A number of unknowns in the process of diagnosis

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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.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,680
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Whatsherface, We are all here to talk openly about this, so you have found the right lace. Welcome. I hope that the forum will be helpful to you.
The symptoms you are describing certainly could be fibro, and if you have had enough tests to rule out all the other things that could be causing them (and there are quite a few) then you may end up with that diagnosis. Continuing to experiment with your diet may turn up more info, since it has already changed some things.
Basically, if you have fibro, you have to be your own advocate, your own scientist and laboratory and find out for yourself what helps you because no one thing works for everyone. We are here to make suggestions and offer support, and I hope your experience here is a good one.
 

Whatsherface

New member
Joined
Dec 19, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
00/0000
Country
NZ
Thank you for the reply to my huge info dump, and here goes some more, lol!
The medical system here in NZ has its moments of being pretty passable, but when dealing with 'invisible illnesses', there is a lot to wish for. I think that may be the universal experience though, and I've gone through 4 dr/GPs who just brushed me off. At least I finally found a dr/GP that thoroughly looked through my medical records and took the time to start the checklist, but acknowledged it is going to take some time, so is waiting for government funding to kick in next year for further testing.
What you're saying about experimentation and doing my own research is exactly what he said too, as there's so little verified studies and trials, hence why I'm here on his suggestion to bounce ideas off others in the same or similar boat. I also have migraines, PTSD and Major Depressive Disorder, so it sometimes is a chicken-egg scenario.
So far, I have these things that seem to work:
Ibuprofen 800mg slow release (for migraines or bad days)
"Normal" 400mg Ibuprofen
Paracetamol (but only effective when combined with either dosage of Ibuprofen, and I try and take all pain relief sparingly and only when I just can't cope)
Rizatriptan (works most of the time when I catch a migraine early, and also has the added side effect of helping my mood)
Metoclopramide 10mg (which is 'supposed' to help with nausea and safely boost the absorption and effect of pain relief, but I rarely use it, and it doesn't seem to have a noticeable effect as far as I can tell - I've only taken it on very bad days, and by then I've basically passed out in bed)
*I can't take antidepressants anymore as they've reversed function on me and either cause panic attacks or numbness, so I just cope with the roller coaster of despair and blasé acceptance.*
Supplements - up to 6 and slowly increasing: multivitamins, hair/skin/nail supplements, 5-HTP (careful with how I use it with the Rizatriptan, as I suspect there may be interactions), immunity support pre and pro biotics, high dosage horseradish and garlic, and of course vitamin C. I also have smoothies most mornings (due to nausea) with heaps of spinach/kale, and add in spirulina and omega 3, 6, 9 flaxseed oil. Along with having a totally plant based diet, walking about 45-50 mins in total a day to and from work and being on my feet in a 40 hour a week active job (early childhood kaiako/teacher), I get told so often "you're so GOOD!", but this is the small amount that I do to barely function, and I'm constantly on the look out for what may help more.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
807
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi - I can relate to a lot of your experiences and how you go about it, also vegetarian with reduced dairy. Different for me for instance is I'm struggling to get back to (similar) work or have to get up a lot at night. Meds, herbs and similar supps have not helped me, a lot have harmed, apart from arnica cream (Traumeel) for Pains under-skin, Marigold essence for on-skin, Gastritol for stomach/gut, Psillium & elimination diet for IBSD, Mediterranean diet for cardiovascular issues. The first thing that occurs to me is with my hyperacidity/dryness on inside and outside skin (and I hear you talking about extremely sensitive skin... ): I'd never tolerate horseradish, !!garlic or normal vitamin C (I use it puffered if nec), my stomach would burn like heck. Also I've learnt that we take in too much omega 6, so I concentrate on 3 (canola or flaxseed oil, or an omega 6-reduced mix, keeping sunflower seeds down, no oil any more). I've got my trauma, a bit of depression and especially anxiety down with quite a bit of CBT-style counseling over the decades.
 

Whatsherface

New member
Joined
Dec 19, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
00/0000
Country
NZ
That's so interesting you say hyperacidity with your skin, as I have always felt like my body is more acidic - to the point I feel like my natural body odor is 'vinegary'. Sometimes in hot weather or after exercise even my own sweat burns me. I also have oily skin though that also gets flakey and can crack/split (it can't make up its mind what it's doing, but at least I have few wrinkles for my age?). I can feel your pain with things that don't work though, as a number of things that I put on my skin or ingest will either react straight away, or over time I'll build up a resistance or they'll flip on me to cause a reaction. I'm wary of medications, but the more simple and natural a product is, the more likely it seems to be safe for me for now. So I'm lucky with the supplements at least, even if they don't have a huge effect, at least it's something and not harming me at the moment.
 
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