It has been over 4 months since my initial diagnosis and I have yet to update the journey via blog. I think the reason why is because I had avoided seeping any of my negative energy into the cyber-world and there was ever so much of it. I much prefer to get to the other side of things and offer hope than share the feelings of hopelessness right in the thick of things. I think if I do just release all that negative out there, then the people out there searching for something to cling to feel more like drowning. I would much rather wait and offer something of hope and substance – a floatation device rather than an extra clump of concrete.
I haven’t re-read my initial blog before posting this as I wanted this to stand alone. Just in case anyone is reading this one first. So a quick run down; I felt like crap all the time, I was FREEZING (wearing my ski clothes inside the house freezing), lots of headaches, and aches and pains throughout my body. I was exhausted, and I was sick and tired of being sick and tired. No matter what I did I couldn’t shake this feeling. It felt very similar to when you’re coming down with the flu, like you’ve been hit by a truck, but the sneezing and coughing never comes. Some days I was bed ridden, other days I would be okay until about 2pm but then I’d run out of energy. Other days I would push right through to the end, only to find out that when I pushed myself I would find the following day even harder.
Lots of doctors appointments. Blood tests, x-rays, testing for Arthritis, Ross-River Virus, all sorts of stuff that it could have been and everything comes back clear. There is nothing wrong with me. Except there is. I wasn’t depressed (I know depressed and that wasn’t it), I had the will to do things, I was motivated, except the pain and the exhaustion were really getting to me. I knew I was beginning to get depressed, but I also knew that, um, if anyone was in pain all the freaking time – it would get them down eventually! So the doctor says it’s Fibromyalgia. She’s had other patients, same deal, and when they’ve been treated for Fibromyalgia there was positive change. Given Fibromyalgia is a little like IBS (well it’s not anything else, it’s got to be this), I wanted a second opinion. So I went to another doctor and went through the process again. Fibromyalgia.
I think I would have been suffering for about four years prior to the official diagnosis and slowly getting worse.
This is where I think it’s really important to pay attention. If you’ve been diagnosed with Fibromyalgia, listen up.
GPs don’t actually know a great deal about this. In fact, not many people do at all. It’s fairly new. It’s a mystery illness. There are ideas about how one gets it, there are links between personality types, between IBS and Fibro, and between depression and anxiety and Fibro. But no one really understands it in a fact based, biological fashion and that is where doctors come unstuck. If your vitamin levels and bloods appear fine (mine were all in the ‘normal’ category), then they don’t look at that. They assume this is just something you’re stuck with and treat it as a ‘treat the symptoms’ case – make you as comfortable as possible while you battle with this for the rest of your life.
I don’t believe in this approach. In fact I think the ‘treat the symptoms’ approach, especially by just ‘managing the pain’, is not only a poor approach, but one that is potentially life threatening. If you only treat the pain, then I believe, it’s going to get worse. You may have some initial relief, but you aren’t getting to the root of the problem. It scares me that there are doctors willing to just treat the pain. It enrages me actually and I think it’s almost worthy of calling malpractice. I think they have a duty of care, and that if they just throw drugs at these sorts of cases then they are doing a major dis-service and robbing people of the hope of ever getting their quality of life back. That being said, they are only going with what they know and it’s just not a lot.
The consensus has been that most people don’t get better. However. I am not a 'most people'. Give me the tools, give me the instructions, give me the mountain to climb and I will climb it.
Give me drugs to just ease the pain and I will probably crawl into a hole and die slowly. Sadder every day that it has come to this. I know there are people in that space and my heart weeps for them.
In cases like Cancer, and diseases that are degenerative and life-threatening you may get some proper treatment. Not that I'd wish that on anyone - I just mean in those cases the medical system takes it seriously (as they should) and treatment can be effective. In cases like Fibro, most of the time they’ll give you some drugs and simply that it works at relieving some of the pain. In my case, I was prescribed with a low dose anti-depressant as my first port of call. Thanks for that. I spent three weeks in zombie land and it didn’t really effect the pain. I couldn’t function. My brain wouldn’t work. I personally will not trade cognitive function for pain relief. I like my brain. I use it for all sorts of things; reading, writing, communicating … to not be able to do those things just to take the edge off? Give me the edge. I need my brain.
I know, I’m beginning to rant. But the scary thing is, that once you’ve been prescribed something, often you think that that is the answer, and because the ‘answer’ is the very thing that is clouding your brain, it becomes very difficult to know when to say, “Actually doctor, this sucks”. Your confidence in your own ability to make decisions is shattered, and I can see how easy it would be for people to just stay there, in zombie land, hoping one day the drugs will actually do something positive. By the time you’re at that stage you’ve usually suffered for years with this condition and you feel like clutching at anything that offers even the slightest bit of hope.
My advice is EDUCATE yourself. Read. Read the opinions of experts in this field. Don’t trust the guesses of someone just because they have the title ‘doctor’. Unless they’ve spent years with this, or really investigated (which most won’t because it’s not a life threatening illness), then they’re guessing.
Within two weeks of my diagnosis I bought two books on it. I thoroughly recommend “Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy” by Jacob Teitelbaum. I am really glad I started reading before I started on the Endep or I might not have fought back.
Basically without going into absolutely everything I’ve learned, the main things I personally suggest are get all your blood test results, all the vitamins and minerals (Don’t skip vitamin D and iron. I know they cost more now, but do it), and take them to a Naturopath that comes well recommended. The range for 'normal' is bordering ridiculous. If you have Fibromyalgia you don't want your levels 'normal', you want your levels OPTIMAL. Look up vitamin D deficiency symptoms, and they’re almost identical to Fibromyalgia. My levels were ‘normal’, but to get them up to ‘optimal’ I had to almost double the levels. There is also a magnesium and vitamin supplement available that has been developed through Metagenics called “Fibroplex” and combined with the rest of my treatment I think this has been the most helpful supplement out of all the ones I tried (including the prescribed Endep). It also didn’t steal my ability to have a functional brain while it helped relieve the pain.
The Naturopath that I used is Mim Beim. She is highly intelligent, really gets what's going on with the body, knows how to treat it and (provided you actually follow the advice and instructions to the letter), is nothing short of a miracle worker. In less than three months I’ve made a huge turn around. She’s in both the Southern Highlands and in Sydney so if you’re in either area (or willing to travel) she’s most definitely worth it. It wasn’t just her though.
If you’re going to fight Fibromyalgia, it needs to be a holistic approach. I’m convinced that if I didn’t tackle it with each area I wouldn’t have had the same success. I’d tried bits and pieces of each section and it’s not enough. In the end, I was seeing Mim the Naturopath to help boost all my levels and alleviate the pain and other symptoms, I was seeing a psychologist to help get my nervous system settled down (incredibly important – I can’t stress just how important that side of it is), I was also participating in a breathing course Mim offers called Buteyko Breathing which I can’t even begin to explain the gravity of what this offers. It changes your physiology and literally helps your body to heal. I know, that sounds close to ridiculous but it’s scientifically proven and now for me the results are all the proof I need anyways. PLUS I made incredible changes to my diet (which I know for most people is incredibly hard to do). I don’t recommend doing that without the help of a dietician or naturopath because the world of food and what is good for you is so hard to navigate and when you don’t have a professional backing you its easy to give up and fall back into bad habits. PLUS I also tackled this with exercise (I even took up yoga which has previously given me nothing but rage). So as you can see, this has been a major overhaul and not without its difficulties like nights crying when I felt so hopeless because I was doing all the right things and trying so hard and still suffering with so much pain and exhaustion. But I hung in there, I kept consistent with my diet, I took my supplements religiously (I even bought a nutribullet so I could shove everything in the one drink along with some spinach and other healthy things). I did the suggested things (all of them) and it has seriously paid off.
I am currently symptom free. My energy levels are back to almost normal for me. I need to make sure I don’t do anything stupid and burn out but if I keep balanced and consistent then my energy levels are enough to function well and have enough left over to enjoy my family and friends. My pain levels are down to 1 or 2 (out of 10), and that’s simply because I have shin splints and arthritis in my right ankle so the pain is from an actual physical injury as opposed to my receptors being over sensitive to everything. I am not cold all the time, I am not using an electric blanket at night any more (this from someone who had it on all summer and still wore ski clothes during summer). I have full cognition. My brain is working again and the little man inside my head who does the filing doesn’t just bugger off to go have coffee anymore – he’s there, doing his duty and helping me answer questions and not just stand there looking like a goldfish with its mouth open. The only time I struggle with brain fog is if I have had a really long difficult day and I’m overtired. But this is fantastic progress for me as a few months ago I was tired constantly and even stringing sentences together was hard work.
I really hope that if you’re reading this, if you have a new diagnosis or you’ve had one for years, the thing that you take from this is that IT IS POSSIBLE.
I have a bit of a theory of what happened with me but I’ll save that for another blog.
I will also spell out clearly what steps I took, but the main thing I now understand about what happened with Fibromyalgia for me is best described by thinking of a car.
If you imagine a car, and the car has been in an accident of some sort (divorce, childhood trauma, difficult life circumstance of some description, whatever that is), and you just keep driving it. If you’re running that engine high all the time and haven’t learnt how to get yourself out of the ‘fight or flight’ response, (leaving things to the last minute and then using adrenalin to motivate you, or not saying no to people until you’re losing the plot again, pretty much add any unbalanced functioning here), and then on top of that adding dirty fuel (poor diet, eating things you probably shouldn’t – for me, gluten, high sugar, caffeine etc again add anything that’s not healthy), and you’re basically running that car into the ground. For me, I think I kept pushing. I just pushed and pushed, because I am strong. Because I am a bit of a fighter and I have high expectations of myself. I think, my body gave in because I didn’t listen earlier. I kept pushing. I pushed and pushed and eventually my nervous system was shot. Pain is really the only thing I ended up listening to.
I’m sure there are exceptions. I’m sure not all of us are the same.
But if I was reading this, and I related, and someone actually got to the other side of this crap, I would take it and I would find some medical professionals willing to help me BEAT this – not just endure it for the rest of my life.
I’m sure if I went back to my old coping mechanisms, eating the same diet, and doing everything that I was doing before, then without a doubt my symptoms would reappear. But I won’t go back. I get this. I am now one of those people that used to annoy me with all their healthy eating and meditation hippy crap. But I am not in pain every single day of my life and I get to enjoy my kids.
I’m not going back.
Don’t hesitate to email me for details on who I spoke to. If you’re looking for support just make sure you aren’t surrounding yourself with people who have resigned themselves to self pity and only trying the pain management approach. You have pain for a reason. Don’t give up. Many people have already. They’re everywhere and I don’t blame them at all. That’s where I think the doctors have a lot to answer for. They’ve given a lot of people a certificate to live out their lives without hope or capacity for change. It’s heartbreaking.
I hope after reading this, you don’t become one of them.