No Diagnosis but Experiencing Symptoms, is it Fibro?

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New member
Apr 15, 2022
Hi everyone! I'm a 21 year old female and I'm so happy I found this forum because I have no idea where else to ask some questions I have and receive input from people who are actually experiencing fibromyalgia.
I've always had a lot of sleep issues, but for the past few months they have been getting worse and worse, including not being able to fall asleep for hours and in some cases not sleeping at night at all, never feeling rested when I wake up in the morning even if i've gotten well over 8 hours of sleep, and feeling intense general fatigue all day (made worse by not being able to sleep at night even with sleeping pills sometimes). I explained all this to my doctor and she thankfully referred me to a sleep clinic. I did the survey they sent me as part of my intake and based on my answers to the questions and my symptoms, I assumed I had chronic fatigue syndrome. I'm aware that I already experience symptoms consistent with restless leg syndrome as well as IBS. However, over the past couple weeks, I have noticed a sharp increase in pain, specifically headaches that don't go away with pain medication that radiate down through my neck, shoulders, and upper arms. I am also now experiencing muscle pain that feels like I have been to the gym (achy, sore, and stiff) when I haven't, and I feel stiff and sore kind of all over when I wake up. I've noticed that things that I could generally do at work (like throwing out the garbage at the end of the night, lifting moderately heavy things) now feel much more difficult as if my muscles and specifically my elbow joints have gotten weaker. The muscles in my legs feel like they're pulsing and almost spasming sometimes, and for the past couple days I have had a spot in my left buttock that hurts when I walk. Heat doesn't help the pain, epsom salts and lavender in baths don't help, and as I am writing this I am in the middle of a pretty intense headache and neck ache that two extra strength Tylenol has not helped at all. As for the mood symptoms, I have them all, including depression that has not responded to SSRIs at all, and is only somewhat responding to 150mg of Wellbutrin. I also frequently have extreme menstrual cramps and heavy bleeding. I'm not overweight at all, and I'm also moderately active. I should add that I was in a very abusive relationship a couple years ago, and I'm still actively dealing with the trauma that has caused me so if it's possible for fibromyalgia to manifest because of trauma like I've been seeing, then I would definitely say that could be a source.
I know that I just listed a huge amount of things (sorry!!) but I would love to have some sort of idea of whether or not I'm headed in the right direction with possible fibromyalgia before I have the appointment. I'm generally very bad at objectively thinking about what I'm feeling, physical pain-wise. I also wanted to know, is it normal for the pain to be one of the last symptoms to present?
Thank you so much for taking the time to read this and potentially respond! it means a lot to me.
Hello audiej, and welcome to the forum.

The thing is that no one here can answer your question: "is it fibro?" and the reason for that is not only that we are not medical professionals here. The main reason is that a true diagnosis of fibromyalgia can only be arrived at by a process of carefully testing for and eliminating ALL of the other things that might be causing your symptoms.

This is further complicated by the fact that you may have one disorder causing one set of symptoms and another that is causing something else. The investigation required is pretty exhaustive (and often exhausting). But you need to go through it because if you don't you may not find out something that needs (and may respond well to) treatment.

So, unfortunately we cannot even tell you if you are headed in the right direction thinking it might be fibro. You will need to see a number of doctors, or else one doctor who can and will order all of the relevant tests (and there are a lot of them) that pertain to all of your symptoms.
There is almost nothing that is "normal" for fibromyalgia because there are so many symptoms that show up, and every single person is different in how they manifest. The only thing that is truly consistent is pain, and fatigue goes along with it the majority of the time. But you cannot know that anything is caused by fibromyalgia unless you KNOW that it is NOT caused by anything else.

I highly recommend that you do your research, and hang around here for support while you go through the necessary testing to discover what it is that is causing your problems. One thing I recommend is that you do not go into the appointment and tell the doctor you think you have fibromyalgia. Not all doctors even believe it exists yet, and some have a bad attitude toward it and the people who suffer from it. Simply present your symptoms in a matter-of-fact way and ask what tests could be run to investigate the causes. And don't jump to any conclusions on your own. Get the tests so you can be sure.

Best of luck to you.
Hello audiej 👋 - as your pain has only just started, it isn't chronic, so it by definition isn't fibro.
And what it may eventually develop to is a matter even vaguer than what it is now.
Aside from getting the testing done to make sure it's nothing else, as sunkacola says,
you can do lots about your symptoms as they are, and ▶️ sunkacola's Big Advice Post is a good starting point, fibro or no.
Generally checking bloods, e.g. for vit. D and B12, trying those and other general supps like good magnesiums, very gentle exercises, using massage gadgets might all help get the pain down and not chronic...
You won't be wanting it to become fibro after all, just to have a 'good' diagnosis... 😜
I’d suggest getting a notebook and keeping a food diary, activity/anxiety diary & symptom diary . See if you see any pattern. Keeps a meds diary & med changes also. Go to your appointment armed with knowledge about your symptoms’ relationship to foods/anxiety/meds. There’s a lot of good information out there and also some not so good information. Try meditation or simple sloooow exercise to reduce your stress & to sleep better. It’s a lot of work on our part, but we need to try to help ourselves as best we can. Good luck.
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