A work in progress

I have been in constant pain for a few years now but I have an almost diagnosis from my GP which I got in October last year. I say almost diagnosis because he does think that I have fibro but I just get the feeling that he thinks I am exaggerating some of my symptoms and my pain. My employers occupational health have put me forward for medical retirement as I also have lymphoedema in both legs which has caused previous absences. When I spoke to my GP about this he said he felt it was premature and he would be suggesting that I would be fit to return to work in the not too distant future. I will be 55 in May and have worked almost constantly since I was 16, I have 3 children and have been a single parent since the youngest was about 6months old, putting myself through university to improve our quality of life and taking whatever work I could get that fitted with child care so I am hardly someoe who could be decribed as workshy, but that is how my GP makes me feel. I suggested a referral to a rheumatologist but was told that they would just tell me the same thing so it wasn't worth it but I could have one if I really wanted. Given that any outstanding referrals to specialists can delay the whole retirement process I declined as I am currently on half salary and due to be on half of a very part time salary from April and am starting to worry about money and how we will survive. My partner is self employed and work has been very slow, he is now trying to get alternative work, but it isn't that easy.

I am trying to get my head around all the things I can no longer do such as serve up a meal, because my hands are very sore and weak. I barely go out of the house and I now walk with a stick as my left ankle is so painful so I can't go for a walk with my grandchildren or help them on their bikes. I was a keen photographer but I can barely hold my camera, when typing or using a touch screen my hands go numb. My feet are always sore and I wake up feeling as though I spent the night running in high heels! I am not getting the hang of pacing myself at all and my depression is getting worse daily.

I sound like a right moaner and, for that, I am sorry. I don't mean to be and there are some parts of my life that are great, but just in smaller doses and for a much shorter time that previously.

There are some days that I could weep for the loss of my previous life and the person I used to be, but there are also days I am happy such as when I have the time to teach my older grandaughter how to sew, or the younger one how to crochet or I spend time doing a jigsaw or I have the opportunity to see them in a school play.

If I had one wish I think it would be to know how long it takes to feel better, how long would it be till I was fit for work or even to go for a pain free walk or do some shopping in comfort. If I could even get the hang of pacing myself I would be happier but that will come in time, I am sure. For now I comfort myself with the fact that there are many others worse off and life has been worse and I coped so I will cope with this as well, it may just take me a little bit longer than I hoped.

If you have got this far, well done. Linda

16 Replies

  • Hi Linda,

    I too am awaiting an "official" diagnosis. My gp has told me she's 90 - 95% sure that fibro will be the diagnosis, but we have to wait for all the tests to come back to rule out all the other options first.

    To be honest, some days I think she's right on the money so to speak and that it's an accurate diagnosis, but other days I feel like she's way off the mark as I have so many things that could be other conditions, yet I'm afraid to make suggestions as to what else it could be, in case she dismisses me like previous doctors have, whereas she's been really great and sympathetic and understanding so far.

    Wouldn't it be great if, one day, we could just wake up and find ourselves pain free?!

    I hope you did accept the referral to the rheumatologist, so that they can be allowed to make up their own mind about your prognosis.

    Hopefully with time you will become more adept at pacing yourself; I too struggle with this. It's a never ending battle between doing enough to feel I've achieved things in a day, and can justify a rest, or getting everything done on a day when I don't feel so bad and then "paying for it" for the next few days. My kids are still young, so I have to be quite active, even on quiet days.

    I hope things work out for you with your job and that the retirement gets approved so you can spend a bit more time enjoying your grandkids without the worry of the financial burden that not working brings.

  • Thanks, the great thing about this forum is it lets you know you are not alone.

  • Hi Linda

    I don't know anyone who after reading your posts think you are exaggerating. If anything it sounds as though your gp hasn't really grasped how debilitating life can be, particularly as you have other health issues too.

    If the company are happy for you to retire and you are comfortable with the idea I would go for it.

    I think you have nothing to lose by going to a rheumatologist. You have something wrong with you that causes aches, pains and tiredness. If it isn't Fibro then perhaps someone should be looking after you to find out what is going on.

    I was medically retired over 15 years ago and the thing I miss most about not working, (apart from the money :)) is the social contact. I thought I had good work mates but over the years they have fallen away, (some of it my fault). When you do meet up they have moved on with their lives whereas you have stayed still.

    It is lovely that you have time for your grandchildren, you are building memories for them and there is no price on that.

    Good Luck



  • Nancy, I have come round to the idea of retiring but it is that social aspect that I will miss. I know that as time passes we will have less and less in common so will lose touch. I will just have to make friends online :-)

  • hello Linda, this is my 3rd attempt to talk to you computers playing up.What I have been trying to say is that I think that seeing the rhumy is a good idea it will be a lot easier for you and every one else to make descisions with a definate diagnosis.I dont know where you live but here in the b`ham area I was given an appointment for a rhumy within 3 weeks and an appointment with a neuro a week later. so hopefully it wont take you long either .......now as for getting depressed and wanting your old life back, I think we probably all do from time to time. I had a flare 3-4 yrs ago that never settled down again. On talking to the neuro we worked out that I had had a mild form of fibro for over 20 yrs during that time I had raised 2 children looked after an elderly cantankerous father and worked part time.as well as having several major illnesses. I could not get a full time job no matter how I tried , but then who is going to employ some one who has to tick yes on almost every box on a medical form that says have you ever suffered from....I wouldn`t ....Dont get me wrong I loved my job as the cleaner in a test lab. I was lucky in a way, though it didn`t seem like it at the time, both my son and I were made redundant and the lab closed down just after I started tests to find out what was wrong with me. my hubby was already on benefits due to his illneses and I was just sort of tagged on .My son was soon taken on at another lab and is now a manager I was offered another job but had to turn it down................I miss working, company, long walks with my dog, just being able to jump on a bus and go shopping, being able to cook a meal without taking all day. Do a bit rest,do a bit more. Most days I can happily sit and sew or crochet but somedays like today my arms are too painfull I have them propped on pilllows while i.am typing with one finger..........Oh well at least the 2 fs..Fog and fatigue are not too bad Thats my blessing for today no fs lol hugs Sue

  • Sue, I am with you all the way. I too knit, crochet and sew but only when I can and in fits and starts. I think I will wait till the retirement stuff is out of the way then press my GP for a referral and see what happens.

  • Hi Lruk

    I have read your post with a very heavy heart and I sincerely empathise with your plight. You sound like a truly wonderful human being who is suffering at this time and it doesn't sound like your doctor is helping or being supportive to you. I can truly understand your decision to carry on working, after all, work gives us the social interaction that is essential to all human beings. However, I don't think that after everything you have done and everything that you have been through that you have anything to prove to anyone. You are an inspiration to many able bodied folk who simply give up at the first sign of difficulty.

    I think if I was in your position I would take the rheumatologist appointment and discuss your situation with them before I made my decision.

    Take care and I sincerely hope that you can get things sorted

    Ken x

  • Ken, thank you for your lovely words, they have brightened my mood. Linda

  • Hi Linda,

    No one here thinks you are moaning :-)

    I read your post and am amazed at how positive you are - taking pleasure in the small things as and when you can.

    I too have no official diagnosis as yet - it is so frustrating and as you say, it would be great to have some sort of timeline, some time in the future identified that you can look forward to, a time without pain, a time when I for example can wash my own hair again, can walk for more than a few minutes without searing pain. From what I have read here an appointment with a rheumatologist sounds like the sort of thing that can really clinch a diagnosis for Fibro.

    Is it possible that you can do that after you work has sorted out their paperwork, so that it does not interfere with your process?

    The fact that it has taken 2 years to diagnose you is awful, and the pain you are in sounds terrible - I am assuming the docs have thrown all manner of painkillers at you? I have been on everything from tramadol to gabapentin and as yet none of these have worked, you probably know all about that.

    It is so wonderful that you can find ways through the pain to be close to your children - you sound like a very strong lady.

    As for work - it feels rubbish when you have given so much to them, but you also feel you do not want to let them down - so it is a difficult process.

    not sure if this is relevant to you, but would you not be entitled to some sort of financial assistance due to your condition? The citizens advice might be able to advise there - just having some of the financial stress / burden taken off you might help?

    Its sounds to me that you are doing an amazing job at staying positive and being a brilliant Mum, sending you big hugs


  • Mrs Somerset, you have absolutely made my day with your kind words, thank you. Yes, I think that once the paperwork on the retiral thing is sorted I will push for a firm diagnosis and perhaps even a referral to the pain clinic. I have recently spoken to someone at DWP about a PIP application. The form arrived yesterday and is so thick I haven't had the courage to even read it yet! I got halfway through the help notes and gave up but I will get to it over the bext week or two. I think I will phone my local CAB and/or benefits pplace to see of they can help. I am sure war and peace was shorter! Wishing a lovely day, Linda

  • From personal experience of being medically retired after 15 years from leaving my job, i wouldn't have got it without consultants reports, so if i were you i would head down the line of proper referral otherwise you will find that your application will most probably get turned down. I even have to go through various appeal stages.

    I was born with a disability but it was just as hard, or harder to get through.

    Get hold of the paperwork appertaining to your early retirement claim and read up what the medical officers will be wanting.

    Some claims require you to be unfit from any work up until your pensionable date, or in my case, i hade to be unfit to do my actual job, however the appeal judge whom i had an extensive discussion with rather than attend the appeal hearing said he doubt I would be able to return to paid employment.

    Some pensions will allow you to claim at 55 anyway, some at a reduced rate, or some at 60, it will depend on your individual pension arrangement. It is a long process, i wont deny that, but a consultants letter will hold more weight than a GPs letter, although both are useful.

    If you are claiming ESA then any pension you are paid by your employer over the amount of £85 the amount over is divided into half and that amount is deducted from your benefit. If you claim income based ESA it could effect you even more.

    It is a minefield, but first off to get your claim for early retirement through, find out what the medical officers will be requiring. Depending on the pension company, the info may be online.

    I wish you luck, but please do make sure you get as much medical evidence as possible xx

  • Thank you for your words of wisdom, Fibro. As far as I can tell, having contacted everyone and anyone I could think of, I am entitled to my pension at 55 , which I will be in May of this year, but only what I have paid so far. As I have fibro and lymphoedema, both of which are covered under the equalities act, and my application is likely to take at least until April maybe longer, I am very likely to be retired. The question then is am I likely to be able to go back to my own job in the future or will I be fit to do something else in the future. The answer to that will decide if my pension is increased or not. I am not currently claiming any benefit so I am ok there, for the moment anyway. I have decided to push for a full referral once I have a decision on my retiral, I can't afford to delay it for financial reasons so I may lose some money in the long run but not having the stress of constantly attending meetings with my employer and occupational health as well as my GP to relate how crP I feel and how things have only got worse since the last time I saw them will be payment enough. Linda

  • Bless you, i know how stressful the claim can be. Depending on who your employers are,what your personnel/human recourses are like, which Occupational Health company they use and who your pension provider are.

    I understand the need to have made the claim before the date from which it can have been paid because if your due date is age 60 but you are allowed to claim at 55, it will be reduced to take into account payment for the extra five years, but if you win on health grounds it will be at the enhanced rate as if they were paying you from age 60.

    I wish you luck and will be routing for you... If thats the right word! Having been through it, if you need to chat just message me. Xx

  • Thank you x

  • Hi Linda you will cope we do! Your description of "running in high heels" how right you are that just about sums it up!!

    The magic word you mentioned is "Pacing" once we crack the art of a little bit by bit and not trying to jump in with both feet and run a marathon then we find it is easier.

    Weather it is ever easier to accept our lot I am not sure but we all need to keep hanging on in there :D


  • Hi Gins, you are so right, we do cope, all the time regardless of how bad things get. I am trying to get the hang of pacing but it sure ain't easy!

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