Fibro struggle

[kellums88]

Hey everyone

I am having one of those days when everyone thinks im been over dramatic about my fibro pain and my CFS fatigue, I can't think straight and no one seem to get how frustrating it is, to be so tired and feel like iv had my former life taken from me.

I was a very active person playing sports and cycling everywhere, now I'm knackered after a walk to shops.

Does anyone else find it hard to explain to family and friends and feel like they just don't get it.

Sorry for the moan x

[merlin1967]

it took me years to get my family to accept i was ill i asked my husband to come to my hospital appointments so he could here the Dr talk any appointments i took him with me people treat you like a hypochondriac ive got fibro me and rheumatoid the pain is unbearable im on morphine even then i have to top it up with other pain relief i totally understand how you feel i had a good job a life now im a hermit i go out when im well enough which could change on a morning i might feel ok then a few hours later i could be back in bed no energy racked with pain sweating hot and cold sleeping for hours and still being shattered i have to do things in small ways slow then rest i can be bed bound for weeks and end up in hospital so don't worry about nothing don't tell them your feeling ill because all you get is negative comments just get on with what you can do and rest i hope this helps you angela

[Mdaisy in reply to merlin1967]

Hello Merlin1967,

Welcome to AFMCG I wanted to say I have totally been there with GP's making a judgement of me before diagnosis and it makes you wonder whether you are imagining it doesn't it? Well it did me?! After being given strong pain relief and the GP saying 'you cannot still be in pain' but I was I did wonder what was going on! But then when I read on FibroAction that we have reduced Opioid receptors than healthy people so Opioids are likely to be ineffective it all made sense!

I only take Tramadol as this has been reported to the only real main opioid that can help as it has a serotonin pathway involved in how it works. As we are reported to be low in Neurotransmitters like Serotonin among others this is considered why Tramadol is effective.

Hope you are having a good day today

Best Wishes

Emma

AFMCG Founder

[poppyann1]

Hi kellums 88 I to get very frustrated as some days I get to the point were I ask my husband to carry me to bed. And the worse thing is my husbands osteopath told him that fibromyalga is made up thing because they don't know what is wrong. My symptoms are getting so bad and on more and more medication , But wonder if my husband actually believes in it.

[Mdaisy in reply to poppyann1]

Hello Poppyann1,

Welcome to AFMCG I wondered would it help if you provided information factsheets from UK Fibro charities to try to encourage further understanding. You may also like to use The Spoon Theory found here> butyoudontlooksick.com/arti...

If you haven't seen this site before this may help. It is difficult and I understand living with Fibro too. There is also a letter called 'A letter to the healthy world from the land of Chronic Pain & Fatigue' you may want to Google too.

Hope his helps

Emma

AFMCG Founder

[Mdaisy]

Hello kellem88,

Welcome to AFMCG Thank You for your post

I totally understand and it can be difficult to explain Fibro and/or ME to people around us. If you check out my reply to Poppyann1 there are some links which may be helpful.

You can always come here and post & please do not owrry if you think you are moaning. The community is there so members can support each other through these times and this it how it benefits each other

Hope you are having as pain free day as possible

Best Wishes

Emma

AFMCG Founder

[0224]

Hi, I have Fibromyalgia and CFS as well as other things. I just had a big back surgery 8 weeks ago and have been so utterly tired I will fall asleep standing up. I was told by my surgeon that the Fibromyalgia would get flaired up badly from my surgery. I bleed out a lot during the surgery so got very anemic thought that was why j was extra tired, well I'm no longer anemic so it all the CFS and my family just doesn't understand why I sleep so much, I have asked my husband for years now to read about it so he will understand what it does to me but he won't. I don't know what to do . I hate being called lazy when I am not, I try to do things and an still on resticktions from my surgery but am scared that the surgery made my fibromyalgia so much worse and that it will stay this way !

[jules12]

hi, are you talking about me??? my family are very attentive when others are around, then when we're in the house, they all sit around, waiting for me to make them a cup of tea, cook dinner, clean the house etc; i feel like screaming, or crying at least. im so tired, day in and day out. the comments i get are, 'well im tired too you know, youre not the only one' or 'whats wrong with you?' and even worse, just sit there looking at me with 'that look', you know the one that says, 'youre putting it on or it can't be that bad surely?'.

i cant tell you how upset i feel. i too used to be very athletic, worked as a midwife on one of the busiest delivery suites in the uk and was the head of the house hold. i cooked, cleaned, gardened, arranged all our family holidays, took the children to all their out of school activities plus endless parties etc; played tennis, cycled. now i cant even open the top on a bottle of squash some days. Today, i have slept from 11am to 6pm. i slept all last night and will sleep all tonight too. I ache all over, sweat profusely, i can't walk properly when i get out of my chair. i feel like a 90 year old.

I have to say though, i have noticed a similarity with lots of sufferers which is most of us were previously very active.

i bet you can identify with much of what ive written.

[dawn1975 in reply to jules12]

My god you have said it all jules12, i have just been diagnosed with this stupit illness today but been in pain, had extreme tiredness, headaches everyday, ibs ect ect for years, think my family think the same its horrible some say i'm a hypochondriac which really upsets me and i loss my temper cos i can't prove to them that everything i am going through is real, i understand they can't see my pain or tiredness, i've just said to the consultant today i feel like a old women, i used to also be very active and have started putting on weight which i can't get off know cos i can't run or do the gym, i hate hate hate this horrible thing x

[kellums88]

Thank you everyone , it's great to hear I am not the only one feels this way and all your comment make me feel, like my feelings are not wrong so thank you xxx