Just wondering

I originally stopped work after a paranoid schizophrenia diagnosis. I contested this diagnosis at the time but the mental health hearing I had to attend (with my lawyer) seemed determined to describe me as schizophrenic of some kind. I've never had an hallucination or heard voices. I've been on incapacity benefit and income support to pay the bills. I've recently stopped the schizo meds as I recently found out I wasn't forced to take them. So, I've thought about a re-diagnosis but maybe the schizo diagnosis is keeping the benefit people off my back. Would a fibromyalgia diagnosis make it harder to claim the benefits? I've felt reasonable the last two days on my bed but walked to my fathers house today and my thought was I'm not going to get much done if I try to work. I just wouldn't be efficient enough. My official diagnosis is schizophrenic and this has led me to believe I'm unemployable so I don't even try. Who would employ a diagnosed schizophrenic? Wrong attitude by me I know. A lot of people seem to be worse than me but pain discomfort is subjective I guess. I don't know what the correct diagnosis is for me. I don't feel like trying much cos I am sure I'd get sacked pretty quickly and I would like to avoid the embarrassment again.

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  • Hi minesawhiskey I'm sorry you have been diagnosed as having Schizophrenia, apparently it's the most difficult disorders to actually work but employers can't discriminate against you because of your mental health. There are lots of famous people that were schizophrenic, artists, painters, musicians.

    So definitely don't lose heart, go speak to someone at the Job Centre. the are usually very good with this sort of thing and they will help you find the right kind of work. Is working part time an option. How bad is the schizophrenia, the best thing you can do is go to job centre. go to the government's site for mental health, it explains it better.

    I do hope you find work that suits you,

    Peace, luv n light Jan x

  • Hi, many thanks for the reply at this time of night. My Valerian root tea doesn't seem to have taken effect yet. I've always been dubious about my paranoid schizophrenia diagnosis but so far as I've found out it is true that you don't seem to have to have hallucinations or hear voices to be diagnosed with it. The reason I'm on this site is because the symptoms I complain of seem to fit with a lot of what people are saying on here about fibromyalgia. It's these type of symptoms that mainly make me "feel" like working is not an option. Although my foggy head could be schizophrenia, god knows! Am not sure why i mentioned the schizophrenia thing here, I don't admit it to anyone because of the shame it makes me feel. It's just I'm off the mental health meds and my doc might consider Tramadol. I've just read a post on here from 5 years ago saying opiates don't suit fibromyalgia. That doesn't seem to correspond with many recent posts.

  • Hi

    Have a look on Mind web site not everyone experiences all symptoms and unfortunately it would make it harder to claim benefits it you just had a Fibro diagnosed

    I know lots of people with some sort of Mental Health diagnose and many work doing charity work of some sort.

    You don't say how long you have stopped your meds so please be careful if its only just recently .As many people stop them as they don't feel they need them and then end up very unwell.

    You don't have to take your meds but if Mental Health Team become concerned you can be sectioned

    What ever you decide just remember you are the same as everyone else. its a illness and many people are living with mental Health illness or illnesses of some kind .

    Best Wishes

    Rose

  • Hi there, yours is an interesting and honest quote that asks questions that i have never considered but i have a friend who is nearly recovered from a major physical op and will soon be asking similar questions. Firstly re your meds, im going to compare what you have said to my own situation with meds, but no im not on similar meds to you and no im not you but its the only comparison i can try and help you with. I take 218 doses of medication a week for 2 medical diagnosis, Rheumatoid Arthritis and Type 2 diabetes, i have plenty of symptoms and side effects some just caused by the meds and i take meds to counteract some of the meds, i hope that makes some sense, only 2 of the meds or 42 of the 218 doses are actually to treat either condition, the rest are to treat the symptoms the diseases cause etc. I have refused to take additional meds when offered them and have electrd to try and deal with some symptoms in other ways or just live with them. The reason for me is that my bidy is just a chemical plant controlled by meds which are doing me more harm than the diseases, my diabetes has been there 10 + years and is completely controlled BUT only if i dont change other meds or my diet. My RA is not controlled and causes me terible pain and immobility, i constantly flare but cannot take nany of the stronger meds due to extreme rejection. I take large doses of pain relief but only enough to allow me to function at low level because if i took stronger i would drift through days in such a haze of confusion that in my opinion my time would no longer matter. I have tried over the last 3 years to reduce and cut out various meds, some without success and some that i decided i could cope without. This has been a very difficult time because slight changes in medication can take weeks or months to show up or days and until that change has settled or changed in effect it is pointless trying to change anything else. Sometimes i didnt notice the change but others did or maybe i was so determined to cope without the drug or a smalker dose i wasnt being honest with myself. I am not suffering any diagnosed mental illness although i would argue that almost everyone coping with chronic or acute physical diseases is likely to be effected mentally by their condition or their medication. I think i have almost reached a balance that i seem to cope with but it has been a long and difficult 3 years during which my symptoms have changed anyway and to be honest i have ended up almost where i started. What i would say to you is this, i have suffered worse mental health as a result of changing my meds and i would say to anyone altering anything to take advice before trying it because you may not understand everything a drug changes short term or long term or how it is affected by other drugs you take, you also need to look at what you are trying to achieve before doing anything and if that change is worth it and you also need to be completely HONEST with yourself about non prescripted drugs and substances that you also consume and how much, for example caffiene can alter tiredness, diet affects a multitude of things and alchohol changes many. Your question is well written and you are obviously thinking carefully about the questions you are asking others but you also need to think carefully about the questions you are asking yourself. No 2 individuals are the same in how they cope with mental or physical conditions or diseases and certainly not how they cope and re act to medications. I think it is a very positive thing to question from time to time what we are taking and why but i believe any changes should be considered from a position of the best knowledge and advice available and ONLY with the help or at least knowledge of ALL the medical and care team around you and all family and friends. This i believe is true for physical diseases and doubly true with mental illness for many many reasons.

    So my advice is PLEASE think very carefully before changing anything to do with meds and get as much help and advice as you can before changing anything that may make alter things for you, one thing for certain is that small changes now can make big changes long term and not all changes are reversible.

    Thank you for reading my reply, which i have to say is no more than an opinion and should not be taken to be right or wrong, because you need to find what works for you and how you feel and cope. I hope my reply helps in some small way and that you continue to find the best way to cope with how you are, who you are and moving on in your life with what is positive and the best for you.

    Kindest regards, Leon.

  • Hi minesawhiskey,

    Useful replies you're getting and I suggest you talk to your Doc and the Mental Health team especially as you've come off your meds.

    As suggested you need to be honest with them all and yourself.

    Goodluck

  • Hi, yes, thanks for the time and effort in the replies much appreciated. I wrote my comment last night in the frustration of not being able to sleep! I'm just awake and having breakfast, decaf coffee all today as I've read too much caffeine reduces vitamin absorption and I'm vitamin d deficient. My diet is good I think. I eat a load of vegetables 99% of the time, my favorite lunch at the the moment is homemade mackerel pate and I've upped the amount of times I have garlic mushrooms as they are good for vit d. I've been off mental health meds for 10 weeks now and feel no different. I've tried stopping them as the side effects from them did have some similarity to how I feel. As I've never heard voices or hallucinated I thought it was safe to find out if they were the cause of my discomfort by stopping taking them. I don't feel any different at all so far. I've new blood tests tomorrow and a bone density scan in a few days. It's worrying that a new diagnosis might make benefits harder. I just don't see how I'd be productive enough to be employed even if I did turn up. I don't think I can expect a company to pick up the extra cost of my inefficiency. Maybe I'm just best having a diagnosis of paranoid schizophrenia with borderline fibromyalgia or something.

  • Good luck for tomorrow

    Is there any job that you think you might like? Have you worked before?

    I love my job and am just about hanging on to it, maybe its selfish of me but I feel that I would be so much worse without it. The complaint is always 'you're good when you're here you're just not here enough' but ignore it and just keep trying!

  • The job I was good at was as a manager at a trust company. Life started to fall apart in many ways after I chose to leave following a run in I had with a clients lawyer. I potentially made a mistake and the company I worked for was threatened with being sued. Although the company I worked for backed me up and they did everything to make me stay and see the situation out I chose to leave. The discomfort I feel now didn't start then though. I could work slowly in a back office of say the vehicle licensing department or something, somewhere where I didn't have to speak too much as little do people know it can be an effort.

  • Might be worth seeing a Careers counsellor or equivalent who could talk you through the jobs available these days...

  • This is a well thought out question. My husband has depression and anxiety and had to give up the job he had for 38 years as he had a breakdown. A few years back he started to feel a bit better and didn't like the effect the drugs were having lethargy and sleeping alot so decided to attempt cutting down which he did to a lower dose. Unfortunately in his case it was a wrong move as major illnesses and deaths in his family made it difficult for him to cope and his mood and anxiety plummeted back down and he had to go back on the full dose.

    He was advised by his mental health team that often if a tablet is required and is then reduced it is hard to get that tablet working in the same way again. He has complications as he also has Epilepsy so many depression tablets are a no no for him so his case is slightly different. What I am trying to point out is that is your meds are keeping you stable enough to cope with life and are not giving bad side effects only reduce with the support and agreement of your mental health advisors.

    Re Tramadol it personally doesn't suit me at all I get no extra pain relief just a stonking headache but that is just me. None of my GPs have been keen on opiates as they feel for fibro alone it is very ineffective but if you also have another illness that requires quite heavy duty pain relief it can be good. Often other sort of painkillers, pacing, gentle exercise and alternative therapies can help fibro immensely.

    Re benefits - many unfortunately on the forum who have fibro as their only illness but have been suffering nevertheless from horrendous symptoms have found it difficult to get benefits. Those who have had fibro + other illnesses seem to have found it easier.

    Hope some of this rambling helps, please let us know what you decide and how you are doing.x

  • Hi,all these replies are great. I guess my thinking was that I feel the same off the mental health meds as i do on them so the less I put in my body the better. Ive also stopped the Procyclidine I was on for side effects from the Risperdal Consta I was having. I understand the point about possible consequences of coming off them but I was never convinced of the original diagnosis and wanted to try and eliminate a potential cause of how I feel. I've blamed it on the meds for years. So, the purpose was to find a better diagnosis. Though if it's fibromyalgia it seems there's no real cure and I might struggle with getting benefits ironically so it seems going down this path might not seem to lead me anywhere. I've been through loads, once trying to sue my conveyance lawyer, put in prison for not paying a fine when I swore loudly in public at persons who were attacking/harassing me, to being 18.5 stone after starting meds and then losing 6.5 stone subsequently from dieting. I sometimes wonder if any of the situations that caused me to be sectioned originally were just outbursts at feeling so rough and not knowing what is was.

  • I don't really know what to suggest as you have had some really thoughtful and helpful answers.

    I agree with rosewine that it is more difficult to get benefits for fibro alone, those that are successful generally have something else too.

    I wish you Good Luck whichever route you chose.

    Kay

  • I used to be a mental health support worker and I did start my nurse training, so I would just like to add my part if I may?

    Re work. Everyone is different. My partner has psychosis and delusional disorder and he's not on this planet half the time. Yet he works full time and drives an hour to and from work everyday. I have unstable personality disorder, as does my brother and there's no way either of us could work. I was put into ESA support group on the grounds that I'm a danger to myself/others and so work related activity would not be reasonable. One thing I would say is that if you deny the existence of the mental health problems and they write to your GP they will more than likely indicate this diagnosis which means they will probably take it into account anyway.

    Stopping the meds- I can sort of see the issues here and why you're not mentioning it. I notice someone said that if your team get concerned because you're not taking your meds so they will section you I'm sorry that's so wrong it's almost dangerous. This is not true. Sectioning is a LAST RESORT and will NOT just be done because you aren't taking your meds. There is an acute shortage of mental health beds in the country and it's literally the case that for a section to applied you have to be in real crisis which it sounds to me like you're not. There are other things that can be done (not going into what they are) but I've seen people non compliant for years and not sectioned. I'm non compliant myself because of my thought disorder issues but mine is a disorder that can't be helped by medication anyway so my psychiatrist isn't much concerned.

    I know plenty about the effects of Risperidone- my partner has been on it for years and it's not really helping him to be honest. From what you mention none of those things much sound like schizophrenia but once you've got a label it's impossible to get rid of.

    Re work- if you speak to the Disability Employment Advisor at the job centre then they may be able to arrange a work placement for you. This is an unpaid voluntary placement for a short amount of time and it will help you to see if there was anything you could do. I did one and loved every minute and got great feedback. It doesn't affect your benefit and as it's an officially organised one shouldn't cause any problems. I've gone a bit downhill since I did mine unfortunately so couldn't do one now but it was a really good experience for me and may help you too.

    Good luck xx

  • I'll intend this to be my last comment about my situation for a while. But just to offer a balance about being sectioned. I was sectioned originally then after this I always seem to have been led to believe by my mental health team that I had to take them. Maybe my mistake here. But they definitely for a long time have implied that if I came off meds the chances of me being sectioned could be high. So, I've just got on with it until recently because I got truly fed up feeling so rough and looked into other things.

  • Hi minesawhiskey

    I really am so genuinely sorry to read this and you have had some wonderful replies so I will simply and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

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