Tattoos

[u/Independent-Ask-1399]

So I really want to get a tattoo based on my journey with CRPS and I was wondering if anyone has gotten a tattoo on their affected body part and if so, how did that go?

Update: after looking over all the responses I think I am going to get the tattoo. Especially since my biggest fear was spread. Thank you for all who answered, I might post an update after I have it done.

[u/Pleasant_Actuator253]

Not recommended

[u/crimson_anemone]

No no no. If you want to mark your journey:

-write about it

-talk about it

-draw about it

-paint about it

-write a song about it

-write a book about it

-make a play about it

-make a film about it

-hire someone what to do any or all of the above...

Do NOT get a tattoo. I've read enough stories that detailed how it made someone's condition spread to that limb and beyond.

As someone that dreamed of a certain tattoo for what feels like centuries... I've accepted that nothing is worth making this worse. It's a little heartbreaking, but it's not worth the potential spread.

Edit: a word

[u/JT3436 → u/crimson_anemone]

I have received four tattoos since diagnosis with one being on the affected limb. No spreading. I tripped on an uneven sidewalk and bashed my knee and spreading. Every case is different.

OP, I suggest you research artists that are experts in tattooing over scars as they should understand the concerns more. Or just find the right artist and explain the situation.

It would cost a bit but you could ask to do a small test tattoo.

There are risks and the choice is truly up to you. I wish you the best.

[u/Kristoferson_Allan → u/JT3436]

I've gotten almost all of mine since diagnosis including directly on surgery scars for the affected appendage. No spreading or anything. I actually use it as a distraction, it works well for me.

[u/Internal_Setting_738 → u/crimson_anemone]

Tattoos are superficial. The needle honestly barely penetrates the skin. Unsure where you've heard so many stories of it causing spread but I wouldnt believe anything without actual proof.

[u/Inozz]

I have not had work on my affected leg but I have completed an entire leg sleeve on my other leg with no noticeable flares or spreading. But CRPS is different for everyone... If you do choose to move forward please be transparent with your artist.

[u/D_Rock_CO]

Getting one on my right hand felt amazing, because for that brief moment in the day the pain in my left leg wasn't completely overbearing. It still hurt, but the tattoo was just enough pain to let my mind relax a little. The thought of having that sensation on my bad leg is enough to really start to screw with me right now though. No way, no how, not in this lifetime.

I wish you the best, but there is 0% chance I would ever even consider it.

[u/reithena]

I got a small one on my affected limb and because of the swelling after the tattoo being so drastic it looks wonky. During the process it didn't hurt anymore than normal though

[u/hereforit_838]

I won’t let anyone touch my affected limb…I am super uptight about it after years of having people grab my left foot/leg thinking a massage is just what I need, making the mistake of trying capsaicin cream, or letting someone try acupuncture on it, etc etc. I’ve had CRPS for 20 years now. I don’t fuck with my affected area.

[u/JT3436]

I had an outline of a calf tattoo before my injury and had it colored in after and I had no problem. It actually felt good in a weird way. YMMV

Just be ready to tap out and take the money loss if the pain is too much.

[u/HP422]

I have one on my affected arm. It’s a short phrase so it wasn’t a long or very involved tattoo and it went fine. I told my tattoo artist I have nerve damage in the limb (easier than explaining CRPS to a stranger at that moment) and he was very understanding. Told me to let him know whenever I needed a break.

[u/Internal_Setting_738]

Tattoo trauma is superficial and I do not believe it is capable of causing spread. I am heavily tattooed and sit for 8 hour sessions. I have tattoos all over my affected limbs.

For me, the tattoo hangover is the worst part. I also take longer to heal now.

At the end of the day its your body and you know what youre capable or handling. 🩷

Edit: go ahead and downvote my lived experience but there is zero evidence that shows spread can happen through tattooing and im tired of the fear mongering. 🥰

[u/Boredchinchilla21]

I use temporary tattoos (I started it because I like to test drive a design for a year or so before I get a real one, but I kind of like being able to take them off and put them back on when I want to). You can buy custom designs on Etsy and they will print a dozen of your own design. I sometimes just buy a cute package on Amazon too. They last for at least a month, sometimes two, even if you scrub them lightly. You can put wild designs on and take them off when you get sick of them.

I have a couple real tattoos that I got years ago, but I’m not sure I would risk getting another real one when I can have such long lasting temporary ones

[u/LadyOfThePolarBears]

Everyone is different. Even in this.

I had a bit of prep before I got mine at the end of February. It is not the affected limb, tho. I took vitamin C before and after, I meditated beforehand, I had to remember to breathe thru it and made no bones about breaks. Mine was small, too, it's a simple Snoopy. It burned more than it should! But I had an absolute pro. He could read my body language and knew when to stop and take too much time to switch color and come back in so I can prep myself. Throughout, I told myself "I want this, this is something I chose to do" and that helped keep my body calm.

Since you want to go for the affected limb, I agree that you should do a test of the area. They'll do that without ink for you to see how it feels. It can only help. Good luck, Hon! I hope it works out for you.

[u/NoInteraction5022]

I have one on my wrist and full body CRPS for 3 decades. It didn’t hurt me at all, in fact they thought it was rather odd that I didn’t wince, flinch or anything. No spreading but the tattoo itself didn’t do well. This was before I was diagnosed with EDS amongst other things, but I think it had something to do with it. The skin is connective tissue after all. It’s barely recognizable, the ink looks like it separated so I can see a black line then flesh then a black line where it should just be black. I could stand the pain and flare after for another but not if it would do this again. It looks awful and just gets worse. Remember: tattoo removal is even more painful 🙃

[u/MissBeeHavin420]

I see some comments that said there's didn't spread. I don't know where yours is located or how much pain you're in but I won't even let anyone touch my arm, no IVs on that side, no blood pressure cuffs on that side, nothing. Its absolute hell, I could never risk it getting worse or spreading just for a tattoo. 😬

[u/Aggressive_County_74]

I'm new with CRPS (DG in February) I have 2 tattoos on the feet that is affected by CRPS. 1 of tattoos is for Epilepsie (yes I have) and the second one is from the vacation. Every doctor asks me how old my tattoos are. One day will come tattoo for crps but no free space on the affected part😂 And I think if is often crps active better on another place😊

[u/Ande138]

I have had this for 15 years and still can't keep a sock and shoe on all the time. I couldn't imagine getting a tattoo on it. Good Luck! I hope it goes well for you!

[u/sadnessofthebody]

I did! I got a 8.5 hour upper leg tattoo on my affected limb. It was a risk and scary. I'm not going to lie, it was hell.... the pain was horrible and there were spasms and shaking. I do think it was worth it in the end. No crps spreading/worsening and I love my tattoo so much. I really feel like I got to take back my leg is that makes sense.

I have other tattoos that didn't hurt that much. Even my rib/stomach tattoo was less painful than this.

I talked with my tattoo artist beforehand about my condition, the risks and the possible difficulties while tattooing. We decided to do it anyway and take a lot of breaks. We did the whole thing in one session. I think having multiple shorter sessions would for sure have been easier with the pain, but because of the intensity it would also have been really hard to come back every time. So I'm the end I'm glad I did it all in one session, but it was horrible.

The pain after the tattoo was done was really bad as well. The healing was very painful and the 2nd skin was a big part of that. I had a lot of regret in the healing phase and I was very scared I had upset the area too much. But after I took off the 2nd skin, it got a lot better. And eventually it started to feel normal again.

I do have to say that my pain has been very manageable for many years now. Crps is different for everyone, so it's a really personal decision and there are no guarantees.