keep us posted, if can be of any help pls feel free to contact, it's damn life living with FM but get all help you can from other areas.

 

Ellie

Hi Andy, have you been intouch with your local CAB or Wefare Rights they will be able to help you.  You can get a NHS Fibromyalgia information package from the hospital and try your local Expert Patient Programe to give you a better out look on life.

             Good luck   Purr
 

Hi Andyderby, As anyone who suffers from this, or similar, illness's can testify, no one will accept there is anything wrong with you.  I don't complain now, I don't go to the doctors, I just carry on working full time because the pain is much worse if I stay at home and rest.  My son said to me the other day "What is wrong with you now?" because I asked him to drive for me as my thumb joint has started paining me.  I dare not mention Fibro as my family all have the same reaction, they look away and offer me no help.  I don't feel sorry for myself anymore just depressed that if I ever reach the stage, like you when I cannot work and keep house and run about for my grown up family I will be miserable and alone.  I understand the pain is caused by the brain misreading the signals and for this reason I push myself to do everything I can.  I smoke as well so that gives people another excuse to condemn me.  Getting up in these freezing cold mornings is agony but I have no option and by the time I arrive at work (I work in a bakery) the first hour I moan and groan and after a while I don't notice it.  When I get home I collapse after cooking tea and I get moaned at because I won't go out at night.  I have just spent 2 days in bed because I develped the flu like symptons and now I am back on my feet and taking ibobrufen every few hours.  My advice to you is don't give up work, unless you have a desk job, keep your body moving and take painkillers until the pains are bearable.  Luckily my husband understands, he's the only person in my life who does and I love him for it.   Life is good, there are people dealing with much worse  don't give up please it will get much worse.  Beautross

Hi Marilyn,

I phoned you ages ago on the help line for FMAUK, at least I think it was you, I just want to thank you for the up beat way you spoke to me and made me feel that I wasn't alone!!!

I have since been to London and seen Dr Hussaini at the Cromwell who diagnosed me, I have to say he was one of the kindest doctors I have ever met, and one of the most helpful.

I have now got Rheumatoid Arthritis as well as ME and Fibro and so am in a pretty sorry state, however I try and keep positive and take each day as it comes.

Thanks again for your help and take care,

LindaH 

 

All you can do is stay possitive

I was diagnosed with SLE last year and can sympathises with you all

www.lupusawareness.co.uk

Hi all I have had fibomyalgia for about 7 years or so and they say there is no cure, and to be honest it is making my life so miserable.  I have chest and back pains and live on painkillers and it has apparently together with acid reflux, attacked the muscles in the voice-box so i have barely any voice.  I have had scopes and voice therapy but the throat is sore all the time so where does that leave us eh?  Is there any connection between lupus and fibo can anyone tell me please, just to put my mind at rest because the Dr's dont seem to know much about it - its one of those complaints that they dont know what it is!!! would appreciate anyone in a similar situation replying thanks.

Hi, I was diagnosed 4 years ago & also have severe irritable bowel as well.  If you have friends see as much of them as you can & even though it is painful try & keep doing as many normal things as you can even if it is only a small bit of housework or going for a walk.  I joined Curves fitness class & didn't think I would be able to to it.  It was causing me more pain to start but I persevered & I really felt a lot better within myself and the pain was less severe, it helped loosen my muscles & I had put on weight as a result of not being able to do so much & it toned me up.  It is important to know how far to push yourself though unfortunately I was doing so well at the exercise that I went too far & ended up with tendonitis in my legs for a while & could hardly walk.  I was feeling so much better I went to far but I still say it really helped me a lot.  I am nervous about starting again after the tendonitis that is the only reason I haven't gone back to it.  And I have put weight on again which is depressing me. Maybe swimming would be better but hurts my neck alot.  Dont know about lupus  but hope I may have been some help to you.  I had to leave work and my partner doesn't understand my problems & that doesn't help, he expects more of me than I'm able to do & it causes arguments, it doesn't matter how many times I explain it he just doesn't get it.  It gets you down I know but you have to try & be positive & keep going, what choice do we have, take care Tracy

hello everyone, sorry not been round but getting more and more diffficult to cope with pain, but just to let u all know that Jo Guest, she is FM suffere n was on show before , which i missed, is going to be on this morning again on Thursday 10th April to talk about how this illness has affected her life, i kow it's changed mine in more ways than one, so lets hope she be able to make more people aware of this silent life changing illness, which 12th May is the awareness day , hope as many of u b able to watch n c if it make people more aware.

 

Ellie

Hi ellie, just happened to come across the name Fibromyalgia,more by luck than judgement and couldnt believe it!Ihave been a sufferer of this condition for the past two years,and really in silence.I initionally saw jo guest on this morning programme and at the time thought she is suffering with the same symptoms as my-self.I thought at the time as she was seeing doctors they would find what was wrong,as i really felt for her!I was always an active person,just like her,and then my world fell apart.I have a family who have always been used to me doing everthing,working full-time running the house,doing everthing for everyone,with not amoments thought,but that was how i wanted it to be.Iwas a district nurse,and now most days i cant even get out of bed!Ihave also been diagnosed with ME,which can run along side Fibromyalgia,and i am very lucky to have a fantastic doctor, and consultant of whom i see regularly.It is a very dibilitating illness, and most people look at you to see a physical impairment,and can not understand when you try to explain your symptoms.Ihave a hospital appointment on thursday, so will miss the show,but i will try to get it recorded.

Hi all im new here and came across this topic whilst browsing, It has caught my attention because  after years of suffering i still have had no official diagnosis to my "ilness". But Fibromyalgia has been mentioned a few times along with M.E,  I have an appointment with a neurologist next week as my dr said to rule other things out but im not sure what this might involve or indeed or indeed find out. I would be greatful to hear from anyone else who has had to go down this road and could tell me whast to expect. many thanks

Hi  Re your query FM.Your doctor has done the right thing in ruling out a number of very similar conditions before moving onto FM.If you want more information on FM the official website is very useful and they cover  many aspects of this perplexing conditions. A diagnosis of FM can be quite scary at first  so if you need any particular information or feel down at all about it all, please contact on here.There will be a lot more information over the next month as it is International Awareness Day on 12th May and there should (hopefully!) be more exposure and information through television,radio and the press.I am in the process of sending out 200 posters for local help through our support group.As there is over 100 support groups in the UK they can be very helpful in providing help in the problems of everyday living with FM.I hope this has been helpful for you and hope all goes well at the hospital.

 Regards from Fibrofriend/Marilyn

  

Did anyone catch the name of that ''enery sugar'' mentionned by DR CHris as help for Fibromyalgi?