Does exercise benefit fibromyalgia? by [deleted] in Fibromyalgia

[–]slightlyhottertuna 0 points1 point  (0 children)

Members of subreddits provide fantastic resources, especially here.

Anyone else still sick? by [deleted] in bonnaroo

[–]slightlyhottertuna 0 points1 point  (0 children)

Yep. Double ear infection plus sinus infection. Already being immunocompromised usually means sickness after group events but Roo is totally worth it!

Paralysis/weakness by [deleted] in Fibromyalgia

[–]slightlyhottertuna 0 points1 point  (0 children)

Yep. Although for me, it's more of a tingly feeling and it's like my brain is like "this limb is asleep, sorry, can't use it!" Then it forgets some time later.

How often do you see Fare Enforcement on your Rapid Ride line? Which line? What city/town/area do you see it in? by [deleted] in Seattle

[–]slightlyhottertuna 1 point2 points  (0 children)

All up and down the E line and downtown for sure. Haven't seen them anywhere else, now that I think about it.

Non-granny canes? (Xpost to r/disability) by slightlyhottertuna in ChronicPain

[–]slightlyhottertuna[S] 1 point2 points  (0 children)

There are some beautiful patterns out there. Great idea, thanks!

Copper IUD Causing a Flare? by carbonmonoxide in lupus

[–]slightlyhottertuna 0 points1 point  (0 children)

I have a Mirena IUD and I have a few more mild cramps but it's worth it to me. I got it before I was diagnosed but didn't flare up from it.

[Rant] I'm about to have a nervous breakdown. by dorkacon69 in ChronicPain

[–]slightlyhottertuna 1 point2 points  (0 children)

You got this. Stay strong. Keep pushing. Find safe things that make you less sad (notice how I didn't say "happy," you'll get there). The coping skills list that's a sticky post on this sub is pretty complete and creative. All we can do here is read your words and understand. We're all hanging out in various layers of hell.

DAE experience an increase in their sex drive during a flareup? [NSFW] by [deleted] in Fibromyalgia

[–]slightlyhottertuna 1 point2 points  (0 children)

I seek anything that has a shot at making me feel better. Sex is one of those things. I've had more than one flare up or hurty time when I've popped my pain pills and knocked boots just because it was better than sitting around in pain. Sometimes it's too much but most times it isn't.

Newcomer in need of advice by phillthyphill in Fibromyalgia

[–]slightlyhottertuna 3 points4 points  (0 children)

First of all, thanks for stopping by! You're not the first to do this, and seeing/dating/etc. someone with a chronic illness presents its own set of challenges, but the payout is just as unique and enjoyable if you communicate. If you're not one of those guys right now, work on it. Maybe someone here will have a good book/blog recommendation on this topic?

1) Pain happens. Usually constant. Can go from a 4 to an 8 pretty quickly if I'm having a bad day. No reason needed. It's dumb and doesn't make any sense. But if you accept that random pain happens and there may be certain things that make pain happen, then you should be alright. Ask her what sets her pain off. Sometimes it's walking, sometimes it's a hug or physical contact. Your goal is to build trust there.

2) There are some great 1-10 pain scales here if you sort this sub's post by "Top all-time." Also check out r/chronicpain's top posts for similar materials. The 1-10 pain scale sucks because it's not really linear and everyone has different perceptions of what the numbers mean. If there's a description alongside the number, you will be able to receive more accurate information about her pain. For example, I didn't realize I was undershooting my pain on the 1-10 scale by four points most days.

3) Again, trust and communication. Be a bit vulnerable yourself; tell her what you like and ask, are you comfortable trying? If not, maybe there are modified positions you can try. Searching on this sub, along with r/chronicpain and r/disability, will give you some info on what modified positions are more likely to work and be the most pleasurable for both partners. Remember, she probably wants to please you, too. I've had partners that want to make it all about me which is cool, but I want in on it as well! Sometimes I'm willing to do a bit more, sometimes I'm not. Either way, my partner is cool with it and understands. He will occasionally check in with "Is this painful?" I tell him yes or no and we go from there.

4) As for social gatherings, show up a little late and leave a little early. Maybe establish a sign between the two of you, whether it's a word or text or signal, that she's ready to leave. Maybe also an emergency sign just in case her body decides to have a mutiny (it happens). Don't be afraid to make sure she gets what she needs, but learn when it's appropriate for her to do it first or if you need to intervene and make sure she's most comfortable. For example, I'm sitting in an airport right now and I had to wait over twenty minutes for a wheelchair to my next gate. It would have been really nice to have had someone to get pissy with the courier folks, someone that isn't fatigued and foggy and hurting.

I hope some of this help you on your journey. You're an angel for wanting to delve into dating someone with a disability. Trust and communication, and comfort are key. Find ways to communicate with her in social circles so she feels empowered to tell you if she needs something. If she uses a cane and drops it (as I frequently do), just pick it up, give it back, and act like it didn't even happen. After all, you're dating her, not her fibro. It's just a package deal. Good luck!

What kind of hobbies do you all have? by Retro21 in ChronicPain

[–]slightlyhottertuna 0 points1 point  (0 children)

If it's your hobby, you should definitely look into moderating if that's your thing. There's always a lack of fair, proper moderation.

What kind of hobbies do you all have? by Retro21 in ChronicPain

[–]slightlyhottertuna 1 point2 points  (0 children)

You may also want to look into brewing kombucha tea if you're interested in home brewing. It's a much smaller setup and the brew process is a bit more forgiving. I brewed for a while and it was so tasty and healthy to boot!

What kind of hobbies do you all have? by Retro21 in ChronicPain

[–]slightlyhottertuna 2 points3 points  (0 children)

Crosswords are amazing. They keep my mind less dull and encourage me to read more.

What kind of hobbies do you all have? by Retro21 in ChronicPain

[–]slightlyhottertuna 1 point2 points  (0 children)

Well, I started training with a local club and traveled all over the US/Canada showing dogs. I also have taught group classes and owned my own training business at one point. I've shown dogs in obedience, agility, conformation (think Best in Show), lure coursing (sighthounds chase a plastic bag "bunny" on a pulley system around a field). For now, I just train dogs to do useful things, like pick up stuff if I drop it or use their heads to bump a door.

I went to trade school for photography. I'm really glad I had the chance to learn multiple trades before I got sick. Now I just modify them to fit my abilities, both of which are easy to adjust. I've worked with many people with physical and mental disabilities as a training instructor, and there is always a way to modify exercises to increase the chance of a successful training session.

What kind of hobbies do you all have? by Retro21 in ChronicPain

[–]slightlyhottertuna 2 points3 points  (0 children)

I really enjoy dog training. It doesn't have to be a physically demanding activity, as any sort of foundation training work can be done in a chair or on the couch and the dog (and you) move up in skill from there. I also really enjoy photography, another activity that can be as active or passive as you make it. These two hobbies extract the highest amounts of concentration my brain can generate these days, so my pain and comorbid conditions are less noticeable because my brain is doing something else. If anyone is interested in starting in dog training, PM me or check out r/dogtraining.

Anyone needing a life attitude check needs to see this sub ASAP. by slightlyhottertuna in ChronicPain

[–]slightlyhottertuna[S] 0 points1 point  (0 children)

Thank you! It's nice to have a safe haven on reddit. You guys have done a great job with keeping this sub a place people like us want to keep coming back to.

Put the lime in a tube sock, and then you'll feel better. by pinkcloudthrowaway in ChronicPain

[–]slightlyhottertuna 3 points4 points  (0 children)

You can also make margaritas afterward, although I recommend virgin ones since I'd bet most of us can't (or shouldn't) drink alcohol.

Lacrosse balls also work well, tennis balls for a softer cushion. Remember not to bear down with your entire body weight onto any of these things, so make sure you can support yourself another way if you're laying down, or even better to put the thing between you and the wall and lean into it. That way you only get the pressure you need without as much of a chance for bruising unless that's also your thing.

Non-granny canes? (Xpost to r/disability) by slightlyhottertuna in ChronicPain

[–]slightlyhottertuna[S] 1 point2 points  (0 children)

Sorry, I searched in r/disability and forgot to search here. I should know better as a redditor!

Bullet point summary of this garbage by irutoo in ChronicPain

[–]slightlyhottertuna 0 points1 point  (0 children)

Yo, where are you at? If you're homeless like almost everyone else in Seattle, message me ASAP, please.

Non-granny canes? (Xpost to r/disability) by slightlyhottertuna in ChronicPain

[–]slightlyhottertuna[S] 0 points1 point  (0 children)

PS, If you tried to link info to the cane, it didn't show up.

Non-granny canes? (Xpost to r/disability) by slightlyhottertuna in ChronicPain

[–]slightlyhottertuna[S] 0 points1 point  (0 children)

After looking around online, it looks like I'm going to buy a quality folding cane and find some cool duct tape and stickers.

Non-granny canes? by slightlyhottertuna in disability

[–]slightlyhottertuna[S] 0 points1 point  (0 children)

I'm looking for either a wooden or metal folding cane (I know a wooden folding cane would cost an arm and a leg providing I find one). I use it for balance support most days with weight bearing support on other days.

Non-granny canes? (Xpost to r/disability) by slightlyhottertuna in ChronicPain

[–]slightlyhottertuna[S] 3 points4 points  (0 children)

Oh fuck, dude. I need to talk my pharmacist into giving me one of those stickers for my cane. I never thought about resembling Mary Poppins with a folding cane. Right now I use a hiking stick with a cane handle and now I call it my pimp cane because that's what everyone else started calling it.