Hi everyone, after reading sibbs post it made me think of my symptoms. I have posted before , I had a tumour removed from my spine in January this year , after being treated for almost 7 months with sciatica and also rats of medication. Anyway since my op my health has been low, I am constantly in pain, backache, cramps, spasms in my arms , some days I can't even touch my shoulders and arms , headaches . I am a nurse and this time last year was in charge of 90 residents and ten staff on a nightshift , that seems like a whole other life now, anxious isn't the word, I am usually a very outgoing person but I am constantly cancelling outings with friends , i feel so down just now , have no energy, and just don't know what's wrong. Is this all in my mind , it's driving me crazy, thank you for reading if you got this far, I may not post a lot but reading your posts help me from day to day but just felt I had to post today as this can't go on. X

23 Replies

  • Its hard to keep smiling but I really hope you find something to smile about soon x

  • Mogi52,

  • Hi,

    I'm sorry you too are feeling so low. I'm new to all this.. My head is a mess and have just had a call from my boss to see when I'll be back at work. I called in on Friday after my GP appointment, in a right mess asking for a week off to get my head around my circumstances. I'm baffled. So many responsibilities, so many changes I need to make but so few options come to mind.

    Do I take it on the chin and continue struggling the way I am or do I take big risks to be able to take care of myself. I can't afford to take care of myself.. But I cant afford not to either.

    Have you found any answers to similar question?

    What are wd to do? x

  • Can you get help from Access to work to support you to stay in work?

  • Hi there , I havnt really looked into that yet, but thank you , worth thinking about x

  • I've never even heard of that..

    I'm not exactly off sick from work, I just asked for a bit of time off. Luckily a while back I managed to put away about a weeks wages, so that should cover the short notice leave.

    If I'm honest I hate my job at the moment so really I'm looking for a career change.

    I think I'll just knuckle down, do my basic hours in my current job and try and pull myself together to get on the case and find another.

    But thank you for the suggestion, I'll google that ASAP x

  • Hi sibbbs, I'm sorry you are getting hassle from your boss as well , this only adds to all the anxiety, has your doctor not given you a medical certificate? , it's so hard when your mind is in a whirl , this is such a horrible feeling, I have been off from work since May last year unfortunately I don't get paid, despite being employed as a nurse for the past 34 years all I get is £144 ESA every two weeks and this was after fighting for it , I don't qualify for income related as my husband works . We just want to be well and get on with our lives , I'm sorry I don't have any words of wisdom for you but this board is great and helps when I'm down , keep in touch, hugs to you xx

  • That's horrible when you've worked so long and hard to care for others.

    I hope your financial position improves soon.

    Same for me nearlyHubby works, earns an ok wage but we need my income.. We're not entitled to any tax credits apparently, I haven't applied else where in terms of financial assistence.. Without a proper diagnosis I'm a bit stuck.. I'm reluctant to accept I've fibromyalgia, maybe it's my hypermobility worsening.. I just don't know anymore, all I know is that I hurt and it's exhausting and it gets me down.

    My osteopath did acupuncture on me today (first experiene) so hopefully in the next few days I'll get some relief.

    I wish you all the very best x x

  • Hi sibbs, it's not easy, we are the same , my income is needed , let me know how you feel with the acupuncture , I can have it at my GP surgery for free so would be interesting to know if it helps you. Take care xx

  • Have you joined any of the hypermobility charities? Theres also an EDS one as well. EDS3 and HMS are considered the same disability.

    Also theirs stanmore rehabilitation centre for chronic pain folk and they specialise in treating HMS/EDS3.

    gentle hugs.

  • Dear Mogi, really touched to read your post, genuinely and sincerely feeling for you. You sound such a capable person, and its sometimes a big adjustment adapting to the healing needs of our bodies when used to being so active, yet allowing gentleness and kindness, and pacing yourself to the best of your human ability will help you gradually build back your inner strength and fantastic resilience.

    You are a wonderful and capable person, I can tell, and perhaps...probably used to caring for others more than for asking for genuinely needed support for yourself?

    This is human-mortal yet heartfelt reply doesn't come with big solutions, yet to wish you warmest wishes, to rest well, to trust and allow your whole body some rest and recuperation,...because you've been through a lot with your big op and the previous 7 months with sciatica ...and everything within is healing and adjusting.

    Everyone is allowed to feel down some days, when going through such a lot... And if you are feeling concern about any medical symptoms or feel you need some deeper emotional support for a while, will you let your GP know too, as well as sharing with us here in our community. Hope you are feeling a bit more eased as soon as can be, here is a gentle hug too (for when and if you wish)

    Kindest wishes, RockRose xx

  • Thankyou RockRose, I think I will go to my GP, thankfully he is very good , I just feel I should be feeling better than I am, your kind words are a comfort , take care x

  • That feels so wise dear Mogi and every support and best wishes for seeing the GP. Glad that you have a good one. Wishing you some real relief as soon as humanly can be. Will you share with us how you get along (when you feel ready)? Take care too meanwhile x

  • Hi Mogi,

    I completely sympathise with how you're feeling and no, it's not all in the mind. I've finally come through a few months of feeling really down as my pain and fatigue went through the roof. I definitely notice my ability to think positively is non-existent when my pain and fatigue are bad and I also spend time thinking about the job I had and the things I used to do and what I feel I've lost. I think it's completely natural to feel this way when you're in so much pain, so please don't give yourself a hard time or worry that you feel this way.

    I've spent a few weeks recovering after going out one day for a walk (3 miles, so my own fault) and it's been really tough and I've been really down. At the same time, I knew I would have to rest afterwards as much as possible and knew that at some point (though it feels like forever) my pain and fatigue would get back to a more bearable level. That finally seems to have started this week and my mood has changed for the better. I'm still in pain and tired, but know it could be a lot worse.

    I'm not sure this is very helpful other than to say stick in there, rest as much as you can and don't be hard on yourself when you feel sad or upset. Anyone in a similar situation would feel the same. Your surgery will have been quite invasive I should think and our bodies need more time than we think to recover. I had an op in March and I probably forget that my body is still repairing itself and will be for a while yet. January isn't that long ago, so it might take more time to get over it.

    Keep strong and I'm sure once you have fully recovered from the op (which may take longer with fibro), you'll start feeling like seeing friends again. I'm sure they understand.

    Take care and all the best,

    Pip xx

  • Hi Pip, thankyou . Sorry you have been through such a hard time as well, it's so hard when you have been active and taken care of everyone else and now struggle to keep the home going. Can I just say that you have made me realise along with RockRose that I should see my GP, especially with you saying I may take longer to recover with fibro, i have just realised that a lot of my symptoms are pointing towards that , though I was a fit and healthy 52 yr old up until May of last year. Thank you Pip, take care xx

  • Hi. I did a lot of reading pre my op (gallbladder removal) and the key points seemed to be the op itself could cause a flare up (more the anaesthetic and positioning of the body on the operating table than the actual surgery in some cases) and that people with fibro took longer to recover. I think we underestimate how long that recovery might be - or maybe it's wishful thinking ;) However, at least it gives some hope that we will start to feel better (or what I call 'normal for me now') at some point.

    Yes, I'm 43 and had just completed a PhD and done a year's postdoctoral research before the fatigue finished me. I've got to the point where I'm accepting of the condition and try (mmmmm, still working on this bit) to pace myself.

    Hopefully your GP can give you some reassurance that you're on the right track, but that it might take a while.

    Pip xx

  • I sympathise with you having being a person who didn't know how to sit down d always being on the go doing 100 things at once to taking sleeps in the afternoon to now just pacing myself . The hardest part of it all is when one day you have little pain and feel energetic and you go for it doing lots of things, then boom, your down with aches pains and tiredness for days if not longer up to weeks .......

    You will get there and it isn't easy . I suffer from depression badly and that's due to some days feelings I'm on the outside looking in and have no control over what the person is doing or I get very stressed at lack of belief from others.

    Take your time and pace yourself is a must. And don't over do things, and try not to think of what you used to do and more of what you can do......big hugs and kisses xx

  • Hi audh , thank you for your reply, I know it's so hard when sometimes the mind is willing but the body won't go along with it. I have went from being so active , to practically where I am exhausted just making a bed in then morning. I think it's hard for some people to understand because they can't see anything wrong it's all on the inside. I try not to complain and show the pain and feelings I have , I have two young teenagers and feel they as well as my husband have been through enough this last year so tend to smile and get on with it. You take care , hugs to you xx

  • I am so genuinely sorry to read that, and I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Thank you Ken x

  • Thinking of you and sending best wishes and lots of gentle hugs xxx

  • Thank you , all these wee messages mean such a lot , hugs to you to BettyAlice x

  • Heres a link to the access to work scheme that i mentioned before

    Admin if we havent already could this be saved as file for anyone to use?

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