Whatsherface
New member
- Joined
- Dec 19, 2020
- Messages
- 7
- Reason
- DX FIBRO
- Diagnosis
- 00/0000
- Country
- NZ
Hi,
I'm brand new here, but posting to just try and get a bit of perspective, guidance and advice from those with more experience, as this seems to be an illness that still so many seem to know so little about (or don't even believe it exists).
Long read ahead, my apologies in advance:
So I'm still in the process of getting diagnosed, although my dr/GP is pretty certain I have fibro. I was going to get x rays to check for joint damage before he confirmed it, but with the backlog in the medical system it may be a while. I met almost all the criteria, but with some inconsistency on the pain points (although funnily enough today I am sure feeling some of them!), and I have other issues which I'm not sure are related.
I have widespread pain, joint stiffness, I pretty much constantly feel like I have a low grade viral illness even when I know I don't, am also prone to getting very sick very easily, etc. I also was born with clicky hips, I have weak joints (never dislocated them YET, but it frequently feels like it may be a possibility, and I can get a bit off balance, feel a bit wobbly and roll my ankles quite easily), and sometimes when trying to run, exercise or even walk, my hip and/or knee joints can "collapse" or not work on me.
I also have tender skin that easily bruises, and this seems to be getting worse, with just this month a few minor bumps leading to grazing, cuts and in some cases my skin peeling off. I can't even wear my well worn in shoes as the backs of my heels blistered and peeled off, and even after switching to slides that are basically like slippers, the soft fabric even causes mild chafing and grazing on the top of my feet and my heels have multiple cracks and splits within 24 hours for no reason (I have been wearing these for a few months and my heels just cracked open for no reason I can figure out).
I also have hayfever symptoms with constant fluid in my upper respiratory tract and what sounds like a smoker's cough (a little concerning in these times, but I assure you, I got checked out for concerns and pretty safe in New Zealand).
I get migraines about once a month and they seem to be hormonally, stress and weather related, made worse if I don't take care of myself. I'm light sensitive, touch sensitive (likely trauma related though), and had to cut out all dairy and animal products to try and heal my gastric system. It's been fairly effective, but I still have some issues, and my skin is better, but I still get minor rashes, peeling and breakouts (maybe perimenopausal).
And I'm always SO FREAKING TIRED, yet I can also get wired just before I try to go to sleep, and even though I can fall asleep quickly I never seem to feel like I've deeply rested and wake up SO stiff and sore (like I've done a full on intensive workout while I was sleeping, and also aged about 30 years at the same time). I loosen up as the day progresses to then become body-exhausted-tired like I'm dragging around lead weights, but I can't rest as I feel so sore I have to keep moving or doing something to take my mind off it.
I've had so many blood tests to check for everything from heightened white blood cell counts, thyroid issues, rheumatoid arthritis, some cancers, etc, but I came back "a picture of health", with only one minor blip of an abnormal result which as nothing else was elevated it meant nothing. I have had glandular fever/mono many years back, and it has recurred a few times (even though I was told that it can't do that, apparently it can).
So if you've read through this novella, thank you, lol! I guess I just wanted feedback as to if these symptoms (and I'm always feeling like new things are cropping up) are part of fibro, if something doesn't fit, and any advice as to how to help and some commiseration. Even though I know what I'm feeling and how my body shows it, as it's barely talked about and sometimes not even believed in, you feel a bit like a hypochondriac or as if it's all in your head sometimes. It would be good to find somewhere to openly talk about this, especially as it seems to be getting worse.
So thank you for your time.
I'm brand new here, but posting to just try and get a bit of perspective, guidance and advice from those with more experience, as this seems to be an illness that still so many seem to know so little about (or don't even believe it exists).
Long read ahead, my apologies in advance:
So I'm still in the process of getting diagnosed, although my dr/GP is pretty certain I have fibro. I was going to get x rays to check for joint damage before he confirmed it, but with the backlog in the medical system it may be a while. I met almost all the criteria, but with some inconsistency on the pain points (although funnily enough today I am sure feeling some of them!), and I have other issues which I'm not sure are related.
I have widespread pain, joint stiffness, I pretty much constantly feel like I have a low grade viral illness even when I know I don't, am also prone to getting very sick very easily, etc. I also was born with clicky hips, I have weak joints (never dislocated them YET, but it frequently feels like it may be a possibility, and I can get a bit off balance, feel a bit wobbly and roll my ankles quite easily), and sometimes when trying to run, exercise or even walk, my hip and/or knee joints can "collapse" or not work on me.
I also have tender skin that easily bruises, and this seems to be getting worse, with just this month a few minor bumps leading to grazing, cuts and in some cases my skin peeling off. I can't even wear my well worn in shoes as the backs of my heels blistered and peeled off, and even after switching to slides that are basically like slippers, the soft fabric even causes mild chafing and grazing on the top of my feet and my heels have multiple cracks and splits within 24 hours for no reason (I have been wearing these for a few months and my heels just cracked open for no reason I can figure out).
I also have hayfever symptoms with constant fluid in my upper respiratory tract and what sounds like a smoker's cough (a little concerning in these times, but I assure you, I got checked out for concerns and pretty safe in New Zealand).
I get migraines about once a month and they seem to be hormonally, stress and weather related, made worse if I don't take care of myself. I'm light sensitive, touch sensitive (likely trauma related though), and had to cut out all dairy and animal products to try and heal my gastric system. It's been fairly effective, but I still have some issues, and my skin is better, but I still get minor rashes, peeling and breakouts (maybe perimenopausal).
And I'm always SO FREAKING TIRED, yet I can also get wired just before I try to go to sleep, and even though I can fall asleep quickly I never seem to feel like I've deeply rested and wake up SO stiff and sore (like I've done a full on intensive workout while I was sleeping, and also aged about 30 years at the same time). I loosen up as the day progresses to then become body-exhausted-tired like I'm dragging around lead weights, but I can't rest as I feel so sore I have to keep moving or doing something to take my mind off it.
I've had so many blood tests to check for everything from heightened white blood cell counts, thyroid issues, rheumatoid arthritis, some cancers, etc, but I came back "a picture of health", with only one minor blip of an abnormal result which as nothing else was elevated it meant nothing. I have had glandular fever/mono many years back, and it has recurred a few times (even though I was told that it can't do that, apparently it can).
So if you've read through this novella, thank you, lol! I guess I just wanted feedback as to if these symptoms (and I'm always feeling like new things are cropping up) are part of fibro, if something doesn't fit, and any advice as to how to help and some commiseration. Even though I know what I'm feeling and how my body shows it, as it's barely talked about and sometimes not even believed in, you feel a bit like a hypochondriac or as if it's all in your head sometimes. It would be good to find somewhere to openly talk about this, especially as it seems to be getting worse.
So thank you for your time.