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Fibromyalgia Action UK
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How did your fybromalgia start ?

Just wanted say hello !!😁😁 wondered how your fibromyalgia started.

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Welce to posting. I have a feeling that mine actually might have started in childhood as even when I started at school I seemed to be having mysterious aches in my legs that no one could fully explain. As I got older these aches tended to get worse and I was having burning sensations in my calves again for no discernable reason. I then has costo chondritis very severely but it didn't seem to respond to the usual treatment I had pain and burning sensation all around my rib cage. The different pains, fatigue etc then got worse until I unfortunately had to give up work. Both my GP and a Pain specialist that I asked to be referred to confirmed fibro and it was also confirmed by a physio, acupuncturist and Occupational Therapist.x

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Wow that's such a young age ,how did you cope? or was it the fact you didn't know any different. Sorry you went through did x

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I think you just get used to it as I have had poor health from an early age but it has made life difficult. I had elderly parents who both had a tough life and I was brought up to get on with things and never whinge, stoicism was valued in my family. Dad was still working when he died at 70.x

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Yes it certainly make us tougher!! My parents were the same stuff upper lip and get on with it !! Wow that's a good age still be able to work at.do you think it made it harder for you to open up about your illnesses?because the way you where brought up.

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My father had alot of illness so he was more understanding but Mom was really stiff upper lip she joined the forces before World War II and served in Africa and Egypt nearly been killed when the ship they were in was torpeoded so inclined to tough everything out. You would never have been able to say you were depressed as she didn't believe in depression she definitely wasn't a cuddly sort of Mom.x

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That's hard when you dont get cuddles from your mum.!! Think it was the generation of the time quite hard inside,thank goodness you had your dad on your side.x

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I wish I knew how my Fibro had started I would tell it to stop(haha)

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Definitely skit have a few choice words to say to it !!😁😁hugs

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Its angry and it brought friends. It says hello though so its manners are still there

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You got other stuff along with it at the same time?

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Yes with in a month it was Bipolar 2, then osteoarthritis, then fibro. Other things came after that. All in all been acquiring new things for the last 10 years. I'm only 44, dread to think what the new 10 will bring *soft hugs *

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That's a lot, I have osteoarthritis and some trapped nerves, have wondered in the past if I had fibro, but my pains have been gone a while now so maybe not. Im almost 50 so I know what you mean :/

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Not sure but been lead to believe that fibro can have a "remission" for lack of a better word. I hope though that yours are gone for good :)

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I think I read that it can..

Thanks for being so nice :)

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Haha sound like the freinds need a talking to lol xxhugs

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I vividly remember that one day I was sorting thru paperwork and developed a stiff neck but I kept going. The next morning I just never felt the same again. That was 15 years ago. I was 20 yrs old. I can’t even remember anymore what it felt like before the weirdness that comes fibro. Just wish I would’ve have stopped before my neck got sore.

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Strange how appears through doing a task !!hugs to you .

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Although mine is yet to be confirmed. I believe mine started after a spinal operation. This was my third over two years. I bounced back, recovered well from the other two. I struggled with the third.

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Ouch sorry to hear that ,was reading down to our signal box not cooperating properly, such a delicate area the spine .you in alot of pain?

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Hi feisty-girl. That surgery was back in October 2015. My pain levels fluctuate depending on what I do. I'm learning to listen to my body.

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So to hear that ,yes our body's do tell us if we listen hugs

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I think myself it started after having chemo treatment I just haven’t been the same since then, I keep thinking my life will improve some way but it doesn’t seem to be getting any better.

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Oh Betty sorry !! Do you think the chemo treatment made it worse?I've found mine has progressed from chemo .hugs to you x

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Hi feisty yeah definitely made things worse , I can’t seem to do anything now only go to work and that feels like a battle nearly every day , my consultant has said that he is seen this more and more after chemo treatment

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Oh great they dont tell you that when you start chemo!!sorry its so hard for you every day.big hugs

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Hi feisty-girl,mine developed after breast cancer and subsequent radiation fatigue (I developed a radiation burn where the skin broke down completely and I was left with a weeping sore for a little while, I have had ichthyosis and eczema since birth so very slow to heal) at first I had C.F but as the pains, confusion and muscle spasms etc started as well as the CF I was referred back to the reumy specialist who diagnosed me. Seeing as I have osteoarthritis and spinal problems plus sciatica I was diagnosed with fibromyalgia very quickly- some of us on here waited years for diagnosis whereas I was sent for all sorts of tests and the pain clinic really listened to my G.P’s opinion (he said fibromyalgia only months after the C.F diagnosis) so I am really one of the lucky ones in that I have been sympathetically received by all my medical support- none of my specialists for my various problems has been scornful of the fibromyalgia, I have not suffered the problems that a lot of people have where they have to fight for recognition of the condition. Of course, family,friends and the outside world is a different matter!! My very supportive partner is sure that I developed breast cancer from being on a continuous high dose of oestrogen based HRT after a hysterectomy at 30 ( my dose was never checked or changed as it should have been, I was on it for 17 years!)

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Sorry fybromalgia momement wrote message end of page 😁😁I'm such a plonker .such a hard journey you have been through are you all clear on the breast cancer?I wouldn't go on the HRT you hear so many stories, sound like they failed you their,did you report about the HRT?hugs

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I did report it but the G.P who I was under then has now retired and as I need to see so many different health specialists still for my ailments I am wary of rocking the boat too much- it wouldn’t change my condition now and I think the NHS is so overwhelmed at the moment I am just grateful for the support I now have. I do genuinely feel that I am one of the lucky ones- I have sympathetic medical support and my partner is fantastic. I am still waiting for the all clear on my cancer but I haven’t developed any new tumours so fingers crossed. I am grateful for the wonderful facility that this site provides, we can ask for advice from people who really know what it’s like to live with the condition every day,just let off steam about it and unsympathetic medical staff, family members and other people who can be so nasty or just ignorant,it is a great place to visit for me, I look forward to seeing it in my inbox every day. I am an optimist and although like everyone else I’ve had bad times and sometimes been frustrated and frightened by the pain and other aspects of this condition it is better for me to try and laugh at myself and be positive and cheerful-after all,I’m stuck with me 24/7! 😂😂

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Yes definitely sometimes best not to rock the boat, only so they would watch others on HRT more closely. You sound like a amazing lady !!yes definitely have to laugh at ourselves life is to short not to 😘 keep my fingers crossed you keep the all clear hugs xx

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Thanks. xx

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Think mine developed after my dear mum died.Maybe all stress set if off then health went down hill giving me more auto immune diseases etc

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Sorry for your loss !! Sorry your health has gone down hill, seems like when you get 1 immune disease you are prone to more.hugs

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Oh wow you have been through a whirl wind !!with your health.sorry you had to go through all of that hugs x

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Hi I think mine started after the birth of my youngest daughter I was 38 when I had her then two weeks after she was born I found my best friend dead I have bipolar and went on a massive high we were put in a mother and baby unit at the mental hospital while I was in there I started getting aches and pains everywhere eventuality I couldn’t move I couldn’t pick up my angel every thing was excruciating I was diagnosed with RA and given steroid injections that was great but unfortunately didn’t help the bipolar I’ve been diagnosed with 8 different things the past 10 yrs by various drs i changed hospitals a few years ago as I felt they kept blaming everything on bipolar I have a proper diagnosis now of pbc lupus OA STC fibromyalgia and severe insomnia at the moment I really just want to be able to go to the loo out of everything I have the two things I’d love is sleep and to be able to go to the loo I think I could cope a lot better if I just had help with those things

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Oh hun I am sorry you lost your freind ,hard especially after giving birth and not being able to pick your little angel up.seems like you've been through alot medically to. I can definitely relate to the loo hun I have crohns disease,and we have 5 in the house with 1 loo nightmare 😁😁 cant you go to the loo then?

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Sorry just noticed this reply no I have real problems going to the loo it’s like trying to push out a concrete bowling ball they’ve tried everything it’s a nightmare I’ve stopped eating solid food now and have a liquid diet it’s actually helping a bit but it’s only been a few weeks the consultants told me if I’d been born ten years later they could have fixed it typical eh 🤨 I’ve got the best husband in the world and my kids and grandson are my light so it’s not all bad 😊😊

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Mine was officially diagnosed 11 years ago, after years of tests and being sent to every specialist I can think of! In the end it was a routine visit to my neuro, who diagnosed me. I basically said to him- look, they’re sending me now to a neuro because I’ve seen everyone else, can you help? He asked me my symptoms and done some pressure point tests (not that I knew at the time what he was doing!) then he turned round and said, you have Fibromyalgia, I’ll put it on my letter to have you sent to a Rheumatologist to confirm, and I’d advise you not to google it! And that was that! When I went to the rheumy though, we went through all my history and they think I’ve actually had it since my early teens at least 🙁

Oh and of course, the first thing I did when I got home was google it! 😳

My health has just gone downhill from there, I have a list now of my illnesses and I think most of them stem from my having FM!! 😞

Hope everyone has as good a day as they can, if it’s not a good day, at least it’s a day that we’ve made it through. Big gentle hugs to all xx

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Wow sounds like they did a good job eventually finding your fybromalgia!! Of course so easy to Google everything know !!sorry you had go through all that hugs x

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After a accident.

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Sorry to hear that Pbyllis hugs

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I was the victim of a very nasty crime back in 1990, I was I injured at the time and still to this day have PTSD, my pains started shortly after this incident. I gradually got so bad I have almost now lost my mobility and have widespread pain , arthritis and now also COPD due to myself smoking so much after what happened to me, I wasn't diagnosed until 11 years ago it I believe I've had this since this happened

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Oh my so sorry to hear that not surprised you PTSD from that.you have alot going on health wise!! What you do to lift you mood? I'm always around you like talk speechless _1

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Hi

I'm sorry so many people have to suffer. I was diagnosed September 2016. I was sent to a rheumatologist who didn't want to know once she knew it was fibromyalgia. I've also got IBS, diverticulitis, gastritis, depression, costochondritis, sciatica, under active thyroid, diabetes, oa in knees and one or two toes, Nash (non alcoholic steatohepititis) caused by meds from my drs over the years, spondylitis to name but a few!!! Hope you all have a good night's sleep. As you can see I'm still awake early morning. Love and hugs to you all Lynne xxxx

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Blimey hun you got it all!!hope doesnt flare up all at the same time ?sorry you up so early ,you in pain ? Hugs done it again Lynne replied myself lol 😉😉

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Hi i have had chemo twice even though ive never had cancer and definately would say its made my fibro worse i suffer chronic bone and muscle pain 24/7 in my thighes,hips and knees ☹

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Sorry will have talk latter being admitted to hospital x

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Good luck feisty-girl and take care x

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Mine was from two bouts of glandular fever - second time I told the doctor I had gf as exactly the same symptoms as last time he told me wasn’t possible but sent me for test and came back as gf .. then was made worse after about 5 years latter I fell in a cinema and hurt my back never been the same since

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Sorry if dont reply very poorly in hospital, severe crohns disease flair x

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Hi everyone I am new to this site I have always had good health till I had a heart attack after leaving hospital and a truck load of pills my health is not good ,doctor said that he would change my statin but after countless blood tests and hospital visits one more this week . I now can barely walk after sitting down pain around waist and legs arm and hand pins and needles in all fingers even my jaw hurts when eating . The problem I have is doctors have ruled out fibromyalgia is this a common reaction? ,thanks.

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Hi sorry to hear that !!have you seen a rheumatologist?

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About three years ago I think (still no formal diagnosis after being shoved pillar to post I've kind of given up and I now tell people it's fibro/arthritis) I was working in a job I loved and I had taken up running - was really fit and then bam I felt as if I had flu and couldn't shake it off. I was told it was post-viral. But then my eyes were affected, my balance, the fatigue was dreadful and I had to take a year out of my job (unpaid leave) whilst they investigated. I had just about every test you can think of - they thought I had MS, then Lyme disease for a while. Here I am now with flare-ups every so often and then sometimes almost 80% of what I used to be but I've never recovered fully. Sorry long post. When I see people posting that it was stress/traumatic experience/operation etc I wonder why I got it. my last GP appointment over a year ago told me that I had 'some kind of inflammatory arthritis'. Ha!

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Really sorry you had to go through so much !!hope helps you to talk about it on here with other fellow warriors.

Sorry couldn't respond earlier been in hospital with severe crohns flare.hugs

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