Fibro stereotype?

Hey all

So not asking for any of your personal details but was wondering about age ranges on here like

under 18?

18-25?

26-30?

31-40 ?

or 40+?

I ask because when I was diagnosed a face was pulled at me and then the pain specialist said to me "you appear to have fibromyalgia which is very unusual as most of the people I diagnose are middle aged overweight men"

I just suddenly became curious as a fairly skinny (like size 8) 21 year old female if I'm like the only young female on here who is really struggling. I feel like having all the conditions I have at this age has a sort of pressure in the sense that people expect me to be working or studying they expect me to be able to stand on the bus of an older person or pregnant women gets on etcmy friends expect me to pull all nighters etc and I expect that of me too and for a while I was managing but my most recent flare has lasted about 3 months is simply getting worse and I haven't worked since July. I'm sort of feeling like I'm 21 and I should be doing all these things and I'm just wondering if anyone else feels that way

23 Replies

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  • Hi slippingintochaos

    I was diagnosed in 1980 with Fibromyalgia and ME and was aged 20.

    At that time there was no internet, and so there was even less information available about Fibro and ME at that time.

    I pushed myself through the pain (with the help of strong painkillers and sleeping tablets) and managed to work for 34 years.

    Due to going through a huge trauma everything came tumbling down on top of me and I had to give up work 4 years ago.

    It broke my heart as I loved my job.

    There is help out there. Ask your GP for a referral to a Pain Clinic, Pain Management Clinic and ask about CBT (Cognitive Behaviour Therapy).

    With the right set of meds and other help, like Physio for example, there is hope.

    I do know that we have other members of your age. In fact there is a large variety of ages from someone who is aged 15 to a lady who I believe was in her 80's.

    Don't give up love.

    Lu xx

  • Hi I'm sorry to hear that. I think it sucks having so much pain aged 20 nice to know you managed to work for so long. Something I have noticed is how a lot of people don't understand how horrible it is to not be able to work! I loved my job but I've been on sick leave for 3 months now and I hate it! I was made homeless by my family around that time and that appears to have triggered some kind of flare up or something, so my usual painkillers aren't even touching the surface of this pain nothing seems to help much with the tiredness either and I'm not working mainly due to the fatigue being too dangerous in my profession. I'm at a pain clinic that's how I got the diagnosis of fibromyalgia and facet syndrome prior to this I was diagnosed of 5 other conditions when i was 13/14 which I still have. Pain management clinic has been a bit harder as my doctor reffered me to a hypermobility clinic in London that supports pain management in people with eds but they keep rejecting the referral. cbt doesn't work for me as I have eupd and they found I'm a bit too manic to focus enough for cbt. Dbt was suggested but psychology rejected me four times already psychiatrist has re-refferred me so 5th times a charm I hope. Pain speciaalist reccomends I do not try physiotherapy again as I'm still mid flare up and he doesn't think it will help or that I could cope. Also meds are getting reluctance at present as I od'd a couple of weeks ago my prescriptions have been cut down significantly so I'm rationing them and to be honest they weren't really making a huge difference anyways

    I do appreciate the enthusiastic vote of confidence but reality is most things people suggest I've either tried or been denied haha

  • I am so sorry to hear you also have Hypermobility Syndrome and Facet joint issues.

    I suffer from both of these too so I have some understanding of how you are feeling.

    I hope that you will find the support and compassion of everyone on the forum useful.

    The forum tends to be a little quieter over the weekends.

    I am sorry you seem to have exhausted all options.

    I really hope that you are able to find something that helps you soon.

    Gentle hugs. Lu xx

  • Hey, I was wondering do you know if there are any actual meeting groups? Like for people to meet in person I mean I understand it's be the most wishy washy group ever with people getting flare ups and just not showing up but I don't really have much reason to leave the house at the moment and I feel like if there is a group it might benefit me to meet other people who get it

  • Hi, yes there are groups dotted around the country, go to our Mother Site, fmauk.org for more information.

    I have been on this forum for some years and have noticed the variety of people who have been diagnosed, from teenagers to young mums struggling with children, to grannies unable to pick up and cuddle their grandchildren to men who were leaders in their company and all sorts in between.

    What strikes me is how many of us had good jobs, worked long hours, were enjoying life, went travelling and yet were struck by this chronic life changing condition.

    That was a peculiar comment from your doc as it is more women that get fibro than men.

    I hope you can get some relief from your pain and will feel a bit better soon.

    Kay

  • If there is not a group in your area, why not think about setting up your own group?

    That would give you something to focus on and give you a reason to go out.

    Just a thought :)

    Lu xx

  • Wasn't sure if there were some rules against that on here I've ran support groups before but like on these online forums there are sometimes rules against posting for that sort of thing but this is the only place I know to talk to others with my conditions

  • You would have to run your local group completely separately from the forum but you can enquire if there are members in your area who would like to get together.

    Also Google for a Support Group in your area. There may already be one xx

  • I'm impressed you're still awake... is your being awake a good thing or a bad thing? and yeah I get that although I'm in no state to run one at present I don't mind enquiring if others want to meet for a coffee. I doubt I'd find anyone in my town as I pretty much know the majority but perhaps in the surrounding areas as I'm quite close to certain parts of north london

  • Trust me it's a bad thing!!

    Sleep is another whole issue of its own.

    Lack of restorative sleep is what CAUSES Fibro, it is not a symptom.

    I will meesage you tomorrow (although technically it is already tomorrow !) to explain more.

    Pain is currently keeping me awake more than anything else.

    Lu xx

  • I would love to find a group for fellow sufferers.I live in Lowestoft.Is anyone from around that area interested in getting together.Linjack xx

  • Hi again

    Have you ever had anything to do with MIND? They are an absolutely wonderful mental health organisation who have helped me personally enormously.

    There are courses that you can attend (they are very informal) and you can have a Project Worker that you can talk to one to one.

    You may also make some new friend there.

    Why not have a look at their website mind.org

    Lu xx

  • I have been in contact with mind. I was doing an anxiety course they run unfortunately its too far for me to travel as the public transport links in my area suck so I've had to stop. I get support from turning point who come to see me for 2 hours per week.

  • Welcme to the forum I am sorry to read your post and that you have been diagnosed at such an early age. There are quite a few younger members and some of them have multiple health conditions as well. Many of us have had health problems all our lives but somehow managed and then some stressful thing has happened and fibro has struck.

    From what I have read it does seem to be diagnosed in more women than men I believe up to 80 per cent and often in middle age but many like myself now suspect that in fact we had fibro from quite a young age but werenevee diagnosed. I think doctors are now more familiar with the illness so more diagnosis are made. Look forward to your future posts.x

  • I was diagnosed at 17 but I am now in my early 30's. There are parents on here that have children with fibro that are too young to have an account.

    I promise you're not alone.

  • WOW! This specialist is so wrong that it is unbelievable. The NHS own figures state that women outnumber men with Fibro to a ratio of 7 to 1.

    I am a 53 year old male :)

  • Wow! I thought you were much older than that !! he he xx :)

  • D'Oh! I feel older? x :)

  • I am 65 plus and female good luck to you!

  • I'm early 30s probably had it for years and years just managed till I couldn't anymore lol.

  • I'm nearly 60, female, and I think I started getting this in my 40s. Definitely women seem to be more prone to it than men, and it seems to be prevalent among younger women too. I always feel very sad for young people like you who have this. At least I had all my fun when I was young, fit and healthy - lol! :-D

    I think your doctor doesn't know much about fibro if that's what he thinks. Maybe it would be best to find a doctor who does know more about it?

  • I was diagnosed fibromyalgia when l was 34 n fit and slim too, maybe you can read my posts previous as can hardly type or text anymore. Back in 2005 fibro was more of a cop out illness therefore l got no treatment but now it is taken seriously if you are lucky enough to get believed n taken seriously n not get treatment as they think pain is all in your head. God Bless, Deb x

  • I am 33 next month but was only properly diagnosed last month. But I think I started with this in my mid teens. I remember goung to the doctors with tiredness and poor slerping patterns to be told I was depressed. Then 9 years ago my joints all swelled up. And ever since then Ive basically been ignored. So for me the age of a person doesn't seem or shouldn't be a barrier to a diagnosis. I am on the bigger side, was a 14 now a 16 as Ive slowed down.

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