Fibromyalgia?

ChristinaC

New member
Joined
Jun 29, 2021
Messages
1
Reason
Undiagnosed
Diagnosis
00/0000
Country
CA
Hi all,

I am new to this forum. I've contemplated joining and posting to talk to other people that have been formally diagnosed with Fibromyalgia.

About 3 and a half years ago I was in a super dark place and started to experience nerve pain at the back of my head and into my face. Fast forward a couple of months and it was every where in my body, even in my throat etc...I went to many doctors appointments, seen neurologists, GI's, and went to the hospital many many times to have MRI's, CT scans, ultrasounds, X-Rays, and a lot of blood work done + more.

Over time I've developed sometimes severe upper arm pain that radiates into my elbows and hands. I've had bursitis in my hip, and knee a few times in less than a year.I have horrible neck and back pain that almost never goes away.Quite frankly, there is pain every where on my body from literally the top of my head to my toes. Some weeks are a lot worse and some I can manage. I have a lot of stomach problems, eye problems, ringing in ears, foot and shin pain, and constantly feeling exhausted no matter how much I sleep. I slurr my words regularly and can't think half the time. Honestly, I am miserable all the time because I don't know what's going to happen or how I'll feel once I wake up in the morning. I was prescribed Cymbalta a couple of years ago by my doctor, but again, was never diagnosed with anything. I've just been constantly told it's not fatal, or to do Pilates, which is irritating. The Cymbalta helped immensely, but I stopped taking it last summer because of side effects that were bothersome. I'm going to start taking it again regardless of the side effects because I don't know how much more of this pain I can take.

I am only 27 years old and this started when I was probably almost 24. I feel that because I am young I'm taken for granted and almost feels like doctors insinuate it's all in my head and I'm making it up.

There are so many more problems and pains I experience that I just can't think of right now. But I'd just like to know other peoples thoughts on this and if they think it could possibly be fibromyalgia and what I can do to try and explore this with my doctor.

Thanks
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,464
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi ChristinaC, and welcome. I am sorry you have to be here, and it sounds as though you are going through a lot!

This could be fibro, but unless everything else it could be is ruled out you won't know for sure. What you can do, however, is start now to take a very active position in your health and well being, and try various things that might help in order to find out if any of them do. I have a post of advice pinned to the top of the General forum. There's a lot of stuff in there. You can't do it all at once, but I suggest you read it and try something, maybe just one thing, that you think you might be able to do just to get started, because no matter if it is fibro or not something there may be helpful.

I also want to support you, and say that no one should ever tell you it's all in your head. None of us would choose this. To choose to pretend to a thing like this would mean a person was truly very mentally off balance or ill, and that is extremely uncommon compared to the number of people who have fibro symptoms, so don't take it on if someone says that to you. YOU know you are not making this up.

To explore this with a doctor, I suggest first trying to find someone who is familiar with fibro because they will know what, if any, tests have not yet been run on you to rule out the other things it could be. Diagnosis of fibro is a process of elimination, so to get to it you have to go through all the other things.

Best of luck, and come back with any questions, complaints, or topics you want to. We are here to help.
 

Jemima

Senior member
Joined
Jul 30, 2020
Messages
443
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Christina,

Welcome to the forum. Everything that you're describing sounds oh-so-very familiar! It does indeed sound like fibromyalgia, although as Sunkacola said, it's important to rule anything else out as other conditions can cause similar symptoms.

Don't give dismissive doctors an ounce of your energy - they truly don't deserve it! What you are feeling is real, and deserves to be taken seriously. I hope you find better support within the medical system soon.

RE going back on Cymbalta, I also had to stop that one because of bad side effects. A friend of mine with fibro recently recommended Amitriptyline to me as an alternative that a lot of people have success with - she's taken it for fifteen years - so that could be worth exploring with your doc. For me, I've become convinced that I'm better off not being on the medication merry-go-round, but we are all unique and some people do find the right treatment for them in that area. Do be wary of opioid painkillers, as research apparently indicates that they can actually make fibro pain worse over time.

Sunkacola's definitely right that there are things you can start doing right away that might help if you are dealing with fibro, and will probably give you a boost anyway. I've made loads of progress over the past couple of years by playing with stress management, movement, supplements, sleep hygiene, and so on. I recommend having a good poke around here on the forum, reading people's stories and successes, and trying out things that speak to you. It helps to try introducing one thing at a time, so you get a strong sense of what helps and what doesn't.

It's a tough truth that there's no cure for fibro, but many of us manage to pull our symptoms into much better check with a variety of layered lifestyle changes. In the meantime, we all know how awful this can be - the pain, fog, depression, and exhaustion, just to scratch the surface! So, you will find welcoming ears here if you want to vent or bounce your thoughts.

I truly hope you find the answers you're looking for soon, and solutions to help you feel better.
 

Iknopain2

New member
Joined
Jun 26, 2021
Messages
4
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
VA
Hi there,

I am going to share with you the steps I took to get diagnosed back in 2010.

1. I saw a psychologist. Depression is what they always go to first. Are you depressed, they ask? Yes, okay that is why you are in pain. You want to get that off of their list as soon as possible by saying you are being followed and you are stable. If you are not depressed or anxious, get a psychologist or psychiatrist to put it in writing.

2. I saw a neurologist. The doctors want proof that there is no neurological deficit. In other words, do I have nerves or brain issues that would cause my muscles or nerves to misfire. The neurologist found no problems. I got this in writing.

3. I had two years of doctor's visits reporting pain all over and extreme exhaustion. Every time I had a severe episode of Fibromyalgia, I went to urgent care and got a printout of the doctor's findings. Did I appear tired? Did I have any internal issues? How were my vitals? Was blood drawn? What was the diagnosis? What treatment was given? What is the doctor's opinion? I had a great doctor who kept saying she suspected I had fibromyalgia, and she wrote that in her notes every single time. If you have a regular doctor who writes down what you say and responds to your pain. Keep going to that doctor. If the meds prescribed do not work, keep trying something else. This doctor did Vitamin D tests, ordered Lyme disease tests, and also did every other test for autoimmune diseases that would give symptoms of exhaustion and pain. They all came back negative. This doctor was great. I've had other doctors that were not great and I had to change doctors. Sometimes you have to do that. Don't be afraid to stick up for yourself.

4. I visited a rheumatologist last. This doctor was not very cooperative but he read all of the information I had gathered above and conducted his own tests and finally had to agree that I had fibromyalgia. This doctor was quite rude to me and made statements against the diagnosis of Fibromyalgia and my seeking disability. It was probably because of my age because I was in my thirties. Trust me when I say it's not worth it to allow people like this to ruin your day.

In the end, you know you best. Good luck
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
621
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Christina hasn't been here since the day she joined, but to keep it short it seems to me she has had maybe all of the exams done. Also 'cymbalta' / duloxetine is something for depression and fibromyalgia, so these would be diagnoses that are floating around, as is the comment that it's not fatal.
So the questions remaining wd just be how to get a formal diagnosis, like @Iknopain2's #4, and whether it is necessary, considering you'd have to follow suggestions like @sunkacola 's advice at the top of the forum plus others here anyway. For peace of mind some like to do the FM/a "test", altho it's not verified/established, but really all that's necessary is finding a doc who knows about fibromyalgia - like here or on the web or asking local support groups or phoning around - and for them to say yes, or no, because and then if necessary getting a 2nd opinion.
 
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