Are my symptoms fibro?

kait0220

New member
Joined
May 28, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
VA
Hi everyone,
(28 F) Just today my doctor brought up that my symptoms could be fibromyalgia. I have had a series of unexplained symptoms for at least 6+ years now. I will try to explain, but they are kind of all over the place. My first complaints were of these few second intervals for lightheadness and blurred vision multiple times a day. Abdominal pain, GI issues, occasional chest pain and heart palpitations. Depression and anxiety came next. I bruise like an overripe banana and wounds take ages to heal. Over the past year my symptoms have only gotten worse. I've been having a lot of trouble just finishing sentences - I start to talk and then stutter or can't find the word. I'm incredibly intolerant of heat. I would walk to work in 30 degree weather with no coat on. Headaches, and now a lot of pains in my hands, wrists, toes, shins? (not carpal tunnel pain though). The pain is like in the meaty part between my thumb and index finger. I'll be completely awake and then just desperately feel the need for a nap. A few months ago I felt like I was having a heart attack (which the EC doc said was a panic attack - I've had panic attacks, they never give me chest pain and hand tingling) At least twice now I've woken up with one eye really swollen and an odd rash across half my face (hence the lupus test, not pink eye though either)

I've been in and out of various specialists, had tons of blood work and everything always comes back "fine." While everyone would think that negative results are good, it's just frustrating for me. I don't know what I can do to help myself. RA - negative, hormones - good, lupus - negative, diabetes - no, lyme - negative. No inner ear issues, no heart issues, no sleep apena, stomach bacteria are fine (I had to drink powdered URINE for that test!). MRI a few years ago was fine. I thought about MS as well, but these things are so hard to diagnose. Are all the symptoms not related and I just have 14 different unrelated issues?

I'm really frustrated and nervous. If I had a diagnosis, then at least I would know what I was dealing with. I would have an idea of what to do or not to do. Should I not be knitting? Will that make the pain worse? Should I not be weightlifting? Should I be eating some kind of anti-inflammatory magic berries every day? I'm hoping that someone here can give me some advice on if my story warrants further investigation into this diagnosis.
Thanks everyone ❤

TLDR on worst symptoms - headaches, fatigue, hand pain, heat intolerance
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
145
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Sounds like Fibro but it is good to rule out other things. I spent a year and a half going to the dr's and ER and had MANY tests and ruled out heart and lung issues and MS etc. It was a long rough road but once I got the Fibro diagnosis I joined this forum and 2 other support groups. It was mind blowing to read others stories and see how many have experienced what I have and am still experiencing. I think the support has been one of the biggest help in dealing with Fibro. :)
 

Firo30

New member
Joined
Nov 8, 2019
Messages
6
Reason
DX FIBRO
Diagnosis
00/0000
Country
CA
State
Qc
Hello , all your symptoms are similar to mine , it looks like Fibromyalgia , i have tons of blood work , MRI for brain , abdomen and all came back fine , no inflammatory markers detected, so i got my diagnosis of fibromyalgia after two years of consults with different specialists.
you get that sense of relief but also knowing that you need to live with it . Depression , anxiety and Fibromyalgia are strongly related , so when we are stressed or sad more than usual , fibromyalgia symptoms tend to increase too . Good luck and keep safe .
 

Geeena

New member
Joined
Mar 8, 2020
Messages
8
Reason
DX FIBRO
Diagnosis
02/2020
Country
UK
Agree with other posts - also intolerance to hear reminds me of thyroid issues that arent always picked up in the simpler tests you can get done - plus they fluctuate. I can relate to all your symptoms. Scans ruled out other problems- but it took many sessions with the consultants to finally get my diagnosis. The main thing Id pass on to you is to push as hard as you can for frequent visits and tests.
Has narcolepsy been ruled out ?
 

Fatima

Member
Joined
May 31, 2020
Messages
23
Reason
DX FIBRO
Diagnosis
10/2019
Country
CA
State
ON
Your symptoms are all over the place, it sounds like it could be Fibromyalgia. I have been researching this illness and trying different things. I believe there is a strong correlation between digestive problems and fibromyalgia. My naturopath is currently working with me to improve digestive issues to see if we can improve the fibro symptoms. The generally recommended exercises are gentle, low impact. It takes time to find a balance and I feel you are always riding the wave, up and down with the pain, fatigue and fibro fog. Usually my fibro fog is worse when my fibro symptoms get worse.
Keep trying to get a diagnosis of your issues.
 

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hi, there! I totally agree with the fact that someone might need various examinations and visits until they are sure about the diagnosis. It took me almost 5 years to finally reach to fibro diagnosis just at that moment when I thought I was crazy since all examinations came out "clear" and most friends of mine thought that I was just a crock or lazy. Fibro has many symptoms but most of them are invisible and since all tests are clear including scans,blood tests and so on no one takes you seriously. However, after my diagnosis I felt relieved because it turned out I wasn't crazy at all. Especially in my country doctors even rheumatologists are unaware of this condition or they just don't believe it can happen because of lack of specific tests. I have to say that I was so lucky that I found an excellent neurologist after so many years and money spent on visits who helped me to find a rheumatologist who actually told me that I have most symptoms of fibromyalgia. So, be patient with this whole procedure cause it s the only way to be absolutely sure about this condition. Finally, as a newly-diagnosed I can assure you that psychotherapy or joining forums like this one play a major role in feeling better and help as much as you can other people sharing your experience. Thank you all because I was trying so hard to find a forum or a group online and I m glad that I found out this one. I feel less lonely!
 

kait0220

New member
Joined
May 28, 2020
Messages
3
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
VA
Thanks for all the kind words and advice guys! I'm just really frustrated because I feel like my doctor kind of gave up on me with the diagnosis. A neurologist I just went to was really rude and dismissive about my symptoms too...saying things like "you don't have any neurological symptoms" (because speech scanning and memory loss isn't neurological? Lol) and "well I see you're on an antidepressant but you don't seem depressed to me" (this made my therapist happy to hear)

Anyway, reading about fibro and reading other people's experiences just make me feel like it's not fibro. Maybe I'm in denial because it's such a hard disease to understand. I am afraid that if they stick with this, and I stop testing, that I could have another issue that goes untreated. How do you finally settle on a diagnosis that has no definitive test?
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Thanks for all the kind words and advice guys! I'm just really frustrated because I feel like my doctor kind of gave up on me with the diagnosis. A neurologist I just went to was really rude and dismissive about my symptoms too...saying things like "you don't have any neurological symptoms" (because speech scanning and memory loss isn't neurological? Lol) and "well I see you're on an antidepressant but you don't seem depressed to me" (this made my therapist happy to hear)

Anyway, reading about fibro and reading other people's experiences just make me feel like it's not fibro. Maybe I'm in denial because it's such a hard disease to understand. I am afraid that if they stick with this, and I stop testing, that I could have another issue that goes untreated. How do you finally settle on a diagnosis that has no definitive test?
Well, you don't have to settle for a diagnosis if you don't want to. but it sounds to me as if you need to see different professionals if you are going to continue with that because the ones you write about are abusive to you. Avoid them, they will only do you harm.

Here's my opinion, for what little it is worth. I don't think fibromyalgia is really one syndrome at all. I think that it is an umbrella term that they use and what it really means is "we don't know what the $%&* is wrong with you, but it's not these other things, so we will call it that".

The advantage to the diagnosis is that you can get treatment, medication, insurance will pay and so on. there's really no other advantage to getting the diagnosis except to tell people so that you can say why you can't do this or that today. What you don't want to do is exhaust yourself trying to find out if it is something else, and equally you don't want to accept the diagnosis as the death knell of your life. Do your own research and experimentation and see what you find.

I think eventually, if the human species lasts long enough, the medical professionals will find out that what they have been calling fibromyalgia is really this other thing and that other thing and something else, none of which are currently understood. Once those things are understood, they will have names. But right now we have to take what we get in 2020.
 
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