Fibromyalgia — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Fibromyalgia

Jeanyb
Jeanyb Member Posts: 4 Listener
Im just wondering how fellow Fibro sufferers find their symptoms progress. Has anyone found they have improved at all? Or is it just a steady decline. I’m trying to improve my mobility but it seems to be a loosing battle. I can’t walk far, if I push myself to walk farther I just end up in so much pain!
«13

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Jeanyb

    Welcome to the community, there is a good post here by @Jojo1977 about fibromyalgia you might like to read.

    Scope
    Senior online community officer
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Fraid its ALL down hill.
    Mophine and codine take tha edge off but nothing stops the pain 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger

    Some information about fibromyalgia on the NHS website:

    Although there's currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.
    Treatment tends to be a combination of:
    • lifestyle changes – such as exercise programmes and relaxation techniques
    Exercise in particular has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.
    Read more about: Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia. If you have any questions about fibromyalgia, call the charity's helpline on 0300 999 3333.
    The charity also has a network of local support groups you may find helpful and a online community, where you can find out about news, events and ongoing research into the condition.
    Another support group you may find useful is UK Fibromyalgia.


    Scope
    Senior online community officer
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    I'm so sorry to hear about your pain, @jamie1965. It's clear that you care about your parter a lot- you might like to have a look at Carers UK and the work they do to see if they could offer any support to them.
  • jamie1965
    jamie1965 Member Posts: 85 Courageous
    I will have a look thank you it’s very hard it feels like we on our own to cope but reading some of the issues others are having with illness and benefits makes you see that not enough is being done to help what is the point of all the talk from government agencies when it is left to charities to do give help that they meant to give it breaks my heart hearing what others are going thru 
  • jamie1965
    jamie1965 Member Posts: 85 Courageous
    Have found a web site for sufferers and family for fibromyalgia it is www.fmauk.org there is pack in there to give more info on the condition you can down load it on this link 
    http://www.fmauk.org/dmdocuments/Medical%20Pack.pdf
  • Jeanyb
    Jeanyb Member Posts: 4 Listener
    I’m not sure if people are aware of this group http://letsgetfibrointoparliament.simplesite.com/433644242
    who are trying to get Fibromyalgia recognised as a disability in the England. They are collecting signatures and recently had a meeting with an MP.
    They also have a FB page for those on FB


  • Jeanyb
    Jeanyb Member Posts: 4 Listener
    Thanks for the comments and links, I’ll have a read.
    @jamie1965 I’m sorry to hear about your situation. I know what you mean when you talk about your husband becoming your carer and the guilt that goes along with that! 
    I had to give up working 3 years ago, I just don’t have the energy. It’s difficult to get out of bed in the morning so I couldn’t make it to work. I have problems finding the right words when talking and working on the telephone made it impossible to carry on. Brain fog was bad at the time too, an awful symptom to work with. 
    Im seeing a Physio at the moment and she seems to think she can improve my mobility, I’m sceptical but I’ll give it a go. I’m going to try swimming but I just find it so tiring getting undressed and dressed again!
    I don’t take many painkillers though I’ve taken paracetamol and ibuprofen this morning for my arthritis pain.
    Onwards and (hopefully) upwards.
  • jamie1965
    jamie1965 Member Posts: 85 Courageous
    I had all the physical theapy went on for mo th and CBT as well it helped at the begging but as this has progressed no longer any help I still do the stretches but most days can not complete pain and stiffness to much so then have to take my pain meds and need to sleep again funny thing is cannot sleep at night no matter what meds I take up every other hour wake up with pain go to sleep with pain I to worked on the phones and my issues where getting into work and once there trying to stay focused I asked for training for work away from the phone which reluctantly they had to provide I asked if o can have a laptop as this is a reasonable adjustment to work from home but they fighting me on this if I had accepted there offer to become a manager then it would not be a problem but because I did not the it seems to be an issue I told them I hope this never happens to you cause if it does you won’t cope. I had one of the section managers make a comment when she thought no one was listening that it is all in my mind that doctors give pain meds just to get rid of you I was fuming if this is what they think what kind of culture are they making for any disabled person to work in 
  • Jeanyb
    Jeanyb Member Posts: 4 Listener
    @jamie1965 I don’t think anyone knows what it’s like unless they go through it. Managers can be ruthless, I guess they’re just doing their job but they don’t have to be so cruel. Those “reasonable adjustments” had been made for me at work too. I did eventually get to work at home, so much easier, but then that became a struggle, I was in so much pain.
    i try to stay away from the Drs now because whatever I go about they just say it’s the fibromyalgia! 
  • jamie1965
    jamie1965 Member Posts: 85 Courageous
    Dido I fell down the stairs and gave my self concussion I was sent to the hospital from work cause doctor said it just part of my condition when I tried to expalin the weakness on my left hand side and the when I fell could not grip the railing the hospital said it is nothing to do with your fibro you have narrowing I. Your spine and neck now have to look forward to an opp while still fighting these jokers at work for a laptop 
  • deb74
    deb74 Member Posts: 777 Pioneering
    i have had ME for about 5 years but have only just got a diagnosis and my doctor also diagnosed me with fibromyalgia. I can't believe how much the fibromyalgia had affected my life. The lack of sleep the pain and I am always completely exhausted. Fortunately I work for myself but I am having trouble getting myself motivated to do anything at the moment as I am just so tired!




  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @deb74, I imagine it was a shock to receive the diagnosis. How are you doing? I can understand why it'd be hard to be motivated with limited energy, what's your job?
    Scope

  • deb74
    deb74 Member Posts: 777 Pioneering
    Hi Chloe_Scope. I am in a bit of  pain at the moment but I am ok! I have used to have a gift shop but I closed that due to lack of trade. I am a craftworker and now sell my work in a local craft shop on a commission basis. I also do craft fairs and markets. I have also setting up a shop on Etsy. 
  • Tobias
    Tobias Posts: 46 Courageous
    Jeanyb said:
    Im just wondering how fellow Fibro sufferers find their symptoms progress. Has anyone found they have improved at all? Or is it just a steady decline. I’m trying to improve my mobility but it seems to be a loosing battle. I can’t walk far, if I push myself to walk farther I just end up in so much pain!
    Decline!
  • Tobias
    Tobias Posts: 46 Courageous
    jamie1965 said:
    Have found a web site for sufferers and family for fibromyalgia it is www.fmauk.org there is pack in there to give more info on the condition you can down load it on this link 
    http://www.fmauk.org/dmdocuments/Medical%20Pack.pdf
    Have you ever been offered to go to St Thomas' pain clinic in London? its over the road from the London eye..
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @deb74, that sounds lovely! I always love getting things from Etsy!

    I hope your pain isn't too high. :)
    Scope

  • deb74
    deb74 Member Posts: 777 Pioneering
    Hi Chloe_Scope. Pain isn't too bad today. I bought some hemp balm yesterday (didn't fancy using the oil) going to start using it soon. Hope it works. Started Etsy page but only got a name so far. I need to make more stock before I start putting things on there.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    I'm glad the pain isn't too bad today @deb74! I hope the hemp balm is helpful for you. It sounds like you're making steady progress with your etsy shop which is amazing!
    Scope

Brightness

Complete our feedback form and tell us how we can make the community better.