Advice? Discouraged by chronic pain

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Advice? Discouraged by chronic pain

Postby Winterbourne » Sun May 06, 2012 5:40 pm

I'm hoping someone can help me out. Basically, I have an autoimmune condition, thyroiditis, which makes me really tired a lot of the time, and some other autoimmune thing I'm still getting tested for. Whatever it is, one of the symptoms is unpredictable joint pain. Sometimes it's not much worse than stiffness that I can work through, and sometimes I wake up feeling like I've been kickboxing the drywall and can't sit up for more than half an hour. It's worst in my hands, so typing or drawing for any length of time can be impossible. I don't know if it's permanent or what, because I don't have a diagnosis yet, but it's been a problem since before Christmas.

I've been working on personal projects as kind of an escape from feeling like crap all the time, except with the pain it's hard to write or draw. I'm not really sure how to approach working digitally (or even traditionally) that could make it any easier. Being bedridden and useless is not what I'd call a good time, I'd at least like to be able to do something.

I have a drafting table and a drafting chair, although sitting for a long time is not often an option. I've increased the sensitivity of my tablet, and I'm trying to work with soft pencils. I've been doing a lot of reading. I'm trying to find some way of being productive.

Does anyone have any advice or tips or anything? I'd appreciate it.
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Re: Advice? Discouraged by chronic pain

Postby monster » Sat Jul 07, 2012 2:14 pm

hi winterbourne! this response may be late, but better late than never.
the best advice i could give to you right now is that don't get discouraged.
yah, it's easier said than done, but man, i was so amazed when you said that
you want to be as productive as you can despite of your situation. by that, you
have all the right to keep your pace on whatever you do. also, if you haven't got
a diagnosis yet, please do. it's so much easier to fight somethin' that you know.
besides. it'll help you prevent any complications.
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Re: Advice? Discouraged by chronic pain

Postby Laura » Tue Jul 10, 2012 12:04 am

Oof. That sounds miserable. I'm so sorry that you're having to deal with this -- especially with no full diagnosis and therefore no treatment plan.

There must be some items designed for rheumatoid arthritis that could help you, like soft, large pencil grips you could adapt for your Wacom or drawing pencils, etc. You could even customize a tennis ball so that the pencil fits through it and the ball acts like a grip. That might be too large for fine motor skills, so maybe something better would be about the size of a ping pong ball that your fingers could curl around...

Also, have you looked into some kind of software that allows you to dictate your ideas/stories/texts/etc., instead of typing them out? I know I'm not stating that well; it's 3 am and I'm tired. but you know what I mean. You speak, the app records and types out what you say.

Is standing better or worse than sitting? How about reclining? There may be options for both in terms of your workspace. If you have all three options available when you need them, you could feasibly work through different levels of stiffness.

That's all I can think of at the moment. I hope the tests come back with news that it's something treatable and/or, better yet, reversible.
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Re: Advice? Discouraged by chronic pain

Postby michaelk42 » Thu Jul 19, 2012 12:06 pm

Winterbourne wrote:I have a drafting table and a drafting chair, although sitting for a long time is not often an option.]


I have post-stroke pain and pretty much have the same problem. I've hacked my chair situation to be better, but it's still not great.

I did, however, get a tablet PC (ASUS EP121) that's effectively a computer in a Cintiq. (Note: the Wacom digitizer in this particular model doesn't have as much pressure sensitivity, you may or may not notice.) I got it used on Amazon, so it was a lot less than the smallest actual Cintiq and not much more than a higher-end iPad. And it's an entire computer for less than that Cintiq, and unlike an iPad you can run actual Photoshop on it. Not having to be tied to the table at all is great.
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Fri Jul 20, 2012 3:45 am

Hey, thanks for the suggestions, guys. :)

monster wrote:the best advice i could give to you right now is that don't get discouraged. yah, it's easier said than done, but man, i was so amazed when you said that you want to be as productive as you can despite of your situation. by that, you have all the right to keep your pace on whatever you do. also, if you haven't got a diagnosis yet, please do. it's so much easier to fight somethin' that you know. besides. it'll help you prevent any complications.


Thanks. :) And you're right. I'm feeling a bit better since I saw my physio. She agreed I didn't seem to have any swelling. Also, she said that my ankle is waaaay better -- it got wrenched to hell in February when I bailed on some stairs. I avoided a horrid crippling injury by dumb luck of having benign hypermobility, so my ankle just kept bending and bending instead of tearing apart at the ligaments.

I gave me a bit of hope that things try to get better!

Laura wrote:You could even customize a tennis ball so that the pencil fits through it and the ball acts like a grip. That might be too large for fine motor skills, so maybe something better would be about the size of a ping pong ball that your fingers could curl around...


You gave me an idea, actually! And it snowballed so I may have a solution for my awful writer's cramp. See, my physiotherapist found that the benign hypermobility basically means my metacarpophalangeal arch in my right hand (i.e. the first knuckles) won't stay in a slight arch, but actually collapses quite a bit when I have a three-point grip. I experimented by putting a thick pencil cushion between my ring and little finger to prevent this collapsing and it seemed to relieve some of the nasty writer's cramp that I get. Of course, it's not a real solution because it's basically a rubbery sponge, and so it smears physical media and causes my hand to glide poorly on my tablet. But my physio suggested a hand-specific physio clinic, so they could make me some kind of splint. So I'm calling them tomorrow!

It won't help my other knuckle pain, but the writing cramp is a total bitch and I'll be glad to have it gone!

I've been trying to get the Windows speech-recognition software to work, but it sucks, and haven't found anything on SourceForge. I think I'll have to try a commercial trial or something next.

I'm coveting this desk so hard Bed Desk. I spend a lot of time reclining.

michaelk42 wrote:I have post-stroke pain and pretty much have the same problem. I've hacked my chair situation to be better, but it's still not great.


Oh man, is it neuropathic? My only experience with nerve pain, which was like having a lightning strike in my brainstem, was barely eased by Dilaudid. See, I have an overactive liver, and it laughs with contempt at basically all painkillers -- and most other drugs, making treatment for just about anything more complicated. I count my blessings that my pain is more like burny-cramping -- it sucks, but nerve pain is so, so much more horrible for me. Plus, I'm seeing my doctor about changing my anxiety medication for something that's a GABA agonist -- which is effective for neuropathic pain (and fibromyalgia etc).

Is an occupational therapist available to you?

michaelk42 wrote:I did, however, get a tablet PC (ASUS EP121) that's effectively a computer in a Cintiq. (Note: the Wacom digitizer in this particular model doesn't have as much pressure sensitivity, you may or may not notice.) I got it used on Amazon, so it was a lot less than the smallest actual Cintiq and not much more than a higher-end iPad. And it's an entire computer for less than that Cintiq, and unlike an iPad you can run actual Photoshop on it. Not having to be tied to the table at all is great.


Ooooooer. That's awesome! I saw a really positive review from a professional digital artist of the Samsung Series 7 slate, but I wasn't sure if it was worth the price (being a professional nothing as I am). But the way you describe it makes it seem like a good compromise.

Hmm, good to know about the digitizer. The latest Wacom drivers (for my Intuos3 and 4, anyway) have a manually-adjustable sensitivity curve, so hopefully the digitizer does as well. I'm going to experiment with some alternate Wacom pens and see if it helps my hand as well.

Awesome, guys! Thanks so much!
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Re: Advice? Discouraged by chronic pain

Postby michaelk42 » Sat Aug 11, 2012 3:30 pm

Winterbourne wrote:Oh man, is it neuropathic? My only experience with nerve pain, which was like having a lightning strike in my brainstem, was barely eased by Dilaudid. See, I have an overactive liver, and it laughs with contempt at basically all painkillers -- and most other drugs, making treatment for just about anything more complicated. I count my blessings that my pain is more like burny-cramping -- it sucks, but nerve pain is so, so much more horrible for me. Plus, I'm seeing my doctor about changing my anxiety medication for something that's a GABA agonist -- which is effective for neuropathic pain (and fibromyalgia etc).

Is an occupational therapist available to you?


It's AKA Thalamic Pain Syndrome in my specific case, since my left thalamus is where I had the minor explosion. http://www.painclinic.org/nervepain-centralpoststrokepain.htm Basically there's nothing wrong with parts of my right side, but my brain is constantly telling me horrible things are wrong there, aside from the parts that are perma-numbed. Gabapentin keeps it from feeling completely Hellraiser-Cenobite-bodymods-like, up to the side effects barrier. And I'm afraid a therapist would be for people who have insurance. :(

Winterbourne wrote:Ooooooer. That's awesome! I saw a really positive review from a professional digital artist of the Samsung Series 7 slate, but I wasn't sure if it was worth the price (being a professional nothing as I am). But the way you describe it makes it seem like a good compromise.

Hmm, good to know about the digitizer. The latest Wacom drivers (for my Intuos3 and 4, anyway) have a manually-adjustable sensitivity curve, so hopefully the digitizer does as well. I'm going to experiment with some alternate Wacom pens and see if it helps my hand as well.


This is a good place to go http://forum.tabletpcreview.com/ep121-slate/ (and you can go up in the forum tree to whatever other tablet you might get) since there's a lot of people there that are focused on Photoshop and the like.
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Sun Aug 12, 2012 7:20 pm

michaelk42 wrote:It's AKA Thalamic Pain Syndrome in my specific case, since my left thalamus is where I had the minor explosion. http://www.painclinic.org/nervepain-centralpoststrokepain.htm Basically there's nothing wrong with parts of my right side, but my brain is constantly telling me horrible things are wrong there, aside from the parts that are perma-numbed.


Having read the article, I can only say: GAHHH!

Gabapentin keeps it from feeling completely Hellraiser-Cenobite-bodymods-like, up to the side effects barrier. And I'm afraid a therapist would be for people who have insurance. :(


Boo no insurance. :( At least gabapentin is fairly cheap. Pregabalin, the one I take, is bastard expensive. But damn the relief is amazing, even if I still have pain. Stupid hands.

This is a good place to go http://forum.tabletpcreview.com/ep121-slate/ (and you can go up in the forum tree to whatever other tablet you might get) since there's a lot of people there that are focused on Photoshop and the like.


Ooer, handy. Bookmarked! :)
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Thu Aug 16, 2012 10:30 pm

So, I've got a splint now! It does not look cool at all. I hope I can tart it up a little bit later. Maybe etch it.

It really interferes with my grip. The usual pen-style grip either doesn't even touch the tablet surface, or if it does is so tilted that it barely, if ever, registers. I now hold the stylus between my middle and index fingers, with thumb for added control. It sorted for forces me to use my arm more, so this may be for the best... once my arm muscles stop protesting. Damn short Intuos4 pens. But it seems to work.

The splint is made of moldable plastic, so I have plans to fetch some wee Warhammer modelling rasps and do a bit of DIYing. Nail clippers also highly effective! There are really annoying rough bits and some areas need buffing down for reason of cramp-induction.

It's also sweaty. Sweaty like a boss.

But I was able to spend 3 hours solid doodling, and I sketched out this:

Image

Which, for using a weird grip with half my hand immobilized, is better than I would have expected! Needs some fixes, still, but it's just a wip.

And my doctor's suggested increasing the Lyrica, which is good -- it hugely dialled back the pain, but it's been creeping back the last few days. I'm hoping to get to that point where the pain is manageable without getting the stupidness effects I've heard about. Gabapentin, I think, is notorious for that.

Feeling more positive. Feels like there are options.
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Re: Advice? Discouraged by chronic pain

Postby Eagle » Thu Aug 16, 2012 10:49 pm

Awesome, man! Sweet sketch.

I really hope it goes well for you. :/
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Fri Aug 17, 2012 4:20 pm

I'll be practicing on paper for the next little while. My stylus vanished off the face of the earth (seriously, three people tore the downstairs apart looking). So I'll have to order a new one, when I can afford it. I think I'll try the Art Pen.

Not the first time such a thing has happened. My Intuos3 pen vanished as well once. No trace.

That PenMoto thing is looking a lot more sensible, I tell you.
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Re: Advice? Discouraged by chronic pain

Postby Eagle » Fri Aug 17, 2012 5:03 pm

:shock:
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Sun Aug 26, 2012 1:13 pm

My friend Steve heard about my missing pen problem as, as he'd gotten a job teaching chemistry at a university, decided he'd buy me a new pen because he was making pen-buying money. Bless him.

Aaaand it arrived 3 days earlier than CanadaPost predicted! (Yes, I was obsessively refreshing the tracking page.)

It arrived yesterday! Hooray! I was not productive trying to use the splint but I shall see if I can use it without.

And I shall draw today because it is Sunday!

Hooray!
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Thu Aug 30, 2012 1:57 am

Holy balls.

I was a few hours late with one of my medications, because I ran out and had to wait on someone for a lift to get to the pharmacy. I usually take them between 8 am and noon. At 3:20 the pain in my hip had come back so bad I had a full-bore panic attack and could barely walk. My hands started aching as well. I took the medication as soon as I could, waiting for the bus home, and the pain let up. Eventually. After the driver didn't hear my hitting the button or yelling and overshot my destination by the longest 500 metres of my life. Getting up the driveway was the worst part. Sweet merciful christ, I don't know how I managed not to go totally insane before.

Discovery 1: Take the pregabalin on time, no exceptions.

Discovery 2: Whatever the underlying condition is is still there and the pregabalin is just masking it.

On the plus side, I can get away with the side effects that leave me a dead ringer for a drunk more easily now that my friend is taking the same class as me this fall. He may have to let me lean on him coming into class -- the earlier I take my meds, and the later I take my evening dose, the more the interaction hits me the next day and the drunker I feel.

Pregabalin: not the same drug as gabapentin, but could also be called moron-inducing. Lets me draw, though!
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Re: Advice? Discouraged by chronic pain

Postby Winterbourne » Mon Sep 10, 2012 5:04 am

The physio helped me out with a basic splint, but went away to vacation. So I modded it a little. :D

splint.jpg
splint.jpg (123 KiB) Viewed 5054 times


And my friend very kindly bought me a replacement pen, and it was an Art pen (I haven't tried too much of the spinning features yet). Except I can't hold it like a normal pen with the splint on. Then I found that if I held it the "splint way" without the splint, I didn't get as much pain from the cramp.

gripwsplint.jpg
gripwsplint.jpg (70.76 KiB) Viewed 5054 times


So then I took another pass at the sketch, this time in Photoshop.

Image

Clickez to embiggen. Needs work. Haven't decided on the woman on the right's hairstyle yet. I was thinking a Greta Garbo style to go with the Louise Brooks (which needs work).
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Re: Advice? Discouraged by chronic pain

Postby Jemm » Fri Jan 11, 2013 6:45 am

Hey I know this is super late but I just saw it and I wanted to wish you all the best my friend, knowing how dedicated you are to helping all of us it makes me unhappy to know you're suffering. I hope by now you have a treatment plan and suffer less pain and tiredness. :(

Take care of yourself Winter!
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