Omg that is some list!! Scary I hit almost every one. (all but last two) Frightening, but kind of clarifying. I might just print that off for the next person who asks whats wrong lol. Thanks for the info. It all helps doesn't it.
Good list. Counted 71. Wow. Yeah, when they ask how do you feel, just hand them a list. Here ya go doctor, pick a few of your favorites that you might know something about and we'll talk about them.
Yes I even had an argument with my doc last week about the fibro fogand a few other things. I asked him to explain / repeat himself because I couldn't keep up with his waffle, and he said "oh thats nothing to do with the fibromyalgia". Well I am sorry because the next patient had to wait an extra ten minutes. Ignorant pig!
allergic, You said it perfectly. If we don't advocate for ourselves, take some control of our care, we definitely fall through the cracks.
I was diagnosed with Fibro almost 20 years ago, and I worked for a Rheumatologist for many years. I've spent so many hours here, learning and listening to other members. But this list has some things on it that I never heard associated with Fibro, that I have, and never bothered to mention to the doctor, thinking they were not important enough to him to pursue, or just normal aging symptoms. I feel validated now!
Wow, this is an AMAZING list! I have SO MANY of the things listed. I had no idea they were related to fibro. Renie, THANK YOU for posting this list. I'm going to copy it and save it. I also suggest that a link to it be posted at the main fibro page, as it REALLY helps to know what's what with fibro.
I'm fascinated about the point regarding perception of color. My sister has ribbed me for a long time about how I can't tell green from blue, pink from purple, etc. In fact, I deliver meals to homes and when learning the route, I write down the color of the home so I can find it again. Well, guess what? When I return to the home, I often find that the color ISN'T what I initially wrote down. Sometimes I can't even figure out what the color is. It's like I'm losing the ability to distinguish shades of color.
So I ask, am I alone in this? Or do other fibro-ites have this issue too?
I think I hit almost every symptom there. I am goingtp print the list, highlight it in different colors that mean always, sometimes, rarely and never and take to my next few apps until all the docs have seen it. Or I can copy and paste if I get up the energy…
Petunia, I have problems with colors too, such as pink and red, orange and yellow and the various shades of blue and green- cant tell them apart. It is scary that my rheumie says that the numbness and tingling is not fi or related and the last neuro I saw said it was. Now we all know why I am going out of the area to see another specialist.
My rheumy didn't say if it was or wasn't fibro related, just referred me to a neurologist, saying it wasn't his specialty. I'm guessing a neuro would know best, given what my rheumy said. I think it's smart of you to go to another specialist out of the area. When I lived in Florida I NEVER could find a good doctor in my town; however, one town over had better doctors, and the Tampa/Clearwater area had much better ones. It really pays to travel, if necessary, in order to get a more qualified doctor. Right now I live north of a city and the care here is MUCH better than the western area of the city. I hope you get a definitive answer on the question, MBP.
I can't tell you how relieved I am to finally meet someone else who has trouble distinguishing certain colors! I think it is a form of color blindness but since it's so rare to have blue-yellow colorblindness rather than red-green, there is no test for it. Still, it's nice to know that SOMEONE else flounders around when confronted with these colors.
Ooh, good idea about highlighting the list and bringing it to the doctor. Keep a copy too!
My Husband told my Doctor that I lie and she swears to it. He told my other Doctor I was a crazy hypochondriac. Then, when I overheard him telling my youngest Son "your Mom is crazy" he soon became my EX!. That is a long list. I'll have to print it out too.
Anna, that is a GREAT reason to make him your ex! How horrible of him to say. I do understand people's confusion about this illness but to not try and understand it at all when you have a loved one with it is incomprehensible to me. To show no compassion at all to your family member is cruel.
I think it has something to do with the times we live in. Think about it; we grew up believing that we were invulnerable and almost God-like when it came to illness and mortality, unless someone close to us suffered or passed on. Modern science has taken us away from the reality of sudden illness and death much of the time, and we stuff truly ill people into hospitals or nursing homes. But in the not too distant past, illness and death were every day realities of life. You could be well one minute and struck down with TB the next, along with anyone else who you infected. People accepted that illness and death happened and showed more compassion to those suffering because they understood that it was a part of life. We've rather screwed ourselves with our modern mindset.
Petunia my Girl, do you sleep? Or are you a robot like me, who rarely closes her eyes? LOL!
Isn't this a great list? It came from Nikki in the UK, she's a brand new member, but is changing internet so she'll be offline for a few days. I've had Fibro for 20 years, worked for a Rheum for 12, and never heard of some of these things being related. After reading this, I realize i'm not crazy after all !
I have problems with colors, not so much as distinguishing between them, but looking at them online or the TV -- EVERYTHING is either too dark, or too light, I can't seem to see things or read things unless in very heavy black writing. I thought it was my eyes, nothing changed there. I kept blaming the computer, but it's the same one I've had for a few years, and this is recent symptom, so again, I feel validated by this list!
I have an intense "heat" sensation under my skin -- like a bad sunburn feeling, but inside the skin instead of the surface. ARGH!! I can't explain it !! Stupid fibro fog.......
Renie, I've heard other people say this as well, like you're on fire. It's probably an extension of the pins and needles and slight burning sensation or numbness some of the rest of us suffer. Neuropathy. I don't know why it happens tho and your version of it is really bizarre.
I do sleep but not well. Unrefreshing sleep, punctuated with pain. I'm sorry that your unable to sleep; God that must be awful! Everything feels 100 times worth with no sleep. God bless you for not being a raving B on here due to your lack of sleep.
I agree, it's a great list! I finally know what a lot of my problems stem from. Makes sense to connect it finally thru this list when you have pain in areas that you'd never associate with fibro.
Wow, that's weird about your vision! I know another fibro member mentioned seeing dark holes in her vision at night and only having periphery vision - only in the dark. I wonder if what you're experiencing is similar? Have you had your eyes checked to rule out any problem with them? Otherwise I would guess it's a problem with the signal being sent to the brain or the processing that takes place in the brain. Freaking weird, Renie. Have you googled your symptoms to see if others suffer from them? Might be worth doing, to try and find more info on the symptoms.
When you look at this list, you realize how far reaching and serious fibro is. If it isn't an auto-immune disease, I'll eat my hat. It most certainly seems to be a body wide illness. Now doctors need to find the culprit!
I've always had the tingling, numbness off and on all over, but the deep burn feeling is new. I know it goes with the territory, so I just acknowledge it and then accept it.
But what happens with us when we do think a new symptom is only from the Fibro, and it turns out to be something more serious, and we ignored it?
Good Question, Renie. I am afraid of that too. Like the chest/heart pains that I have seen described here and that I have also. It is very scary and always needs to be checked out. But how can we afford, money-wise, to keep going to the doc only to be told they can’t find anything wrong? On the other hand, how can we afford not to when our health, and possibly life, is at stake?