Thanks for replies

Hi all , thanks very much for your kind replies. Today I was a tad panicked , the gp said I will be in a wheelchair within 5 years and I've had this for 15 years now , so cocky me thought pah what do you know . Well today I had the most hideously painful cramps and spasms from the knees down for nearly an hour and nothing I could do would stop it . so I ended up in tears in the bath hoping the warmth would help . My partner came up to see where I was and found me in tears as did my grown up daughter . No sympathy or help from there , I'm getting really scared what will happen if I DO end up in a wheelchair . Feeling pretty scared right now . I'm trying to do everything I can to reverse what's happening but feel like it may all be for nothing but what choice do I have ! Yoga , osteopath and acupuncture being the favourites at the moment. the gp doesn't want to help as I try the tablets but the side effects are so bad I can't work or do anything and I have no choice at the moment until January when I leave my job and reassess my life . I do agree with the people on this site who say you really must try to keep positive but I'm struggling today :-(

24 Replies

  • Oh how scary :-( bless ya. I bet you was so worried...

    Did the gp say you will be in a wheel chair because of the fibro? Or other health issue's?

    Hope your ok x hugs x

  • Yes , the fibro and my job which is our pub which is killing me , working 10am to 1am without a break isn't great and being on my feet all that time is killing me as I have bulging and prolapsed discs and spondylitis . What do they say ... You just can't get the staff ! Lol yes. It was. Dry worrying ,hanks for your message , hope you're ok x

  • Hi Nicky, I honestly don't know how you are managing to do all those hours, straight through. A healthy person would find it exhausting let alone a dick pne.

    You need to be taking several breaks, for at least an hour a time. It would make such a huge difference to your health.

    I Also think the reason your Docter is saying you'll be in a wheelchair in five years, is to scare you enough to make you realise it will happen if you don't start looking after yourself.

    No amount of money is worth ruining you health, especially when your going to end up too sick to enjoy it.

    If your family are so uncaring, you need to put your foot down. When you feel achy or tired, tell them your taking an hour out and resting and just go.

    You can't possibly go another 6 months like this, your going to end up seriously ill. xx

  • My fiancé tries his very best and I do get most of a Monday off , admittedly I try to do the housework , ironing etc etc as well as resting on those days and I sometimes don't start til late so he really is trying and no , he doesn't understand , he is a permanent rocket who is very very rarely Ill so it's not his fault, it's the long shifts and I have tried to talk about it , I've even said I'm going to start smoking .... So I get cigarette breaks like the staff we have !

    There isn't a choice for the next few months , the brewery want their pound of flesh in massive rent and beer sales and we can't afford any more staff or we won't be able to pay the bills. I absolutely love my job so it is gutting to have to leave in January . I am trying to deal with feelings of guilt as , if I was properly healthy , it wouldn't be happening , but I do know 10am to 1 am isn't practical for me ! we have turned a very troubled pub around and things are starting to go well so it's really upsetting. I am going to put my foot down regards to breaks but sometimes I am it and there is no choice I can see for now.

    Thanks very much for your reply , you make a lot of sense x

  • I couldn't help but hear alarm bells ringing when I read your Post.....what has to happen before you put your health first? No one is going to thank you for making your health worse by not respecting all your health issues,structural and otherwise.

    And why after 15 years of living with Fibro (if that is what you meant by "this"), are you being met with a lack of compassion from your partner and daughter? Surely they understand it by now?

    Please seriously take a moment and ask yourself just why you are abusing your body in this way.....its the only one you've got so look after it! Ill health can be frightening but you can at least say I'm going to look after myself....all the acupunture and osteo in the world cant make up for you pushing your body too hard day after day. What you're doing to yourself seems misguided. Look after you.

  • Thanks for your reply but I don't have a choice , I can't just dump my business and that is why I've given six months notice. Re family , no , I don't think they understand the first thing about it , they're used to e struggling

  • My husband and my 3 grown up children just ignore the fact that I have anything wrong with me. My husband glazes over when I talk about it and when I can do things on good days he can't accept that I am not bringing the pain on. I have now given up working and am certainly less stressed so feel a lot better not to have to get up and ready every morning but I do miss the company especially other women when we all could have a good old moan. I can't moan here because my husband just says he can't cure me and what do I expect him to do. He has very little sympathy.

  • Hi pat,

    So sorry to read your message, at least I don't feel quite so alone any more.

    I feel for you with having no support , even if that just involves being able to vent to someone .

    I think that's one of the things I'm afraid of , I'm not good being on my own and genuinely like being around people.

    I did try to explain to my fiancé on several occasions that sometimes , especially if I'm I tears with the pain , I just need a hug and to be told it'll be ok .... Even if it won't !

    I really hope you find someone to be able to chat to and get that hug from xx

  • Hi nickycb. ....since I posted i see you have had similar messages from casper99, deelittle and Betty67 below.. ...your health must come first or just what are you risking?

    I understand that you feel that you don't have a choice right now but sometimes if we don't make the choice Life has a nasty habit of then making the choice for us. If something suddenly happened tomorrow and you were faced with a situation where carrying on was not an option you would have to deal with it now, no matter how hard and messy. And as many have discovered nobody is indispensable in the world of work.

    In terms of your nearest family I think you may have been your own worst enemy in "struggling" on (i can relate to that personally) . I learnt that if I don't treat myself and my health with respect then neither do others. i can only echo casperr99's advice " you need to put your foot down" and start acting as if you yourself care about your health by looking after yourself properly. Expect surprise and even resistance from your nearest but make sure they know you mean business where your health is concerned and let them like it or lump it! Health is priceless.

  • Have they sent you to a pain and fatigue clinic to see if there's anything they can do to help you cope and maybe your partner could go with you ,they help a lot of people me being one ,they help you refocus and except or encourage you to do what you can and except what you can't , I have a number of health issues and I was expecting to get better but I have learned to each day as it comes and properly won't know but ,I have a friend with a prolapse disk and to sists on her spine which are growing caused by a car accident , she is in tremendoues pain but amazes me as she has made my bed and cooked for me on days when I am bad . She is always upbeat and I find her to be a breath of fresh air ,

    I hope your family can learn to support you ,and you can find away to cope please ask about a pain clinic I found it to be very helpful ,I have MCTD fibro properly SLE as well as a few other bit I am going to try Aqua areboics this next month as have been told that yoga is to strenuase for me ,keep your chin up if you can


  • Hi shadow,

    Thank you for your message . I've been under the pain clinic etc etc for years as I had a car accident 33 years ago and have bugling and prolapsed discs top and bottom , I've had facet joint injections three times with no effect sadly. They said I could have an epidural but it would be very risky as it would be high in my neck with risk of paralysis. I just can't cope with the pain meds they've tried over the years as the side effects are so bad , I wish I could .

    That's very interesting re the yoga , I've done it twice and ended up with migraines and a lot more pain but I just thought it was because things are moving more . Maybe I should try other things like aqua aerobics.

    I'm so pleased for you to have an amazing friend like that .

    I don't like to look too haters at my relationships as if I do , it feels like I have everyone around just taking , taking , taking from me draining me mo re, other than my fiancé.

    This last cramping spamming in my legs has scared me stupid, it's lie, the doctor was right and I'm heading downhill faster than a rolling stone , I don't want to as I'm scared I will be all on my own with it.

  • Oh are probably finding it hard to hear some of the things we are saying to you right now but we are saying them only because we care. As kazzgirl has said just now below you do have a choice...... if not choices I would add. ....perhaps the real issue is they are not choices you even want to contemplate because they are so challenging and frightening. As you say above to shadowswalker you are scared. Totally understandable. So what can you do to lessen the chances of your fears becoming reality? You describe yourself as a 'giver' .....I would say it's time to become a 'taker' need help and support of various kinds....don't be too proud to ask for it and to take it. I know what it's like to be an over giver and it's a mugs game and rarely do people respect you for it. Please start telling yourself that you and your health matter....big time. ...and start to take action from that position. You are more than worth it.

  • I am sorry you feel like your being taken advantage of ,there are unfortunately a lot of people like that in the world I have found, perhaps when you retire you can make sure only the people you want to have around will be in your life , yoga was not good for me the last time I tried it I nearly passed out my head just couldn't cope ,my

    Flexabilty is really good but I am quite weak ,so hoping that might improve , , my daughter is actually paying for my course £26.00 for 7 sessions so we will see how I get on ,it has to be gentle just running it past the GP next week as physio recomended it for me as I am having trouble driving .

    Please keep as positive as you can and try and look for the good in those who are important to you ,the others don't matter and start to learn the magic word No I did a few years ago it's hard at first as I was a classic people pleaser at the expense of me.

    Be kind and gentle to you and put you first and start to think about what you want to do while your still able ,make some memory's for those dark days to make you smile ,perhaps a nice holiday with you other half !


  • Hi and just thought I have decided I am going to be using my scooter most of the time from know on ,I realise if I keep pushing myself the way I am I am not going to do myself any favours ,vanity be d**** ,

    My children all 3 of them got together today (one on iPad) have convinced me to stop and think what I am risking ,I am 53 and they won't me around in 10 years ,so I am going to try and be good my arms and hand are really bad again at moment and by pushing myself to walk with stick or crutch I am not doing myself any favours ,

    I worked for a national supermarket fo the last 4 years of my working life ,I got signed off for a two wee break as I couldn't walk across a room with out having what was thought to be a severe asthmatic attack ,my point being a did nothing but sleep for most of 2014 because when I finally gave in my body shut down ,I met someone through a friend late 2014 ,who promised me the world ,then caused me so much stress other issues kicked in and know I am back to major pacing , a wheel chair sounds arwful but there are worse things as you I am sure from others on here , but you have a chance know to slow down gently so you can still live a nice life, my children remembered what I was like before I be me unwell and know if I could I would but can't ,if your eldest won't help and GP not intrested find yourself a ne GP someone who is you deserve the best care ,you have pie your taxes and you national you are not asking for more than you deserve you , and your daughter get her to go to a clinic with you get the nurses or Dr or others with your condition to talk to her ,you do deserve better ,

    Please take care

    Christina xx

  • Hi Nickycb

    I am so genuinely sorry to read this, and I want to sincerely wish you all the best of luck. I have pasted you a link to the FMA UK website cache called Patient booklet:

    It may help give your family a better understanding of Fibro?

    All my hopes and dreams for you


  • Hi Ken,

    That's really kind of you , thank tou

  • You dont need to be told really.......

    Health must come first, if you don't put this as a priority you're just gonna be fit to drop.

    Pub work and those awful hours.... a real killer on a healthy body, but on an unwell body? Your GP, if he/she is trying to scare you is a bit cruel but if you don't start balancing/pacing yourself the scare comment might become a reality.

    On behalf of all Fybro's I'd like to kick your partner and your daughter squarely in the butt! After all these years? Really!

    Hugs sweetie


  • No one can tell you how you will be in five years but that can give you a possible outcome. You need to take your health seriously and I think that is what your doctor is trying to scare you into. If you can't stop until January then get some temporary help. I employed a school leaver to do some of my running around, OK with a pub you may want an 18+ .

  • Look, I don't understand why people have such a negative idea about wheelchairs. I use an electrically powered wheelchair when I want to go out into town to do the shopping, to visit friends, go sightseeing, etc, etc. I do not use it in the house or my own garden because I don't need to and it is good to remain as active as possible. My powerchair gives me so much freedom and control over my life, the years I spent virtually housebound before I had it were a total nightmare. For several years it gave me the freedom to work, although extreme fatigue now does not make that possible. But it gives me a LIFE, I would be utterly lost without it.

    It is possible to integrate part time wheelchair using into life and to see it is a positive experience if you can let yourself, and educate some of the people around you. Equally, there are other aids that may help, just having a perch stool in a kitchen, or behind the bar(?) might help. When those about you find that by using aids you can do more and potentially can take on tasks that were previously impossible (or very difficult and stressful) and that you can end up in a happier place, then they may come round a bit.

    It sounds as if your family need a bit of education about your condition, no doubt you have tried in the past, are there any support groups or carers groups locally who could help you with ideas of how to help them understand your difficulties? We found as a family that sitting down and working out how we could help each other worked best. My husband had got really fed up with having to carry me when my legs gave out and I couldn't get out of the cinema, so it helped him for me to have individual transport. He had been doing all the shopping on top of his very busy job, and managing all the child transport etc etc, to be freed up from some of that load helped him, it was all about making life easier and pleasanter for everyone.

    Good luck with it all.

  • I don't remember why but I was told pre '94 that I'd end up in a wheelchair. I can remember the comment my husband at the time made. I had never heard of fibro, my Dr hadn't.

    At the time I ran a smallholding, grew all our veg and more, worked part time, was a voluntary horse riding instructor for RDA, had three children and a husband who worked away :-)

    Latterly I ran a flyball team competing nationally and did non-competitive endurance riding. Every weekend was a whirlwind, my daughters horses needed exercising in order for her to compete so I rode for three hours a day over mountain and forestry terrain. I often walked ten miles to exercise the dogs so that they could compete. I was in pain and couldn't sleep for 20 years.

    I have no regrets, great memories and do not live with wishing I had done those things.

    I have used a wheelchair for three years now, it has enabled me to have a life again. I am involved in a crafts group though my hands etc are slowly preventing me from doing as much of that anymore.

    Life evolves, run with it, find positives :-)

  • Hi Nicky,

    It is very upsetting to read your message, I some time feel very scare about what is going to happen with my family if my condition getting you know that worry make you stress?..stress make you even worse when you have FM (flare up?) so..perhaps try to find some place at your home where you can sit down quietly..put the candle..just try to relax..take a deep breath..and think..''nothing is going to happen''...''keep saying to yourself''...''I AM GOING TO BE OK'' have you ever try to get magnesium oil?...spray it on your legs..massage it 2 or 3 times to see if that work..I used to feel heavy and tingling all over my legs ad arms a friend of mind bought me this magnesium oil..I could not do without it now..even If all my body start feeling really aching because I do too much walking...I spray it and massage it..I feel relieve..please try it..

  • Hi there,

    Thanks very much for your reply. That makes total sense. We changed pubs in January and it's since the. I've got so much worse, I've not heard of magnesium oil but I'll try to get some today , thanks very much for the tip . Glad it's helped you x

  • you have a choice, if daughter not in school,education,job, then tell her to work or leave.. boyfriend does his share god love him, but some people don't give or want sympathy, I don't want or like it- trouble is hun, pushing long hours is not your only problem- fibro can hit hard and fast, making you wheelchair bound for life-been there myself. have you tried a tens machine? I use it on my spine whenever legs, arms waist gives more pain than I want to live with- Ask for a relief manager to run the pub until the contract is out.. look at the small print on the lease, with a solicitor or the like- don't screw yourself just to please nobs with fat wallets who wouldn't care whether you live or die- be lucky..

  • Sorry your having such a difficult time. You sound so proactive with all you do to keep yourself as mobile as possible and your gp doesn't seem to have taken your fighting spirit into account. I'm sorry your family didn't give you the sympathy you deserve this time, but they will. Try not to dwell too much on what the gp said they might be wrong and a lot can happen in 5 years. Take gòod care of yourself. Sending you hugs.xx

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