new to the site, but could do with some help

Hi there i have not been on this site for very long, and this is the first time i have posted something.

I was diagnosed with fibromyalgia about 6 months ago after having pain in my lower back for about 15 years, as well as a number of other medical problems too. I actually had to change GP as i felt that anytime i went to see him about things, he would be quite condescending and actually even said that he thought i only went to see him because i wanted more painkillers, where i just wanted some one to investigate into my problems more.there was nothing that the doctors could do fir my back, MRI should this, but i was having lots of pain around my body, was always so exhausted and was having memory issues. I did google my symptoms and firbromyagia was listed as a possibility.

i changed GP because the one i was seeing just seemed to dismiss everything i was saying to him, but as a mum of three and a wife, i needed ti have some answers without being judged, hence why i thought changing GP's may help, and it did. They were very supportive and i was sent to see a neurologist, and it was him that diagnosed it, and was not happy that my old gp hadn't investigated it further.

I now see an number of different doctors and departments but this just seems to get me referred to more departments and they find more things that have wrong with me too.

I am just trying to reach out to everyone to see what advice they can give me on how to live with this, what things i can do to help myself and how i can teach myself about pacing myself to try and stop the flare ups from happening all the time. For example i decided to clean the bath room and hover the stairs, and because i knelt down on my knees for only 10-15 mins, i have spent the last few days in agony, with my left thigh swollen to twice its size as well as swollen knees and i cant weight bear on my leg at all, so having to use crutches to get around. The worse thing is that this isn't the firs time this has happened, but the doctors don't know why this keeps happening after a short length of time.

If anyone could give me so advice on how to move forward and hopefully find something that could help me both physically, but also mentally as well, as i feel this is the main thing i'm struggling with.

It hard to explain to people that i really am ill, but because they can't see anything physically, then they don't tend to believe you. i even have members of my own family not believing me, its only been in the last month or so that my sister finally admitted that she believed me. This has caused some huge arguments between myself and my sibling, which really hurt, as I feel that they should have understood what i am going through,and even now there is still a big wedge between us, and i feel that my in-laws are far more understanding and supportive of me, and help u so much, and i cant blame not living close as they only live 2 minutes away.

sorry for such a long post but i am really needing some help and support through this difficult time in my life, my friend recommended this forum site as she found it extremely helpful and informative.

any advice would be so helpful and greatly appreciated.

Many thanks

Nikki

5 Replies

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  • Hello Nikki

    Welcome to the forum :) I promise you that you will not look back after joining us.

    If you look at our mother site you will find a lot of information about Fibromyalgia fmauk.org

    My best advice to you would be to find out as much as you can about how your Fibromyalgia affects you.

    Fibro is tailor made to each person and what affects me really badly may not affect you at all and vice versa.

    Please don't expect to be able to pick everything up immediately. I have had Fibro, ME plus other conditions for 36 years and I am still learning.

    I hope you don't mind me saying this, but I feel you are wanting too much too quickly. I completely understand why, but unfortunately these things do take time.

    It can take a long time to come to terms with a diagnosis of Fibro and acceptance does not come easily to most of us.

    Do you know if either of your GP's have investigated you for things like Lyme Disease, Lupus and MS? If not, it would be a good idea to have these conditions ruled out.

    Pacing yourself is incredibly hard. Well, I find it hard and I know that many of our members do too.

    Google the Spoon Theory. You may find that useful. Otherwise it is a case of doing something for say 10 minutes then resting, then doing something else and resting again.

    I wish I had a magic answer for you as I know how it feels having lived with this much pain and fatigue for so many years.

    You will find that you get chatting to many people on the forum. I have been a member for 5 years and have made some wonderful friends during my time here.

    We all have Fibro and understand how you feel.

    Again on our website there is a sheet about Fibro that you can print off to show your friends and family.

    We strongly recommend that you lock your posts. Unlocked posts are open to anyone who has access to the internet. Not just this forum.

    I will pop back and give you a link to an easy to follow guide on how to lock your posts. **

    If you still need any help navigating the forum, please don't hesitate to give me a shout and I will be more than happy to help you.

    If there are any questions you'd like to ask me, please fire away.

    Wishing you much peace

    Lu x

    Administrator

    ** Here is the link that I promised you.

    Click on the blue line and the post that I have written giving an easy to follow guide on how to lock your posts will pop up:

    healthunlocked.com/fibromya...

  • Hello and welcome to our friendly fibro forum where you can find help, support, advice and understanding, along with a chuckle or two to lighten the day.

    I see that our Lu has given you some great advice, particularly about the Spoon Theory and it is really worth following that up.

    By coming on this site you have made a postive step to finding out all about fibro and how people cope and about the days when it seems too much.I am still learning after being here more than threee years!

    I do hope we see you joining in around the forum.

    Kay

  • Hi nikki56

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that you can find the answers that you are looking for.

    Everybody appears to suffer with their Fibro differently, and members tend to have it in different degrees or levels. I personally undertake a very gentle 20 minute daily exercise routine that I get from my physio to try and keep mobile. However, and in the same breath, I also think it is so important to pace yourself and not overdo things, as this will almost certainly make your Fibro worse.

    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

  • Hi Nikki, im sorry i cant help you with your fibro issues as im not a sufferer but i do understand people not believing or helping you thst can be very hurtful and frustrating and makes you feel even worse regarding your condition, im certain you will get support and some great advice regarding your condition from the wonderful , kind and caring members here.

    Blessings

  • Hey hun

    Spoon theory will help you explain to your family I think it's a great way to show how you are on a daily basis x

    It's hard my kids think I'm lazy my sis thinks I'm a liar and my friends think I lie about being ill to flake on activities it's not easy. Head up chest out and breathe xx

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