What I Want Newly Diagnosed Fibro Warriors to Know
There have been a few times when close friends, or people who came across my blogs, have contacted me, asking me for advice as they are suspected to have fibromyalgia. Sometimes they found something treatable and other times the diagnosis came back positive for fibromyalgia. It is heartbreaking how many people struggle with this illness and terrifying for anyone who thinks they may have it.
I am writing this article, firstly for those who are newly diagnosed or think they may have fibromyalgia. This is also for those of you who have been fighting this illness for a long time, I pray you will find some hope somewhere in this article. To anyone with friends or relatives going through this, may you find some insight into what to expect and how to support those close to you.
The first piece of advice I always give is “Have hope. Your life is not over.” This is the most important piece of advice I can give. At best, people diagnosed with fibromyalgia may be given a frightening prospect that makes them question what life holds in store for them. At worst they may get a terrible doom-and-gloom diagnosis from a doctor who tries to tell them their life is over – this is what I had and it is absolutely not true.
Life doesn’t end with fibromyalgia.
You are a warrior, not a victim. It may not feel like it, especially during the early days and periodically throughout the illness. There will be days when you feel like you are losing the battle, you can’t get out of bed and everything is overwhelming; those days are just battles, you are not losing the war.
It took me a long time, with my other illnesses as well as fibromyalgia, to consider myself a warrior or a survivor. I never really thought of myself as a victim, but when the suffering gets too much it’s hard not to dwell on the fact that you didn’t ask for this and it’s not fair. Nobody deserves this illness.
Lots of people will give you different opinions on what you’re going through and how to handle it. Advice will range from ignorant dismissals of your illness to well-intentioned advice. Some people will even tell you not to feel sad. It’s important to try and keep positive, but if you are feeling low today, just remember you have the right to feel the way you feel.
Some people will suggest various alternative therapies and lifestyle changes you should make and sometimes people may be offended if you don’t try them all at once. Just remember you know yourself and your body better than anyone else and you have to decide what feels right for you.
It’s OK if what helps someone else doesn’t help you. It’s OK if you don’t feel able to turn your life upside down in order to try everything at once. It’s OK if you use medication to handle your pain. The only thing you have to do is what feels best for you.
In my early stages, I came across a wonderful nutritionist who invited me to join her Facebook group. She talked about giving up gluten and dairy and sugar and half a dozen other things. It was all too much for me. I tried it, but I just felt like I was falling apart. I stayed in the group, but I didn’t make any nutritional changes originally.
I had to wrap my head around my illness, what was happening to my body and how to manage the long list of tasks that were right in front of me at that moment. I was juggling university with hospital appointments, additional doctor appointments and tests every time a new symptom came up. I was fighting every day to get up and get out to do what had to be done and fighting battles such as finding suitable accommodation. Turning my diet upside down was just too much and I was living alone for the first time, struggling with the increased pain that came from having to prepare meals – takeaways were my lifesaver when I was too sick to cook and they aren’t exactly friendly to restrictive diets.
It was a couple of years before I started giving up wheat. I was getting sick all the time and where I used to do a three-day wheat detox every three months, one day that wasn’t enough and within 24 hours of eating wheat I was bed-bound again. For about three years, removing wheat from my diet was the only dietary change I made. It really helped, but I also knew it wasn’t enough. I just couldn’t handle any more.
This is where I came faced with a number of people who kept sending me the same messages over and over, telling me to cut out various things from my diet. I was struggling with cutting wheat out. It was a huge food group and about 90 percent of the things I had been eating contained wheat.
When I was ready, I started with the next change. I’ve been working for a few years now with removing different things from my diet, reintroducing foods to test my tolerance and checking I have enough of specific nutrients in my diet. It’s an ongoing process and I have found a number of things that help. I still have people telling me to give up other things; most people understand I find it difficult, but occasionally I find people who are very demanding that I must do it all now.
The fact is that having fibromyalgia is a huge change and anything you do to try and help manage it will become another major change in your life. You have to do things at your own pace. By all means, read up on it and find out about the things you can try, just don’t beat yourself up if you find you can only make one change at a time.
Fibromyalgia is a marathon, not a race. Pace yourself and I genuinely believe we can all find things that help and ways to manage. In the meantime, you are not alone. Speaking to others who have fibromyalgia is your most valuable resource; it will show you that you are not alone and give you new suggestions to try, even when it feels like there is nowhere else to go.
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Thinkstock photo via annuker.