Trying to get diagnosed and cope with the pain

[emxmas]

Hi my name is emma and I’m 19.
This past year has been the most difficult and stressful time. I started getting daily headaches about a year ago and everything has just gone downhill from there. I have had numerous blood tests and all come back fine. I’ve suffered from extreme fatigue, sleeping like 14 hours a day and still feeling tired, brain fog where I cannot even form a sentence and don’t even know what I’m doing sometimes, extreme pain throughout my body, every day is a different point of pain, dizziness to the point I can’t even look straight and feel as though I could faint at any point but never do and I get shooting pains throughout my fingers and sometimes they are agonising pain.
I recently had to quit my job after only working for 2 months as my body was unable to do it. I only worked two days a week and even this was too much for me.
This I’m has been so frustrating as I’m only 19 and want to be able to enjoy myself and not always be in pain and tired.
I haven’t been diagnosed yet but my doctor and other specialist think it is most likely fibromyalgia.
I wasn’t wondering if anyone had any tips on how to handle it and what makes the pain less severe. Is there anything I can do to try and manage what I can do as some days I can’t even get out of bed as I’m too weak.
Any advice would be appreciated.
Thanks, Emma

 

[Jemima]

Hi Emma,

It's lovely to find you here, although I'm so sorry for the reason. As you said, you're far too young to be dealing with this kind of thing! Sadly, sometimes we can't unmake an unfortunate reality, but there are certainly things to be done to positively alter it. The good news is that while fibromyalgia isn't currently curable, it is a condition that can be managed. It's important you finish the diagnosis process with your doctors to rule out any other possible cause for your symptoms. But, in the meantime, you can start doing things that will help fibro right away.

Learning to do more of things like stress management, sleep hygiene, eating a healthy diet, light daily exercise, pacing your daily activities, etc. all make a really big difference to symptoms - honestly, more than you imagine. It's definitely worth having a read of our moderator Sunkacola's fibromyalgia management guide here, as she gives some great tips. Exploring relaxation techniques for stress management can be really helpful - we're all a bit different, so try to find what works for you. You may also find that you have chemical or dietary sensitivities - experimenting with cutting things out one at a time may help you figure out how to provide some relief, but this isn't true for all of us!

Have a read up on "spoon theory". This will help you get the measure of pacing, which is really vital in fibromyalgia. You might also find it helpful to start a little notation diary, in which you track your daily symptoms and what else is going on, to see if you can spot any triggers that you'd then be able to avoid/manage. Triggers might be things like doing too much of an activity, being around someone you find stressful, having too much alcohol, getting too hot/cold - the list goes on and on. When we understand our triggers, we can navigate how best to either avoid them, or give ourselves extra support when we can't get around them!

Whatever you try, don't make too many big changes too fast. By making smaller incremental changes, we can pinpoint what actually helps while not shocking our body and setting off a flare. You may decide to try medications for fibromyalgia prescribed by your doctor - with these be careful, because they don't work for everyone, most have pretty hefty side effects, and some can be difficult to withdraw from. So, do some research before making an informed decision! If you read around in the forum here, you'll see that a lot of us have had more success with stacking certain supplements. Unfortunately, there's no definitive list because we all seem to be different, but you can explore this and experiment if you want to.

All of us go through a period of grief with fibromyalgia, and if that's what you find you have, you will need to take the time to process. This is an achievable feat, and acceptance is the goal. Fighting against the condition will only leave you stressed and trigger your symptoms more, so it's a case of working towards making peace with it, and finding (and potentially gradually stretching) your new limits, so you can enjoy the best quality of life possible. Doing all these things will almost certainly help you bring your symptoms down and get them more under control. Fibromyalgia does tend to go up and down, but never assume that the way you're feeling now is permanent!

The last thing I'll say is that it really helps to keep in mind that fibromyalgia pain is horrible, but it isn't a threat - there isn't real damage to our bodies, so it can be useful to try to think of it as something we don't need to be scared of. It's an overly loud signal that can help us figure out when we need to slow down, or when we're overwhelmed, and it's something that gets much less scary with time. That's not to say it's a picnic - it's not a fun thing to be lumped with - but we can think our way out of a lot of suffering by allowing it to come and go as much as we can. All of the other symptoms - the fatigue, the fog, the dizziness, the recall issues, and more - will also come and go, and can improve a lot if we find the right approach for our bodies.

All of us here will always be around to answer any questions you have, or commiserate when you need to vent. You're not alone!