Fibro and Me

[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

 

[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

I've been to minor injuries this morning and ive got Tendonitis and potentially a tear in one of my tendons!

 

[Archduchess of Luxembourg]

I've been to minor injuries this morning and ive got Tendonitis and potentially a tear in one of my tendons!

Holy moly! How are you feeling? Did they give you anything to help with that specific pain? I'm so sorry to hear

 

[annabell0728]

Holy moly! How are you feeling? Did they give you anything to help with that specific pain? I'm so sorry to hear

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?

 

[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.

 

[Chunkeylaydee]

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

 

[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.

 

[Lilbear1]

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
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

 

[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

 

[repairshoplover]

Hi, has anyone with fibromyalgia gone on to be diagnosed with lupus?

 

[Silverback]

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!

 

[repairshoplover]

What is curable?

 

[Silverback]

What is curable?

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.

 

[repairshoplover]

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.

Does it cost money?

 

[Silverback]

Does it cost money?

Yes, I think £50 a year ish. I’d pay 5 times as much as it changed my whole life.

 

[blackmasque]

Sounds too good to be true

 

[Silverback]

Sounds too good to be true

I thought the same thing. All I can do is recommend it, if nobody ever believes me and tries it or listens to their podcast- well, I tried.

 

[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.

 

[Lilbear1]

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.

Thank you. That was brilliantly said