Does anyone have Fibromyalgia?

holly_83
holly_83 Member Posts: 31
edited 21. Aug 2010, 09:38 in Say Hello Archive
Hello,
I'm Holly, 27 yrs old, I have Fibromyalgia, a four year old son, Oliver and I'm a lone parent.
I have only recently been diagnosed after 14 months of me thinking I was losing my mind!
I would like to chat with fellow sufferers and Exchange notes. My doctors have not given me very much information bar one leaflet!
So, come and chat x

Comments

  • trisher
    trisher Member Posts: 9,727
    edited 30. Nov -1, 00:00
    Hi Holly

    A warm welcome to the Forums. The people on here are very nice. We all try to support one another in many ways. Sorry I cannot help you i have RA/OA also PsA

    There are people on here who do suffer with Fibromyalgia. You are not loosing your mind it is very real but do understand how you might feel this way.

    Now you are a member if you post on the LWA Forum you will get more replies from people.

    There is a very helpful Helpline on here you can ask them and they may be able to point you in the right direction.

    There is also the CChat Forum where some of us go to have some relief from arthur as we call him. You can always pop in the cafe there and have a cuppa talk to the girls.

    Or you can start a Thread of your own about anything that you might like other peoples view.

    Well, I hope you will be as happy as I have been since joining also hope to see you posting soon.

    Love Trish xxx
  • bubbles
    bubbles Member Posts: 6,508
    edited 30. Nov -1, 00:00
    Welcome to the forum Holly, I too have Fibromyalgia, confirmed by the rheumatologist and GP. Don't worry hun, you are not alone, there are lots of people with this condition who will help and share thoughts, problems and helpful ideas with you. As trish says, post on the LWA forum and more people will see you.
    Take care, XXX Bubbles
    XX Aidan (still known as Bubbles).
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hello,
    Thank you for your help, I think I have finally posted in the correct place!!
    I'm new to all this forum business and it takes a while to sink in!
    x
  • frogmorton
    frogmorton Member Posts: 26,763
    edited 30. Nov -1, 00:00
    Hi Holly

    I ahev met you already on the LWA forum :)

    It IS good to have you on board.

    Have you downloaded the arthritiscare laeflet?? I did for my ex MIL and she cried it was so spot on for her and made her feel vindicated too.

    She had felt people thought she was 'making it up' too :(

    Love

    Toni xx
    Love

    Toni xxx
  • trisher
    trisher Member Posts: 9,727
    edited 30. Nov -1, 00:00
    holly_83 wrote:
    Hello,
    Thank you for your help, I think I have finally posted in the correct place!!
    I'm new to all this forum business and it takes a while to sink in!
    x

    Holly

    When all of us joined we were in the same position but we did ask and now we are fine, you will be too in no time at all.

    Love Trish xxx
  • barbara12
    barbara12 Member Posts: 21,107
    edited 30. Nov -1, 00:00
    Hi Holly
    A very warm welcome from me, the people on here are so supportive and friendly, you wont want to leave.
    Love
    Barbara xx
    Love
    Barbara
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hello all,

    I have brought a book called 'The Fibromyalgia Relief Handbook', It is now written by a doctor but by a man called Chet Cunningham and he is interested in this condition.
    I have found the book VERY useful and it has made me question alot of things, such as, could our doctors do more than they currently are??
    There is a piece in the book about Guaifenesin - it says that this product is found in Cough Medicine - in 1928 it was used for 'Growing Pains' and other symptoms that we now know as Fibromyalgia. A doctor believes that the cause of Fibromyalgia is a defective kidney, in that it works apart from ONE basic ability. It simply cannot expel all the accumulated waste in the bloodstream. He believes that teh problem here is Inorganic Phosphate. Usually there is a control in the kidney that can in effect open a faucet and let out the excess waste product. Those with Fibromyalgia don't have this 'Open Faucet' to get rid of the products.
    Basically all this waste is recirculated in the blood. He believes that a defective enzyme is responsible for this problem. So we cannot expel enough of it and some of the phosphates are absorbed into the body tissues because they have no place else to go. This absorption is what causes the muscle pain.
    So, the theory is that Guaifenesin helps the enzymes in the kidneys to open those spigots and pump out the offending inorganic phosphates that are the damage in the bones and fibres of the body.
    How it works is initially the sufferer will at first have WORSE symptoms for about 3 weeks whilst the body expels all the bad stuff. It says you also need to block out Salicylates as they can block the effectiveness of Guaifenesin. Salicylates can be found in anything from Alka Seltzer to Asprin and also found in make-up and other beauty products.
    I hope I haven't broken any rules by quoting this - I just feel that it COULD be a vital piece of information.

    What as your views on it? Do you know anyone that has tried this?

    Basically the amount of pain I am in at the moment I would give anything a go. I hate being in this much pain as I cannot properly look after my 4yr old son, Oliver. I am a lone parent too which doesnt help! I have made it my mission to try and sort out this terrible condition and get back to living my life!
    Thank you for your time in reading this.
    Holly x :cry:
  • frogmorton
    frogmorton Member Posts: 26,763
    edited 30. Nov -1, 00:00
    Hi Holly

    Think you are allowed to quote a certain amount and hope you haven't quoted too much. Think if you had they'd have whipped it off by now!

    I heard about the negative effects of those sweeteners before but didnt realise it connected with fibro. Is it possible to do a blood test then to test for these phosphates?? To help diagnose the fibro??

    Did you have time to read the A/C leaflet yet?

    Love

    Toni xx
    Love

    Toni xxx
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hi Toni,
    Yes I did read that leaflet, thank you.
    Very useful information in there and alot of questions got answered.
    I am currently researching clinical trials and I have found some suprising views.
    I have discovered an Ultrasound treatment that kick starts your cells, but it is VERY expensive!! It's £300 for 6 treatments over 3 weeks, then £20 a session every fortnight.
    It is very expensive, although some people say it does work there are no guarentees.
    I am in a catch 22 situation, as if I do start the treatment and if it DOES work, then I cannot afford to keep it up, then I will be worse off, both financially and medically.
    Any advice appreciated xx
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hi Toni,

    I stumbled apon a clinical trial last night that spoke about a specific blood test to test Fibromyalgia. I will did it out latey and post my findings.
    I'm off for more bloods today - finally got my doc to test my Vitamin B12 levels as it HAS been proven that lack of Vitamin B12 interupts the sleep pattern. So, I thought it was worth bugging them to test me for it. Have had to fast for this blood test and considering I am feeling faint and dizzy most of the time it really hasn't been a good idea. Will deffinately be a bus to the hospital today.
    x
  • frogmorton
    frogmorton Member Posts: 26,763
    edited 30. Nov -1, 00:00
    Hi Holly

    Hope the blood test goes ok and that you eat something quickly once the bloods are done :?

    I hate that kind of test - they knock me sick :(

    A blood test for fibro??? When you suss it do let me know - my MIL would be very interested.

    Love

    Toni xx
    Love

    Toni xxx
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Here is some more info

    In America three medications have been licensed for the treatment of fibromyalgia, Cymbalta, Savella (milnacipran) and Lyrica all received licenses for fibromyalgia but they have not been granted the same status in the UK.

    Cymbalta and Lyrica in the UK have licenses for neuropathic pain (and Cymbalta for depression). Savella is not licensed in the UK. Not receiving a UK a license for these drugs does not mean that a British GP is unable to prescribe them, but it is "off-license" so if anything serious was to go wrong in terms of drug reactions etc. the GP would have to carefully justify his/her actions.

    This is a very useful site http://www.ukfibromyalgia.com/treatments/medication.html

    Also there are FOUR dedicated Fibro Clinics in the uk

    NHS Fibro-specific clinics & services:

    Guy's Hospital, London
    Run by Prof John Davies.

    Poole Hospital
    Run by Dr Selwyn Richards

    Salisbury Hospital
    Run by Dr Richard Smith. Physio, OT & hydrotherapy available in department.

    Bolton Hospital
    Run by Dr K Adams. Multi-disciplinary course available for Fibro sufferers.

    Blood tests went ok, but I am shattered now and looking forward to bedtime.
    Although now I am hooked on this research and I am determined to find the answer x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Holly and a belated "hello and welcome" from me too. I don't know about Fibromyalgia (I have RA) but I can see that you have already had some good info from the lovely people on this forum.
    Love Tilly x
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hello all
    Just came back from rheumatologist and been told I have Spondyloarthropathy too!! Anyone got any advice??

    Hope you are all ok x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Try posting your query on LWA forum - that's where most people look to check/answer posts. I don't have it and I can't help. Sorry! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hi All,

    Did you all have a good weekend?

    I am in SO much pain today!!! Going back to docs as steroid injection obviously not gonna do anything!
    All the pain is in my left hip and I can barely bend over. Feeling utterly miserable :(
    To top it off builders starting work on my Bathroom today!

    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I feel sorry for you, you have a lot to handle and you seem to cope very well. I really do nthink you would be better posting on the Living With Arthritis forum as that is where everyone goes to find out tips and hints. People do forget this forum exists, so please out some stuff on LWA - you will get more replies there. I still cannot help in anyway 'cos I don't got what you got! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Thanks DreamDaisy,

    I have posted on there too.

    I'm just very frustrated by the whole thing.

    I hope you are well x
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    Hi all,

    I've just got back after a night in hospital.
    Basically Tuesday morning I had severe back pain, nothing like I've ever felt before. Saw consultant on Wednesday morning and she said I've prob got a perforated disc and needed to be admitted.
    So, Thursday, hospital had a bed. Stayed in and Friday had an MRI scan. There was no sign of infection on the spine, which they were concerned about.
    So, now.... The back surgeons are looking at MRI to see if surgery is needed. Obviously I'm hoping not but if it has to be done then it does!

    I hope everyone else has had a better week xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oh poor you - the last thing you needed. I hope you are feeling OK now. Whe do you hope to get the MRI results? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • holly_83
    holly_83 Member Posts: 31
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Oh poor you - the last thing you needed. I hope you are feeling OK now. Whe do you hope to get the MRI results? DD

    Hi Dreamdaisy,
    Hoping to get scan results early next wk. Just had a bath and now hurting after struggling to get out! X