A polite whine

[JenF]

Hey all! I'm new here

(long post - I'm so sorry! You can skip it all and go to the bottom if you have answers or advice lol)

My first post is just me being super frustrated and needing to share/vent with people who 'get it'. I'll keep this long story way shorter than I want to though lol
Basically, my mother, two aunts, gramma, and a cousin (all on maternal side) have fibro. I've been told by two specialists and fam. dr. that I probably do as well (none of them want to commit to the word!)

Off and on for years, I used to flare up for a day or two, a few times a year. Then a couple years ago I'd get 5 to 7 days in a row sometimes and that was awful.
THEN I got a major bug of some sort december 2018. Then January 1st 2019 I woke up with a flare.

It never went away. By May I was beside myself. I got into an internist and we did a bunch of tests (obviously blood, a CT, MRI, scopes in both ends etc). In the end it was "probably fibro" and they put me on Amitriptyline. After the main side effects dissipated, I was in heaven. It gave me back about 80% of myself!!
Fast forward to a couple months ago and my heart started being weirder than usual - like ... really scary stuff. Turns out it was the meds... so I've had to stop taking them a couple weeks ago and now all my symptoms are back with vengeance!

I'm so .. mad. Mad and sad... I'm trying to come to terms with the fact that this is just how it's going to be now.

I'm still working (no choice - have to pay off student loan debt from years ago).. but my symptoms are there the second I open eyes and do not let up through the whole day. I'm not depressed but the feeling of the symptoms make it feel like I want to cry all the time. I fight that urge almost every moment I am awake. I literally push myself until I go to bed. Only my husband knows all that though - because I've become VERY good at 'faking it' in public. I can smile and laugh right up to my eyes and make it look legit. But it's not. Not at all.

I've ordered some stuff to help with certain pains (like a roller ball and another gadget, cold patches for the headaches) and I'm considering going out to get a high CBD, very low THC thing tomorrow too (I live in Ontario Canada - it's legal. I've not tried anything pot related since I was a teen and I'm in my mid 40's lol)- because I HAVE to find a way to function as work is coming into the craziest part of the year). And I'm going to get back into some meditative yoga (that did help a bit before the meds). I'm desperate and trying my best not to succumb to the overwhelming feeling this set back is causing)

I've left a lot of info out that might help you understand my situation better (because this is LONG ENOUGH LOL). But I'm happy to answer anything.
My question is: are there others who can't take meds? (This was my only choice so far ... I can't take most or all of the others because of other medical issues/sensitivities). If there are those of you who also can't - what are your go to things to feel better? Even just short term stuff that helps? And if you are able to take meds, I know they don't always 'fix' everything either - so do you have things you do to help as well?

And most of all - if any of you are in Ontario Canada, do you know of people here who specialize in this? I see some great stuff in Michigan etc, but there must be someone here, right? please? LOL

I'm so sorry for the ramble ... I hate taking up so much space and time, but if you've read this and you have any tips or even just encouragement, I'll happily take it. HUGS! Thank you so much for reading.

 

[JayCS]

Hey Jen - glad you took a look in here and no problem writing a small part of what is tearing you up at the moment.
I'm one of the ones you're asking for, not being able to take any meds - sunkacola is similar, so watch for her great advice overview.
My 4-month-Amitriptyline-story is: no pain-help, but sleep a bit. Then I realized more and more adverse effects, from 5 to then 8, so I had to stop. But I had got my sleep just as good without. CBD just made me tired, I'm waiting for MMJ, but might not take it. Have a look at all my other posts if you're prepared to implement non-med stuff and gladly ask back. In short I've got the pains down pretty much to zero, using stuff like you are, but the Ache and exhaustibility, despite a great help thru cryotherapy & acupressure, cold showers & breath-holding, is making me struggle to start working again from Monday, 2 hours a day, after 10 months. Luckily I'm OK with not working any more, I've done/helped people enough for a lifetime... Ask more if you like...

 

[sunkacola]

Hi JenF, welcome to the forum. I completely empathize with the situation you are in, and am glad you showed up here so we can support you. You ask for suggestions of things you can do and I wrote a whole post on all of the things I have tried and have found help, so reading that and trying some or all of those things might be a good place for you to start. The main thing for me is to recognize that this is a systemic thing, and won't be helped one bit by treating it symptomatically. You have to treat the whole body/mind organism. there's no cure I know of but you can, with effort and practice, manage your symptoms so well that you can live an almost normal life.

I went from being unable to get out of bed without opiate pain medicine to being able to live pretty normally, and the only thing anyone else would notice is that sometimes I have to cancel plans I have made if that day's flare is too bad. I still have chronic pain but it doesn't rule my life and that's the main thing.

You say you push yourself all day and I want to suggest that might not be the best approach. I did that for years, and led to pretty much a collapse. These days I pace myself, plan my activities so I don't ask too much of my body in one day, and take rests as needed. I used to clean the house in one super rapid whirlwind. Now it may take half the day or even all day, taking rests when I need to, for example. I also hide what I am going through from everyone around me, so rarely does anyone know I am in pain. This is my nature, as it seems to be yours, but it can backfire on a person, so take care with that.

Here is my post. Ask any questions you like. We are here to help!

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[JenF]

Thank you

 

[sunkacola]

You're welcome. I hope it helps you in some way.