Could do with some advice, struggling to cope:(

I have been diagnosed with fibromyalgia, suffered for years with the pains, my hub is registered blind & i'm having to give up self employment as I simply can't cope anymore. I have no bath only a downstairs wet room/shower/toilet. I have no toilet upstairs & coming down in the night ( my stairs are steep) & going back up is horrendous. I just want to bathe in hot water, im finding the pain hurts, brain fog in full swing, morphine & tramadol enough to dose a horse is brutal. I just want to soak my bones to help with the pain. I'm in council housing & the house has already been adapted with the wet room & kitchen extension, when the extension was done they built the foundation for a double extension, meaning as & when hub needed the toilet upstairs it can be done. Can I now get the DFG to help pay for this alteration? would they see I would benefit from being able to bath, the healing from water can not be denied, but would they see it a s a reasonable request? This illness is so devastating, my passion & business is slipping away, im left in agony or wasted on pain relief & feel surely can I not get help with this! I don't not want to work, I did my business to help pay for anything & everything to buy as much useful tech for hubby, not a lot to ask a washing machine with digital display so he could see it etc, i've supported my family & rent/bill's but now i having to make the call to step back & it feels like the worlds just dropped at my feet. I'm used to being in control. Any advise would be appreciated, i'm totally lost among all this, I have tears every morning as the pain I wish it would go, all I want to do is have a bath , not alot to ask, just not sure if the council would agree? My brain fog is real bad, I have to remember & do some much running a small business, im shattered, hurting & a bit of a mess right now, please tell me I can get some help, if i'm lucky I have a 4 hr window of working or doing anything, 10am-2pm ish, in between medication, the other 20 hours....well you all know the symptoms of fibro so not much quality / fun there at all:(

16 Replies

  • Hi.

    A big welcome to our site off merry men & girls.

    Please feel free to ask for as much help & support that you need ????

    We all have got good experiences with Fibromyalgia "unfortunately"

    Please please let me help you if I can ????


  • Hi echoscar, I just had to reply to your plea. I am not sure if the council will adapt or provide you with a bathroom, I just felt so touched. You sound at your wits end and I would just like to give you a big hug and tell you everything will work out in the end. There are so many knowledgable people on this site, and all so caring and helpful, I am sure you will get lot's of help. I hope everything turn's out well for you.🐼😀x

  • Hello Kingsusyq, thank you for your reply. I am totally at my wits end tbh, too ill to do my beloved little business, I feel distraught with the rentless pain, feels like it never ends, im devastated to give it all up, but after all the hard slog I just ache to much & just end up a mess & in tears, can't sleep, eating makes my jaw cramp, headaches, restless legs, inflamed hip, shoulder , trigger finger/back pain just to name a few & on top a blind hub......i really can't take much more:( oh & I don't remember half of it anyway, to be a mum & due to fog you can't remember where your children said they would be is all a bit much, thankfully they are grown up, but for months I was embarrassed to say, once you diagnosed it all starts to make sense, just hearing it never goes & you can only manage pain is the hardest thing ever to accept. I just don't want to forget me , but please just 1 day let me have a soak in the bath to sooth my joints & bones, I'm my husband's carer & feel i've let him down:(

  • Please don't feel you have let your husband down, a bet that isn't the way your hubby is seeing it. He is probably hurting because he can't take your pain away, so you'r probably both feeling the same way. Just talk to your hubby and tell him how you feel and then just give each other a big hug. Because a problem shared.... I have no idea how you would get the ball rolling with the council, but there are plenty of people on this site that probably do know, and I am sure they will be quick to help. Just remember that the more you worry about this, the worse your going to feel because it makes your fibro even more painful. I do hope that you get all the help you need as you are obviously struggling. If you lived near me I would say, hey get your butt round to my house and have a nice soak in the bath. I do hope your pain eases, but you have to try and let go of the tension. I bet if you think about it this very minute, I bet your shoulder's are all tense and raised under your ear's. That will cause your headache and your jaw problem, just for starter's. I am sure I am just telling you what you know, but when you get yourself into a state, it's hard to see thing's clearly. I hope I haven't bored you, but look at it this way, while you have been ready this, it has kept you from thinking of anything else.🐼😄😊x

  • Pls get the Social work department involved and ask to be assessed by a Occupational Therepist!

    I'm sorry to here that you're stuggling my friend, there is help out there! Pls get them involved, and see what can be done to meet your individual needs :)

    Take care, soft hugs,

    Elizabeth :) xx

  • Hi Echoscar

    I'm so sorry for you. You are going through it. I 'd be very suprised if the Council would do that for you. I'm starting to find out that fibro is not always taken serious or classed as disability. Will you continue to work or apply for benefits? Are you registered disabled? I've had a lot of hassle just lately with benefits and have been in tears. However I found this site and have been helped by so many people on here that you feel like they're your family. Some one advised me to ring Disability & care advice. I called this morning and the Lady was so helpful and reassured me that I would not loose my home. Also another thing someone recommended was to find a Disability Advote in my area. They too were so helpful and they're sending me a self referral letter to fill in and then they will support me. All that done in a morning. Hope that's helpfull to you but you will get good advice on here.

    Take care and I hope you can get sorted x

  • So sorry to hear what you are going through , we've all been through it at times but you have the added worry of your husband to look after, I don't think think the council will do further adaptions if they have already done a wet room kitchen etc, but no harm in trying ask your social worker , good luck

  • I recently refused to have my bathroom turned into a wet room because a bath is the only thing that helps with the pain ,but since my husband fell getting into the bah i have been having second thoughts ....thanks to a camping group making fun of having a bath in a tent i discovered inflatable baths. I recon that one would fit in a wet room ok . if you type inflatable baths in you will get a good selection from about £40.00 upwards. i have also seen folding baths made from silicone that folds flat against the wall.

    I know it feels that things will never get better, but they will. I think that i would give welfare rights a call and ask them what benefits you can claim if you give up your business. Stress and pushing yourself to try doing what you have always done will only make the pain worse.

    We all have to learn how to pace ourselves, to learn just how much we can do and what will make us worse. I dont know if you have been on our mother site where you can find out more about managing symptoms. the link is

    I can understand your feeling of no longer being in control. For almost all of our married lives i accepted that i would one day become my husbands carer as he was diagnosed with one illness after another. since my diagnosis he has had to do more and more, now its not me popping in the shop. sorting bills and doing the garden and i feel so guilty that he has to do it and i often think that this is not right. its not supposed to be like this. i should be caring for him.

    I hasnt helped that our welfare rights lady sent us a form to sign making him MY carer.

    I will get used to it. I must. I must make the best life i can for both of us.

    You dont say if you are on or have tried Amitriptiline it is usually the first medication that you are put on and a lot of us find that it helps with sleep and pain.

    I also take Ropinerol for restless legs it works for me and without it i have 24hr a day.

    Do you go to pain clinic. have you tried hydrotherapy. You see. there is a lot that could help and you just need help to find what works for you. on this site there will always be someone around to help or lend a shoulder to cry on.

    Lecture over :P Welcome to the site.Sue

  • echoscar I was so sad to read your post. It is very difficult when you have been so independent running your own business, etc and feeling that this is quickly being eroded away from you.

    If your source of income is going you need to have a full benefit check at somewhere like the CAB or similar to see what you would be entitled to as financial worries will not add to the pain of fibro. You also need to ask for a full assessment from social services of yours and your dear husbands needs as if help can be given hopefully it will mean you can rest more which often leads to less pain.

    As you already have a wet room I don't think your council would put you as a priority case. They often look at these things practically and very dispassionately. There criteria is often that they will only spend money on something that would facilitate their carers if they are called into action. I know in the area I live in the local council often would not adapt a bathroom if a carers would not have space enough to get either side of the one being cared for safely. I am also of the opinion that if you don't ask yiudint get. If you could get the support of say your GP with prof that a bath would help your condition you might stand more of a chance.

    We moved into a bungalow because of my health and unfortunately it was a straight choice because of pace as to a bath or a shower and as my husband onky showered and I was thinking of the future as I was having difficulty getting in and out if a bath I went for the shower. I must say at least twice a week when the pain goes mega that I yearn for an Epsom salt bath so I can appreciate where you are coming from.

    I hate having to ask for help as I was always a go getting, independent woman who gave help and never accepted any and I too find this part of the illness the most difficult to cope with.

    Do find out what help there is in your area asap as this stress will only make matters worse. Take care and let us know how you are.x

  • Hi, Thank you for your reply. I can see what your saying regarding the wetroom etc, i'm happy to pay for this work to be done, I have no savings but I do have the use to some cash put away for tax, if the need comes then it will have to be dipped into & deal with the rut it will cause with HMRC, ive known for the last year this was the impending outcome, I'm gutted really as I put myself through re skilling myself & ticked along nicely, hubby was sorted with better equipment, we could live & pay the bills/rent, we have a very basic life as we both don't go out due to hubby's eye's, he has lost confidence & it's a big challenge, we do make the effort but running a business from home & the use of today's online shopping we don't have a need to venture out to much.

    It's really hard for hub as he feels helpless, he knows he has limitations & it's not making him feel better, he feels crap as he should be able to now cushion & protect me, he knows he can't & it's frustrating. He is on the "watch & wait" with prostate cancer & now this, don't rain when it pours as they say!!

    Ive managed between us to clear half the orders , the rest we will tackle tomorrow & as it's our daughters bd on Sat i'm taking a week off to try to figure how to approach this. I don't want to give it all up & between us there has to be a way. We had been there on benefits years ago due to his eye issue, but I wanted better for him & re trained myself & started my little business, it's doing very well but I just can't keep up with it, every day's the pain's so different & it's all just got to me now:( I think it's caused a slight break down, I am depressed I had it for years as it's hard when one day your hubby driving working & being an active dad, took 1 routine eye test & it all changed:( but I bounced back & built my business & it became my main focus in life, now that's slipping away & get left with pain every can be shit can't it:(


  • Yes life seems to have the ability to kick us when you are already down. My husband had always worked long hours and he had a complete breakdown and just a year later to the day I became ill and never worked again so from one and half wages we went down to nothing as we had to fight through two tribunals to get his ESA decision overturned. We are actually better off now than at any time in our lives as we have pulled down pensions early and changed in other things but neither of us are really well enough to enjoy it, ironic isn't it. All the things we had planned for retirement have gone up the swanney as they say. I think he feels the same as he thinks he should be fully looking after me even though I have always been the strong one emotionally the old fashioned sort if man was brought up to be the provider and if that role is taken away for whatever reason is it terrible for them.

    Yes take a break as sometimes we can just get so physically and emotionally tired the thought processes just won't work logically. I think this site is good as we can often ask for others input and together we might actually get to somewhere near a logical answer. Have a few days just putting any decisions on the back burner and then start your list of priorities.

    I for one think you have done a brilliant job so far you are just worn out and need a bit of me time. Take care.x

  • Hi Echos car, so sorry your feeling so low just now, I am afraid lots of us have gone through similar situation in having to stop work due to ill health. It is a very hard thing to accept but over time you will realise it's best for your own health. You really need to start looking after yourself now. You can self refer to physiotherapy now, you just give them a ring and they will give you an appointment, if you then explain about pain and lack of Bath they could send you for hydrotherapy, which is treatment in heated pool, much warmer than a swimming pool. This is bliss ! Have you ever thought of trying a sunbed for the heat, I do this just once or twice a year when I am desperate for the heat. The other thing to try is the sauna and jacuzzi, most local swimming pools have saunas now. Just a few ideas until hopefully you can get a bath put in. All the best

  • Hi, Thank you for replying. Your right in finding it hard to accept, i'm struggling with that hence the tears every morning, I lost my dear father 5 years ago, I know what grief feels like & this feels like grief all over again, does that make sense to grieve over who you were & what's lost due to illness??? I feel like a puzzle & this last year every week one piece is lost, bit by bit there's not much left:( how, why?? hows does it all change so quickly?

  • Hi Echoscar, yes,you are spot on. It is grieving for what you have lost, for what you used to be and used to do. Life changes immeasurably when chronic illness sets in and there is rarely any going back. It can feel like everyday you find something else causing you grief or pain. It is very much the same as when your dad died, you have to go through the process of letting go before entering the next stage of your life. I'm sorry, it is very painful but carry on crying, get it all out of your system, it takes as long as it takes. Best wishes to you

  • Hi echoscar

    Welcome to the forum and it is wonderful to make your acquaintance. I am so gneuinely sorry to read of the suffering and struggling that you are having to endure, and I was wondering if you had any family in the area to ask if you could have a bath at their house?

    I think the council would be reluctant to put you a bath in but there is no harm in asking? They may ask you if you would have a problem getting in and out a bath? It would probably be a good idea to ask social services for an occupational therapy assessment and take it from there?

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Hi,

    Thank you all for taking the time to reply, I will try to give a better update later, at the mo im in the usual mess of crying in pain & feeling there's just no point anymore:( i'm trying to pull myself together to get some orders out:( I have around 80-100 orders over due as all this week it's been a mission to do 5 or so.

    To the person who say's Amytripiline yes im on that, but don't seem to help.

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