New and confused

sweetkamie20

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You don't know you're closer to a very good list than you'll ever get?
Here on our main site (via Home (see bottom right on every forum page): Get Help: Doctors):
Fibromyalgia Doctors Around the Globe
Lol I have a "fibro" doctor I really like. I mean, I don't expect much from them and she did all of the testing and didn't push me off. It was a speedy process and, well, I don't think anyone else has more to offer...

I have gotten way more from you than I have yet to implement :) It was really a joke about finding a doctor with Fibro as though I could find it from a google search
 
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JayCS

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It was really a joke about finding a doctor with Fibro as though I could find it from a gooogle search
Oooh, did that woord praps stoopp the poost cooming thru? :D (the quote made me delete and re-write)

I still didn't get it reading this, the sun's scorching my brain, but suddenly I realized you mean a doctor who has fibro themselves? Well there are quite a few of them - authors. Like Ginevra Liptan and Mark J. Pellegrino... But it's true, my (ex-)cryotherapist/acupressurist has something like fibromyalgia, and it doesn't say that anywhere that she has it, only that her stuff may be good for fibromyalgia.
 

JayCS

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Is your BP ok now? A fibro flare can make you more sensitive to everything.
My blood pressure is now controlled b a low dose of lisinipril
My GP rightly guessed mine was up due to the pain, so it's not just any sensitivity, it's the pain.
A full CVD check-up just in case brought up quite a few risks, esp. genetically high lipids. Took 5 meds for a year, Candesartan rather than lisinopril, and a statin for the lipids, seemingly well tolerated. Then my supps managed to get and keep it all pretty well under control (via relaxing serotonin) and GP and cardio agreed to stopping them.
My BP goes up a bit from the slight tension at the docs, so I regularly check every few weeks myself at home, with arm fairly horizontal (it's important to read up exactly how to do it). Sometimes it takes 10 minutes to settle down. My cardio says up to 130 or even 140 is OK, as I am still as active as I can be, and heart etc. healthy. She does 1 alternating check every 2 months, also did my 2nd jab so has started checking my bloods generally now too, sort of bad conscience due to it severely triggering my MCAS.
 
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cookiebaker

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yup, my bp has been slightly elevated lately, too, due mostly to increased pain with the back...
I tend to run on the low side of "normal" - like 108/63 on average... but lately it has been up into 130s/80s - still in normal range, but high for me.
hoping it is down again at my next check since having the back procedure again - at least that pain is greatly reduced.. now just need to get the muscles working better.
 

Shel

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Hello all! Can you give me your feedback on what supplements have helped your muscle and joint pain? 🤗 💪
 

JayCS

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Hi! I’m not sure this went through correctly.
Hi Shel, well - maybe I saw it, but then it slickly slipped by?
Well first my experience is that our joint pain if it isn't rheumatic but fibro is the tendons, not joints.
Secondly I experience stiffness with pain cos my muscle and tendons seem to shorten in rest.
Thirdly I get further local pains, and these are all muscular (e.g. spine, clavicle, groin, plantar fasciitis).
Fourthly I get severe deep muscle Ache from overdoing it along with severe fatigue.
For pain types 1-3 I have a lot of success as I often say with exercises, stretches, acupressure, massage gadget and topical arnica cream, and combinations of these, I doubt no help from other supps.
For the Ache and many other areas my main help apart from pacing comes from the amino acid GABA, praps also from magnesium malate. Whether the other supps that are recommended for pain help me I don't know, but I take them for several other reasons as well: CoQ10, omega 3, honokiol, feverfew and PEA, I think NAC helped, but I've stopped it for other reasons, for some NADH, D-Ribose & serrapeptase, these are also supposed to help: pau d'arco, cat's claw. And not supp but also just as individual is L.D.N., for some it hurts more, for some it helps.
My bottom line: I don't think supps help me much for pain at all, except praps GABA,
despite me on the one hand taking 30 supps, and increasing at the moment (mainly for fatigue),
and on the other having decreased my local pains to about 10% with the above self-applied PT.
 

Shel

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Thank you so much. I’m suffering from plantar fasciitis currently, too. 😔 Is gaba different thanGabapentin?
 

JayCS

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Is gaba different thanGabapentin?
Yep, it's not a med, but a supp, a neurotransmitter, amino acid, abbreviated GABA. Helps me in 10 areas.
Gabapentin/Neurontin and pregabalin/Lyrica are med derivatives of it and work very different to the supp.
So to avoid confusion it's best online to not abbreviate gabapentin to "gaba".
You can but maybe shouldn't just "take" GABA....:
Trudy Scott's amino acid "questionnaire" (= checklist, see my profile) shows which amino acids you need. However with fibro we usually have low serotonin & GABA, esp. with anxiety and muscle tenseness,
so it's very worthwhile trying. Best start low (125mg sublingual) and slow - not like daredevil I did 🤠.
You increase till the symptoms increase again = "overdose", that's why best slow.
Alternatives for serotonin/sleep are 5-HTP and L-tryptophan, but I get GI & zombified from those.
It's off the beaten track and has only a little medical evidence, recently, so is not commonly used and so people appear to hesitate to follow my recommendation, but those few that do are pleasantly surprised, sfx only a few a few days, and no one has told me they'd stopped. Read Trudy Scott's blog for more.... :cool:
 

JayCS

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Thank you!!!!
By the way if you or anyone is into essential oils, there are combinations they like to call the "morphine bomb" - again only anecdotal evidence of course, and more of a 'joke' to call it that, apparently often propagated via social media, which isn't exactly comforting.
One example is 15 drops each of lavender, peppermint, and 10 of chamomile, marjoram, lemongrass",
another "5 drops Frankincense, Copaiba & Idaho Balsam Fir",
a 3rd "6 Drops Marjoram Oil or Oregano and 6 of Frankincense",
a 4th "20 drops of marjoram, lemon grass, copaiba & frankincense.
A video called - "is it safe?" which seems OK,
says of this 4th mixture, only copaiba & frankincense are OK for pain,
but not as highly concentrated as often rec.,
she also says not to ingest these as often recommended, but to use topically.
When they (not just her) say high dilution they mean high concentration, irritatingly to me.
She says "all the rest are dangerous, buy mine" ;-).... so watch out doubly or better leave it be...
Now I know why I never wanted to dabble with this stuff - I'm much too sensitive.
But lavender was sometimes a nice placebo for sleep.
And tea tree oil for most things sore helps me a lot, strangely despite my sensitivity.
 
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Shel

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By the way if you or anyone is into essential oils, there are combinations they like to call the "morphine bomb" - again only anecdotal evidence of course, and more of a 'joke' to call it that, apparently often propagated via social media, which isn't exactly comforting.
One example is 15 drops each of lavender, peppermint, and 10 of chamomile, marjoram, lemongrass",
another "5 drops Frankincense, Copaiba & Idaho Balsam Fir",
a 3rd "6 Drops Marjoram Oil or Oregano and 6 of Frankincense",
a 4th "20 drops of marjoram, lemon grass, copaiba & frankincense.
A video called - "is it safe?" which seems OK,
says of this 4th mixture, only copaiba & frankincense are OK for pain,
but not as highly concentrated as often rec.,
she also says not to ingest these as often recommended, but to use topically.
When they (not just her) say high dilution they mean high concentration, irritatingly to me.
She says "all the rest are dangerous, buy mine" ;-).... so watch out doubly or better leave it be...
Now I know why I never wanted to dabble with this stuff - I'm much too sensitive.
But lavender was sometimes a nice placebo for sleep.
And tea tree oil for most things sore helps me a lot, strangely despite my sensitivity.
I know, I’m always too afraid to dabble in these 🤷‍♀️
 
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