Fibro The fun filled world of fibro

[Freida]

Since there are so many of us around here with fibro I thought we could use a thread to talk about treatments and stressors and stupid people and medications and spoons and blah blah.

Hows that for a supportive start?! :laugh:

I'm curious to hear from people who are using cymbalta, lyrica or gabapentin. My doc isn't a fan of those for people with ptsd because the suicide risk is too high for her comfort level. But I'm getting worse right now (too much stress in the life and world) so I'm wondering if anyone has had success with them?

 

[Deleted member 47099]

Good idea!

As you know, I have fibro too, but I'm a total idiot about looking after it. Apart from trying to ignore it, I do basically nothing at all...? :facepalm:

Hope you get some more useful replies :laugh:

I'll be reading along :)

 

[whiteraven]

I'm curious to hear from people who are using cymbalta, lyrica or gabapentin. My doc isn't a fan of those for people with ptsd because the suicide risk is too high for her comfort level. But I'm getting worse right now (too much stress in the life and world) so I'm wondering if anyone has had success with them?

I have been thinking about this the last few days. Great minds, they say...LOL

I was on gabapentin (for seizures and the pain of occipital neuralgia) and it had absolutely no effect on my other pain. The gabapentin really screwed with my memory, so I stopped it.

My friend was on lyrica and it nearly killed her. Something to do with her sleep. I was on cymbalta a number of years ago for depression and have no idea if it helped the pain. LOL I have been reconsidering Cymbalta, but after my doctor gave all my info to a doctor I wasn't seeing, I decided not to get into that with him.

I did not notice any sort of a lean toward suicidal thinking on any of them.

I have also noticed my fibro (I actually was never officially diagnosed; I think I have both fibro and chronic myofascial pain) and chronic pain is much worse these days. Makes everything else worse, doesn't it?

 

[Freida]

Makes everything else worse, doesn't it?

Yep :( Between the America drama and the weird weather we are having I've been pretty much toast.

I got an acupressure mat (LOL I"m a sucker for trying everything!) a couple weeks ago I'm cautiously optimist it might be helping. I use a foam roller and that has been helpful so I was hopeful about this. Funniest part -- the first 5 reviews were from fibro patients who loved it...and everyone of them said that the first few times you use it you will wonder wth you were thinking. But to tough it out because it gets easier. They were right!

 

[Deleted member 47099]

I have an acupressure mat too and I looooooooove it.

I may have forgotten to use it in months tho... cos umm self-care... how do you spell that again...? :whistling::rolleyes:

Thanks for the reminder :)

 

[Ronin]

I was almost diagnosed with that :happy: Cracks me up because a reminder of times I went to docs with more stuff instead of where I at now with that.

Cough, no experience with these 3 ADs. But I def noticed some of the ADs just f*ck up pain & tiredness & suicidality bc pain and all over bad juju worse (or: Mirzaten with Effexor are my good Nope. No way in hell. The only up side being how mess that got me led me to that dx trial and getting a GP on it.)

Self care, sleep schedule, swimming, not over exertion (ya... about that.), massages & acu.

And Taking the bloody painkillers :shifty: ... that I also stellar fail at.

@Sophy (in lockdown) Shelf car. *wise nod*

... spellchecker told me!

 

[Deleted member 47099]

@Sophy (in lockdown) Shelf car. *wise nod*

... spellchecker told me!

:roflmao:

 

[blackemerald1]

Thanks for the thread @Freida - good idea.

Officially I was diagnosed with Fibromyalgia twenty-five years ago. ugh... :rolleyes: At the time I was given a lot of sympathy and not much help. Other doctors I was sent to by my employer dx'd chronic fatigue and other sort of related disorders. But they were talking rubbish and their opinions didn't stand up to further scrutiny.

Because there was so much speculation I was eventually told to go to a specialist physician.. idk what the equivalent is o/s. A very learned medicine man?? Anyway he confirmed Fibro.

Treatment was almost exclusively about pain reduction, preserving movement & fitness. Most of my pain was centred around my sternum and still is in terms of fibro. I looked at getting the nerves that were thought to be responsible for carrying the pain cut. Fortunately other patients had beat me to it, done it and sadly developed phantom pain. It did work initially in a few cases but generally not long term. So discarded that idea.

So, since then I've remained addicted to swimming, exercise in general, flexibility and pain reduction.

I've found fibro is very similar to ptsd in the respect that if I ignore myself, disregard my self-care & don't do the right thing it rears up & bites me. Then it takes many months to quieten it all down again.

I was and still am on Lyrica. I've had an on again, off again relationship with it. lol... But on probably what would be considered a low dose, 25 mg or 50 mg if needed. It helps me with my anxiety too btw. It helps with the pain though doesn't entirely eliminate it.

Lyrica can definitely make me a basket case if I take too much. It was prescribed for something else at one stage so I took higher doses. What a mistake! Bloody doctors ugh... But these days my fibro pain and I are old enemies and I know it well.

I've never experienced an uptick in suicide issues with taking such a low dose but then idk.. how one is supposed to measure that bc it can be cyclic itself too?

Lyrica has come under the spot-light by our authorities since other drugs have been restricted. Apparently it's become the go to alternative for druggies. So there are lots of warnings about it now and it isn't being thrown out to the masses like lollies anymore. That's probably a good thing. I suppose next they'll ban it altogether? :cautious: :oops:

 

[Freida]

As you know, I have fibro too, but I'm a total idiot about looking after it. Apart from trying to ignore it, I do basically nothing at all...? :facepalm:

yea..... It took me YEARS to get on board with the idea that I was going to have to deal with it whether I wanted to or not

Because I learned this ...... :laugh:

I've found fibro is very similar to ptsd in the respect that if I ignore myself, disregard my self-care & don't do the right thing it rears up & bites me. Then it takes many months to quieten it all down again.

I suppose next they'll ban it altogether?

funny how it works that way huh?

 

[Tornadic Thoughts]

After years of being diagnosed with severe chronic fatigue, severe osteoarthritis, severe depression, severe IBS, severe adhd, severe anxiety, severe this and severe that, and being prescribed an arm's length list of various meds that kept making symptoms/side effects worse instead of offering any substantial relief, my doc finally said that it's "very likely" I have fibro, but since there's no test or ways to actually prove/diagnose it and/or proven ways to successfully treat it, that's about all she could say. Gee, thanks.

I was given the option to keep trying different meds for pain and such, but by that time, my body couldn't take being a guinea pig anymore. My health was rapidly declining with each attempt to make things better via their suggestions. I had crossed paths in the community with someone willing to offer acupuncture treatments, another willing to provide massage therapy, and I was willing to try anything non-medication related out of desperation.

Meanwhile, I learned more about my fascia, my lymph system, my digestive system, dove into learning about herbal concoctions and their benefits, discovered that the fragranced/scented products I was using were causing major health problems no one had ever mentioned as potentially being a problem (a.k.a. chemical shit storms being constantly absorbed via skin/respiratory system and wrecking multiple other body systems - epseically the endocrine system), learned more about everything I put in, around, or on my body, and found a good chiropractor who helped tremendously.

In the midst of all that, I had an ER visit for gall bladder issues (didn't require surgery) that prompted an overnight drastic change in what I consumed daily. I had long since already given up factory-farmed animal products and only ate local meats, cheeses, eggs, etc. that were "grass-fed", "free-range", "humanely raised and killed", etc., etc. But after that medical intervention, I chose to give up all meat, dairy, eggs, gluten, caffeine, alcohol, and as much highly processed "food" as possible rather than continue with my choices and end up under the knife to lose an organ. If I was born with it, it most likely serves a purpose and I'd prefer to keep it if at all possible.

I felt more relief in my overall health and well-being from that drastic change (eventually - as the transition wasn't always pleasant) than I ever had via any other methods I'd tried up until that point. I shed a whole lot of weight that was making things like pain much worse, I was no longer absorbing the energies/adrenaline from the beings that were being killed, no longer causing gut grenades that prompted the supposed IBS issues via food combining mishaps, reduced inflammatory responses to things my body shouldn't be ingesting in the first place regardless of what the commercials and industrial marketing attempts say, and built up my immune system to where I was no longer suffering from frequent colds/stomach issues/bronchitis bouts/skin issues/dental issues/etc/etc.

I still suffer from pain, some days worse than others. I still have to manage my energy account very mindfully, most especially on the "good" days. I still suffer from stress just as much physically as I do mentally at times. I still feel overwhelmed at times.

I put some of those lost pounds back on after my mom passed as I curled up in the depths of the grief, not much wanting to care for myself at the level I had been because I felt like I had let her down and didn't do enough to try to help keep her alive. Whew. Still digging out of that ditch. I still eat my emotions more often than I'd like.

But I no longer feel like I'm chasing my tail via doctor's shot-in-the-dark responses to my multiple pleas for help and having my health unravel even more because of side effects of the various pharmaceutical suggestions my body can't jive with. I still get looked at as if I'm crazy/dishonest by medical professionals when I explain how sensitive my body is to the medications and typical shots and such that most can take with no problem. That's one of many reasons I steer clear of them as much as possible.

I still do acupuncture sessions every couple months, or sooner if I feel I need it. The overall effects of relief, mentally and physically as a result are priceless. I still do massage therapy monthly (except for the last 2 thanks to covid), I visit a myofascial therapy/craniosacral therapy practitioner every few months. I've done a couple different kinds of physical therapy, with the counterstrain technique being the most helpful.

I have a chiro that helps greatly whenever I need it - not the typical pop and crack scene. I stretch each day before I get out of bed. I take lots of magnesium flakes baths/foot soaks/use the gel and make my own spray. I supplement my whole food plant-based mostly vegan diet with CBD tincture, D3, a multi, a probiotic, C, and zinc. I need the sun, too. I'm definitely a solar-powered being.

I use topical CBD massage oil for painful areas and all over when I get massage therapy. Arnica oil is added to the topical mix for extreme pain days. Some days I just need to rest and not exert my brain or my body, and I'm finally okay with that, although my brain still tends to argue at times. I let myself feel the things I used to hide from, or try to stay busy enough to keep myself distracted from, and connect with nature more often than not to release the feelings of yuckness and become grounded again.

I have to make myself move in some purposeful way every day, and it has to be fun/pleasurable, or my entire being rebels and refuses to participate. The movement I need to do daily can be dancing, stretching more via yoga, using my big balance ball, breaking out the hula hoops I made, hopping on the mini-trampoline, taking a long nature walk with the camera, tending to the garden/yarden, or whatever strikes my fancy in the moment.

If I don't move, and if I eat animal products or chemical shit storms, I pay dearly. I still don't partake in caffeine or alcohol due to their dehydrating effects, and my adrenal glands have enough to deal with as far as fight or flight goes without repeatedly over-stimulating them on purpose. If I have a night when something hurts too bad to sleep, I'll take an aleve and that seems to dull the pain enough to allow rest.

Apologies for the lengthy response, but a lifetime of painful struggles eventually named fibro and the lessons learned along the way are hard to sum up in just a few paragraphs. Hoping something I shared can be helpful. Thanks for sparking the conversation.

 

[Freida]

Apologies for the lengthy response, but a lifetime of painful struggles eventually named fibro and the lessons learned along the way are hard to sum up in just a few paragraphs. Hoping something I shared can be helpful.

no apologies needed - that was some awesome info!

I do basically vegetarian diet, limit caffeine and alcohol, and the whole massage/chiro/acupuncture thing. If I stay on that path I do well -- but ya, the minute I step off I'm screwed! :laugh:

 

[Tornadic Thoughts]

Feeling chatty again. ? Not sure if you've tried totally eliminating the dairy, eggs, and gluten, as well as the meat, all at the same time, but those things create mega pain within my meat-coated skeleton like no other, for days. Not to mention the stress of the thoughts of the dairy processes as a female sexual/domestic abuse survivor and living within ear shot of a dairy farm.

Eggs make me feel heavy all over and disrupt my gut in a big way. It was weird discovering how so many of my usual daily staples were causing so much dis-ease. I also have a couple spots of eczema that show up after consumption of those things, too. Inflammatory responses kicked into turbo and then some, it seems. I wasn't sure it was a good idea to give all that up until I kept checking in for blood work and testing to make sure I wasn't hurting more than I was helping, and got greatly improved and consistent results.

No wonder I felt like death warmed over for so many decades because those are the things I basically lived off of, most especially while working f/t and going to school at the same time. A couple eggs and toast in the mornings, with a side of bacon or sausage if I had time. Make it all a sandwich and top with cheese or gravy on the weekends, usually. Or a few pop-tarts or donuts if I was in a hurry. Usually a meat and cheese sandwich of some variety at lunch with fries or chips. Subway was a favorite - of course - the place that convinced us a whole freakin' foot long loaf of bread at lunch was good for us. lol Maybe a salad, but I had to top it off with meat, eggs, and a shit ton of dressing.

Some kind of meat and starch (not a good food combination for the innards) and a small amount of veggies for supper. Once in a while I'd do fruit for dessert (another food combination that makes some massive gut grenades) but usually would dive into ice cream, Little Debbie cakes, or chocolate. I basically lived out of cans/boxes/drive-thru windows/microwaves for many years for the "convenience" factor. I definitely didn't take time to chew my food well, as I was always on the go. I didn't realize at the time that my stomach didn't have teeth to finish chewing what I often inhaled. My poor innards. ?

When I'd cook at home, it was "good ol' Southern style cooking" full of flour/sugar/salt/meat/eggs/cheese and at least one veggie, often times smothered in gravy, thickening, or cheese. Or else I'd cook the veggie in water and add a slab of butter and a spoonful of sugar, just like mom taught me. With a shit ton of coffee, sodas, diet sodas, starbucks "treats", chocolate milk, and sweetened iced tea in between. Convinced, based on what I'd been taught, that as long as it was a liquid of some sort, I was adequately hydrating myself. Beep! Wrong answer! Back to the unlearning board to see what other shift was possible based on being misfed and misled for so long.

Between the electrical issue with my heart (a-fib and atrial flutter that occurred several years after losing over 100 lbs. and feeling better than I ever had - which made me feel I wasted my damn time) and living in a pretty much constant state of fight/flight thanks to the cptsd, just a little bit of caffeine makes the anxiety levels skyrocket to uncomfortable levels. Even the supposed decaf coffee made my body respond in the same ways. No more green/black/oolong/etc. teas, either.

Roasted dandelion root tea with some blackstrap molasses and 2 drops of stevia is my new "coffee". Among many other herbal infusions/teas. Valerian root is a favorite for relaxation, along with hops and chamomile. Peppermint, ginger, red clover, stinging nettle, burdock root, tulsi, sarsaparilla, and yellow dock are a few others I really enjoy. Warm lemon water is a favorite soothing sipper, too.

I took a couple sips of wine when my step-daughter turned 21 a few years ago, after not having a drink for about 3 years, and had a constant headache for 2 days. I used to drink everyone else under the table, be it liquor, beer, wine, mead, or moonshine. I also used to blackout in my much much younger days, but that's a whole other conversation. Cold beer used to be my favorite thing about summer. The closest I get to a drink now is an occasional dropper full of a vodka-based tincture or a brandy-based flower essence.

I used to tell myself just a little bit of anything on occasion wouldn't hurt, the ol' "moderation" theory, but my body knows much better now that it's had a chance to experience life without all that other stuff and reminds me in no uncertain terms that if I insist on partaking a little bit of something my body doesn't healthily jive with, I'll feel it A LOT in the worst of ways. Taste bud addictions and illusions of "comfort" via my fork have been my most difficult hurdle to overcome on my journey of trying to heal, thus far, other than the prescription medication side effect hellish experiences I went through.

I eventually - at different stages in my life - kicked cigarettes, alcohol, weed, coke, shrooms, lsd, "speed", etc. to the curb with no problem, but something available around every corner, required to consume in some shape or form to continue living, always in your face, be it on tv, the radio, online, in every magazine, on every billboard, all over the signage and loud speakers at the gas pumps, a different smell around every f'n turn - especially near fast-food alley, etc., etc. is a real bitch. God damn the pusher man is the song that comes to mind when I'm submerged and feeling like I'm once again drowning in the sea of tox-sick-city.

Grateful for the eye-opening direct experiences and ongoing unlearning sessions that came/come my way, even if the method of their arrival often leaves a lot to be desired. What a long strange trip, indeed. Only to be repeatedly told by those we've been taught to seek out and rely on for professional help that the things wrong with us can't be explained, proven, or effectively treated. How comforting. ? ? ?