feeling pretty low at the moment I have been diagnoised for a year but had very little support

my life feels like its in turmoil

Ive tried the magnisum baths the vitamin replacement B D and try to eat healthy, thing is

this fibro has changed my whole personality i get irritable with the pain cant have the kids hugging me or my partner now my fiancee has called off the future.

I tried so hard to get back on my feet take my meds but i pushed my self to far and kept having flare ups,

my mum and my maternal aunt have had fibro for many years and they think it could be a genetic link Ive only seen a Rheumatologist once after years of pain i was given a leaflet and told its incurable sorry im usually a very private person but today i realised that im loosing people due to this I live an isolated life revolving round the kids but thats getting harder as my energy levels drop

what can I do next to help myself as Gps really do not know enough

16 Replies

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  • Gentle hugs.

    Yes, life does seem to go into turmoil whern we get as diagnosis. It's like we have to go through some kind of bereavement. Fibro can't be cured yet but it can be managed. As your GP to refer you to the hospital Pain Clinic. I did and a was put on a Fibromyalgia management course which really helped. When we get the right mix of help and medication, we can improve so don't give up hope.

    Educate yourself on this illness as much as you can and be your own best friend.

    I think there is a genetic link here. Both my sister and I have Fibro.

    Gentle hugs

    Jillyxx

  • Th ank you Jilly It is indeed like grieving, I have lost myself then on some of those not too bad days I see a glimpes of myself and I think I must try and get that person back

    I will go to my Gp again and try and get a referal to pain clinic they have never mentioned it to me even after I have been obviously in pain and I am not managing very well.

    One of the Gps told me I needed sleep and fibro was linked to insomnia and no medication would help and he took me off pregaline a medication for fibro

    that another gp had perscribed in the group practice

    Yes there is a genetic link my mum and aunt are both disabled by the condition

    Gentle hugs to you Thank you so much xxxx

  • Sorry you are having such trouble I'm exactly the same get irritated so easily like never before. Just try to keep positive as much as you can and don't let it get you down its not your fault. I think a support group could be a good idea or at least worth a try. I have got so frustrated with the doctors treatment. Some seem to want to do as little as possible for you. I find gradual exercise helps. Even if its just a step outside, to clear your mind & relieve some stress. Multi vitamins are good for an energy boost. Such as berroca, floradix has hightened my energy levels its £10 for the tablets from holland &barret and lasts a good few months. Hope things get better for you x

  • Thank you hugs to you msBrightside

  • Hi so sorry that you are feeling so low. As Jilly says it is like a bereavement and it seems as though we have to work through all the different stages and some stages take longer to work through than others. I also think that most of us are our own worse enemies as often we try and forget we are ill and try to prove to others that we are the same person as we were before and try to do things that we now can;t do and end up doing ourselves more harm than good. Sometimes I think I will explode if I see the word "pacing" one more time as I have never been a pacer. That is one thing my husband and I really miss is a really good hug and as he is a very big man if he hugs you you stay hugged. He sometimes forgets and yes I nearly scream the place down but we have also gradually learnt to see the funnier side to it. It must be especially difficult for you having to consider your children as well. Yes you will lose people out of your life as some people seem afraid of illness as though it is something catching but the "keepers" who stay with you on this new journey are worth a hundred times more than the ones that fade away. There is alot of information on the fibro site as there might be something there that would be good for you which you haven;t tried. Can we ask what medication you are on? I understand if you want to keep anything private but there might be something that one of us has tried that could help some of your symptoms. We can all emphathise with what you are going through I think we have all been there at some time or another so if you want a rant go ahead as we will all understand it is often good to have somewhere where you can let off steam. Gentle virtual hugs to youx

  • Thank you so much yes I am on citalapram for the depression that it seems to acompany fibro and Zydol gp also gave me anatriciline but it made my anxiety and moods so much worse

    Thank you again Rosewine xx

  • Hello Welcome to the site. Being able to sleep does help a lot unfortunatley even if we feel that we have slept all night you probably did not reach stage 4 sleep this is when our bodies are supposed to restore and heal themselves and for some reason fibro stops us from doing that.

    It still helps though to get some sleep, I and several others take antriptiline . This is normally used for depression but as a side effect helps with pain and sleep.

    As jilly mentioned pain clinic seems to be a big help. Though i have not needed to go.

    Have you been onto the mother site yet? to get onto it click on the yellow butterfly at the top right hand corner of the page. There you will find lot of info on fibro

    lots of hugs and hope to see you around sue xx

  • Hi luthersmummy

    I am so sorry to read that you are suffering in this way and without any real and constructive help! I think that you have been offered some wonderful advice already from off the members, so all I would say is make a list of what you think would help and take it with you to discuss the issues with your GP?

    I want to wish you all the best of luck

    Ken x

  • Hi luthersmummy

    I totally understand what you are going through, and it is a form of grieving. As well as the medical support, you do need emotional support to get through. When I was at my lowest, I was in terrible pain, not sleeping and constantly crying and would start almost every sentence with "I used to be able". I was at home on ESA after having a high flying well paid job, was back and forth from the hospital as have a variety of illnesses now, and everyday I felt was just a nightmare and out of my control. One day my husband,who is the most supportive and laid back person you can find, said to me. You have an illness which is not going to go away and is now a major part of your life, but you are still in control. Stop trying to make this illness fit the lifestyle you had and long for because it wont. Adapt yourself, your thoughts and your environment to accommodate your disabilities.

    That was the best advice anyone has given me, and that is exactly what I did. Instead of looking at the things I could no longer do, I focused on what I could. Life was still good, even if it was pain riddled. I started a Business Support company working from home, realising the skills I had when working for a company were still there, I was the same person, and I was in control. I refuse to let my disabilities, which are many, define me.

    My business is going really well, and I now employ other people, also working from home. I tell each new and prospective client that I am disabled, and explain the issues I have and the limitations, and they have all been positive.

    So, please take a little comfort from my situation. I cannot promise that you will suddenly be pain free and everything will be honky dory, but I can promise you that once you accept that you are in control, you will be.

    Take care.

    Sharon.

  • Hi Luthersmummy,

    I was diagnosed just before Christmas which in itself caused a flare. Everyone before me has said it all so no point in me repeating it. I will just welcome you and tell you that there is support on here and that they are a lovely bunch of people. I found, for me, it was not being as energetic as I usually would be and having to come to terms with the fact that I am not superwoman after all :) now that was a shock :) I also hate the fact that my family now tailor days out to suit me, so then I feel I am being a nuisance and nobody can have fun because of me. On good days I realise that they are just being thoughtful. I hope you can find a pace to live so you can enjoy your kids. Sending you a big hug :)

  • Thank you all for your support and advise

    I am going to see My Gp today and taking control as I have been in a vicious circle Im hoping i can express myself for him to take notice.

    I will check the mother site and I will see if there is a support group near

    Feeling a little more positive today and its brought it home that I am not alone

    Thank you all I really appreciate the time you have all taken to reply

    Love and gentle Hugs xxxx

  • Hi Hope youare all feeling as well as possible

    Im just checking in and I have been to Gp who agreed I need to see my Rheumatologist again

    And has also agreed that I should be referred to the pain clinic, Thank you to all that took the time to reply and this wounderful site I am so glad I JOINED

  • Hi Luthersmummy,

    Firstly I wanted to say hi and give you a gentle hug.

    I have recently been diagnosed myself and I have been going through the same feelings of loss for my old self. I don't have kids, but my partner is a foster-carer so I know some of those feelings too.

    I eventually got to the point where i was so depressed and felt so much of a nuisance that i left my partner last month and am now living in a hostel for homeless people. I realise now i was wrong and it was the fibro that made me feel like that. Having space to think has given me back my independence and i hope i will soon have my own place (although i don't quite know how i will cope alone).

    I wish you all the luck in the world and i need friends, so am always here if you need a chat or rant :-)

    Jayne xx

  • Hi Jayne and sending gentle hugs

  • Thank you for your reply it brought a tear to my eye as i realise that I am not alone

    You are a very strong person from what you have written

    I wish you all the luck and sending lots of love

    I have time myself to reflect and its like a vacume sometimes and I have been so wrapped up trying to try an beat this condition that we really dont see what its doing to those close to us

    Im in the process of accepting that fibro is now part of my life thatin its self with the support of people like you is a massive step forward as i really did not want to believe it

    yes i tried to carry on doing the impossible and getting myself into the vicious circle of feeling ok one or two days and trying to catch up with things that as i reflect were really not that important and when it was time to spend quality time with those important to me was to fatigued,in pain, irritable and i must admit a monster lol to be around

    and yes it was in my mind their faults because they were there at the time.

    Im feeling more positive now I have reflected and yes I need my independance

    I now have to adjust my whole daily life to work with the fibro not against it

    Jayne thank you for your reply Keep as well as you possibly can sending gentle hugs xxxxxxx

  • Glad you are feeling a bit better now. You are certainly not alone and I know how that helps me. All I can say is try not to be too hard on yourself (easier said than done, I know!) and try to take each day as it comes. Obviously I am trying also to take my own advice!

    good luck hunny & gentle hugs to you :-) xx

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