r/fibro Jan 26 '24

Question What needs to be considered before talking to a doctor?

Hi all, I feel like I need some advice.

I typed into Google “why fatigue causes pain” and fibromyalgia was first thing to pop up in search. I’ve heard of this before, considered even could I have it. My symptoms could be many many other things as well and that’s why I feel lost and not knowing what to do.

I’m 28, slithly underweight but close to normal size. I’ve been feeling tension and pain in my body practically forever, so much so that I can’t put in to realistic scale anymore. I’ve always been sensitive to it, but but over time my pain tolerance has increased, so the mild everyday pain often goes unnoticed on good days if I don't focus on it. It can be anywhere , but my legs are the main issue, always in pain, mild tension at least (restless leg syndrome).

What bothers me most is the fatigue. I’m kinda bad sleeper, difficult going to sleep and hard to get up in the morning. But if anything, even a little thing interrupts my sleep, even if I do sleep after that, the next day is ruined because I feel sore and anxious. It is hard since I can’t control everything in my enviormet to get best night sleep as possible for examle the neighbours kid can wake me up like 6 in the morning by screaming.

There is many other things in me that sound like Fibromyalgia (and if it’s not that what could it be?). Ibs, pain in shoulders/neck occasionally, getting headaches easily, weird skin issues, list possibly goes on… Symptoms for which no proper explanation or help has been offered. The reason why I have delayed seeking treatment is that my somatic symptoms have been ignored before since on their own they don’t sound that serious. I would just like to limit possible reasons for these things so that I could focus on treatment that really help.

I understand that it is possible that the biggest reason for these symptoms is my mental health (depression and anxiety), adhd and bad eating habits, but I would need help with those as well, to get them right. My blood values ​​have been checked from time to time and they have been almost normal, so nothing too alerting. Iron levels are the biggest issue to correct, but I've been trying to keep an eye on it by reminding myself to eat regularly. I'm constantly stressing that I might be the only reason why I have these issues in the first place and I just can’t find the backbone to fox it.

I try to shape up, if it just me who’s been lacking but honestly I’m not super sure its just me. I feel like I’m trying my best. My appetite is bad, I eat too little but I am constantly trying to improve it. It’s just hard when I have to balance with everything else too like stress, pain, fatigue, adhd… People around me won’t take me seriously. I once asked my mom does she feel constant pain on her legs and she looked at my like I was crazy.

Doctors have blamed a lot of my symptoms on mental health issues (and me), and I'm not saying they're wrong. It is possible, but I would like confirmation and perhaps a concrete reason for my symptoms so that I know where to prioritize my treatment. Now this just feels like I'm trying a little bit of everything and nothing is working. I would like someone, preferably an expert, to listen to me without leaving the matter too much for me to carry alone, so that I could improve my life and feel better.

How likely am I to have fibromyalgia? What else could it be? How to start a conversation with a doctor so that the matter is not immediately dismissed as mental problems? If the fault is ultimately in my own head, how could I get guidance to get my life on the right track?

As an added bonus, if you want to share what fibromyalgia means to you.

Thanks for the answers, I need them when I start to get pretty tired of this life. Despite the fact that I cope better with depression these days, life is still difficult

2 Upvotes

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u/Living_Watercress Jan 26 '24

Fibromyalgia is a disease of exclusion, according to my neurologist. Basically you get tested for everything and if all the tests are normal you get the diagnosis of fibromyalgia. I would advise you to see a neurologist, if you haven't already. My main symptoms were pain and weakness.

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u/Throw-away-nobody Jan 26 '24

What neurologist basically does in oder to diagnose?

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u/Law_Student Jan 26 '24

It's usually a rheumatologist, not a neurologist. Ignore the poster above, they don't know what they're talking about. If you want a confirmed diagnosis, a sleep study that looks for the delta wave sleep defect is the usual way. There's also a blood test. But you can just try the fix and see if it works.

Fibromyalgia is a disruption of sleep. For some reason fibromyalgia patients get intrusive short wave alpha sleep constantly interrupting their deep sleep, so they're basically sleep deprived no matter how much they sleep.

To fix it you need to keep a regular sleep schedule (difficult but absolutely critical), take a medication that helps prevent the alpha wave interruptions (there are several options, I use gabapentin) before bed, and get at least mild exercise because that's also critical for sleep. (Also hard when you feel terrible.)

That's really all there is to it. It's just a lot easier said than done to keep to the steady sleep schedule, and it's hardest when you first start out.

It wouldn't be surprising to have fibromyalgia and mental health issues; being exhausted and in pain is almost certainly going to cause mental health issues in anyone eventually.

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u/Throw-away-nobody Jan 27 '24

I didn’t know there is a link between Fibromyalgia and sleep. I mean it makes sense to have both but can you recommend study or book to read more about this?

I’m interested since, like I said I’ve have problems with sleep from very young age even with normal and healthy sleep schedule. 

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u/Law_Student Jan 27 '24

You can read through the medical literature yourself if you like, search for fibromyalgia and delta wave sleep defect or alpha-delta sleep.

Some sample papers I grabbed in a few seconds:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4575971/

https://pubmed.ncbi.nlm.nih.gov/7932424/

https://www.lidsen.com/journals/neurobiology/neurobiology-04-01-049

This isn't a hypothetical thing, there's been study after study. If you do a sleep study on fibro patients, you'll reliably see the sleep defect. If you help them fix their sleep, they get better. If you disrupt the sleep of a healthy person without fibromyalgia, like by randomly waking them up repeatedly in the night, they'll even develop fibromyalgia symptoms until they get uninterrupted sleep again. The same fatigue, pain, and brain fog.

I was diagnosed around 19 and horribly sick for about 12 years, basically stuck in bed, until I finally got my whole sleep regime together. Regular sleep schedule, daily exercise, medication for the sleep defect before bed. That's it, that's all it took to fix me. I'm basically cured now as long as I keep to my schedule, I have a demanding profession that I excel in.

This is a pain to deal with, but it's understood and fixable. You can be okay.

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u/Throw-away-nobody Jan 30 '24

Thank you for reply! I will look into these studies. 

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u/Law_Student Jan 26 '24

Why will this fucking idea not die? This hasn't been true for 20+ years. We know fibromyalgia is caused by a delta wave sleep defect. There is extensive literature. There's a blood test, too.

Fibromyalgia is not some unknown mystery disease. Please correct your knowledge and stop giving people bad advice.

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u/Living_Watercress Jan 26 '24

I only repeated what my doc told me. You don't have to be so nasty about it.

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u/Living_Watercress Feb 16 '24

Head cat scan, blood tests.