Let's Welcome JayCS from Cologne!

Hello @JayCS,

My name is Elana and I’m a Ben’s Friends intern. I wanted to personally welcome you to Living with Fibromyalgia and check in. I hope you have been finding the support and ideas you were looking for when you first joined the community a few weeks ago. It seems like Aussiemom already stepped up and explained to you how to do most of the things on the site. Have you had any problems navigating the site so far? If you feel ready, maybe consider creating your own discussion post. Considering that you are looking for some ideas to help with your back pain, asking the community directly could be a productive way to get some potential solutions. Also, you mentioned in your profile that you love the arts. Is there a particular art form you prefer? Please feel free to reach out to me or the moderators if you have any questions.

Wishing you all the best,

Elana

Welcome @JayCS!
I know that you’ve posted some, but please update us on how you’re doing.
I read in your profile that you like the arts- can you share more about that?
It is good to have you here! :blush:

Hi Elana, Hi AussieMom, thanks for the warm welcome!
I’ll start on your personal note, cos I like being “personal” too, and then give you a bit of an intro and an update on me. You could then decide if starting new threads on topics I bring up may be more helpful than keeping it here.
To tell the truth I was waiting for something practical to react to here, which is what I usually do on forums, but it didn’t really happen, so I haven’t really found what I was looking for up to now, but maybe you can take someone who really writes a lot if demand & reactions are there.
I do like your friendly atmosphere and the structure / navigation, old and improved.
But AussieMom now your 2nd welcome after your early reaction comes parallel to the urge I just had waking up after a good night to at least answer your welcome Elana and see where we go from there. :wink: I like that!
I have so many ideas already for my various pains and the Big Ache, that answering and by doing so developing my ideas further seems more helpful to me than starting a new post, but perhaps maybe I should do that. But I’ll try your update-suggestion AussieMom first.
OK, let’s keep personal first: I’ve always been interested in all arts, but music, paintings & drawings & modern art, sculpture, architecture is what I’ve kept up, although I do still theoretically like literature, poetry, theatre and the occasional film, there’s just no time in my life for it, as with more in a wide range of interests. Now I’ve been in a full flare of fibro for a year I have had to wean it down even more, despite not being able to work, but I’m glad to say I’m managing to make music again with keyboad, singing, using my mac and always enjoy the 20 amateur paintings I’ve bought and keep changing around. Most of my music is very complex, mixing electronic, progressive and partly classical. I’m on soundcloud as jayceason and one of my more easy to digest pieces, Weather Turns, a 20 min. improvisation, is now being used with a nice pic or video on youtube as relaxing music by 4 youtubers. Two of my newest pieces describe this strange new condition & life too… “PainStaking - 20 Facets” and (not finished yet, but up): “Sky-Diving (dedicated to: Fibromyalgia)”
OK: My fibro-update. The 50+ treatments that have and haven’t worked for me are all listed in my profile. I’ve just been in a rheum. clinic, which didn’t help at all, and (half-)wanted to go into a pain clinic, just in case, which the insurance didn’t want to cover, they said 2 days before it was due, to which I’ve entered in an objection.
After 10 months my employer is understandably subtly putting the pressure on to go back to work or early retirement. So I’m going to try slowly in one month and have been getting in contact to try to make the conditions as helpful as possible. One of two major problems will be to not get carried away, because I do enjoy working, but my body isn’t really up to it, except when I can organize things for my colleagues for 2 hours a day via mail from home, which I’ve been doing for fun despite sick leave the last month; I’m trying to train this, having realized it’s making me crash already. Having said that, maybe I should go there for only one hour tomorrow and try to cope with that.
The other is the coldness everywhere, due to there being a lot of people, meaning a lot of CoV-airing, and the temperature here going down to 10-15°C outside. My ideas: heating pads (probably electric not hot water bottle), long johns, 2 thick jackets, 2-3 scarves, keeping moving as much as possible, perhaps exercises, cold showers (I’ve asked for a shower-key…), if necessary warm before. My CoV-ideas: wearing a medical mask as much as possible, which I don’t really mind. I was thinking of using sneeze guards, big/wide and mobile, but I don’t think they’re effective enough, even though I would get them paid. But how do I talk to a lot of people? I can write things to do on the computer/beamer and shout thru the mask :open_mouth:
OK and on the physical level: These new developments plus the cold that’s come up is making my whole body cryotherapy less effective, although my cold showers thankfully are still helping and especially helping me sleep, as I’m testing more and more. I’ve had quite a few really tough days & nights, because of new challenges, including a meridian treatment by my acupressurist which my body unfortunately didn’t agree with at all. I’m hoping to get the cold showering and the breathing exercise down to a fine art, feeling when best to use them, but at the moment I just realize that I should do them more, maybe 3x a day at least, for the Big Ache, Quick Exhaustion and Tiredness. And for sleep I’ve started 10% CBD oil, because the application for THC isn’t coming thru and I’m wary of it anyway. CBD seems not to be detrimental as yet, but I am very tired all day after getting a lot of sleep. Plus I’ve discovered the old tricks of arnica cream and hot water bottle for all the remaining pains in my back and joints at day and especially night, which has been working a treat for a week now, so I’m hopeful. My acupressurist has only managed to get my neck and lower back pains down for a few hours up to a day, but this is working better now. For my thoracic back I this morning just placed my small hard spelt cushion directly under it, and got it down. Now I’ll do my morning back exercises, some ‘yoga’, and the 7 min. scientific workout, then later table tennis, which is only possible because of 5-10 minute breaks between the 4 games and my mate picking up every ball… O.o (oh yeah: that plus cycling, gym machine workouts, and if I could: lively dancing (mainly to electronic music) also belong to my passions).
I’ve had a doc break now because of the pain clinic not happening, but Friday to Wednesday my blood vessels, lip biopsy pre-talk, teeth and kidneys need to get further looking into.
Any questions?
My first one would be: I’m taking 3x3mg drops of CBD oil in the evenings, which seems OK for a start - where should I try going from there? But maybe that’s something a new thread?

1 Like

Dear JayCS,
Wow - I do think that breaking down some of your ideas into new topics for the group would be a great idea! This way, it will be a little easier for folks to respond - Many on the site are suffering (like you and me) from fibro fog and constant pain, which saps our energy and makes concentration difficult.
I see that you are struggling with whether or not to return to work, and your concerns are all valid, especially in the current Covid crises. I don’t know enough about sneeze guard effectiveness, but I would definitely wear a mask around others. You might consider making a note of your concerns and ideas, and meeting with your boss to discuss (I’m sure you’ve already thought about this).
I greatly admire your determination and self-discipline regarding exercise, treatments, etc., and can tell that you put a lot of thought into managing your condition. I don’t know enough about acupuncture or CBD to comment on these treatments, but I have heard good things about both. I am on several medications, and have been for years, and my pain management doctor often gives injections (both steroid and nerve blocks) to help handle the pain throughout my body. I’ve had surgeries on my hands and neck, and arthritis in hands, shoulders, back, knees; sciatica, headaches, & terrible bunions with bone spurs in feet, which I need to have removed. Topical treatments include Voltaren gel and a cream with hemp oil, emu oil and other ingredients.
I’m currently working from home (which I must get back to, here, shortly) - My hands and wrists are having a hard time of it, today, so I’ll have to make this post a little shorter than I would like.
Music used to be such a BIG part of my life. I’ve been a pianist most of my life and had to give up playing at my church (with a band I adored!) several years ago, due to the loss of cartilage in my wrist and pain from the bones rubbing together when I played. I usually keep my r. wrist in a splint now, while I type. I love reading about your musical abilities and projects! One thing I loved about our band, is the contemporary Christian music we played, and the way that old hymns were played in “new” ways. Music lifts your soul - Thank you for reminding me of this.
Please be patient with the community, here, JayCS, and I think you will come to love everyone. There are retired nurses and moderators, here, who can offer much insight, and people here who need to see your determination, despite your suffering, to give them hope. It seems that the longer we live in pain, the easier it is to slip into anxiety or depression, and to just be glad to keep our heads above water. Your posts, whether personal or symptom/treatment related will help others to continue to strive to improve their own condition. Sometimes, the knowledge that fibromyalgia doesn’t go away is frightening, but, we are all learning to take each day as it comes, make it the best day possible, and use our energy wisely. Having this community’s support has helped me immensely - I hope you’ll hang in there with us, and make some new Topic posts - You have a LOT to offer, JayCS! :blush:

1 Like

Hi JayCS,
I agree with Aussiemom. It would probably be better for you to break down your questions into different topics, so that people who have experience with specific treatments or issues can more easily respond.
Wow! You really have a wide-range of interests when it comes to art. I enjoy art, but on a pretty amateurish level (i.e. I can play the piano but not particularly well). I do like looking at paintings and doing a bit of sketching, but certain art movements don’t really appeal to me (i.e. dadaism and cubism). I really admire your ability to create your own music. I think it is a pretty amazing talent to have.
I hope you will be able to find a way to successfully return to work. I don’t know exactly what you are looking for when it comes to communication in your office, but video calls might be a good way to talk to others. It might be a bit inconvenient though, so I’m not sure how well that would work at your workplace.
I think you should definitely post your question about where to go next with your CBD oil treatment on a separate thread. This one is now almost two weeks old, so I think less people will be looking at it now.
Have a wonderful week! :grin:
-Elana

1 Like

Hi AussieMom - still haven’t found the right impulse… don’t know where/how to start a new thread. I’m feeling my ideas won’t really be of interest… so I’ll answer here first…
“…people here who need to see your determination, despite your suffering, to give them hope.”
That’s motivating… :slight_smile: :blush:
I’ve decided against a sneeze guard at work and to use good masks. My boss is playing to anything I need, but it’s me that needs to find out what it is.
Yeah, I spose your right about determination, self-discipline, putting thought in, it’s been continuing the last week, which is another good week, despite going to “work” for 30 mins. a day. So I’ll not be starting acupuncture for now. Instead I’ve been watching the cryo (taking it down to -150°C=-240°F, which is max.) & acupressure (which was seemingly “bad” for 2 days but turned out better then ever.)
I’ve stopped the CBD oil after 5 days because I was tired at daytime, and that then stopped.
Same with the probiotic bacteria for my IBS, because it made me feel nauseous most of the day.
Strange, but I’m glad to become independent of all meds, even natural ones. Keeping arnica cream tho.
My hands & wrists are playing up a little bit, e.g. while cycling, so I’ve started to do exercises immediately with one hand and the other, that’s helping. But pruning brussels sprouts for 3 minutes became so really painful that I couldn’t do anything about it, just had to rest.
You’re a pianist (too)? Ahh, after having learnt piano early on I started on traditional pipe organ, but then went back to piano and also computer/keyboard when I got to know & love modern services and worship music.

Hi Elana, I’m thinking about it, the problem at the moment is that my own answers are coming quicker than an idea how to put the question… (as I replied to AussieMom about CBD etc.)
Making music I love and long for is very fulfilling. I’d wanted to for decades but am only now in the situation to be able to do it properly (mainly because of the development of music software helping me fix my many elusive ideas). But ‘a bit of sketching’ is something great, too! OK, dadaism and cubism doesn’t do much for me either, also a lot of performance art stuff seems too superficial to me. I have 2-3 abstract paintings, but most are fairly realistic landscapes and animals. More symbolic or dynamic stuff is coming up now.
Video calls seem to be taxing with big groups, even for healthy people, they tell me, and the face-to-face contact is important in what I do, so I think I’d better keep to going there and improving my management: I’ve got my own office now (after 15 years without), a good time for that. Small but new and nice. So that’s gonna get equipped with everything I need, an adjustable and swiveling barstool with bar/high table, a mat for lying down and exercises, at least one heating pad, additional clothing, drinks, lotions and I’m getting a key for the elevator (probably unnecessary) plus for the showers … I won’t have to present at meetings at the beginning, but for when I do I’ve suggested a foldable screen for lying down and doing exercises behind… that’ll be strange… but then…

Hmm, I’m wondering whether to start a kind of diary with my ideas, successes and throwbacks in the “What’s new with you?”-category?
But I see it’s hardly being used… Might that then change? Or shall I just stay in General?
I thought I found another fitting sub-category somewhere, but lost it again…
Somewhere I scrolled down apparently all topics and then it said I could click on something and it came out in that sub-category… or was I dreaming…?
I’ve “talked” to the discobot, I’ve read the Guidelines… hmppff…

Edit: Well now I’ve started my first topic I found the category “treatments”… now I see there’s no use in clicking on “general” to get there, what I was doing, I need to click on the menu above right and select it there…

1 Like

Hi, JayCS!
I really know nothing about cryotherapy - You need to post about that, and also about acupressure. I would think that you could post in the general category or alternative therapies (I think we have something named that). I just always hit “Latest” in Catoriges, and it it takes you to the most recent posts, you haven’t seen, despite where they posted…
Yes, please protect those hands and wrists, my friend. So glad that you can still make music! :blush:

1 Like

LOL, JayCS - You’re gonna hurt Discobot’s feelings! :rofl:

1 Like

Hi JayCS!
I’m glad to see that you were finally able to create your first post! I hope that other members will give you some good responses. I know I have already said this but I really admire your ability to pursue your passions. I feel like I give up on things too easily, so hearing about all of the things you have managed to do is pretty awesome. I’m not the most experienced with performance art, but my impression of it is that the artists like acting as if they have more to say than they actually do. Do you have a certain animal you enjoy painting? I like to try and draw my family’s golden retriever when I have the time for it. Video calls can be pretty tiring, so I understand why that might not be the best option for you. It sounds like you have a lot of options for accommodating your needs at your office. I hope that everything works out for you! :smile:

1 Like

Cryotherapy, acupressure: OK, will gladly do so… :slight_smile:

How are you supposed to you get back to the ‘Categories’-page?
At the moment I have to go to the URL and delete everything after ‘org’.
Or do you have it as a bookmark? I’ve always got 1-2 tabs open and go from there.

Hands/wrists: Yes, I’ve started doing hand exercises regularly while cycling, because I have to be leant forward 45° cos of my back, but the propping up hurts them after 10mins.

Well I am soooo very disappointed with discobot for not telling me how to find/get back to the main/categories-page… And asking at the end to reach out any time, but didn’t have a clue what I then tried talking about… (and no, it *wasn’t my usual overly-complicated stuff… :wink: :rofl:

Yeah, if I do get responses I’ll keep going… :slight_smile:
Tell me if if I’m swamping tho! My inner energy is a blessing, but I don’t wanna get on anyone’s nerves…
Performance art: Exactly my thinking…
Paintings: Amateur yes, but not my own claim to un-fame, local artists I like to support. The only really good thing I once did myself was a detailled pencil sketch of a fairly tame jackdaw I once had and loved. Unfortunately I made a present of it and later separated… But I love a lot of animals & birds (esp. jackdaws, my wild talkative friends… and my wife’s 2 guinea pigs).

1 Like

Congrats on your new office, JayCS! That is awesome! It is wonderful to have the room you need, not only for your work, but for exercising, too! As usual, I can tell that you’ve put a lot of thought into it! :blush:

1 Like

JayCS, you are probably going to laugh at me, but, years ago when I was having hand surgery and couldn’t play piano (and had more energy), I spent some time painting animals on rocks. It was fun picking out a rock that was the right shape for the animal, and it took a lot of hours to get them right, but I really enjoyed it! I gave one to my MIL, which she put outside, and the bunnies on the rock got completely washed off!!! If I kept it up, I would have looked into something to coat and protect the paint…

1 Like

@ModSupport, can you please help JayCS with his question about how to get to the Categories page? JayCS says:

“How are you supposed to you get back to the ‘Categories’-page?
At the moment I have to go to the URL and delete everything after ‘org’.
Or do you have it as a bookmark? I’ve always got 1-2 tabs open and go from there.”

I’m not sure how to help, as “catagories” is always at the top of my page & easy to get to.

1 Like

Easiest question I’ve answered all day! Click on the butterfly:

image

1 Like

ROFL! Okay, I’ve been here how many moons, and I didn’t even know that! I always hit the back arrow to get there & all I had to do is click on the stinkin Butterfly at the top of the page??? HA HA HA I needed some laugh therapy.

MANY THANKS MOD SQAD!!! :star_struck:

1 Like

The other way I’ve found is to click on the menu symbol on the right, left of my icon/avatar. But the butterfly - why on earth didn’t I think of the butterfly… ;-D Thx for helping out, AussieMom, too.

1 Like