How many are on here?

Hey all.

So, because life happens and things have been non-stop crazy on top of having fibromyalgia, I feel like I am unfortunately out of touch with so many of you that I used to talk with all the time. Are there still a lot of active members? Is there still a 24 hour chat? I feel so out of the loop.

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Hey Dodi - great you’ve found some time to come back! It’s got a bit quieter than when I started in October, mainly because of fibro-flares - ever so often people give us a note that they are at least reading and longing to manage to come back. So I’m missing quite a few people, who want to take part more actively but can’t, but am bravely carrying on our :butterfly: butterfly flag :smile_cat:, esp. with my blog and reference lists.
Others like you do manage to come back ever so often, and some of them were on the board when you were (Aug2018 it seems?), so will remember you. When I delve into the vaults to bundle the treasures of topics I get the impression that 2012 was the heyday here and there still occasionally are some people from that time reading here. At the moment patience is necessary after posting. Not sure what you mean with the 24 hour chat, so it probably isn’t being used :grin:.
Hope you manage to keep back more often and would love to hear of your experiences, old and new.
Are you still working full time? Since my fibro flared up fully (we discussed this the other day) I only manage 10h/week, up from 0 for 10 months, but down from 50 for years before that.
How has your sleep developed? Mine’s improved bit by bit, but I still need a lot and it’s still a struggle to get it.
How have your other symptoms and treatments developed? I’m very slowly getting more and more of a handle on them, no meds, but having success with supps like amino acids (in my case too low GABA) since April for stiffness & sleep.
Is your family still as supportive as they used to be? My wife, friends and colleagues are a lot of help to me.
Do you still listen to a lot of Worship music or which do you listen to now? I’ve just been working on a very new cover version of In Christ Alone, inspired by Kristian Stanfill and especially Nathalie Grant’s studio version and am listening to a modern gospel 2CD, but after years of concentrating on all the other modern Christian Pop/Rock genres on online Christian radio, also now listen to a wide range of pretty freaky experimental modern music on bandcamp, e.g. mixtures of Jazz, Metal & Electronica… the stuff I make myself is similarly weird, but usually a bit calmer than that, often with piano, I’m managing to do about 3h/wk again…
Do you paint or collect or look at pictures or sculptures or…? I collect mainly amateur paintings, have 17 in my own (small) room at the moment, big and small…
See you soon?

Thank you for your response, JayCS. I don’t mean to come across as impatient or needy, but I do miss the people from this forum and knowing I wasn’t going insane. Fibromyalgia can be so isolating sometimes.
Good for you regarding your working schedule, I have been cutting back as many hours as possible. Flare ups are more constant nowadays. At my peak I was going to school full time as well as working three jobs…I still don’t know how in the world I didn’t collapse.
Sleep is…well, it’s hard to come by honestly haha. It is 2am where I am and I just can’t get the lights to shut off again. Thankfully my cat is my best companion and cuddles while I am awake, he is very aware of my pain. Do you have any pets?
Very bad leg pain as of late, muscle spasms and nerve pain. Nothing seems to be helping it at the moment. I am glad that you feel the amino acids have been helpful for you. :slightly_smiling_face:
I don’t really see my family a whole lot anymore, but I still talk with my parents over the phone pretty often. They still mean the world to me and we all like to check in on each other. I am glad that you have a good support system, it truly does help a lot!
I love hearing about your music, that sounds awesome! I am also playing the piano more again. Looking for more Christian artists to listen to, I have some of my favorites on repeat constantly though especially on bad pain days.
Painting, writing and sketching are still very important to me. It helps take my mind of what I cannot control and to hopefully create something beautiful in the process. What kind of paints have you worked with? What do you like to paint or do you freestyle?
Thank you again for taking the time to respond to me, like I said in the beginning of my post I have been feeling a little isolated lately…

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No worry, didn’t seem impatient at all :open_hands:
Yep, I ‘need’ the forums too, all the time. This is my fave one, cos the atmosphere has always been warm and friendly, so the best place for my blog, my home.
Oh wow, I remember 70h/wk either school & 3 jobs or work the first years, but thankfully without fibro. Hat’s off to managing that! :cowboy_hat_face:
Oh dear, not enough sleep and then trying to do something in the daytime… :roll_eyes:
My wife has 2 furry piglets, which are a blessing for me too: Meet our furry piglets Stuey and Harley
Hope you find something new for your muscles & nerves. Nothing to be ‘found’ I spose… Arnica cream helps me a bit for that sort of stuff, but only acupressure is a real help. I usually have just a normal pain in my thighs and can improve that with twist-stretching.
Do you not see your family more cos of CoV or cos of fibro or both? I’ve had to reduce the length, amount and lateness of my social contacts more to fibro than to CoV, but that’s OK for me. I had to make friends with myself and my body more anyway :rofl: I used to be a good mix of extravert and introvert, now I’m getting a bit more introverted… but job, grandchild & table tennis make sure I don’t get back in the social phobic rut I once got in in my twens.
Wow, good that you’re managing to play music more again. If we don’t expect too much it can be so rewarding. And I am (and my teacher) surprised how my vocals are improving despite not being able to do much and my singing lessons having turned to mainly music production lessons per video, but we also work on the vocals I manage to do.
Which Christian artists do you like best? I’m pretty eclectic there, often just like one or a few of one Christian artist, even the 20 Hillsong songs I love, new and old, are nothing compared to their output, I can’t even pinpoint one composer there.
I don’t paint myself, I collect - my only claims to unfame are a really bad oil painting of a boat tossed around in a storm when I was 15 and a really good sketch of a jackdaw (my avatar) when I was 25 which we cared for for half a year before s:he cd go off again: those birds are incredible personalities. The paintings I have collected are a lot of landscapes, abstracts, 2 owls, some have a surreal touch and I’m hoping to get more of that, and more dynamic ones - one of the owls is starting to fly, another is a lithography of “un match inattendu” by René Choquet, a funny race between an old-timer car and an old-timer horse-cart as well as a steam train in the background… (One of the few professional ones I have.) A new colleague of mine paints & sketches surreal stuff in her spare time, I’ve asked her for a portfolio.
So what subjects do you like to paint? Some of my tracks are influenced by fibro, with a sad touch, showing the rich facets of this new ilfe or just plain cheerful to be alive ‘n’ kickin’ - a bit… :cowboy_hat_face:

I agree there, I have tried a couple of other ones and they definitely did not feel as welcoming…I am glad that there are still some active members here or else I think I would just be asking myself if I was crazy or not lol. I am glad that you have a good atmosphere in your home, sounds like blogging is also a healthy outlet. :slight_smile:
Aww, I love the piglets! They are a blessing. I think any little heart beats around the house really do help. I know that I would be much worse for wear if I didn’t have my little black cat Feeny around. I rescued him and he has been the best pet companion I could ask for.
I have heard about acupuncture and that it helps with fibromyalgia. Can I ask if you experience less nerve pain? Pros vs. cons?
I mainly don’t see family very much (other than FaceTime) due to living so far from them. I am happy to be close to the mountains because on my days where I don’t feel so crummy, I like to actually attempt some mild hiking or sketching up there. It’s my happy place. I am definitely an introvert, wish I could be more of an extrovert. I am not wired that way haha.
Thats great that you are getting into vocals and songs! Do you record them?
Hillsong has some great songs for sure. Depending on what styles you like I would also recommend Casting Crowns, Jeremy Camp, Brian Welch is one of my favorites now after he started Christian music. Very same artist from the band Korn.
I love owls!! Best time of my life was actually getting to be up close and personal to one. Like all of my wildlife experiences, I have a love for creation but also a healthy respect for anything that can rip me to shreds haha.
I am just getting back into painting more. I do more landscape kind of paintings, I wish I was good at painting portraits but I am unfortunately too impatient. Does your wife share your artistic talents? My ex was never very good at drawing or painting, he did have a good eye for it though so it was nice to share at the time.

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I’ll separate fibro and private in my answer, for easy reference…
Well to sort out differences first: What helps me is expert acupressure, not acupuncture.
Acupuncture is proven in studies as helpful for quite a few fibromites who try it and there are acupuncture docs that specialize in fibro as well as the recommendation to go to really Chinese-trained acupuncturists. Unfortunately I’m the only person I know who it really harmed. I tried it 9x with a doc who was not well-trained and not concentrated at the beginning of my full flare and I still think it might have even helped bring it on. And then once this year with a doc who I was unsuccessfully trying ozone injections at, and was sort of speciailized in fibro-acupuncture-points. Same effect, it hurt me during and after, only this time I used the know-how my acupressurist had told me that cold showering neutralizes TCM, which it did without ado. There are quite a few variations on acupuncture, like ear acupuncture, dry needling, laser acupuncture or neural therapy (small local Lidocaine or Procaine injections) - the latter didn’t help me either, the first wasn’t sensible to do, seeing as I was successfully getting ear acupressure already.

To still answer your question re. that I’d say, yes: less muscular, nerve etc. pain, but also less generalized Ache etc., it works (for some) on the whole body and all accompanying conditions, like insomnia etc.

Now (“real”) acupressure can do all this too. It was derived in Japan 100 years ago from acupuncture and uses the same TCM way of thinking in points and meridians, but it means no needles, just pressure on certain points using parts of the body of the therapist, or instruments such as an acuball, an energy, a foot or a spine roller, or a pyramid/power mat, or a ‘needle’ (pen, stylus) that doesn’t pierce the skin. This has been developed further as ear reflexology, cf. Ear Acupressure — Traditional Chinese Acupuncture Clinic, LLC. My acupressurist works first on my ears using a metal ‘pen’, then on my body using mainly her hands, but the pen for certain quick or deep-going reactions, also other instruments like a metal vibrating wheel gadget or a pneumatic one.

One con for both is that all studies up to now were biased, i.e. it is not evidence-based, which also has the consequence that not all insurances pay for it, altho it does have some standing. Both are assessed after about 5x. Acupuncture means you have the needles in you for about 20’, which don’t hurt, and can usually move a bit (I can’t tho). I don’t know how long acupressure takes for others, but my fibro is a difficult case and we’ve been on it since Oct20, about 2x1.5h per week. It does hurt, but my acupressurist, who has fibro herself, started carefully, the cryotherapy before helps prepare my body. Occasionally a treatment causes a small flare, but usually it is very helpful at least for that day, and it has been a miracle cure for some parts of my fibro, like leg energy, air hungriness and esp. cold tolerance. If I have a certain acute pain when I’m there, she can usually press certain points, often somewhere completely different, antagonistic, which makes that pain completely go away completely and stay away too - that takes 1 to 5 minutes. Chronic pains are the ones we have to work on a lot longer, usually weeks. I say we, because she doesn’t work on my body, she works with it, and I can often take an inner active part. Now we’ve got thru the easy stuff we’re working on my loins. This is improving my ability to raise my legs (e.g. put on my shoes standing), but we’re trying to improve other various lower back problems (esp. tail bone pain, unrest at night, which doesn’t seem to be RLS) and also posture and torso (chest, upper back and neck, as direct pains like have partly been solved but stiffness and pain keeps reappearing) as well as praps even gut problems. She started by ‘ironing out’ scar tissue on belly with the vibrating gadget, which already made a difference, has also used it on the rest of my belly and legs, but my skin often can’t tolerate it, so she uses her hands, sort of trigger pointing. Like on the ear that means holding a pain spot till it doesn’t hurt any more. I wdnt say that’s a con, cos she usually knows how far she can go (I have to feedback tho). The main con is that it’s not for people who want to make do with chucking in a quick pill or 10. It’s in my case a medium- to praps long-term treatment which takes time to do and time to work. The reward however is no medium- or long-term side effects like pills have, and it doesn’t suppress symptoms, it cures the causes in my body for good. And that’s what I need and am prepared to do a lot for.

BTW: This goes to show that pressing a few acupressure points with your fingers or a pen is not the same. To get treated herself she goes to a therapist or gets it done in further regular courses and also trains her husband a bit.

Ah, great to hear about lil’ Feeny :cat2:, rescued and company! :smiley:

Close to the mountains - oh, thanks for that image! Any chance of you posting a sketch or 2?
Holiday time coming up reminds me of times in the Bavarian and Austrian mountains a few years ago. I had the problem which you def. won’t have that I cdnt “believe in them” for quite a few days, they felt unreal, so massive, like on a postcard, like a Truman Show backdrop. :rofl:
CoV easing a little (until Delta or Epsilon slogs in…) we’re thinking about what is possible for me to do in August. I’ve always had difficulty anywhere, esp. cos of back & IBSD. Now getting there, sleeping got really bad, and now having to be in again by 7pm, not being able to walk more than 30’. On our last holidays I got a bad flu which was probably the start of this ‘continual fibro flare’ and the ones before were always cause of a lot of pain, esp. wind in islands…

Yep, I record everything, make them as good as I can and put them up on soundcloud. Someone’s used a long one of mine for ‘relaxing music’ on youtube (strangely, I don’t find it that relaxing…).
Yeah, I know all 3, my fave of them is Head together with KoЯn, the other 2 are (too…) ‘nice’.
Not recommendations, just to see if you know/like any of my faves: Metal: Mantric, Snubnose, Punk: Children 18,3, Scaterd Few; Rap: Lecrae, NF; Pop: Crystal Lewis; Rock: Deas Vail, Gungor, Kings Kaleidoscope, Krystal Meyers. Neal Morse, Phatfish, Rend Collective. I spose the most well known are Gungor and Rend Collective, as I’ve done both in church worship (Dry Bones / Build Your Kingdom Here) (and you won’t believe it I’ve done NF’s Your Grace in “church” too (a kids’ service)…)., Maybe I’ll manage to do some live Worship again one day, but till then soundcloud’ll have to do.

:owl: Hehe - how do you get personal with an owl? An owl?! Nothing more introverted I spose :joy:
Yeah, I love and live for preserving creation too, part of what ‘my neighbour’ is for me.

My wife supports my making music, she “pushed me up front” in “her” church, which let the creative surge out I’d almost forgotten about having in me as well as opening up the world of Worship and Christian genres I never knew anything about before. Unfortunately severe tinnitus means she can’t really enjoy much of what I do (well, maybe better that way) or listen to… She also shares my love of paintings, altho she wdnt buy any herself I don’t think, she prefers to put calendars of guinea pigs all over the place, a bit different sense of beauty. :rofl:

Wow, thank you for your input on acupuncture - you seem to certainly know what you are talking about. I have always been worried about going though for the very reason that you mentioned - someone not being trained enough and accidentally causing more harm than good. But on my worst pain days I wonder if my pain could possibly be any worse. As more studies are finally being released from Mayo Clinic and Harvard, I am glad that more actually acknowledge fibromyalgia as a real and very often debilitating auto immune disorder. Going into nursing has made me even more passionate to help people being I truly empathize when they are in pain and pick up on some cues that others might unfortunately miss. God willing there will be a cure for this someday.
Oofda I understand pain in traveling. Whenever I go to states with beaches and high humidity my fibromyalgia starts to flare like crazy. The last plane ride I took was killer especially with turbulence over the mountains. Was never so grateful to get off a plane in my life.
That’s a wonderful gift to have for sure! I love to sing and dance but haven’t the confidence to get up in front of anyone and do it. I always laugh and say I am a background worshiper haha. I like many of the artists that you listed, variety is certainly a good thing! It must be a proud moment when others listen to or even use your songs in their videos. One of my favorite bands will always, always be Pink Floyd. I remember my dad blaring it in the garage growing up when I helped him work on his truck. Truly a fond memory before all the fibro craziness took over.
Well, the first time I got close to an owl took a long while. I was sitting in the woods for some time when I heard it hooting, slowly turned to see it’s beautiful and piercing eyes staring at me. Understandably it took flight when I eventually moved to quickly for its liking, I will never forget that incredible wing span though. The second time was at a local zoo during a Halloween event, they actually let you come up close and personal to the owls and feed them. My goodness seeing the talons on them up close gave me a new respect for their hunting capabilities!
Yes I am most certainly an introvert by nature with a love for the spooky and unnatural, I can’t explain why I just have always been that way.
Haha she sounds awesome. Guinea pigs are adorable in person and in photos so I could understand her love for those calendars.
I’ll have to try and post some of my paintings soon. Feeling a bit down since my carpal tunnel has been acting up, it makes it very difficult to hold a thin brush and do some precision lining. Wearing a brace helps a bit but I know eventually I will be headed for surgery.

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I’m here! Was active for quite awhile. Challenging times for me right now. Will see more of me in September.

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Hi Dodi, despite my experiences with acupuncture, I wdnt worry, I really have never heard or read of anyone who has suffered from acupuncture, despite praps knowing of loads of experiences of others. Really a fluke of my oversensitivity - strangely not to pain, but to “everything” else.
Fibro as AI I’m not sure of, altho I do favour that hypothesis, at least for my type of fibro, rather than CSS & SFN. But the ATP/mitochondria hypothesis and the involvement of the biomarkers cytokines (why cryotherapy helps me?), gut biome (my IBS?), muscle pressure/hormones like serotonin & dopamine (why GABA and glutamine helps me?).
Great that you see your empathy as important for nursing. Despite all job time pressures I think it makes all the difference, the way you do things, say things, look at people…
When I started (late, around 30), I used to practice at home, music up loud or headphones on and watching my moves in the window at night (not mirror!). Then learnt to “dance like no-one’s watching”. Doing some ballet as a kid only helped creativity in movements after I’d lost my inhibitions, learned how to get into a flow. Then learning to accept that “everyone’s” watching… :rofl: (helped by kudos, like people wanting to try to dance “with” me…).
It’s nice when people comment on my music stuff, but most is probably too strange / “progressive” for others.
Oh yes, I remember letting Shine On You Crazy Diamond resound around a solitary lake while tending to alone on a barge one evening on a holiday as a kid…
You love spooky stuff… spose it shows in your avatar! :wink: D’ya know Godley + Creme’s Under Your Thumb? Gives me the shivers every time I hear it.
Definitely looking forward to seeing your paintings! :sunglasses:
No alternatives to surgery help? :frowning: