Can someone please explain😲😲

Hi all,

I know you've all asked this a Dozon times - how come an illness experienced by thousands, drawing thousands of pounds in funding for research and seeing so many people claiming - or trying to claim disability benefits is still not recognised, diagnosed or accepted as a disability????

How come with Fibro Action, Fibro Awareness and many other forums and charities, research, papers and American research results, we still can't find a doctor/specialist or clinic to help us deal with this b****y illness.

I'm totally fed up with being told to'loose wieght and exercise' even though every pill they give me 'may cause wieght gain' and i've had to give up full time career for part time work and I'm still struggling.

I am now writing to the NHS to get some answers. I've recently moved to Scotland, partly because without me working full time retirement was seeming further and further away. I am now having to go through the whole process again, starting with - guess what - a sleep study - in case I have 'sleep apnea'

So, my question now is, why do we put up with this??? Well not any more, so, anyone who has had any dealings with the NHS or goverment about the recognition or categorisation of this illness, please let me know about anyone or dept who has been helpfull in this area.

I will keep you all posted on any progress I make.

Keep fighting, if it any help to anyone, I've found 20min cat naps and 1 day 'crash days' (one day of doing very little, laying in, warm bath soaks, spa days, foot spas, walks on the beach and the food you really enjoy) really help me get through, most of the time. 🤗🤗

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  • Thank you for posting this. I was laying here in bed feeling awful today, thinking very similar thoughts. Why don't doctors know what Fibromylagia actually is?? And what if it's just a blanket label for lots of different illnesses they know nothing about? I've had 3 labels so far: First it was M.E. in 2004, then Lupus in 2010, and now Fibromyalgia (diagnosed in 2016). It all feels the same to me despite the change in labels - fatigue, pain in/around joints, flu-like aches, muscles pain and weakness, and now more and more burning pains in my arms and legs. I feel really frustrated!! I still don't feel confident that the doctors really know how to treat us! They just try us with different pills! Pah!

  • I have to agree with your idea that fibro is just a " blanket label". I have Rheumatoid Arthritis , Osteoarthritis and Fibromyalgia - diagnosed in that order ! I felt that Fibro is just a label to give me when they can't decide which group other symptoms fall into.

    Jacqueline

  • Hi lizard57,

    I'm sorry to hear you're being told to just lose weight and that everything will be better, it's so frustrating to hear that when you know the pain you're feeling isn't your fault!

    I just wanted to take this opportunity to let you know that one of my friends Adrienne has created a petition that has gained a lot of support of the last few days regarding getting fibro recognised as a disability.

    She has also had a meeting with her local MP who is more than happy to support her and she is currently in the process of that.

    If you would like please sign this petition to help her with this change.org/p/uk-parliament-... (Admins: I don't think there is any promoted petitions or anything on here, I did try and check!)

    I wish you the best of luck with getting in touch with someone! I would suggest your local MP might be a good place to start?

    :) xx

  • Have signed!

  • Great! Thank you so much! :)

  • I've signed too everyone 😊Xxx

  • Excellent, I'll sign, what part of the country are you in? I think the more of us that can do this sort of thing the better, maybe then we'll get some help.

    Good luck,

    Lizard57

  • Hopefully and thank you! She's spoken to the chesterfield MP, so sorta Derbyshire I think? :-) where are you based? :-)

  • I've signed, I'm in Scotland, but that doesn't matter, let's hit them from all directions, then maybe well get heard. 🙌🙌

  • Definitely! Thank you for signing! :) x

  • Signed and shared. Good luck. Xx

  • Thank you so much for signing and sharing! :) xx

  • Cooking on gas now🙋

  • Yeah it's going really well! There's also a FB group if you search

    '' Fibromyalgia- Let's Get It Into Parliament And Classed As A Disability ''

    Then her page should come up, she puts updates on there about how it's going and everything like that, just in case you want to keep up to date :)

  • Hi there. I'm just replying to your post as I feel totally the same I have had a terrible 3 days feeling fog unable to hardly walk being unable to even get dressed and live the life that others call NORMAL. I try my hardest to act normal and not show my pain but some days it's just far to much. It sounds like self pity and as if I should pull myself together. It I've suffered with this illness for over 14 years I have M.E fibromyalgia and polycystic ovary syndrome. To top it off I was in a career I loved within care and my marriage plus relationships have broken down. I was entitled to PIP that I had to fight for ages to get only to have to appeal in December as they had cut the rate from what I had previously. I'm now getting the lower rate and all the judge could say was maybe I was awarded to higher in the past. I have deteriorated further what with now having moved and having a bath lift raised toilet seats equipment to help with cookin /an urn type kettle now so I don't have to lift anything plus I've had to get an automatic car I feel more and more diflated and humiliated not just by some professionals the legal system and certain friends and family. I'm all for helping get this /these horrible conditions recognised it's not just the money side of things it's how it effects the persons life the families lives and generations now and to come who have to deal with it. I think in my experiences the health professionals know there's something but really don't know how to treat or manage the condo on/conditions as there are symptoms but no tests that are concreate with results. ( E.g. I'm glandular fever in blood tests it shows)

    I'm also in agreement that there are trials as well as American /English trials / experiments forums and fibro /M.E groups as well as some health organisations and professionals that are trying to help so credit where this is due.

    I so feel for you lizard 57 as with all whom is on this forum. I agree with all you say too and wish you luck if you need help or support I'm willing to help too or If any others have had similar to myself or advice please get in touch I'm in all full support for change and willing to help myself and listen to those willing to help and if I can help others I will.

    Keep trying to smile everyone we will get there in the end. But for now as hard as it is all we can do is support each other keep fighting and take each min hour day by day. Gentle hugs to you all x

  • i too have pcos along side fibro - sometimes i wonder is there a link in some cases. plus i'd just like to say i completely understand you. you aren't alone x

  • Appreciated, I think the pressure needs to come from all of us, strength in numbers - and all that.🙋

  • Sorry flower 8819 for not replying sooner I've had a few bad days.

    I totally agree with you I too wonder if things are linked too but it's also proving it.

    Thanks for saying I'm not alone. How have you managed with your Pcos? I hope you don't mind me asking.

    I hope ur feeling well many thanks again.

    Gentle hugs

    Kaz xxx

  • Hiya Kaz,

    The Pcos, it's really quite hard to manage although i do take a hormone tablet, or i did. we are ttc (trying to conceive) and i've been told not to take it any more, my last period was in 2014. i have the kind of pcos that makes you fat, hairy and not have any periods. the not having any periods bit i can put up with- what's not to like there it saves me a fortune. i should be having regular cycles with ttc though. i'm approaching 30 and husband is approaching 40 and we still haven't managed to have a baby after being married for 6 years. when i first noticed my fibro i thought, genuinely it was pain from my pcos. it was around the bottom of my back where i usually get pain from my ovaries. i don't mind you asking at all as long as this is a locked thread lol. tmi much? lol

    to sum my pcos up:

    i've had a full man's beard since the age of 14. i've had about two periods in my entire life but both of those periods were hugely heavy and lasted both each around a year of bleeding. (when i tell people that they give me an i don't believe you look) i had to have time off of school because i couldn't go where i was bleeding so heavy, bleeding through a night-time pad at a rate of one every 10 mins is not normal!

    i've tried various prescribed lotions potions etc for my pcos, for the hair and also tried metformin to help me lose weight and to help my cycles, the metformin didn't agree with me so they put me on a slow release one which didn't also agree with me. i had to put my foot down in the end and told them i'm not going to spend my life throwing up sat by the toilet so i'm stopping them! that's all metformin did for me. make me throw up- a lot! .. lol

    i have been to a fertility clinic, and had a scan - i have the grand total of five eggs. which is a blessing. but they won't do anything further until i reach 83kg. (182lbs/13 stone) rough conversions. at the moment i'm around 110kg. (242lbs /17 and a half stone) i have to lose the weight or they can't help us ttc. although i started at around 25 stone/ 158kg / 350lbs. i've changed literally nothing. i saw i dietician, who told me my diet was already perfect and to exercise, so i started going for a little walk every day- that's when i noticed. it was actually getting harder to walk for 5 mins everyday instead of easier, i knew something was off because almost everyone that you speak to says once you have exercised for a bit it gets easier as you go. for me it was getting harder. which was another indication that there was something up. i'd go for my five min walk and come back and need to go to sleep! i knew something was up so i went to the doctor, this is how i got diagnosed. with all the pains and migraines muscle pain. all unexplained. they did various tests on me blood tests scans etc. and it all came back fine. the only scan that didn't come back fine was the one on my foot but i'm not gonna go into that here.

    to manage the body hair i basically shave it off before i go out of the house/if i go out of the house. it's not nice having a beard and being at school with 14 year old kids. they don't understand. i got terribly bullied because of it- even my own mother told me i could join the circus which definitely wasn't helpful!

    i just take everything a day at a time- i have multiple conditions and so i can't do anything else. i have to keep cancelling appointments because i'll wake up in pain so much one day and be like oh god i had my doctors appointment today and have to ring them and cancel- then i feel bad because i've not been able to go and possibly wasted an appointment. or i'll wake up in a super depressed state of mind and be like "why should i bother- life has given up on me" or i'll wake up and be manic as hell like... "oh my god look at the state of this place it all needs cleaning right now.. now nownownownow!" or i'll wake up and i'll just be slightly in pain. my mood will be semi okay and i think i'm going to have a decent day. as soon as i manage to get out of bed that normally changes though. i've gone on a bit haven't i? probably because i'm awake because i can't sleep. lol

    if you ever want to talk inbox is open. x

  • I must admit its really frustrating especially when you hear from a family member "oh doctors say its fibro willy nilly and you just need to exercise and go for walks etc" gggrrrrrr. I had never heard of fibro until my GP told me and listening to others here its hit n miss depending on your GP if its recognised at all and whether you get the right treatment.

    My GP after years of wondering what the hells wrong with me to finally be told its fibro, sorted out hydro sessions for me and now waiting for 28th March for Rheumatology dept to confirm his diagnoses. Work is giving me the run around but Im trying to take the control by throwing the ball back in their court so Im not being set up to fail.

  • Just like everyone else I think this a lot, all the same questions, (except I'm not dealing with NHS)

    I really lean to the blanket, well, if fibro is just over active nervous system, then that means if the slightest things is off balance for us then we will feel it as a lot worse.

    I'm not sure. It's frustrating, the moment I have a thought of figuring myself out, I know I'm kidding myself because things change so quickly. I can't seem to get my muscles balanced, (but that isn't fibro (if just over active nerves) that polymyalgia or Myofacial pain syndrome or something idk.

    I tell people on short hand- I have muscle issue, but to a friend I explain things- :) its complicated- is usually how I end it. :)

    I have been experimenting lately by not juicing and just ACV drink along with Myofascial release, stretching and exercise and cbd oil (fish oil when i think about it). I'm functional but on a very fine line. So I know it is actually helping, because before if i wasn't juicing I would quickly become unfunctionable, but now not so.

    Anyways I'm going off subject.

    I believe I have an over active nervous system (It explains a lot), so if that's fibro then ok I believe it.

    Its frustrating because it doesn't matter what I believe, its unsure, so ******* it. I just have to take a deep breath and hope someone with more knowledge than I figures it out. Hopefully sooner rather than later.

    Take care×××

  • That's the thing though - who would know better than you ?? No matter how clever, however, if it was you experienced and knowledgeable about the illness, working WITH someone who's 'clever' and knowledgeable, now that might really produce something we could all appreciate. 😂

  • Hi everyone and lizard 57 Well I don't know about you guys but I'm in surrey and I don't know about you all but if anyone wanted me to go for research purposes or be a guinea pig lol for the help and treatment in helping fight this horrible condition and illness then I'm up for it is anyone else??? Take care all nighty night may you all and I hopefully get a restful night? ⭐️⭐️⭐️Xx

  • That kind of efficiency and common sense might cause some sort of massive implosion killing millions and sending our society into chaos and ruin.

    ××

  • Hi lizard57

    I agree with you completely my friend but you may not like my answer to your question? I personally feel that there are too many people being diagnosed with Fibro who do not have it to start with? I think many people have complex medical problems that are being lumped together and they call it Fibro! This in itself can make it harder to determine what Fibro really is?

    Secondly, many conditions take a great deal of time (multiple generations) to achieve the recognition that they deserve. This can be seen in the way that Multiple Sclerosis or Cystic Fibrosis were perceived as mental illnesses prior to brain scans. I personally feel many doctors still perceive Fibro as a mental illness at this time?

    I truly hope that writing this (as an admin) does not come back to bite me? I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • I totally agree. The rheumy saw me and blood tests came back neg for Sjorgrens said, if you want a label, fibromyalgia, there that's your label !, When you come up against something like that what hope have we got? Needless to say am seeking second opinion. I'm not ready to give up yet. Wish you all, as well as you can be x

  • Good luck Lottie D keep fighting I had to as well hard I know when you feel ill but it has to be done to get answers sometimes hey keep us updates gentle hugs kaz xx

  • Hi all,

    Far from not liking your answer 'Admin', I totally agree. The more you read, the more patterning you seem to see.

    History often includes;

    very active, -I had two jobs and a young family.

    High levels of excessive exercise and hyperflexibility when young - I used to dance.

    Excess stress - I was a young career for my mum, and my dad in later years.

    Fibromyalgia seems to be the 'label' for burn out and all painful associated conditions - Lupus, M.E. osteoarthritis, rheumatoid arthritis, etc etc until someone bothers to drill down and establish which, if any of these it may be.

    Personally I don't care what they call it, I'd just like someone to listen, understand and work with me to ease the pain and increase my enery levels so I can get through the day, (and night!!!)

    😴😴😴

  • totally agree also. i can see a trend emerging the more i read on here. sometimes i do wonder if it's just that doctors have exhausted every test they can do so they send you to the rheumy and they diagnose you with fibro as a "last resort" i think i've had practically every scan/blood test/test/therapy that there is available- and i insist on copies of all the results so that i can keep them and analyse them myself. i have fibro and MH conditions but i don't believe they are one and the same.

    i just wish something could be done. i pray to god every day/night (if you're not religious please don't take offence i'm not pushing it on anyone) but i do pray that god will help us all and he will. i'm down to using candles and gemstones and praying as i'm losing all hope of ever being normal again. i want to be able to hold down a job- Heck! i want to be able to be able to stand up for more than 5 mins at a time! lol

  • I know fibromyalgia was a blanket term back when I was first diagnosed in the 90's but in the last 18 months or so Dr's are aware it isn't a psycho-sleep disorder, it's got little to do with arthritis & the basic premise behind the medical establishments thinking has been disproved. It seems it is a disease of the central nervous system , an organic brain disease or disorder with sufferers sharing up to 90 genetic mutations in common & these account for many of the symptoms & difficulties we as sufferers have. I have sadly lost both copies of the most recent studies due to PC death , but I'm pretty sure one was published in the American medical journal " Vanguard" or "The Vanguard" . My Dr was aware of these recent studies & subsequent results though I'm aware many are not.

    Also can I say it is with complete horror I hear from you for the first time fibromyalgia isn't classed as a disability. I've had my diagnosis for over 20 years though I do have collapsed & fused vertebrae in my cervical spine , I still find it difficult to believe it's not a recognised disability , as fibromyalgia is responsible for most of my physical pain as well as progressive debilitating effects which are not considered when diagnosis takes place...For instance I've gone from being a muscular well built 6"2 chap of around 13 stone to under 9 stone in the first few years of my illness & despite extra calories, prescribed nutrition drinks 5000 cal a day diet etc , I never put my Weight back on. As recommended I began a regimen of light exercise despite my body telling me it wasn't a good idea.... Within a few weeks of very light exercise I had bleeding between my cartlidgeonous tissue & joints in both elbows & knees , a lot of fun having it drained off on a bi weekly basis until the already inflamed membrane stopped haemorrhage & recovered from the walks & few supervised aqua exercise sessions for those with poor mobility, certainly not what you're told when you get a diagnosis. Most of what I've been told is hogwash...That I wouldn't get any better but nor would I get worse , well that wasn't true to begin with.... That it was due to lack of sleep....If I exercised...If I changed my diet....I made almost every alteration to my life to try to find relief & feel like my old self... When none of these worked then came the depression many must feel.

    Im must say I'm very lucky that I've never had anyone suggest that I wasn't thoroughly disabled by this illness. When I got the letter telling me my DLA would end & it was time for me to apply for PIP I was most concerned , as most are & the stress was a killer...but reassurance from my Dr & other care providers that they would support an appeal if necessary with full force on my behalf as I am obviously very disabled indeed at this point, thankfully an appeal was not necessary. Also back when I first claimed DLA I had a home examination by a Dr appointed by the DLA , who approved my initial claim at a time when fibromyalgia really was a blanket term.....I'm finding it hard to get my head around the fact it's not recognised as a disability??? If it in itself is not a disability the effects of its symptoms certainly are.

    I have signed the petition & I shall share & urge all I know to do the same!

    You know how you feel, you don't need telling how disabled you are , all the hogwash surrounding this disease will hopefully be blown out of the water by modern studies into the cause & effects of fibromyalgia as an organic disease & not arthritis with added hysteria, anxiety , weight gain or loss or lack of sleep !, The excruciating pain on a near permanent basis is enough to make the most stoic of us anxious & depressed...To deny the effects as anything but disabling is a slap in the face that you really don't need!

    Please do hang in there & remember the label is not so important if you can get the help & treatment you need. Hopefully the times are changing regarding our treatment in our favour.

    I hope there's a few good day around the corner for you! & If you can keep your ambient temperature around 21°c in this awful cold weather & everyone out there never below 19° it's the only way to keep the painful muscle spasms & spasticity away!

    Here's to more research & understanding of fibromyalgia

    Have the best weekend possible!!!

  • *claps* well said sir... actually clapping was a bad idea, now my finger hurts lol.

    all that aside though i really do agree with everything you've said here. you've put it really well. if i could write like that i think that's how i would describe it- i too have tried to fight it off, do every change imaginable etc but nothing works- you're always in pain!

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