1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

Fibromyalgia driving me crazy

Posted , 6 users are following.

mavis75447
mavis75447

Hello all! I was diagnosed with Fibromyalgia on Tuesday and believe me having a name is satisfying because I was really thinking I needed to be committed somewhere... Memory loss and fybro fog oh Lord it's crazy and exhaustion my husband thought I was lazy (I know he did). Thought I had some obsession with my bed... But to be honest I am his carer and after to seeing to him I had to rest straight away I am really bad after any task... I fully run our home on my own have done since day one and he was medically retired in 2009 and fully depends on me... But I struggle with my health and have other health issues.. But this finally rheumatology put a name to it they are still looking for lupus because some of my blood tests were questionable but they have discharged me to the gp to control the Fibromyalgia..

I need to know what I should do.? Can I get financial help if I stop caring for my husband and get him a home help carer.. I really can't cope with him and this plus everything else..

Just a advice and I will be grateful..

0 likes, 16 replies

16 Replies

  • yvonne2909
    yvonne2909 mavis75447

    Posted

    Go to citizens advice bureau and explain your circumstances. Take with you any financial paperwork you have. They are great at filling in forms and giving you up to date advice. Hope this helps. Y x
    • mavis75447
      mavis75447 yvonne2909

      Posted

      Ok thank you I will do that.. They probably will advise me on a how to get a care plan set up for my husband too...
  • pollmadoll64
    pollmadoll64 mavis75447

    Posted

    Once you have a Fibromyalgia diagnosis you can apply for both ESA and PIPS . Try and gather up as much medical evidence about you and your husband as possible and describe clearly how both your conditions affect you daily. Good luck . I have had Fibromyalgia for over ten years and have two young sons to look after , alone  and it is really tough but I just go from day to day and try to rest as much as possible. Due to shoulder surgery I am off work at the moment. 
    • mavis75447
      mavis75447 pollmadoll64

      Posted

      Thanks and I will take your advice hard wrapping your head around it...Really frightens me because a friend of my husband ended up in a wheelchair.. Hoping that is not common... But i will get started because my head forgets everything even my boys name... I live via notepads..

  • ihavenonickname
    ihavenonickname mavis75447

    Posted

    Hi Mavis,

    So sorry...what country are you in?

    If USA, what state?

    • ihavenonickname
      ihavenonickname mavis75447

      Posted

      I sure hope you find assistance.

      I am in the USA and know nothing about the UK system

      I know it is difficult

      hugs

      judith

    • mavis75447
      mavis75447 ihavenonickname

      Posted

      Thanks I wish you well to and I am know I am going to be really low some days like us all.. I am going to do my best by not letting it beat me up inside.. One day at time is my pace and my focus is my 5 year old grand-daughter whom now has decided to call me Granma instead of nan lol. Because I am slower. 😄😆😊

    • ihavenonickname
      ihavenonickname mavis75447

      Posted

      What a wonderful way you think...your granddaughter is blessed to be able to learn from her wise Granma...I called my grandmother, grammy...

      hugs

      judith

  • tbay
    tbay mavis75447

    Posted

    Hi Mavis.

    Hope you get better. I'm.going through same thing as you and myour doctor has suggested it's Fibromyagia but still investigating to check it's not another Rheumatological issue.

    I'm currently on amiprityline to see how it goes.

    Finding it difficult to type and write me work report now. My arms are always in pain. Also affecting my driving too. All this now taking toll on my work life.

    Would like to know what to do and how to manage life with this pains.

    • mavis75447
      mavis75447 tbay

      Posted

      Hi Tbay

      I am on Naproxen and co-cocodamal because of other health issues osteoarthritis for 1. But I have no idea what meds I will be in the end. Like you I struggle with everything but the worst part is waking up every hour or two each night. I am so exhausted it's terrible... 😥😖😴

    • mavis75447
      mavis75447

      Posted

      I should of said too that my rheumatologist is doing a second batch of blood tests to confirm or rule out other conditions.. Hope we all get sorted and find some sort resolution to this condition..

  • mavis75447
    mavis75447

    Posted

    Everybody! Ok had my letter finally from rheumatology and I don't know what to say but I will share what He said.

    I was pleased to see Mai (my full name) in Rheumatology clinic today who still noticing Myalgia and Arthralgia with poor sleep and she is not refreshed in the morning. She had 18/18 tender points of Fibromyalgia for which I gave her the ARUK leaflet on Fibromyalgia and discussed the significance of graded exercise, sleep hygiene, and pacing technique. Could you kindly commence Amitripline 25mg increasing gradually to 75mg nocte.

    if she cannot tolerate Amitripline then the other option is Duloxetine,Gabapentin, or Pregablin. If all fail then you may refer her to Pain management programme. Her Inflammatory markers have risen it is not clear to me why they have been high since 2011 but it is not any rheumatological cause for this. He also states I will get physiotherapy for my arms.... So at last I can get some medication just got to get a appointment first... If my gps are doing there jobs they should approach me now.. As I have had two gp appointments and been to wait for rheumatologists confirmation.... So I am mentally relieved but I am still fighting this virus which has set off a asthma flare up... Upwards and onwards has my son says with a huge hug... I love my boys and I am very blessed they love and care for me.. My eldest is putting all the xmas trimmings up for us tomorrow so sweet.. I need to get a little better I have so much shopping to do. So much behind for christmas.. Got a get move or get me a secret santa.... Any input on the dr's info I will be grateful , I'm thinking it all clearly stated. I so gotta google some info naughty me but I'm not as clever as before.....

  • ihavenonickname
    ihavenonickname mavis75447

    Posted

    Lyrica is pregabalin

    Neurotin is gabapentin

    amitriptyline is fairly standard for fibromyalgia...just watch that you urinate regularly.

    Duloxitine is Cymbalta

    Cymbalta is the only one I have not taken. For me, Lyrica is best.

    Merry Christmas

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.