Health.com has written a list of twelve things you can do for someone in pain. It’s aimed at those with rheumatoid arthritis, but it would apply just as much to those with Fibromyalgia, as apparently those with Fibromyalgia tend to have a much higher level of pain, that’s constant in nature.
Some of the ones I like best include:
3) Slow Down. The lady describes going for walks with strangers, and they’d go at her pace, and allow her to lean on them at times.
I am very limited in walking now anyway, but back when I could walk, slowly and in pain, I was always grateful to those who slowed down for me, and allowed me to stop and rest without judgement. It’s so lovely complete strangers would do this, when I found it wouldn’t even occur to people very close to me.
4) Make a Bed. I’m lucky enough that I no longer have to do this as I have support in place, but at university when I had to change my sheets, it was something I dreaded. It left me in agony and I’d then collapse, exhausted for hours. I have since found this genius produce All Zipped Up – which simply has a zip all the way round to make changing it to so much easier. They would make excellent present. http://www.allzippedup.co.uk/
7) Learn and Believe. This would be my number one. I am so, so grateful to the people that take the time to google my conditions, and read about them. I’m very grateful to those that can even just give an approximation of what I actually have, as it’s more than 99% of my people around me can do. I really appreciate it, and it means a lot to me. It shows they care.
8) Make a Meal. Wow, yes. Again this is something so incredibly appreciated. Cooking can be one of the hardest things to do – a mixture of standing, repetitive moments and carrying heavy items. Chopping, peeling and slicing can be a nightmare. I would have appreciated this so much at university, when by my final year I lived off microwave meals as I didn’t have the energy to make anything else. If you know someone in pain that lives near to you and are cooking something up anyway, save them a bit!
Credit to alex27
I am really struggling at the moment.
The pain is unrelenting. I did something to a tendon in my foot which was agonising, and I couldn’t walk for days. It took ages to heal, and the instant it did I pulled a muscle in my chest/shoulder. I couldn’t breathe without terrible pain, and if I moved it was crippling.
It finally healed, and my lower back started. My lower back always hurts – it hasn’t stopped since I was fifteen. This is worse, so much worse.
I am also completely, and utterly exhausted. Bone-deep fatigue. My eyes are closing against my will, and I can’t summon the energy to do anything. I’ve been going to bed around 7-8pm and sleeping through until late morning, and struggling to get out of bed.
I am currently at work, trying to cling on, too scared to take sickness as I’ve already had one sick day since I’ve been here, and three days annual leave.
Please let this day end.
Fatigue – Nakhon Sawan, Thailand (Photo credit: Wikipedia)
Karen Lee Richards has written the top then things never to say to someone with Fibromyalgia here. Her list, my thoughts. She has more at the link.
10. We all get more aches and pains as we get older.
My pain started when I was about 10, and hasn’t stopped since I was 15. I’m not old. It’s so much more than aches and pains. An old lady shivered the other day and said she felt the cold. I agreed I did too. She glared telling me to wait until I was older. Right.
9. I think I have that, too – I’m always tired.
It’s not just tiredness. It’s crippling fatigue. I’m lucky in that generally I have a lot more of the pain than the fatigue, and I do take a lot of steps to try and pace myself. The second I don’t – I’m screwed up for days. It’s bone aching exhaustion and there’s nothing you can do about it.
8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.
I am currently working three days a week. I work a day, have a day off. I’m off sick a lot, and am struggling my arse off to carry on, because I just can’t afford not to work. It doesn’t mean I’m not bad, I just feel at the moment, I don’t really have a choice.
7. My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnosis.
Utter rubbish. Sadly a lot of doctors don’t keep up with the research, and still see it as ‘I don’t what else you’ve got so I’ll say you have fibro.’ There is lots of evidence it exists. At consultant at the local hospital said I had it, but refused to officially diagnose me as it was too “American.” If by that he means they take it a bit more seriously, then sure. But the illness is real and debilitating as any other, and has no nationality.
6. If you got more sleep, you’d feel better.
I do sleep. I can sleep up to 16 hours sometimes, but other times struggle to sleep four. But no matter how many hours I wake up exhausted, because people with Fibromyalgia do not reach the ‘deep sleep’ stage, the restorative and healing stage. So the problem is our sleep has no quality to it, it doesn’t really matter how much you get.
5. I read about this new product that cures fibromyalgia.
Yeah? How much does it cost? It’s amazing how many new products come out that totally cure x y and x, but whoops, it costs £1000+. I’ve heard so, so many therapists tell me they can cure me and then not make the slightest bit of difference. If a product genuinely works, I find most people want it to reach as many people as possible at a cost they can afford. Generally.
4. At least it’s not fatal.
But it has changed my life. It took away my ability to walk, to fully enjoy socialising, to work how I wish. Sometimes during my worst days I do wish it was fatal because it’s hard not to when you’re constantly exhausted and in agonising pain. I believe conditions like this should be taken just as seriously as fatal ones, because they truly impact every facet of your life and if it was taken seriously hopefully more resources could be put into research.
2. But you don’t look sick.
That’s because you don’t see me when I wake up almost screaming in pain because some joint is out of place. You can’t see pain visually, but you can if you pay attention.
1. It’s all in your head.
Yeah, something probably has gone wrong in our head like our brain is recognising pain signals far too much, but it’s totally and utterly real.
Common signs and symptoms of fibromyalgia.(Photo credit: Wikipedia)
I detailed my first experience claiming Disability Allowance in a previous post. The second occasion was a year or so later, now with higher care needs, and needing to use a wheelchair and walking stick. This time I received a response saying I needed a medical within a couple of days of sending off the forms – before they could have even read them. I was told a doctor would come to my house.
The doctor seemed fine at first. He asked about my daily life, and what was wrong with me. I had made notes beforehand so I remembered to cover as much as possible. However, he made it pretty obvious he didn’t believe in my condition without actually saying so directly, and snapped at me numerous times when I forgot what I was saying (part of my condition.) His ‘examination’ was dubious. It was literally the following: listening to my chest, poking me twice in the spine, and asking me to walk two steps with my walking stick.
I received a letter saying I’d been turned down not long after. I appealed and the process meant they first reconsidered it automatically. I immediately requested the doctor’s report before they reconsidered so I could see what evidence they were basing their decision on, which I felt was fair enough. I was told this process usually took some time, and I’d have enough time to respond to the report and submit new evidence in addition. Instead I was shocked to get a letter shortly afterwards saying they’d turned me down at the reconsideration stage without me seeing the evidence or having a chance to respond.
It wasn’t until shortly before the tribunal I received a copy of his report, and was horrified. He’d watched every little thing, and instead of asking why I did something, he put it in the report and twisted it. For example I at one point for a minute or so I sat cross-legged because I’m hypermobile, and sitting straight on hurts my legs. I regularly change position to stretch out my back, and legs. He instead wrote that I sat in the ‘lotus position’ throughout with no problems.
One symptom of my condition causes extreme sensitivity, sometimes to sensations that shouldn’t be painful. This is called Allodynia when a normally innocuous stimulation causes pain. I particularly struggle with clothing, and so most of the time I wear loose fitting clothing. On the day on the medical I was wearing a baggy top, and loose pyjama bottoms. They were coloured, as PJs often are. I wasn’t making a fashion statement, but everything else was too painful. I had detailed the struggles I have had in relation to mental health and living in pain to him. However on the page he should have detailed all this on, he instead simply wrote that I wore ‘bright coloured clothes’ so couldn’t be depressed.
He also wrote that I had nothing wrong with me. I could walk fine with no problem and could walk 600 metres. I had no joint problems and no care needs. He wrote my memory was fine, and failed to mention the notes in front of me I was using to jog my memory. I couldn’t believe it.
Again, it went to tribunal and a lady from Welfare Rights at the Council said she would represent me which was a great relief as I’d found the previous tribunal awful and very stressful, which made my condition worse alone. But she informed me she was going into hospital and wouldn’t be able to attend with me during July. I phoned them up straight away and informed them of this. I was told it was fine, they’d made a note on the system and I wouldn’t be given a date during that month.
Surprise, surprise I then got a letter with my tribunal date set for July! I phoned them up again thinking they’d say no problem, and send me another date but instead I was told I didn’t follow the correct procedure. My representative should have written to them to introduce herself, and inform them of these dates. I protested that I’d spoken to the tribunal service and not been told any of this, but that it had been noted. I was told that person had been wrong.
My only chance now was to appeal against the date in writing to the judge. When I informed the representative of the outcome she was very suprised, despite having been in her job for years. So I wrote my letter to the judge, explaining what had happened, and that due to my condition I’d find it tiring, painful and stressful to represent myself, and there was no one else. I heard nothing, so I phoned them up a couple of days before the date and was told my appeal had been refused, but no reason had been given and I had no choice but to struggle on alone.
Once again it was a panel of three, but this time a representative from the Department of Work and Pensions was there in addition. I was pretty worried – thinking he was going question me too, but he was fine. He asked one question about how far I could walk, and otherwise remained silent.
The judge this time seemed motherly and nice. She said my mum could talk freely and not to worry. She asked if I had any comments about the GPs report. I had put together a massive submission arguing with every point the decision maker had made, and then every point the GP had made. I went through it and pointed out every single error. At one point the Disability Specialist rolled her eyes and laughed openly at me as I spoke in a derisive. They didn’t seem to be listening.
Next the GP then started his questions and went over my conditions, asking how things affected me. At one point he asked how my memory affects me, which is a bit of a sore point with me. I burst into tears. He asked if I needed a break, but I was a total wreck. I hadn’t slept, I’d been throwing up and shaking like a leaf. I was wound up tight, ready to snap. I just wanted to get it over and done with and so I pressed on. He asked how I worked. I explained I was doing seven hours a week, I could work from home if I needed to, and I had equipment in the office to assist.
The Disability Specialist came in, going over every detail of my day. Again, I found pure ignorance. Why don’t you get a commode to save struggling downstairs at night, she said? I tried to explain there was no space upstairs for one. I live in a tiny Victorian terrace. There isn’t even a landing, and the room fits a bed, and not much else. But even if I did have one, I would need help to get out of bed, and to empty it – which is still a care need, but she wouldn’t listen. She kept suggesting things, without giving me time to explain why it wouldn’t work for me. She obviously found ‘easy’ solutions to my troubles, and didn’t give a crap they were unworkable.
How can you drive if you have bad wrists? I found resting my arms on my legs, and gripping the wheel at the bottom more comfortable, and I only ever drive very short distances and stop often. How can you work? With a lot of help, adjustments and patience. They fired questions at me, then asked them again slightly differently, as if they were trying to catch me out.
What do you do in your spare time? I paused here. I had been warned about this question. Say you watch TV and they will say your memory and concentration in fine, and that you can sit without moving for hours, even if it’s not true. Say you do anything that requires moving, and you’re doomed. I felt each question was a trap, as they weren’t going to take into account the reality of the situation.
So I said I didn’t do much at all, but I read sometimes. She asked what was the last book you read? I couldn’t remember, but then I said I thought it was a crime novel. And then added a truthful statement – “actually, it was kind of funny – I got to the end when they revealed the killer, and I couldn’t remember who it was, so I had to go back to the beginning and find out.” They all laughed, oh dear, she said.
The judge started asking about my mobility. Can you walk over there? She pointed to the other end of the car park. I’d already stated at this point I could walk about two minutes with difficulty, so I said if I can do it in two minutes and it’s all flat, otherwise no.
The GP: How did you get in the building? I parked and came in. His eyes lit up – so you walked up the flight of stairs? Nope, I parked round the park in the disabled parking, and used the lift.
I don’t remember much more, but I came out feeling like I’d been through the wars, but that I’d put my case forward. Yes I had care needs, and no I couldn’t walk without severe discomfort.
Instead of allowing me to wait for the decision, they said they’d put in the post and it would be with me on the Tuesday morning. The Tribunal was on the Monday. I pretty much collapsed and spent the rest of the day in bed in agony, and the Tuesday as well. I hoped it would arrive on the Tuesday.
The Wednesday was an agonising day from hell. I was at work so had no way of getting to the post until evening. I prayed it had arrived. I was hopeful though – I’d been truthful, and answered every question explaining the difficulties I have.
I remember walking in after rushing home from work, to find mum had got home before me and opened it. She stood with tears in her eyes and her face the only answer I needed. They’d turned me down.
Credit to: Michel Meynsbrughen
This time I wrote to the judge to ask her reasons. It’s the worst thing, the tribunal just say no – but they don’t actually tell you why. There is no set time the judge has to respond to requests, so it took about four months for it to arrive.
It began by laying out everything I said – she needs this, this and this help. She has this condition. Then it got to the reasons – she seemed to exaggerate everything she said, and we believe her mobility is fine; her mum only cares for her out of love, not need; she said she could read a crime novel, so her memory is fine; she got through the tribunal questions without a break, so her concentration/stamina is fine.
It pretty much led to a mini-break down. I couldn’t face a system that called you a liar, and didn’t offer any reasons why and twisted the truth. I was exhausted. Mentally and physically.
I was turned down about a year ago now, and I am only just making my third claim. I now have numerous consultants letters – fantastic ones that detail my condition, how it affects me, the fact I can’t cook a meal and why, that I’m in a wheelchair.
I had help someone who has Fibromyalgia, and spends a lot of time helping people with claim forms. She put my needs into the ‘right’ words. She has the knack of covering a variety of topics succinctly, without going on like I do. I sent the form in, and two days later I had a phone call to say I needed a medical.
I phoned the Department of Work and Pensions up and asked why, with my seven letters, all from top London professors, did they need more information? Oh, I don’t know, she said, it’s up to the decision maker. Can I speak to the decision maker? No. I then asked her a trick question: Will they be looking at my previous claims? Yes, they’ll do that, she said.
BUT THEY ARE NOT SUPPOSED TO!!!!!!!!!! Each claim is supposed to be a fresh one. I have more than one new diagnosis, new medical evidence. They have no reason what-so-ever for opening up the old claim forms, but there is no way in hell they have even opened my new claim form, the phone call came so quickly. So clearly I was flagged up straight away, and I’m being shipped to a GP with no specialism in what’s a complicated set of conditions.
Anyway, the company behind the medical is called Atos, who have a terrible reputation. I phoned them up to make the appointment, and they asked if I could go to the medical centre in town. I said as long as it’s got parking outside, it’s no problem.
She then asked if I was in a wheelchair, and I said yes. She then said oh well you can’t go to the centre, if you’re in a wheelchair or can’t walk unaided, we don’t allow people there for health and safety reasons.
So to make this clear – the building they use in Colchester to assess disabled people, either for Employment and Support Allowance (for those that can’t work) or Disability Living Allowance – is inaccessible for disabled people. It’s like banging your head against a brick wall.
I will keep you updated to how my claim goes. I’m trying to be positive, but drove past the tribunal building today, and I have this horrible feeling I’ll be seeing it soon.
For me, work is one of the most important areas to be running smoothly in my life. It costs me an enormous amount to work, but not in money – I pay in pain, energy levels, and stress. It means not being able to have trips out. It means if I have a family wedding I need to take not just the day off – but days surrounding it to recover. It means an extremely limited social life. And this means I want the payoff to be worth it.
I have had numerous issues in the work place over my disability which are often caused by a simple lack of understanding. Sometimes a lack of understanding of my illness, and sometimes quite simply of the law.
My first job was while I was at Sixth Form College, and it was at DFS, a sofa company. The job involved filling out the finance forms for customers after they had purchased a sofa and assisting customers by answering questions about the stock.
My back constantly hurt, and standing was the biggest culprit for causing even more pain. I took the job on the understanding that we were able to sit down when we weren’t serving a customer. Unfortunately, the manager had other ideas, and demanded we continually keep walking in circles around the store – even when there wasn’t a customer in sight. I have to describe the act of walking around with pain shooting across my back and down my legs, while surrounded by comfortable sofas, as something akin to torture. I was desperate for customers to come in, so I could snatch a few blissful moments on a sofa while I took their details.
I had absolutely no idea of my rights, and had never heard of the Disability Discrimination Act (now the Equality Act 2010). Not to mention I would never have dreamed of calling myself disabled at that age. I worried if I complained or was caught sitting down, I’d be fired. One day I was phoned to say they didn’t need any casual staff any more, but when I contacted the other staff – found I was the only one who had got this message. I assume in the end, the manager got fed up with me hobbling around, regularly collapsing into seat when I was unable to bare it any longer. Not that I could prove it.
My second job was at a tourist information office. It was fast paced, and my fellow colleagues were sympathetic, and took on the physical jobs, while I in return did more computer based work. But yet again I ran into trouble with my manager. I had told her about my pain condition, and learning from my previous mistake, had carefully detailed what I could and couldn’t do upfront in the interview and was thrilled to still get the job. Yet she couldn’t grasp why it was difficult for me to do certain jobs, and seemed to take an attitude I was just being lazy. She would purposefully pick me out to do physical jobs, while everyone seemed to look the other way.
After university, I was unemployed for some months. While the JobCentre agreed I could only work up to four days, with no standing, or heavy lifting, they began to get difficult about it. They sent me jobs for things I couldn’t do saying I had to apply for it, even if I physically couldn’t do it. One of the jobs was sorting Christmas mail at Royal Mail, another clearing a shop floor. I was told I had no choice but to apply, or I’d be sanctioned.
Job Centre Plus (Photo credit: Wikipedia)
I’d been sending out application after application with no response. I had even made an appointment with the Disability Adviser, hoping for some tailored advice, but instead just said “just continue with what you’re doing.” Some employers I applied for operated the Two Ticks scheme, which works around the basis that if someone ticks
they are disabled and they meet the essential job criteria – they have to offer them an interview, although having applied for a number of these jobs and not heard anything back at all, I’m not sure how it works in practice.
I do think this is a great idea however. I don’t believe it gives people with a disabilities an advantage, as some feel. Instead it’s the combat the very common attitude of employers dismissing disabled people right away – feeling they’ll be off sick a lot, or will be nothing but trouble. The scheme does not guarantee you a job, but allows one small barrier to be broken down and give the employer the opportunity to meet the applicant, and see their skills and work ethic before deciding whether to dismiss them or not. The Depressed Moose details some more issues with the Two Ticks Scheme here.
It’s also a very difficult decision whether to tick it or not. I applied for a job covering a maternity leave at a university and got an interview. In the interview I was asked whether or not I needed any adjustments, and I explained the restrictions. I was then offered the job, but in the conversation the head of the department asked what my disability was. I can’t remember what I said (I didn’t have the diagnosis then), but fatigue must have been mentioned, as her tone changed as she asked if I had “one of those chronic fatigue type things”. I said no, but fatigue comes into it. She then practically withdrew the job offer, saying she was worried I couldn’t do the job, and they had no time to find anyone else if I took it and then quit. I said I could do it, and she ended the phone call saying she needed to think about it.
What she did was very wrong. First of all she had no right to ask me what my disability was – other than as she had done before in regards to adjustments. She also had no right to withdraw the job offer purely based on my disability.
She rang back the next day and said the job offer was conditional on me seeing their occupational health, which was fair enough. I was cleared. It turned out her husband was severely disabled, and she was very understanding with me and was a good manager. But she could have faced legal action on the basis of her reaction. My line manager then went on to say I picked the job up quicker than anyone she’d ever seen, and was always commenting on how efficient I was, which they wouldn’t have seen if they’d chosen to allow a symptom of fatigue to cloud their decision.
Some parts of the job not mentioned in the job description got more difficult for me. It was advertised as an office job, but it actually involved a lot of physical activity. Most of the people in the office were understanding, and some took on a few minor tasks I couldn’t do. One junior manager took umbrage at this, and made the atmosphere unpleasant to the point of him ending up being disciplined for his behaviour towards me. The same junior manager also extremely offended someone visiting an office by declaring dyslexia didn’t exist, and people were simply lazy. It turned out the visitor had dyslexia and got very upset and explained that it was nothing to do with laziness, but processes in the brain, not that the manager took any notice.
Finally, I found an understanding manager in my third job, who is sadly leaving today and the charity I work for is being taken over by another one. My manager had previously lived with chronic pain herself, she understood sick leave, being able to only work on certain days and made allowances for me to work from home. This has led to some minor grumblings within the team, and the idea I was getting special treatment.
What I try and explain to people is that some people need additional help in order to be equal with everyone else. When someone is at a disadvantage, providing additional support isn’t favourable treatment, it’s helping them to reach the same level as everyone else.
Sadly, not everyone sees it that way.
It’s incredibly difficult to find an employer that will take people on with my multitudes of health problems. One bright side is that the Equality Act 2010 has given additional rights to disabled people that may help in some ways, such as not being able to carry out pre-employment medical questionnaires, or ask about a disability up front. Yet employers continue to do it. It’s also difficult to hide visible disabilities, like going into an interview with a walking stick.
The difficulties I have had make me worry even more for all the people being taken off Incapacity Benefit and assessed for Employment and Support Allowance, but instead being declared fit to work. Some even find themselves turned away at the JobCentre, as they’re declared not fit for work!
All I can suggest is keeping an eye on your rights, and fighting for them when you can.