hi, I wondered if most people on here still work while on daily medication? I work full time shifts 1pm-9pm five days a week

[emmaca]

i take Tramadol and Amitriptyline every day and am very sleepy and woozy all the time. Its hard to gauge if i am expecting too much of myself whenb i dont have anyone physically there to ask

[Angelpaws]

The answer is that only you can tell when you have had enough. It is a huge decision to start to accept that you have a disability and may not be able to carry on with the work you do. Your employers are bound by law to support you, but can only do that when you declare yourself as disabled.

Some of us make that decision when we simply can't deal with the pain any more, and some of us have it forced on us - mine was through a stroke nearly 3 years ago.

I am starting to accept that my life is a different shape now, and that I have a different kind of normal, but it is never easy. I have to say that no doctor or other advisor or medical person has ever said to me, you can't carry on working, but when I was forced to admit I couldn't do it anymore, they all agreed with my decision.

Listen to your body, and take care of you.

[lurcherlass]

Have carried on through necessity but have a very sympathetic GP who helps enormously with meds and is very good at prodding the consultants at the Pain Clinic. In addition, on the occasions when it has got on top of me and I cut back and stop doing normal things, I've found that depression kicks in really fast and a feeling of hopelessness and helplessness makes matters worse and seems to make the pain more present.

Angelpaws is right, you can do more on some days then others and you need to listen to what your body is saying, the Tramadol was fine for me for a number of years but now take Oxycontin and Gabapentin but only take the Amytriptiline at weekends and when I have 'days off' as it completely zonks me.

Really good wishes whatever you decide to do, only you can know xxx

[ladybear]

Well done for staying so determined and focused that you are refusing to let your condition rule your life. That takes a lot of courage. Giving up or cutting back on paid employment must be, to my mind, one of the biggest side effects of a condition and raised the reality of potential isolation that can cause depression. Certainly, for me, inability to work is the hardest thing to cope with since it involves free choices and self esteem.

You mention that you are on Amytriptilne which is often given to help pain relief as well as muscle relaxation and sleep. This medication has serious sedative side effects and a warning is given not to drive or use machinery. My big concern would be how this medication effects you. ATOS pay no attention to how a medication effects a person and it is seen as something minimal to be 'managed'. Medications such as Amytriptiline surely cannot be classed as having manageable effects? I take this medication and at my ATOS appeal I stated (in truth) that 'I was made a danger to myself and others' by the sedative effects of this medication and so I was not fully in control of my response to situations.

I agree that a person's decision to work is unique to them since only they know how a medication effects them in a working environment. My greatest concern is that ATOS is taking away this choice and many on medications are putting themselves and others at risk of harm by driving or working in environments that require alertness or dexterity.

[colboy]

Hi I have had back problems since 1970 when I was put in a plaster jacket for six months which was not very pleasent I have now developed ostyo arthritus which is very painful I have worked since 2007 when I lost the use of my legs again and as a HGV driver ment I lost my HGV Licence you might of just killed me off, The result was sever depression and very bad mood swings . I take 100mgs Zomorph morphine sulphate in the morning and use 2 100mgs Paracetamol and 2 Dihydrocodeine every six hours if need be I do have 6 mils of Oramorph oral solution if the pain gets bad or I over pace myself at night my medication is 100mgs Zomorph and 3 25mls Amitriptyline with Fluoxetine 20mgs and 1 Simvastatin this helps me sleep but I have been Mediaclly Disabled since 2007. and my doctor who is the best know's I realy could not do any work I can't sit for any time and can't bend so I have had to pack in work I saw a speciallist who said that he could work on my spine but I would would have a 70 x 30 chance of ending up in a wheelchair so it was a no brainer really I just put up with the pain and pace myself as instructed by the pain clinic who were great. Hope this helps if your company don't know you are on medication you should tell them because if you fall asleep and have an accident you may not be covered by insurence this is a must do for your safety they may alture your hours if it helps you.

[Hidden]

I have actively refused painkillers because I want a life. In the early days of my treatment I was on some heavy stuff, which I was weaned off. Those days were spent sleeping or wandering around in a fog of not knowing what was reality. Yes, they did what they were supposed to do at the time, slow me down so my body could heal. I certainly could not live like that.

All pain killers are for short term use. There is no longterm painkiller. That is why you build up a resistance over time and need stronger and stronger pain killers, which may kill the pain but make you unable to do anything else.

I use meditation, relaxation, distraction, exercise, music, anything that makes me feel good. I have a daily routine I follow and build all these things into my day - sounds a lot, but each is only for 10 -15 mins at a time. And the only side effect is feeling good.

I left employment to start my own business and I manage to work 6 hours a day. I am in control of how much I work, people are understanding if you explain why something might be delayed.

As for not being able to work, there are plenty of freelancing jobs you could do, in your own time in your own home. If you can post on a forum you could do data entry, if you can write on a blog you could do admin. There are some very good on-line employment agencies who value you as a worker whether you earn a tenner a week or thousands. Freelancing enables you to set your work hours per week, you may only manage one job that is a couple of hours spread over the week, at least you have done it in the time you said. The contractor doesn't know that that's the only job you have on the go unless you tell them. They are used to people fitting things in around larger projects.

Being self employed doesn't affect your benefits in any way as long as you keep your income below the tax threshold. I bet everyone could do with £6000 a year more money.

When I was presnted with the huge list of things I couldn't do anymore, it depressed me because I couldn't think of anything I could do. Then I thought thjis is rubbish. I crossed off all the things I would never want to do like skydiving, potholing etc. Then I took each remaining item and worked out how to do it.

There was a time I couldn't even walk round a supermarket without my body locking up in spasm. I built up my walking time and now manage an hour easily, up to three with moderate discomfort. Yes it was boring and there were many tears and tantrums but now its not a problem.

I think the best everyone can do for themselves is think outside the box, find new things to do and achieve. Find new ways to do old things, become more than just Mr or Mrs with chronic pain - I used to chat in a forum to a guy who was paralysed from the neck down. He had use of his arms and hands. He went to work every day. His employers rigged him up with a bed with a hole cut out for his face. They placed his computer underneath and he worked like that. He had a headset for phone use which he activated through the computer. He said computers saved him from a life of depression and uselessness.

[Taizie in reply to Hidden]

New to this site, I was wondering if you would recommend the online employers for freelancing-I'm worried about opting for an illegitimate scam site! Thank you

[Hidden in reply to Taizie]

People per hour is UK based, staff are very helpful, you set your rates, connect with contractors by bidding for jobs. They have a free option which is good to start on, they take a % fee and paypal fee of 2.5%. There are forums you can chat in with other freelancers. After each job you can ask the contractor for feedback which is logged onto your profile page. And you do the same for the contractor.

PPH is now open, you can bid on as many categories as you want as long as you have the skills to do the job. You get 15 free bids each month and you can buy more if needed. It takes a while to break into it, but once you have a couple of positive feedbacks its easier. Read the profiles of the people in your job field, see what they do, and try and find an angle that they haven't covered to give you the edge.

I have a daily email sent to me with all the new jobs in the categories I'm able to work in but I also do a search with key words through all the jobs as contractors don't always post the jobs in a logical place.

Elance is American and much more rigid. You have to fill in weekly time sheets, meet agreed targets and are paid in dollars. You can have 2 categories, but can change every 24 hours. Not had any dealings with the staff.

It depends what type of work you want to do but I would definitely recommend PPH, just for ease of use, support, friendliness etc. Their blog is full of great tips on how to do things as well.

[Taizie in reply to Hidden]

Thanks a million, very helpful! Fingers crossed all will go well!

[Hidden in reply to Taizie]

Good luck,

[Hidden]

Anglepaws

I am sorry for you with the meds I am on the same as you,also take rellaxation tecniques as instructed by CPN and pain clinic. Also I am on immuno suppresssents that are called dmards

When on latter you feel like you have drunk several bottles of wisky, although you cannot drink they kill the liver.

Today I am waiting for the rhum nurse too call me as contraindications are setting in so I will

need to come off the medication straight away, then possibly will need to have my body flushed out, So i sympathaze. I am now at a loss on what too do, The medication that I will have too take now is cancer causing, so what am I too do

All I can suggest is that you purchase a V TENS that acts also a EMS, we try to be positive,

life is a bitch , the ferry man needs paying by us all. Not at risk yet but feel fed up I should not give people my troubles we are all on a journey So chin up , keep a hold and do not let the b....win All the best do not worry.

[emmaca]

hI all,

Thank you for all your kind replies.

My employer does know that im on medication and are trying to be supportive. They do keep mentioning that i should consider reducing my hours but I cant afford it. I have put in a claim for DLA but have just been rejected - feels like im continually being kicked when im down!!

[teadrinker]

You are doing really well to go to work on tramadol - I can't even stand up when I've had that. Working on medication and / or with pain is really tough, so don't be too hard on yourself. I know that if I'm going through a bad patch I am not going to be as productive and it will take me longer to get through the workload. Sometimes I resent this, but mostly I am grateful that I can work.

I reduced my hours a few years ago but it didn't really help because I was always there late trying to catch up. Sometimes it feels better to just get on with it.

I know that feeling of being kicked when you're down, but just remember that you are getting yourself out to work and that's a massive achievement in itself.

[emmaca in reply to teadrinker]

once again im really thankfull for all your replies. It does help to know im not on my owm and also makes me stop and think when im pushing myself too hard. I sometimes almost send myself crazy thinking that maybe im being lazy as i could sleep all the time or because i cant hoover the floor all in one go!! Im hoping that my DLA claim wont be rejected the second time and then maybe i can look at cutting back on workload. It also would seem to validate to the outside world that i am ill, just because i look ok i get paranoid that people think im putting it on. I even to a certyain extent keep my limitations and pain from my friends and family. I cover it up when they are around and then pay the price when im alone.

[angelontheroad7 in reply to emmaca]

Hiya, I know what is like to be on tramadol. My husband had to give up his work to look after our son after my maternity leave ended and I went back to work as I cannot even lift our baby up or do the housework. I been on tramadolfor over 2 years and it's so difficult working as a nurse. I got injured at work but I never let that stop me from doing what I enjoyed. My colleagues calls me a walking pharmacy with all the pain meds I take in other to manage my pain.

Now I can't even walk and has to use the wheelchair about which is killing me and depressing if you are used to being active. On morphine oral and mst which just knocks me out. I reduced my hours so I can manage my pain better but this seems to make little different. I have been trying to get redeploye to admin job or even a lower one just to keep me going but I can hardly even walk or keep alert. Waiting to see my consultant on friday and if I get offered surgery I will take it this time. I have put it off since 2005 and now I can't go on. I want my life and my independent back

[emmaca in reply to angelontheroad7]

Hi,

Ive had a really bad day today, phoned my GP to see if could increase the dose of Tramadol and was told no. ive made an appt to go in and see her to discuss my meds, as im not coping well. My shift at work doesnt finish until 9pm and not sure how im going to last.

[Hidden in reply to emmaca]

With regards to hoovering a scandinavian study concluded that no-one should hoover for more than 6 mins at a time because of the way it distorts the spine.

I changed my carpets to wooden floors and sweep them - so much easier than hoovering and the house is cleaner because I do it each day as part of my exercise plan.

[hlh1001]

Hi there, I am currently on 75 micro grams fentanyl per hour in a patch and oral morphine 30mg a day but 40-50mg on some days.

I am a care manager who holds down a full time job and I am responsible for half of Norfolk county.

I can not work when the pain is bad but thats due to my physical ability and not being asleep on the sofa.

Nice to read you are out living your life despite the pain.

best wishes Helen

[Incartek]

I have had neuropathic pain for 10 years following a shoulder injury in 2000. I went straight back to work as MD of a medium sized company (so pretty stressful with a lot of travel), and soon found I had to pace myself. I tired more easily - and had to take more time off.

I must say I miss it now having just retired (I am 67) and the work has a therapeutic effect.

Maybe now the effect of a lot of medication and the pain has aged me physically and nervously - though mentally I want to keep as agile as I can.

My message - Pace yourself but don't give up. Work is a distraction from pain.

Best wishes

[VIkka]

The video from fibroqueen is excellent, I've never seen it described so well. I don't have the numbness quite as much as this poor lady and no twitching but everything else is spot on.

Although I hated giving up work (in 2005), especially as I was the breadwinner, I now feel so much better not having to force myself to function in a way I clearly was not able to do.

I agree work is a distraction, but so are hobbies, and not half as demanding. It's up to the individual and what kind of job they do.

As for the DLA, I was refused first time too, but luckily I had a lot of support the 2nd time and even went to a tribunal where I was questioned. I don't know if it was that they could see just what a state I was in (I have other conditions which are also debilitating) or the lovely people who came with me to help support me (I couldn't actually walk on my own, and it was before I got my wheelchair) but I haven't looked back. It's hard living with multiple conditions but DLA definitely helps.

[17firefly]

I worked for over two years after my pain started by over time I was able to do less and had to cut my days shorter to be able to get back in the next day. I would say speak to your boss regularly and keep them informed as well as your GP. About 8 months ago my boss said to me he thought I should go back to my GPs as I was having so many problems doing my daily work, when I saw my GP she said it was time to leave work as I wasn't fit enough. I would also sat is the time of your shifts causing problems as I find the later in the day the worse I get so could you change shifts? As the previous post mentions DLA I would say get help with the forms as it can be about how you answer the questions not about your condition. Always use your worst day for any forms.

Good luck.

[LEWIT]

Hi,

I think that everyone is different, pain can affect people in different ways and the way it affects work can vary. I can understand where you are coming from. I worked taking Tramadol and Amitriptyline and it was hard going because of side affects. Everyone is different and you need to make a plan if you feel like your struggling.

For me, I made mistakes because I was unable to concentrate, my employer wasn't exactly sympathetic and my condition became worse. Now I can't work and I hate it. In a way, I regret not talking to my employer more openly before my condition became worse. It is illegal for your employer to discriminate you if you have a disability.

I think when you are disabled or have a long term health condition you need to feel that you are doing something good with your life, contributing and ultimately this will help with the health problem because mind and body are intertwined.

Zanna your posts are really inspiring! There are so many things that you can do, with a disability. It is really easy to think of everything you can't do because it is the daily frustration. Listen to your body, work out what you can do without struggling and adapt your life according to what you can do.

Recently, I saw a professional who gave me some great advice - adapt to your health condition. I am in the process of making a new life plan which will adapt to my condition. Think carefully about what your body needs and go from there, communicate positively because there is nothing to be ashamed about. Having a disability gives you mental strength.

[dangreen2406]

I have suffered from severe neck and back pain golowing an rta in October 2003. I re-agrivated thy e injuries in winter 2012-12013 leading me to BBC be prescribed 300 mg tramadol per day (3x100), 900mg gabapentin per day (3x300), 10mg amytriptilene per night and 20mg citalapram per day.

I spend most of my time off my but on these pain killers and am signed off work by my gp who said I cannot work or even drive while under the influence of these pain killers. If I forget to take a dose i end up bed ridden in crippling pain.

I have 4 herniated discs and knackered rotator cuff (all 3 ligaments) and a knacked trapesius muscle as well as sciatic spasms and issues with my right leg. I'm Lucky to have an understanding gp but the local benefits agency is a different matter. I have been to 3 seperate 'specialists' who have all said I am not fit to return to work as a barman/bar manager owing to the pain killers I HAVE to take on a daily basis.