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Fibromyalgia

Jeanyb

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!

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Sam_Alumni

Hi @Jeanyb

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

Misscleo

Fraid its ALL down hill.
Mophine and codine take tha edge off but nothing stops the pain

Sam_Alumni

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:

medication – such as antidepressants and painkillers

talking therapies – such as cognitive behavioural therapy (CBT)and counselling

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:

treating fibromyalgia

self-help for fibromyalgia

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.

jamie1965

I have found it’s all down hill to my flare ups come more often now have been on loads of different pain and antidepressants tried the gym walks and the back and pain unit to help me manage the pain reduced my work hours but nothing seems to help it feels like someone has stolen my life from me I no longer go anywhere unless I have to have been on sick from work since December I struggle to get in and out of the car and no longer drive incase I start to get spasms which are in believably painful my poor partner of 33years is more like my carer I feel so guilty his life has stopped as well always worrying about me I get tears just thinking about what this is doing to him

Pippa_Alumni

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

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

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

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

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

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

@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

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

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_Alumni

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?

deb74

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

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

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_Alumni

Hi @deb74, that sounds lovely! I always love getting things from Etsy!

I hope your pain isn't too high.

deb74

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_Alumni

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!