Introduction

I should have done this before posting, my apologies. I'm 66 and live with my husband in Central Scotland. I have been ill with M.E. / Fibromyalgia since 95 (they used to group both illnesses together). I am pretty much house and bed bound and my husband has become my carer. Our two kids have grown, married and flown the nest. I have a gorgeous grandaughter of 6 who lightens my life. I've managed to cope with the neglect and disregard from the medical profession which most of us, no doubt, have experienced but recently I've found myself very teary and very angry about it. I have been lucky in that I have a very kind GP who will allow me to try any meds I have come across that may help, so long as its within his remit legally of course. I came across this site last night at my usual wide awake time 11.30 on til around 2.30 and beyond. So thats me and I'm happy to be here. I appreciate the replies I've had to my post already, people seem very kind. I have to admit that I was on a very large American site for many years but left due to the back biting that went on and decided to stay away from sites. However, I'm really impressed with what you have here so thanks for welcoming me.

24 Replies

oldestnewest
  • Ho Rosiebud welcome back xxx

  • Changes in emotions may come under emotional lability which has received more attention in MS than ME but is common in neurological conditions which affect brain function.

    Some advice for dealing with MS symptoms that may transfer into your own situation

    in this link mssociety.org.uk/what-is-ms... hoping something helps.

  • Thanks for the link on emotionalism Ian, this is exactly what happens to me. Good to know its 'normal' as I thought I was having a breakdown.

  • Glad I could be of some help :-)

  • Hello rosie-bud

    I just wanted to wish you a very warm welcome to our wonderful forum 😊 I was initially diagnosed in 1981 with Fibro and Chronic Fatigue.

    I also now also suffer with depression and anxiety amongst a host of other symptoms that have come along for the ride!

    You may like to have a look at our mother site for further information fmauk.org

    I don't know if you have seen any of us discussing locking our posts. I am more than happy to lock your post for you, if you'd like, but will leave you instructions at the bottom of my reply on how to lock your post. It's just a good habit to get into.

    I too felt extremely let down by my previous GP but am just about getting there with a new one.

    I am not a doctor and just expressing an opinion, but was wondering whether you may be suffering with mild depression with the tears and anger?

    I very much hope that you enjoy being part of the forum and look forward to seeing you around.

    Wishing you calmness and peace

    Lu xx

  • Hi again

    Here come the instructions as promised:

    Please see below some (hopefully!) clear instructions on how to lock your posts:

    If you have any other queries please let me know and I will be happy to try to help 😊

    To lock a post when you've finished writing it scroll down to the bottom of the blue box and you'll see on the left hand side two options:

    o Everyone

    o Community

    If you click on the Community option, this will then lock your post.

    If you want to lock a post that you have already put up onto the forum, find your post and again scroll to the bottom of the square box. You'll see a small downward arrow (v). Click on that and you will get an Edit option. Click on edit and then select the Community button as above.

  • Welcome and in live in Texas USA this is a wonderful site!!!! I really hope you find the site as wonderful as I do!!!

  • Hi rosiebud

    Once again, welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you are feeling as well as you possibly can be today?

    I also suffer with Fibro, and I also have arthritis, asthma, COPD and migraines among other illnesses. Thank you for the wonderful words that you have written about the forum and I know the members will genuinely appreciate them. I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Rosiebud,

    Nice to meet you and wanted to say welcome.

    I'm a 53 yrs old lady from the South Coast.

    I've given up working, or should I say NHS gave up on me. March last year, I was called into the call centre at our local NHS hospital and was asked politely to leave as the managers were worried for my safety walking down the slope and steps into work, especially as it had been icy the last few days.

    Gutted, sad, beaten and skint now, I left the building being treated like a criminal as I wasn't allowed to even say goodbye to my colleagues.

    Still life goes on.

    I claim DLA and have not yet been invited to join PIP.

    I have one daughter age 29yrs and unfortunately she is a sick girl.

    She suffers from bipolar disorder, depression, OCD and Lupus of the skin (discoid) we are just awaiting results on SLE Lupus, hoping and praying it's the extra medication she has been on while in middle of an episode in hospital. She is getting married in September.

    Well once again welcome and nice to meet another Fibro person.

    Currently I too have a wonderful GP and I'm taking a huge amount of pain relieving drugs from paracetamol to morphing,

    Take care new friend

    Lottieonline

  • Lottie i left you a reply but me the silly moo has put it in the wrong place and you will find it further down the thread. :P

  • Hi Lottieonline! Am appalled at the way you were dismissed from work in an NHS environment..If they were actually concerned with your safety they could have transferred you to another workplace and supported you to stay in work as I have been....I would also have sought advice for constructive dismissal!

    However also know when you are in pain feel most vulnerable and not able to take action....

    Hope you and your daughter have better days!

    Bea

  • Thanks Bea,

    I was in pain and also I couldn't fight to stay as they never gave me a contract ever in the whole 5 years working there!

    I blamed my disability but the managers said ''don't be silly''

    I shall not ever return there or anywhere now, my pain has quadrupled in the last year.

    So goodness what it will be like next year.

    I've gone from a tri-walker to Fischer sticks, to manual wheelchair to now a mobility electric scooter and now I've asked my Occupational Health from adult Social Services for a electric motor chair as I can't get on bus with scooter and without it, I just can't walk anymore the pain is incredibly painful enough so, I've not been out for more than a week.

    Thanks and take care you too xx

  • Hi Lottie, it seems a long time since I've seen you on-line though maybe I've just missed any posts/replies you've made. I hope you're taking care and feeling as well as can be :-)

  • Hi Rosiebud,

    A huge warm welcome from all of us here at FMA UK :)

    Thank you for your kind words, they are certainly very much appreaciated.

    It is wonderful to have so many lovely friends that really care and understand one another! May their positive energy continue to flow :)

    Hope you enjoy the forum and join in with our chats, when you can!

    Take care,

    Soft and gentle hugs,

    Elizabeth :) xx

  • Hi Lottie, i am more than a bit puzzled about your comment on PIP and being invited to join.

    if it is the PIP benefits that you are talking about you have to apply by phone.

    If you go back to the top of the page and check on the right hand side of the page look for Topics there is a pin right at the top about benefits that could be useful.

    If i have read your reply wrongly and got hold of the wrong end of the stick. I apologise in advance.

    Hugs sue. :)

  • Hi Rosiebud, welcome to the site.

    We are quite a mixed bunch here but luckily everyone seems to respect each others privacy and point of view, even if it differs from our own. Our conditions and circumstances are so varied and complicated that it means things can be quite different for each of us. Doesn't mean any of us are suffering any less. Just differently.

    Luckily we all seem to realise that and I haven't come across any backbiting here, quite the opposite. A friendly, supportive and inclusive bunch with a good sense of humour which is sorely needed when you travel the road of chronic illness.

    Welcome to the madhouse (speaking purely for myself here :D )

    Margaret.xx :)

  • Hello Rosiebud and welcome :-) It's a relief to find people who understand isn't it. It took me a long time to accidently come across this site, I'm so pleased I did :-)

  • Hi Rosie-Bud,

    Welcome to the forum :)

    I came across this site by accident and I am so glad I did. The people here are a lovely lot, knowledgeable and humorous. I hope you get as much out of it as I do :)

  • Hi Rosiebud. I also stay in Central Scotland. I had to wait some years before I was diagnosed. Been through all the hospital departments etc. Have a very good friend who managed to have me seen by the rheumatology professor where I was told I had fibromyalgia. I have a doctor who is very encouraging and I attend a pain clinic which helps for a while. No wonder you feel depressed. I am in an up spell at the moment so hopefully you will too. The mind fog is still there most of the time. I am 71 and a widow.I have been unwell for about 8 years. It's very hard but try to think positively. Just let the anger come. You are entitled!!

    All the best to you. x

  • Welcome I have made friend and got great support since I joined I learn something new every day

  • Hi Rosiebud, welcome to the forum, I am a member of some others, but this one is one of the friendliest. Sorry to hear about your health issues, we are all in the same boat on here. Some of us have other things too, so we're dealing with symptoms that we can't decide which illness is causing! A nightmare really. Sleeping problems seem to come directly from the Fibro. Glad to hear your GP is helpful though, so many aren't.

    Hope you'll feel "at home" on here and we'll be seeing your comments on other posts.

    Best wishes MariLiz x

  • If you are wide awake in the late evening and stay awake well into the night, you might want to investigate adrenal dysfunction and/or adrenal fatigue. It sounds as if your adrenal function is out of synch and it would be worth speaking to your GP about checking your cortisol levels.

  • Thankyou, I have phone appointment next week and will mention that.

  • Hi Rosiebud,

    I'm from Scotland too, let's say doon the water, will give you a bit of a clue. Sorry to hear your not out and about but that's good you have your wee granddaughter to look forward to seeing. I have to say, I deleted the sites for Fibro on facebook because it was mostly one upmanship for who had it the worst and as you say, could get backbiting. Not my scene at all, I like the feel of this site.

    Take care

    Annita x

You may also like...