How long approximately did it take yo... - Fibromyalgia Acti...
How long approximately did it take your family & friends to understand your diagnosis of Fibromyalgia & how it affects you daily?
Mdaisy405 VotersPlease select all that apply:
Sadly, they still don't really understand nor appreciate how it really affects me.
Unfortunately most of them still don’t understand! If only there was something that was like a thermometer which shows when you’re hot, for pain levels to show people you are really struggling with pain, ignorance is bliss apparently!
They still don’t
Ajay575 said our exact words
Neither my mother or my in laws get it fully. My MIL is ill at the moment and keeps saying she can only manage 1 activity a day. Well, welcome to my life and that’s on good days.
Some of my ‘family’ still don’t really understand. It actually caused a lot of issues
It causes murder in our house
Yeah I know they expect you to function normally it breaks my heart daily . They are selfish if they acknowledge there's something wrong they are scared they would actually have to help out.
Yes my lot can't understand why some days I can't do anything and very occasional days I feel not well but able to do a bit. My youngest son and daughter in law have stopped visiting. My daughter says she understands but then comes out with stupid comments. Sometimes despair of them. My husband just tends to ignore it although he now does all the shopping.
And for me too.
They still don't really understand but some of them try x
been ages and they still don't understand don't think my partner ever will
Sadly they don't "get it". OH tries but can't grasp the concept of being able to do something one day and not another.
That hits the nail on the head for me too! How can I feel so exhausted and in pain one day, yet the next day be going on an errand. It makes no sense to us either but it is what it is.
Do you ever fully understand someone else’s pain? 😰
i do. but i have always had a tendency to be able to put myself in others place and feel what they would be feeling. so i can take a good guess at it. and with the fibro i have it myself so i don't need to guess. i know it hurts- a lot.
My family have been very good they all looked it up on the Internet and thy support me and can tell when I am in pain or struggling
It took 3 yrs to diagnose my fibromyalgia I have had it 5 yrs now
Only now one sister understands after I snapped at her. A niece recently diagnosed and she commented it's only aches and n pain so I put her right that she is suffering just same as me
They still don't get it.
They still don’t.
Because they have never heard of I get no sympathy or support. It's as if I have never told them, so there is no empathy with regards to my well being. I live alone & can feel very isolated even though family live on my door step! Lady Gaga has revealed she too has FMA & I'm hoping this will make it better known & understood.
I can really relate to your statement, Flossyossy. I really do hope Gaga speaks out about it. I have just started following her on Twitter but since her diagnoses she hasn't said a word about it. She really is in a position to be the spokesperson for millions afflicted with this rotten condition. There is so much support and information on cancer, and though this is a very worthy cause, I would like to see a spotlight shone on Fibromyalgia for a change.
Here's an article on Gaga. She has done a documentary about how FMA affects her. It can be veiwed on Netflix. See link below ☺
This is another article about celebrities with FMA. See link below. Lets hope they start sharing their stories more loudly!
elitedaily.com/p/5-celebrit...
Many thanks for that ! Hope you're having a goodish day 
I am almost 10 years post diagnosis. I am still waiting.
It took 3 years of suffering before I was diagnosed I’ve had it 5 yrs now people just don’t know how bad of a illness this really is we need to keep on fighting until people fully understand how bad this can be
I dont know how other peeps feel but i find that family and friends dont really understand. I told th yesrs ago and have to keep reminding tjem ie i cant wslk as far or that fast anymore. Peeps look at you and think you look ok do you are ok.
It is frustrating at times. I was thinking about printing something off about fibro and handing it out. Why dont the go do a bit of research?. Sorry about the rant, deep breath lol. Hope everyone is as well as can be expected ☺ x
I've suffered since I was seven. Everyone accepted until I got married. Although my mother-in-law says she gets it odd little comments leads me to believe she doesn't really. She is the only one though
I have been extremely lucky! My family and close friends listened and I also showed them of a photo that was put up on Facebook! *IF YOU COULD SEE MY PAIN THIS IS WHAT YOU'D SEE*.....A very powerful picture!.....♥️♥️♥️♥️
Hi all, to be honest......no one really listens or understands. It's like a secret illness only I'm aware of it, the pain, tiredness plus coping with my other illnesses. GPs are not interested it's not really recognised and my other illnesses have taken priority, so I just grin and bare, I mention it and it's passed by.
You are so right. I find my family and friends don’t want to know....and my GP definitely is not the least bit interested. Everyone just thinks your making it up, there’s no empathy from anyone.
They still don't understand after 3 years. Although they are sympathetic, they think I should be doing more to become well.
yeah. i get the same kind of treatment from my family. so what are you doing to make it better? like i've got a broken leg or something. i can't seem to get them to understand i have a lifelong illness and i'll always be this way and i hate it.
After 20 years, they still do not understand. The only ones who try to are my daughter, and my friend. The rest of my family don't even bother to understand, just do not seem bothered.
Some raised their awareness quite quickly, whilst others still don't understand that it is around to stay and that there can be bad, good and a bit better days. Working is the worst....too many people to keep explaining how you can feel dreadful but look well.
My family does not seem to understand or want to at this point. They keep asking me what is wrong when I am having a flare-up or not feeling good on a particular day. It seems as though they really don't believe me.
I put 5 years plus but this only really applies to my mum and husband, I’ve lost friends who think I’m rude never going to things or leaving early.
diagnosed 3 months ago, 55 yrs old, I have a really hard physical outside all year job, been signed off for about 12 weeks now, wife and family don't have a clue, no understanding at all, and I'm sure never will, diagnosis been coming for maybe 15/20 years, finally got a reason for all the aches and pains, I'll be going back to work soon, and I couldn't be happier
I still don't think they do. I feel like a fraud, my G.P treats me like a fraud, so I don't really volunteer information.
I know exactly how you feel and the UK 🇬🇧Benefits system doesn’t want to know or care unless we are dying from it and only have a few months to live. They just won’t or don’t want to understand it is a life long problem for us however long we survive for
I know what you mean about the benefits system but to be fair I have read about people who had cancer being told they were fit to work only to die a few months later. The benefit system doesn't care about anyone, if they can cut your benefits they will as they did with me. Gentle hugs to everyone.
I've suffered this affliction for 20yrs.its the cruelist of the cruel.it takes part of your life and you have to fight through many sites of pain everyday .every hour your body fights different sites of pain .it dosent care which part of your body it affects at any o e time. its not just pain its sheer torture on a daily basis.I would not wish this cruelty on anyyone and there is no cure its a life sentance .
my Dr described it as such when she was doing investigations. she didn't want to diagnose me as she said it's like giving me a life sentence and she was not kidding. i feel like i'm glad i know what is causing all the trouble. but it's still a daily struggle to do anything.
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most of my friends n family jus cannot understand wat im going thru which is so very frustrating 😕😕
it's been 2 years now, and they still don't understand
They don’t I’m getting there. Been over a year now
After 20+years they still don't understand!
After 24 years they still don't understand
I don’t think everyone will understand ever - I have had ME/CFS since 1990
They never have understood how it feels.
I am still waiting for my family to understand. My youngest Son 18 understands a little or at least tries to. But the other two 27 & 25 and other family members don't understand what I go though.
I'm still waiting for all but one friend to have any sort of understanding.
They were all understanding when I was diagnosed, that's not to say they "get it" as it's hard to get what you can't see.My first symptoms were depression and anxiety and those are two symptoms that are obvious when someone is normally ...happy go lucky.These two are daily issues. Peck 🐤
I was diagnosed with Fibromyalgia about three years ago, but even now, most of the people I still see don't understand what it is and how it affects me. I do try to explain why, when I have to cancel plans at the last minute, or the effects I feel with the CFS, or me not being able to sleep, even when I'm desperate. I'm sure they think I put it on, but I really don't. Who would want to feel like this? I have a number of other so called invisible illnesses, but when you look ok on the outside, nobody understands that really, you are feeling pants. I've lost friends that I've had for years and years, but slowly they drift away. I find it all very isolating.
Been ill a very long time , my family still dont undertsand , they never will now its been such a long time .. Life goes on
They still dont and ive had it for 13 years 😭
They don't really understand at all, which is bloody annoying! My hubby is really good, something for which I'm really thankful.
Ah ok thanks. I have osteo arthritis in various joints, luckily tested negative for rheumatoid
I try to hide the pain and they still dont understand how it affects me .
I don’t think they ever will. I just gave up trying. I just crack on with it as best I can. But it’s hard not having someone to support you. It’s a very lonely condition.
Unless you have it, I don't think anyone can understand. Because it's unseen they forget I still live with it.
Unfortunately, even my closest and dearest family and friends are STILL trying to get their heads around it.
I don't blame them at all because I'm still 'learning' myself!!!!
Soooooo Frustrating.
Some of my family and relatives have understood but only since I recently re-married (14/10/17) have others begun to understand thanks to my lovely wife who has understood - maybe her understanding has helped some of my family and friends/relatives understand and appreciate what I go through
Some still don't understand how painful fibro is.
They still don’t get it.......
They don't understand, most of my family are non empathetic and are very self centred, they only really think about themselves. The only one that understands is my sister who has ME.
i honestly don't think that my family or friends truly realise the pain that i go through daily.
the only person that i would say TRULY understands would be my husband as he sees me cycle through the various stages of pain. from ouch to ... ************ ouch lol (censored) to (lots of censored words where i'm in so much pain) lol
They still don't listen or understand after two years
Mine still don't understand but then I'm getting new symptoms so I'm still learning also.
Tbh, my husband still does not get it. It does not help that he's on the Asperger's/ASD spectrum. I was diagnosed more than a year ago.
Mine don't understnd at all xx
Most probably don't and I don't expect them to understand...some do try
... They still don't, not really ...
I don't think my family fully understand. Even if I ask for help I often get comments like "it's not even heavy" from my son...maybe that should tell you something if im having to reaort to asking for help with it sunshine. Or "well I get tired too", from my teenage daughter or just a roll of eyes and ignored when I try to explain to my husband. I don't tend to bother telling other people it's pointless.
Some of them still don't understand and when they ask how I am n I say I'm having a bad day got flare up they still say what's that😠😠🙈
Mostly, it is still misunderstood. It has no visible signs.
Still waiting!
My husband understand but my other family members and certain friends still don't understand how the illness effects me even after 19 years
I have no close family now apart from hubby & he is wonderful. The rest don’t know how it affects me as they aren’t really interested! Families eh?
Others in my lift do understand I have this illness. but it can become a matter of fact and let's not talk about it again. I was told once it's not only the patience that suffers from this but the partners and others as well because they watching there love ones change due to pain or changes in there appearance or moods. If someone in the family have an illness everyone round that person will see the symptoms.
Not everyone understands! I had a friend tell me about another mutual friend, saying “ Well she’s not like you, she’s really ill, you can see it in her face!”
They still don't understand even after more than 10 years.
My family saw mt symptoms as they occurred and understood how much pain I was in and ill I was
They don't understand
My son told me I had it 14 years ago...but only one friend seems to accept it. Needless to say, I have one friend and one son.
My ex never understood. Full stop.
Hi I've been diagnosed 2 years now but being fighting for a diagnosis of some description for my illness for over 5 year's now I'm 47. I work and am on my feet all day my doctor has even written to say i should work alternative days but my manager never does she just says we all have aches and pains. My kid's 25 and 26 expect me to do everything because i 'only' work 4 day's a week, and my mam who is 70 and has way more energy than me expects me to visit her on my days off. Sorry rant over xx
I have had ME and probably fibromyalgia for over 30 years, and no one really understood what I was going through. My brother has recently been diagnosed with it, and he now understands, but my grown up children didn't. I recently sent them a video of jennifer Brae describing her life with ME, and also a video of a fibromyalgia sufferer doing the same, and they have become strangely quiet!!!
My daughter understood before I was even diagnosed and accompanied me to the diagnosis visit with a chart and helped me describe my symptoms. My husband is a lot less frustrated now he knows I have a condition and why I struggle like I do. Friends are very different - some ignore that I have it, others are great and understanding.
I don't think they will ever fully understand.
I feel people don't believe it's real
It's been over 8 years and my in-laws and many friends don't understand.
Still don't really after 7 years will help when I ask but not if I don't I get fed up of asking for help.This is the worst part of being ill the constant fatigue and pain and having to ask for help
Still waiting for them to understand. It is extremely frustrating. My daughter who had ME is the only one who has an inkling.
As we dispute the diagnosis, in many ways it doesn’t fit, most of my family and friends have no idea that I was given this diagnosis following a few minutes conversation with a complete stranger.
Majority of family think I exaggerate. Have no idea what Fibro is. Try to explain and they just switch off. Think I just have back problems. Mind you Karma has given the worst offender severe back problems now.
They never understand your condition
They dont understand
My husband understands some of it, but my family live further a field so don't see them that often so they don't realise how it effects me.
My family are amazing and fully understand what I go through and help me as much as I need them to feel totally blessed
Most have no idea. Many aren’t interested
They still don't, it's so difficult to understand it ourselves as well so can't blame them not understanding
I only have my hubby and my son. I am not sure they really understand it. But excepted with out question right from the day I was diagnose I was suffering. And never questioned that I have a disability. I have been Lucky.
They haven't got a clue. They look at me with a glazed expression and I don't bother saying anymore. No one is interested.
They still don’t understand
dont think they really ever understand say they do but stand and watch me still do stuff without considering im in pain ie loading the dishwasher hanging out washing just doing stuff . son is worst offender . one friend does help but others seem to forget .we all need connected to a horn that goes of when we do something and pain is the instant result lol like they have on tv shows when the wrong answer is given can remember which show lol .
think we all need a badge that says i suffer from invisible pain .
must get one printed up and see what response i get . but it willbe the size of a saucer for the blind and scathing individuals who are at times so hurtful with there snide comments like your always ill/complaining walking weird /cant keep up with me /so doh and slow .your many illnesses. hypochondric?why dont you just take more exercise and it will go away?etc youve heard it all .. ok going to design something lol if my brain cells will work
5 years on & I still don't think they grasp it, esp the exhaustion/fatigue aspect.
Sadly I don't think they will ever truly appreciate the daily pain and struggle I go through
Mine still haven’t after about 5/8 years. Still think it’s stuff I can control.
Everyday is a learning experience for us. As they don’t suffer from it and just observe my pain and the visible symptoms that they can see - I don’t think anyone unless suffering with the illness can completely understand. My partner said he thinks if it was him who had fibro and m.e he’d have tried to kill himself by now. He doesn’t know where we get the strength from to get through each day in a flare up XX
It's too hard to explain and understand so I've never said much. They just think I'm tired all the time - which I am.
I don't expect anyone to ever really understand. I mean, really, how can they possibly understand? Some people try really hard to understand and do a great job even though they don't completely get it. Others are completely obnoxious and rude, and will never ever get it. This is especially if they've never gone through any health problems anywhere close to min. This understanding, or lack there of, goes both ways with me not understanding people with heath conditions that I have not experienced. I will not ever fully understand them either. However, I will always have compassion and support for others, no matter what they are going through. Not everyone has these same traits.
My Mam and Dad and my partner understand, but other family members and friends either don't understand or just don't care as they are too self focused to notice anything else going on in the family.
Iv had fibro now for 8 years, family, friends still dont get it ! I just live my life to suit me now at my pace x
I am not sure that anyone understands my fibro. |They understand when i am suffering pneumonia,but fibro i am not so sure.xx
I have never discussed it with friends or family. They all know I'm in pain all the time and also have spinal issues so no need to add more!
They still don't understand it and I've had fibro for nearly 20 years. I get the feeling they think I'm a hypochondriac.
I get the sympathy sometimes when I am unable to move, but nobody understands really---'cause you look so well' is the usual comment!
They have no idea of what is going on 'inside' !
Still dont
Hi again! I don't think anyone truly understands the impact of this on your body even the medical professional are at a loss not knowing how to best treat you .I personally have had so much medication thrown at me which as caused more problems.sohow canyour loved ones get there head around what's going on.when you say you have fibromyalgia people say what's that then when you explained your absolutely exhausted so why bother.so just say Fibro the tissue. Mys the muscle And algia the pain hence FIBROMYALGIA
I don't think anyone gets it... Unless they have some other chronic pain condition.. X
I have had fibro about 9 yrs. My family still dont understand about the pain it causes the chronic fatigue . They think im just being lazy. They are also the same with their sister (my daughter) who has ms.
I still have friends who don't believe there really is anything wrong with me. Most of family members understand it,though.
After 30+ yrs family or friends never did understand, like a lot of people thought it was in my head!!
family within a few months some friends and relations still do not understand what my illness is and how it affects me on a daily basis
I was diagnosed 17years ago after five years attending hospital seeing different consultants before getting my diagnosis because they cant see what's wrong with you they don't understand if you had a plaster cast on they would sympathise with you it really gets me down at times when they just don't realise how much you are suffering
My family and friends still don't really understand my condition and how it affects me.
My family still don’t fully understand only what they have seen ie me in pain but unless u have it I don’t think anyone will understand the illness
I don't have anyone who accepts it and understands ...
Still dont
my daughter has MS and is fine. As to the rest - I don't have the energy for the fight
Hi, I'm new here.
I voted "other" because I don't think anyone understands even now! I've been diagnosed over 10 years, had it much longer, and I'm still having to explain why I'm wiped out or why something hurts, even to my husband! His lack of empathy drives me to tears many times.
Does irrational sweating bother many of you? Not necessarily heat induced though overheating is a huge problem. But, cold sweats or after the lukewarm shower sweats, or hot and sweaty top half with freezing cold leg bones.... I could go on forever😰
Hello joynjoy, I went through a year of sweating at night, I'm sure there are topics in the forum, so you aren't alone! Mine was waking up over heating or waking up freezing cos my night clothes were soaking went with sweat. It seems to have stopped now. Strange as there was no obvious reason for it and nothing has changed.
Hi, yes, hot sweats but cold lower leg bones which feel worse when legs are up. Jill
There isn't one person within my circle of family and friends, who really understands what's going on with me or the issues I have to deal with. To be honest they seem to be completely blind to my suffering, even when I obviously look like I'm in serious pain. So I have given up! Sx
they still don't understand 6 years down the line
Family and friends do not understand at all. They do not get it. My husband is the only one that understands.
I try and explain but then I see their faces and I know they do not get it. I feel that I am making this all up and it is in my head
My family is wide flung so communication about Fibro was not quick
I dont think they will ever know,most are too selfish or busy to take the time,the ones that really love you will research and find anything that will help,be it medications,aids,support or any other way to provide comfort to those suffering.
Not much will change without education and support from those in high places,we need more help from high profile sources and less interferance from such as Edited by Admin
Sadly they don't understand and most of them don't even try to.
They still haven't. When even your dr rolls their eyes when you get a diagnosis of fibro then how can family understand.
I've was diagnosed a little more than a year ago, they still have no idea what I go through on a daily bases.
I don't think anyone can really empathise unless they suffer in the same way but I wouldn't wish it on anyone.
Still not. Mother in law keeps slipping my husband newspaper cuttings about 'self-diagnosed hypochondriacs' and my former best friend told me recently that she always thought if I stopped thinking about 'it', 'it' would go away...
Alas, they also think my hashimoto's, coeliac, pituitary adenoma and hypoadrenalism are not real, so after 15 years I've given up trying to explain.
both of my sister in laws think its all in my head my brothers think the same and my mum and dad are supportive xx
I was really lucky in that I had support from my husband and parents from day 1. My mum has suffered from me since I was 15 .. so she never doubted me when I was having similar chronic fatigue symptoms.
Other family members took longer to really understand ...some within 1-2 years others a few years longer.
I lost friends over the years due to them not understanding however I have also made new friends who completely understand and accept how i am now xxx
I lost several due to comments they made that I just got fed up hearing or they walked out of my life after making negative comments several times. Family usually ignored the issue until recently when they have expressed concern, but it is easier to ignore as I live on another continent and haven't seen them since before I became so severely ill. Some former friends asked relatives of theirs about it and were told negative things such as it's a wastebasket diagnosis. They believed the 'professionals' over me. I am happier not having to deal with this. I made online friends who made an effort to find good articles and to believe what I told them, and it was harder for them, as they are not fluent in English. This illness is stressful enough without being constantly doubted or put down by people who are supposed to care. I feel very sad for all whose loved ones don't support them.
its been years and my family still don't get it!!
thank goodness my friends are more like family now.
I am 50 next week and was diagnosed at 24 (25 years) and I still think it is hard for them to understand.
Looking down other people’s replies we all seem to agree !!!
I’ve has EDS all my life but wasn’t diagnosed till 7 years ago. I managed my symptoms and suffered in silence because I didn’t want to be seen as different! I was diagnosed with Fibromyalgia over a year. I developed it after the birth of 3rd son nearly 3 yrs ago.
I find it impossible to manage my fibromyalgia. The condition controls my life! My family, friends and the father of my children don’t understand and get frustrated.
I do understand how it is difficult to understand this invisible inconsistent condition!
I have got very depressed at times from people’s lack of understanding. However, after a mini breakdown .... I have decided I will not toilerate anyone in my life who does show some element of understanding, especially if I have taken the time to open up and share how difficult my life is on a day to day basis.
My life is hard enough! this condition causes enough negative thoughts about myself. I need to be surrounded with people that lift me up, that understand and have empathy.
I have lost friends and my relationship with the father of my children. But I feel stronger for having boundaries and self worth.
I battle with fibromyalgia everyday. I should not have to battle for understanding and empathy from those close to me 🌞
Totally agree, you need to be surrounded by suportive not negative people, i left my partner of 20 years for this reason and avoid toxic people completely. All the best
Worked until I could work no more, yet there are still many who think that I am exaggerating the facts. I am 57yrs old
Diagnosed 2007. Am 61. Mum is 85 & brother is 58. Brother, this year, said to Mum that he thought " I was okay now." Mum really does try to understand, bless her, but it becomes a bit of a competition as she compares her aches and pains to mine. Brother lives over 200 miles away and I'm Mums Primary Carer. He visits twice a year for 3-4 days! Yes! 8 days a year at the most! Gives me weird looks if I'm not coping. Fibro is bad enough but I also have C-PTSD, Osteo-Arthritis, Osteopenia, Cervical Spondylosis and Hypothyroidism. Maybe this confuses them and, really, I'm Superwoman and just pretending be ill! ( Sorry for the rant! )
Nobody understands it. It’s really sad because nobody will read up about the disease and all it’s associated problems and believe in its complexity, especially doctors!
The trouble is that I still don't understand this debilitating illness...so how can others?
I keep thinking there must be another diagnosis for all these symptoms,I can't accept it myself and I know it sounds terrible but I keep hoping that I have M.S or anything else that people would recognise and I could have support with. It's SO depressing,I just don't understand it.
The time it took varied greatly my hubby was a great support immediately, researching on the internet etc. My adult children took a wee bit longer and that was probably my fault as much as anyone as I tried to carry on as usual as much as possible but now they understand and are most supportive. Friends took the longest and I must admit some still don't understand fully but we're getting there. I have always been an active person running football teams and on numerous committees so when friends and family who I haven't seen for a long time meet up it can be a bit of a shock. Everyone is different but I believe strongly in the fact that if they can't accept and understand then it's their loss. Warm thoughts to my fellow sufferers - Elaine 😌👍🏼
Never have accepted it or will
The only person in my family who has a CLUE is my daughter, who has been diagnosed since her late teens. I find that, at least in my family, the lack of visible symptoms hinders the ability to understand the toll this syndrome has on an individual's life. One reason why I so APPRECIATE THIS FORUM!:)) You all understand and encourage bc you have experienced it. P.S. Family loves me; they just don't 'get it'.
Gentle Hug to All!
I really don't think my family has a clue. One friend who has been recently suffering with hip and back problems and is daily in a lot of pain says she could not comprehend until she was in terrible pain herself....even though the pain is different.
even the drs dont have any empathy wish they had it for a week then they would understand.people say you look well ha ha i wish
ive had it for 13 years.had every test possible i said to dr you dnt think its fibromyalgia my sister has it his reply you dnt want that its painfull i said this is painfull.i also have thyroid,arthritis in my heels,ostio arthritis in my hands and lumbar spine.then people say you look well.am worse now paying to see a neurologist see what he says am sick of it dont get a minuites respite something gone wrong or meds dont work anymore
Some of them still don't get it after 18 years.
Nobody really understands how you feel my son can't understand why I don't want to go out at night I think he thinks I'm just been soft but I wouldn't wish it. On my worst enemy, been in constant pain 24hours a day, someone once told me it wasn't life threatening but it was life changing, how true it's a life sentence to pain. Gail99
Sadly 7 years on & half think I'm just lazy - half don't understand fibromyalgia & think I can do more or cure it (saw rubbish in a magazine) by eating better etc. Basically don't believe me. My husband has it now also & the family just ignore the fact he's I'll or think he's a wimp after always admiring him before.
Help please, raised ESR 39 now told I have Polymyalgia I already have ME/CFS start Steroids today and so it goes on. Does raised ASR diagnose Polymyalgia is is it guess work? Thank you
When I was diagnosed 2015, the only thing my mother said was ''so it's not terminal then''...and has never asked me about it since. I've since had another diagnosis of Hypermobility Spectrum Disorder and people just assume that just means it's easier for me to do the splits. Rarely do I find anyone who understands either condition. That includes medical professionals too.
My Partner, Family and close friends have been really good, the only thing I think they find hard is that it can change day by day or even morning to the afternoon. I just feel that they can see I'm OK ish one day then really bad again and I wonder if they think I'm a fraud. Or is it just me thinking this and they just don't know what to say or do. It's not a gd day today.
I have had Fibromyalgia for over 20 years, my family and most friends are not interested whatsoever and don't really believe there's anything wrong with me......that said, I'm also recovering from breast cancer and have endured a mastectomy but I didn't have any chemo or radiotherapy as my surgeon felt the risk for recurrence was low and it would only add more pain to my Fibromyalgia symptoms. Opinion amongst family members is that if I didn't have chemotherapy then my cancer couldn't have been that bad.....bad enough to remove my breast, but obviously not that bad!!!!!! Needless to say, I don't think I'm going to get any 'empathy' from them any time soon....do You?
None of my friends and family really appreciate how this disability affects me! And unless they are unfortunate to contract it themselves I don't think they ever will!
Ive had it for 9 years and alot of my family and friend still don't get it.
I don’t think they will really ever understand. They still say stupid things like you need to get out more or just put it out of your mind 😑
They still do not understand, I think it's because I do not look ill.
Sadly they don't seem to understand and don't really want me talking about it, either, so I don't..... just bottle it up ........
