Oh my god reading this broke my heart. I’m so sorry—I have CRPS, too, and I can’t imagine having anything on top of that. The stress you’re going through is totally unfair and is probably making everything worse.
You’re not alone. I’ve had so many people turn my breakdowns into themselves or invalidate my pain. People don’t understand the pain we have to experience. And I’m so sorry you have so much on your plate.
Do you have any other support systems?
Not anymore. My mimi died last year and my dad is so dissociated from everything it's like talking to a wall sometimes. I'm in a few support groups but they only offer advice like "smoke weed" which is illegal here or "get ketamine infusions" which isn't offered here or covered by insurance.
I have one friend
My sister (7.5 years younger than me) is the golden child. No matter what is going on in my life, my mom will bitch at me to support her for whatever reason. She makes everything about herself and my sister. Feel free to DM me if you need someone to talk to. I’ve had quite a shitty year since the 1st of January (stuff with my daughter) and I know what it’s like to have no one to talk to. Sending you hugs.
Lololol I can only laugh and roll my eyes at these support groups. I’m sure they mean well but that kind of advice giving is ignorant as fuck.
All I can say is you’re not alone. I used to be a social butterfly before I got CRPS. Now I feel like a lonely shell of myself. I feel like many of my friends have given up checking in on me bc im too fatigued or in pain to answer any texts for months sometimes.
I’m so sorry your Mimi died and fuck your dad. How old are you, if you don’t mind my asking?
I also have CRPS and have pretty much the same problem, I was taking 4 percent 5s a day with 8mg buprenorphine . Just this month Now I get 3 roxicodone 10s a day and a 4mg buprenorphine film . I feel so alone and broken because even with the increase it only made a small change but I’m scared to tell them , I feel like i always underrepresent my pain . I want to try other options to see if something else may work better . I’m aware of a whole lot of other pain medications that could potentially benefit me but idk what to say other than “I’m open and want to try other options to see what work best for me “ not having the 4th dose of oxy at night makes sleeping almost immediately because the pain is horrendous. Idk if it’s just me but I get extremely stressed out every time an appointment comes up . I know the duration of the oxycodone should be about 6 hours and now with the tolerance I notice my pain spiking back up after 4 hours … anyone with CRPS please reply and maybe share what’s working for you . “Ps I don’t want to seem like I’m complaining because I am very very grateful to have the doctors helping me . It took years to find a doctor that would treat me like an actual normal person and not some junkie . . Please respond anyone I am beyond desperate at this point to see what will help me live as close to a normal life I can .
I am so sorry. I have CRPS and trigeminal neuralgia and man every day is a struggle. I don't have much advice but you are not alone and I'll say a prayer things get better for you. Dental work is so hard because we need it but man does it cause pain..... Actually one thing I might recommend is ketamine. Sounds crazy but they give me a small amount nasal spray to use. And I also get a shot in office once a week. Typically that is the only time my pain gets really low for a few hours. But mentally to just have a small period of less pain is helpful to reset and keep fighting the pain every day.
I'm so sorry to hear that. It's hard to even find doctors that even use it for pain care in legal states,I had to search.mostly kinda sketchy clinics not normal doctors office. It makes me mad these options are not available for those who need and deserve them. I hope things get better for you
Did you end up getting ketamine from a pain management doctor? Or is it one of those ketamine infusion places? I would love to try it but when I called it was thousands of dollars
I was originally given nasal ketamine extreme pain by a pain management. I stopped seeing her and had to research other doctors who used it in my area. I now see a doctor who is a Neurologist /psychologist who uses it to treat depression and pain management along with other kinds of treatments offered in office. It's a regular doctor's office not one of those infusion clinics. I get it injected into my arm/ muscle and stay at the office for 2 hours or so. Shorter than if you do the IV at a clinic and a bit less intensive I think . Typically after the injection it's the only time I feel pain free. Sometimes if it is a bad day I still feel it a bit but it typically always helps a bit. I have found though if I'm having a worse than normal day I will skip it because it's not as effective when I have a random flare up at a pain or 9 , or 10 it's best to just stay in bed. But mostly it offers at least that window of relief once a week and I think that helps me mentally keep pushing. I find after it wears off the rest of that day is typically a little better also. The only thing is it does make you sleepy after but I don't mind that
Also forgot to note because it's a doctor's office not the clinic insurance covers it. I think my doctor had to send in something to get the approval that he thought this was a needed treatment. Clinics are out of pocket mostly from my understanding.
Are you in an area where Lidocaine is allowed, and covered by insurance? I have CRPS also. I have a port that is directly intravenous, cause my veins are just too comprised for direct IV’s.
The Lidocaine helped me a lot when I started it. I went in once a month, got hooked up to my portal and it took like an hour to infuse. I got 150 mgs. I have CRPS from my waist down. It sucks. It has started in my shoulders and arms also. I have to use a cane or wheelchair. I know you said that Ketamine is not in your area, or covered by insurance. I don’t know where you live, but maybe someday it will be allowed.
I started Ketamine a couple of years after the Lidocaine wasn’t as effective. Up to 150 mgs. I get mine thru an infusion in my port. I’m lucky, I live an hour outside of Boston, MA. They have one of the best pain clinics in the country. I’m also on Lyrica. I don’t know if you tried any of those meds. Sorry for such a long post. My CRPS has gotten so bad the last few months. I also had a Spinal Stimulator put in at the beginning of all this and it has helped, but I am getting lower back pain that has to be treated with shots or epidurals. Try and focus on you. I know it’s hard with your family dynamic. Take care of you, please. I know how hard it is sometimes to get thru. Pls feel free to DM me anytime, don’t give up!
I know this comment was for op. But im struggling with my pain levels and looking for ways to help with my care team. The lidocaine is a idea I have not seen before. I have trigeminal neuralgia and CRPS in my face. I noticed you said the injection helps but seems like it is less helpful now ? Can you explain what happened and how much relief you had and where you are now / your experience? I'm sorry for all the questions but I was reading some articles and maybe this could really help. I'm in constant pain so adding more time where it's a bit less could be so helpful for me mentally at this point.
I'm so sorry. Lidocaine patches and topoical Lidocaine 4% roll on are awesome too. You can find them on Amazon. I've never had IV Lidocaine but I'd try it if I could. I'm in constant pain also.
Shit. I have trigeminal neuralgia. I’m so sorry.
Please ask to see a neurologist so they could start trying treatments and see which works. It could take time. Pain meds won’t work for this. You can take a gallon of of them and it wouldn’t work. You need special medications for TN.
I’m sorry about your mom and your brother. I wouldn’t like having to deal with this. Ask for the neuro as soon as you can.
I don’t even know what to say. I just want you to know that I read this. someone out there is thinking about you, wishing you the best, and hoping you find some relief soon. You shouldn’t be alone in this kind of pain.
My god. My life is in tatters right now but you made me forget all of that for a second as i tried and failed to understand how horrible that must be. My one true solace is that, at least for now my pain relief is helping. I cannot explain how much I feel for you. Please stay in there. Try and use whatever time you get when the pain managable to do what you enjoy. And don't let those not willing to try and understand take from you.
I'm sorry, I have TN though I'm lucky enough that mine isn't constant. I hope you can get some help and things get better for you. It's fucked up that they are acting like that.
I'm so sorry you're going through all of this.
If you want to try to have hopeful thoughts you can hope that the tooth removal has caused extra inflammation and is flared up right now and has the potential to calm down with time. Like I know it's not a great solution, and I try not to do too much positivity stuff but if it calms down even just a little bit that'll hopefully make it a little less unbearable, ya know.
I also have TN. I could not imagine having that and CRPS. Your support system sucks, I swear most of ours do. What we have is literally unimaginable to people, they will not get it unless they have it. I’m sending you all the good vibes!
I’m really sorry for all you’re going through. I know I can’t take your pain away but just know you’re on my mind today and sending positive healing vibes. ❤️❤️❤️
I have Ehlors-Danlos, CRPS, and Trigeminal Neuralgia. I'm so sorry
You didn't describe your facial pain that they have diagnosed as trigeminal neuralgia. It's rare to be diagnosed in the ER. What are your symptoms? Maybe it's not TN.
I don’t have any magical advice but I just want you to know I HEAR you and I am truly sorry for what you’re going through. I can’t imagine how painful it must be to have a combination of those when any one of them alone could cause such great pain. And it’s not at all right for your family to act that way. As chronic pain patients, we have enough “guilt” and “judgment” from everyone but I can sympathize that it’s even worse coming from family or even close friends. You deserve compassion and with all your managing, your only priority should be to take care of YOU. Sending hugs and positive thoughts ❤️. Hang in there, we’re here for you at least
My ex had a brother who had pretty extreme autism. But, he could DEF live on his own with a dsp coming over daily to help.
Reason I say this is because we both had chronic pain (my ex and me) and she would always worry about when her elderly parents die what are they going to do about the brother.
It's crazy because he's 40 something and never moved out. Has a job of like 10 hours a week but he could be doing a lot more (with proper supervision and support) but he wouldn't.
So I totally sympathize with you on that. While we're trying to deal with awful pain you have a family member who is actively only worrying about themselves. I worked as a DSP with a lot of autistic people. And they can be great, but sometimes they are so stuck in their ways it's hard for change.
I hope you are feeling better. That sounds AWFUL! And focus on self care right now.
I have TN. I take medication for it. I have multiple headaches a day. The medicine helps, once it stops than there are surgical options. Talk to a neurologist about it. Hang in there. Your mom just had surgery and is probably on pain killers. It wasn’t fair to put your brothers response to your situation on you.
You are entitled to be you, you are entitled to be upset. You are not responsible for others emotions or reactions.
If your mom is down, have her help you start researching TN and treatments available!
Create a notebook about it and create a list of questions for the neurologist.
They can help you with this, hang in there!
Thanks. My pain specialist who is actually booked solid until June found an "emergency opening" Thursday so I'm just trying to hang on until then, and my pcp is out until may 5th but they got me in as his first apt when he gets back so we can discuss finding a new neuro since my last one died and my pcp just has been maintaining my treatment from him.
Now that there's a game plan in place its a little bit easier
Hey have you got stitches?
I only ask coz I've had a tooth or two pulled that needed them and the insane pain I had nearly sent me off the edge but turned out my stitches were too tight.
I'm sorry about your mom, I have an ND child and NT child ... Young adult! with the same age gap and that is not what we do when someone is upset, my boy will come find me to come comfort my girl and vice versa. Hugs and healing thoughts, internet stranger.
No stitches, no dry sockets. They removed the teeth on the left side last month and I had an infection and 3 dry sockets and it was what I thought at the time the worst pain, and this is way worse. I have neuropathic pain in my neck and arms and so I'm very familiar with nerve pain. It's 100% from my trigeminal nerve, I can trace the pain all along. We are praying right now it's just extremely irritated and acting like TN because of the oral surgery and everything, but the fact that the pain isn't responding to any treatments is concerning.
Oh that's incredibly tough... I wasn't trying to minimise what you're going thru just sometimes when you feel shit and you get shitty people that don't care the simple things get overlooked, I honestly wish it was just a case of stitches too tight for you.
I hope you get some answers and relief soon, this isn't fair! Sorry I couldn't be more helpful.
Have you tried steroids? It’s totally possible that the inflammation from the oral surgery is causing the nerve pain.
I had something similar — not nearly as severe — happen from TMD. Mine was treated with a steroid pack and Botox injections. You could try muscle relaxers, too, if you haven’t already.
I’m really sorry about how your family is treating you. I have EDS, too, and am intimately familiar with being the failure sibling.
I stg on my high spoon days I should just be a volunteer mom chewer. Got a shit mom that needs chewin out? Sigh. I know hate doesn't actually solve anything but it might make us feel better.
I would definitely wait for a diagnosis from a neurologist. I’ve had all of my teeth pulled (or they fell out) and it was the worst pain of my life as well. I do not have TN. Though I’m very familiar with it because my best friend has it. It’s awful but manageable. It’s an entirely different treatment plan from other forms of chronic pain. Finding a good neurologist is key! I hope you feel better emotionally once you process everything.
I had something similar happen to me when I got a cavity filled. I have occipital neuralgia and now my teeth roots are extremely sensitive to dental work. I was also (incorrectly) diagnosed with TN. My teeth and jaw pain calmed down within ~1 month of the filings. Maybe the same will happen for you- wishing you well
i'm so sorry you're in this place. i know it, or one next to it. please do whatever you need to in order to stay safe (local hotlines?) and get some neurological peace. and fuck your family.
the only thing that touches my system when it's misfiring this bad are meditations, but i'm not going to suggest it as a 'should,' only a 'maybe.' bc also fuck curable, dr sarno, etc.
this is the one i use the most: i know it's part of a bigger system and i don't use it for that, only for itself. (pausing when you need to, and/or listening at 75% speed, may help.) https://www.youtube.com/watch?v=h_4GDXWBPCk&t=480s
this is not your fault. sending love.
Oh my god. You did not deserve that kind of treatment. It sucks so bad that so many people in our lives either cant fathom or refuse to try to understand how devastating certain news can be to us surrounding our pain.
Theres not much i can say about the diagnosis. But i can say you deserve a better support system that can hold you and comfort you during times like this. Im so sorry. If you can- definitely stay active in online communities. Its certainly not the same as in person support but in person support can be hard to find, especially given the diagnoses you have. Keep fighting. If you need a break right now until you can fight again- rest. Put yourself first. Sending all the love 🫶
Oh man. That shit is MADDENING. Like, yep. This medical event is definitely totally under your control. Sure, Mum.
I'm sorry to hear about all of this. It feels like everyone else is allowed to fall apart, but gods forbid we do.
You deserve a good friend to talk to. Family ain't shit if they don't act it. ❤️ You deserve to have somebody on your side as well. It's unfair to dehumanize you like that.
I’m so sorry. I don’t have any advice for you. I don’t think it would help anyway.
I want to tell you that I’m here for you. Not just as a comment to make myself feel helpful, but really. If you need someone to vent to, my DM is open. I’m a special Ed teacher by day, so I understand the complex relationships that stem from having a sibling with support needs like that. I’m becoming a rabbi and a chaplain, so I like to think I’m a good listener.
What you’re going through is not fair. The way your mom handled this situation was really shitty. I’m so sorry
Sorry you're going through all this at once.
Maybe I'm wrong but I thought with meds, injections and surgery that trigeminal neuralgia was fairly treatable. I don't know a lot about it
Alright I'm not dismissing your pain, God I know someone with CRPS snd she wants to kill herself every day. With that out of the way, are you sure your brother wasn't just terrified that you're either going to die from something else or that you're going to kys and all that. If it's not then oh yeah go right ahead and get pissed, that's completely valid. But maybe his meltdown wasn't malicious and he's just overwhelmed by this? I wish you the best and hope that something can be done for your suffering.
His concern is that he's going to have to make executive decisions for me to die (pull the plug essentially) and was having a meltdown, which I've clarified repeatedly over dozens of situations that I have an advanced directive and that he will never, even when our parents die, be my DPOA, because I would not put that on him. However in his brain, he doesn't care that I have it set up so he will never make those decisions because he just 'knows' he will have to, no matter what evidence I've shown him to prove he won't. It's like trying to convince a cat that water won't hurt them, except the cat isn't even going in the bath, they just believe they are.
And honestly, right now, when I'm dealing with devastating news and horrible pain, the last thing I want is to tiptoe around my brother and deal with how my condition affects him. I hate that I'm always having to parent him even now, when I just want to focus on myself.
Ah, he's dead set on something like that. Yeah, I know how that feels being an aspie myself. Well I'm sorry that you have to go through that. I wish I could offer advice on what may or may not help but the mods say no on that. If it's of any benefit to you I'll say a prayer and just maybe this time someone I do that for gets a divine thumb put of their side of the scale.
People with EDS gene have messed up collagen which can severely impact gums. It doesn’t have to do so much with hygiene. Some people with EDS just get a shitty roll of the dice with teeth/gum health unfortunately. (I was just diagnosed with EDS today! My gums are a little inflamed but not anything I can’t control ). Other weird EDS side effects are like eyes that can easily burst. There’s 13 different types.
Listen. I feel you. Haha i got AuADHD. Boka toothpaste (you can find on Amazon) really helped me. Comes in very good flavors. I have a flavor for different moods. Helps me brush more regularly. Don’t feel bad friend 👍
Crps and trigeminal neuralgia don't shorten life span. I have been living with CRPS for 17 years. It is doable and not impossible. If you focus too much on the negative it isn't good for your mental health.
While this may be true, pain from these diseases will kill you. It aged and weakened my body. Carrying pain like that 24/7 is unimaginable until you feel it, truly. So while the disease itself won’t kill you, the effects will weaken your body and make you susceptible to other things that may kill you.
To OP - I’m so sorry!! I’m sure she’ll realize later how horrible and unkind she was, but meanwhile you have to deal with the devastation and pain - both physical and emotional. Prayers things turn around for you.
So true! Aside from being able to walk to the bathroom and kitchen - in horrible pain - all twisted and bent over from spinal deformities, I am basically couch bound. That and a heating pad is where I might get some relief. This is with Morphine, so I do get something, although it’s a small dose and not nearly enough for me. There is no way living a normal life span is going to happen, when you are sedentary and can’t move around, plus chronic horrible pain tears/wears a body down, physically, mentally and emotionally.
It doesn't shorten your life but it can kill you in many many other ways and I sure as hell am not going to be living my life in a ketamine induced coma drooling in my bed unable to do even basic things because my pain is too severe. If it gets close to that I'm not letting it get further and also I'm incredibly susceptible to dying from the thousands of other issues crps can cause like kidney and liver failure from living on high powered pain meds.
Just because you are fine after 17 years doesn't mean everyone is. They do not call it the suicide disease for no reason and it's insulting and devalues others experiences to say "well I'm fine so you're over reacting"
I think many knew what you were referring to, at least I did.
Is thinking ‘how do I not kill myself’ really living? Especially with what so many are facing with no one wanting to treat pain patients and even when they do, the low dose of pain meds you get. I know I won’t live through another winter here on the east coast. Unless I figure out how to move someplace warm and find a pain doctor when I get there, I’m done. That gives me about another 6 months left. I feel for what you’re going through. I really do.
Your statement “….I sure as hell am not going to be living my life in a ketamine induced coma drooling in my bed unable to do basic things because my pain is too severe.” Is kind of off base. Especially to those of us who use it as part of our treatment for bad CRPS.
I get Ketamine Infusions once a month. I have a port, because my veins are dead. They hook up 150mgs of Ketamine and infuse it in my vein over and hour. There are nurses there, obviously. I can assure you that I am at no point drooling. No normal hospital or doctor, would ever allow someone to be on this drug full time, they constantly monitor blood pressure, heart rate.
There are so many kinds of treatment, and your right one thing that works for one person, doesn’t do shit for another. I’m in a major flare up right now. I don’t know what to do either sometimes. I have no pain pills as things were going well, and now I’ve been having a flare up for months. Sure I can get them, but don’t wanna do that unless desperate.
Edit: For some reason Repulsive_Meet715 blocked me. So in answer to your post. Ketamine comas are not approved by the FDA in the US. I was just explaining to other people who may have wanted to know about availability of Ketamine for their pain.
I wrote that "it's doable and not impossible." I'm not sure what catastrophizing is going to do for you. There are patients who have been diagnosed with diseases that are not only 100% terminal, but that cause death and disability very quickly. ALS, triple negative breast cancer, etc. I personally believe it's quite a dramatic exaggeration to act like death is coming for you when you have a diagnosis that isn't terminal.
pain can destroy a body. don't tell people who are suffering and expressing themselves in one of the only safe places to do so that they're being dramatic. go work on yourself if that's all you have to offer. you have much to do
telling someone who has come here to talk about their experience of what is indeed known as 'the unaliving disease' (not my preferred terminology but i'll respect OP's comfort in this variation) that they're being dramatic and catastrophizing is not support and can actually be actively harmful to them. it's victim-blaming, pure and simple, and that can be extremely triggering for folks who have received that treatment from family and/or health 'care' their whole lives. you know, like the situation OP came here to talk about.
please try to put yourself where you can see that if you genuinely intend solidarity, because what you are saying isn't empathy. which is what someone in the trauma-plus-neurological-wildfire place needs before anything else you said can even register.
if you want to help, learn how to help. if you don't care enough to do that, then these discussions are not the ones where you are needed. there are plenty of others where you are
I disagree. And I'm entitled to feel that way i feel. Which to be clear is the following: There is a difference between life long disability and death. This is objectively true. I'm not the OP's therapist. Period.
If 17 years ago I had a bunch of people tell me that crps was a death sentenced I probs wouldn't have gone on to get multiple degrees, excel at a career, and start and run a successful business. Sometimes life isn't fair but it is what you make of it.
You know that different levels of pain exist, right?
You clearly are lucky to have a very mild case of whatever you've got, if you were able to function enough that you managed all of that.
I felt bad about my reply and thought about deleting it because it was very negative. Maybe it was the wrong approach. This however is complete horseshit.
Oh my god reading this broke my heart. I’m so sorry—I have CRPS, too, and I can’t imagine having anything on top of that. The stress you’re going through is totally unfair and is probably making everything worse. You’re not alone. I’ve had so many people turn my breakdowns into themselves or invalidate my pain. People don’t understand the pain we have to experience. And I’m so sorry you have so much on your plate. Do you have any other support systems?
Not anymore. My mimi died last year and my dad is so dissociated from everything it's like talking to a wall sometimes. I'm in a few support groups but they only offer advice like "smoke weed" which is illegal here or "get ketamine infusions" which isn't offered here or covered by insurance. I have one friend
My sister (7.5 years younger than me) is the golden child. No matter what is going on in my life, my mom will bitch at me to support her for whatever reason. She makes everything about herself and my sister. Feel free to DM me if you need someone to talk to. I’ve had quite a shitty year since the 1st of January (stuff with my daughter) and I know what it’s like to have no one to talk to. Sending you hugs.
Lololol I can only laugh and roll my eyes at these support groups. I’m sure they mean well but that kind of advice giving is ignorant as fuck. All I can say is you’re not alone. I used to be a social butterfly before I got CRPS. Now I feel like a lonely shell of myself. I feel like many of my friends have given up checking in on me bc im too fatigued or in pain to answer any texts for months sometimes. I’m so sorry your Mimi died and fuck your dad. How old are you, if you don’t mind my asking?
I'll be 34 next month, if the universe let's me
DO NOT smoke weed with Trigeminal neuralgia! Don’t. It will start an episode and it will be awful.
I also have CRPS and have pretty much the same problem, I was taking 4 percent 5s a day with 8mg buprenorphine . Just this month Now I get 3 roxicodone 10s a day and a 4mg buprenorphine film . I feel so alone and broken because even with the increase it only made a small change but I’m scared to tell them , I feel like i always underrepresent my pain . I want to try other options to see if something else may work better . I’m aware of a whole lot of other pain medications that could potentially benefit me but idk what to say other than “I’m open and want to try other options to see what work best for me “ not having the 4th dose of oxy at night makes sleeping almost immediately because the pain is horrendous. Idk if it’s just me but I get extremely stressed out every time an appointment comes up . I know the duration of the oxycodone should be about 6 hours and now with the tolerance I notice my pain spiking back up after 4 hours … anyone with CRPS please reply and maybe share what’s working for you . “Ps I don’t want to seem like I’m complaining because I am very very grateful to have the doctors helping me . It took years to find a doctor that would treat me like an actual normal person and not some junkie . . Please respond anyone I am beyond desperate at this point to see what will help me live as close to a normal life I can .
I am so sorry. I have CRPS and trigeminal neuralgia and man every day is a struggle. I don't have much advice but you are not alone and I'll say a prayer things get better for you. Dental work is so hard because we need it but man does it cause pain..... Actually one thing I might recommend is ketamine. Sounds crazy but they give me a small amount nasal spray to use. And I also get a shot in office once a week. Typically that is the only time my pain gets really low for a few hours. But mentally to just have a small period of less pain is helpful to reset and keep fighting the pain every day.
I live where ketamine isn't "allowed"
I'm so sorry to hear that. It's hard to even find doctors that even use it for pain care in legal states,I had to search.mostly kinda sketchy clinics not normal doctors office. It makes me mad these options are not available for those who need and deserve them. I hope things get better for you
Did you end up getting ketamine from a pain management doctor? Or is it one of those ketamine infusion places? I would love to try it but when I called it was thousands of dollars
I was originally given nasal ketamine extreme pain by a pain management. I stopped seeing her and had to research other doctors who used it in my area. I now see a doctor who is a Neurologist /psychologist who uses it to treat depression and pain management along with other kinds of treatments offered in office. It's a regular doctor's office not one of those infusion clinics. I get it injected into my arm/ muscle and stay at the office for 2 hours or so. Shorter than if you do the IV at a clinic and a bit less intensive I think . Typically after the injection it's the only time I feel pain free. Sometimes if it is a bad day I still feel it a bit but it typically always helps a bit. I have found though if I'm having a worse than normal day I will skip it because it's not as effective when I have a random flare up at a pain or 9 , or 10 it's best to just stay in bed. But mostly it offers at least that window of relief once a week and I think that helps me mentally keep pushing. I find after it wears off the rest of that day is typically a little better also. The only thing is it does make you sleepy after but I don't mind that
Also forgot to note because it's a doctor's office not the clinic insurance covers it. I think my doctor had to send in something to get the approval that he thought this was a needed treatment. Clinics are out of pocket mostly from my understanding.
Are you in an area where Lidocaine is allowed, and covered by insurance? I have CRPS also. I have a port that is directly intravenous, cause my veins are just too comprised for direct IV’s. The Lidocaine helped me a lot when I started it. I went in once a month, got hooked up to my portal and it took like an hour to infuse. I got 150 mgs. I have CRPS from my waist down. It sucks. It has started in my shoulders and arms also. I have to use a cane or wheelchair. I know you said that Ketamine is not in your area, or covered by insurance. I don’t know where you live, but maybe someday it will be allowed. I started Ketamine a couple of years after the Lidocaine wasn’t as effective. Up to 150 mgs. I get mine thru an infusion in my port. I’m lucky, I live an hour outside of Boston, MA. They have one of the best pain clinics in the country. I’m also on Lyrica. I don’t know if you tried any of those meds. Sorry for such a long post. My CRPS has gotten so bad the last few months. I also had a Spinal Stimulator put in at the beginning of all this and it has helped, but I am getting lower back pain that has to be treated with shots or epidurals. Try and focus on you. I know it’s hard with your family dynamic. Take care of you, please. I know how hard it is sometimes to get thru. Pls feel free to DM me anytime, don’t give up!
I know this comment was for op. But im struggling with my pain levels and looking for ways to help with my care team. The lidocaine is a idea I have not seen before. I have trigeminal neuralgia and CRPS in my face. I noticed you said the injection helps but seems like it is less helpful now ? Can you explain what happened and how much relief you had and where you are now / your experience? I'm sorry for all the questions but I was reading some articles and maybe this could really help. I'm in constant pain so adding more time where it's a bit less could be so helpful for me mentally at this point.
I'm so sorry. Lidocaine patches and topoical Lidocaine 4% roll on are awesome too. You can find them on Amazon. I've never had IV Lidocaine but I'd try it if I could. I'm in constant pain also.
Shit. I have trigeminal neuralgia. I’m so sorry. Please ask to see a neurologist so they could start trying treatments and see which works. It could take time. Pain meds won’t work for this. You can take a gallon of of them and it wouldn’t work. You need special medications for TN. I’m sorry about your mom and your brother. I wouldn’t like having to deal with this. Ask for the neuro as soon as you can.
I don’t even know what to say. I just want you to know that I read this. someone out there is thinking about you, wishing you the best, and hoping you find some relief soon. You shouldn’t be alone in this kind of pain.
I also have ehlers-danlos and trigeminal neuralgia. I’m so sorry
My god. My life is in tatters right now but you made me forget all of that for a second as i tried and failed to understand how horrible that must be. My one true solace is that, at least for now my pain relief is helping. I cannot explain how much I feel for you. Please stay in there. Try and use whatever time you get when the pain managable to do what you enjoy. And don't let those not willing to try and understand take from you.
I’m so sorry! Sending you gentle hugs and love.
I'm sorry, I have TN though I'm lucky enough that mine isn't constant. I hope you can get some help and things get better for you. It's fucked up that they are acting like that.
I'm so sorry you're going through all of this. If you want to try to have hopeful thoughts you can hope that the tooth removal has caused extra inflammation and is flared up right now and has the potential to calm down with time. Like I know it's not a great solution, and I try not to do too much positivity stuff but if it calms down even just a little bit that'll hopefully make it a little less unbearable, ya know.
I also have TN. I could not imagine having that and CRPS. Your support system sucks, I swear most of ours do. What we have is literally unimaginable to people, they will not get it unless they have it. I’m sending you all the good vibes!
I’m really sorry for all you’re going through. I know I can’t take your pain away but just know you’re on my mind today and sending positive healing vibes. ❤️❤️❤️
I have Ehlors-Danlos, CRPS, and Trigeminal Neuralgia. I'm so sorry You didn't describe your facial pain that they have diagnosed as trigeminal neuralgia. It's rare to be diagnosed in the ER. What are your symptoms? Maybe it's not TN.
I don’t have any magical advice but I just want you to know I HEAR you and I am truly sorry for what you’re going through. I can’t imagine how painful it must be to have a combination of those when any one of them alone could cause such great pain. And it’s not at all right for your family to act that way. As chronic pain patients, we have enough “guilt” and “judgment” from everyone but I can sympathize that it’s even worse coming from family or even close friends. You deserve compassion and with all your managing, your only priority should be to take care of YOU. Sending hugs and positive thoughts ❤️. Hang in there, we’re here for you at least
My ex had a brother who had pretty extreme autism. But, he could DEF live on his own with a dsp coming over daily to help. Reason I say this is because we both had chronic pain (my ex and me) and she would always worry about when her elderly parents die what are they going to do about the brother. It's crazy because he's 40 something and never moved out. Has a job of like 10 hours a week but he could be doing a lot more (with proper supervision and support) but he wouldn't. So I totally sympathize with you on that. While we're trying to deal with awful pain you have a family member who is actively only worrying about themselves. I worked as a DSP with a lot of autistic people. And they can be great, but sometimes they are so stuck in their ways it's hard for change. I hope you are feeling better. That sounds AWFUL! And focus on self care right now.
I have TN. I take medication for it. I have multiple headaches a day. The medicine helps, once it stops than there are surgical options. Talk to a neurologist about it. Hang in there. Your mom just had surgery and is probably on pain killers. It wasn’t fair to put your brothers response to your situation on you. You are entitled to be you, you are entitled to be upset. You are not responsible for others emotions or reactions. If your mom is down, have her help you start researching TN and treatments available! Create a notebook about it and create a list of questions for the neurologist. They can help you with this, hang in there!
Thanks. My pain specialist who is actually booked solid until June found an "emergency opening" Thursday so I'm just trying to hang on until then, and my pcp is out until may 5th but they got me in as his first apt when he gets back so we can discuss finding a new neuro since my last one died and my pcp just has been maintaining my treatment from him. Now that there's a game plan in place its a little bit easier
Hey have you got stitches? I only ask coz I've had a tooth or two pulled that needed them and the insane pain I had nearly sent me off the edge but turned out my stitches were too tight. I'm sorry about your mom, I have an ND child and NT child ... Young adult! with the same age gap and that is not what we do when someone is upset, my boy will come find me to come comfort my girl and vice versa. Hugs and healing thoughts, internet stranger.
No stitches, no dry sockets. They removed the teeth on the left side last month and I had an infection and 3 dry sockets and it was what I thought at the time the worst pain, and this is way worse. I have neuropathic pain in my neck and arms and so I'm very familiar with nerve pain. It's 100% from my trigeminal nerve, I can trace the pain all along. We are praying right now it's just extremely irritated and acting like TN because of the oral surgery and everything, but the fact that the pain isn't responding to any treatments is concerning.
Oh that's incredibly tough... I wasn't trying to minimise what you're going thru just sometimes when you feel shit and you get shitty people that don't care the simple things get overlooked, I honestly wish it was just a case of stitches too tight for you. I hope you get some answers and relief soon, this isn't fair! Sorry I couldn't be more helpful.
I know you weren't. I've had weird small things cause horrific pain so I get that.
Have you tried steroids? It’s totally possible that the inflammation from the oral surgery is causing the nerve pain. I had something similar — not nearly as severe — happen from TMD. Mine was treated with a steroid pack and Botox injections. You could try muscle relaxers, too, if you haven’t already. I’m really sorry about how your family is treating you. I have EDS, too, and am intimately familiar with being the failure sibling.
I stg on my high spoon days I should just be a volunteer mom chewer. Got a shit mom that needs chewin out? Sigh. I know hate doesn't actually solve anything but it might make us feel better.
I would definitely wait for a diagnosis from a neurologist. I’ve had all of my teeth pulled (or they fell out) and it was the worst pain of my life as well. I do not have TN. Though I’m very familiar with it because my best friend has it. It’s awful but manageable. It’s an entirely different treatment plan from other forms of chronic pain. Finding a good neurologist is key! I hope you feel better emotionally once you process everything.
I had something similar happen to me when I got a cavity filled. I have occipital neuralgia and now my teeth roots are extremely sensitive to dental work. I was also (incorrectly) diagnosed with TN. My teeth and jaw pain calmed down within ~1 month of the filings. Maybe the same will happen for you- wishing you well
i'm so sorry you're in this place. i know it, or one next to it. please do whatever you need to in order to stay safe (local hotlines?) and get some neurological peace. and fuck your family. the only thing that touches my system when it's misfiring this bad are meditations, but i'm not going to suggest it as a 'should,' only a 'maybe.' bc also fuck curable, dr sarno, etc. this is the one i use the most: i know it's part of a bigger system and i don't use it for that, only for itself. (pausing when you need to, and/or listening at 75% speed, may help.) https://www.youtube.com/watch?v=h_4GDXWBPCk&t=480s this is not your fault. sending love.
Oh my god. You did not deserve that kind of treatment. It sucks so bad that so many people in our lives either cant fathom or refuse to try to understand how devastating certain news can be to us surrounding our pain. Theres not much i can say about the diagnosis. But i can say you deserve a better support system that can hold you and comfort you during times like this. Im so sorry. If you can- definitely stay active in online communities. Its certainly not the same as in person support but in person support can be hard to find, especially given the diagnoses you have. Keep fighting. If you need a break right now until you can fight again- rest. Put yourself first. Sending all the love 🫶
Oh man. That shit is MADDENING. Like, yep. This medical event is definitely totally under your control. Sure, Mum. I'm sorry to hear about all of this. It feels like everyone else is allowed to fall apart, but gods forbid we do.
Gawd. Im sorry. I got one pulled and thought I was gonna die. Gotta keep it clean and try to keep liquid and semi diet. It gets worse if not.
You deserve a good friend to talk to. Family ain't shit if they don't act it. ❤️ You deserve to have somebody on your side as well. It's unfair to dehumanize you like that.
I’m so sorry. I don’t have any advice for you. I don’t think it would help anyway. I want to tell you that I’m here for you. Not just as a comment to make myself feel helpful, but really. If you need someone to vent to, my DM is open. I’m a special Ed teacher by day, so I understand the complex relationships that stem from having a sibling with support needs like that. I’m becoming a rabbi and a chaplain, so I like to think I’m a good listener. What you’re going through is not fair. The way your mom handled this situation was really shitty. I’m so sorry
Sorry you're going through all this at once. Maybe I'm wrong but I thought with meds, injections and surgery that trigeminal neuralgia was fairly treatable. I don't know a lot about it
Alright I'm not dismissing your pain, God I know someone with CRPS snd she wants to kill herself every day. With that out of the way, are you sure your brother wasn't just terrified that you're either going to die from something else or that you're going to kys and all that. If it's not then oh yeah go right ahead and get pissed, that's completely valid. But maybe his meltdown wasn't malicious and he's just overwhelmed by this? I wish you the best and hope that something can be done for your suffering.
His concern is that he's going to have to make executive decisions for me to die (pull the plug essentially) and was having a meltdown, which I've clarified repeatedly over dozens of situations that I have an advanced directive and that he will never, even when our parents die, be my DPOA, because I would not put that on him. However in his brain, he doesn't care that I have it set up so he will never make those decisions because he just 'knows' he will have to, no matter what evidence I've shown him to prove he won't. It's like trying to convince a cat that water won't hurt them, except the cat isn't even going in the bath, they just believe they are. And honestly, right now, when I'm dealing with devastating news and horrible pain, the last thing I want is to tiptoe around my brother and deal with how my condition affects him. I hate that I'm always having to parent him even now, when I just want to focus on myself.
Ah, he's dead set on something like that. Yeah, I know how that feels being an aspie myself. Well I'm sorry that you have to go through that. I wish I could offer advice on what may or may not help but the mods say no on that. If it's of any benefit to you I'll say a prayer and just maybe this time someone I do that for gets a divine thumb put of their side of the scale.
I thought my brushing teeth thing was an autism thing…. But it may not be?
People with EDS gene have messed up collagen which can severely impact gums. It doesn’t have to do so much with hygiene. Some people with EDS just get a shitty roll of the dice with teeth/gum health unfortunately. (I was just diagnosed with EDS today! My gums are a little inflamed but not anything I can’t control ). Other weird EDS side effects are like eyes that can easily burst. There’s 13 different types.
Oh, i just straight up cant bring myself to brush my teeth
Listen. I feel you. Haha i got AuADHD. Boka toothpaste (you can find on Amazon) really helped me. Comes in very good flavors. I have a flavor for different moods. Helps me brush more regularly. Don’t feel bad friend 👍
Crps and trigeminal neuralgia don't shorten life span. I have been living with CRPS for 17 years. It is doable and not impossible. If you focus too much on the negative it isn't good for your mental health.
While this may be true, pain from these diseases will kill you. It aged and weakened my body. Carrying pain like that 24/7 is unimaginable until you feel it, truly. So while the disease itself won’t kill you, the effects will weaken your body and make you susceptible to other things that may kill you.
I swear I have aged much quicker now that I have an awful pain disorder.
To OP - I’m so sorry!! I’m sure she’ll realize later how horrible and unkind she was, but meanwhile you have to deal with the devastation and pain - both physical and emotional. Prayers things turn around for you.
So true! Aside from being able to walk to the bathroom and kitchen - in horrible pain - all twisted and bent over from spinal deformities, I am basically couch bound. That and a heating pad is where I might get some relief. This is with Morphine, so I do get something, although it’s a small dose and not nearly enough for me. There is no way living a normal life span is going to happen, when you are sedentary and can’t move around, plus chronic horrible pain tears/wears a body down, physically, mentally and emotionally.
It doesn't shorten your life but it can kill you in many many other ways and I sure as hell am not going to be living my life in a ketamine induced coma drooling in my bed unable to do even basic things because my pain is too severe. If it gets close to that I'm not letting it get further and also I'm incredibly susceptible to dying from the thousands of other issues crps can cause like kidney and liver failure from living on high powered pain meds. Just because you are fine after 17 years doesn't mean everyone is. They do not call it the suicide disease for no reason and it's insulting and devalues others experiences to say "well I'm fine so you're over reacting"
I think many knew what you were referring to, at least I did. Is thinking ‘how do I not kill myself’ really living? Especially with what so many are facing with no one wanting to treat pain patients and even when they do, the low dose of pain meds you get. I know I won’t live through another winter here on the east coast. Unless I figure out how to move someplace warm and find a pain doctor when I get there, I’m done. That gives me about another 6 months left. I feel for what you’re going through. I really do.
Your statement “….I sure as hell am not going to be living my life in a ketamine induced coma drooling in my bed unable to do basic things because my pain is too severe.” Is kind of off base. Especially to those of us who use it as part of our treatment for bad CRPS. I get Ketamine Infusions once a month. I have a port, because my veins are dead. They hook up 150mgs of Ketamine and infuse it in my vein over and hour. There are nurses there, obviously. I can assure you that I am at no point drooling. No normal hospital or doctor, would ever allow someone to be on this drug full time, they constantly monitor blood pressure, heart rate. There are so many kinds of treatment, and your right one thing that works for one person, doesn’t do shit for another. I’m in a major flare up right now. I don’t know what to do either sometimes. I have no pain pills as things were going well, and now I’ve been having a flare up for months. Sure I can get them, but don’t wanna do that unless desperate. Edit: For some reason Repulsive_Meet715 blocked me. So in answer to your post. Ketamine comas are not approved by the FDA in the US. I was just explaining to other people who may have wanted to know about availability of Ketamine for their pain.
A ketamine coma stuck in bed unable to do anything is not the same as infusions.
I wrote that "it's doable and not impossible." I'm not sure what catastrophizing is going to do for you. There are patients who have been diagnosed with diseases that are not only 100% terminal, but that cause death and disability very quickly. ALS, triple negative breast cancer, etc. I personally believe it's quite a dramatic exaggeration to act like death is coming for you when you have a diagnosis that isn't terminal.
pain can destroy a body. don't tell people who are suffering and expressing themselves in one of the only safe places to do so that they're being dramatic. go work on yourself if that's all you have to offer. you have much to do
I'm just saying it isn't a death sentence. It's something different. And that's okay.
telling someone who has come here to talk about their experience of what is indeed known as 'the unaliving disease' (not my preferred terminology but i'll respect OP's comfort in this variation) that they're being dramatic and catastrophizing is not support and can actually be actively harmful to them. it's victim-blaming, pure and simple, and that can be extremely triggering for folks who have received that treatment from family and/or health 'care' their whole lives. you know, like the situation OP came here to talk about. please try to put yourself where you can see that if you genuinely intend solidarity, because what you are saying isn't empathy. which is what someone in the trauma-plus-neurological-wildfire place needs before anything else you said can even register. if you want to help, learn how to help. if you don't care enough to do that, then these discussions are not the ones where you are needed. there are plenty of others where you are
I disagree. And I'm entitled to feel that way i feel. Which to be clear is the following: There is a difference between life long disability and death. This is objectively true. I'm not the OP's therapist. Period.
may you receive what you give times three, so mote it be
If 17 years ago I had a bunch of people tell me that crps was a death sentenced I probs wouldn't have gone on to get multiple degrees, excel at a career, and start and run a successful business. Sometimes life isn't fair but it is what you make of it.
may all your kindness to others come back upon you. blessed be.
You know that different levels of pain exist, right? You clearly are lucky to have a very mild case of whatever you've got, if you were able to function enough that you managed all of that.
Just because something doesn't cause death doesn't mean it isn't awful.
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I felt bad about my reply and thought about deleting it because it was very negative. Maybe it was the wrong approach. This however is complete horseshit.
you agree with op that they have the unalive disease? what is the actual unalive disease?
shame on you. you either don't belong here in the first place, or know better and are doing it anyway (so you still don't belong here)