Fibro and Me

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Lilbear1

Lilbear1

Well-known member
CrazyHorses said:
Hi
I am quite new to posting on Tattle, I saw this thread and thought I would try and post.
I have fibromyalgia, I was diagnosed a few years ago. Last year I lost my job as I was so poorly I just couldn't carry on working, I am now waiting to speak to the Neurologist. Has anyone else discovered that family and friends just don't bother with you anymore? I am really beginning to feel like the "outsider" I get the feeling people just cannot handle people being poorly,when previously they were relatively active before the fibromyalgia really took hold.
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Yes i think people dont understand as its not a "visible" disability.
My family despite knowing about fibro still dont understand.
Luckily my partner does most of the time.
Its 💩 having fibro isnt it😢
 
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Archduchess of Luxembourg

Archduchess of Luxembourg

VIP Member
Hi everyone. I am so glad I have found this thread.

Has anyone else tried changing their diet to see if that helps? I cut put gluten, dairy and alcohol and its not a cure but it seems to have helped a little.

Does anyone else seem to suffer so much more at their 'time of the month'? I seem to be extra sore, exhausted and brain fog is worse.

Does anyone have opinions on whether a soft or firm mattress is better?

I've been so alone for a long time with this so I am sorry for all the questions but I hope we can offer each other support with this bastard illness xx
 
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Lilbear1

Lilbear1

Well-known member
boobear191 said:
Hey guys is anyone still around on this thread?

I have a couple of questions but I feel kind of stupid or I’m just worrying, for years I’ve had continual excruciating pain in my legs / knees, every now and again I do fall, like say I’ve woken up, stood to get out of bed & I’ve just dropped down because my legs have gave way sort of thing.
I’ve fallen at the end of the drive once because of my legs & im embarrassed by it I’m 20 years old, my mum has fibromyalgia which was diagnosed a few years back & I’ve had this ongoing pressure in my legs for so long but I’m anxious of calling the doctors over it because I have no idea what to even say to the receptionist. (They always ask what’s the issue etc) and I end up not knowing what to even say lol.

I’ve got anxiety which I’m on beta blockers for & had 2 operations for ovary cysts & have ongoing stomach pains so I’m on cocodamol & Ibuprofen they don’t really touch this pain in my legs though. but it’s a few things I seem to get that ‘flare up’ now & again and when they do it’s really bad, I don’t want to ‘self diagnose’ hence searching for a thread for advice from people who really do suffer with fibro

I take vitamins every day like iron, vitamin d3, zinc, turmeric as it’s supposed to help inflammation,& b12. I started taking these around October last year as I thought what’s to lose if they help the pains I’m having but I’m still in agony , I’m having these weird ‘brain zaps’ like electric shocks & migraines? Can’t walk much because I’m in so much pain with my legs Had a brain MRI done & as far as I’m aware everything seemed okay on it, the mri was because I’m throwing up all the time & still no idea why, they just put me on sickness tablets & im just having to try and get on with it , I’ve always got this unbearable heavy weight on my legs, sometimes my lower back causes me agony & these migraines, hot flashes at night time where I’m sweating, my feet get like pins and needles , sometimes numbness which is when I end up falling/legs like jelly

I can’t really remember how my mum got diagnosed I think I remember her saying they put these needle things in certain pressure points (?) & the doctor went off that with her
but with me being in the doctors eyes ‘young and seemingly fit/healthy’ I’ve been putting off going to them for years with this pain I’ve had this pain with my legs since I was about 17 because I feel a bit silly incase it’s like, you can’t even get fibromyalgia at my age or they just think I’m wasting their time. 😕
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Hi there
Its not silly at all & yes as other poster said fibro CAN happen when your young.
I was diagnosed with fibro 10 years ago & some of your symtoms relate to fibro but then could be a million other things too.
Please go to your gp-you cant keep suffering like that
Keep us updated on your progress💜
 
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patsy_stone

patsy_stone

Member
I was diagnosed earlier this year...I, too, thought it meant answers, but I'm now stuck in a sort of limbo, with things getting progressively worse.
 
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Silverback

Silverback

VIP Member
Hey everyone

I used to have fibro so bad that I couldn’t do anything around the house at all. I was in agony constantly. Couldn’t even go for a short walk.

During lockdown I learnt about Curable from someone on mumsnet and it changed my life. Turned out all the pain was caused by my body overwhelmed with trauma and stress. These days I’m in zero pain apart from the odd flare up- which I keep in check by using Curable again.

I literally cannot recommend it enough- but nobody I’ve recommended it to ever seems to believe me!
 
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A

annabell0728

Member
Archduchess of Luxembourg said:
Holy moly! How are you feeling? Did they give you anything to help with that specific pain? I'm so sorry to hear :(
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Hey guys! I’m new to tattle ( wow, didn’t know how many people thought about certain things like I did!) … I have been diagnosed with fibro for 5 years. Straight after having cancer. How are you all doing?
 
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Lilbear1

Lilbear1

Well-known member
dorydaryl said:
Hi. Just chipping in to say I've lived with Fibromyalgia for over 35 years (am 53). Was confirmed at the end of last year, after being misdiagnosed with everything ranging from MS to a possible rare form of Motor Neurone Disease. I often felt unwell as a teenager but thought it was just 'hormones'. The symptoms really kicked in after a bout of teenage anorexia/ bulimia, followed by my one and only experience of a nasty 'flu virus, during which I had pneumonia and never sought help for until I was over the worst, because I was just still so damned exhausted all the time. Have had many of the symptoms people have already mentioned on here. It has been a long, frustrating journey. There are psychological components to it, indeed, and I think part of learning to live with it is accepting this. However the symptoms are very real and, I think come from the way our bodies try to cope. It is not a purely psychological disorder, by any means and even specialists (of which I've seen several) struggle to define or explain it, which often leaves sufferers feeling lost, frustrated and isolated. As a neurologist explained to me, the symptoms cut across many disciplines (i.e. neurology, psychology, orthopaedics, rheumatology) and it's difficult for medics to get a comprehensive handle on.

I do have degenerative spinal disease, which has complicated matters, but this, in itself, doesn't explain all the other symptoms, especially fatigue, certain pain, brain fog, neurological issues and hypersensitivity. It's very difficult for people to understand, even those closest to us, which makes the isolation worse. I have 'good' and 'bad' phases. Over the years, I'm learning not to apologize for it. If others can't accept it, it's not my fault and I'm done with years of guilt. Generally speaking, I'm a positive person who has done many things, despite setbacks. My life hasn't turned out to be the high-flying experience it was destined to be. There are always things I need to work on but I've accepted that there are times when I cope (and make the most of) and times when I don't.

I cannot work full time, so I volunteer (something the DWP really can't get their heads round) because I want to be as useful as I can. As I explained to a benefits assessor, 'Why would a person with 3 degrees and a history full of volunteering not want to be in paid employment?' It's because my condition makes me unreliable. The bad days/ phases are crippling and I can never tell when these will be.

It's good that there is a thread on this, here. I would imagine it's not too 'busy' because many Fibro sufferers don't want to be seen to be 'complaining' (even online). From others I've met, we tend to be proud people who don't like to make a fuss and who are used to negative reactions from others (in their many guises). Sometimes, just living with it is the challenge and even talking about it is an effort.

It's wonderful that some people feel that they can or have overcome it and that it's possible to do so. For me, the reality is that I am in the process of making my peace with it. I do many things (psychologically and physically) to work with it. Each person is different and what works for some will not work for others. That is not a failure, if it doesn't. Living with it is an achievement in itself. If anything, we can help GPs, other health professionals and other 'officials' understand it better by being honest about how it impacts upon our lives and what we need in order to live more comfortably. Sadly, that doesn't always come in the form of medication but it can be better with appropriate support and understanding. That comes from within and through the assistance of compassionate others, when needed.
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Thank you. That was brilliantly said 💜
 
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ronniestigs

ronniestigs

Member
ronniestigs said:
I'm really struggling atm with pain in my hand, specifically my index finger, and a little in my middle finger too. its at the point it hurts to do anything (and of course its my left hand, and yes, I'm left handed)

compression gloves, and a hot water bottle don't help, nor painkillers or fenbid gel
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I've been to minor injuries this morning and ive got Tendonitis and potentially a tear in one of my tendons!
 
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Silverback

Silverback

VIP Member
repairshoplover said:
What is curable?
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It’s a recovery programme that you access through their app. They educate you on what causes the pain physiologically, and then they help you cure it. They also have a podcast with tons of incredible recovery stories. One girl had loads of back surgeries, but it was curable that got rid of the pain.
 
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repairshoplover

VIP Member
Silverback said:
It’s a recovery programme that you access through their app. They educate you on what causes the pain physiologically, and then they help you cure it. They also have a podcast with tons of incredible recovery stories. One girl had loads of back surgeries, but it was curable that got rid of the pain.
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Does it cost money?
 
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