So has anyone watched the documentary on BBC1 about this? Over the last 2 years since I've become ill i've found that friends seem to drift when you don't have the energy to do things you previously did.
Does anyone else feel lonely?
I know this is something that most people won't admit to but be brave guys 
Yes, I know exactly what you mean. Me too it's really awful..
It is and it's really the hardest thing to admit to... But I think it's really hard to meet new friends who understand you can't go clubbing, go out for meals ect sometimes...
People don't understand this, and it's so hard to try and explain it to them. I'm glad for these forums as at least we have each other even though we may be oceans apart. If I can help in any way, please let me know, if nothing else then just knowing someone understands. I hope all the best for you, love Anita X
Thank you very much I think these forums are great, it's good to vent! I'm lucky enough to have a very supportive partner but it's nice to come on here and know it's not just you and others are in the same boat and help
Likewise, if you ever need a chat, don't hesitate to reach out! X
Thanks so much Robyn, I'm glad you have a supportive partner, so do I so we are fortunate in that respect! Hope you have a good day (or night depending on where you live!)
Yes, I agree with you. Initially, upon diagnosis everybody's kind of the same as they always were. Then slowly people call a little less often, a little less interested in really hearing how you are...when they ask how you feel ,next time they may ask a few less questions about you and want to wrap it all up really quick because they know that there are not a lot of solutions and when asked by them your plans for weekend... the things you may say seem lame...I think they feel bad for their plans sounding so fun,so they stop asking over time. What they don't seem to understand is that we still want to hear about their life. The fact that they care to include us makes us feel important and enough fir them to choose to have us for their friend... to be included in the circle of information that they haveto share. When, for example, I say that I don't have much planned, just gonna see how things go (translates to "I don't have any plans that would be of interest to you and would make you feel bad for me...so not gonna say so'") How do I know that? Because of the last time they asked. They acted odd, not weird like the time before....but odd. Then they starting calling less and now when they do pick up when I call it call me...they don't ask me much anymore about plans or my world cuz when I have planned something with them in the past, I've cancelled at least 1/3-1/2 of the times because of Fibromyalgia") To those friends, they think I dont care or Im unreliable for any plans involving me on the weekends. I think it makes them a little uncomfortable, that just hanging out ...watching a movie or chatting,in person...is about as big as it gets for us most if the time...and I think when people are uncomfortable they often begin to avoid us to some degree...not including us in things involving committments from me in advance. Even my " real " friends can't really handle the truth of my daily struggles, unless I buffer my imput of my life with minimization,joking and choosing not saying much at all ...which is done through deflection, asking you about your life with lots of questions of you to avod focusing on me....because I have already learned, that people don't stick around...and I don't want to lose you too! Yes,I might have some better days and I dont, necessarily ,get better...I know things change in dynamics of my personal relationships with family and friends.... with me things are powerless to a large degree and with our family and friends....apparently we are too...cuz if it was up to us we would rather you call us,not out of obligation,but out of wanting to connect with us. We can tell the difference when we you are "over us" on the phone. Does that make sense? So, I know that fibromyalgia affects me physically,emotionally and my relationships. It changes everything and it is life altering and it is life affecting. So unfortunately,sometimes hanging on to the old us has to go too...because she doesn't exist anymore...that apparently not only sucks for me but for my loved ones too. So yes, it gets lonely. I miss the woman I was,the friends I thought I had,the family that was there for me. Fibromyalgia is the reason I do things the way I do now and it's also the reason I don't do things as well as I use to. JUST IN CASE YOU WANT TO KNOW : I HAVE NOT CHANGED WHO I AM AT ANY GIVEN DAY OR HOUR...Fibro has THOUGH. So, yes I think,unless we pretend or put on a good face FOR most FOLKS...lots of folks struggle with our company.. Which leaves us with plenty of time to realize we need to be careful who we let in our circle...choose differently who we are vulnerable with and breaking up the interaction...when they decide its time to call...all over the course of our new normal and unfortunately and also honestly...how ee have to do things now versus how it was before probably doesn't make sense to anybody and I think the fact that they're uncomfortable makes it easier for people not to talk to you because they feel bad and they don't know what to say. That's what led me to find some other people that offered me some support and then I felt like they would understand without having to explain in addendum or feel like I'm making someone uncomfortable. Everybody always says they hope you feel better and the truth of the matter is I always hope that I FEEL THE BEST I CAN. I hope I feel understood a bit today. I truly think that people do not understand that there is not a better, at least at this time. And also I do think that I have become a shadow of the person I used to be, I also think that I work really hard to keep my head above water, have a great attitude and be positive. And every once in a while I find myself feeling a little low, and since I'm so adept at putting on a good face and a good front, to the best of my ability...when I am feeling a little emotionally low or may not feel like talking much or at all, because of how much I ohysically hurt...I find that the people I need to count on to talk in through and help me get through this mental junk...cant help me a little bit because it often turns it into how they feel about me not being up for them because of how I feel emotionally or physically. Jyst go out,gey some fresh air.. You know.I don't know for sure, but I think that people get discouraged with us because they don't want to have to end up being like us one day. I'm kind of rambling here and I don't know if I'm making sense or not but I think that it's like the flu...you keep up with the person who goes through a flu illness because the person with the flu gets better. Someone breaking their arm... gets a cast,maybe gets physical therapy down the road... And then they get better. When someone has gotten fired from from a job or theirgirlfriend left them or their wife is seeing another man behind their back... The friends go the distance in tjose circumstances cuz evetone knows that eventually a "new nirmal" that will come to be seen...eventually....they all get better! With Fibromyalgia. Its not like that. You can change from one hour to the next, one week to the next,one month to the next...things can get worse for a really long time, get a little better, get way worse, become a lityle improved...a bit better but their is not a "new nirmal where we get better. We can become a better version of ourselves...mentally,emotionally,
physically but, unlikely do we get better. Others serm to want a " new nirmsl" but not yhe tyoe of Fibromyalgua "new normal" that we have....our new normal is not "All better"... It might just be better than we were. at all and if there's an hour a day that you feel like you can get out of the house even though it's a struggle and that's a good day. Unfortunately I don't know if I don't hear you all but I don't have a day that I feel better. I have a day that I am the best version of myself that I think a lot of people that formerly kept in contact with me would agree if something that they never want to be, because it is awful it is uncomfortable and it's a horrible existence on some days. That answer your question is "yes"... I think that I get lonely. I also think having fibromyalgia is a work in progress... kind of like the weather in the respect to how things are ever changing...some beyond our control, like a flare up and some we can plan for like outings and extra work... But there's never truly a better with fibromyalgia, it's a work in progress, sometimes it is good enough, sometimes it's just getting by,sometimes it's... I've had enough and occasionally, there's is a ...Im okay or a good...but even then,its said for them,not me and it doesn't mean that I am better, it just means that we're not so bad. So, the answer is Yes, can be lonely.... this fibromyalgia things and living in my own skin and who I am is exhausting for me... that makes sense but it exhausting and cause discomfort for others.
Your spot on Katherineanne, that's exactly how it is. My thoughts exactly I just didn't have the energy to type it so thank you for doing that!
You are very sweet to thank me, but I too, understand how lovely it is to read others thoughts and feelings and finally feel understood. I am sorry your energy so low today,that is a constant struggle for me too. If you could see the condition if my home...it is a little (quite a bit actually) chaotic looking. Right before Christmas I had a bit if gumption, so I decided to pull some things out move some stuff around to get organized. You know what's coming next, right? Yes, that night my pain went up and my energy level plummitted. I wasn't on top of things,as I prefer to begin with anyway...now, this conundrum of my own doing...has caused me to want noone to come to my door... Because it looks like I'm a hoarder with all out of closets, trunks and cabinets...as it was over a month ago...don't know when,its become overwhelming. So I'm glad to hear I have a "sister" in thinking on this and if your fatigue and energy is anything,as the condition of my home appears which is very low...off the charts...then,we are absolutely in good company! I'm hoping for you soon to have some relief so that you look forward a bit with potential energy. If I get any sooner than you,I will surely send some your way.
Katherine
Well we are very much the same then. My home also is in chaos so to speak, before I got sick I used to keep it so tidy and clean but now, anything I do I have to pay for the next day. I was saying to my husband only yesterday, that this illness is like a credit card. If we "buy now", we have to "pay later". We may want to do something like go out or clean the house, even just grocery shopping, but we know that whatever it is we choose, we must pay for. This is something healthy people don't understand, our lives become a balancing act and sometimes, that balance is way off. I wish the very best for you Katherine, it's so lovely to "meet" you. Love Anita xx
I agree and your credit card analogy is wonderful...I'm going to use...it says so much it so few words. It is also nice to meet you and a kindred spirit in thought.
Katherine
It's such an accurate description of this isn't it! "Buy now, pay later", and in doing that we really do pay too dearly at times. It takes time to learn our limitations but when we do, I think it's vital to work within the boundaries of those limitations to protect ourselves, so we don't crash and burn because then we're not good for ourselves or others that we love and who love us. It's a fine line, but once we find it, life is just that little bit easier xx
Your right. I'm going to work on actively doing better with that... because I often forsake my needs for the better good...but often realize...too late, how I end up feeling is not worth it to any of us in my family. Your a smart cookie! Thanks.
Katherine
Katherine, I did it for years. I've always put myself "at the end of the que" but I just can't do that anymore as I won't be available to my family if I don't take some care of myself now. This is obviously hard for our personality types, but we have to learn it for the greater good of our families xx
Yes...I agree 100%. Easier said than done ,after years of doing opposite...but I will be a work in progress til' I arrive.... (May be a long while then ...time and perseverance will hopefully guide the wY fir me and all,who need to do the same. Thank you!
Katherineanne, I think you've summed it up perfectly! It does make you feel very isolated after a while, I find when in work and everyone talking about what they've done at the weekend and then they ask you what you've done. This might just be me, but I often end up keeping it vague because I don't want to say the highlifht of my weekend was managing to go food shopping and I basically spend the time recovering and resting due to this horrible illness. It is embarrassing and you worry people think your strange because you don't do anything. Yet even when they know healtwise your not okay it's often brushed over and when asked you say your fine because you know they don't really want to know how your really feeling. I think personally I need to get out more and meet people but it is hard to make plans when you don't know how your going to feel that day or if your going to have a fare up...
Sorry about the rant! X
Anita,
Its almost 3 in the morning here and I really should be sleeping as up soon for work but it's not happening! Haha Hope you have a good day/night x
Yes, I too agree with your thoughts. Perfectly stated. Your post was the concise version of my way too long post/vent. Lol. See we can read each others minds/thoughts. You are up late. I'm in US...only 9:45pm. Hope you have a restful night when you are able. Thanks for your postings!
I sincerely hope that you are feeling as well as you possibly can be today? I must that I did not see this programme as I had people around for the evening. However, if you or any member is feeling lonely then there are Fibro groups that you could join and meet up with like minded folk?
I have pasted a link to the FMA UK listings for Fibro groups, hopefully there is one there suitable for you:
fmauk.org/contactsmenu/supp...
I want to genuinely and sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
I can't add much except to agree with what others have written. FMS is lonely and isolating, and it hurts when you lose friends because of it -- I have lost several. My fibro started when I was about 50, and the only thing I noticed that was helpful was that as my friends got older, they could relate more because they developed health problems too. It is truly awful for younger people when others in their age group can do so much and they can't.
This made me cry and feel really sad 
I am in my 20s and I feel like this sometimes. My life has fallen apart.
Huge (((hugs))) Im in my 20's too. You are not alone xx
Meloha, I too am a bit older (well older than in my twenties) and I know what you mean when you say as friends get older they are a bit more understanding as they have their own health issues. I too feel for these girls who have been struck way too early in their twenties. It's a horrible illness that is mostly misunderstood. I hope you are doing OK, love Anita X
I know exactly how you feel, Robynl91. Before I became ill, I used to be involved in politics, go to university, have a big social life, go out every weekend. I think I pushed myself too far but in any case I became too ill. Some of my friends stuck by me, but I noticed more and more when people asked "are you feeling better now", I had to say "well kinda but not really, it's ups and downs", and that's not what people want to hear. and so people drift apart. It makes me so sad because this is the time, more than ever, that I need people. And because I'm
In my 20s, all my friends are so active, Doing sports, all planning big holidays together, going clubbing and to bars every weekend, going to meals and socials, just everything... And I am lucky if I can last a day with walking to toilet and back without pain. Some of my friends are lovely and see me sometimes and keep in touch but most don't. It makes me so sad and makes me feel like giving up so many times.
I'm so sorry you are going through this, I really feel for you so much. It's a horrible thing to live with, and I can relate to everything you are saying. Please don't give up. Life has ups and downs, twists and turns. What is bad at the moment can turn to good just as quick. If you ever need a friend or just to talk, I'm right here. Love Anita xx
Roselavenders
It's a shame other people can't see (or feel) from our viewpoint! I don't feel like a 24 year old any more, would love to be out all the time clubbing ect but I know I'll pay for it the next day! This group is great tho eh? Makes you realise your not the only one, if you ever wanna chat or vent I'm here x
I feel terribly lonely at times too.Even my family don't really understand my problems fully.Tiredness keeps me indoors and I'm not too keen on people just turning up without notice as I just can't cope with it all.Fibro can be very isolating at times.Just so you no that you don't suffer alone x
Millamoo, I understand how you feel. The loneliness is horrible and even worse when our families don't understand. I'm the same as you, I can't bear anyone just dropping in without warning. I'm just not up to it. The fatigue is just overwhelming. I really hope things improve for you real soon. Love Anita X
Hi I suffer from agoraphobia and social phobia and rarely leave my home. I have only had my hubby as my friend and company with the odd visit from my son for over 25years Yes I'm lonely.
We moved to a bungalow 2 years come march in an area I don't know so feel even more isolated in unfamiliar suroundings.
The neighbours don't drop by even though they have been invited. They think i'm strange cos I don't go out or join the comunity activities.
I have finaly admitted to the doctor I am ready to accept help for these problems 25 yrs in doors yep I definitely do feel lonely.
Mo
Dizzi ,My advice is get a dog ,!! I have 2 and they are my soulmates.I was being sick this morning and neither left my side,then when I laid back in bed my big girl Boo very gently laid up against me so I could cuddle her.They bring me so much joy and laughter and the best thing is when you have a good day go for a walk ,you will always get a hello from other dog owners.Its a great way to breaking the ice with strangers.I did when I first moved to a new village ,where I still live, and if I see someone up the shop who walks their dogs always remember me and ask how is my dog?? They never remember my name but always the dogs !!!!! Life is truly difficult with this awful illness so grab any happiness and love a dog.Keep well.x
Thank you for your kind words but sad to say I would not be able to give the care to a dog it deserves to have. I am also a wheel chair user for the last 15 years or more. So just walking from room to room is a bonus. Not been able to get out even if I could I would not and can not do it with out my hubby pushing the w/chair.
But I do have the odd day when my nerves allow me a trip to the store as long as the shopping list is short lol
I have actually made a decision to try and go away for the weekend with hubby in Feb. We have chosen a motel with bar, restaurant and a sitting area if I can not manage to get out at least we won't be cooped up in the room all day long. So fingers crossed all go's to plan. If it doesn't I can always come home LOL thanks again for replying that was nice of you.
Mo xx
Ah no I didn't realise that you are wheelchair reliant.Luckily I still have good days where I can walk the dogs ,but the bad days outweigh the good.Like you I have a hubby who is great and takes them out down the fields for a good run .Yes ,do try and get away for a weekend as it really helps to have a change of scenery.Mind you having said that I get terrible travel sickness so I don't go far but every year we go away ,just the two of us,and have some us time.Take care huni.x
I do. Dont get me wrong i like to be independant and like my own company but i do get days whsn i feel so lonely it hurts it breaks my heart and i cry. Sometimes if i didnt take my childrem to activities i wouldnt see any one. I miss having a closs friend who can talk about any thing and just hang out.xx
Yes, I understand the loneliness all too well, I first encountered it after I was widowed with 2 children, 25 years ago. When you are solo, with children, you can no longer be available at short notice to socialise, there is too much to organise babysitters at short notice, so people stop inviting you, and eventually, the social scene 'forgets' you.
Then as my eyes became too bad for me to drive, there was yet another impediment to social life; and then I was diagnosed with Fibro, Such friends as I still had fell away, and isolation sets in.
it is true that we become virtually invisible when we no longer fit society's 'norms', but it is understandable in today's fast paced society; if you can't keep up you get left behind.
sadly I agree as I too get lonely as I cannot do all the things I used too either. I too have to pace myself and plan ahead eg; cannot go out tonight to visit family as ive work tomorrow etc. I have learnt to deflect peoples questions when they ask what I did at the weekend as they wouldn't be impressed with "all my ironing".
I have become used to no longer being asked to xmas meals and nights out at work, it does hurt me but that's the way it is now.
I do have wonderful friends here though, I often read posts and reply if I can. youre not alone, you have all of us x
It hits so hard. It was something that I dont think I was prepared for when I was diagnosed with fibro. At first friends were supportive but as time goes on and you continually have to drop out of things they stop asking and drift away and suddenly WHAM you are looking at four walls and even on teh good days have no options. I found the internet a great help when I eventuallytwigged to it - I was diagnosed back in 2002 so it wasnt as prevalent then! It wasnt just contacting other sufferers - at first I wasnt aware of any or of any support groups back then. It probably doesnt sound healthy but I was able to do a bit of escapism. no one knew me on forums so I could be who I wanted to be, talk about every day things but not have to mention fibro and anytime I wasnt able to go on line people just assumed you are out leading a busy social life and you go along with the illusion. I dont do that now, I have finally garnered strength through speaking to other fibro battlers, but it did help me at the time and get me through some pretty depressive moments. I now have new friends plus have connected with my old best friend who I gave links to so they could read up on fibro at their own pace and feel much more confident about who I am and fibro is part of that. Took a long time though!
Since I was diagnosed with fibro gradually one by one I have lost friends as I was the lively fun loving party girl now all I want is to get home feet up and p.j's.
When I do make the effort to go out I normally feel so exhausted I'm not able to enjoy myself . I miss the fun of going out but I know I just can't do it so i concentrate on the things that make me happy and spend my time with the people that understand and care . The people that are no longer in my life or your life are not worthy of our friendship .
But ... Sometimes all I do is work come home work come home I get very lonely and very down . I totally understand what all my fellow fibro friends are going through. It's so hard to be positive but never ever give up hope be happy with the present the past is the past and no one knows what the future holds but we all can have a fantastic time finding out making new friends along the way X
Hello ROBYNL91,,, yes you become an island alone in the sea of life,,,,,people become selfish with their time,,,and don't want to do 'home visits to the sick',,,,they think everybody should keep up with everybody else,,,,I just let them drift away,,they are not worth the effort,,ttfn from Karen.
I know that lonely feeling very well...I have my husband of 20 years but I think we all need a friend, I feel as if I over load my husband.I have a social disorder as I've gotten older.I was very out going in younger yeats... don't recall when everything changed. It can be do depressing!!! I try and go 1 day at a time to avoid becoming TOTALLY over whelmed.😇
Dear peak ,I was always the one to go out and dance the night away too.Sadly those days are well behind me .I can't even tolerate noise anymore and going out to eat is a nightmare as some foods seem to make me vomit ,I get terrible travel sickness so really I'm stuck at home.Wish I could still do all those things but have accepted now that having g Fibro changed my life and have to just go with the flow and get through each day as its comes.Have found out who my true friends are now as being I'll separated the wheat from the chafe shall we say.Now my motto is to laugh everyday and love those who love me xx
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