Update/ToDo (Aug 2nd: invisibility, chronicitiy, flares, Aug 11th: renewal, 12th: criteria)
Aug 12th: Added the FIQR 2009 and New Diagnostic Criteria 2010 at the top of the symptoms list, thx to Anit. Symptom tracking, not just pain tracking!
Aug 11th: Just renewed all 6 to be able to continue editing them.
Aug 2nd: Added “0. Invisibility” as symptom and educating and paintracking as treatments - still to improve that, Aug 8th?: Also added Chronicity and Flares there.
1. Cause/Trigger list - pretty comprehensive already
2. Symptom list - re-arranged, pretty comprehensive now (
July 17th)
3. Treatment list - In order; but so many notes to put in there…
4. I’ll renew & reap the studies list once I’ve “finished” the main 3.
5. My own triggers, symptoms, treatments, docs, etc. partly stub & update nec.
6. Cross-reference key and alphabetical list of treatments with reference key ( July 18th)
2021-07-15 Re-ordered the symptoms list: 1) Headings by relatedness to FMS, 2) added subheadings and 3) re-assigned many symptoms.
Aim: Renewing our descriptions of our experiences is helpful, but I need it bundled.
Despite the limitations in post size (32000 characters), hyperlinking (possible, but doubles the amount of characters) & editing (new versions nec. every 30 days): I love it here. 
Archive of update news May/June/July
2021-07-12 Deleted the B-version of the treatment list and completed & improved the first one, not using headers for intertwining. Instead I’ll try to do that by grouping treatments by what they are best for, see how that goes…
2021-06-30? Linkable headings? Decided against it...
Hi there - 
: I could do with your quick opinion! 
. Which would be better for you to use? Treatment list A or B? Treatment list A hides details with little linkability, whilst linkable (intertwinable) headings in treatment list B allow no hiding, making it harder to navigate/scan. Intertwining would refer a symptom you look up to the most fitting treatments (and those to deepening posts, but that’s always possible). And refer a treatment you look up to applicable symptoms & causes. And any item in an alphabetical list to where it fits systematically in any of the other lists.
2021-06-26 I’ve tried linkable headings now, but it’s not possible to put them inside “hidden details” 
Wow, don’t believe it 
, I’ve actually ‘finished’ the treatment list B, i.e. sorted it, taken superfluous links out of it, now I can start adding main links sometime…
2021-06-25 After finding out a week ago 
that characters (i.e. letters etc.) per entry are limited to 32000, which the treatments list is now exceeding, I’ve decided not to split entries into more, but instead to try to reduce characters as much as possible. So I need to put all additional information somewhere else: Easiest is to separate out my own experiences, e.g. onto my profile. Then all external links into seperate threads. Then save on formatting characters… Do you have any other ideas on this?
I’ll be able to start work on all this properly at the end of July. Haven’t even managed to integrate the recent notes I started on June 6th… But still raring to go…
2021-06-12 added Savella-“one-stop”-info-post to treatments (SNRIs, milnacipran).
Still not getting round to tidying up and sorting in my old lists as much as I’d like to…
2021-06-11 Hyperlinks inside of posts are possible, using “headings” (1-6x#) 
How to hyperlink...
This will revolutionize i.e. complete my idea for this database,
because I can now intertwine items by hyperlinking them. I wonder how the hyperlinks work exactly. These are the links to the headings/sections of 2021-06-12, having renamed the first:
Earlier Title JayCS’s Fibro Blog - #379 by JayCS
Later Title JayCS’s Fibro Blog - #379 by JayCS
Sleep JayCS’s Fibro Blog - #379 by JayCS
Activities JayCS’s Fibro Blog - #379 by JayCS
Treatment JayCS’s Fibro Blog - #379 by JayCS
Conclusion: The heading at the top of a post does not work, whether I use 1x or 2x#! Instead of pointing to the beginning of the last post, it points generally to a post 16 days ago, I assume the last loadable one. This is probably, because it isn’t necessary anyway, being at the top of a post. Interesting if you leave that one out whether the first heading later down works.
As Hyperlinks, with heading name repeated vs. without:
Earlier Title [JayCS’s Fibro Blog - #379 by JayCS](https://Earlier Title)
Later Title [JayCS’s Fibro Blog - #379 by JayCS](https://Changed Title)
https://forum.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/379#sleep-9h20-up-4x-3h35-left_right_arrow-feeling-90-well-pain-1-of-7-white_check_mark-but-hyperactive-2
Activities https://forum.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/379#activities-h-left_right_arrow-3
https://forum.livingwithfibro.org/t/jaycs-s-fibro-blog/13307/379#treatment-h-self-4
Conclusion: Same problem with the heading at the top of the post. I mistook URL for text. Corrected for 3-5:
Sleep
Activities
Treatment
Conclusion: Beautiful? Not quite. It looks beautiful, but now again the first (of these 3) links generally to a post 16 days back. So what happens if I put the 1st heading at the end?
Sleep
Activities
Treatment
Earlier Title
Later Title
Conclusion: Now suddenly the first of the 5 links is working like it shd and the last 2 are again not. Was the last test dud? No it wasn’t. It’s the way I arrange the hyperlink. They don’t work if there is no line left before. But that doesn’t quite explain why the renamed first one doesn’t work, because it is 2nd in order. What happens if I change the order back, but leave a line before the 1st in order. And if necessary before the 2nd in order too…:
Earlier Title
Later Title
Sleep
Activities
Treatment
Conclusion: It still doesn’t work. What if I leave out the one at the beginning, which I had then renamed?
Later Title
Sleep
Activities
Treatment
Conclusion: Nope. Continue when time has passed. What if I don’t rename? What if the first one isn’t at the top of the post? What if I use the first one but space it out? Neither works. The 16 days back seems to have 2+ reasons. Can’t change things in the other blog without saving, can’t change things here without saving as I can’t see the hyperlink-signs in the preview.
Conclusion: Spacing out doesn’t work. Updates here does work. Even not spacing out works here. So is it just the renaming?
Corrected for 3-5:
Updates
Even the same text as above with the first heading of a post here works. Putting a line after the text above does not work. Same heading, same surroundings, not renamed.
Can I try renaming here?
Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #13
Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #13
Try to find out what this is:
2021-06-11 Hyperlinks inside of posts are possible, using “headings” (1-6x#)
if 2021-06-12-saturday-testing turn into
JayCS’s Fibro Blog - #379 by JayCS
then
2021-06-11 Hyperlinks inside of posts are possible, using “headings” (1-6x#)
wd be
Fibromyalgia References: Causes, symptoms, treatments (to be intertwined) - #13, using “headings” (1-6x#)
The 4 at the end is like the 13307, which is the thread-number, however I rename the thread. This number is the important bit, the words before it/of the title are re-nameable. But the # is needed too. This is the short version of the hyperlink: JayCS’s Fibro Blog - #374 by JayCS. No it’s not.
These are treble-# links, but only one # is shown, it’d be interesting to check if/how that varies.
Also I’d been planning on using ‘hide details’ on each reference-item. You can’t put a # before or in that tho. So I’d have to hyperlink an item and follow that with the item-details. Also the (many) short hyperlinks wd have to be hidden in the ‘hide details’. For pain meds, I’d put that as the title, then follow it by hidden details with all the various groups and names, each with a hyperlink, but none of these can be put as a title, i.e. cannot be pointed too directly, only to the title, pain meds.
Hmm… Makes me think I shd have another good look around the Discourse-forum…
Oh dear, strange, I’m testing another hyperlink now and it’s not working this time… hmm…
It’s a ###-title which is under a #-title. This just sends me to the thread, which is of course worse than sending to a post.
2021-06-06 / June 6th: Many titbits, esp. treatments, from recent notes I want to get out of the way. Older notes and links’d be more important.
Adding details here of new things I’m adding/filing. Only rough order:
Titbits I'm adding 2021-06-06... not finished yet...
SYMPTOMS: pain caused by Fibromyalgia isn’t a threat (Jemima)
Symptom: Docs that don’t know fibro: Phone around.
Symptoms:
Air hungry.
I felt air hungry for months, as if I cd never breathe in enough. Also When doing something with a lot of energy I have to pant much more suddenly harder than I used to. When cycling that may be normal, but not when using my arms for 1-2 minutes or after climbing 20 steps in normal or slow speed when in a flare… My ‘felt theories’ are that it is fibro-related due to lack of oxygen in the cells or sudden overexertion due to muscle etc. & pain problems.
My acupressurist got the air hunger down with one certain treatment. She pinpoints the overexertion-panting regularly, using lung acupressure points on ear and body as well as working on my chest.
symptom rectum burning irritation
TREATMENTS
MEDS
zopiclone for insomnia very addictive
Co-Dydromol for pain
zapain? for pain
oramorph for pain
Naproxen it is a pain medication that had antiinflammatory properties and can help with pain.
If you meant low dose naltrexone it is a med used to aid in quitting alcohol. At less than 1/10 of the concentration (4.5mg) it has shown to help with fibromyalgia pain in small, non-blinded pilot study.
low dose naltrexone. After taking this for 3 days, I woke up at 3:30am with severe muscle rigidity.
nortryptyline helps with sleep & takes away the morning aches so it becomes more tolerable, less sedative than amitriptyline
theanine for sleep. Fx: GI. 400mg. headache, sleepiness.
THEANINE: Overview, Uses, Side Effects, Precautions, Interactions, Dosing and Reviews
L-Theanine Side Effects & Adverse Reactions (List) - Mental Health Daily
GI, keep low & with meals.
L-Theanine: Dosage, Benefits, and Side Effects
serrapeptase: GI, Haut, Muskelschmerz. WARTEN!
Serrapeptase: 13 Vorteile + optimale Dosierung, Studien, Nebenwirkungen
Apotheke: Nur für 45€, besser klein anfangen. idealo?

Wellbutrin for energy but I feel In a zone.
Does anyone take vyvance for fatique? …
Diets: Mayo clinic is neutral to weak against for diet. There is some relative recent research on gut biome and fibro.
Foods to Avoid with Fibromyalgia
https://creakyjoints.org/about-arthritis/fibromyalgia/fibromyalgia-healthy-living/fibromyalgia-diet/
Diets: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551150/ Lowry et al, 2020:
oxidative status or damage; dysfunction of pro-inflammatory or anti-inflammatory modulation; dysfunction of energy production; or, dysfunction of the neuromodulation within the peripheral or central nervous systems. To recommend any nutritional intervention, will require extensive randomised, controlled, human trials. (And that’s the problem.)
„Peer reviewed“: What does "peer reviewed" mean? - LibAnswers
TREATMENTS
Physio
Body Realignment by Jan Trewartha (incorporates aspects of Fascial Release, Orthobionomy and Positional Release)
Scar and Bonework (Sharon Wheeler).
Physios are better with fascia issues (than osteopaths). Sports physios in particular.
Sexual release/relief.
local support groups (zoom?)
cold: heated socks (cost a lot of money) and heated gloves, electric blankets and hot water bottles.
Bowen therapy
auricular acupuncture
aroma therapy
Restorative Yoga
Revitive Medic machine for exercise - probably not helpful.
costochondritis
cider vinegar(black pepper, turmeric, raw honey ginger) mix drinks every morning
Wheat bag
Heat pad
hot water bottle, Long
Frozen pads
ibuprofen gel
naproxin
rest
Paracetamol and dehydracodine
Instead of
Co codamol
Pregabalin instead if gabepentin
Low dose tramadol
Low dose fentynal
Antidepressant
Naproxan if you need inflammatory
mindfulness
TENS machine
What Is Sleep Hygiene? | Sleep Foundation
Unbewusste Anspannung zu hoch! - unwillkürlich, unfreiwillig.
CBD salve for aching body and medical marijuana thc oil for sleep at night. I mostly sleep reasonably well now compared to years of terrible/no sleep. I also started a Paleo diet 5 years ago which transioned into a nutritional ketogenic diet
Treatment of „Us/others not understanding“:
“it’s very painful, and so complicated that not even specialists understand it.” I love this definition. It is what it feels like most of the time. I think I’ll use this from now on, so thank you.
Laugh Therapy: relaxation, depression, pain
I tried laughing yoga — and what I learned about myself surprised me
Here and Now mindfulness via hiking, dancing, other exercising, playing with pets, knitting crocheting or quilting I swapped social media for meditation — and it turned me into a monster
drugs that people use for Fibromyalgia ie. Tramadol, Codeine, Co-Codamol, Dihydracodeine, Nefopam, are Opioids and you have to wean off them gradually.
Pregablin, and Gabapentin (Anti-Epilectics) also have to be weaned off.
Any Anti-Depressant, Amitriptyline, Nortriptyline, Duloxetine etc. have to be weaned off. All of these drugs are currently used for Fibromyalgia. Nefopam 30mgs X 3times a day, Paracetamol 2 500 mgs X 4 times a day, Amitriptyline 50mgs at night. That works for me, (Greenpeace UIK)
Pain Management course
Ginkgo biloba alert brain fog.
Lots of meds low dose
fentynal patch low dose ,
nortriptalin
Meditators: I saw a BBC program with Michael Mosley the medical presenter/reporter they have and they did this study where they tested the calf strength of 30 odd volunteers, then they split them into two groups. They got one half to do conventional calf exercises and they got the other half to meditate on their calf muscle for 30 minutes a day. They did this for at least a month (I can’t remember how long) then they retested the calf strength in all the volunteers. They found that calf strength in both groups had got better but surprisingly some of the meditators had improved beyond the others in the exercise group. When they scanned the muscles of both groups they found the exercisers had enlarged their main calf muscle and the mediators hadn’t but they instead had grown masses of these tiny connectors that link the muscles to the rest of the body which had made them stronger.
2-3 days Respite from a sting?! https://www.fibromyalgiaforums.org/ community/threads/brief-respite.28586/
2021-06-05 / June 5th: Added Sweating (incl. 6 studies & treatments) to symptoms. Wasn’t on there despite being by far the most common skin problem for FMS!
2021-05-27 / May 27th: Update of ‘causes’ using the list of triggers Sheila_W’s once posted. Rearranged treatments, still lots to rearrange and interlink there too…
2021-05-25 / May 25th: Tidied causes, sorted symptoms better. ToDo: Core symptoms first; introduction. Linking treatments with longer posts. More intertwining.