Haven't Been 'Formally' Diagnosed, but...

[jenrific]

I just started an account here, and I'm very new to all things fibromyalgia. I don't know if this is what I have, honestly. I'm not even sure when symptoms started, I'm guessing when I was in my early 20s, I'm 49 now. Over the years, I've mentioned some of the weird things to doctors and it was usually met with excuses like it must be hormones, if I lost weight it would go away, old age, being a woman, stress, etc.
As far as symptoms go, at any given time: skin issues (dermatitis in various spots including palm of one hand and back of neck that was originally thought to be psoriasis), bruising easily, cuts that take forever to heal, scars that never seem to go away, heart palpitations, hair loss and breakage, brittle nails, memory loss (scary stuff, when you are mid-sentence and can't think of a name or word and mind is completely blank), female issues (extremely heavy cycles, uterine fibroid tumors and ovarian cysts), moodiness that has at times made me wonder if I'm suffering from a mental illness, dizziness, fatigue, pain (headaches, neck, shoulders, elbows, hips, sciatic, knees, feet- not all the time or all at once. But when one area hurt it stays like that for 4 or 5 days) vision issues (only started needing glasses or contacts in last 2 years or so), lack of muscle strength (there was an instance about 17 years ago, I tried to step up on the back bumper of a small pick-up truck to pull myself up to get in the back and could not pull myself up, no matter what I did), elbows that feel like they could break if I lift something wrong, sensitivity to light, sound, and touch, mouth sores, silent reflux, sleep issues, facial twitching, restless leg (occasionally), and the flare ups. When I tried to explain to a medical professional or anyone else what a flare up was like (feel like coming down with flu, body aches, joint pain, freezing, no fever, extreme fatigue, really bad brain fog, canker sores), they typically looked at me like I was nuts. I've seen a pattern with them, if I'm overly stressed, pushed myself physically too far, or sometimes it's what I've been eating will cause a flare up.
Like I mentioned, this has been going on for years. For the most part I stayed quiet about it. Then this year, my daughter was diagnosed with hashimoto's when she had to have her thyroid removed because of a cancerous tumor. (she's fine now, thank goodness!) In researching with her about that, it caught my attention and I had asked my GP doctor to rule it out for me. Thus started the crazy looks again. A blood panel showed that my vitamin D was low and that the ESR rate was high, all thyroid numbers were within range. It also ruled out RA and lupus. A thyroid ultrasound showed no hashimoto's. So, I came across the FM/a test and figured it could rule out fibromyalgia as well. I received the results on that yesterday. It says I scored an 86 and a strongly confirmable diagnosis. I have read through some other posts about the legitimacy of the test. Right now, I just want to know what it is that I've been dealing with for all these years and give it a name. My husband (we've been married less than 2 years) thinks I'm trying to come up with my own form of illness because my daughter has one, which is utterly ridiculous. He's not very understanding when it comes to any of this.
I have no idea where to go from here. If my regular doctor doesn't want to consider the results from the FM/a test, I don't know what my next step ought to be, as I don't see him again until next year.
Thank you for reading this far.

 

[sunkacola]

Hi jenrific and welcome to the forum.
I am unsure what you are referring to when you say "the FM/a test". What test is that? To my knowledge, there isn't any reliable test that will definitively diagnose Fibromyalgia. The diagnosis is generally arrived at by a process of eliminating all of the other things it could be.

What you describe in yourself could be fibromyalgia, but it also could be other things and unless you are tested for those things you won't know for sure. Fibromyalgia is what they call it when they cannot figure out the cause of your problems, basically. Giving it a name doesn't change anything, but it does give you something to write on insurance forms, if you need that.

Having said that, you are welcome here and your symptoms definitely fall into the range of what we experience as people with FM. There are many things that you can do for yourself that may help you with the management of this syndrome, and I have made a post about them. I highly recommend that you read it and start implementing some things from that compilation. Unfortunately, it is up to us as the people experiencing this to help ourselves for the most part, because there is no medical cure that has been found so far.
Please read up and let me know if you have any questions. People here are ready to help and to offer support to you. You are not alone in this.

As for your husband, you are in good company here as well because many people here have family members who do not believe them or who accuse them of exaggeration. In face, this is very common. One thing you could try is to ask your husband to read the things you find online that confirm that your symptoms fall into the realm of what is called FM. You can also let him know that his disbelief in you causes you stress, which in turn is guaranteed to make your symptoms worse, since stress is a major trigger. We are here to support you in brainstorming things you can do to get more support as well.

Here is where you start:

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

 

[JamieMarc]

Hi jenrific! And welcome!
To be honest, I'm not really sure how to respond since I didn't see a question in there. Or maybe that was a question at the end. Not sure what your next step should be?
Sounds like you got a lot of stuff going on so rather than try to tackle it all at once perhaps decide which symptom is the most problematic for you, which of those as the biggest impact on your quality of life and address that one first. It's possible you've got more than one thing going on.
I'll give you a real quick recap of My own story and I mean really quick. I began experiencing pain about 6 years ago. The pain gradually became more widespread. I saw specialist after specialist, had surgery, physical therapy, numerous radiological scans, medications, injections etc. You get the picture. Ultimately, as sunkacola said, after none of these found anything or produced any results I was diagnosed with fibromyalgia. It could still turn out that I've got something else and we'll see. At this time, I am still in the early stages of experimentation with what helps and what doesn't.
I wish you the best and remember that we are all here for you. And like I said, perhaps decide which of all those things has the biggest adverse impact upon your quality of life and begin with that.

 

[jenrific]

Thank you for your replies! I guess the question I have is in regards to the legitimacy of the test. It's the FM/a test by EpicGenetics that tests chemokine and cytokine proteins with a blood test. They use a scoring system 1-100 with scores of 50 and higher indicate positive for fibromyalgia. I scored an 86. I'm wondering if anyone else has taken this test and it confirmed their diagnosis. I know that there is no cure and that the focus is more on managing symptoms so taking a test like this is not the final answer. I think having a name for whatever I have been dealing with for so many years will help in dealing with it.

 

[JayCS]

So, I came across the FM/a test and figured it could rule out fibromyalgia as well. I received the results on that yesterday. It says I scored an 86 and a strongly confirmable diagnosis. I have read through some other posts about the legitimacy of the test. Right now, I just want to know what it is that I've been dealing with for all these years and give it a name.

Hi there, jenrific... Well if you're looking at the results of Gillis' (EpicGenetics) blood test that way, you're perfectly right in that it at least hasn't ruled out fibromyalgia. Your cytokines & chemokines being wonky means that it might well be that or something similar, & praps autoimmune - not saying that fibro is, that's by far not proven yet. And giving your symptoms a name, praps the name fibromyalgia, is essential to help you find your way here, as it has, and elsewhere to what others in a similar situation are doing, which is the only way to get on with yourself, as well as your husband and your docs. If the stuff we suggest doesn't help at all, then maybe it's something else, but actually what we suggest is pretty flexible for whatever people have that aren't getting other diagnoses... So I'd see it optimistically: it's bringing you closer to what can help, even if you sometime decide for yourself you need different names for it to get even closer.
Edit: OK, you've been writing while I've been going on...: Only occasionally are people here who have taken it, but when I've heard people on fibro forums having taken the test (about 20 up to now, I'd say), they have usually said that they have scored high (usually >90) and that it helped them accept that it is fibromyalgia. Someone the other day wrote it scored low for them, but if everything else has been excluded and the symptoms fit, using "fibromyalgia" as a measuring rod even then can help you find treatments for yourself.

My husband (we've been married less than 2 years) thinks I'm trying to come up with my own form of illness because my daughter has one, which is utterly ridiculous. He's not very understanding when it comes to any of this.
I have no idea where to go from here. If my regular doctor doesn't want to consider the results from the FM/a test, I don't know what my next step ought to be, as I don't see him again until next year.

Before suggesting anything additionally to sunkacola's suggestions, may I ask back?: What does your husband understand? The other symptoms are maybe undramatic each for itself, but how can/does he not see/believe your pain, fatigue, weakness, sensitivity and flares? What are the kind of things that would make him believe? Is it perhaps that as you say you have "for the most part stayed quiet about it" (and are now realizing that's not helping?) Maybe that's what has to change fast & hard.

I have no idea where to go from here.

Apart from the good advice from @sunkacola and @JamieMarc to take it into your own hands, is it possible for you to try out, change, get 2nd opinions from other docs who know about fibromyalgia? There's quite some resources here, naming a lot, depending on where you live, or you can ask fibromites near you, or just phone around and ask at the desk... It's also luck. My sleep lab psychiatrist of all people was best for helping me with job rehab and discussing supplements.