Fibro, Lupus, Chronic Heart Failure and more

Hi, I'm new to this part of the site butave been in touch with the Lupus UK for a few months now. I have Fibro, Lupus, chronic heart failure and a host of pther related illnesses.

I'm feeling really low at the moment trying to deal with the fatigue and continual pain. I get a searing pain just behind my right eye and a shicking headache to deal with too. I feel old before my time and its hard to deal with. I could really do with some support as I feel really lonely an isolated and no one seems to really understand, except my GP but I need more than that. Help!!

14 Replies

  • Hi there,bless you i'm not surprised you feel low considering how poorly you are,i am sending you a big squishy hug! Sounds like you need more adequate pain relief have you seen your G/P or consultant lately?,Please don't despair things will in time improve,have you tried talking to family and friends letting them know you could do with some extra support and understanding, the fatigue is dreadful so don't worry that you need to sleep and or rest more,duvet days are sometimes all we can muster,eventually it will pass,be kind to yourself and concentrate on what things make you happy,listening to your favourite music watching your favourite film etc, i really hope you feel better soon,just knowing someone cares and is listening can mean so much, Take care and keep in touch Love and Hugs Della xxx

  • Thank you for replying. I think I have exhausted family and friends at the moment hence coming onto this site. Its easier than having to explain exactly what the problem is and why its happening. In terms of pain relief I am on tramdol and gabepentin, i think I have become immune to them though. I am seeing my Lupus consultant on Monday as well as my GP and I'll let them know about my eyes and headaches and I'm sure they will send me to have more bloods done. Thanks so much for my hug! Mina xx

  • Hi there it is times like this that its great to come on the site and realise we are not alone I too send you hugs . Just a note on your searing eye pain and headache Please get this checked with your doc as I had similar pain plus a few other issues and it turned out to be temporal arteritis It probably isn't in your case but ask for a blood test as the first doc I saw did not pick up on it and it wasn't till I was up all night crying that I saw another doc the next day who put me on steroids I feel it's better to be safe than sorry I've had Lupus so long now I tend to soldier on until its too late but fortunately we caught this in time Take care x

  • Thanks for replying, it means a lot. I'm seeing my Lupus consultant and GP on Monday and so will let them know about the eyes and headaches. They are both fantastic and will take whatever steps are necessary to help me. Its just that sometimes it feels as though it is one thing after another, thats what makes me cry. Thanks for my hug xx

  • Hi there x some good advice from the girls there. I too send you some hugs xx. Having so much on your plate is bound to be overwhelming :-/ do you have much in the way of friends and family to chat to regularly so that conversations aren't too emotional or overwhelming for them? How about local social group s for a change of scene?

    Rest up and be kind to yourself x

  • Thanks for replying. I think I have exhausted the family and friends for the time being. This might sound weird but sometimes I am in so much pain its a struggle to talk, I get my words muddled or I cant put what I want to say into words and its fustrating which usually ends in tears. I have been to two lupus meetings which were great and it was a relief to talk to people who really "get it". The next meeting is scheduled for the end of May which I will definately be going to. Thanks for your kind words. Mina xx

  • Hi Browneyedgal,

    Sorry you're feeling so low, but you will always get support and friendship here, no matter how you feel. The girls have given some good tips above, and I'm sure you will feel better before too long. Make sure that you tell your doctors exactly how you're feeling and don't be fobbed off!

    Moffy x

  • Moffy, you're so right, the girls have been so kind with their words and advice. I do feel beter for havinbg posted, which I normally never do but I intend to take all of your words on board. I am seeing my Lupus Consultant and GP on monday who are both exellent! Thanks again Mina xx

  • Is there a fibro group in your area? It is great to meet up with someone with the same problems, you don't feel you are the only one, and most of us have fibro and at least one of its nasty friends, our group does a lot of things like have speakers and arrange spa visits and now we have a grant for a craft class and a library of books that we can borrow, so you get something practical out of it.

  • Hey, thanks for your email. I havent checked out the Fibro group but I have been going to Lupus meetings and there is another one at the end of May that I intend to go to. I also managed to find a local beauty college that are offering a 90 minute full bod massage for £15, so thats where I will be on Thursday and if it goes well I hope to be there at least twice a month. Thanks four kind words. Mina xx

  • Hi Browneyedgal,

    Welcome to the forum.

    I see you have had lots of help from our members with good advice to try to help with the way you are feeling at the moment. As Moffy says we are always here to listen & help advise the best we can, so you can always pop online and chat anytime.

    Jjudith has mentioned about maybe trying to find a support group in your area. Here is a link to the Support Group Directory on the FibroAction website

    There maybe a group near you that you could attend and then you could meet up with others face to face that understand too.

    Have you any hobbies? I personally found from past experience that when I was lonely and having a flare, I tried to occupy my mind with new hobbies. I often dismissed creative craft type hobbies as I was never good at Art but I found card making can be quite therapeutic. Try something completely different and maybe you may really start to enjoy this new hobby!

    Best Wishes


  • Emma, everyone has been fab. I was feeling so low last night and when i logged on today i was so surprised to see everyones kind words, I really didnt expect anyone to reply but feel blessed that they did. I hope to return the favour one day too.

    I usded to do a lot of comedy writng which I intend to start again, at least then I will keep the old grey matter going!

    Mina xx

  • You have come to the right place, welcome. Sorry you are feeling so low but by the sound of it you have every right to be. The one thing I think we have all learnt from having fibro is that you must put yourself first. If you are feeling fatigued, then take a warm bath and tuck yoursel up in bed, put on your favourite music, tv show, or an audio book and relax. And do this every day till you start to feel a little better. You sound like you are in a lot of pain, perhaps you need to return to your GP and get some better pain medication. Try and do one task a day, for example answer emails, send a birthday card, tidy out a cupboard. You feel so much better if you have achieved something. Each day, try and walk a little and get some fresh air.

    Having fibro puts you in a very lonely place, friends who don't understand, partners/ husbands who think they are hard done by because you are I'll. You have something that a lot of us don't have, an understanding GP. And you have a whole collection of people here who understand exactly what you are going through so keep in touch.

    There is always hope so keep searching for he answers, never give up because tomorrow things will look so muc h better.

    Here's wishing you the bluest sky,

    And hoping something better comes tomorrow.

    Hoping all the verses rhyme,

    And the very best of choruses to

    Follow all the doubt and sadness.

    I know that better things are on the way.

    Here's hoping all the days ahead

    Won't be as bitter as the ones behind you.

    Be an optimist instead,

    And somehow happiness will find you.

    Forget what happened yesterday,

    I know that better things are on the way.

    It's really good to see you rocking out

    And having fun,

    Living like you just begun.

    Accept your life and what it brings.

    I hope tomorrow you'll find better things.

    I know tomorrow you'll find better things.

    Here's wishing you the bluest sky,

    And hoping something better comes tomorrow.

    Hoping all the verses rhyme,

    And the very best of choruses to

    Follow all the doubt and sadness.

    I know that better things are on the way.

    I know you've got a lot of good things happening up ahead.

    The past is gone it's all been said.

    So here's to what the future brings,

    I know tomorrow you'll find better things.

    I know tomorrow you'll find better things.

    Have great day. Love and hugs Lizzie xxxxxx

  • Lizzie, thank you for your kind words and wonderful poem. I feel so supported here and its nice to be around people who get it. I do try and so something everyday but sometimes thats enough to wipe me out completely. My gp and lupus consultant both agreed to send me on a month long pain management course in July so I am hoping that will help me. I will be definately be keeping in touch. Mina xx

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