It’s been two years since I was diagnosed with fibromyalgia. It took me around two years to reach that point, which means it’s been four years in total that I have lived with this condition. I know many people view their illness as a blessing and turn it around into a positive. I don’t. I’m not one of those people.
I wish I didn’t have fibromyalgia
Don’t get me wrong, I’ve learned so much and I’ve grown a lot as a person because of everything that has happened to me. I’m postive, I’m happy and I get on with things as best I can. But the truth is, fibromyalgia is a horrible condition and I wish I didn’t have it. I don’t believe there is anyone who would feel differently.
Having said that, you don’t have a choice in the cards you are dealt and I have had to learn to adapt to a new way of life. Over the years, I have learned a lot about how to live as well as possible with fibromyalgia.
I make the most of a bad situation
The way I see it is you have two choices: wallow in your misery or do absolutely everything you possibly can to live life as well as you can despite the challenges of chronic illness. I dabbled a little in the former but I’m most definitely the type of person who is the latter. I guess you can say I am tenacious; I don’t give up easily.
It has taken a lot of experimentation and trying different things for me to realise what works for me and what doesn’t. Of course this all takes time and it’s a learning process that is ongoing– I still feel there is a part of my fibromyalgia puzzle that’s just not quite fitting right yet.
However, there are a few things that took me a while to figure out that I wish I had known right from the start. I thought it would be useful to share these in the hope that these may be helpful to someone who is in that place.
Please add your thoughts in the comments too. Let’s make this post a great resource for the newly diagnosed and for those who feel like they have lost their way a bit in treating their fibromyalgia.
1. Diet changes really do help, you just need to experiment and stick with it
Diet is always something that people are reluctant to change. I know I was! I think there was some resistance with me because I love food and I did not want to change anything else because of fibromyalgia– it had already robbed me of so much. There was also some resistance because of the fact that there are uneducated people out there who tout it as a cure. “Change your diet and you will be right as rain.” Well I’m sure you know that’s not the case.
But here’s the kicker– food can cause you to be in pain. Changing your diet can help you to feel so much better. Everyone is different and what works for one will probably need tweaking for another. And it’s not an overnight thing either.
It’s a case of trial and error
I tried diet changes for a month at one point and they didn’t work. Admittedly, this was mainly because I wasn’t fully invested in it and I sneaked in a few things I shouldn’t have eaten throughout that month (what harm could that do, right?… Wrong!). It wasn’t until I gave it 100% and stuck with it for around 3 months that I realised the benefits.
I previously wrote about this topic at a time I felt really passionate about it and I was honestly astounded at the difference in my pain levels. I do think it’s something you need to approach with a healthy mindset and you shouldn’t feel like you can’t eat certain foods.
It’s not about dieting or restriction
It’s not about restriction. It’s more that you learn to appreciate which foods help to nourish and heal your body and which foods cause you pain. You naturally begin to make better choices because of that. As your body gets stronger, the occasional treat can be fine but– if you are like me– you aren’t all that fussed about it because you feel the difference and no food is really worth the pain.
It boggles my mind to think that I was eating certain foods every day and I had no idea just how much they were making my condition worse. It wasn’t until I eliminated them from my system for a good while that I realised this. If I eat those foods now I feel bloated, zapped of energy and can feel my pain spike.
2. Stretching and gentle exercise will be one of the best things you can do for yourself
I can bend over now without being in a ton of pain. This is freaking awesome and I can’t even tell you how amazed I am at that. Rewind to January and I could hardly bend over at all; I struggled to even tie my own shoe laces when sitting down and doing so was sore.
Introducing stretching into my daily routine is one of the best things I have ever done for myself. It’s not elaborate and I don’t spend ages doing it but what a difference it has made for improving my pain and reducing stiffness. I honestly wish I had done this years ago. The thing I like about it is you feel the difference immediately and you know you are doing yourself good.
Getting started is difficult but possible
You may feel reluctant to do any exercise or stretching because of your pain. Getting moving and exercising can be so difficult and painful in the beginning but it’s honestly key to helping you feel better in the long term. Step by step, slowly but surely you start to feel the benefits. Going from bed bound to getting back on my feet was tough. Like really tough. But I knew I had to do it and I started with just moving around my house more and then gradually building up.
Fatigue still limits me and I’m not able to do anywhere near as much as I would like to. I can also still experience setbacks now that leave me in bed for a day or for a few days. But even so, I know that I need to get moving again to truly start to feel better– it’s a delicate balance between rest and movement for me.
The things to keep in mind are: never push yourself beyond what your intuition tells you is okay for you, keep it gentle and build up slowly. It will be tough in the beginning but it should never cause you to be in agony. If that’s the case you are doing too much. Bear in mind that exercise encompasses everything you do in a day, it’s not just strictly what others would consider as exercise.
3. Don’t Push Through It
Oh how I wish I had listened to this. I pushed and I pushed until my body completely and utterly crashed and now I am nowhere near as physically fit as I was and I don’t know if I will ever return to that point. Listen to your body. I cannot emphasise how important that is. If it is screaming at you– i.e. you are constantly in excruciating pain, you have gone past the point of exhaustion and you feel like you are not coping– you are doing too much. It is
It is possible to live with minimal pain but it’s not easy. What it comes down to is making the right choices for you and sometimes that’s the complete opposite of what you really want to do. For me, I put my desire to work before my health and, to be blunt, I essentially broke my body because of that decision. Never again. Which leads me nicely onto…
4. Don’t put off making tough decisions– they are worth doing
For the year after I was diagnosed, I suppressed my intuition and did not listen. I made poor choices. I prioritised work and everything else literally fell apart around me– I was working and unable to do much more– and it reached the point where my body couldn’t keep going.
I wish I hadn’t buried my head in the sand. I wish that I had been brave enough to admit that I was struggling and I wish I had made the choice to slow down. Hindsight is a wonderful thing. At the time I just hoped that if I kept going, things would somehow get better.
The definition of insanity is doing something over and over again and expecting a different result.
– Albert Einstein
Life is tough and things don’t always pan out the way we want them to. We have fibromyalgia and we need to accept that fact will change things, no matter how much resistance we put up against it. You will no doubt be worried about what kind of life you will have if you have to give up working full time or if you have to stop doing certain things.
I think what’s worth bearing in mind is that a life in constant pain and misery is no life. The truth is, giving up certain things can actually be quite liberating because you no longer feel like life is such a struggle. Doing so also opens you up to new opportunities and possibilities that you may never have considered before.
It’s also worth keeping in mind that nothing is forever. Time out now to focus on your health could mean that you can return to something again in the future. Remember– without your health, you have nothing. Invest in it.
5. Drugs aren’t the only option and they will only help you to a certain extent
When I was first diagnosed I was under the impression that amitriptyline would sort out my sleep issues, which in turn would relieve me of my fibromyalgia symptoms. That didn’t turn out to be the case and I now see that was quite naive. I’ve talked quite recently about the reasons behind why I don’t take any medications for fibromyalgia. It’s not that I have anything against pharmaceuticals, in fact, I recently asked my doctor about LDN (but let’s not go there…).
It’s more that I wish there were better options available and that patients were given more support than simply being given a prescription and left to it. I’ve had two pretty shitty experiences with drugs (amitriptyline and gabapentin) and it sucks that, when drugs don’t work for you, you are basically told there is nothing that can be done for you. Even if they do work, it’s a case of being handed your prescription and off you go. Don’t accept that.
Medications can play an important role but they are only one part of managing fibro
I personally believe that pharmaceutical drugs only play a small role in managing fibromyalgia and that there are other options that people need to be made aware of. Drugs may play a role for some of you but if all you are doing is taking medication and nothing else, you will only get so far. I wish I had figured this out sooner and had realised that there are also alternatives to traditional medications.
The best investment I have made is with the herbal therapies. These can often be taken alongside pharmaceuticals (though always consult your doctor first) and many people will start this way and then feel able to reduce their medications over time– that’s what I did.
Herbs are the safer alternative with fewer side effects and you can, of course, take them on their own like I now do too. I wish I had known about Vital Plan long before now! I would highly recommend reading the book “Suffered Long Enough” for more insight into this.
6. You will probably only get so far with your GP but don’t let that stop you from moving forward
The sad truth is that you will probably be left feeling helpless by the traditional medical system. There will, of course, be the exception, but this is unfortunately the case for the majority. They are just not set up for managing chronic conditions like fibromyalgia.
We are stuck in a system with 10 minute appointments where there is just no way you can discuss all that is going on. I do have sympathy for doctors in that respect but I am also aware that many doctors just don’t have the right attitude or ability to deal with chronically ill patients. If that rings true for you, don’t give up!
Through being a stubborn, determined sod I would not accept the fact there was nothing else I could do. That’s something I’m so, so thankful of– I’d still be bed bound most of the time if I listened to my doctor.
Be your own health advocate. Do your research and realise that you know your body better than anyone else. Be guided by your intuition– it’s always right.
7. You need to take a multi-faceted approach to treating fibromyalgia
I think it’s important to realise that if you have fibromyalgia then your body is basically completely out of whack and it requires extra support to help it function. From my experience, it takes a range of different approaches to improve your life with fibromyalgia.
I said above that drugs only get you so far– the same can be said of everything. You will soon learn (if you haven’t already) that the people who had success in treating their fibromyalgia approach it from all angles.
Lifestyle changes can have a big impact
It has to be said that the biggest help comes from empowering yourself to feel better through your lifestyle choices. I’ve already mentioned diet, exercise and herbal therapies– which are all important– but equally important are managing stress, slowing down, improving sleep and putting yourself and your health as your priority– don’t push yourself to put everyone before yourself, it only serves to stress and wear you out.
Keep in mind what I already said– that without health you don’t have much else. Taking the time to invest in your health now will put you in a better place to help others and hopefully do the things you want at a later date. I appreciate this is all far from being easy but I can’t stress its importance enough. But above all else…
8. Never Give Up!
Hold onto that hope of feeling better, embrace your stubborn side and don’t let anyone or anything stop you from moving forward. There will be many blocks that appear along the way and you are sure to feel disappointed, disheartened and frustrated as you figure things out. But remember that you’ve got this. If you’ve read all of this post then I know that you believe things can get better for you. That is a massive step forward in itself. Keep going!
What would be on your list? Let me know in the comments down below.
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