How do you explain Fibromyalgia to pe... - Fibromyalgia Acti...

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How do you explain Fibromyalgia to people outside of your family when they ask about your health?

Mdaisy profile imageMdaisy390 Voters

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88 Replies

I go on to ask the person if they have ever had a migraine. If so, I explain that is what I have but all over my body all the time.

fenbadger profile image
fenbadger in reply to

I like that. I usually say something close to no 4. "It's difficult to explain" which for me is accurate. I don't think it needs to be terribly complicated.

Redbob profile image
Redbob

I say "it's having one condition but it has a lot of symptoms".

yeleek profile image
yeleek

Think I am still in denial so don't tell anyone outside family

alexander120 profile image
alexander120

I too am in denial and don't speak about it even to my family

Lakikette profile image
Lakikette in reply to alexander120

I still feel guilty and think I am the problem so better not talk when I can't even understand myself :(

Poppy-poppy profile image
Poppy-poppy

I say that it's like shingles all over my body and terrible fatigue and aching joints.

I say I have fibromyalgia and when asked what that means I say I have pain and fatigue all of the time that is sometimes worse than others - and describe it like how you feel with flu or hangover! I also say that my sleep is affected so when I wake up I feel like I haven't slept. I also say that I can't think straight or concentrate some of the time and compare it to walking in treacle when thinking.

NWG23 profile image
NWG23

I usually say I have a muscle pain condition called Fibromyalgia. It's a syndrome that for me causes poor sleep which leads to widespread pain like you get with the flu but that it causes depression in me too. I'm amazed actually that some people know about it already.

Charlie1 profile image
Charlie1

Chronic pain (back + GCA/PMR) has triggered a condition of the pain system itself -also causing fatigue.

000Linda1964 profile image
000Linda1964

I usually say I have a central nervous system disorders called fibromyalgia and this affects a lot of systems in my body the main symptoms being chronic pain and fatigue.

cally911 profile image
cally911

I say it's like having flu and arthritis all over the body including the brain

Lottieonline profile image
Lottieonline in reply to cally911

I say similar to all of the above!

I say it's like all my muscles as I have all 18 points affected now, are being crushed by a Boa Constrictor with a bad bout of flu.

I have to really push myself out of bed into the shower etc. oh and the terrible depression that comes with it!

They nod but still don't really get it!

huggs2109 profile image
huggs2109

I was only recently diagnosed and have only spoken to close friends and immediate family about it. Think I am still in denial too.

rosewine profile image
rosewine

I say that it often feels like very bad flu but without the respiratory infection and only go into more detail if asked.

Mrs_allen profile image
Mrs_allen

I say that my brain sends signals to the pain receptors which causes pain all the time in my muscles and tendons. I also say that if they hurt themselves it hurt me 10 times worse and I don't sleep well so my muscles can't recover at night which then causes the pain and it feels like someone is stabbing all my joints.

And a flare up is caused by stress, illness or something like a car accident.

I sometimes also explain the spoon theory

butyoudontlooksick.com/arti...

mason profile image
mason

i dont bother if you try to explain you just get odd looks unless you have fibro you cant understand the pain tiredness flustration so many symptoms .

Kaza246 profile image
Kaza246

Hi am new to this but I say I am acking all the time an fed up with it everyday it feels like inflation all over my body or arthritis all over people say it sound bad I hate the acking it gives me

covbabe profile image
covbabe

I say that it's a combination of symptoms that are made worse by pre existing conditions. Most people look at me with sympathy or say that it must be hard to live with. I wholeheartedly agree!

Rachelle400 profile image
Rachelle400

I say I have some health issues or mobility issues

Spanner3 profile image
Spanner3

Get them to read 'The Spoon Theory by Christine Miserandino'. She's got lumpus, think that's how you spell it.. But I think it gives a good idea of what we all go threw just to function and get threw a day.

FoggyMoggy profile image
FoggyMoggy in reply to Spanner3

Lupus, I guess ;)

But yes, the Spoon Theory is a good one and I thought of that today before seeing this survey - I thought of posting it on Facebook

willowpal profile image
willowpal

I don't really talk about it, and to my family only now and again do I say I'm in pain, they ask what with and I'll say just fibromyalgia. I try to brush it away as fast as I'v said it

Sometimes I say that i have Fibromyalgia and that it is a Neurological condition that affects every part of the body. Causing constant all over pain, fatigue and problems with the way our brains work.

Plus lots more.

Usually though, if i can see that they are not really interested i just say that it is neuralogical.

wincoupe profile image
wincoupe

My mother thinks everyone should work no matter how I'll they are so although I do try to tell her it falls on deaf ears.

Elle-26 profile image
Elle-26

I just let them know to educate them that ask ... Fibro for me is secondary to Lupus ... people seemed to worry more when I lost all my hair and eyelashes etc ... I think I dealt better with that than with the constant pain .. losing my hair didnt stop me from horse riding or doing stuff (even though it was traumatic) Lupus/Fibro mix has knocked my age to over 100 :( Thing is no one sees the devastating effects of this illness ... I seem to be the one trying to hid it as Im humiliated by what ive become ... -x-

TheAuthor profile image
TheAuthor

After that I then go into details of my other illnesses unless the person I am talking to has already glazed over?

Tanks Emma

Ken x x x x

khwai profile image
khwai

You get the same look if YOU

Say aliens abducted me for testing

permanentgrowingpain profile image
permanentgrowingpain in reply to khwai

love it -- yes i sometimes say im an alien and i have got this condition because i dont belong here lol

cowsrock profile image
cowsrock

Some times just say it's a pain thing that gets worse with time.

hamble99b profile image
hamble99b

it just depends who is asking.

honor1a profile image
honor1a

i say I have chronic pain & fatigue, it's called Fibromyalgia, I have several other symptoms too but too much to go into! xx

koohpi profile image
koohpi

nobody gives a s***, I've had Fibro since 1980, at 70 years old, if I'm in so much pain I go to bed, I no longer take their medication, tooooooooooooooo many side effects, GP's cannot handle the problem of Fibro, their answer is "Let us try this rubbish medication, it might make you sleep for a week, but!!!!!!!!!!!!!!!!"

I've reversed the concept of pain "pain now gives me pleasure" you see it's all in the mind, that's all they have told me over the years, the most important thing is STOP SMOKING, if I can't sleep, I have 2 glasses of Brandy, no side effects, I take Manuka Honey 3 times a day, and cook fresh food and make my own bread every day, and most of all I KEEP AWAY FROM THE MEDICAL PROFESSION, they make you ill.

Naturegirl profile image
Naturegirl in reply to koohpi

Hi Koohpi, I find your letter interesting - I too have had fibro for 30 odd years, however only got diagnosed 10 years ago. Your comment about stopping smoking caught my attention. I gave up smoking for 8 years, but felt no different. Six years ago I was involved in three accidents with a time span of six months apart and got so angry that I started smoking again. I cannot say that it affected me in any way, except it saps one's energy. Don't get me wrong I am a health fanatic with a serious addiction now. The plan is to give up very soon. Did giving up smoking make a difference to you? I live in Africa Namibia and don't know anybody that has fibro, hence the reason by being on this site. Keep up the brandy haha :)

koohpi profile image
koohpi in reply to Naturegirl

Giving up smoking made a vast difference (I was smoking 15 medium cigars a day) I stopped smoking on the 15th April, 2006, it took about 2 years to clear my lungs out, to date I have NOT smoked 98,880 cigars, I HAVE actually saved £36,585.60 this money allows me to have expensive holidays in top hotels, Easter I had 5 days at The Grand Hotel, Eastbourne, cost £2,500.00. Does giving up smoking make a difference to me, what do you think!!!

FoggyMoggy profile image
FoggyMoggy in reply to koohpi

Brandy no good for me. Any alcohol gives me migraines :(

koohpi profile image
koohpi in reply to FoggyMoggy

Try Feverfew Migraine Relief, and watch what mouth wash you use, some contain alcohol.

FoggyMoggy profile image
FoggyMoggy in reply to koohpi

Feverfew has never worked for me. I have to take strong meds. Syndol was the best before they removed the doxylamine

SquareD6 profile image
SquareD6 in reply to koohpi

Hello Koohpi, sorry I found it amusing when you said pain is all in the mind. A hospital physiotherapist told me if I focused on something other than pain, I would be pain free, like I would want to imagine being in this amount of pain & feeling like I could sleep for at least a week, (if only).

Nobody really understands the effects of fibro on anyone unless they too have fibro.

I'm struggling to stay at work, but, honestly at the moment I think the fibro & osteoarthritis are winning & me staying at work is looking less & less viable.

I have never smoked so I can't comment on that

Stay strong, you are not alone lol XX

koohpi profile image
koohpi in reply to SquareD6

After 2 years of tests in various hospitals, I asked a Consultant could ME be causing all my problems, to which he replied you might as well say its sun spots, that's giving you the pain, a year late an Aussie Doctor, pressed certain parts of my body, and declared you have FIBRO, it was then that I lost complete faith in the medical profession, I now know why they call them Practitioners, they know nothing, but can practice their trade on you even if it might kill you, BECAUSE IT'S LEGAL, I self medicate (herbal) and they hate it, check, check and check your medication before you take it, it could make you ill. I had to stop working 16 years ago, but I'm very lucky, I have a good wife, married 41 years, 10 years younger than me, still working (my pension), my famous quote to the medical profession is "Fk Em All" take care SquareD6 we will find a cure xxxx

cruz profile image
cruz in reply to koohpi

Your comments sounds very good to me, as I don't really want to take drugs but if I have a few glasses of red wine I sleep like a baby but realise I can't do that every night so just trying to see what works for me, one day good next day bad seems to be the norm!!

permanentgrowingpain profile image
permanentgrowingpain in reply to koohpi

yes i agree drugs are killing us

ninjananna profile image
ninjananna

I tell them it's a chronic pain disorder with similar symptoms to MS! People can relate more about an illness they have heard of.. xx

FoggyMoggy profile image
FoggyMoggy in reply to ninjananna

I agree. I usually say ME. But also mention MS as another member of my family has it

Ginsing profile image
Ginsing

I am often asked why I walk with crutches so I explain that I have Fibre plus my back /hip (lost them at this point they look back glazed eyes) t ime to release them from their question . I bet they wished they had not started their poliet enquiry.

Good Poll M Thanks Ginsing

stimpy profile image
stimpy

i say I have a neuromuscular condition with symptoms similar to MS but without the permanent nerve damage and future prognosis (I wont end up in a wheelchair). I find people find it easier to understand if you link it to a condition they have heard of rather than just listing my many many symptoms.

FoggyMoggy profile image
FoggyMoggy in reply to stimpy

Yes I say they same as a member of my family has MS. I also say ME. More people have heard of both MS and ME. I think there are huge overlaps eg flairs and fatigue. MS has Primary Progressive, Secondary Progressive and Relapse remit. Wouldn't surprise me if ME and Fibro have the same. Some people are in wheelchairs with Fibro and ME

Lottieonline profile image
Lottieonline in reply to FoggyMoggy

I have to admit I am now in a wheelchair whenever I go out. If I go alone then I use my mobility scooter, I just can't stand or walk more than a few steps.

The pain is definitely getting worse and much more intense, I feel so embarrassed sitting in one never did I see the day me using a mobility chair of some sorts.

My daughter is getting married next year and I told my mum, I'm going to look such an idiot in a wheelchair and she replied 'well for that special day, you'll make an effort not to, and just stay sitting down on a chair'

I've realised she's embarrassed of me. Oh how terrible for her to feel like that about me 😔

FoggyMoggy profile image
FoggyMoggy in reply to Lottieonline

That is awful, Lottie. Fancy making you feel like that about a wheelchair or scooter. That is her problem for not supporting you not yours and you need to tell her. You must not let her pressurise you because of her prejudices. That is discrimination against a disabled person. People will be concentrating on your daughter not on what you arrive in...or they should be. The fact that you're going should be what people care about, not what you're sitting on!

Midori profile image
Midori

I depends who I am talking to, mostly I say I have a Rheumatoid condition, they usually don't ask too much after that. Some folk are endlessly curious and I am a very private person, so I don't give them much info.

FoggyMoggy profile image
FoggyMoggy

I say it's like ME. I think people are more aware of ME than Fibro. If they look blank I then say about chronic fatigue and pain and also add in about my anxiety and phobias as these predate fibro although they may be part of the same thing. It depends how receptive people are. If they don't look very empathic the more you have to say - but sometimes it's a waste of time

Nita7 profile image
Nita7

My friend's daughter asked me if I enjoy going to the doctor so often! I tried to explain, but did not change their minds. Sent some info to my friend but I think they really enjoy their opinions. So, I do not explain anymore!

Regards to all of our fibro friends.

SquareD6 profile image
SquareD6 in reply to Nita7

I have had that too, but from my sister, she suggested I took my bed & moved into the doctor's surgery, needless to say that despite her being a carer for the elderly she doesn't understand what her sister is going through.

permanentgrowingpain profile image
permanentgrowingpain in reply to Nita7

yes i do have someone who issues a similar response and also her favourite one is your always ill arent you so i say yes it helps to alleviate the boredom in your company and when she comments on my limping which i cant hide i say what a imagination youve got, what limp. ??

really bitchy isnt it . dont be a victim with these sorts get even be smart as they are think they are . re the doctor say actually its a time warp when i walk through the door i go into another dimention its a new treatment for fybro .

let you mind run riot and fireback the nasty insinuations .

SquareD6 profile image
SquareD6

I usually say it's a form of arthritis that affects the nerves & muscles

After once experienced a conversation when I was asked what 'ailed' me, I replied Fibromyalgia - to which their reply "Oh I think that is just a made up illness, why do you think you have that - it is just a fob off when either the doc thinks you are swinging the lead or he doesn't really think you have a proper ailment" . That was the first and last time I bothered explaining anything about my health conditions. When asked I simply tell them that I was born with quite a rare renal disease (true) If nothing else and everything else is an off-shoot of this. If nothing else it shuts them up and prevents any inquisition into what I consider to be my concern and not theirs.

Piggysqueak profile image
Piggysqueak

I say fibro means any soft tissue muscle etc and myalgia me and pain everywhere and exhaustion .

Micro profile image
Micro

I've not found the most useful way. Some people have heard of it so I do say'fibromyalgia', widespread pain and fatigue. I explain my back pain as like that of an abscess on a tooth, severe toothache over a much larger area than a tooth.

I like Cally's description, Arthritis and Flu people recognise.

koohpi profile image
koohpi

The whole country seems to be running for CANCER, great but how about us starting a campaign to "WALK FOR FIBRO" because when we do it really hurts, we can't run or walk without PAIN, we need a cure. xxxx

koohpi profile image
koohpi

"WALK FOR FIBRO" we can't WILL YOU???

Lucyhobbit profile image
Lucyhobbit

I say that I have a joint disorder which causes a lot of pain in every joint every day.

jcrawford profile image
jcrawford

Maybe it's just the people around me who ask, but they don't accept it as just something that's sensitivity to pain or chronic fatigue, but they'll accept that it's a type of complex, incurable nerve disorder. I guess it's kind of like telling someone over the phone that you have a cold but they don't believe you because you don't sound stuffy enough to their liking.

I have said other because I always say that I have Hypermobility Syndrome (HMS) first because it is my primary illness and is a collagen disorder that has left me with loose knees etc and problems with dislocations and mobility problems. I also have IBS and Chronic Fatigue as a result along with many other health problems........ including hypersensitivities :o

Next I say that I have also got Fibromyalgia as a result of overstretching and traumatising my joints through being an athlete with HMS and into sports from the age of 5 years old.... generally overactive for someone with HMS as we are prone to damaging anything made from collagen, which I did not know at the time when growing up :o eek!

I explain that Fibromyalgia is a Chronic Pain Disorder meaning I'm always in pain sometimes bad and other times really bad and that I also suffer with various other illnesses such as IBS, Chronic Fatigue Syndrome and many other health issues as mentioned earlier.

Some people remain interested others don't!

I learnt a long time ago to not let it bother me too much whether they do or not because the second time I see them and they ask if I'm ok they get the 'yeah! thanks!'

I think as individuals we create our own way of explaining it because no-one in the Medical Profession can ............. so we make the most of it to descibe it.

I have used the FAQ's from fibroaction.org (FibroAction) and this forum to help me alongside what the Rheumatologist told me about the HMS and how it has affected my body over the years from being very, very active to not active at all and the effects it has had on my body in later life :o

There are also other informative websites such as patient.co.uk and webmd.com that have useful information regarding Fibro that can be used to help explain it.

I beleive that my Fibromyalgia is a result of my HMS because it is how I truly feel about the subject until someone from the medical profession tells me directly what my Fibromyalgia is and what caused it :)

Well that is my story :)

I hope you haven't fallen asleep reading it :P

Fibro busting fluffies for everyone :D

xxx sian :)

I say to them if you can imagine the pain you get when your calf muscle cramps up!! Then try and imagine that all over your body 24/7

beingill profile image
beingill in reply to

Hi there that's so true my kids being older can tell when I'm bad my eyes droop my body droops you feel like you've been beaten in a back alley but with no bruises or broken bones to show for it

DDay profile image
DDay

I say I have ME

tulips123 profile image
tulips123

Depends on who's asking, generally a mix of the above.

cruz profile image
cruz in reply to tulips123

I agree, my family and friends know all about it as I asked them to read up on the internet as too hard to explain, its only when they see you struggling to move about that they get very concerned otherwise we try and forget about it because there is not a thing they can do to help which frustrates my daughters, but its the truth, no one can help!!!

tulips123 profile image
tulips123 in reply to cruz

My eldest daughter (age 28 next month) has recently had a spasm in her neck, caused her much pain. My nearest & dearest have been amazing, especially in recent years, but she said "Mum, how do you put up with this kind of "****"? I started getting spasms on a regular basis at a very young age but I couldn't tell her that. She knows that FMS has a variety of symptoms and varies in severity from person to person. I very much hope this is not a sign of things to come but I will keep an eye on her, she may not have any more problems, (I hope!!) If sufferers are to get an improvement in life quality and understanding from Society in general, Education is the only way to go!

Take care Tulip xx

Lizzy_G profile image
Lizzy_G

I also choose to describe my fibromyalgia as a pain disorder

kkkk profile image
kkkk

I describe it as central sensitisation and explain what that is. I also describe the symptoms (for me) as like having mild flu permanently. A lot of my friends do sport, so explaining it as like how you feel two days after overdoing it at the gym, but never recovering also helps them understand. For many women explaining it is like being heavily pregnant also helps.

cruz profile image
cruz in reply to kkkk

ah Yes, I say that too, its like you have had a very hard workout and your body aches all over the nexty day but ours is most days, good way to explain.

permanentgrowingpain profile image
permanentgrowingpain in reply to kkkk

yes thats my best way to explain

Just say its old age and a viral thing.

i say

have you ever overdone an exercise class???

well its like the pain on the day after

but all the time and worse

craftymummy profile image
craftymummy

I usually say its like chronic fatigue syndrome and chronic pain syndrome rolled into one! Or like ultra arthritis.

I too have stopped all but one of my medications as the side effects were nearly as bad as the symptoms! Now only taking meloxicam as it helps with the headaches, Everything else I can deal with!

jacquieraff profile image
jacquieraff

I've stopped talking about my fibro docs to anyone because as my husband told me, 'I can't take it anymore'. I hurt my left shoulder and arm (my neck is really bad on the left), when I called for some shots on the left side of my neck last Friday, the nurse told me the machine they use to see inside the neck was broken. So I took lots of drugs all weekend so I could sleep through the pain. When I wake up my husband tells me to eat something which I haven't done all weekend, I say no, I don't want to eat. Since my pain doc told me there's nothing he can do for me anymore, I figure maybe I can just starve myself to death or smoke myself to death because even my husband can't deal with me complaining anymore. I would like to take an overdose but I can't see how I can do that with him always in the house. The doctors in New Orleans are really bad, and they could care less if I stop breathing anyway because of all the pain meds I take. Two oncologists recently told me I'm on more pain meds than people dying of cancer, maybe because I'm in more pain than they are. I'm so drugged now that I can hardly see the page I'm typing on. Like my husband said, its time to move on, and that's what I'm doing.

Mdaisy profile image
Mdaisy in reply to jacquieraff

Hello Jacquieraff,

I am so sorry you feel this way, can you not see another Doctor? I appreciate this might be difficult in the USA and must admit I don't really know your system apart from usually needing Health Insurance. Is that right?

You mention your medications and by the sounds of what you saying they are mainly opiates maybe? Is that correct?

You may find this post interesting;

healthunlocked.com/fibroact...

Plus here's some information about medications recomended for Fibro;

healthunlocked.com/fibroact...

All the links have factsheets which may help you to discuss with a Doctor and all links of research can be found on website too.

I sincerely hope this helps as you sound like you need more appropriate pain control, over here we have Pain Clinics -maybe you could consider looking for a Doctor who is a specialist in Pain control if possible?

Best Wishes

Emma :)

FibroAction Administrator

jacquieraff profile image
jacquieraff in reply to Mdaisy

I go to a pain management group here. I'm taking morphine sulfate 15 mg, 3 x day; oxycodone 7.5 mg, 2 every four hours, because I hurt my left shoulder and arm trying to build a garden. Damn It! Everywhere I placed the shovel in the ground I hit all kinds of roots. I'm on too many other meds to count. I'm 57 years old now but I look healthy. I realize that if I didn't look healthy, people would take my illness more seriously. I guess I'm the usual chronic pain patient who feels guilty about not keeping my house as clean as I would like. Also, I'm not the type of person to do nothing. That, in and of itself, drives me crazy.

Carbootbabe profile image
Carbootbabe

I hate feeling like this every day

sandstone profile image
sandstone

i say I have fibro and say its like bad flu all time, similar to m.e

sandstone profile image
sandstone

Only one way I know how to earn money while laying down ( most of us normally are sleeping or resting)

Ii don't have enough energy for partner let alone others

unless your mum knows others? ...

Hope you all have little laugh at that no mallace intended

I have heard people call it the lazy persons disease...I'd swap any day

tonievans82 profile image
tonievans82

I don't share unless asked, but very few do. Most ask if I've had an accident. I just say I have fibromyalgia... I don't explain further.. People think I probably said something contagious and im left alone.... (I don't go out tbh, I have depression too... But regular faces ask as they're not used to seeing me with a walking stick

Bacaloca profile image
Bacaloca

I tell people I have fibromyalgia, I go on to try and explain what it is. I say it is like a very bad toothache in my entire body that never goes away, that it affects my sleep pattern, my thinking and memory. I cannot do the things I want to do because of the pain and because of the tiredness.

Elleanne profile image
Elleanne

I have just found out after seeing my GP for 4 yrs that she thought i had this. It hasnt been explained to me so I cant explain it to other people and those I have tried make me feel like I'm a hyperchondriac so I dont try anymore

Macberts profile image
Macberts

I haven't told anyone other than my husband, kids and mum and dad! They don't understand so I don't expect anyone else too!! Hell I am not sure I even understand lol

Those who really care when they ask I say to them Have you ever had serious tooth ache, have you cut your wisdom teeth? Imagine chewing steak on those sore teeth-my muscles feel like that all the time, they deflate quickly, sleeping is a nightmare because it causes legs to feel like someone has tied lead weights to them, I am constantly fatigued and weary. I might look well on te outside I,d swap with you anyday!

Lydia200 profile image
Lydia200

I say 'I have Fibromyalgia and it's an auto immune disease that has a strange reaction it hardens the muscles, and soft tissues, causing cramp and this hardening puts pressure on the spinal cord hence my migraines, leading to extreme tiredness and dropping-whatever-is-in-my-handiness.

seems to stop people telling me i'm depressed