Am I on the right track?

[UnknownRN]

Hi all, new here. I'm not looking for a diagnosis - I just need to know if I'm on the right track in suspecting fibromyalgia for my pain, if I need to rule out more testing, or if there'ssomwthing else to consider. I've tried to do my research, but can't find direct answers to my problems. I'm 31 years old, work part time as a RN, and have 3 children. I have approximately 5 family members with fibro, including my mom and grandma.

I feel like my symptoms that could be attributed to fibro started around 2016, but everything just seems like it is progressively getting worse. I had a lot of blood work done and it has ruled out Lyme's disease, rheumatoid diseases, autoimmune diseases, and my electrolyte and vitamin levels have always been normal. I was diagnosed with IBS in 2016 after a colonoscopy due to bowel changes (frequent diarrhea). It now comes and goes but isn't as bad as it was then. I also developed persistent migraines after my first bout of covid that have been almost nonexistent with the use of 3 supplements.

Over the past few years, it seems I have these "flare ups" for no definable reason. For example, just this week alone, I've had pain in multiple areas. My right pinky felt sore, like as if he needed to pop but couldn't be for about 4 days. No injury. Yesterday my right tibia felt like the bone was literally going to break through the middle, but when it didn't hurt to stand. When I got into bed and put pressure on my bent knee, there was a stabbing pain down my leg. I realized it was probably muscular and it totally disappeared this morning. I had a "breakthrough" migraine, which feels like a knife through my eyeball. My right heel has been very painful for the past 2 weeks. I suspect it's plantar fasciitis, but this pain comes and goes as well, and is not always triggered by activity, such as me working a 12 hour shift. My left arm felt like a constant cramp on Thursday, could not isolate anything I might have done to it. I continue to get pelvic cramps very randomly, even though I'm on birth control that makes me only have a period every 3 months. I was in a car accident in 2012 that caused a jaw injury (no fracture) that really only caused pain for about 2 months. My jaw "flared" 6 months ago with minimal pain but very loud popping and a feeling of looseness. After several treatments with the chiropractor, it resolved. Now in the past week, it's back.

I'm so tired of feeling like I'm limited. My husband and I started a garden and it took me two days to recover from the backache and stiffness, and all I did was put the plants in the ground and move some dirt. I'm 31 years old and can't keep up with the older nurses who work three 12 hour shifts in a row!

For those that have fibro, do these random pains and days of pain after minimal activity sound like fibro?

 

[sunkacola]

Hello UnknownRN and welcome to the forum.

From what you are saying in your post it seems possible to me that you have fibromyalgia, and you are not on a wrong path to investigate that. Of course, it's good to get tested for everything that could be causing your issues, in case it is something else, but if nothing turns up the end result may be that you are diagnosed with fibro. What you describe is not at all uncommon for us "fibromites".

Hang in there and if you do get that diagnosis (or even if you don't) remember you are welcome here and this is a good place for information and support. Ask any question you like, and probably someone can answer it. You are not alone in this and we are here for each other.

 

[UnknownRN]

Thank you for the kind words, Sunkacola. I tried really hard to figure out what was wrong with me for a couple years, then gave up when I got blanket terms and "you're just getting to that age" at 24. I watched my mom and grandma suffer many years with fibro and dreaded as a child that one day I'd live that life of pain. Now here I am, having fulfilled my dreams of becoming a nurse and a mother to be limited of what I can do because of pain. My pain is so migratory, I can hardly even plan what I can do because I don't know what is going to hurt next. I

I'm just so frustrated I don't have the clear cut answer of what is wrong with me and what to do about it so I don't have to live like this. And the way our Healthcare system is that makes it so difficult to get a diagnosis and invest so much time and money to get it. Ugh... I'm just venting at this point. I feel dejected and sorry for myself, but looking through this forum, I see I am not alone. Thank you for the encouragement and wonderful community you have created here.

 

[sunkacola]

You can vent all you want to, here. We don't mind.
But the truth is, and of course you know this, venting is one thing and feeling sorry for yourself is another and the latter will only hurt you, not help.
Take the energy you spend on feeling sorry for yourself and turn it into energy spent to do the things that will help you feel better. You want to know what to do so you don't have to live like this----here's an answer to that. I wrote a long post about this and I encourage you to read it, take in what it says, and start doing your own work immediately. whether or not you have fibro it will be helpful to you and if you do have fibro it is the key to feeling better and learning how to manage it.
Please ask if you have any questions.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[JayCS]

In addition to sunkacola's advice, maybe there's something I've learnt about my body that may help you, fibro or no (it is though).

I divide my pain into a (severe) overall flu-like Ache together with exhaustion from overdoing it (praps like you in the garden), and
local pains (like your other pains), which may influence / be connected or unconnected to one another and also the Ache.

I control the Ache by learning from experience (knowing) and listening to my body (sensing) when to stop and when a risk may be worthwhile.
I've managed to work on my local pains by preventing their triggers and alleviating, so I can keep getting them down to zero.
They can come up, but I then focus on one after the other, work on them, and can get them down. Zero tolerance - that means I don't wait for anything to go away by itself, don't wait for anything, I start treating it seconds, minutes or at the very latest hours after it starts and continue treating it even if it stops for a while. The problem you'll have is that you have so much going on that it's hardly quiet enough for you to listen to your body. But things like the gardening are moments where you are being forced to slow down anyway, so why not adapt and listen more closely.

But to apply this to your actual question: For your pains to be fibro they'd need to be widespread, which they sort of are, but I'm not sure how much at the same time. And you'd also need some severe further symptoms like fatigue, insomnia and fog, and/or some of headaches, gut, depression. So I'd take your symptoms as a warning sign that you're going that way and could also end up there, if you don't do something about them before it's too late. Wouldn't make sense to wait to get it, now, would it? - just to be certain you're on the right track....
In another sense of the word "track": I'm hoping that your body is not on the fibro track and that you'll on a parallel track make sure that your symptoms do not develop further in that direction. This would then be the time for prevention with youtube exercises (type in different words for your symptoms, but plantar fasciitis is a good start) and pain supps, and I think most people would agree: not meds....
So even in all that's going on, your body is asking you to self-care. And you don't need to track your fibro suspicion for that. Concentrating on diagnosis or cause or whatever may even be a distraction wasting valuable time instead of just tackling each bit on its own.

 

[FarmerJoe]

Hello UnknownRN:
As you know, diagnosis is a process of ruling out what it isnt more than what it is with Firbromyalgia. It is a lengthy and slow process and often expensive and frustrating. I too was in health care and strangely, found that community the lease tolerant of medical problems and limitations. I pushed forward and did much more that I was able to do, and it finally culminated in leaving the work force earlier than I had planned. The most difficult part for me as as you described, not being able to know in advance what type of day you were going to experience so you know how to plan in advance. I had to go ahead and make plans, and when the time came, I would have to sometimes change my plans at the last minute. Sometimes people would understand, sometimes they would not, but you must learn to take care of yourself in order to be able to take care of others. Its like in my old first responder days, if you are unable to get there safely, you will be of no help to others. As a nurse, unfortunately you always want to put others first, it is just who you are. Please remember to take care of yourself first in order to be able to take care of others. It kind of goes against all you know, but it is true. Like others here, I have good days, and I have not so good days. I have learned to take the good with the bad and do the best I can with what I am given. I hope you have an understanding family and employer. Be patient is hard to hear, but the diagnosis path is long and hard. If you have a understanding physician who is willing to make sure they are covering all the bases, you are doing very well. I hope to hear from you again here and hopefully you will get the answers you need to move forward. Best wishes for you and your family.

 

[ChristaPeanut]

Hi UnknownRN:
Just wanted to say that my problems probably came on over about a six year period, starting when I was 32. Every one told me that I was "just at that age" and I wanted to scream. Because what was happening felt different, but it was confusing because how would I know what "just getting older" feels like without just getting older? I have friends that are 10-20 years older than me and I was like "they are fine and also sometimes runners or high activity people, so this can't just be getting older??" I have hypermobile joints all over and when I finally saw a Rheum last year, she said it's common for people with hypermobility to develop fibro as an adult. Anyways, just bought our first house this year, and I have quickly discovered how much I can do in a day--spoiler alert, it is not a lot! Sounds like no matter what your diagnosis might be, that you are having similar issues and just wanted you to know that you are not the only person that has to navigate these insane waters. Gentle hugs! P.S. I sometimes wake up with random toe pain. It's a different toe each time and lasts for a day or two. Not usually brought on by a specific activity that I have been able to track yet.