Hello

[Caylee]

I think it would be best if I just copy what I've said in the little bio blurb...

Hi there
I am one of the first Canadians to be legally diagnosed with FM. So I am very old in FM years. Lol And I've seen it all. I think.

The reason I am here however, is that in the last several years, I've been too sick to really keep up. So I'm mostly out of the loop now.

If I could find any inspiration or help, or gain any new knowledge, it might help me. I've been feeling a little lost lately. My friends are still my friends, but at some point it changes to only social media and I understand that life goes on. This has been very hard on this ex-social butterfly.

I've also moved in the last year for my health. We left Ottawa to a more sedate rural, and cleaner, lifestyle. While some things have improved, others not so much.

At present, I am in bed (usually sleeping) for maybe 5 out of 10 days. There are also other existing condotions that don't help either. My lower back is a miasma of problems, and I have arthritis.

I know I'm not alone in this and sometimes I just need to connect with others that understand. If I have learned anything from all of this, is that folks don't really have a clue as to how disabling FM can be.

 

[JayCS]

Hi Caylee and welcome - nice to "meet" you! Hope we can be of help and support to you.
Your lower back doesn't sound funny, something we of course often have, me too.
Doesn't sound as if you have any specific questions yet, but are reading around a lot.
So @sunkacola's Big Advice Post will probably be bringing coals to Newcastle.
Rather that you'll be able to share further your experiences - giving, taking and interacting...

 

[sweetkamie20]

I think it would be best if I just copy what I've said in the little bio blurb...

Hi there
I am one of the first Canadians to be legally diagnosed with FM. So I am very old in FM years. Lol And I've seen it all. I think.

Lets hope, right?!

The reason I am here however, is that in the last several years, I've been too sick to really keep up. So I'm mostly out of the loop now.

If I could find any inspiration or help, or gain any new knowledge, it might help me.

I don't have much knowledge (you could teach me a lot), but if making light of things is attractive to you I hope you check out this thread Memes: A Touch of Humor for Us Fibromites

I know I'm not alone in this and sometimes I just need to connect with others that understand. If I have learned anything from all of this, is that folks don't really have a clue as to how disabling FM can be.

No, they don't I'm so grateful I found people that do understand because it is a very lonely, surreal thing when you're in a severe flare. Just to have the people here say, "Yeah, it makes sense to me why you're laid up most of the day," takes some sting out I dare say I'm not sure there's a group of more empathetic and encouraging people to be found.

Glad you're here! If you've got any tips for me (newbie) I'm all ears!

 

[sunkacola]

If I could find any inspiration or help, or gain any new knowledge, it might help me.

In case Jay has overstated and it is not bringing coals to Newcastle I suggest you read my advice post and see if there is anything that that might help.
I also have back issues of various kinds, and arthritis in some parts of my body, so I can relate to some of your problems. We are here to support you and help you if we can, and offer you our experience.

The first thing I am wondering is if it would be possible for you to get up and do a little tiny bit of exercise or activity, even if just walking around your house, every day. Starting very small, you can build up and it will help most people if they can do this. If at all possible, do this outside, because staying in and in bed a lot of the time only causes an individual to go down a bad spiral both physically and mentally. If you are already doing this, great! Just thought I would mention it because I think it is one of the most important things a person with FM can do. I know what a difference it made for me when I started doing that daily even though at first I didn't feel as if I could.

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

 

[cookiebaker]

Hi Caylee, and welcome!

I too have back (and neck) problems related to arthritis - just had a 2nd radio-frequency ablation done on L3,4,5 to try to help the pain there. I am still in the "healing" stage at the moment, but have to agree that getting up and moving does help a little.

i have never been much of a "social butterfly" but yes, it does get pretty lonely at times.. People you used to talk with daily have drifted away and gone on with their lives.
When Covid hit & the "stay home" mandates came out, i stayed home - mainly because of COPD... it was at this time that anxiety took over for me, and i became a bit of a recluse. Still am to be honest.. I go out for my doctor & PT appointments, and to pick up groceries that were ordered online, but that is pretty much it.

sunkacola has some great info in that post... hopefully you can find some ideas there to help you.

 

[Caylee]

Thank you all for your time in responding. It's much appreciated.

Today is a bad day. Idiot me forgot to take my nighttime meds. So no sleep and much pain. *insert me banging my head on my desk lol*

Unfortunately, I'm on a lot of (to me) opiods. But thats for my back. Prior to that I took Wellbutrin and now Trintalex for fm. Neither seemed to work well. As for the opiods it would be so nice if I could cut them out altogether but my back says not a chance.

There seem to be some new medications I see. And it's confusing to say the least. But a historian so research is something I enjoy. One site that I do like is the Mayo clinic. But I've got a problem that I need to overcome. Somehow.

In 2018 my gp and I decided to stop the Trintalex. And boy, did I discover a whole new lifestyle. Up until then, I was doing pretty good, but that all changed. I followed his instructions for weaning off of this drug, but things got really bad.

Long story short, I ended up hospitalized 3 months after going off of it, and I was immediately put back on it. sigh I wasn't "right" for 6 months after. the shakes were the worst. I lost almost all my hair (my eyelashes grew in backwards lol), my teeth and skin still haven't recovered and I sleep a lot more now. It's like always being in fibroflare.

Apparently the doctor told me that I was one in a billion that would react that badly to stopping this drug. He compared it to a heroin withdrawal, except it lasted 3 months instead of 72 hours! That in itself has made me extremely wary of medication. I hate that drug and what it's done.

Lonely. Yes, so much so. But I know I'm not alone. Not that that helps, but I still keep reminding myself.

For the last 25 years my life and extended family has been a historical society. We don't re-enact like others do. We re-create. Using primary sources (manuscripts, art, archaeological finds, etc), we create a persona and delve into the areas of the middle ages. It's like a bunch of hobbies rolled into one! My focus was archery, equestrian and the culinary arts. I can't do those things anymore, but I do still do research. I do occasionally travel to speaking engagements, but it's rare now. Thing is, most of my friends are connected to this group. But we live all over North America, so I don't see them much anymore as I can't camp. Our events would take place, usually over a weekend, and sometimes day events. But we all travelled to these. My heart breaks sometimes if I start over thinking it.

A really good group that's international, with thousands of members from all walks of life. So theres always been tolerance for all. Religion is the one thing we mostly avoid in the actual day to day playing. Which is weird considering how christian based Europe was at that time. It works though.

Anyway I'm babbling now. I'm going to reread what you have said, and again, thank you. I now have a jumping off point.
❤✌

 

[Caylee]

I should note that the historical society I belong to is the SCA. Society for Creative Anachronism. We're over 55 years old and presently have 30,000 members globally. If you'd like to read about it.

 

[sweetkamie20]

Apparently the doctor told me that I was one in a billion that would react that badly to stopping this drug. He compared it to a heroin withdrawal, except it lasted 3 months instead of 72 hours! That in itself has made me extremely wary of medication. I hate that drug and what it's done.

I've had those "1 in a billion" reactions to a few drugs. Sadly, they aren't 1/billion. Just grossly underreported or marginalized. Askapatient is an amazing resource when looking strictly at real people's experiences with each drug. I go there to see the 1 in a billion reactions as well as the good...

For the last 25 years my life and extended family has been a historical society. We don't re-enact like others do. We re-create. Using primary sources (manuscripts, art, archaeological finds, etc), we create a persona and delve into the areas of the middle ages. It's like a bunch of hobbies rolled into one! My focus was archery, equestrian and the culinary arts. I can't do those things anymore, but I do still do research

How fascinating and enthralling. It must be easy to get swept up into it all .

For someone with your interests, passion, and intellectual hunger I can't more highly recommend author James Michener. He's all about rich historical fiction. Generally, each book is set in one specific place in the world (Poland, Hawaii, etc etc etc). His writing will pique your imagination and transport you there if you are keen for detail and don't mind exercising your intellect. (You will probably find him easier to follow than I do. I found myself rereading some portions due to the extensive but worthwhile details.).

My heart breaks sometimes if I start over thinking it.

. Those are tough thoughts to lay to rest...

Warm thoughts from Florida, Caylee

 

[JayCS]

Askapatient is an amazing resource when looking strictly at real people's experiences with each drug. I go there to see the 1 in a billion reactions as well as the good...

Wow, thanks for that resource. ! Didn't know it and was immediately surprised about the seeming quality. Looking their approach and quality criteria up under "About" and comparing with my experiences I agree the reviews do appear very balanced. It's US/FDA oriented, so an opiate used only in Europe isn't listed. "Tops 10 reasons for taking it" and "top 20 side effects" as well as the ratings are all fully realistic. No supps, but jabs.
Main caveat for not looking at it before you try something is if you've noticed you are susceptible to the nocebo effect, i.e. you'll get side effects by seeing them before. My experience is that I am not at all. For all the many meds and supps I got side effects from without knowing beforehand I would have done better knowing that beforehand, and docs gave me stuff that caused seizures without warning me.
Main thing for me with askapatient is that they only list 20 side effects in their analyses/summaries, which means they're actually not 1 in a billion reactions, more like one in 1000. To get those you have to read each single review or if you're looking for a specific reaction scan the pages for that... For amitriptyline/(ex-Elavil/ex-Endep) there are >600 reviews, spread over the various product names.
And like you sweetkamie I get some of the common side effects but also some very rare ones, e.g. they don't have seizures on the amitriptyline list. So for those I need to read up the product sheet and do specific searches on several sites including forums anyway. But askapatient is a great orientation.

 

[cookiebaker]

if you want to know "all" the side effects of something, the website drugs(dot)com can be invaluable..
they list things in groups.. most common, occasional, rare.. something like that.

my doc had me on gabapentin for a while for peripheral neuropathy... we gradually increased the dosage to the point it was literally exhausting me... looked it up and yes, extreme fatigue is one of the side effects. I know it was bad because my partner even said i was looking "rough".
was weaned off of that, about a month later we tried nortriptyline - that gave me tremors...

right now, the only med i take is an anti-anxiety - sertraline, and only a 100mg dose/day - higher caused problems.

 

[JayCS]

drugs(dot)com can be invaluable

Yep, that's the one I often look at: How common is exactly like the product leaflets...
but the grouping according to symptom area, like "dermatologic", is praps better than those, at least our product leaflets aren't grouped like that.
And definitely easier to read than the small compressed print on paper!

 

[cookiebaker]

And definitely easier to read than the small compressed print on paper!

without a doubt!!
I need a 10x magnifier to read those silly things.

 

[sweetkamie20]

It's US/FDA oriented, so an opiate used only in Europe isn't listed.

Bummer!!!

Main caveat for not looking at it before you try something is if you've noticed you are susceptible to the nocebo effect, i.e. you'll get side effects by seeing them before. My experience is that I am not at all.

I, like you, don't have the nocebo effect.

For all the many meds and supps I got side effects from without knowing beforehand I would have done better knowing that beforehand, and docs gave me stuff that caused seizures without warning me.

I feel you . I am sad to say I distrust all authority figures in every field- pharma, mainstream media, government institutions are the ones I have direct experience with. I won't go into it here for everyone's sake.

Main thing for me with askapatient is that they only list 20 side effects in their analyses/summaries, which means they're actually not 1 in a billion reactions, more like one in 1000.

Lol yeah 1 in a billion is a hyperbole. That'd be about 1/7 people in the world.

To get those you have to read each single review or if you're looking for a specific reaction scan the pages for that...

Thats what I do - read each review until I am satisfied.

For amitriptyline/(ex-Elavil/ex-Endep) there are >600 reviews, spread over the various product names.
And like you sweetkamie I get some of the common side effects but also some very rare ones, e.g. they don't have seizures on the amitriptyline list. So for those I need to read up the product sheet

Our product sheets are pretty well incomplete or a list of EVERY possible side effect known to man. It's like they copy and paste it all.

I onky glance over the listed common/rare side effects because my negative side effects rarely show up on those lists :laugh: for instance, anaphylaxis for a non-psychotropic med (epipens suuuucccckkk), for psychotropic: Baker-Actable state which decade later they admitted was a potential side effect), Keppra Rage (it was actually rage and uncontrollable and random crying)...A serrapeptase supplement even led to getting stuck in an aura/pre-seizure state (my husband pointed it out)! Another multi-supplement made me stumble around and essentially black out - so many different ingredients in it I don't know what caused it. I tried Marijuana (it's legal for medicinal purposes) and I felt like my mind was going to break or separate from my spirit.

The reactions are just so extreme that if I try anything it is a huge deal. Desperation used to be the impetus for me trying something new. With the antihistamine I am taking, my system is a lot more balanced so I am more comfortable trying combinations of things, etc.

and do specific searches on several sites including forums anyway. But askapatient is a great orientation.

Do the sites include American drugs?

 

[JayCS]

A serrapeptase supplement even led to getting stuck in an aura/pre-seizure state

High dosed serrapeptase seemed a bit of miracle once or twice, but that was it... nothing else ever.
Yeah I think I know how getting stuck in an aura feels. I spose I had that when I was younger. I can't remember when I actually started getting seizures. But I can remember regular much longer episodes than my seizures now where I sort of dissociated from my senses, my head went all wonky, slightly dizzy, and I started questioning words, where I am, my whole life. I always thought it was Hamlet-type puberty sensitivity. But it was exactly the same wonky- & dizziness as now my seizure auras....

The reactions are just so extreme that if I try anything it is a huge deal. Desperation used to be the impetus for me trying something new. With the antihistamine I am taking, my system is a lot more balanced so I am more comfortable trying combinations of things, etc.

Ha, when I read your descriptions I think: Wow. Then I think about my own reactions & descriptions in comparison and I think: Ah, of course, me too.

Do the sites include American drugs?

Mainly American sites and American drugs actually, so I have to "translate" the trade names, usually by switching the wikipedia language. But off all meds for quite a time now I only do that for others. For supps I have one fairly good German site and one brilliant extremely detailed one incl. side effects. pen

 

[sweetkamie20]

For supps I have one fairly good German site and one brilliant extremely detailed one incl. side effects. pen

Is the site in German?