I apologise to people reading this because I don't like involving fibro with people that don't care but here.
I'm so sick of being ill. Last night at 4-5 in the morning I was stuck lying in exactly one position in bed, I couldn't move my leg, I couldn't turn, bend my leg, shuffle, I could literally do nothing. I tried shouting for someone but obviously everyone was asleep. I decided the only way I could do something was to basically scream my head off into a pillow and force my body to do something, my hip dislocated and the other one was exceptionally close to doing the same. I finally sat up and had to literally crawl through to my parents room because I didn't know what to do. I hate waking them up but I needed them. Dad gave me some morphine, and as most will know, that's one of the strongest pain killers around. Mum helped me back to my room and into bed. I laid in bed, still unable to move properly, I finally got onto my side and started watching online videos, hoping they would send me to sleep with the aid of the morphine, and I was awake another 7 hours after, stuck in one position the entire time and finally got some more sleep at 11am. I can barely move now and I'm on the highest dose of tramadol available.
I NEED people to understand that just because you can't see what is wrong with me, doesn't mean it doesn't exist. Nobody would EVER dream of saying that because you can't see or feel cancer in someones body, it doesn't exist...and yet people suffering from fibro are expected to put up with this on a daily basis and especially in my case, I'm told I'm just fat and that there's nothing wrong with me. That is my medical "professionals" too. I am at the end of my tether and I want to try and get people to understand that I'm truly sorry if I snap and get angry sometimes, but it genuinely is barely ever the other person, it's nearly always me.
If you've actually bothered to read all of this, thank you, it means a lot.
Written by
Berthy
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I too am on the wrong side of the body mass index but if any even dared imply this as a cause of fibro they would get a flea in their ear from me. You will find lots of support here.xLou
It really annoyed me. I lashed out quite a lot and complained to the doctors surgery about her, she's now left for "personal reasons" apparently.. Thank you, it means so much<3
Hi Berthy, I can totally empathise/sympathise with you & agree with you whole heartedly! I support you 100%! I suffer too with frequent dislocations, unable to move, my husband called me a "Beached-Whale!" this morning as I had rolled over onto my back on could go no further! I"m on Morphine continuously Slow Release daily & I had to take Oral Morphine this morning to "Break-through" the pain.
I have a "Cordless Bell" which is basically a tiny bell I press if in difficulty as husband always up before me, he has the small discrete box downstairs or out garden, it alerts him by buzzing or playing a tune, if I am in any distress! It has been/is a god-sent & reassure for us both. I would highly recommend one & they are relatively cheap (from Argos).
Professionals always blame my Weight too & I am grossly under-weight, so we cannot win! I also think if we were in a "Plaster-Cast" wherever our pain is so basically from head to foot, people would be quite alarmed & have so empathy & understanding, so your analogy with illnesses you mentioned I quite agree!
Do you have to go to A&E to have your dislocations manipulate back in? I do, so does my son, its done with "Gas n Air" by a Doctor, so not as painful as laying there with a dislocation! Just a thought?
I sincerely hope your chronic pain elevates very soon for you.
Sending positive, healing, comforting vibes your way.
Hi Sue, please don"t worry! I gather from your Post your Camping Holiday did"nt go too well, so sorry to hear that! I will PM you later (its 5.40am now can"t sleep for pain) then perhaps it will kick-start you to Pm me back, worth a go?
I sincerely hope you"re not in too much discomfort/pain?
Wow, I didn't actually know it was essentially the same for the slimmer people. That's interesting, thank you.
I think what made it so bad is that it's the first time I literally couldn't move, I couldn't even move my foot or ankle because it hurt so much...I've never been as bad that I was almost paralysed and I was terrified that I'd really done something bad to my back or spine. I was screaming and shouting for mum or dad or even my brother, but no one heard me..I was so scared.
I usually manage to put them back in either by my self or with the help from mum or my brother. Which I know is reckless and potentially dangerous, but if I went in for every dislocation I would be in every day, my fingers and wrists are worse because I'm an art student...which is actually worse..if that makes sense? xD
Thank you, it means an awful lot<3 *gentle hugs back*
Hi Berthy, Thanks for reply. You really are going through it @ mo, I am too so can totally empathise/sympathise with you! Thank you for making everyone aware just how Fibro makes us so ill & such a debilitating condition! Do you have Hyper-mobility with all your joints related to Fibro? I only suggested A&E as sounded by what you said that your Hip had Dislocated which as you know is huge joint! Yes I agree with you, I would & especially my son would live in hospital for every dislocation we have but need Medical Attention for larger Joints that dislocate! Those Wireless "Door-bells" are literally a free-standing door bell you can leave on your bed-side table or sleep with it in your hand! Discrete Box your parents can carry around house or Garden you can alert them by 1 press of bell.I would"nt be without mine! They are in Argos paid £5.99 for mine, the range is great too. Well worth it just for peace of mind that you can"t get stuck!
Hope you feel better soon.
Sending positive, healing, comforting energies your way
I hope you're back on the road to feeling better by now and that you can sleep better soon sweetheart. Both fortunately and unfortunately I have managed to find a knack of getting them back in, I had just got myself into a very difficult position to work around, it's still not right now, but the pain killers work when I'm not moving too much.
Yes, I had a look last night and I even found some for £3.00 on the internet too and mum and dad said it seemed like a brilliant idea too, so thank you so much for the suggestion, I'd never, ever have thought of it otherwise!
Hi Berthy, Thanks for your reply. Glad you managed to get them back in. My son has a knack of manipulating his as they happen so often to him. I sincerely hope you are in less pain today? Well done you for finding 1 for £3! I have one so does our son, they are worth weight in Gold. Glad to have been of help to you. Thank you for your offer of a chat too, very thoughtful of you.
Take Care
Sending positive, healing, comforting, soothing vibes your way. XX
hi Berthy I suppose that I am one of the `lucky ` ones. My muscle fatigue is so bad that sometimes i can only manage 3 or 4 steps at a time and use a power wheel chair, so my illness is obvious and I make good use of it by explaining what it is like for people who live with fibro, to any one who is interested. I have just been camping for a few days ( never again ) and at least 3 people are going home knowing more than they did.
it is all that we can do, to make people more aware. so well done.
I guess it's simply a case of repetition to as many people as humanly possible. and I must admit that quite a few friends obviously read it properly enough to comment on it or message me with positive love and care filled words, so that's something!
hi berthy, I am sorry you are having such a rough time. I get stuck in a painful position too. when my Dad was ill we bought him a wireless doorbell just as bettybaby mentioned. It would make it easier for you to get help.
I hope you manage to get some ease from your pain.
((((huge gentle hugs)))) I am so sorry that you're feeling so much pain at the moment. This site is such a blessing for us fibromites to let go of some of those frustrating feelings because we all know and understand what others are going through. I hope you get some respite from some pain soon
Hi Bertha I hope your feeling a bit better ,my dress size has gone up between 4/5 sizes in the last 4 years if you can't move you are going to grow my blood pressure is now going through the roof and again and I get told to rest ,I am now a 16/18 which I know isn't huge but it is for me , this was the size I was in my unhappy life when I was married so I am going backwards after picking myself up and sorting myself out I am so sorry your in so much pain , I lost my job resently as I was bullied by a team leader who didn't understand MCTD and fibro my body gave up and I could not walk across a room without what people thought was asthma attack and the bxxxx was still saying I was letting everybody down after I had been off work 6 months and lost my job ,I have just bought a sticker for my car "just coz you can't see my disability doesn't mean I don't have one " I am hoping to start having good days again I can hope ,we have to have that ,take care
Hope might be all that we have, but we're not alone, it gives us a chance to connect with others and make a huge net of hope that every single person that needs it is saved. I'm really sorry you've lost your job...I hope you find something that you find more manageable and easier to follow through with on a daily basis. I also really, really hope you have some good days again, keep trying your hardest and know the entire community here are behind you every single step of the way.
I am so sorry to read what you have been going through it must have been a terrible experience. Yes it is very difficult us having this invisible illness. Often we put on this brave face and try to make ourselves look "normal" and people can;t believe that there is anything wrong with us. We are not asking for sympathy just empathy. At least coming on this site you know that people will not judge you but will understand the trials you are going through. Hope tomorrow is better for you and that you can get some proper rest tonight. Soft hugs for youx
Thank you very much, I'm just going to just about knock myself out with as many pain killers I can safely take and probably stay in bed all Sunday I think, hopefully that will make a difference. *gentle hugs* x
Hi.berthy.. I would like to say my hips too do this.I am not that over weight. I was told I've all the simptons of fribo but no tender points.I am on morpie for my damaged back.I get all these wweiod simptons. Crawling.pain.mind goes.feel I'll.down..I feel a lone to.think I should of had other things looked at first..but the hips thing I get real bad..I even been having lose bowl movement. And rest,worset of all the rumotolst who said think you have frbo.? Said its in our heads..?l?!!well..no help from gp..or nothing so has
Well has DDD. Scoliosis. Osteoarthritis. Moved and btust did for discs? Feel I've my grand dementsure too...went pain clinic what a ploncer told me to stop my pain meds?? I feel so alone no one uderstands..?hot cold sweats are bad.?I snap.?my hubby don't understand..i feel your upset?pain?the hips locking upxxxx
Oh sweetheart, you're never alone as long as you're on here, and you never will be because we are all equal and understanding of almost exactly the same symptoms. Yeah, I have the neurological side of things thrown at me too, but they expanded a little and said that nearly all cases have been associated with some sort of trauma at a younger age. For example Morgan Freeman has it and that occurred after something happening to his wrist in a car accident. Just hang on in there hun! xxx
I have read your post with so much pain and sorrow for what you are suffering at this time, and I genuinely hope that you can find some resolution and relief to all of this. Your night sounds horrendous and I think that you are a much braver and more refined person than I can ever hope to be.
It will soon be Fibromyalgia awareness week, and maybe we can all scream our heads off at anyone and everyone to try and get people to listen?
Oh I'm not brave at all, someone brave would have just stood up and walked it off. I will do, I will scream it from the rooftops as loud as I can possibly manage!
And you, I hope you're as well as you possibly can be
Hi. I read it because you look so sweet on your cover picture haha. im in the u.s. here, had fibro since 91. I'm now 54 but been in your spot often. hang in there friend.
Haha, thank you It's a rather old picture now but I'm sure I still look at least recognisable next to it...hopefully! Can I ask what happens in regard to the fibro and healthcare needed in the U.S and paying for it all etc?
Hello hello! Its 9:30 in the eve here, and glad to see your note. What has happened is that at one time, and somewhat now, the medical community here has been divided about fibromyalgia. Half believing it's real, the other half believing its all in your head. Our healthcare system is very mixed up, and each person has to get what they can based on their job (insurance covers healthcare thru jobs) and money (now since our President Obama has started a new medical care system, people are legally required to buy healthcare for themselves. Our friends are all mixed on their opinions. Truthfully, fibromyalgia is respected by those who respect it. We have "Pain Clinics" where most can go w/fibro., and get narcotic relief. We are to sign a Pain Contract stating we will not abuse, sell, or go to other docs', known as doctor shopping. My medical doc works for a big healthcare hospital and they just started a new policy where we are being forcibly given lesser amounts of pain medicine. It has been a crazy thing, I don't like the increased pain, but I do like being on less narcotics. Some doctors here won't give narcotics because the state I live in, Oregon, and another, Oklahoma, both have very high death rates of overdose. That gives those of us who DO NOT abuse narcotics a bad name, and is unfair. Tell me, what is it like for you? 'And is this a bad time? I'd love to continue the conversation. Truly yours, Colleen
Any time is fine by me, it might take a little while for us to reply to one another because of the time differences but I'm always happy to talk
I'm not sure how you deal with prescription charges, but they're around £8.50 each, and I'm on 8/9 different ones a day, but we have something where you can prepay a fixed amount (£104 a year I think) and you basically use that as proof that you've paid the standard charge and it's LOADS cheaper and much easier, as I don't have any exemption certificates or anything to allow cheaper, or free prescriptions. That's the only thing we have the necessity to pay for, appointments with specialists and doctors are completely free and for example if I'm taken into hospital for a dislocated shoulder or something, that treatment is completely free and any medications administered there aren't charged to me either but any follow up medications have to be paid for by myself...it's basically any treatment is free but any drugs are paid for barring a load of exemptions that I don't fit into the categories of unfortunately. I hope that's helped...I feel like I've not really said anything in a massive paragraph xD
Hello!! Wow, docs are free? Where DO you live? This countrys healthcare system is crazy. Its 11:10 here prior to midnight. You've said lots! We have 7 grandkids, another on the way, we're on a weightloss exercise regime for the last 3 yrs., and we're both going over our parts for our school on Thursday night where you study the Bible and share in the school for learning how to teach yourself and others. So, I have a cat who's 14 and a grouchy old lady. Hows that for something else!! haha
Hi Colleen, pleased to 'meet you'.I think Berthy is in the UK same as me, The way our health care works is that eveeryone who is working pays National Insurance stamps.This is used to fund the National Health Service.If you dont work eg if you're achild or old aged you do not have to pay National Insurance.Same if you are too unwell to work.We pay onky for medications but again they are free if your income is low, you are on certain meds, are aged over 60, a child or even if you are pregnant!.Again for a year after having a baby prescriptions are free and so is dental care.
If you want you can pay for orivate healthcare which basically just gets you up the queue to be seen quicker.
We dont have to pay for GP visits ir hospital care.We have already oaid in National Insurance. X
Thank you, it's nice to hear the blessings part (there's something I thought I'd never say!) both my parents are Christians and say it a million times a day, it's nice to hear other people say it too these days, and right back at you xx
hun I no how you feel I'm sorry to hear that and I hope people read what you have put as it sums up everything hope you feel better soon well as better than you do big hugs. dawn x
Bertha, so sorry to hear of the difficult night you had. I think the wireless doorbell is a super idea. My husband tends to sit with his headphones on and doesn't always hear me call so that would be so much better. Sometimes I try phoning his mobile when I am lying in bed and he's downstairs, but that depends on whether or not he has it with him!!!
Why is it that time seems to go so slowly when you can't sleep at night?
As to other people not understanding our Fibro, I totally agree with you- many members of my own family still don't get it- eg post wedding party for my younger son last. Sat. My elder son came up and gave me a bear hug-I wasn't expecting it or I would have been prepared( he's usually not the huggy type!) he was giving me thumps on the back and I had to raise my voice to get him to stop! Quite embarrassing when there are loads of people around and you're trying to seem normal in front of the new in-laws etc! He couldn't see what he was doing wrong-why was I cross. Cross? I was almost in tears. My pain levels were already sky high after my fall at the airport on our return from the wedding in Cyprus 2weeks ago. My other son ( the one who got married is far bigger-he is into body building-but he would never dream of hugging me like that, he's really gentle. Just because they can't see what's wrong with us doesn't mean we are fine!!!
Sorry, this is my second rant of the night. Thank goodness for people on this site who understand and empathise.
PS. blessings? Yes. I'm a Christian too and I do count my blessings as I know there are plenty people out there and on this forum who are trying to cope with much more pain than I have and many without a visible support network, so your parents are right and it's great that you have them for support. Xoxox
Haha I tried ringing, but I live in the middle of then North Yorkshire moors and there's no signal, especially in my bedroom because it's the back room, I thought about it, but I was once again, beaten by sod's law!
Oh sweetheart I promise you I know how you feel...my main chair in the house is beside the path through from my dads room/the computer room almost every time he pats me on the shoulder and says lovely things like he loves me and I'm wonderful etc (which as little as I'll show it to him, mean a hell of a lot...maybe I should find a way to tell him instead of behaving like a spoilt little princess..) and I feel horrible saying it but sometimes when I can hear him getting ready to walk through to the kitchen sometimes I have to shout through that it's not safe to touch me...and at the minute that is more than the case...you know when you itch on a really bad day and you barely have to touch your skin and it's burning and stinging like you've run over your skin with a fork repeatedly or something. And the marks that are left make you look like a werewolf has tried to rip your arm off or something! Maybe that's just me though ><
The best thing to say something to someone if they tell you "you don't look ill, you look perfectly fine!" just say, would you tell someone with cancer that they obviously weren't ill because you can't see their tumour? Nobody would ever even contemplate saying that to someone...it brings things back into perspective though, I've had to use it a lot recently.
Haha, what was the internet made for if not rants?! Well...and one more thing but let's not go down that avenue! I'll always listen/read/respond if you ever need someone, for anything
I honestly think I've almost become one without noticing, like I've just kinda slipped into that seat or something, unintentionally...but I've found myself feeling a little more supported somehow...and I'm not sure where you stand with the spiritual/demon side of things, but recently I've had a lot of little gremlins on my back, after a huge fall out with the only two friends I've had, so me mum and dad have been fighting that as a family. My brother couldn't care less, but then again he probably doesn't believe in spirits actually existing knowing him. Most people of my age would never admit to the Christian side of things in regards to themselves, and I do think my hesitance is to do with the final bit of rebellion, because let's be honest, when mum and dads little blue eyed blonde haired little girl dyed her hair every colour in the rainbow and pierced more of her skin that should be really be allowed...I've just rebelled as long as I could humanly manage xD But, having said that, why change the habit of a lifetime?
Sorry...I'm kind of double ranted there...what a pair we are!
So sorry sweetheart!!! Have you tried Opana ER it really helped me when the morphine didn't. I pray this is helpful to you and can lessen your suffering!!! xxx Mitzi
I am sorry you are having such a hard time. I too have FM and I am sure most people think I am "putting it on" It is difficult to be in pain every day of your life and no help available.
Just seen your post on here - I commented on the other one, and I hope you understand that you talking to me if and when you want to goes without saying? I felt so much for you when I read it - I really did, but words seemed so feeble at the time and I had to share with you what I thought you needed to know before I forgot.
Well personally I think Ken is right, you are brave. You sound brave to me. I think you're hard yourself. You see your failings where as others see your successes. (Which is exactly what I do).
Also, I wanted to ask, and especially if Fibro Awareness week is coming up - how would you feel about me sharing your Facebook post? It might reach a few more people - I know I don't have many Friends on Facebook (which I've done on purpose, for a number of reasons) but I was thinking that every little helps doesn't it? I have someone on this community as a friend on there, and a someone from uni who has Fibro (the one who said that you're only adding to the stigma if you don't talk about it openly) who I reckon would be interested in sharing it? I love your analogy about the cancer tumour, I think it's genius, and I reckon if we use that analogy it might influence others to think about Fibro differently. I was also thinking I could use it as an opportunity to share my own experience of Fibro on there because not many people I have on Facebook know that I have it, so it would be a chance to 'come out' as it where - others might be then encouraged to do the same.
Thank you for listening to me online, and thanks for your emails. I've decided that I'm no longer going to continue with any sort of therapy or professional help (at least for now) and funnily enough, I feel a lot better.
Thank you sweetheart, at least you'll admit you do it too now! Of course I know, thank you and the same will always apply hun.
And yes, please share it! I'd love it if I could make even a couple of other people understand, you never have to ask me, share and say whatever you like darl
Me too honey, had all of the"your overweight" your mentally ill, we can't find nothing...... Unfortunately it seems to be a common trait among us... Hoping your feeling better..... Sending lots of love n healing...... Neli x
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It's a rather old picture now but I'm sure I still look at least recognisable next to it...hopefully! Can I ask what happens in regard to the fibro and healthcare needed in the U.S and paying for it all etc?
I promise you I know how you feel...my main chair in the house is beside the path through from my dads room/the computer room almost every time he pats me on the shoulder and says lovely things like he loves me and I'm wonderful etc (which as little as I'll show it to him, mean a hell of a lot...maybe I should find a way to tell him instead of behaving like a spoilt little princess..) and I feel horrible saying it but sometimes when I can hear him getting ready to walk through to the kitchen sometimes I have to shout through that it's not safe to touch me...and at the minute that is more than the case...you know when you itch on a really bad day and you barely have to touch your skin and it's burning and stinging like you've run over your skin with a fork repeatedly or something. And the marks that are left make you look like a werewolf has tried to rip your arm off or something! Maybe that's just me though >< 
Well...and one more thing but let's not go down that avenue! I'll always listen/read/respond if you ever need someone, for anything 
Friends and Family don't believe in my condition.
Trying to feel more positive
Fibro does it get any better
Am I not entitled to a sex life?
