Can anyone give me some advice?

[lindamorgan]

I have been suffering quite a lot these last few weeks the fibro has been driving me mad, i am so tired and in pain everyday, gp gave me some new meds, they help a little, but as soon as they wear off its the same

I am struggling to get out of bed, it takes me at least half an hour to get myself up, i have started taking pain killers before i get up so that its not so bad. My skin feels sore all the time as well, does anyone else experience this feeling? I keep walking into things, dropping things, this morning i put the soap powder in the fabric softener compartment. i keep for getting things, Feel really irritable and depressed. I have been back to docs more often than i normally do, how often should i go and see him or should i just try and get on with it?

My walking has become so difficult, i don;t go out much now unless my son takes me out, i have thought about asking gp about a wheelchair, but i could not manage a manual one, i don't think he would agree anyway, he says not to give in to it. Somedays it is easier said than done, the fatigue is so bad that it is impossible to do anything. And in August i have the ESA review coming up. Should i ask my doc about a wheelchair? How often should i see him, do i ask him for a letter for the ESA later and will it cost me?

[ladymoth]

Hi Linda,

If you're not coping then you need to go along to your doctor with a written list of the problems you are having, and if possible get a consultant appointment - either neurology or rheumatology, wherever your GP can recommend a specialist who takes an interest in fibro. You can only 'get on with it' once you have the tools to do so!

Secondly, like all of us, you will need to develop coping strategies, and probably a pain management course would be the best way for you to do this, if your GP or consultant will refer you to one.

We all find our own methods - for instance, I make sure that I have a dose of pain medication first thing, then relax in bed for an hour or so to let it kick in before I get up, showered and dressed.

You need to take little rests between jobs, and at any time you feel yourself getting exhausted.

I make lists in a big desk diary, so that I keep on track with daily jobs, and I prioritise, so that important things get done, and less important things can be left if necessary.

These are just a few examples, but you will learn to manage your condition once you get the pain under control - that's the number one item on the list - after that it gets easier! Don't worry about your washing machine incident - we've all done it, and it's not so bad as spraying your underarms with hair mousse like I did !

As for the wheelchair, I think it's OK to use one if absolutely necessary, but try to keep mobile if you can. I take several short walks during the day - just ten minutes at a time, tho' some days I can do more. It's sometimes difficult, but I know I would be much worse if I didn't exercise.

Have a look at our website - click on the link below. There is lots of information and some helpful links for you to look at. This forum will help you, because we all understand how you feel, and we can have a good moan and a good laugh together.

fibroaction.org/

I'm sure that you will feel better once you start really managing this illness, so very good luck with your journey.

Love from Moffy x

[Hidden]

Excellent advice from moffy... Personally after having fibro for 23 years its quality of life we need so if you need a wheelchair for part of the day then go for it.. I have a mobility scooter which I never thought I would need in my 40s but it gets me out of the house...

Good luck

VG x

[peely]

i have an electric wheelchair i got my first one off ebay for 150 it was fab My latest one was via my consultant and free i agree with the excellent advice Moffy and VG gave . Im 43 have ms and fibro and im a proud person BUT ive got used to being a crock and i love the fact now that if im knackered i can use the chair its not a cure but a solution x

[Mdaisy]

Hello Linda Morgan,

FibroAction can provide you with the Benefits & Work guides for free which will help you understand DLA & has guidance to help fill in the forms. If you would like to email [e-mail] then I would be happy to send them to you.

The Benefits & Work site has changed many of the guides in line with the benefit changes regarding ESA. According to the Benefits & Work website there are three sets of circumstances with different guides for each individual circumstances whether it is a new claim, decision on or after 28th Jan or decision before 28th Jan.

Please state in the email which relates to your individual situation so we can send you the correct guides.

Here is a link to the Benefits & Work website

benefitsandwork.co.uk/

Hope this helps

Emma

[wall1409]

I use a mobility scooter as thats the only way I can manage walking outdoors with hubby and of course shopping. I also have an electric wheelchair which hubby bought cheap as I have to use trains now for work as I can no longer drive and mobility scooters arnt allowed on trains but wheelchairs are, I'm 51 this year and crippled, I cant remember a day free of pain and my mobility is terrible but I take my painkillers and carry on its all we can do but all depends on the individual as I have a frind who has FM but isnt as bad its like everything you get mild, moderate and chronic.

[Mark8]

Hi i just read what you said and you have just said how I would describe my self I do all the same as you and the next step is to get doc to send you to the pain clinic at your local hospital wen you are there thay will find the right painkillers that suit you and hopefully thay can help and there letters seem to back you up a bit more but yes get 1 from your doc as well and do a week or 2 diary of how fibo effects your life how stay strong just because you got this disease dose not mean life is over it just means you have to readjust and do what you can take care and best of luck x