I have had the symptoms of fibro for almost 30 yrs, but was only diagnosed this year.
I 've been finding the syndrome hard to explain to my family, and have given them leaflets to read etc - they are a good lot, but they still can't fully understand it. Saying that...I'm not really expecting them to - It's a mystery to me and I have it!! I'm just looking for more consideration and them accepting that sometimes I can't do things - just because they can't see my pain and fatigue doesn't mean it isn't there. I don't tell anyone else about my illness as I've not got the energy to keep explaining why my invisible illness comes and goes along with it's many horrible symptoms.
I know unfortinately this is a major issue for many others too, which is why this forum is a good place to be, but I was wondering how others get on explaining fibro? And what kind of reaction do you get?
Keep strong 💜
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Alltheflowers
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Hello there, yes I’ve actually said too outsiders what I’ve got and they say what ??? A lot of people still have not heard about this condition, I do just stick too having close family few friends now ,a lot easier, like you sometimes I have not got the energy 😂but yes the forum is good too have a chat, let off some steam sometimes x
Yes, I've had the same response a number of times where people have never heard of it. But neither had I until I was diagnosed and researched it! I tend to keep to close family now as I also find it easier to deal with.
For a relatively common condition it always amazes me how no-one has heard of it!! Which in turn makes it more difficult to live with and explain to others.
would your family join a forum such as this, just to see what others deal with? Although, there is also the aspect that you might not want you family to see what you are posting.
I've been fortunate that my family have mostly been really supportive and accepted that if I have to cancel our cannot do anything, it's because I'm ill not that I just don't want to do it
The spoon theory, love letter to normals are articles which can be googled to help family understand
I find family ok as we have difficult genetics which causes a range if conditions.
Fir work/others I often explain "I have medical memory problems" rather than just memory problems. This stops comments of "me too" and its just your age.
I have had good reactions asking for help. I am clear what I need.
🌻
afternoon hope your feeling well today. I just don’t tell anyone they think it’s a fake illness but having it thee isn’t anything fake about the horrendous pain just getting out of bed. One day can’t do anything but sleep another wide awake … I work full time from home so this does help on the bad days .
I could write pages & pages about myself, my experiences, the only conclusion ive personally found is after everything we go through, learning new things about this condition all the time, finding the strength or energy to not only tell others but to keep re telling them when they may think your having a good day and ask if your feeling better now, you know they don't get it, they may never understand unless they live with you, then theres no hiding, pretending, putting on a brave face, ive lost family members over this because they thought i was being unwelcome and sour towards them when they visited for 5 hours, pre planned, so think of 5 hours, think of the hours n hours of preparation before they came, the 3 hours sleep, the 3am start to take my medication, then 2 days later you receive a text message that says how i made them feel, it floored me, to this day ive no reply, i still cant find the words. ive lost count how many many many times ive tried to explain but if someone doesnt believe you because they saw you the other day and you looked ok to them or they've said, isnt that the one thats all in your head, theres just no reply to that is there, i said at the beginning i could write pages but wasn't going to, sorry about that, don't think ive been much help to you really, just moaning about my situation, some will understand, mostly though, the one person you can count on to be kind, thoughtful, considerate, is yourself, learn to understand yourself and be kind to her.
I can relate to this, my Aunt refuses to come to my house, because I asked her to give me notice before she arrives. After 2 years of no visits (my mum lives around the corner and she visits her) I had a difficult conversation with her, but even though I respectfully explained (again!) why I asked her to give me a few hours heads up, she still hasn't visited me since. I guess I could invite her, but I fail to see what I've done wrong by politely asking her to respect the fact that sometimes I'm really tired or in pain and need time to get up, tidy up or whatever.
Truthfully no one really gets it entirely except fellow sufferers and I have found even some of those, if they have it relatively mildly, don't relate either (no offence intended to anyone).
its so sad isnt it, weather its your kids, brothers/sisters, never ever thought id been in this situation, your right no one really gets it and i absolutely hate having to keep saying, todays not a good day, or my phone was on silent because i was tired and having a rest, find myself not being truthful because they wouldnt understand, even had someone say they had read that someome took this and now there cured, if im not even willing to research it i cant be in that much pain, all this on top of coping with the pain, from feeling beaten, aching, sore, stiff, beyond tired, thinking, sometimes i think its a good job i dont remember things and my brain doesn't work properly, so thank God for this site where others can relate so well.
Oh yeah, you'll have to come up with a strategy to get past the well meaning 'health networkers' who know someone's uncle's, cousin-twice-removed, father-in-laws' grandmother's niece, who also has Fibromyalgia and got better, completely cured don't you know - by boiling a rabbit's ear in milk taken from a female sheep that has never had it's fleece shorn, with some rosemary cut at twilight on the first day of a new moon with a sickle sharpened by a druid.
Thank you.. my first laugh of the day! I've had awful night, and miserable start to the day and then your fabulous post! I shall have to work out how to save it and then print it so I can show it to others.
I get what your saying about the call in advance thing - I also like people to let me know before they turn up - gives me time to sort myself out and see if I'm up to it.
I don't think that's a bad thing at all, if anything it's more respectful - as they could just turn up and you're so ill they have to make a swift exit!!
If I recall rightly, Winston Churchill called his depressions The Black Dog. We need something more descriptive and appropriate like that to call what we have. Fibromyalgia doesn't seem to mean anything to anyone really. Mostly I get ok reactions from people because most of them are ageing like me, have their own weird and complex health problems and already know someone who has things like chronic fatigue, or Parkinsons etc. The 'it's like flu that you never get over' is the best description I've heard. When my youngest started dating his now wife, I was glad that I understood immediately how it was for her having coped with chronic fatigue since having had the virus my brainfog won't let me remember right now. May you have remission! 🌺
Ah, the Black Dog! Interesting, because there's a brilliant set of books and also WHO-youtube videos called that "I had a black dog, his name was depression" youtu.be/XiCrniLQGYc.
Churchill did use the expression for sad times, but experts try to debunk that he is sposed to have suffered from major depression, or bipolar disorder as a myth. Looking at the arguments does convince me it is a myth: winstonchurchill.org/public...
That shows that using such a vivid image can just as easily lead to misunderstandings and misconceptions.
And fibro far more than depression is not only complicated but individual, like pain and fatigue is probably the main part, but what about insomnia, IBS? I spose fog could be subsumed to fatigue (brain fatigue). And I do use also use the flu image, but sometimes it fits more, sometimes less, it varies. My other main condition, MCAS, is just as complex, cos multi-organ, but praps easier to put in a nutshell: Oversensitivity to 100s of things. I usually call it "an immune system disease".
My wife used to say people wouldn't understand ('feel') it unless she called it "soft tissue rheumatism", however now she's gone over to calling it a pain syndrome. I vary between that and muscle disease. But that put together is then muscle pain disease, bringing us back to fibro-my-algia....
The Spoon "Theory" or I much prefer the "old battery" analogy really only explains fatigue, none of the rest.
I feel run over by a truck / bus / rhino / plane would be fairly close to the truth - if it weren't a cliché, that would make people say "Yeah, me too"...
Very effective for people who want to know my progress has been "stable at the lowest possible level"....
Another major way of getting people to understand are the many pics and memes for fibro and "invisible chronic pain sicknesses" - cos they're all not less complex. Some good ones of which we can find by searching this forum.
Thanks for the reply JC. The video was really great. I had a real big black Newfoundland dog once when my kids were young. Perhaps she stopped me developing fibro earlier than I might have because she was so loving. I did get depressions though even then though, perhaps from headaches and tiredness ruining things sometimes. Healthfooders I knew even way back used to talk about adrenal exhaustion a lot and I reckon there must be a connection with PTSD. I certainly had that after the stress I grew up trying to deal with. Not as bad as some but significant enough to throw me into brain fog long before ay diagnosis. - I studied the scramble for Africa doing history A levels and also read up about the Boer War, Mafeking and Churchill. Not as interesting as this article though. Such an interesting story there. Stuff like that was filtered out of the books I studied. - I would still tend to support the Black Dog thing as it is still possible that Churchill had PTSD and I am sure that in itself would have been enough to provoke episodes of deep depression. Soldiers basically want to have some experience of fighting and active service because even though the warrior type of personality can be highly extravert with a need for excitement, it still leaves a person empty but also on high alert at times with recurring nightmares. Winston also was a highly active guy and stayed up working till about two in the morning. This would avoid the wakefulness of the three o'clock, two hour nightmare phase - see refs to the Chinese Clock. - Evidently he went to bed for about two to three hours every afternoon in his bunker, changing into pyjamas to get himself into the right mood for a proper sleep. Indicates to me that he had found a way of coping with any nightmare problem. Clementine was very supportive to him too. Poor woman! Probably she should have been canonized for what she put up with from him! He obviously would have had much on his conscience though. He was not obviously a psychopath even though he was a Nob. I can't remember the name of the ship or which war it was offhand, but he did send a bunch of people on a civilian ship to their deaths as I recall for some strategical purpose without warning the Captain. To do with uboats possibly and needing to make a point bout the necessity for war. Hmm? Also Coventry he allowed to happen which was an unspeakable experience for the civilians there to keep it secret that they had craked the German security code at Bletchley. There's a play called 'One Night in November' by Alan Pollock about that that makes it clear why he allowed it to happen and that is in the history books too, so I guess Winnie's conscience could well have played a part in those depressions. He would probably have enjoyed the video. So graphic, it makes the experience very clear. I'm so glad that mental health issues like depression are being addressed now and in brilliant ways like the video. I remember such shame people were made to feel in the fifties and sixties when they had 'a breakdown.' So much stigma attached to it. I think the whole nation's war experiences took a while to come out and in the civilian population as well as the ex military. Everyone was supposed to just pick up from where they left off. I think the Royal Family did pretty well. The Queen didn't really get much of a break before she took on all those responsibilities. Didn't she do well! - Once again, thanks for your reply. Sorry about the delay of mine. Happy dreams and restful days!!!!!
Hi there. Just tell them that fribro isn’t all the difference illness throw in to a bag and then tipped out. Then this is what ur left with.
Then explain that u can look all the illness up and add all symptoms up together and this is what ur left with. The only other thing is that some days , even though u look ok it’s just because u hide it well.
U will do ur best to be normal ( as normal to how u was) but when u do normal every day things it’s more likely u will have numerous bad days to follow.
Only other thing u could tell ur kids if u have any, is that it’s something they could end up with.
I've found that describing my condition as having 'ongoing or recurrent flu symptoms' is generally understood, especially in this day and age of long-covid.
Most people have experienced these sort of symptoms at least once in their lives, so they can relate more easily.
I find it hard also to explain to others, but family and friends know I’m not well and have suffered for so long with so many health issues (join muscle pain, hot then cold, pain all over .The feeling I might be a hypochondriac to have so many things wrong. But these mood swings tiredness sleep problem are real. I Diagnosed myself and made an appointment to see my GP who for the first time looked at all the things that are wrong and have been wrong for many many years I’m nearly 70 . I now am able to say I have Fibromyalgia, my GP helps a lot now! And I say Fibromyalgia is like Arthritis , this explains it.
I always tell people. Imagine you have taken part in an exercise class, The first one in a very long time. Everyone around you seems to be keeping up without any difficulty, so you stretch yourself to keep up with them. After the class you are feeling pleased with yourself so go to the pub for a drink. You have maybe one too many drinks and go home to bed. When you get up in the morning your muscles are aching, some more than others and your head is playing up like it does when you have a hangover. This is what Fibromyalgia feels like
I tell people I have Fibromyalgia, that it's the same symptoms as MS but not degenerative! Most will understand its a chronic pain disorder and are understanding. Love and blessings to you all!🙏🏽
Does anyone wonder what causes fibromyalgia? I’ve had it suggested that it is the result of some sort of trauma. I had cancer treatment and it was after this, I began to suffer with fibromyalgia symptoms. It took 2 years of going to my GP before I was diagnosed with fibromyalgia. I had never heard of fibromyalgia beforehand. Maybe just coincidence.
Hi, yes - they say it can be caused by some kind of trauma, but there are other people that have been diagnosed that have had no trauma at all. The way the symptoms fluctuate from person to person also make it a very confusing illness to understand, even for us as sufferers! So explaining it can be difficult...
Hopefuly one day Penthouse13 we will get to the bottom of it all and it won't be such a mystery!
I wish you all the best with your health 💜
hi Alltheflowers, I was diagnosed about 25 years ago and nobody had he of it , I’ve got so fed up explaining what is making me ILL , I never say Fibromyalgia now, I simply hate that word, I say I have severe pain and fatigue , that’s it in a nutshell , people aren’t really interested in what we have to live with and will never understand, take care x
Hi Annie, I agree - although the word fibromyalgia has medical meaning (Fibro - fibrous tissue, my - muscles and algia meaning pain. When you say the word to most people it doesn't really explain much! I had to look it up! I'm with you and can see why you don't like the word - maybe they should come up with something a little more self explanatory! Keep strong 💜
yes its difficult. My wider family get about hidden conditions. Like depression etc. But they still don't get it fully especially grandparents etc. They dont see me struggle with things regularly, like my partner does.
When describing things to people i liken as much as i can to how it feels. Like i say it feels like im carrying a coupe of elephants on my back every day, so i get tired and exhausted easy. They get what that would feel like.
Pain wise i get hot pain most of the time. I say its like my bones are on fire.
Fibro fog wise i say its like information and memorys are hidden away from me or there something blocking it. Like jelly or something is making it difficult to get information in and information out if my head. I know its there, but i cant access it for example.
To be honest unless people have similar conditions they cant emphasise with you. I know someone with lupus and she gets me.
I have discovered 'long covid' is quite similar to some of the symptoms so i have said i get that plus more problems.
I also think some people just dont want to believe in fibro for whatever reason, some of them are doctors unfortunately.
I hope these suggestions help in describing symptoms 💜
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