Health Fibromyalgia

[fairdinkum]

Recently I have noticed that a number of older women I have met (friends' mums, colleagues, etc) have been diagnosed with fibromyalgia.

Upon doing some research, I have learned that there is some controversy surrounding the condition.

Has anybody out there had some first-hand experience with fibromyalgia? Has anybody here themselves been diagnosed with the condition, or have close family members or friends diagnosed with it?

Are there any physicians or budding young med students out there able to shed some light on this topic for us?

Over to you, my bigfooty brethren.

 

[woopedazz]

I've had people in tutes offer Fibromyalgia up as a differential diagnosis and initially it drove me nuts. The controversy section sums it up nicely:

"He considers fibromyalgia a physical response to stress, depression, and economic and social anxiety, and believes the associated symptoms are a normal part of everyday life. In 2009, he wrote, "the tendency to respond with distress to physical and mental stressors is part of the human condition." Wolfe notes that, "opponents of the fibromyalgia concept argue that, as it is a non-disease, we are legitimising patients' sickness behaviour by providing a disease label."

I couldn't have said it better myself

EDIT: I've had a friend and a few people I've run into claim to have Fibromyalgia. All had depression andwere under stress and were female. My friend went to the doctor several times in just a few months complaining of symptoms as vast as headache, cramps, nausea, diarrhoea, palpitations malaise and pain "all over" (I assume she spoke about all of them, because she was asking me what caused them when the doctor had "no idea"). She was searching for an answer to the overwhelming stress facing her that others around her didn't seem affected by. Finally she were given the diagnosis of Fibromyalgia and has clung to it ever since. Following up by getting her mum (also suffering depression) and another one of her friends with the same diagnosis. She now feels there is a reason behind her stress, but if anything the (psychosomatic) pain has worsened since the diagnosis. Perhaps because her belief that something is wrong with her has been "confirmed?" Perhaps something else.

So does this mean there is nothing wrong with her and she's making it all up? Seriously difficult to answer that... There is actually something going on (more likely in the nervous system as opposed to the connective tissue) that is leading to her suffering some level of pain.

Fibromyalgia strikes in everyday pain areas that nearly everyone feels a little sore in at some point or another. Some people have additional problems (see pathophys. section of the wiki for some good explanations) issues that can make this pain feel worse than it actually is/produce an exaggerated response/convince us we are feeling pain when we aren't. The people suffering from it really feel pain, but medically speaking there is little we can actually find that is wrong with them.

"It's all in your head" is completely true in my opinion. It should not be diagnosed as it only makes the symptoms worse. Instead treatment should focus on the underlying problems and Fibromyalgia should have it's name deleted as it brings no good. But, I'm pretty opinionated.

 

[CAS79]

"It's all in your head" is completely true in my opinion. It should not be diagnosed as it only makes the symptoms worse. Instead treatment should focus on the underlying problems and Fibromyalgia should have it's name deleted as it brings no good. But, I'm pretty opinionated.

And yet I will introduce to a senior doctor at a Melbourne hospital who doubles a fybro/CFS specilst and would give such a statement an angry response.

There are certainly cases of imaginary/over reactionary and misdiagnoses but there are some woman who are illegitimately effected by this disease.

Im no med student so wont be able to keep up with a technical debate but yes someone I know very well has been diagnosed with this condition and she's not looking for a way out of society, she'd fighting for a way to remain at work and in the social circle of her friends and community.

Yet there are days the pain gets to her on her own and she fights so hard until she collapses doing the every day things we do and cant do any more and her partner of friends have to put her to bed and asst in her day to day tasks. This is not her being lazy, the effort is genuine and the fact she cant do it can make her a mess, in her case id say it's the trigger of her depressioin, not the result.

This woman is not on welfare and has a full time job, during her worst times she's only just held onto it, but see her on weekends or after work and she's silently crying out for assistance many of the medical community scorne her for.

 

[Hipster Doofus]

I suspect people i know have it, the signs are just there

 

[Doctor Feel]

fibromyalgia just means tissue pain, pretty common I would have thought.

That said, I've been diagnosed and confirmed to have ankylosing spondylitis, which they originally thought was fibromyalgia.

 

[Messenger]

Woopedazz is on the money from my experience. Patients I see for imaging rarely have any scintigraphic or radiologic manifestation, yet work the word into our first fifteen seconds of conversation four or five times.

I don't doubt it exists as a real condition, but I think it is used as a catch all for people who feel constant pain and is therefore grossly over diagnosed. People like to have a label for their malaise and if the label is a medical condition rather than mental, all the better.

 

[aussierulesrules]

"It's all in your head" is completely true in my opinion. It should not be diagnosed as it only makes the symptoms worse. Instead treatment should focus on the underlying problems and Fibromyalgia should have it's name deleted as it brings no good. But, I'm pretty opinionated.

Having experienced a condition that many suggest is "all in your head", I'd be extremely careful suggesting "it's all in your head" to someone who believes they have the condition, because chances are the symptoms are extremely unpleasant and are very much physical and not "imagined", or "in their heads", as CAS79 suggests, in the case he knows about. Chances are they're going through a living hell. So suggesting that to someone who is genuinely suffering from those symptoms can make them feel even worse and more isolated and distressed and that there's not going to be an end to their suffering, as no-one believes them, meaning no-one will be able to help them.
If that's not your aim, please be extremely careful that you're 100% correct about it and don't just shoot your mouth off about it unless you are. You can do serious harm if you get it wrong either way. It's not something you want to guessing at, as it's far too important for that.
And it's as much a genuine medical condition as probably anything else. The symptoms are physical, not mental. Even if you think things they've done or thought have led to it, how is that different to someone who has smoked all their lives who has ended up with emphysema? Or someone who has abused alcohol and ends up with liver cancer? Or someone who has had unprotected sex and gets AIDS as a result of it? Is their emphysema or liver cancer, or AIDS "imagined" or "not a medical condition", because something they've done has directly caused it? If it's good for the goose it's good for the gander.
I do agree with your suggestion that they don't try to put a label on it, though, as it's better to just work out what they need to do to fix it, as there is no "magic bullet", in my personal experience.

 

[aussierulesrules]

And yet I will introduce to a senior doctor at a Melbourne hospital who doubles a fybro/CFS specilst and would give such a statement an angry response.

There are certainly cases of imaginary/over reactionary and misdiagnoses but there are some woman who are illegitimately effected by this disease.

Im no med student so wont be able to keep up with a technical debate but yes someone I know very well has been diagnosed with this condition and she's not looking for a way out of society, she'd fighting for a way to remain at work and in the social circle of her friends and community.

Yet there are days the pain gets to her on her own and she fights so hard until she collapses doing the every day things we do and cant do any more and her partner of friends have to put her to bed and asst in her day to day tasks. This is not her being lazy, the effort is genuine and the fact she cant do it can make her a mess, in her case id say it's the trigger of her depressioin, not the result.

This woman is not on welfare and has a full time job, during her worst times she's only just held onto it, but see her on weekends or after work and she's silently crying out for assistance many of the medical community scorne her for.

Top post.
Hope she gets the help she obviously needs (from someone who knows that what she is going through is genuine and can help her, and forget about those who ignorantly don't, as they are no help whatsoever) and really looks after herself. She has some serious stuff to deal with and probably a long road ahead, as there are no easy answers.
(Those you suggest "scorne" her really are disgraceful. I've come across some like that in the medical fraternity and they generally have massive egos and "God complexes", thinking they know it all and that if there's something that they can't find an answer for, that it must be "in your head" or "imagined", because there's no way there could be anything that they don't understand, or have an answer to. There are. And even if they believe it is a mental issue, they ought to be far more sympathetic and kind towards them. Would they go down to a mental hospital, or to a therapist office and speak like that to those there with mental issues? I certainly hope not, although it wouldn't surprise me, as some of them really are shocking and have terrible personal skills. They ought to be avoided like the plague in situations like this, as they will most likely do far more harm than good.)

 

[woopedazz]

And yet I will introduce to a senior doctor at a Melbourne hospital who doubles a fybro/CFS specilst and would give such a statement an angry response.

There are certainly cases of imaginary/over reactionary and misdiagnoses but there are some woman who are illegitimately effected by this disease.

Im no med student so wont be able to keep up with a technical debate but yes someone I know very well has been diagnosed with this condition and she's not looking for a way out of society, she'd fighting for a way to remain at work and in the social circle of her friends and community.

Yet there are days the pain gets to her on her own and she fights so hard until she collapses doing the every day things we do and cant do any more and her partner of friends have to put her to bed and asst in her day to day tasks. This is not her being lazy, the effort is genuine and the fact she cant do it can make her a mess, in her case id say it's the trigger of her depressioin, not the result.

This woman is not on welfare and has a full time job, during her worst times she's only just held onto it, but see her on weekends or after work and she's silently crying out for assistance many of the medical community scorne her for.

Yeah, I'm seriously opinionated. My last line was a little much. Obviously I would never, ever suggest to someone it was all in their head. That's ludicrous and callous. However, I believe every other possible diagnosis should be eliminated first; including the perfectly acceptable diagnosis of Fibromyalgia where actual signs are present. If there are literally no signs at all for anything then I would believe it was psychosomatic pain and treat accordingly.

So to restate it less broadly: I believe connective tissue disease exists 100%. In cases where a psychological aspect of the "disease" occurs first and signs are not present I would seriously consider it to be a manifestation of said psychological condition and not Fibromyalgia.

At risk of putting my foot in it again. The risk/associated factors of Fibromyalgia are strongly related to those of Histrionic Personality Disorder. Munchausen Syndrome is a massive problem with people with this disorder, and that is why I would never, ever suggest it to be a possible diagnosis until tests were a long way down the line.

fibromyalgia just means tissue pain, pretty common I would have thought.

That said, I've been diagnosed and confirmed to have ankylosing spondylitis, which they originally thought was fibromyalgia.

Mum has had Ank. Spond. since early childhood. I understand it must be very hard for you Blissid and best of luck dealing with it.

 

[BarneyBent]

I have a friend who has been diagnosed with fibromyalgia. I can certainly tell you that it's not a result of depression. She actually suffers from a rare autoimmune disease (Kikuchi disease), and doctors think the two might be associated. All I know is that she gets ridiculously bad pain in her knees, wrists and elbows.

A friend of mine's mother also apparently suffers from it. I'm not too sure of the details, but from memory she struggles to bend over and pick things up. She's not old either, about 50. She finds it quite debilitating.

With that said, there's no doubt a lot of people latch onto the label. It can be minor, with few, if any, detectable signs. Like ADD can be used by parents to justify their child's behaviour, Asperger's can be used to explain why a child is just socially inept/shy, chronic pain can be used to feed a prescription painkiller addiction, fibromyalgia is a real condition, but almost certainly overdiagnosed.

 

[Big Jono]

My fiance was diagnosed with fibro early last year, shes 28. I am a bit offended at the suggestion it is all in her head.

She gets debilitating pain in all her joints and limbs with no rhyme or reason (aside from it happens more when the weather changes quickly or goes to extremes) and it could come and go for the rest of her life.

When she has it she is miserable as she cant do anything apart from lie down and try to take her mind off it, she has stopped taking the medically prescribed drugs for it as their effectiveness was waning and the side effects were pretty poor. Now im currently trying to get her to go to a naturopath to find some long term natural management strategies for it.

Has anyone else gone down this path? Any results, good or bad?

 

[BarneyBent]

My fiance was diagnosed with fibro early last year, shes 28. I am a bit offended at the suggestion it is all in her head.

She gets debilitating pain in all her joints and limbs with no rhyme or reason (aside from it happens more when the weather changes quickly or goes to extremes) and it could come and go for the rest of her life.

When she has it she is miserable as she cant do anything apart from lie down and try to take her mind off it, she has stopped taking the medically prescribed drugs for it as their effectiveness was waning and the side effects were pretty poor. Now im currently trying to get her to go to a naturopath to find some long term natural management strategies for it.

Has anyone else gone down this path? Any results, good or bad?

The friend I mentioned in the above post has seen a naturopath. She says it helps, but I've seen absolutely no benefit. She still gets pain, and it is just as bad. Which isn't surprising, really. Naturopathy is a crock of shit, not that I'd ever put it so bluntly to her.

 

[Big Jono]

The friend I mentioned in the above post has seen a naturopath. She says it helps, but I've seen absolutely no benefit. She still gets pain, and it is just as bad. Which isn't surprising, really. Naturopathy is a crock of shit, not that I'd ever put it so bluntly to her.

So what did she try that didnt work? If you dont mind me asking.

 

[BarneyBent]

So what did she try that didnt work? If you dont mind me asking.

Can't quite remember all of it, but acupuncture was definitely one, and I think some solution with silver in it. A couple of other things as well. Oh, also some kind of massage.

 

[External Inputs]

I've suffered from what I now call "chronic fatigue like symptoms' for a very long time, going on 8 years now. I've had the term Fibromyalgia used, but, I think it's become a handy, catch all phrase for anyone who has long term chronic fatigue issues.

The sad fact is, there just isn't nearly enough know about these sorts of problems, something that's become pretty obvious to me in my long search for a cure. The old "it's all in your head" diagnosis is rather arrogant I think, especially coming from a doctor. It's as if they consider, since they must know everything, that if they can't find anything wrong with you, it must be mental. The possibility that there could be any failing in their knowledge of the problem doesn't seem to be considered.

The whole depression issue is a by product of the condition, not the cause. Anti-depressants are often used on people who suffer chronic fatigue, and can make quite a difference, although they're in no way a cure, unfortunately. They worked for me for about a year, then they stopped working, and different types I've tried since then haven't been able to effect any improvement.

I was surprised they made so much difference, but after doing some research, the dose I was on would only have worked on my serotonin levels, and, one of the better doctors I've seen (who at least admitted there just wasn't enough known about these conditions at this point), said a lot of chronic fatigue problems stem from the gut area in his experience, and low serotonin production is a gut issue.

Out of all the exhaustive testing I've done over the years, I have a very long list of what's not wrong with me. The few positive tests I've had were, intestinal permeability, hypoglycaemia and a high level of lead and mercury in my system. The metal issues, which were touted as the possible root cause for all my problems were addressed, at considerable cost in time and money, yet there was still no marked improvement. The permeability and hypoglycaemia, which seem to be linked are a constant. Nothing I've tried has made any real difference, my first test was in 2006, my last mid 2011, and the last one was the highest reading so far, despite everything I'd done to try to address the problem.

Low GI diets for the blood sugar, food exclusion diets to eliminate potential allergies, gut repair supplements and pro biotic's by the bucket load made no difference at all. Naturopaths, Chinese herbalists and acupuncture were also tried out of sheer desperation, but nothing worked.

The latest in the whole miserable saga was a new, apparently high tech stool test, of which I had two about 2 months apart. The first showed helicobacter pylori, which I'd had years before, the second to prove I'd eliminated it via antibiotics. It must have been mild as I'd had no really nauseous symptoms like I had with my first episode, and afterwards I still didn't feel better. The tests also showed positive to a parasite "taxonomy unknown", which my doctor said wasn't anything to worry about.

I did worry however, and mentioned it to a naturopath I was seeing, who gave me some anti-parasitic pills to try. This was only recently, and they made quite a difference, initially at least. I've tried a few other herbal type treatments as well over Christmas and have to say I feel better, although not 100% yet. My fingers are firmly crossed though.

The debilitating nature of these complaints really has to be experienced to be appreciated. No one can really understands what you're going through, and the impact it has on your life. Imagine getting through your day with only 20% of the energy you have now. You have to prioritise, many things fall by the wayside, and in many respects I felt like a spectator in life, all I could do is look on while others actually managed to do things, things I used to be able to do easily which had become almost impossible. If you're used to working hard, and have a pretty sharp mind, the whole fatigue and foggy, slow brain function is very hard to take. You can't help but feel pretty useless, especially when it drags on and on.

It has cost me considerably, I had to sell my business, I haven't worked for 2 1/2 years, and have watched my little empire I'd worked so hard for slowly crumble. I know it's a cliche that your health is the most important thing in life, we all take it for granted at some point, but once you've lost it, especially for a length of time, it's not just the most important thing, it becomes the only thing.

 

[aussierulesrules]

My fiance was diagnosed with fibro early last year, shes 28. I am a bit offended at the suggestion it is all in her head.

She gets debilitating pain in all her joints and limbs with no rhyme or reason (aside from it happens more when the weather changes quickly or goes to extremes) and it could come and go for the rest of her life.

When she has it she is miserable as she cant do anything apart from lie down and try to take her mind off it, she has stopped taking the medically prescribed drugs for it as their effectiveness was waning and the side effects were pretty poor. Now im currently trying to get her to go to a naturopath to find some long term natural management strategies for it.

Has anyone else gone down this path? Any results, good or bad?

I was diagnosed with CFS when I was 17 (which is pretty much considered a "twin" of fybro, I think and some display the symptoms of both, which I imagine would be ****ing horrible) and I certainly went down that path, as western medicine pretty much said they couldn't help and going to a "shrink" and trying anti-depression drugs, such as Zoloft etc, also did bugger all, as I didn't have depression.
I imagine the same ones who suggested that CFS is "all in your head" or such laughable shit are also generally the ones saying the same thing about fybro.
Again, I suggest you steer well clear of them, as they will just slow you down and take up your valuable time, money and energy, in my experience. Their attitude does not help at all, for those who are experiencing the genuine symptoms and can really add to your suffering.
My first port of call, after Western Medicine offered me pretty much nothing and I felt I had to do everything I could to get my life back, was naturopathy and while I wouldn't say it made any noticeable difference to the "CFS", the strict diet I was put on pretty much completely eradicated my asthma, that I'd had most/all of my life (haven't had it once in the 15 years since) and also the pretty bad acne and sleep problems that I'd been experiencing in the preceeding few years. It also helped to keep away the chronic catarrh that I'd had in recent years. I also didn't get a cold or flu (which I previously got regularly) or anything like that, in the next couple of years that I was on very strict, super-healthy diets for.
It didn't really help the "CFS" though, so I moved on and kept on moving on until I eventually found what worked for me and learned what I needed to learn and when I did, it was the most incredible thing I'd experienced in my life. The turnaround was pretty quick and fantastic (although it needed to be, because I was in a seriously bad way by then).
I'll go into it in more detail when I have more time and I'm more than happy to speak to anyone privately, if you want to speak to someone who's been through something like that and come out the other side, but the bottom line is that, in my experience of "CFS", there is no "magic bullet", or cure, or pill that will "fix you" (which is what I was looking for initially, as we were brought up to believe that if there was something wrong with us we'd just go to the doctor and they would give us a pill, or an operation, or whatever and that it would fix us.)
If it's like CFS, where they don't know what's causing it, or how to effectively treat it, you basically have to find out what is causing it and largely what YOU need to do to fix it, with the guidance and help of those who know what they're talking about. They're out there, you just need to find them. You pretty much have to become responsible for your own health and start really looking after yourself.
It took me two years where I pretty much dedicated all my time and energy to it, but once I found the answers I needed, it was more than worth all the hell I went through in meantime, as I knew what I leaned could set me up for life, as far as health, etc. are concerned.
In short, you have to start somewhere and don't get all caught up in the theories behind why someone thinks they will be able to help you. I did, initially and something would make sense to me and I'd get my hopes up and do it for a few months, or whatever, but a lot of the things I tried just didn't noticeably help me and it's easier to realise that that is the case if you don't get too caught up in the theories. Knowing something will work is one thing, but thinking something that won't help, will help, will not make it work, in my experience. You just have to find the things that do help and it's like putting the pieces of a jigsaw puzzle together. By the end I was willing to try pretty much anything and I didn't really care what the theories behind it were. It was basically just like, "tell what to do and lets see if it works." (Obviously it's wise to be sure that those you're dealing with are trustworthy and that's where you have to be good at trusting your gut, as it's easier for those who are up to no good to get into those sort of "industries" than into medicine).
If nothing is done about it it can last for years and years, I believe (my sister had the symptoms of both for about 10 years- she wasn't as open to trying as many things as I was and had it for much of that time before I went through it), so you really need to consider getting proactive and looking for the answers, which will probably be different for you than for anyone else.
As I said earlier in the thread, it could be a very long road ahead, or it could be a short one, but you'll only find out once you start going down it.
I wish you both all the very best.

 

[woopedazz]

I'm not a doctor, I'm just studying. I'm also incredibly blunt online and compassion is hard to express when my typing is filled with hyperbole. I probably shouldn't post more in this thread as my tongue is nearly completely bitten off and I don't wish to offend non-stop.

External, I hope your depression is relieved and you can once again enjoy your life to the fullest.

Aussierules: I don't know what to say. What is this magic cure you discovered outside of the evils of doctors who only went into medicine to make fun of you and make you ill? I'm honestly happy you are feeling better now, but I don't have a clue where you are coming from.

Finally, I don't think people understand why I said it's all in your head. I don't mean you are making it up. I mean the cause is likely an abnormality in your neurotransmitters. That does not mean you are crazy or making things up. It means you are feeling pain that has no pathophysiological cause outside of the nervous system (to simplify it to a degree where my lecturers would kill me).

 

[aussierulesrules]

I've suffered from what I now call "chronic fatigue like symptoms' for a very long time, going on 8 years now. I've had the term Fibromyalgia used, but, I think it's become a handy, catch all phrase for anyone who has long term chronic fatigue issues.

Thanks for your honest and informative post, EI, it brings back plenty of memories I don't particularly want to remember! I think I also did every single one of those tests and things you've tried, plus some others like Vitamin C injections, homeopathy (which is another thing that didn't really help the "CFS", but I did like for other things), and a bunch of others, some I don't particularly want to repeat (although Jimmy Stynes has apparently been doing one of the more unpleasant ones recently!). I even spent about 3 weeks in a hospital in Brisbane that dealt pretty much exclusively with those diagnosed with CFS, where they did test after test, including drilling into my hip, to test my bone-marrow. Fun times. I realised that was going no-where and that the fasting I was needing to do, before most of the tests, was doing more harm than good (as I had already lost mountains of weight and some of my organs were pretty much shutting down), so I got the hell out of there (despite a LOT of pressure, from pretty much everyone but Dad, to stay there), which probably saved my life. You have to do what you have to do, even if it's really hard.

Like me, are you also someone who is considered a "perfectionist"? I hear it is a very common trait amongst those who end up with it. I know I worked myself into the ground in the year or so leading up to it (pushing myself too far, "burning the candle at both ends", not eating, sleeping well, etc.) and until I worked out what it was that my body, mind and soul needed me to do, it didn't let me out of there. Once it did, I felt better than I remember having ever felt before and my mind finally became clear of the "mind fogginess" you spoke of, where you find it hard to concentrate for more than a short period at a time and struggle to comprehend things you previously could with ease (when it's at its worst and most tired).

One of the major things that helped me turn it around in the end was meditation, but not the sort of religious meditation that is so commonly used worldwide. The one I learned was a "healing mind stillness" one that Ian Gawler, of the Ian Gawler foundation teaches. I learned that from his book "You Can Conquer Cancer", which is one of the books that I referred to the most in the end. It's pretty easy to learn and can help with all sorts of things, as your body apparently heals the most when it is in a state of deep relaxation (which makes sense).
His is a really inspirational story and the relaxation meditation he teaches there did great things for me. It helped to finally quieten my mind (which usually went at a million miles an hour, thinking about all sorts of things, instead of just being in the moment and concentrating on what I was doing at the time) and it really helped things to become clear, with regard to what I needed to do and what had worked for me. The profound feeling of relaxation was also amazing! You basically got to the point that you didn't worry that you were unwell anymore.

I hope you keep your hopes up and that you realise that this doesn't have to be something that you'll live with for the rest of your life. Once you finally put all the pieces of the puzzle together, you can be rid of it and stay that way, if you keep on doing what it takes. It's your body and it wants to feel good again. Once you give it the conditions it needs, it will, in my experience. I strongly recommend you forget about all those tests that are likely to get you no-where (and that cost you piles of money, as it did for us) and start working out what it is your body, mind, etc, need you to do. What are the missing pieces of your "health puzzle"? What is your body telling you? Balance, of course, is one of the keys.

Also, another MAJOR, MAJOR key, in my experience, is to get the word "can't" out of your vocabulary. "I can't do this", "I can't do that", etc, (which is probably the "CFS mantra") needs to be given the ass, as once you start believing that you "can't" do something, you won't manage to do it. If someone says to you "why don't you go and do this or that" that you're not up to doing, I recommend that you never again say "I can't" and instead say something like "I don't have the energy for it right now". As your energy levels and fitness are so low now, what they're asking you to do may be like you asking them why don't they climb a mountain they're not fit enough to climb, or to run a marathon they're not trained for. It doesn't mean they "can't" do it, but doing it would be irresponsible, as it would leave them a wreck and that doesn't help anyone. Even if you're only able to do something a little bit, that is different from not being able to do it at all. You are no longer in the position to be able to do things the way you previously were, but that doesn't mean you can't start taking baby steps towards being able to do them that way again. If you're not doing it already, it can really help you to forget about how things were and how you wish they could get that way again and start just dealing with the fact that you are how you are now. Trying to fight the way you are now just uses up your precious remaining energy and gets you no-where. You need to accept where you are now and make sure you make the best of every day as best you can and find things that give you joy and purpose in life now. Don't just sit there dreaming of how good things will be when you feel better/free of the "CFS" and start finding things that give you the same level of joy you imagine they will, now. Even if you're only doing then in very short "bursts". You have to keep "living".

Do what you have the energy to do, don't be too hard on yourself and "take your medicine". Smell the roses. Learn your lessons. This experience will teach you something, if you let it. Start a journal if you have to. That is something else I was also doing when it all turned around. I was writing a HEAP and it critically helped me to get out of my head and see things more clearly.

In my experience, this is not something that will magically go away overnight and all of a sudden you'll be able to go out and physically do all the things you previously were, the very next day (something I initially was hoping would happen). You are probably now at a very low fitness and energy base, so you need to build it up gradually again. There's actually every chance that whatever it was that triggered the incredible physical and mental fatigue in the first place (in my case I was initially diagnosed with Glandular Fever, and I think the straw that broke the camels back was prolonged exposure to a chemical disinfectant, but my body had basically just shut-up shop, after I'd mistreated it and pushed it too hard for too long) has long gone by now, but that you're the one inadvertently keeping yourself at this low base, by pushing your body (and mind, it also needs a genuine rest) too far each day (based on what it's capable of doing now) and not letting it recover enough to release more energy for you. Or that saying "I can't do this", "I can't do that" has become a self fulfilling prophesy, not allowing you to recover. Let go (of the past- and the future- and especially of the things that aren't working or getting you anywhere). See what you can do. See what happens.

I wish you all the very best and that you find the keys that unlock your health very soon and that probably more importantly, you find peace and happiness even in amongst all that you're going through. Your life is now.

 

[aussierulesrules]

I'm not a doctor, I'm just studying. I'm also incredibly blunt online and compassion is hard to express when my typing is filled with hyperbole. I probably shouldn't post more in this thread as my tongue is nearly completely bitten off and I don't wish to offend non-stop.

External, I hope your depression is relieved and you can once again enjoy your life to the fullest.

Aussierules: I don't know what to say. What is this magic cure you discovered outside of the evils of doctors who only went into medicine to make fun of you and make you ill? I'm honestly happy you are feeling better now, but I don't have a clue where you are coming from.

Finally, I don't think people understand why I said it's all in your head. I don't mean you are making it up. I mean the cause is likely an abnormality in your neurotransmitters. That does not mean you are crazy or making things up. It means you are feeling pain that has no pathophysiological cause outside of the nervous system (to simplify it to a degree where my lecturers would kill me).

Glad to read your first paragraph, as compassion is very important when you're dealing with someone who is going through hell. These are not cadavers, or "theoretical patients", or statistics you're dealing with here. They have real feelings and souls and the last thing they need is someone who really knows little about the issue shooting their mouths off about it and stating they have "depression", when they clearly don't have it (or at least that's not the cause of their problems, or else their years of successful therapy and anti-depressant taking would have fixed it all. Unless of course you know more about depression than those those who successfully treated her for it, with no overall benefits to her overlying physical condition).
The fact there still seem to be no answers from Western Medicine about the condition, despite the fact that "national health organizations have estimated more than 1 million Americans and approximately a quarter of a million people in the UK have CFS." (Wikipedia), would suggest that the best and most experienced medical minds in the world still don't understand it (after 20+ years), so unless you know more about it than them, despite most likely having no personal experience of the condition, not having studied it specifically and being only in the studying stage in their profession), I hope you be awfully careful what you say, if you say anything at all, if you really care about those who are having serious problems.
As for your question of "What is this magic cure you discovered outside of the evils of doctors who only went into medicine to make fun of you and make you ill?" That is the sort of condescending smart-ass shit that doesn't help anyone and I'm not sure how you got all that from what I wrote. I suggest if you're going to stick around here, you reread what I wrote more carefully. I in no way bagged Western Medicine, which has many fantastic benefits, (even though they basically said they couldn't help me and were similarly little help with my chronic catarrh or asthma, which I'd seen them many times about), but I was critical of certain individuals within it, which you would have realised, if you took the time to read what I wrote carefully, before shooting your mouth off. If you seriously want to practise you need to ditch that attitude, as it doesn't help. We get it, you're somewhat smart, but that doesn't mean you have to be a "smart-ass". There are plenty of others who are smart as well, but who are also humble and realise that their brains are a gift, not something to rub in others faces.
And I never said the "evils of doctors", as I had many great experiences with some in that profession and some of them helped me considerably, even with this, eventually, but as I said, there were some I came across who were extraordinarily arrogant and full of themselves and seemed to think they know everything (despite medicine itself not having all the answers- AIDS, cancer, CFS, as some examples they don't have complete answers to) and they were terrible to deal with and little, to no help, at all. They are the ones I recommend be avoided for cases like this.
You unfortunately seem to be heading full steam ahead into that latter category, if this is anything to go by. Please ask yourself if you want to keep going that way, or whether you'll be one of the wise ones that realise that Western Medicine doesn't have all the answers to all things health yet and that if you actually keep your mind open, you can learn from other places and sources as well, to be of more help to those you will be treating. There are some traditional "medicines" like Traditional Chinese Medicine and Indian Ayurveda, for example, that have been successfully practised for thousands of years (compared to Western Medicine, which has only been around for a couple of hundred), who also have a lot to offer, in my experience with them. It was those sort of practises on how to actually become healthy (as opposed to Western Medicine, where they pretty much only help you if you're sick/injured, etc. and don't necessarily have the best answers on how to stay that way) that helped me the most (after Western Medicine basically said there was nothing they (Western Medicine) could do to help me.) You can even learn something here, from those who have actually experienced it, if you really want to learn something.
And I don't believe any necessarily get into medicine to "make fun of us" (and who the **** said anything about "making us ill"?) but you really have to question the motives of a few in the profession, as they seem to be in it just to prove how "great" they are, or how "superior" they are, or to show off, or get chicks, or the fancy car and house, or whatever. I mean do you seriously think all those going into medical school at 18 or 19 or 20 are "saints" who only have the best interests of others at heart, when they choose medicine and are doing it purely for others and not for what they can get out of it themselves? Some of them can treat you like a statistic and an inconvenience and spoil it for the rest, who really do seem to care about those they are treating.
As for the "magic cure", if you read what I wrote carefully, instead of just wanting to be smart, there is no "magic cure" in my experience. There were just pieces of the puzzle that I found along the way and when I put them all together the transformation was incredible.
If you genuinely want to learn something about a terrible condition that takes your life away (sometimes for many years), that many have little idea how to deal with, then maybe this will be a good time for you to ditch the attitude, zip the lip, open the mind and pay attention, especially if you're going to be responding to posts that you've "read".

 

[prankmonkey]

those with FM have increased level of substance P, which from research we know is high in all chronic pain sufferers.

 

[woopedazz]

Something about asthma being untreatable if you don't drink your own urine and stuff about not hating all doctors before explaining why I hate all doctors

They said they had depression you deranged loon.

I'm so upset my alter ego anonymous website-manner is a little hard for you to swallow. I think I was thrown off when I forgot this is a legitimate health resource and not the General Discussion Forum on a sport website.

 

[Messenger]

I did note that Aussierules ignored a fairly reasonable explanation for CFS in your last paragraph.

 

[aussierulesrules]

Did you also "note" how he twisted all I said and quoted me as having said things that I never said at all? And when I challenged him on those things that he then sunk to an all new low, getting abusive? Or is that OK? Like his last "quote" of mine that I certainly didn't say.
Or should we not take a serious discussion seriously just because it's on a "sports forum"? If he doesn't want to get involved in a serious discussion, he doesn't have to. There are probably hundreds of other threads he could go and get involved in.
But for someone that is reaching out for help, it might be their best option, especially if they can find someone who has been through the same sort of thing they're going through, if not exactly what they're going through. If this was something that the medical fraternity understood well and had treatments for, then there would be no problem, they would have been fixed years ago, as they've all been there and tried to get help from them, but when they're unable to help, they have to look elsewhere. If they can get some help here, who cares? Surely if they can get help anywhere that is a good thing? Or would you rather they just keep on suffering, so that someone like him can keep shooting his mouth off on any forum he likes?
If he doesn't want to take a discussion seriously, there are surely other threads he could go to that are more appropriate to take the piss and so on, than a topic like this. Or maybe he thinks going through hell for 8 years is nothing to take seriously. Wow that is so much fun. Classy.

 

[woopedazz]

Did you also "note" how he twisted all I said and quoted me as having said things that I never said at all? And when I challenged him on those things that he then sunk to an all new low? Or is that OK? Like his last "quote" of mine that I certainly didn't say.
Or should we not take a serious discussion seriously just because it's on a "sports forum"? For someone that is reaching out for help, it might be their best option, especially if they can find someone who has been through the same sort of thing they're going through.
If he doesn't want to take a discussion seriously, there are surely other threads they could go to that are more appropriate to take the piss and so on than a topic like this. Or maybe he thinks going through hell for 8 years is nothing to take seriously. Wow that is so much fun. Classy.

You are not reaching out for help. I'd be less confrontational if you were.

 

[aussierulesrules]

No shit Sherlock. I wasn't suggesting I was reaching out for help, I was suggesting that others that are currently going through this, or who know someone who is, are reaching out for help, or clearly need help, especially since Western medicine has been unable to help them (which is OK, as no-one is expecting it to have all the answers yet). Unless you think that someone who has been going through hell for say 8 years doesn't need any help? Or that they should just wait around for however many years it takes for WM to find the answers, without looking for viable alternatives or solutions that could help them now? Or without looking for advice from someone who has actually been through the same sort of thing and come out the other side even better for the experience?
And if you want to be "confrontational", how about actually challenging me point by point on any points of mine you don't agree with, instead of just making things up and shit stirring? Or do you seriously not believe that someone who has been through this sort of thing and actually come out the other side better for it has nothing to offer those who are going through it now?
As I said, if you don't want to be involved in an important discussion (and I'm sure it's important to those who have spilled their guts on here, whose posts seem to have dried up since you started derailing the thread), just because it's on a "sports forum", you don't have to be on this thread (that you suggested you weren't going to commenting on anymore).