Has anyone else with fibro got ME also, i have so i dont know whats worst the fibro pain or the Me exaustion?

[Hidden]

Hello Stanne

I have Fibro and CFS/ME too. I personally find the CFS/ME exhaustion worse than my pain with Fibro because it is relentless. I can't fight it. With my pain however bad it gets I can usually fight it and I still function, but when the fatigue/exhaustion catches up with me I literally cannot move sometimes.

Of course we are all different and we react to pain and exhaustion differently too. It's really a personal thing and also a case of how much pain we can endure and how we manage our fatigue levels.

I hope this helps and I am sure some of our members will post and tell you about their experiences and what is worse for them.

(((hug))) xxx

Libs

[Hidden in reply to Hidden]

Thank you for your quick reply,

I too find the ME more of a stuggle, as you rightly say the pain can be bearable with pain killers. Im currently on Gabapentin, Co-codamol and recently Amitriptylin so i can get through the day, but the ME is awfull. Its been hard to accept because i was such an athletic person..

From the age of 4 when my dad learnt me to swim, then age 10 i went swimming every day after school with my best friend, by age 13 i had my bronze, silver, gold badges. By 14 I had my 1 mile, 2mile, 3 mile swimming badges. I played in the school hockey team, swimming galas, cross country...

Even in my late 20's i was playing rounders in the park with my children and their friends for 5hrs at a time. I was diagnosed with fibro age 35 after a long period of stress when my son was taken ill and diagnosed with Chronic Ulcerative colitis and bowel decease, i was working and looking after my son, spending weeks on end in hospital with him.

It was a year later i began to feel pain all over, tierd... you know the symptoms. Now at 44, i struggle to get upstairs some days, Its heartbreaking. To think ive always been active & healthy. I came across this site and find a lot of comfort in reading about others like me, i'm not the only one suffering.

Thanks for your reply xx

[Hidden in reply to Hidden]

It's my pleasure Stanne. I was the same as you before Fibro, very energetic and sporty, always a bit hyper, never tired. Then wham! I still can't get used to being inactive and sedate, I wrestle with it all the time although I have fully accepted my Fibromyalgia now and have adapted. It's still a bit of a struggle in my head but I have to accept that my body can't keep up with the ideas in my head. Very unfair though isn't it.

It's a pleasure to have you here with us Stanne!

Best wishes and hugs. xx

Libs

[linlit]

yes i have cfs/me as well i find the exaustion and fatiigue unbarable as my husband says i sleep anytime anywhere and last yeae even fell asleep standing up that was really scary my gp was uslessand just shrugged her shoulders. i found a new gp surgery and they have a doctor who is a fibro./me speachalist he took me straight of amitriptline as he felt this makes me worse as i slowly came off amitriptline i upped gabapentin and luckly it stopped me falling asleep while standing but unfortunatly not when sitting or laying down

[Hidden in reply to linlit]

Hi, thats good to find a gp who understands fibro. My gp is pretty sympathetic, thats when i can get in to see her, otherwise i end up with one of the other 4 gp's who quite frankly cant be botherd and just prescribe more pain killers. Not always ideal when you have to work full time. I have got forms for DLA, but im in 2 minds to even bother, causing me the pain of writing for an eternity.... to fill out this form. If you can walk 20 yards, cook a hot meal then your r classed as being fit for work and not entitled to naff.... Ive read so many peoples blogs on here, it amazes me how many have been going through an ordeal of appeal after appeal... hell knows how im going to keep working when im in so much pain, so exausted, and feeling like mr soft with all the tabs i take. Im 44, anoth 20 years to work atleast. Ive changed jobs 5 times in the last 24 months, i just get so tierd but i cant even feed myself and keep my car on the rd with that amount, so i need to work full time, Thats a scarey thought.... £72.00 per week job seekers, what the hell are we suppose to do. We have to declare our illness, if not then the first time we are off sick they can sack you anyway for not declaring it. if we do declare it, who would in their right mind employ someone for full time work when we are prone to flareups....Its so depressing. Thank you for your reply xx

[Hidden]

Yes I have both. There are so many cross over symptoms I don't know which is which to be honest. I also have IBS and have found there has been a gradual build up of toxins in my system. Like you I can look back and see deterioration. Finding my toxic triggers has has a major effect on pain and exhaustion. I no longer need medication. The worst of it for me is sleep. I'm sure if I could find a way of sorting that out properly I'd be cured LOL

Of course I still get flair ups and energy crises. They don't seem to last as long. I'm very grateful to the Rosedale clinic in Reading for the treatment they give x

[goonernic]

I also have ME as well as Fibro. Find the fatigue the worst as I can't do anything. But pain is bad too most days (have Osteo Arthritis cervical and lumbar - had a spinal fusion last year and now waiting on MRI as consultant thinks more bulging dics!) But at least I can do something even if it's painful!

Got a brilliant GP as well as consultant so all in all could be alot worse!!

Take care. Hugs to you all xx

[Hidden in reply to goonernic]

Thanks for your reply goonermic,

I just find it a bit strange ive never actually been told, "oh you have ME" it was only after visiting my gp several times in floods of tears, she said to me last week "oh we can refer you to ME clinic!!! i was so upset at the time I just nodded and left with a blood card asking me to have bloods taken b4 she can refer. But as ive said b4, other than one gp the rest just seem to fob me off. Thank you for taking the time to reply. xx (((big hug back)))

[viking]

I has CFS/Me for 10 yrs and fibro for 6. I am not sure which is worse either, they are both bad. I have now developed tinnitus in my ears pains in them all time. my GP just keep giving me nasal sprays. I attended a ME clinic but I god fed up with the painful long journey and the week in bed. I was taught about pacing, but this did not work for me. My depression gets so bad. It all piles up on me. Fibro and ME gets blamed on my illnesses. You just hang in there. get as much help from others on line who have it also. I have complex issues also. You having in there its nice to know your not alone and there is help for us.

[Lucyw]

Hello all,

I've been suffering with fibro now for a couple of years and gone downhill so quickly.

I keep asking to go home early from work and wondering if I too have ME/CFS how do they diagnosis this. All I want to do is lay down and sleep but how do you know it's not the medication?

Also does anyone now feel the need for a wheelchair? Sometimes my legs feel like lead. I get DLA high mobility medium care after 2 appeals and 2 tribunals??

[Hidden]

Wow lucy, you are the first person thats said you get DLA!!! Good on you for being persistant. Did you do it yourself or did you have help from an outside agency? such a dial? I have the forms but i'm in 2 minds to go through the stress and upset of not being believed or listened to and then interegated, If i could just get something so i can work part time. I have left the last 4 jobs ive had due to not been able to remember things and exaustion, some days i struggle to remember my own name. I too have made excuse after excuse to go home from work early, or go in late, putting holidays in and working a 3 day week... But how long can i go on pulling the wool over my employers eyes!! I finished my last job 1 week ago. I got a sit down office job in telesales for a waste management company. Problem was it was in a porta cabin with no heating, no toilet or running water for 2 weeks due to the -5 tempretures weve recently had, The cold made me so ill, i was having to wear 3 layers of clothing and i was still cold, having to drive the 2 miles home to use the loo was the last straw. Ive made a claim for jobseekers but no way can i survive and keep my car on the rd with £71.00 per week. I cant go anywere without my car so i would become almost housebound, How recent was it you were awarded it? Recently they have thrown lots of people off DLA, thanks to our wonderful goverment. If its recent, then i will apply. If it was over a year ago then i dont hold much hope. You have to litterally be incapable of thinking for yourself to claim anything these days.

Thanks for the advice though, much appreciate everyone taking the time to read and reply. Thanks agin my fibro friends. (((xxxxx)))

x Shelley

[timj53]

I attended an expert patients course which is available free in Wales a few years ago.There were 12 people on the course with different long term health conditions. I was the only one with Fibro. However everyone had chronic fatigue which led me to believe that this is because your body is trying to fight the pain so much it brings on fatigue!

[goonernic]

I get DLA too Shelley. High rate mobility and middle rate care. Applied for it early 2007 just afer I fell ill - got turned down and asked for a reconsideration with the help of a person from a local organisation called Disability Lincs and got awarded it! You can apply with the help of an organisation called Benefits and Works. They do information sheets which detail how to answer every single question of the form. I think someone who's admin on here said that you can e-mail her and she'll forward you the sheets. I'm really sorry, but I can't remember her name. I'll try and trawl thru some posts I read recently and find her details and then I'll post back later. So don't worry help is out there.

Bye for now, Nikki xx

[Hidden in reply to goonernic]

XX

[goonernic]

Found out what you need to do (boy that was quick - amazed myself there actually!) If you e-mail the admin people at: [e-mail] and ask for the Benefits and Work info sheets on DLA, they can send them to you for free! You need to work through them question by question, and keep repeating yourself - yes it's a hard slog, but definately worth it in the end.

Good luck,

Love Nikki xx

[Hidden in reply to goonernic]

Thnks, your a star.

xxxxxx

shell

[Hidden in reply to goonernic]

You're quite right Nikki, thanks for this. Email us on [e-mail] and we can send you the info sheets from Benefits and Work for free. They contain lots of useful info on ESA and DLA, completing forms, assessments and appeals etc.

I hope you find them useful Stanne xxxx Thanks again Nikki xxxx

[Allpainedout]

I've not been diagnosed but when I read about c.f.s. & me I have all the symptoms. I think they all over lap It's good to know others are the same stops me thinking I'm going mad !!!