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Anyone here got fibromyagia?

PinkCandyFloss

PinkCandyFloss

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Joined
Feb 20, 2019
Messages
279
Location
Northern Ireland
Sorry only seeing this now! It will get to you, there’s no point me saying it won’t and holidays can tend to make things a lot worse as well. There’s some great support networks out there as well on the likes of FB and such. You will be surprised how many people are diagnosed with it. Maybe even people you know. It’s good to reach out, it also helps I personally find to have a dark sense of humour about it if you can. X
 
Lady in Blue

Lady in Blue

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Nov 9, 2019
Messages
74
Location
Toronto, Ontario, Canada
Im not after medical advice as such as i understand nobody is a doctor. But just wondered if anyone has it what you experience symptom wise. What you take to help relieve said symtoms and how you got diagnosed by a doctor.
When i google my sypmtoms it comes back with this quite alot so just wondered what i can say to doc to see if i have it. Thanks in advance :) xx
I was diagnosed with fibromyalgia in the 90's I believe (wow, time flies!) by an internal specialist. My gp flippantly referred me to him to make sure nothing crazy was going on, after having the sensation of feeling weak from the waist down. The specialist tested for other conditions including scleroderma which, thankfully was ruled out. I'm not your typical fibromyalgia case, as I don't have chronic widespread pain, so many times I wonder if I was misdiagnosed. I think I was exaggerating just to have something concrete to be diagnosed with, although he said I "definitely" had fibromyalgia. Anyway, long story short, my symptoms are mainly fatigue and multiple chemical sensitivity/environmental illness (which is worst than the fibromyalgia). I do have upper body muscle weakness and pain in one side of my neck that will recur if I strain it. Also, due to an upper back injury from weights at the gym, for years I would have excruciating, knife-in-the-back, take your breath away pain when triggered which actually affected my ability to swallow. Thank God I don't get these attacks anymore. I can get pulsating sensations in my legs, both lower and upper, and have developed carpal tunnel like symptoms, pain in my left hip and severe nerve pain in the inside of my elbow, with an accompanying skin tag of sorts. What I find about fibromyalgia is that it can make injuries more chronic. The cause is still not understood. One common theory is a response to a physical or psychological trauma, especially car accidents. I had all three - a car accident many years before the onset of FM; a dental trauma resulting in loss of blood; and a psychological trauma in the form of a loss. Neurology and immunology is also considered a factor (I had mononucleosis at one point, and the internal specialist told me it only shows up in your blood once, and if it shows up again it's a sign of fibromyalgia. So a virus like Barr Epstein is also believed to be one cause. A higher level of substance P (pain) and hormonal irregularities are found in some cases. A sleep disorder is also associated (unrestorative sleep) with it, as well as depression and anxiety. I manage it through eating as nutritiously as I can, getting as much adequate rest as I can (a hit and miss affair), and trying not to push myself too much - that's the difference between chronic fatigue and fibromyalgia: people with FM will feel better and try to make up for lost time, then there's a delayed reaction so that a day or so after you feel it. I hope this helps.
 
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Xxsarahl88xc

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Mar 10, 2019
Messages
46
Location
Grimsby
Hello, just an update ive got my results and i have inflammation in my sinuses. Ive been reffered to ENT to see what they say about it all which im obvipusly super pleased its nothing serious but its now just more waiting. Ive mentioned to the doc about the pain im constantly in so hes ordered me some blood tests which im going for tomorrow so hopefully know some more next week 🤞🤞🤞 xx
 
PinkCandyFloss

PinkCandyFloss

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Feb 20, 2019
Messages
279
Location
Northern Ireland
I’m glad you’re getting somewhere, I need to book in for bloods myself.
Just a heads up though, if they are doing certain tests which include ones for arthritis which they do before confirming fibro, they can take 4-6 weeks to come back and take a fair amount of blood. Not to scare you, just to be prepared as I didn’t know how much till I went in!

Waiting is the worst, my diagnosis is 99% as we have to wait on the rheumatologist confirming fully and I’ve been 2 years on that list alone!
 
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Xxsarahl88xc

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Mar 10, 2019
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Grimsby
Heyyy thank you for the heads up. He was really nice understood the need for something to be done told him its being going on for too long and it was getting me down. Not sure what hes ordered 4 me to be fair ive attatched the list it all means nothing to me haha! X
 

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PinkCandyFloss

PinkCandyFloss

Well-known member
Joined
Feb 20, 2019
Messages
279
Location
Northern Ireland
I know what you mean, doesn’t mean much to me either lol. But it could be a lot or it may not, just if you’re a fainter like me be ready lol
 
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Xxsarahl88xc

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Mar 10, 2019
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46
Location
Grimsby
No luckily not a fainter ha ha! Bless ya id hate that x
 
Lady in Blue

Lady in Blue

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Toronto, Ontario, Canada
PinkCandyFloss, I remember those blood tests - 13 vials one day, 14 the next. I was unsteady on my feet for months afterwards.
 
PinkCandyFloss

PinkCandyFloss

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Joined
Feb 20, 2019
Messages
279
Location
Northern Ireland
PinkCandyFloss, I remember those blood tests - 13 vials one day, 14 the next. I was unsteady on my feet for months afterwards.
It was awful I was still struggling to work at the time and went in after! I was told by my trainees to go home and had to tell my manager I was going, not ask, tell and then spent the day in bed before I had to drag my ass back!
Then they “lost” some of my vials and I had to get a bunch done again 😭
 
PinkCandyFloss

PinkCandyFloss

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Joined
Feb 20, 2019
Messages
279
Location
Northern Ireland
I mean, I get where he is coming from. Still don’t understand how they lost my blood....
 
Lady in Blue

Lady in Blue

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Nov 9, 2019
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74
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Toronto, Ontario, Canada
Oh, I know they need large samples, but you're right, the room for administrative error is rather disconcerting.
 
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Xxsarahl88xc

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Joined
Mar 10, 2019
Messages
46
Location
Grimsby
Why does my body hate me so much :(. Ive been suffering with a bad back and pains all down my legs (siatica i think) for the past week!. I was just getting back to normal but when i just jumped in the bath i got like a cramp like pain in my left buttock down into my thigh. Had it for about half an hour now so of course my mind is going into overdrive. It seems my body punishes me. Ive had a really good day with the family took the kids out teach them how to ride their bikes, played games. In the park. Me and the hubby was planning on settling down treat ourselfs to a bottle of wine and a takeaway while watching a film but now i cant cocentrate on anything else and cant even think about eating!!! It completly annoys me coz its like my body does it on purpose to ruin things. Sorry abt the long post i wanted a rant and rave. I hope your all well xx
 
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Beckib

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Nov 26, 2019
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57
Location
Sheffield
I have it along with schizoaffective disorder.
I have extreme fatigue and tiredness. Muscles cramps, stiff muscles. Extremely tender to be touched on certain parts of my body. Bad concentration at times. Bad sleep at times. Bad stomach at times.
I work in an office, do gentle exercise, yoga and aqua jog to try and keep my weight down. I try to keep going as much as I can, I feel stopping makes things worse for me
 
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