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!

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_Scope

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_Scope

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_Scope

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!

deb74

Hi Chloe_Scope. I am hoping to have the shop up and running by the end of next month.

Chloe_Scope

That's exciting! Please do let us know how you get on!

deb74

Chloe_scope Pain decided to come back today. Had to use my crutches for a while until I go going. Had horrible night last night. Still awake 2 hours after I went to bed (no surprise there) every time I rolled over I was in agony and my legs were really painful. it feels like someone is trying to pull my legs off every time I try and put one foot in front of the other. I have read loads of stuff saying that fibro is non progressive but have any of the people who wrote that stuff every lived with it. it is definatley progressing for me! Sorry for the moan. As for my craft work I am looking at buying a loom so I can make rugs. Already got a small loom but it is not big enough to make rugs. 

Chloe_Scope

You're not moaning at all @deb74! We are always here if you want to talk. I'm so sorry you had such a bad night, I imagine you are feeling very tired this morning! 

I hope you can have a relaxing day today, and maybe catch up on some sleep.

A loom sounds amazing! I have a friend who has one, and she is making a blanket with hers. You'll have to let us know how you find it.

Toffee

Hi all i to suffer bad big hugs to you all with this horrid condition 

Chloe_Scope

Good morning @Toffee! How are you feeling today?

deb74

The loom isn't a proper weaving loom it is a peg loom. They are easier to use and take up much less room. I live in a small cottage so wouldn't have room for a proper weaving loom but I will be weaving rugs with old sheets and bed covers that I have bought from charity shops. The one I have already got is ok to weave door mats and runners.If I feel better tomorrow I will have a go at weaving a door mat. 

Chloe_Scope

Ah! Yes, that's the same as my friends! She loves it!

I hope you are feeling up to it tomorrow, I'm sure it'll be great.

ricky1040

Hey. Well in my experience it's very very unpredictable. All you can do is try and make sure you are doing all the right things to limit your suffering and improve your quality of life. Try eat good take vitamins do whatever exercise u can reasonably cope with and enjoy the good times. I have gone through a real transformation since I stopped the heavy painkillers and started physio and healthier living. But it's not a dead set thing. Its trial and error. Am sure the medicines work for some. Good luck I hope u get some quality of life with it. You only live once after all.

Chloe_Scope

Some very good advice there @ricky1040, thank you.

I think it all can really be a balancing act, but it sounds like you have a strong foundation which will really help!

Toffee

Good afternoon chloe very very tired no engery at all how are you xx

Chloe_Scope

Good afternoon @Toffee! I'm struggling with energy today as well, luckily I'm feeling a bit better than I did this morning!

How do you occupy yourself when you have low energy levels?

deb74

Chloe_Scope. Feeling a bit wobbly this morning.woke up with a massive headache but it has gone now. Also feel a bit stiff but I am sure it will all wear off soon. I have just ordered my new loom and can't wait for it to arrive! Also I am expecting my soldering iron to arrive today so I will be spending the next couple of days playing with that until my loom arrives.

Adrian_Scope

Hope you feel a bit better for the rest of the day @deb74 and let us know how you get on with the soldering iron. Do you have any projects in mind for your new tool?

deb74

Hi Adrian-scope I feel a bit better now thanks.. I have several projects I want do I make wreaths using fabric rags but I am hoping to make some using a plastic mesh called deco mesh but it frays as soon as you cut it which is why I wanted the soldering iron so I can melt the ends of the mesh to stop it fraying. I also want to make jewellery with plastic from bottles but I will need to melt it to make the jewellery. I may also play at making wire sculptures. My imagination tends to run away with me sometimes!

deb74

A bit disappointed my soldering iron hasn't arrived, Hopefully it will be here tomorrow

Toffee

Hi chloe 
My bed always wins I can't keep awake I have to have a cap nap to recharge myself its awful.. I feel lazy but I can't help it x

Adrian_Scope

Sounds like you’ve got a lot planned @deb74. Make sure to share your creations with us when you’re finished. Hope it arrives today!

deb74

Hi  Adrian_Scope.I am really looking forward to using the soldering iron. I have just spoken to the person I have am getting the loom from and hopefully I will get that sometime next week. I will try to share some photos with you but I am not very atgood with things like that. 

Chloe_Scope

Morning @deb74, I hope you are feeling okay today.

It sounds like you've got some really interesting projects on the go! The wreaths sound really good.

Hi @Toffee, sometimes we all need that extra bit of rest! I hope you are feeling okay this morning.

deb74

Hi Chloe_Scope. Not feeling too bad now. woke up with banging head ache as usual but it has gone now. Feeling a bit wobbly and my wrists and fingers are aching but I am sure I will feel better later!

Chloe_Scope

I hope you do feel better later!

deb74

Thanks.I am sure I will. I am getting used to life with this disease know so I am not surprised by the things it throws at me it is beginning to be part of everyday life. I am thinking of starting to write a blog about living with fibro but I am not sure if it will be it will be worth it or if I will be wasting my time!

Chloe_Scope

It's understandable that it will take some time to get used to. I have found that writing a blog is a powerful outlet for myself. I'm sure it'd be great if you decided to start one!

deb74

 I Will give it a go! I
have found a website that shows you how to start a blog.  Postman has just been. My soldering iron stil hasn't arrived!

Adrian_Scope

A shame it hasn't arrived yet but hopefully won't be too much longer! If you need any help with uploading pictures to the community please let me know and I can try and put together a guide.

Chloe_Scope

Ah that's annoying @deb74! Looming today?

deb74

Hi Chloe_Scope. I need to get some more string before I start weaving again. I have been sorting out my blog. It was so easy to do. I have written my intro page and it should be up and running in the next couple of days.

Chloe_Scope

Ah I get you @deb74!

That's so exciting! What platform are you using? I used to be on Blogger, but now use WordPress. I hope you've enjoyed doing it.

deb74

hi Chloe_Scope. Not sure about the platform. I don't even know what a platform is but wordpress sounds familiar. 

deb74

Hi Adrian_Scope. Only just seen your message. Thanks. I will need help with uploading the photos. 

Chloe_Scope

Morning @deb74, the platform is the programme you are using to write your blog on.

How are you doing this morning?

Toffee

Gm all big hugs to all hope you all have a good day xx

deb74

Hi Chloe_Scope, I am still non the wiser I have done it through simplesites I don't really know anything about setting up websites. I am a bit of a technophobe. I don't feel too bad this morning I have got cramp in my hands and am stuggling to straighten my fingers and had a headache but that has gone now!

Chloe_Scope

That's okay @deb74, as long as you're enjoying it!!

I hope your hands ease soon.

deb74

Hi Chloe_Scope. I am sure they will be better later. I have just been and got some string to start weaving again. Been to the craft shop that sells my stuff and told her about the rugs and they don't have anyone making rugs so I will make a few up and sell them in there. just about to pay for the loom. I am really looking forward to using it. soldering iron still hasn't arrived. I am not very happy. I bought it over a week ago!

Chloe_Scope

That's great news about the rugs! I'm sure they'll be amazing.

I'm not surprised, fingers crossed that it arrives tomorrow before the bank holiday!

deb74

Hi chloe_Scope . My fingers are still a bit stiff but not too bad I am just setting up my loom to make a runner to take to the shop. I have just had an email about the loom I have ordered I should have it by the end of next week. 

Chloe_Scope

I hope they continue to ease this afternoon.

I bet that'll look so good!