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Living With Fibromyalgia - Online Support Group

A cry for help

#1

How do people do this? How do people cope? How does anyone with Fibromyalgia keep going? I just don't know how to anymore!
I am 20 years old, all my friends are out partying, having fun and living a normal life. I am sat here in a corner in pain with no one to talk too not even my partner of almost 3 years, as nobody understands. Everybody says "It's all in your head", "You just need to rest", "You'll be fine", "You are just being lazy" I'll tell you what i wish i was just being LAZY then at least i would be able to do something about it.
How do i do this on my own? No one believes me when i can hardly move, when I'm in tears as i am pushed to my limit because all my pain is Invisible. I work 30+ hours a week trying to just bring in enough money to survive on.

Friends pretend to understand but in reality just don't want to know or hear the whining anymore.
Family, well they try to understand and half support me but when in reality they still think it's all in my head. I just wish i had a broken arm or leg at least that way they could see and understand the pain i am in on a daily basis. I just need help I can't do this anymore I can't keep going on like this. I am constantly tired and never have any energy to do anything, It is difficult just getting out of bed in the morning for work. I almost think it is time to just give in and let the fibromyalgia win.

No this is not a cry for attention this is a girl in desperate need of someone to talk to who knows what I am going through.

#2

Hi Eclipse,

I got to this thread after accepting your friend request. WOW! Good thread!

I can try at least to give my view on some issues you raise.

Please keep in mind that I came to livingwithfibro.org after using livingwithataxia.org as I have both ataxia and fibro.

"How do people do this? How do people cope? How does anyone with Fibromyalgia keep going?":

Unfortunately, no one single answer will ever suffice. Sorry if that is a bit blunt but it is true. People do find ways to cope though. Some folk take a look at their situation and ask not "How do I do this?" so much as "How can I find ways to adapt so that I can do this?". Adapting may not be easy to start with but it can be a better way to do things.

As for 'coping' or 'going on', I will not 'sugar coat' things - it can be tough. Personally, I find that trying to stay positive, no matter how bad things seem, helps. Talking to others about my condition(s) helps - especially on these forums. Medication may help with pain but is mostly a physical thing. Some find that meditation helps relax or refresh body, mind and being (or 'soul'). Diet can help too! You probably know that your diet can have a big impact on you physically - I avoid caffeine, some dairy and other things. Your diet can help you cope not just physically but in other ways! Some might say "What's good for your body is good for your soul" or such. I know only too well the truth in this! If I eat a 'trigger' food for example and have a very bad day (more often week) because of it, my whole being changes as, not only do I get physical problems, this can lead to emotional issues and my normal 'acceptable' self sometimes changes to a nasty, intolerant self for example.

One good thing is that you have found these forums and I'm sure others can give you sound advice or good information about ways to cope.

"I am 20 years old, all my friends are out partying, having fun and living a normal life ... nobody understands ... i wish i was just being LAZY":

This is, understandably, a huge concern. I know from my own experience how hard it can be when trying to socialise. Even now, in my 40s, I find it hard to go out to a pub and be with friends - having fun. It can be difficult appearing to be a 'wall flower' or anti-social. It's not just that I may not always feel up to going out because of my health. Sometimes going out can be the trigger! I do not drink alcohol but it can take me several days to recover from going out socialising. I can only say that going to 'quieter' pubs or out for a meal in a reasonably quiet restaurant is better for me. This is maybe not the best solution but it gets me out and about. Without wanting to disrespect anybody, I usually plan to go out with friends that are more sympathetic to me where possible.

It can be very hard to tell a partner, family member, friend or stranger about our health and even harder for that person to understand. Unfortunately, fibro is a mostly 'invisible' condition and as such much harder for some without experience of it to accept or understand than an obvious condition. It may be more obvious to see why a person with a gash in the forehead is in pain than some with a fibro headache or migraine for example. Again, there is no easy 'one size fits all' solution here. I'm lucky in that most my friends and family have taken time to at least try to understand my health issues and those that initially did tell me I was just being lazy or that there was nothing wrong have come to see that I am genuinely affected by my health conditions. It can be difficult to get people interested in our health condition(s) rather than just prejudge us but maybe you could point your family and friends to various web sites that explain what fibro is and this could help. I had something pointed out to me a while ago that helped me some - it may be of use to you in a small way; sometimes people are unsympathetic to those who have ill health (obvious or not) because they fear for their own health or mortality even. There will always be those that find it easier to prejudge though and even those that will not accept the health status of others even if shown hospital or doctors letters, notes or records. It is sad that I know a few people like that and have even been verbally abused and accused of fakery as a result. I have not fallen out with those people but I do not actively interact with them now - it's all very sad but I see no reason why I should accept the intolerance and ignorance these people show. How I cope with those people is that I see the loss as theirs not mine.

There is something else to say about friends and family seeming unhelpful and you may not like to read it but it is something that happened to me and it took a bit of time to sink in! I must say though that with my ataxia and fibro, I have mobility and some coordination issues and this is an important thing to note before reading on! So here goes;

IT IS HARD TO ACCEPT HELP BUT WE MUST ACCEPT IT SOMETIMES!

Yeah! Sorry for 'shouting'. It really is true though. I have a very independent nature and like to do things for myself and I despise that my health conditions have caused me to change how I do things. The most difficult thing for me was accepting that, at times, I do need help. An example of this is that I used to visit my sister in Germany up to three times a year before my health deteriorated but missed two years in a row as I was too pig headed to accept help while traveling - I now get help from someone when I want to travel in such a way. So! I hope I have not offended but I just wanted to 'put that out there' so to write.

'No this is not a cry for attention this is a girl in desperate need of someone to talk to who knows what I am going through.'

Ah! I would hope that you are making a cry for attention. It is only by doing so that you can make it understood that the attention you require is not some narcissistic* whim. Rather, it is a real and valid call out for help. As, kind of, pointed out when I 'shouted', we can all use help at some point in our life. This forum is a good place for you to make that call out for help as it is frequented by people in a similar situation to you, their friends and relatives come here too and may be able to help.

That's all! Well, almost all. I realise this has turned into a bit of a 'wall of text'. I do 'go on' some! I only hope that something of what I have written will help - if only in a small way. I sincerely hope I have caused no offence.

Kindest regards,

Michael.

* Get me! I spelled 'narcissistic' correctly on my first attempt without having to spell check or look it up! The mind boggles!

#3

Hi Michael

Thanks for reading it .. I was not in a good place at all when writing this last night as i had gone through an incredibly busy day at work to come home to the boyfriend having a go at me because i felt really bad as i was in a lot of pain and had a huge migraine.

What is Ataxia? It can't be nice having more than just Fibro as that condition is hard enough to live with.. I have turned to this site due to doctors being rubbish and not helping me in the slightest after diagnosing me.

I am struggling to Adapt to my new situation as i have began to realise I am fighting against my own body rather than working with it. I can no longer horse ride, run, rock climb or even walk very far with my dog anymore if i even get the energy up to do that.. due to the simple fact any little activity i do ends me in bed rest for the day as i can hardly move the next day thanks to all the pain. How do you go about daily life? How do you find the energy to do anything and cope with the pain?

I try to stay positive but it is so difficult especially when everything gets worse. I am not on many medications as i hate taking pain killers as i am scared of the effects. I have tried meditation and hypnotherapy but it only seems to help for a little bit but maybe i am being a bit slack with it. Yes i have slowly found out diet can play a big part in everything but unfortunately when i feel down or in pain i just want to eat chocolate or rubbish which makes me feel worse. I have not as of yet found any triggers or even looked into them.. Doctors are not really helping me as it is almost like "your too young to be in pain" etc..

I understand the Intolerant self as i have this quite often i have no patience either and always end up snapping at the people around me..

Everything you have written has been a great help to me. Sometimes it just feels like i am all alone in this which makes it so difficult i almost just want to give up.

I find i am just pushing my friends away i used to be so sociable always going out and seeing friends every chance i got.. I don't tend to drink alcohol unless it is one beer every now and then .. as it feel like it makes me worse off everytime and the hangover always makes everything ten times worse. See my friends due try to care but of course they have lives too.. so when i want to do something just to get out for a bit and feel like i have actually done something with my days its difficult because they want to do something like go drinking or go for a walk or even bowling which i just can't do so i just end up cancelling.

It is difficult to talk to someone who doesn't know what your going through as you almost feel like you are talking to a brick wall. It is even harder to tell them how much I'm struggling as again i think they judge and almost think its fake, It makes you feel you almost have to prove it. I have tried showing friends family and even my partner sites and going through things with them but it never seems to help. I went through one site with my partner about 'how to live with someone with fibro' and 'what not to say' but it didn't seem to make a difference he still says the wrong thing constantly which makes me feel more crappy because I'm stressed out and upset.

Yes you are right it is hard to except help especially when you feel weak enough anyway.. It is kind of letting someone see your weakness. Difficult to explain but i am certain you already know how it makes you feel.

I just hate letting people in, I just don't want to be judged as someone using my illness as an attention thing as it really isn't. I just don't know how to go through life with this and honestly do need help and someone to talk to about it and sometimes it is a lot nicer when it is a stranger.

I do really appreciate that you have taken your time to write back to me and I'm very grateful.

I love the fact you got it right although i don't think i would have noticed if you didn't I'm not the best speller oops.

Thank you again .. You defiantly did not insult me or anything your words really helped.

Gina

#4

Hi Gina,

I will try to answer your previous post as I read it through again - probably going to be a long post from me. Heads up! Wall of text incoming.

It was a pleasure to read and respond to your original post (OP) I get the whole 'in a bad place' thing - been there, bought the T-Shirt, stole the hat etc. It's a double bad when the 'bad place' is compounded by pain and a migraine in itself is awful without being part of that 'bad place'. I hope you are feeling much better.

Ataxia is best explained if you visit http://www.livingwithataxia.org/ - another Ben's Friends venture. Basically; "People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected". In my case, I cannot walk far,I can manage to walk about in the house with walking sticks (we have hand rails and other aids) but outside I can only manage short distances on crutches and have a mobility scooter to get around town and wheelchair for trips further afield. I also have intermittent coordination issues in my hands and pain - well I'm sure you get the idea!

I was first (un)diagnosed with ataxia in March 2009 after an accident the year before. After 7 or so years of prodding and poking, undiagnosed ataxia then 'gait' ataxia my 'medical team' have now concluded that I have Cerebellar ataxia. The doctors and such have been a mix of good, bad and indifferent but mainly very good in general.

My Fibro diagnosis was something of a surprise - but not! I spoke with my GP about muscle and other pain I regularly get around my body and the debilitating migraines I get from time to time. We also spoke of how I was told in my childhood that I had fibrositis, the GP replied that it was in my records that I have (and have had for years) fibromyalgia! This was in January 2013. It was no surprise in that I knew something was wrong and had been living as best I could for years and (physically) working through the pain and such but it was a surprise to be told that, of course I must have it hard, having both ataxia and fibro. At the surgery I attend I see whichever of the doctors is available (its usually one of three I see now) but non had thought to confirm the fibro over the years!

Yeah! Sport was never my strong point but I did enjoy the odd game of cricket, baseball or American football. I also used to cycle up to twenty miles of an evening once or twice a week after work and up to forty miles a day on alternate weekends (sometimes more). I enjoyed hiking and from time to time got the chance to wind surf, canoe or rock climb / abseil. All of those are not really achievable just now for me but I may be able to start swimming again soon and a friend is looking into the possibility of me using a recumbent trike at a nearby athletics field - these may never happen but at least we are taking a look!

I know the energy thing all too well. There are days I get up and feel I could run a marathon but mostly I get fatigued really quickly. Even preparing a meal can leave me exhausted. I'm going to the seaside tomorrow and it should be fun - even though the weather forecast is not so good. I know that, in all likelihood, I will need to stay in bed or at least in my darkened room for a few days after but it will be a small price to pay for a day out.

I do my best to go about my daily life as any other person would but have to be aware of pain management - I take two types of pain killer and a muscle relaxant during the day and have agreed with my GP to stay off higher grade medication for the time being as it is likely to be addictive. I have had no choice other than to adapt my life around my health. At first it was hard to accept I was in poor health and need to adapt - we men are indestructible after all! (Or at least we like to think we are). Over time I have come to realise my limits and change the things I do. Sure I have had to stop some things (like sport) but the old adage "were there is a will there is a way" is as true today as ever. We are all different though and the right adaptation for me may not be right for you. It may take some effort but I'm sure you can 'get there'. I have a list of food and drink I avoid and this helps. I try to manage my energy for the day if I feel need to. It may be a good idea for you to read up on the 'Spoon Theory' as, though it may not help, it is a good story and could give you good insight to the problem: http://www.butyoudontlooksick.com/category/the-spoon-theory/ is the best source.

Staying positive is a real boon to me but I try not to over do it! It is entirely possible that being inappropriately positive can have a very negative outcome. Still! I tries me best. As for 'triggers' I came across this idea after having a particularly bad migraine that took me 'out of play' for a week some years ago. I spoke with a GP about the migraine and he pointed me to a book about migraine and 'triggers' - this was when the WWW was young. I do not recall the name of the book but you should be able to find sources on the net about such 'triggers'. I will tell though that it is pretty much trial and error and most people have varying and different 'triggers'. Hmm! Chocolate - must use in moderation as it can be a 'trigger' for me. I do, only sometimes 'comfort eat'. I know it can be bad for me but we all need a treat now and then.

As we go on (and I know I do), I think it is important to take a little it of a tangent here! I want to impart something that may or may not be of use. In the past, I too often thought that I was all alone and that I wanted to just give up on myself, those around me and life in general. Thing is, back then, I really was in a 'bad' place. My whole life was affected by the fibro (unconfirmed then) and the onset of ataxia as it where. They were difficult times. When people were telling me "chin up", "it may never happen", "others have it worse than you" and other such perceived banalities or worse still coming up with really inconsiderate things like "you are too young to be ill" or "faker - I went to school with you and there was nothing wrong then" (20+ years after leaving school), though I am more or less a pacifist by nature, I truly just wanted to 'deck' them - but that would have taken me below their level. Yes! Life can be hard and throw us a tangent. Yes! Adaptation is not always easy. Yes! There are lots of somewhat idiotic, unsympathetic people that will make things worse rather than leave alone or improve our lives. Non of these is worthy of making us give up though and, tough as it may be, we must never let them do so.

Back on track! Our friends are our friends but (you are right) they cannot always be available to us due to their own family, work and other commitments. I have friends I used to see regular that I rarely see now - since my heath nose dived. On the other hand, I have friends I rarely saw that I see often now. Go figure! I even get told by some of my new friends or old ones that have 'stayed around' that I am going to the pub and will be dragged there by force if needed. It can be really hard adapting to socialising in a different way and I really appreciate your concerns on the matter. Sometimes it feels rotten that I have had to adjust but my friends have not been prepared to but that is life I suppose. Again I feel lucky in that I now have a core of like minded, tolerant, accepting and adaptable (if I can use that word here) friends - some are wider family members, some are old friends and some are new. I sincerely hope you can find your own core of such wonderful people. Remember though that part of asking others to adapt is to be flexible and open to adaptation our self.

"It is difficult to talk to someone who doesn't know ... you almost have to prove it." This is all too true. Try not to let it upset you - hard as that may be. I do not like letting people in either. Yes I can be very independent and adventurous but that does not make me a extravert who wants people poking around in my private pain. As we have noted though. Sometimes we need to let people in and accept that, not only do they want to help, they care for us. It can be very easy to see ones own perceived weakness and to think that others see us as weak when, maybe, they really do not. I know it took months with some family and friends to 'prove' that I actually have poor health and some still do not believe me - some never will for whatever reason. It can be really frustrating when others are unsympathetic. On the flip side, it commonly only takes one person to take an interest - then our 'wider circle' will come to a better understanding. I hope you can find that one.

Well! What a wall of text!

Think I'll finish off now.

I truly do not have the right answers and I fully understand we are all different. I'm glad though that my earlier writings were well received. Taking time to help someone else can be very helpful to all parties - in helping others we often help, be it inadvertently, our own cause.

As I mentioned earlier, I'm not always on site. Sometimes I may not be able to respond in a timely fashion. It has been good 'chewing the cud' though and I look forward to more of the same from time to time. :)

Kind regards,

Michael.

#5

you can always talk to me. i understand i started with pain when i was 13 i'm 40 now. i'm here to support you because i was just the same way when i was younger. i did find good drs that gave me really good meds and i feel better.