Fibromyalgia is a joke?

Disagree with the title of this blog post? I do. If you're on Facebook, please go to this page and report it:

STOP the Whining!!! Fibromyalgia is A JOKE

How to report a page on Facebook:

• Next to 'message' click the little arrow.
• Select 'report page'
• Select 'hate speech'
• Select 'targets people with a disability or disease'
• Click 'continue'
• Check 'Report to Facebook'
• Click 'continue'
• Click 'ok'

Just a sample of what the delightful individual who made the page has to offer:

Is Fibromyalgia a disease with a physical pathogen, or merely the result of depression and stress? The pain may be 'real' but the cause may be literally all in your head.

One sure way to stir up controversy is to say that Fibromyalgia or Chronic Fatigue Syndrome or some other illness that has no physical symptoms (other than reported pain) is a made-up illness. People will get incensed and say, "Our Pain is Real!"

And that may be true. But pain does not occur in your joints, your muscles, or even in your nerve endings. No, it occurs in your mind. Even if someone saws your leg off with a chainsaw, the pain doesn't occur in the leg, but in your mind, where you actually feel pain. Similarly, you do not "see" with your eyes, but rather receive light signals. It is the mind that assembles these into images that we see.

But mental illnesses have a stigma in our society. And depression is one of those illnesses where we tend to blame the victim. "Cheer up!" we say, as if it were a cure. And people are thus reluctant to seek help for depression, convinced it is too trivial a matter to bother a doctor about.

And as a result, it is not uncommon for a lot of maladies to appear in the mind - psychosomatic illnesses. And these do occur with regularity, particularly among depressed people or hysterical teens. And some folks often make hay from these things - doctors or political activists with an ax to grind.

And the sufferers from these illnesses do enjoy the attention they get, and are comforted in having an official diagnosis of their ailment. After all, just "getting too old" or "drinking too much" or "being depressed" are not as concrete a diagnosis as a mysterious disease without any physical symptoms - other than pain. The mysterious disease has a name and a cache. And if anyone calls you out on it - that it might be fake - even the Doctor who first gave it a name - you can go on the offensive and call them all sorts of nasty things. Just wait for it...3.....2.....1.... FLAME!

He is right. It's made me very angry. I do not suffer with depression, so I disagree very strongly that FM or M.E. / CFS are physical manifestations of mental illness. I have suffered from depression and anxiety for years in the past, and yes, some of those years were while I was ill. I had a breakdown in 2001. I am not ashamed in the slightest to admit any of that. It says something about the author of the page that he assumes that every single person with Fibro would be ashamed to admit they had any psychological conditions. A few of my Fibro friends do, and they're not ashamed to admit it either.

I am insensed that someone has made this page. I do not understand what they stand to gain from it. I am assuming that there must be someone in their life who has Fibro, and they are jealous of the attention that person, or those people, get. He has talked about enjoying the attention from the illness after all. Personally, I do not get any attention from the illness, so I don't really understand what he is talking about there.

This is hate speech, plain and simple, and it should be squashed.

Frustrations; Fibromyalgia has changed my life

This friend of mine has M.E. and Fibro. She struggles every day, and it's heart breaking to watch.

I can't walk without walking sticks, I can't cook a meal for myself as its too painful to stand to prepare it and the pots and pans are too heavy for me. My memory is so bad I forget who I am on a regular basis and have caused accidents on many occasions due to forgetting I had left a tap running, or food cooking. I spend a lot of time sleeping, badly, and still wake up feeling like I haven't slept in months. I have pain in every single joint in my body and am constantly exhausted.

I have Fibromyalgia and it's changed my life completely! Yet still I keep on fighting! The support of my friends and family is sometimes the only thing that keeps me fighting and I love you all for it! XXX

Iams

Ok, I know this is neither M.E. or benefit related, but I just wanted to share this with people!

I've always fed my cat Iams. It was what my vet recommended, and I never questioned it. I switched from standard Iams to their hairball formula, because my cat struggles with hair balls. Horrible big ones. It fixed the problem.

When I moved here, my cat started eating what my boyfriends cats eat. This I shall not name. I noticed after a month or so that the quality of her coat was deteriorating. I wasn't sure why at first. My boyfriend suggested that it was because she was spending more time outside. He viewed her as being an indoor cat, but she really wasn't. Before we started moving around she went out daily, spending hours outside, she didn't go far, but she did go outside; she still isn't spending that much time outside here yet.

I suddenly wondered whether it might be her diet. So I suggested that we feed all four of them purely Iams for a while and see if it makes a change. With four cats it's too difficult to feed one one thing, and the others something else. So that's what we have done.

Her coat is back to the beautiful shiny luxury I know and love to stroke. Not only that though, but his three cats are enjoying beautiful shiny coats now too. I had noticed that their fur was different to hers, and now I understand why.

If it's giving them such beautiful coats, if we're noticing how much better they look, what's it doing on the inside? I wonder if they're all feeling healthier. My cat was certainly running around like a crazy thing yesterday. Three of them were curled up with me in bed, purring, this morning.

So, I'd like to say thank you to Iams. And let everyone know that I rate them highly. Now on to my next project; seeing if adding glucosamine to their diet helps one of the little ladies walk more comfortably!

Specialist Update

Before I moved away from my lovely wonderful GP he wanted to make sure I was on the right path to being treated, to improving. He had tried referring me to a rheumatologist, but it had proved fruitless in terms of treatment for M.E.. So we sought an actual M.E. specialist, and we found a clinic about an hour away from where I was living. The Chronic Fatigue Clinic at the George Eliot hospital in Nuneaton.

I had an appointment with them in March. It upset me. The doctor I saw told me that I had been ill for so long that it was unlikely that there would be anything they could do for me. I came away feeling as if I was being blamed for not being referred to them sooner. I wasn't given any advice or treatment, so didn't think it would go any further.

However, a month or so later I was called in for an adreno-cortisol test. I was under extreme stress at the time, so the doctor conducting the test expected my results to be very strange, and that he would need to repeat the test. I received a letter through the post informing me that they were normal. I was once again disappointed. I know it is strange to hope that something is wrong, but as far as I'm concerned, if there is something wrong they can treat it, which means there are less things wrong with me that are being untreated.

I was then surprised to be called in for a second appointment with one of the doctors from the clinic. The appointment was last Friday. The letter didn't tell me why I was going, so I didn't know what to expect. My appointment was with Dr Patel.

Dr Patel, at the moment, is my hero. He disclosed to my partner and I that when I had gone in for the adreno cortisol tests they had also performed a number of blood tests. He looks at the results of these tests in conjunction with one another. For myself he found that while both my thyroid levels are within the normal range, one is high, and one is low; that in itself is not normal. It means that one thyroid hormone is not being converted properly into the other. As such he has changed my thyroid medication to try and overcome this problem. He also found that my Vitamin B12 levels are low, so he has prescribed B12 injections.

I would like to explain something here. Where I have described on M.E. groups what Dr Patel has so far done, the reaction I have mostly had is "My GP did that ages ago!" or "That's how I was diagnosed too!". I have been ill and diagnosed since 2002; he is not re-diagnosing me. The way he does these blood tests is not what our GPs do. He is not running routine bloods for a start, but also the way he looks at the results is different. Most of our GPs do not go through the results and explain them to us. He looks at how they work together. We all know that different parts of the body affect each other; similarly if one thing is wrong in the blood tests it will be affecting other things. My thyroid levels being the perfect and most simple example. He is also familiar with the fact that people with M.E. have absorption issues, which is why he prescribed Vitamin B12 injections. I am already taking multi-vitamins and minerals at the advice of my previous GP because he suspected I had low B12 and Vitamin D, but obviously I still have low Vitamin B12 despite taking 100% of the recommended daily allowance on a daily basis.

One thing the rheumatologist did do when I saw her was to prescribe me with Tramadol for pain. I have found since seeing her that it doesn't only help me with the pain, but it also takes away that extremely heavy feeling we get in our limbs, and clears my head so that I can actually think clearly. Well, since moving GP, my new doctor keeps reducing the dose of Tramadol. He doesn't like the drug, because it's addictive (and because he didn't prescribe it for me). So I asked Dr Patel if he could sort this problem out for me. He is going to; he has re-prescribed it for me at the dose the rheumatologist set, and is going to ask my current GP not to reduce it again. (I don't think this will have any affect on my GP though to be honest).

I also asked Dr Patel if I might try Gabapentin for sleep, as I've heard from a few people with M.E. that it gives a natural sleep, unlike sleeping tablets which turn us into zombies. He has indeed prescribed me with Gabapentin, and he mentioned that it is recommended for M.E..

I have come away from him very happy. I am determined to do exactly as he has said. I will be sticking to this medication regime religiously. I have absolutely no right to complain about being ill if I am not doing as the doctors who understand the illness tell me to.

Frustrations: The mother of an M.E. sufferer

When I invited people to share their frustrations about M.E. with me, one of my friends came forward to tell me that her son has M.E.. I hadn't previously known this. This is what she had to say...

ME can be inherited........! that awful realisation that you’ve passed something awful on to your child!

I’ve never actually been diagnosed with ME – I’ve suffered with most of the symptoms though since I was 19. My own doctor doesn’t like labels – and after being diagnosed (by another doctor) with Fibromyalgia ten years ago (at 34), the need to have it confirmed lessened. Friends with ME tell me I have it, and I have to say I think I probably do too, but a lot of the meds they use are the same, and the extreme exhaustion of both is very similar – so it matters less to have the ME label.

I know there’s nothing I could do to stop it, but knowing that my son (then 16 and just finishing his exams) had contracted the horrible illness that blighted my adult life and that he got it because I’d had it was very hard to deal with. Interestingly (!), his father has Fibromyalgia too..... so my poor son had no chance to avoid this pain – a lot of people suffer with both ME and Fibromyalgia.

My son is now 21, he’s been through college, a year of Uni and even parenthood whilst suffering with this horrid illness. College and Uni were hard – but they knew about his illness and gave him extra time to complete things – I had to help a lot too, especially with the written work; so most of his coursework was a joint venture – we joke that I too have a Diploma in Modern Music (or at least, the written part – I can’t play a single musical instrument!). Parenthood – well, that’s exhausting at the best of times – adding ME into the mix just adds a whole new dimension – we all help when we can.

The practical side of the illness (or at least the support of it) is straight forward – you know his energy has its limits and don’t expect too much. You do what you can to help, you make allowances and adjust.

Emotionally though it’s harder – maybe because I can truly empathise – but trying to keep him going when I’m struggling to keep my own ‘emotional’ head above water is so draining. There are certainly days when I will do everything to keep him going at a cost to my own health – not because he asks it, but because I’m his mum and that’s my job (ok, silly maybe, but it’s how I feel).

He doesn’t like people knowing he has ME – in fact it’s only his really close friends that do know. He feels that somehow he’s failed by having the illness – that they will think less of him (they don’t, I can assure you). But as his mum, that’s really hard to deal with – I’m pleased, of course, that he doesn’t use it as an excuse – but sometimes I wish he wouldn’t be so hard on himself – and would allow people to care and make allowances.

He’s my son – and I would do anything to take this terrible illness away – but we have to live with it, him and I – we don’t have a choice, do we?

Frustrations; how long have you got?

When I asked one of my friends with M.E. what her frustrations were, this was her response:

"Have you got 3 weeks to read it lol? Its the most frustrating illness I've ever come across. You can't plan, you feel like you're living on luck, you're in pain every day, getting benefits to which you should be entitled to is luck of the draw, you fight to get better which makes you feel worse, you feel useless when you can't even make a meal or string a sentence together. If you have a 'good day' (which is a term I don't like as I am rarely symptom free) its frustrating to try and not be 'normal' as you know you'll pay for it over the next few days. You worry about what people think if they see you out doing something most others take for granted like shopping as to other people you look 'normal' and don't look ill. Its difficult for people to understand how you feel...and if one more person says "Oh, I get tired too..I just....blah blah blah...you should try that" I'll possibly use some of my precious energy in punching them...if the pain in my arms allow it!!!"

500,000 to lose DLA

Those of us who have been watching the tide turn are well aware of what switching from DLA to PIP will do. Benefit reform has been brought about partly because the government has painted a picture of those on benefits as being scroungers, malingerers, people who generally don't want to make an honest living ... the lowest of the low.

Public perception is that the benefits system is being reformed because of benefit fraud. Yet, the actual statistic for Disability Living Allowance fraud most recently released was 0.5%. Old Joe Blogs is going to look at the governments statement that 500,000 will lose DLA, and believe that 500,000 people have been claiming fraudulently. As such, I'd like to do a little maths with you.

DLA fraud = 0.5%

In Joe Blogs mind, 0.5% = 500,000

In order for that to be the case, the total number of people claiming DLA would be 100,000,000.

So, dear Mr Blogs, before you jump to any conclusions, please think about the reality of more people than make up the population of the UK being able to claim DLA. The government is not just targeting benefit fraud, it is targeting people who are genuinely sick and disabled, and taking away the little amount of money they rely on.

DLA is supposed to enable people to live a life contributing to society, whether that be by working, or simply by being able to shop in their local stores instead of online. By removing so many people from DLA (or PIP) the system will crumble. People who have relied on Mobility cars will no longer be able to get to work. People who were able to go into their local high street throughout the day will no longer be able to do so ... more shops will close!

It's a small minded way of recovering a tiny amount of money, that could be so easily regained if the big mouths, further up the ladder, actually paid their taxes.