First blog on this site.: Hi. I was... - Fibromyalgia Acti...

Fibromyalgia Action UK

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First blog on this site.

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12 years ago•11 Replies

Hi. I was diagnosed 12 months ago with fibromyalgia and m.e. Think I've had it for about 3 years before diagnosed, and I'm sure it gets worse every year. I've got 2 children ( 4 years and 16 months) and it really stepped up a gear just before I fell pregnant with my second ( horrendous painful pregnancy and birth compared to my first) GP won't try me on anti epileptics, so on co codamols and going to try amitryptiline and also quitting smoking next week! Having a bad flare up at the moment, last year it was around the same time and lasted 5 months, with mini flares inbetween, it never goes just waxes and wanes I guess. No one I'm my family or friends understand what I go through, ( I look fine!! ) my partner is ubderstanding as he has osteo so can relate to the pain, but not the fatigue, memory problens, skin sensitivity etc but he really tries and forgets he asks to much of me sonetimes. Bless him. We don't work due to our illnesses ( I also have a slipped disc and kyphosis) so we pull together and help each other out with everything which is nice. Last week I managed to get to tescos to do a bit of shopping, got a few aisles round and had to sit down, lost the little energy I had to get there and was in agony. Well, you should of seen the looks I got and actually got called a drunk! People can be so cruel, wish there was more understanding out there! I just don't get why fibro has this controversy with it, its the worst thing I have experienced, my gp said it won't kill you, but you will wish you were dead some days! Why do some people just think its untrue! Well, thanks for reading my rant, usually positive about things, but people thinking I'm lazy and strangers call me a drunk just really got to me today! Lol.

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11 Replies

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ziggyinhants12 years ago

welcome and soft hugs this is a good place to rant cry laugh or just need a shoulder xxxx

hamble99b• in reply toziggyinhants12 years ago

I echo all that.

welcome,

sandra.

Bongowench12 years ago

I can empathise with your annoyance but the problem is that there are so many people who are 'sick' to get the higher benefits that long-term illness brings and people with Fibro tend get classed with those because there's no apparent reason you're needing to sit due to exhaustion.

I have found that asking for help and saying 'Sorry, I suffer from Fibro Myalgia and today is not a good day' with a little smile, does help in such situations. It tells people that you're not drunk - they can hear you talk properly - and that you've not got a communicable illness -they really don't want to catch it. So then they can be risk-free good samaritains

Remember, its their loss as they've missed a chance to befriend you and get to know you. xx

hamble99b12 years ago

I cannot walk around supermarkets any more.

I use the shop scooters. many people will offer me help but there are the few who are ignorant. - your children would enjoy riding with you!

regards,

sandra.

Ginsing12 years ago

Welcome to the site and I hope you find it as beneficial as we all do. It provides a talking place to others in the same difficult boat. Humor on days when the world is grey and unforgiving. To be mistaken for a drunk is such a insult still we know how you felt rather battered and bruised by this stupid stranger. Ignorance does not give them the right to voice their opinions.. Manners are so important aren't they? Hope today you feel a little rested. Have a reasonable day all best xgins

Gerry12 years ago

I wish you well .

12 years ago

Thanks to you all. Don't feel so alone now. I've been reading other blogs too and its nice to see so many nice people all helping each other. I registered on this site ages ago and forgot about till till I checked my spam for the first time and seen emails from here. Wish i had seen them earlier. Today is no better with the pain and fatigue, and my memory has been shocking, put the keys in the fridge this morning and put my sons clothes in my daughters wardrobe which she thought was very funny lol!

12 years ago

Hello and welcome to our lovely forum Zararara! It's great to have you with us! Take a look round the Questions, Blogs and Tags, there is so much information there, also advice, support, personal experiences, friendship too!

If you have any concerns at all, please do not hesitate to contact us, we're only too happy to help! We all understand here, we are all in the same boat.

I hope you enjoy your time with us here at FibroAction!

SootyB12 years ago

Yes, I think we all have those memory moments! My favourite one happens regularly - I go to sign a set of patient notes, and realise I can't remember my name! I joke to the patients that that's why I wear a name badge; it's not for their benefit, but for my own!

The scooter around the supermarket might be your best plan. It's got to be better than exhausting yourself before you're even halfway around.

Keep smiling xx

Lisa4tommy9 years ago

Im so sorry. You. Were treated that way. I feel as if Im drunk from my Lyrica so I get scared to drive and Im tired all the time. Hope things get better xoxo

Janet289 years ago

Oh Zarararar I don't know which is worse, the looks from ppl. As I try to hobble found the shop with my sticks, holding on to anything else I can hang onto, or using a mobility scooter.

It's just pure ignorance and it all stems from the medical profession. Due to not understanding Fybro and because they couldn't find a reason they put it into the category of depression and mental health, this has stuck over the years to be known to most ppl. today that its not an illnesses, we have made it all up in our heads, because we are so depressed we feel all this pain.

This stigma has stuck because if you don't suffer with it or know someone that suffers with it, you wouldn't know any different because people are so uneducated about it.

it really is about time the General public were educated on Autoimmune Deseases and I know all this money is going to be ploughed into helping people with mental health (to little to late in my mind) but what about us. Are people ever going to be educated about Fibro etc. and how debilitating it can be for people.

Peace, Luv & light

Jan x