Fibro and Me

[Chunkeylaydee]

Hi

I’ve seen a number of people posting about being diagnosed with Fibromyalgia. I thought I could create a thread where we can chat freely about living with Fibro.

Chunkey

 

[cantthinkofaname2]

When you see this post after a ridiculously shit fibro day. Every single bastard day is a battle whether it be physically or mentally and I’ve had enough

 

[CrazyHorses]

Does anyone else feel like they are drunk when you are walking about, but you know you haven't been drinking. It's like a floaty feeling like you are trying to walk on a water bed and not fall over. Also does anyone have bouts of uncontrollable crying or laughter or a mixture of both?

 

[dorydaryl]

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.

 

[CrazyHorses]

Hi

I’ve seen a number of people posting about being diagnosed with Fibromyalgia. I thought I could create a thread where we can chat freely about living with Fibro.

Chunkey

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.

 

[Lilbear1]

Wow thank you for starting this post. Was diagnosed with fibro 9 years ago.
Would be great to chat to everyone in same boat

 

[ronniestigs]

I’m really struggling post covid. I’m on the permanently exhausted train… my pain levels are through the roof and for some reason, I keep bruising.

I'm finding post covid life a lot harder, i get exhausted so much easier.

sending you love

 

[fnddlsoxnz]

Hi everyone, I was diagnosed today with fibromyalgia today and I don’t really know how to feel. Even tho I got a diagnosis after suffering for 3 years I still feel like there’s more to it I

 

[Chunkeylaydee]

Hi everyone, I was diagnosed today with fibromyalgia today and I don’t really know how to feel. Even tho I got a diagnosis after suffering for 3 years I still feel like there’s more to it I

I’m so sorry. It’s a lonely path to follow and navigate. What works for one person doesn’t always work for someone else.

 

[Chunkeylaydee]

I was diagnosed in 2009. I thought finally answers. But realised it was a long lonely road to navigate.

 

[TapToBoreMeRigid]

I was diagnosed 2 months ago after a year of investigations but 8 years of worsening symptoms. Devastating to me.

 

[Be More Pacific]

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.

Hi there,

Firstly, if you're worried, then it's not silly or stupid.

There are a few things in your post that speak to me and I'd like to ask a few more questions if that's ok? I'm not trying to diagnose you - I just think that you may need to speak to your GP and get some further investigations done.

The pain in your legs that you describe along with the pins and needles, the numbness, your legs giving way - can you describe the type of pain if you can? Does it maybe feel like stabbing, burning, crawling or itching? If so, it may be that it's due to nerve damage, which is why normal painkillers aren't touching it. But there are drugs that can help so it's definitely worth speaking up. When you say it feels like you have a heavy weight on your legs, does it feel like your legs are dragging or not able to keep up with you somehow?

When you say "it’s a few things I seem to get that ‘flare up’ now & again", what sort of things and how often does it happen? Does there seem to be any kind of trigger for these flare ups or is there no rhyme or reason?

You talk about "weird brain zaps" like electrical shocks. Where can you feel those? How long do they last?

In relation to your MRI scan, which you said was undertaken to try and get to the bottom of you being sick, did anyone ever discuss the results properly with you at all?

Have you talked to your GP about any of this?

You seem to have a lot on your plate with your health, which can't be easy at your age. Do you work or go to college? What kind of things do you do socially if anything? Do you work out at all?

I should point out that I don't have fibromyalgia so can't comment on that as I really don't know much about it.

 

[Rockin' Robin]

My partner was diagnosed with Fibro a few years ago. It is heartbreaking to see him struggle day to day, and every day is different. I am wondering what kind of support and trearmtment might be available - other that dosing himself up with prednisolone.

 

[ronniestigs]

i was diagnosed in 2019.

feeling particularly exhausted tonight

 

[CrazyHorses]

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

I think you are right about fibromyalgia not a visible disability. Absolutely I hate the fact I can no longer do the things I use too. Everything I want to do has to be paced out. The most simple of jobs can take me alot longer to do, if I try and push myself to do more it can leave me in bed all day the following day. I struggle to sleep the pain in my legs feet and back are just constant,along with restless legs. I have been having episodes of my hands and fingers going into spasms. Brushing my teeth or my hair can be painful.

 

[Chunkeylaydee]

I think fibro can start at any age. Worth speaking to the Gp x

 

[boobear191]

Hi there,

Firstly, if you're worried, then it's not silly or stupid.

There are a few things in your post that speak to me and I'd like to ask a few more questions if that's ok? I'm not trying to diagnose you - I just think that you may need to speak to your GP and get some further investigations done.

The pain in your legs that you describe along with the pins and needles, the numbness, your legs giving way - can you describe the type of pain if you can? Does it maybe feel like stabbing, burning, crawling or itching? If so, it may be that it's due to nerve damage, which is why normal painkillers aren't touching it. But there are drugs that can help so it's definitely worth speaking up. When you say it feels like you have a heavy weight on your legs, does it feel like your legs are dragging or not able to keep up with you somehow?

When you say "it’s a few things I seem to get that ‘flare up’ now & again", what sort of things and how often does it happen? Does there seem to be any kind of trigger for these flare ups or is there no rhyme or reason?

You talk about "weird brain zaps" like electrical shocks. Where can you feel those? How long do they last?

In relation to your MRI scan, which you said was undertaken to try and get to the bottom of you being sick, did anyone ever discuss the results properly with you at all?

Have you talked to your GP about any of this?

You seem to have a lot on your plate with your health, which can't be easy at your age. Do you work or go to college? What kind of things do you do socially if anything? Do you work out at all?

I should point out that I don't have fibromyalgia so can't comment on that as I really don't know much about it.

Hey no it’s fine thank you for replying and the other poster below it’s difficult to describe but the pain in my legs - it’s mostly below my knees & my knees sort of combined it’s a constant ache/heavy weight like my legs are dragging yeah! that doesn’t go unless I’m lay down or have got in bed and i get a bit of relief from that pain .. Sometimes one or both of my legs or by my ankle swell up & I have no idea what causes that to happen or why it does, the pain in my legs is so bad I’m not even joking I want to seriously chop them off some days it’s that horrific x

the brain zaps I don’t get all the time but now again, they can last a couple seconds not long at all but enough that it’s noticeable, if that makes sense ? I get bad migraines almost every day / most days, tbh I’d say 5/6x a week.. The most excruciating pain too.
But there is a few things going on in my family/life that I am stressed about so that might be why I’m having the migraines I really do not know, but I’ve been having them way too frequently for the past 6-7 months.. the brain MRI - never got like a phone call or letter about my results, it was when I rang about a different problem, I asked if theyd had my results from the MRI, and they just said everything come back ok. I get anxious asking ‘more into things’ so I just sort of leave it at ‘oh ok that’s good’ then I go home & I feel ridiculous/like I’m going crazy because somethings not right with me it hasn’t been for a while & it’s really getting me down; but I don’t know what. I hope I don’t sound like I’ve got that Munchausen's lol

Even right this moment my legs are killing me, if it’s not my legs, it’s my lower back, my head, my neck, or my feet, just a continual ache in them areas almost all the time.
I will be honest I don’t have much of a life at all, I don’t go out other than food shopping, or with my mum / dad to their appointments as they’re old sort of fragile & I worry about them both going on their own, I don’t go out clubs or pubs/parties etc I find it a huge struggle even walking down town which is probably at most a 10 minute walk. I’ve never been in an accident or anything that would sort of warrant all this pain / leg pain, it’s just something that’s gradually built up and up & feels like it’s getting worse. The situation when I’d fell at the end of our drive has always stuck with me because people saw, they laughed, which I suppose it was funny to them lol. but it’s made me to a point I’m embarrassed to go out in fear of that happening again, it’s like my feet just go completely numb or I get them pins and needles &my legs just completely give way & I fall. There’s no warning or anything

Just really sad because most people my age don’t seem to have these type of struggles or anything like this going on that holds them back in a way, everything seems perfect & i wish it was different because I feel like for the best part of 3 years I’ve been like a prisoner in my own home

 

[boobear191]

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.

 

[ronniestigs]

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

 

[Chunkeylaydee]

I’m really struggling post covid. I’m on the permanently exhausted train… my pain levels are through the roof and for some reason, I keep bruising.