Hope the treatment works out for you BlackSwan
I second that.
Thank you! It’s my last shot, in my mind.
Good luck!!! Love you!
Thank you! <3
Good luck with the treatment! Lolsnaps community is always here for you!
<3 as it always has been, thankfully. I love you guys. <3
Thank you! Me too!!! I’ve got my fingers, toes, and eyes crossed! It’s my last fucking chance!
Hope all works out for you! Love ya, girl!
Thank you! <3
good luck and swift recovery
Thank you! <3 fingers crossed! 🙂
So what is this for, if you don’t mind me asking.
No problem! It’s for my CRPS (Complex Regional Pain Syndrome). I got it in 2013 from tripping in high heels. It’s a rare agonizing pain disease. A good website to learn about it is burningnights.org and princessinthetower.org. I’ve had it spread body wide and it’s begun spreading internally (my eyes, stomach, intestines, bladder, and intercostal muscles). It can spread anywhere there are nerves. There isn’t a cure and there’s very few treatments in the US. My life has pretty much ended because of it. I can’t even shower myself because of the pain it causes. My Mimi and my son have to help me with literally everything. It’s nicknamed “the suicide disease” because so many people end up committing suicide to stop the agony. I fantasize of it many nights since it’s spread. Before, I used to just fantasize about chopping off the leg. It’s a horrendous disease. If you want to follow the treatment I made a page on fb called Neridronate Infusion Therapy in Italy. <3 🙂 feel free to ask me any questions.
If you need to go to Italy to do the treatment write me, You have where to stay, for free (also food included).
I am an amazing cook
Where in Italy are you? I’m actually in Bologna now until the 28th. We’re staying at Casa Munay near Policlinico Sant Orsola Mapighi. You’re not nearby, by chance… are you?
Not now (I work at Piemonte) but my girlfriend lives there, maybe I’ll go this weekend. I’ll write you if I am going
Ah. Cool. Yeah! Absolutely! We’ll be here until the 28th. 🙂
I really hope it all goes well.
Thank you! So far it’s amazing!
All the best!
God bless you with a successful recovery. Peace.
Thank you! 🙂
I wish all the luck in the world. You’re in my head now, so this better work 😉 I can’t say any more cause I’ll honestly start crying. Xxx
We’re all rooting for you mate! Best of luck.
So, how’s it going so far?
Amazingly well! At one point after the first treatment my pain level went all the way down to a 4!!!!!!!! It was amazing!!!!! The only other time I could remember having pain that low was the ER visit where the doc gave me so much pain medication that I kept forgetting to breathe! The machine would beep and my mom (or was it Mimi?) would go “Khloe breathe.” A nurse would come in and remind me to breathe and check me to make sure I wasn’t dying. Lol. That was a good ER visit… the doc gave me a little extra just before I left and it lasted until the next morning. It was very nice.
The pain is a little increased today (so is the other warrior who is here). I’m having some jaw pain, which is a side effect of the med, but the flu like muscle aches have pretty much gone away. It’s seeming like a success so far. I’ll feel the full effects of it within 6 months. 🙂
OMG!!! THAT’S ABSOLUTELY WONDERFUL!!!
It really is!!!!! <3 I'm super stoked!
Whoohoo! Sincerely hoping the next few months bring positive results 🙂
Thank you!!!!! Me too! I’m trying to stay in the present and not think too far forward.
You can dooo eeeet! Good luck, hon!
Thank you! I hope so!
Good luck <3
Thanks!!! Fingers and toes crossed! <3
Thank you!!! I’ve got everything possible crossed! <3
Seriously, who is this?
One of the regular commentators on here.
That would be my fat ass. XD I’m currently in Italy for a treatment for my CRPS (Complex Regional Pain Syndrome) that I’ve had since 2013. It’s spread body-wide and we think has actually begun spreading internally to my eyes, stomach, bladder, intestines, mouth, and intercostal muscles. Fingers crossed it works! <3 🙂
So the US does not have that kind of treatment, but Italy does? What kind of medication is that?And also good luck.
Thank you! Yeah the US has just started studies for it in the last year. They’ve just bumped it up to the same dosage as Italy’s, so I’ve heard. They began at a fraction of the dose. Italy has been using it since 2004.
It’s Neridronate infusions. It’s actually an osteoporosis med they found worked for CRPS. It’s the only treatment in the world that can claim permanent results and that 100% of participants benefit from it, as far as I know.
Thank you so much!!! If you’re interested you can follow the progress at https://m.facebook.com/groups/109909906205836?ref=bookmarks, a fb page called Neridronate Infusion Therapy in Italy that I made. <3
I'm so lucky to have this site and such wonderful friends here. <3
Having read more about what you’re going through I sincerely hope this works. You’re a motherfucking bad ass to be as good humored as you are on here with all that going on. Come on 100% relief!
Awwwwwww!!!!!! That’s so sweet!!!!!!! I’m gonna cry! <3 <3 <3 Thank you!
Thank you! <3 <3
Who the fuck is downvoting this?
There are 3 people without souls so far.
I love you guys. XD
You too. All the best.
Good luck to you!
Thank you so much! <3
Hey girl! I dig the house shoes! You got this.
That had Mimi and me in fits! XD They’re not actually shoes. They’re slippers that I got about six months ago or so because the pain had gotten so bad I couldn’t wear regular shoes. It was winter and I was freezing my feet off wearing these sandals. Lol. XD
So thank you. I really appreciate that. I’m happy they could pass as nifty shoes.
Oh damn, we call slippers “house shoes” down here in south Texas. Ha! Glad I could make you laugh
Lol. That makes sense! They’re meant to use in the house. XD. I’ll often wear them inside because the hard wood floor is too painful to walk on during flares. The slippers have a little bit of give that help. I’ll also ambulate myself around in my transport chair with the feet taken off. It helps reduce the weight put on my legs on those bad days.
Who downvoted this?
As usual. I am guessing a mix of drunk mis-votes, petty jealous twits and maybe a nasty troll or two.
I’m hoping it’s people who are downvoting the disease, not her.
Well those individuals need to be kicked in the teticulars.
Good luck. Everything will go great, you’ll see!
Thank you! I’m hoping for at least 80% relief! Then maybe I can have a life. Play with my son even! 🙂
You will, you’ll see, but don’t settle for 80%. I hope you’ll be 100% A OK soon enough 🙂
Lol. I’ve just had so many treatments fail. While 100% would be AMAZING, it would also be a damn miracle. I have to keep my expectations and hopes reasonable. The last big treatment I dared hope for, nearly killed me when it failed. So I’ve set realistic expectations to avoid that. I actually went into detail with that in an above post. <3
Well, regardless I truly wish you the best. May the best possible outcome happen for you, your son and your family. Lots of love from my end to you guys!
Daaaaaaaawwwwwwwwww!!! Thank you! That’s so sweet! Plus Pokemon is AWESOME!<3
Pikachu says youre awesome too!
I am missing a good chunk of the context for this one, but still hope whatever is happening goes well.
I explained in a big long comment below if you’re interested in reading it. 🙂 <3
You can do it! Good luck!
Thank you! Fingers and toes crossed! Maybe in 6 months I’ll be able to upload a pic of me riding my bike. Something I’ve been unable to do since 2013.
Holy Carp… I hope the treatments aren’t too expensive. :
I hope you get super awesome results and relief.
It’s 180 euro for the initial doc visit. Then 200 for each treatment totaling 4 treatments. It’s the airfare that was REALLY expensive, because the pain is so bad that I couldn’t fly coach. We were able to raise the money for the treatments and part of the b&b, which helped tremendously! So my Mimi is only having to pay for about half of the b&b, airfare, and food (which we’re splitting). People have been so kind to help us with it. It has been amazing. <3
Is there any place where I could donate?
I would gladly donate through a funding site. Maybe Hoodie could set up one!
I’ve been using this one! That’s so sweet of you to consider! Thank you!
Good luck, I look forward to hearing about your progress and hope you get as much out this treatment as is possible. Healthy vibes being sent your way.
Thank you! Fingers and toes are crossed! Lol. I hope to fuck it works. I really want my life back.
You can do et! On a side note, that hospital looks scary, I hate hospitals 🙁
STAY STRONG!!! Star wars ep. 8 is coming.
Best of luck to you, hope all is well
You are a regular here and have always been so nice. You dont deserve to have to go through this. Big hug!
I really really hope this treatment does you good, you’re a great gal and deserve the best treatment and I really admire you for seeking it even if it had to be abroad https://uploads.disquscdn.com/images/99a672d320446f4a5d3f889d9ca739cf0362222df41033a958ac37b1655b5b56.png
I have been there. I lived in a hemotology oncology center for three months at 8 hours a day for chemotherapy. If you are going through something similar please know that my thoughts and prayers are with you.
To the 6 people who downvoted this…may you be mounted by rabid dogs.
Unless they’re into bestiality.
I have RSD ( Reflex Sympathetic Distrophy ) that has now been renamed to CRPS I have it in my Right leg and its slowly spreading, I have had it for 10 years got it from a Ladder accident.
I know what your going though, I hope you get the best of luck with your treatment.
Being a fellow CRPS member I can honestly say I hope to hear it works.
There is nothing here that I can do at the moment being the treatments approved here don’t work for me or will kill me as I am allergic to the stuff they use…
Please get well soon, I never like to hear someone else suffers from this shitty disease.
Fuck! Seriously!? That’s awful! I’m so sorry. :'( I wish there were something I could do. 🙁 It’s one the most, if not THE most, horrible disease I’ve heard of. :'( no one aside from violent rapists and child molesters deserve this hell! :'(
Even then I don’t know if I could wish this on even them.
I think they’re the fuckers who deserve this agony. I would give it to them in a heartbeat, but nobody else. Not even if they asked me for it. It’s too horrible of a disease.
Fair enough, and I can respect that opinion.
Personally I just think that a mental deficient person is not deserving of excruciating unending pain.
You too? Sorry to hear that. I didn’t know about CRPS. I just read @disqus_MzWQIPhs6y:disqus comment on it. I didn’t know there could be something so physically painful. This is awful disease to have to suffer through. I wish there were more options for treatment, something that would work on you.
Thank you, yeah its a very very bad disease, and its so unknown. The worst part being that it is a unseen disease so most people don’t believe you. I was in constant pain for aegis before i was diagnosed. There is no direct test to find it there is no cure (yet) it took aegis to find out what it was that I had and then to find out that there is no cure. Your heart drops its not an easy life.
I am currently in the process of writing a bit about myself If I remember I will try to link to it here when I am done.
Khloe honey, I don’t normally pray…in fact I never do, being an Atheist, but today I’ll make an exception my Lolsnapian/Facebook friend.
Awwwwwww!!!!!!! That’s so sweet! That made both Mimi and me go “AWWWWW!!!” 😀 <3
We got you boo boo! Best wishes to you, best of luck, SO many hugs, and all the love in the world. We’re all pulling for you, and we’ll be here for you the entire time with our funny pics and skewed humors. Here’s hoping that this is the path to seeing a vid of you riding your bike posted on here someday! <3
@disqus_MzWQIPhs6y:disqus do you still have your gofundme up?
Good luck, Black Swan. 🙂 Big hugs from us all and all the best!!
…And for those who downvoted this, go fuck yourselves with a cactus.
Lol! Thank you! XD
Thank you. <3 🙂 *gentle hugs*
Hey, that’s only a four-hour of train ride from where I live! Give or take. Good luck, and may the drugs be ever in your favor! 😀
Extreme uncontrolled pain is so many swear words worth of fucking awful, and oh my god do I hope this works out for you. Certainty of at least some improvement is such a rare thing to hear, and I’m actually a bit jealous.
Exactly! I’m hoping the claims are true! I have a fundraiser on youcaring.com you should consider starting an account. <3 start fundraising. It's what I had to do.
No known cure for what ails me, unfortunately. I just have to deal… and they can’t find a painkiller strong enough for me that won’t kill me or leave me stupefied and high.
(Fully detached sacroiliac ligament. Supposedly impossible, yet here I am.)
Jesus Christ that sounds agonizing! I’ll bet that rivals CRPS pain! :'( there isn’t a surgery they can do or anything!? :'(
Yeaaaaaah, on bad days it can get up there… I was actually wondering if the McGill scale had changed at some point, because reading up on CRPS and on your anecdotes in other comments, it seems absolute that you’re in way more pain than I am, since I’m still generally self-sufficient, just… fragile. But the last McGill I did on a 10/10 day was in the 50s. Thank god, 10/10 pain days (read: bedridden, whimpering, can’t hold a thought longer than 10 seconds or so) only happen a couple times a year or I’d probably kill myself. I didn’t ask because I didn’t want to detract from your pain, I was/am genuinely rooting for you with my post.
And nope, absolutely zilch can be done but rest, heat, and painkillers. I don’t know why, but as time goes on, while the number of sudden collapse/bedridden days decreases, painkillers can do less and less for the bad-but-still-hobbling days. I’m on a combo NSAID + muscle relaxant which doesn’t even touch the 8/10+ days anymore, and only knocks middling-level pain down by a notch or two… but I’ve literally tried every other NSAID out there, a couple of COX2 inhibitors, and the rest of them might as well be tic-tacs for all they help. I’ve had some opiates in the past and they barely did more than the NSAIDs, while making me useless. If I went on them long-term, I’d have to go on disability long-term… which I’m eligible for, but eff that. I’d go friggin nuts.
Oh I understand! Don’t ever feel like you can’t ask. This disease has moved my pain scale a couple of times and in the last year I’ve really begun to not be able to tell how much pain I’m in because I genuinely don’t remember what low pain is like.
Yup. So few meds do a damn thing! I’ve been on so many different ones. It wasn’t until this doc who finally put me on a combo of oxymorphone and clonidine that we found something that works some. But I mean, I still can’t drive or sit on the couch to watch tv for more than a few minutes! For me, it’s just spread and progressed, getting worse and worse. I hope that doesn’t ever happen to you.
I hate being stuck in bed. I miss school and hiking, biking, and bouldering, driving…I miss driving a LOT! I’m probably going to have to do some therapy when I get back to re-train my brain NOT to feel pain. That’s what they recommend anyway. After so many years it creates pain pathways that will have to be re-wired. 🙂 I hope I can get back to my life. And I hope yours never spreads or worsens like this. *gentle hugs*. <3
*many hugs back* I’m glad to see elsewhere that this seems to have made a difference for you already. I’m so happy for you.
And yeah… that whole pain scale thing… Worrisome, aint it?! I was discussing on here just last week how I broke my leg and walked it off because it didn’t seem to hurt enough… at some point that will get me in trouble.
I know what you mean. It can get scary at times how much we can handle…
Yeah… it’s definitely crazy and scary, at times, how much we can handle.
And thank you! *hugs back* I hope it can give everyone hope.
Wishing you all the very best with this procedure, and Godspeed.
How long will it be until the relief starts? Is it an immediate thing, or does it take time to work? (And as always, all my best wishes for %100 or close to it as you can get)
It can (and has) work immediately, but takes up to 6 months to reach full effect. I’ve hardly been limping today and that’s only after 1 treatment! I have 3 to go! I was able to walk into the cafe this morning! It’s miraculous! <3
That is awesome! I am really happy for you 🙂
Hope it works 100%
I don’t know you too well because of my only being on lolsnaps for two years, maybe more, but good luck ♥ε>
Thank you so much! <3
Wishing you all the best BlackSwan!
I don’t think we’ve ever interacted, and I know nothing of the condition but it truly sounds awful and I really hope this works out for you. Hope you have a speedy recovery!
Good luck, beautiful. Keep your head up, we are all in your corner
Hope all goes well! but yaay! pizza for brekkie 😉
Who dares to downvote the BlackSwan? Infidels!
You’re looking good, girl!
I wish you luck my friend! Hoping it really works good for you!
Thank you! Me too! So far it’s been amazing! I have nearly no limp today and was able to walk into the cafe and stand at the counter!!!! Maybe after the next one or two ill be able to walk the block TO the cafe!
That’s awesome! Glad it is working so far. :3
Me too! Maybe in 6 months I’ll be able to put up a pic of me riding my bike for the first time in 4 years. Next to that the last pic of my riding my bike when my son was an infant.
Damn, I wanna say a ‘Jose-like’ thing… but it’s not proper. ;~;
I am grateful for the respect you’ve shown. <3 Now just tell me what you were going to say because I'm too curious.
"maybe you can ride me instead~"
A hundred upvotes for this.
Aww! Thank you. 🙂
Hope this treatment works for you! All my best wishes for you an lots of hugs!! 😀 :3
May the Force be with You during this time. Sending you lots of love from Cape Town South Africa ❤❤
Nothing but good thoughts your way!
All the best! Hope you get well soon
Holy cow! I didn’t know all this. And it’s that painful! I wouldn’t know what I would do.
You poor thing. You had to endure so much pain! I really hope everything turns out okay.
Thank you hun. Yeah… It’s more painful than the chronic pain from amputation of a digit according to the McGill pain index. I have been planning my suicide for the last couple of years, until this treatment gave me hope again. I can’t stress how horrible this disease is.
This was from a flare a couple of months ago. The swelling in the left leg was obvious and agonizing! https://uploads.disquscdn.com/images/76f1730ed38b00f4963db97cafc0b5db8103aa498eba3c3648179c056233b420.jpg
I hope the treatment works out for you. I will keep you in my thoughts.
Aww! Ty! <3 <3 That's vey sweet of you. I'm lucky to have such a wonderful friend. <3
It also causes bone changes which i think it’s finally done with me. I’ve noticed last night that when standing straight my right knee has started turning and pointing toward the left leg. :'(
I am so sorry to hear that.
I am really bad at comforting others. But do know that I am really hoping for your treatment to go well from my heart.
That means more to me than all the beautiful words. <3 Thank you. <3 keeping fingers and toes crossed for that 80%! (Or 50% to consider a second round of treatments)
Good luck BlackSwan 🙂 we may not always agree, but to see that eager smile is really nice! I hope the treatments accomplish miracles and you become pain free!
Lol. Well that’s good! :3
If it works out, maybe you should ride me~ ;P (As if. Lol.)
Again… you wish ! XD
Indeed I do! So how often are you actually going to need to do this treatment? Or, y’know… Is expected to have to be done.
If I get 50%-80% I’ll consider a second round. If I get more than 80% I’ll be able to cope with it and move on with my life. Less than 50%… well we won’t discuss that option. Full remission? Well that’d be a goddamn miracle!
It’ll take up to 6 months to feel full effect of the treatment. So right around the time I first got the original injury, ironically. September/ October-ish 4 years later.
Well that’s good to hear at least. So after six months, depending on the improvement, is when you’ll chose whether or not to go back again, huh?
Yup. That’s the plan anyway. 🙂
Well, of course I hope for the best for you!
Thank you! I appreciate it! <3 I need as many people hoping as I can get! Lol.
Of course! 200 likes and you’ll be cured for sure! 😛
Lol! That’s not quite how that works… but positive thoughts, positive energy can’t hurt. 🙂
True, true. Positive energy is always something good.
Exactly. <3 🙂 I figure I need as much help as I can get to beat this fucking hell disease. Lol. Funny for any atheist to say something like that… xD
Heh. Well ‘positive energy’ isn’t exactly a ‘god’
Exactly, but I’ve heard some consider it in the same category despite energy being an actual thing.
Well I get why one might. I don’t think they belong in the same category, even tho I don’t quite believe in the ‘energy’ either. *shrug*
I believe that matter is reactive to other matter around it, including energy. That’s pretty much all…
Fair enough my friend, fair enough.
So now you will get a bunch of random people following your facebook page, but it is really us with our real names and stuff. I would love to follow, so add the guy who has a cute angel/devil kid picture going on. I hope it all goes well, and I will be following progress closely.
@disqus_MzWQIPhs6y:disqus a little late… best of luck, hope you’re doing great 🙂
Awesome 😀 … that’s the attitude girl haha… if you have a positive attitude it helps a lot when it comes to how our bodies react to certain treatments… I’m really happy for you 🙂 … you can do it, you WILL do it …
It’s so funny to me when people say I’m thinking positively. Lol! As a kid my mom would call me “negative Nancy” and “Debbie Downer” lol. I’ve just always said that I look at things realistically. That’s what I see it as, just being realistic. When they claim that 100% of people get 20%-100% of relief, it’s realistic to expect that. Lol. 🙂 I just can’t wait to see how much I get in 6 months. That’s how long they say it takes to reach full effect. It’ll be right around the time that I got the original injury! (Sept/Oct 2013. I can’t remember exactly at this point) I think that’s pretty cool!
I guess thinking realistically is the more mature option but given the fact that the world actually sucks (sometimes), if we’re always being realistic/negative then it affects our lives in some really shitty ways… I’m not talking about being super positive but once in a while hope for the best and actually believe it when it happens… dunno, maybe I’m crazy, but yeah… I’m sure you’ll be fine, some psychologists say that thinking positively has some weird/good effects in our surroundings… so you’ll be fine, I’m sure about it 🙂
Well thank you. The chances of that are high. 🙂 lol. <3 I really do appreciate it. <3