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Fibromyalgia

Jojo1977Jojo1977 Posts: 2Member Listener
Hi, I don' know where to start. First i started with a bad back in October 2015, which ive ha for yrs but not as bad as it is then Last year I had a brain aurisum in July, which was a big shock for my family, then I got diagnosed with fibromyalgia which I get a of pain with no 2 days are the same,  I was just wanting to know is there anybody else who knows more about fibro and could give me any advice on tips to manage the pain and also as my partner nicely says I'm pleasantly plump is there any tips on weight loss as I've put some weight on as I can' do too much

Replies

  • mazgomazgo Posts: 10Member Listener
    hiya Jojo1977, i too have fibro along with a few other conditions which isnt unusual. have your joined the Fibromyalgia web page?? its very informative and has a really good forum where you can openly chat and have a proper moan without feeling guilty about it..lol..
    Also have you saut any local Fibromyalgia/CFS groups in your area which is another good way of receiving support and gaining new understanding friends.
    my other advise is to ask your Gp if he can refer you to a pain clinic as ive found even tho ive had fibro for many a year, i learnt more from the pain clinic on the easiest way for me to manage my conditions etc..
    hope you find the help you need babe. otherwise im here if u fancy a chat.. maz x
  • Jojo1977Jojo1977 Posts: 2Member Listener
    Hi mazgo, yes I'm on the website hun, I'm also waiting to here from physio as I'm under pain management. Thank you Maz xx
  • HenryHenry Posts: 66Member Courageous
    My ask  my gp to go to a pain management class.
    He told me  the medication that I take should manage  the pain.
    I take many  drugs. Lyrics.  Amitriptyline.   Dispel. Co-cod.
    Hot creame.  
    These  only  take the edge of the pain.

  • amarie11amarie11 Posts: 3Member Listener
    I have fibromyalgia, it can be really hard trying to explain the pain as the response is usually something like,you look fine to me, I go to my fibro group once a month and I helps me to feel part of life
  • HenryHenry Posts: 66Member Courageous
    Never judge  the book by its  cover. 
  • MisscleoMisscleo Posts: 607Member Pioneering
    Local fibro group?? Where do i look for the lical fibro group most people in the know pretend its made up.
    So where do you look for one please
  • HenryHenry Posts: 66Member Courageous
    I   do not  know.

  • MisscleoMisscleo Posts: 607Member Pioneering
    See someone says go to your local fibro club but thete arnt any so why keep goinh on about local clubs which dony exist 
  • mazgomazgo Posts: 10Member Listener

    Jojo1977 said:
    Hi mazgo, yes I'm on the website hun, I'm also waiting to here from physio as I'm under pain management. Thank you Maz xx

    jojo1977 babe where do you live???
  • amarie11amarie11 Posts: 3Member Listener
    I go to the fibro group in glasgow, I find it really good to talk to people with the same issues as myself,I also go to Glasgow disability alliance, they put on information and get together days. 
  • HenryHenry Posts: 66Member Courageous
    Ann Marie. Thank you.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Every town or city tends to have local groups, The larger the community the more groups available, not that there are ever a lot. Unfortunately there are so many possible groups that you may not have an appropriate one close by and may have to travel to reach one. My town has two such groups. One is for brain damage and the other for learning difficulties. Neither are appropriate for me. I have to travel 20 miles roughly to find a group that I do qualify for which is a general disability group run by a local charity.

    The best thing to do is to contact local charities, your GP and charities like MIND. One or all may have some ideas how you can find something suitable. You can always try a google search.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Every town or city tends to have local groups, The larger the community the more groups available, not that there are ever a lot. Unfortunately there are so many possible groups that you may not have an appropriate one close by and may have to travel to reach one. My town has two such groups. One is for brain damage and the other for learning difficulties. Neither are appropriate for me. I have to travel 20 miles roughly to find a group that I do qualify for which is a general disability group run by a local charity.

    The best thing to do is to contact local charities, your GP and charities like MIND. One or all may have some ideas how you can find something suitable. You can always try a google search.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • danniyelliedanniyellie Posts: 1Member Listener
    Hi guys. Do i got diagnosed just before Christmas after two years from having hg. Lifes been prettt crap since. Now on lyrica and cocodamol but have asthma and ibs and unknown liver issue so im limited yo lyrica or the drug that combines antidepressant and painkiller. Currently just feel so fed up. I thought getting s diagnosis would put end to most of this. I eork fulltime. Struggle to do so.. but cant afford not to! Also have a two yr old and feel like im usually too tired to be as involved as I'd like. Just need advise on how to manage my life plz x
  • HenryHenry Posts: 66Member Courageous
    Dannieyell.    I also  take the same drugs  for the same complaint's
    I   also  take Dispel   and amitriptyline.   I am also asmathic.

    If  u  are in a post  which  has a company  pension.      Go   for it.

    I  usually  need a good  afternoon sleep  most  days.
    I know  the difficult  position u r  in. 

  • jamie1965jamie1965 Posts: 85Member Courageous
    It took 2.5 years to diagnose mine then was put in contact with back and pain unit at the local hospital they gave 12 months help from learning how different areas of my body actually work so I could try manage my pain. The issue is your body becomes used to the stretching and the pain takes over again I have now been put on deluxitine combo pain med and antidepressants advised by hospital and dyhracodine and gama something or other I sometimes think you can hear me rattle with all the pills one thing I did find out was Ymca do free course of excersize they are trained to help people with health conditions such as fibromyalgia and Taylor it to your needs and you can go at your own pace with others that are in the same situation it might help finding the nearest to you just go on the web and look up free excersize class your doctor can also refer you to a class to also ask him to see a dietitian I’m waiting on appointment to go to one also hope this helps 
  • ThepirateThepirate Posts: 2Member Listener
    Hi all, I am waiting for a proper diagnosis.  Have appointment at Kings College in London in March .
    Have been signed off work since June last year . Living on PIP and ESA. This is all new to me. In constant pain.  Can't walk without a walking stick . I was so active a year ago, now I can't even go to work. I was prescribed Tramadol for the pain which also means I can't do my job as it's a banned medication where I work . And as they have random drug testing I would definitely loose my job. Still employed by them but ran out of SSP .
  • jamie1965jamie1965 Posts: 85Member Courageous
    You could ask the doctor for a different med I was on Tramadol and several other till they got me on the deluxitine it is for fibro and depression all in one it has helped more than other but any pain relief only takes away 20 to 40% of the pain to make it a bit more bareable but never does anything with flare ups unfortunately not a lot is known about fibromyalgia or how we have got it and work is hard I dropped my hours twice so I could remain in work and it is a game trying to find med to cope and then once you settled with meds your body becomes used to it and the search starts all over again as I have said took 2.5 years to know what was wrong with me and have known. Ow for 2 years but I would love to say it gets easier but in reality it don’t it’s just we get used to it and know what to expect my problem is when I have other health issues I think it is part of the fibro I recently fell and found throu mri I have narrowing of the spine and need opp the locum doctor I saw said it find just your fibro but then started to be sick and was sent to hospital who said I had concussion did a ct scan them mri good job I had concussed myself
  • timoglocktimoglock Posts: 27Member Courageous
    Hi, I did have fibromyalgia for a few years and used to take strong nerve meds. However they only gave me 20% relief of nerve pain and had lots of side effects. In the end I had myofascial massage regularly and acupuncture.  I was desperate and it was challenging but it worked. This was my experience and maybe not for everyone.
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