My name is Steve, I'm a 41 year old man and just like all you lovely people, I suffer from fibro, I've been diagnosed for 6 years but suffered for around 9+ years, I also suffer with cfs, for the people out there that don't know what cfs is, the technical term is chronic fatigue syndrome, it's horrible especially when you have fibro, I'll give you a short version of what it is, exhausted constantly but no matter how tired you are you struggle to get to sleep, when you get to sleep a short time later you wake up, you never feel like you have had a good sleep, because you don't get into a deep sleep "rem" this means rapid eye movement, you get up in the morning and you might feel that worse than you did before you went to bed, I feel burnt out all the time, you don't have the motivation to do anything, together with the fibro it is absolutely awful, if you look at the time I posted this, you will see I've been up all night, I hope I'm not boring you to sleep lol, here are the lovely symptoms I suffer on a daily basis due to fibro and cfs, pain everywhere joints muscles and bones, constant tiredness, forgetfulness, nausea, dizziness, burning sensations, muscle spasms, backache, headaches and migraines, clumsiness, loss of balance, stomachache, diarrhoea or constipation, struggling to get words out, forget what I was saying, forget words, lack of concentration, I'm in a world of my own, I get lost while I'm out, agitated in crowded areas, chest pains when I get stressed, life is nothing like it used to be, I had my own business in which I employed 11 staff members, my business was very successful, on my way home from work I got totally lost, I got very scared and I didn't know what was happening to me, I was falling asleep at my desk, I had a constant headache and I was very worried, at one point I convinced myself that I had a brain tumour, I eventually went to the doctors without telling my wife, I was sent for tests scans blood works alsorts of examinations, I was sent to see a rumourtologest, by then my wife had realised that there was something going on with me, so we goes to see this rumourtologest, he asked me a few questions then poked and prodded me all over, I felt like a second hand pin cushion lol, he said you have fibromyalgia, I said there's no need to swear at me, I'm sorry you can't loose your sense of humour no matter what, he explained what it was all about, I didn't understand at the time, when we got home I went on the net to find out more, so what did I do?? I fought and fought against the fibro, big huge massive mistake, after 4 years of fighting a none ending battle, I gave in and accepted the fact that this is it, this is my life now, I've had alsorts of therapy's and medications to try to ease the symptoms, I have good days and I have terrible days but the best thing I did was accepting the fibro and the cfs, the cfs was diagnosed about two and a half years later, I am pleased to be accepted into your Comunity, if I can help by answering anyone's questions about fibro or cfs, I would be honoured to help any of you lovely people if I'm able to do so, thank you for welcoming me into your Comunity,
Steve
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Welcome ....glad you joined . We all need that support when we remember what is what we wanted haha .... Everyone is lovely here and all try and help as much as possible. Like yourself i was diagnosed about 4years ago .i was first siagnoaes with sjogrens and was only after mu doctor thought i moves my bed to the surgery was i told it was fibro that was causing the pain.... I have struggled majorly accepting thia illness because i dont have time to sit still or have no energy . I actually nearly had a breakdown, and felt like i was grieving for the me that had gone .
Anyway ive not slept so i will say good day for now and hope you have a great day ... Big hugs ... Aud x
Thank You for your post & your story - I think you will find the community is supportive, informative & friendly, as Aud01 said we do support each other through the ups & downs.
I have had Fibro for 9 years and I have volunteered for 3 years - well it is all in my profile if you want to read about me. Please do take a look at our website fmauk.org & if you have any questions do get in touch.
I guess I am one of the lucky ones in a way. I never struggled with accepting fibro. I have known nothing else. I have had it since birth they think. The other issues are the ones that I have struggled with. But like most people who have fibro I fought against it. Which I did most of my life. Around 12 years ago my body rebelled against what I had put it through. It gave me NO choice! I have been disabled since that very day. I hope most of this makes since. I live in Tejas (Texas) . I do apologize if this is coming out weird. Been in flare since the 4 th . I have deslixia ( or however you spell it) I also have PTSD, ibs, rheumatic heart valve disease, COPD, scoliosis, spinal degenerative disease, cfs and of course the lovely Fibro. Many of us here have multiple issues and as a few of my friends here would say. We keep a stiff upper lip and deal to the best of our ability. Love spell check by the way. I can truthfully say I am happy you found the site even if I can't say I am happy to make your here. I would not wish fibro or cfs on my worst enemy. I do we will become friends because we all need as many of those as we can get. We may moan, complain, ask questions but we support each other. This site has been a true lifeline for me. Personally I deal with pain by joking. Yes I know that's weird but laugh or cry I am still me. Welcome and hugs
A huge welcome to you I hope you find your way around the site without any hitches.
Any problems or questions ask away we have a great series of good articles covering various topics, including the site regulation do have a look familiarise your self with everything.
Recently I went to see a pain consultant who believes that CFS, which I have, and fibromyalgia are the same condition. The symptoms are so many and varied and so similar in both diseases so that not many people share exactly the same symptoms.
But whichever disease we've been diagnosed with, its an uphill struggle, isn't it!?
Hiya just thought I would let you know, that CFC is started with a virus and Fibromayia isn't .
You might already know and the only reason I have found out is that my husband was diagnose with CFC two years ago and of course we live together and what he was saying was very similar to me but he has the constant bad heads which I only get when I get over tired or stressed.
This was explain to us by a specialist at the hospital they thought it could have been a Brian tummer with my husband at first but all tests showed up clear (thank you God. ) so we are happy it's just CFC if you can understand what I mean at least we still got each other.
Sorry to bother you but not sure if you had heared what the diffrance is.
Apparently CFC can burn it's self out as well were as fibromayia can't .
I hope this helps as I do think it is important we know the facts as it can be confusing and therefore education is important for awareness & our cause.
Isn't it funny how people ie hospital doctors fob us off. Let's put it this way if my husband ends up with more than we bargain for they will be trouble.
Sorry but felt it is best you are i kept informed as my Fibro was probably most likely triggered by Glandular Fever (Mono). It may be that their diagnosis is perfectly correct however I cannot really comment.
Know you did right. Bestto know we have been fighting for 12 months just to get my husband sick pay and only won because he has been formally been diagnosed withCFS . A guy rung up and told us that the doctors had found him fit for work but due to a section of a section 39 he would give him 15 points because he would be a dangerous to others and himself.
He was a waggon driver
60 years old worked all his life and we have had to fight to get £108 a week. Who in there right mind would give up £400 a week for that. Life has changed a lot but we are managing .
I know exactly how you feel, every day is a struggle, just woke up after about three hours sleep feeling as if I'd been run over by a bus! But , hey life goes on, just have to accept the cards we've been dealt and carry on!
Welcome! Sorry to hear you are having a rough time. It is difficult to deal with and accept. Finding accepting it a bit tough right now. I am in my 6th day of the worst flare up yet and i am finding the daily grind very difficult. I am trying really hard to stay positive. We are on our way to the coast this morning to see family and friends so i have a fun weekend ahead (if i can stay awake for it lol). Take care. Speak soon no doubt.
I have read your post and thought it mirrored mine when I first joined I a, about to do another post so if you have time to read it then you will se were I am in my journey to acceptance
Welcome Dianne
Hi Steve,
I would like to give you a big warm welcome to our fabulous informative community site. You will find we are all in the same boat (pardon the expression) I am a fairly new member as well. The members here are lovely giving support and comfort where needed. Looking forward to reading your posts.
I have just been relaxing a lot. Pain is still there along with the spasms. I think I know what I did and if that is what happened it's just going to take some time. Being allergic to do many meds. I can't have surgery which they will probably mention as it has been in the past. It will just need to fix itself. Just painful. Thank you for asking that was very sweet.
Thanks for that bit of info I never connect IBS with Fibromayia as I had a funny bowels before but since getting fibromayia it's got much worse to the point I can be sat on the settee and still not make it to the toilet.
Like today I didn't have to go out so I didn't it's now 9.15 pm and if I had have been out would have not made it to the loo, unles sat near it.
I never well very rarely go outside until I have been to loo.lol.
But never put it down to being part of it.
Thanks might understand a little more now. To think I have just had a tummy tuck with umbilical hernia repair hopping it would help as my stomach wall was split. By the way had to pay private NHS didn't want to know until all if my insides we're bulging out.
It hasn't made any diffarance to my bowels but no pian from the hernia now,
It is just something that I have personally noticed over the years, and is by no means a medical fact.
As you say though, it is good when something clicks into place that has probably been in the back of our heads for a while, but until we see it in black and white we don't really make any sense of it.
I am very glad it may have helped you.
At least now, in times, of stress you can be prepared xx
Welcome to this fantastic site, I've been on this site for about a year now, the amazing people on here always know exactly what to say, when you reach the end of your tether. I have suffered Fibro since about 1994 but diagnosed in 2000, i struggled to work on until mid 2002 when my fibro defeated me, up until now I'd forgotten what a good nights sleep was, well i say a good night's sleep! i am at a point of sleeping almost 8 hours a night, but the feeling of having run 3 consecutive marathons when i wake up still exists,my GP assures me it will come right, i will list my conditions so you know your not alone in multiple conditions, mine are :- Fibromyalgia, underactive thyroid, pernicious anaemia, IBS, headaches (migraines) depression which i'm on Escitalopram 20mg, & that is what is helping me get my sleep patern back to normal, my GP said restorative sleep should follow, so fingers crossed etc, i also have lichen planus (not a physical thing) frontal fibrosing alopecia, contact dermatitis, allergies to nickel which is in a lot of things I'm in contact with daily like keys, coin money, door handles etc, i am also allergic to perfume & fragrances (fragrances not same as perfume) so i can't even use air freshners, or fragranced kitchen or bathroom cleaners. i am on the thyroid site also which is linked with this site, someone there suggested i get tested for Hashimoto's disease, if that is a positive result & I get treated for it, my Fibro pain would go, so i will look into that a bit more before I bother my GP, but it is something to consider for all the other Fibro sufferers. I'm happy to have made your acquaintance, take care hugs 😃 Honor xx
Hi Steve ...I feel the need to highlight in big letters your words "I FOUGHT AND FOUGHT AGAINST THE FIBRO BIG HUGE MASSIVE MISTAKE".........time and again Fibros repeat this scenario, apparently refusing to learn from others experiences in this respect.......what do any of us have to say or do to stop others following in this disastrous route? Fibro cannot be 'beaten' into submission... only respected and worked with, and by carefully living 'in tune' with our bodies we can, as Emma (mdaisy/administrator) says, aim for our own individual 'optimum health'.....at whatever level that works out for each of us.
I haven't been on this site long but everyone is lovely,and I have found it nice to be able to talk with other people who really know what you're going through.
I was diagnosed with fibromyalgia a few months ago and cfs after many tests over a few years.it all started after I had treatment for cancer.
So no matter how you're feeling someone is always here!
What a lovely pic of u both. So sorry u r suffering from this terrible illness, im in the same boat too, hope u can get some answers u need on here . take care.x.
I red your story and must say I admire your positivist in spite of all the pain..all these years.
I am here in this community to pass a message of hope..I had a calling 2 years ago as I was in the same situation as everybody here..
Same as you actually..I had the whole package..lol arthritis, fybro, ibs, depression, high and low blood pressure...I mean the whole package!
And only 30 years old...
But with the birth of the baby arriving.. I saw this video on youtube of this guy that was extremely overweight and decided to lose weight so he could run with his son and play with him..seeing grow up.
That hit me..in such a way man..
Doctors couldn't help..like you guys are going through now...and I decided that enough is enough!
So started researching on my own reading every book out there.
started following their advice...oh my God! 3 months lost around 4 stone and .just fixing my diet and lifestyle.
All my life struggling..and 3 months is all it took to improve my health..
Even so all my friends family and work colleagues...said I was looking sick lolol..when they suffer still with the same...people are funny..
I started helping my wife with serious liver problems and migraines, my parents..76 years old and with arthritis and gout....a cousin with arthritic psoriasis..who improved their health.
Man this was an awakening call for me..
Never looked back.
This message comes from the heart..and not to show off..but to tell you guys that..there is a totally different world out there..where pain and disease is not part of. just happiness with those you love most.
It happened to me...my 2 year daughter is fantastic..energetic..no eczema..no crying with fevers..doctors are all surprised cause all other kids come in suffering..and we just went there for the weigh ins..
If you need any more advice please contact me privately here..
you really don't need to suffer and use it as an excuse to just let go on what life has best.
I can help.
Sorry long story I get a bit emotional..with my journey.
Any results mentioned by me here are not typical, people that achieve these results worked hard to improve their health. If you are humble to follow instructions and learn. I am here for you.
Ok then let's have it. I have lost 45 pounds and feel lot worse.
I only eat salmon salads chicken every thing fresh. Don't drink alcohol water mainly.
So give us a tipical week we can follow I will do over and over again let's see if it helps me I will give anything a go fornsomebsleep pain free energy.
Hi Steve wellcome to the fold i have only been on here a few weeks myself,you will find out that they are very helpfull,after reading all your symptoms i think i can say we can all relate to them,i was wondering that some of your symptoms it sounds like you could have IBS, i dont want to give you anything else as you have enough to contend with,but if you have got you will have to look at your diet,because if you eat the things you should not,then you are putting yourself in more pain,i have IBS alot of us have as it can come with the fibro.once you get it under control its much more managed.Hope i have not made you feel down,as thats not what i intended to do.Lots of love,hugs.xx.
Welcome I've only just diagnosed in January although had symptoms a couple of years one of my worst nightmares after pain is the getting lost or losing the car which I often do but when I'm lost the feeling is so overwhelming I can't even use my phone to ring anyone to discribe where I am sometimes it can be hours sometimes a few seconds it was nice to read your post to know someone else has many of your symptoms especially the getting lost thanks x
Hi Steve, reading ur piece was as if I wrote it about myself. I was diagnosed in 2000 but I think I suffered for a good few years before that. Just over a week ago I pulled a muscle in my back & I know now that it won't right itself because of my fibro as I ve had the same problem with my elbow & neck. It frightens me that I'm getting less & less mobile. Anyway welcome to the group.
Hi, welcome. I don't know a lot because my symptoms started this year. I am doing the rounds of Drs and tests( another MRI Monday). Currently, the thing that bothers me the most is skin burning and leg tingling and feeling dizzy/off balance. I have had aches and pains for some time because of increasing arthritis and osteoporosis so I'm "used" to that. I hate how this is affecting my life. I do what I can do
Hello Steve I too have fibro sorry to hear what your going tho I also have a history of eplisply panic attacks and ancisy I'm not coping well with my fibro at the mo had it nw for 5 years and one month work ain't gd at the mo I'm getting stressed out and work I'm doing is making my fibro worse
I have only just joined my self. It's nice to have you but sorry at the same time you are suffering. Hope you understand what I mean.
I think you have already come a long way because you have excepted your condition that's the best the best thing you could do, some how it makes it easer.
I have had fibromayia for a long time and it was only when I excepted I couldn,t do the things I used to that in a funny way felt better.
It was my couison who said to me one day when I was so upset( she has ME) she said I get up and depending on how she feel if it's a bad day she said I just give in go back to bed if necessary write off that day and start again tomorrow.
Mine was so bad I ended up in hospital several time with chest pain and the heart machine doing summer salts.lol not funny!
Any way cut long story short I ended up having an anagram because some of our test made me sick or past out.
Well it turned out it was not a heart attack as they said in the first place, it was the muscles round my heart in spasm making it look like an heart attack was not nice and very frightening. This happen several times.
So now when this happens I take mophine and try to relax.
The only thing is with this is in the advent I have an heart attack I might not know so me and my doctor who is amazing by the way not many about like him. If with in an hour it doesn,t go I have to go to hospital.
So I know where you,re comming from but I must say you explain it very well.
I have just filled my PIP form in so just waiting to hear back and this is all because they changed the name it's not long since I filled DWP. I really hope I don't loose my car.
Because like you I have trouble with my bowels don't Evan make it to the loo if I am at home some time. Lol two shower for me that day. Like you say if you don't at least try to make lite of it well, you might as not well not be here. I have just had a massive operation to put my bowels and hernia back where they belong and that didn't go to plan had it done again 10 days later and still waiting for revision in September or October
Just keep chin up and do the best you can. That's what I try to do it's impossible some time .
You are like holding a mirror up except I'm five years older and much better looking 😂😂😂 as you said you've got to laugh or you will cry! I also have RLS restless leg syndrome, bulging neck discs and insulin dependent diabetes.
Like you good days, duvet days and all I between. At the moment thr focus is mainly on the cronigue fatigue and not having the energy or inclination to do things I love doing its more disheartening than the pain. Especially with a rough and tumble thirteen year old. I used to grit my teeth and fight I and actually made myself sicker and I am unable to work and bored senseless but have projects helping people that make me feel like a useful person again..
I would be interested to know what Meds your on, any complimentary medicine or activities and how you handle intimate relations. The other big bug bear i have is planning ahead. Dating you'll be one where at 1400 when you can't even get out of the house.
Thanks for joining our merry group, nice family feel and mainly British so drugs, NHS ad prescriptions the same
Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I want to genuinely wish you all the best of luck.
I know that feeling O so well. I was told that I had charcot Maria tooth disease many years ago so I just went along with it as it was nice to know what was wrong. that was 9 years ago. well I was sent for lots of test only to be told that I didn't have it. I told the pain clinic more poking about. Sorry, you have fibromyalgia. My very dear friend has it and without her I think I would have topped myself. I think that no sleep is the worst getting up feeling totally drained. But it I nice to know that you can come on this site and have a bloody good moan and not be judged. My children have no sympathy at all for me. so welcome to this great site.
I couldn't write a better likeness to what I am suffering with myself. Glad to meet someone who is exactly like me.......Hello my name is Beverley, glad to meet you Steve. What medication are you on? And does any of it help you? Does it kill the pain? For I have yet to get anything to kill/dull the pain.
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Just introducing myself as a new member :)
I want to be understood!
i just want to cry today :(
Sometimes I just want to scream!!!!
all i want to do is sleep,
