Fibromyalgia.Is it too easy?

All your fibromyalgia experiences, questions and answers.

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Re: Fibromyalgia.Is it too easy?

Postby becbob » Fri Nov 29, 2013 3:35 pm

I have been newly diagnosed with FM and I am currently on the sick form work until the end of the year. I love my job and have always worked but I have a really physical and stressful job and I can't do it anymore. At least for the mean time. I am really struggling with it all and my Dr has recommended that I give up work and claim pip. It's taken me over a month to phone Pip. I knew I was ready physically to give up my job but I couldn't mentally do it. I love my friends and social life and I am finding it very hard to give this up, mentally.
I would do anything to be better again. I am in so much pain and tired most of the time. On the rare occasion I can get out I try to cram it all in to one day and end up making things a whole lot worse. I feel so low at the moment.
I also know 2 others the have FM and they both are very active and can do a lot more than me. I don't think they are faking it though. They have had it a lot longer than me, they have learnt how to pace themselves and also they have managed to get a good balance of meds sorted out.
I am really hoping that I am just going through a bad patch and that at some point in the future I can go back to work. I wouldn't wish this illness on anyone. It has taken away my life. I cannot plan anything, I just have to go with the flow.
Tomorrow is the one time of the year all my girlfriends meet up without the men and the kids and we go Xmas shopping. I cannot do this so this year we are going out for a meal instead. Tomorrow for me will mean all day in bed resting just so I can sit down at a table for 2 hours and have a meal with friends. I am certain that I will pay for it after but I will do it even if it kills me. If anyone was to see me out with friends laughing and having a good time then they will think I am faking it. I most certainly am not but sometimes you just have a grin and bare it. If it was an all day thing then I wouldn't go but I now have very little joy in my life that I will take what I can from life whilst I can get it.
There may be some who fake it but I couldn't understand why anyone would want to. Getting benefits isn't a great life. I will have to scrape and scrimp just to make ends meet. I had much more money working.
I am sorry you are having a bad time at the moment but I think you should concentrate on yourself. I have just about enough energy for me and my family without worrying about anyone else.
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Re: Fibromyalgia.Is it too easy?

Postby Emzie » Mon Dec 02, 2013 11:26 am

All i'd like to say is, if there are people out there pretending to have fibro to claim benefits, 'Mocking is Catching'!!!!
Watch out those people you may just get what you are pretending to have.

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Re: Fibromyalgia.Is it too easy?

Postby helen.whittaker.125 » Thu Jan 23, 2014 10:06 am

Emzie unfortunately there seems to be a lot out there who self diagnose themselves with fibro if they feel a little tired and achy once in a while, the support group here I can't go to they sit there discussing how many paracetamol they needed to take one day last week when they were bad. When I asked what other meds they were on their response was a horrified none fibro isn't an everyday illness you have good and bad days........ I'm not sure they understand how bad our good days are and I'm not sure they'd cope with our bad days!!

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Re: Fibromyalgia.Is it too easy?

Postby tabithakat64 » Tue Jan 28, 2014 3:46 pm

I was diagnosed with ME aged 18 then Fibro about 3 to 5 years ago, I think mostly because I had most of the symptoms, my rheumatoidologist (I don't know if I've spelt that right) kept referring me to a neurologist as he felt my symptoms were neurological, the first one agreed, the second one as a previous MRI of my brain had come back showing a couple of minor lessions which is apparently normal for someone in their 30's and due to me not having optic neuritis diagnosed the FM. My GP has help with meds and feels I have MS (I have a strong family history) but wouldn't refer me to a different neurologist or go against his diagnosis as the symptoms are so similar and the medication I'm on does help dramatically.

So yes, in a way I do think sometimes FM (&ME) is the easy option for medical pracitioners and people with mild aches and pains or undiagnosed medical conditions to be diagnosed with.

I do know several people with FM/ME/MS none of whom claim any form of benefits all of whom, myself included struggle to deal with every day life. Who are looked down upon by family, work and friends as if they are faking when actually we are really ill due to the media portrayal of these conditions.
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Re: Fibromyalgia.Is it too easy?

Postby silvermaneuk » Tue Jan 28, 2014 5:22 pm

I have many neuro symptoms and very similar history to yourself, although neuro Defo thinks I have something neurological going on just can't pin it down, I have lesions and they found o rings in my LP.

My personal opinion is that M.E and fibro is some benign form of MS think its very similar , think it involves the CNS more

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Re: Fibromyalgia.Is it too easy?

Postby SchroedingersCat » Tue Jan 28, 2014 9:32 pm

helen.whittaker.125 wrote:Emzie unfortunately there seems to be a lot out there who self diagnose themselves with fibro if they feel a little tired and achy once in a while, the support group here I can't go to they sit there discussing how many paracetamol they needed to take one day last week when they were bad. When I asked what other meds they were on their response was a horrified none fibro isn't an everyday illness you have good and bad days........ I'm not sure they understand how bad our good days are and I'm not sure they'd cope with our bad days!!

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Hi Helen

Just couldn't help noticing this comment of yours - not everyone with FM takes loads of meds, I was diagnosed by my GP, and had it confirmed by a neurologist and a rheumatologist and backed up by an experienced physio, but I handle it with only over the counter painkillers, mindfulness, meditation, and rest. Some of us do have it mildly enough to cope without the barrage of pills that seem to be the normal prescription for FM. Just wanted to clarify that for you. (BTW I don't claim any benefits either, I work full time.) Some of your fellow support group members might be like me, a mild case with no other illnesses.
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Re: Fibromyalgia.Is it too easy?

Postby Kyomii » Thu Jan 30, 2014 3:08 am

whoami wrote:My whole issue here is.....How do you know? What gives you the right to say, you know they are faking? Some days my symptoms are as bad as anyone with fibro and other days, You would consider me a fake.

Something that irks me is....and I heard it on another forum and left was..... I have a much more severe case! The worst ever heard of!

I do not believe anyone who is diagnosed with fibro has fibro any more or any less than the others. If you have it, you have it. Just like being diabetic, you either have it or not.

I could say on days that I can't move, am throwing up all day, have a migraine and in tears, that I am worse or have a more severe case than others. I don't , I would not insult others with fibro by saying that.

I feel that the way your symptoms are handled, your attitude, treatment etc. determines how you are affected that day. Some days we have everything under control and the next everything is all gone to h***!

I am no worse than anyone else because I am on a heavy dose of Fentanyl, and Oxycontin and that I am not able to work. The person who can get away with only needing Co-Codamol and can work 30 hours a week does not have a milder case than me. We all suffer from this illness.

If anything irritates me it is someone who says or thinks that.

I'm sorry, I am going to have to disagree. Fibro is like MS, arthritis, diabetes, any other condition, in that it does have varying degrees of severity. It is not a case that everyone experiences exactly the same level of pain/symptoms/severity at all.

I have been in a wheelchair with fibro for over 20 years, and bed bound for 10 years, others are the same, and others have much less flares/severity and don't even need a walking stick to get around (thankfully!)

When my specialist diagnosed me 20 years ago (it was his specialist field within rheumy), he said out of the hundreds of fms patients he sees, I was "one of his most severe cases" he had seen (suggesting there are others who experience it severely, and some who do not.) He then went on to explain different people have different severities of it.

Some people with MS have it mild, long periods of remission and can live a relatively normal life. Some others have a more severe form of MS, are bed bound and incontinent etc with it. Fibro is the affects people on different severity levels, so please do not assume and insult those who are genuine severe cases by suggesting everyone has it at the same level, and those who are deemed severe are merely weaker at managing their condition and have a weaker attitude - this is NOT the case at all, and attitude to the condition does not alter the severity of it - it is FACT that there are mild to severe cases, just like multiple sclerosis.

Just because I need a wheelchair, am practically bedbound does not mean I am handling it any worse or have a bad attitude to it or cannot manage my pain any less than someone who has it and is able to work 30 hours a week, or those who can regularly go out, and live relatively normally apart from a flare now and again - now implying that is offensive.

The same with diabetes, you mention this to be the same....firstly, there are two completely different types, (and type is vitally important to how it is treated - the difference in treatment can be a matter of life and death!) so that negates your point immediately, and secondly, there are different severities. My FIL had both legs amputated due to diabetes, and he isn't the only one, so if there was not different severities as you imply, no one would ever need amputation or everyone would need amputation. No one would ever need different levels of medication, treatments - to the extent of life and death, and experience different levels of pain etc if your "belief" was true.

We are all unique - stating that everyone who has fibro has it to the same degree and those who are very incapacitated with it are merely weaker at handling it than those who work with it, and it is just a question of attitude, is like stating everyone who has cancer/MS/arthritis/name of any condition all have it to the same degree. Not only is it insulting, it is scientifically impossible for any person to have any condition on the same level, experiencing the same level of pain, weakness, tiredness, flares as each other.

Some with arthritis are worse off than others because they have a more severe case, some with diabetes are worse off than others because they are a more severe case, the same is true for Fibro and ANY other condition you want to throw out there. What is true is that someone who has it severe is no more "special" than someone who does not, but each person's battle is, without doubt, different.
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Re: Fibromyalgia.Is it too easy?

Postby whoami » Thu Jan 30, 2014 12:59 pm

Kyomii, I am sorry you are offended by my post. This is just my opinion.

When I say that nobody has it any more than others is not meant to insinuate that someone in a wheelchair , need assistance or bedridden that they are lazy or have a bad attitude. It would be the same for those that are able to work.

I did not say and would never say that we all experience tbe same level of pain. In our immediate family we have a father with MS and diabetes, a mother with diabetes, a sister with spina bifida , diabetes and MS, a hubby with Diabetes, bi polar and testing for MS, a brother with diabetes and MS, Then me with illness from fibro to cancer. I know well about being diabetic and having MS.

Just as you say you are insulted with my comments, do you not think that those who are able to work, able to walk would be insulted if I suggested that they really can't be that bad. You bet they would.

My point is that in most chronic illnesses it is the ability to control the symptoms that makes the quality of life. I have had fibro for 25 years, I could not move 75% of my body for 2 years. I have not worked for 25 years. I am on a very high level of pain medication. I also have a good dose of antidepressants. I am bedridden a lot of the time, other time I am up and about.

The ability to control symptoms determines the day. Controlling them may mean meds, excercise, therapy or my attitude. When I say attitude has a lot to do with control does not mean or suggest people are lazy or have a " bad attitude". What I am saying if you are positive about things it is realistic to think you will feel a bit better.

Being Diabetic either type one or two is equally as serious to the patient. Both types are life threatening if not controlled. A family member has has amputation, goes into diabetic coma as well as is almost blind, very seriously informs those with diabetes that their condition is just as serious as his. He has not always been able to control his symptoms and therefore suffers the consequences.

I am not saying the level of someones symptoms is all their fault, we can't control fibro that well.

What I am saying is that when someone says that they have a much more severe case of anything being fibro or not can be very demeaning to those whose symptoms are under control. It would be like a Dr saying that they can't have fibro because they don't look like they have anything wrong. It is the same feeling you are having by my comment, as though I am dismissing your symptoms.

I think that fibro is a terrible thing. We all are so different, our pain tollerence, our ability to cope is why it is hard to treat. Like any chronic illness we all react in our own way. That is why I say, we all have fibro, no more no less. To each of us it is as severe as we would want it, as severe as we can handle. I am not saying anyone has it more or less, we all have it.

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