Physical pain is horrible. I have CRPS in both legs, it's the highest on the pain scale, completely misunderstood by most doctors and commonly called the suicide disease. I want my legs removed. I think it would greatly reduce my suicidal thoughts and my pain. Phantom limb pain is actually less painful than what I already deal with constantly. I just don't understand why doctors have to put their own opinion in it. Sure my life would be different but at least I'd still be living. I don't think they get it. They act like it's all in my head. It isn't. The physical pain is getting to be too much for me. I'm just so tired of hurting every second of the day. I asked my husband if he would help me cut them off and of course he said no. He understands that I'm hurting but I don't think he realizes how much. It's hard. When I wake up in the morning I wish I didn't. I think about ways to take myself out everyday. Yeah there are good times and memories I'm glad I've made but it's all shaded with pain. If the doctors would just listen to me and not treat me as if this is a mental issue I could be actually enjoying my life. I do battle with depression and anxiety but the physical pain is completely out of my control and unable to be fixed. I feel like if I keep expressing to the doctor I want my legs gone that he is going to try to have me committed instead of actually helping me. I've tried to get my mental health on track. I see a therapist. But its not the reason I want to end my life so there isn't much she can help me with. Most of my depression and anxiety are because of the physical pain... And if I could just get rid of the pain I feel like the rest would fall into place. If I can't get relief soon, I'm going to have to make some plans. I don't want to leave my family. I want to see my kids grow up and I want to enjoy my life. The only thing stopping me are my legs.
I had never heard of CRPS before. I read into a bit and I can only say I'm so sorry you're going through all that. I don't know what country you live in or what it takes to possibly convince your doctor it is the correct solution to do so (If it is, I'm obviously not an expert). I wish you all the best and I hope that you can get the correct treatment for you. Stay strong!
I live in USA. Chronic pain patients have been dealing with a lot of crap since the "opioid war". It was hard enough having to go to a pain clinic to get meds but then they look at you like you are an addict, drug tests all the time... They don't actually try to help. There isn't a cure for CRPS so I guess there isn't much they can actually do for me. But I do know that nothing has worked. I refuse to get an implant because my insurance sucks and if I lose my insurance I'm stuck with an implant I can't manage. Maybe if I agreed the doctors would try it realize it isn't going to work(it only reduces pain at most 40%) and just do what I'm asking. I've seen quite a bit of ppl that have had amputation and now have zero pain. The only real risk is that the CRPS isn't really gone and could spread to another area of my body. Some have it in their organs. Idk how they deal with that. Sometimes I feel like I'm just whining and then I remember that I'm dealing with the highest pain there is so I have a right to b*tch. Its destroying every aspect of my life. This past year has been the worst it's ever been. I'm not sure how much more I can take.
FuneralCry
Just wanting some peace
- Sep 24, 2020
- 37,145
That sounds really horrible what you are going through. Nobody should have to suffer like that. I'm sorry you have to deal with this. The human body is certainly capable of torturing us. Whatever happens, I wish you the best.
Dot
Info abt typng styl on prfle.
- Sep 26, 2021
- 2,833
D/ u knw if thre ws n.e.thng tht trggrd ur c.r.p.s - lke srgry or accdnt or trma of n.e. knd
bear_trapped
taking it one day at a time
- Feb 13, 2020
- 70
crps sounds terrible to deal with, and i'm sorry you're struggling with the pain. i'm in a similar position and also wish i could get my right leg amputated. dealing with constant physical pain every day takes a a huge toll on your mental health and it's not easy at all. i hope all works out for you, best of luck
WhiteRabbit
I'm late, i'm late. For a very important date.
- Feb 12, 2019
- 1,386
I'm in pain management too. It sucks and they tried to get me to do that stimulator implant thing, but I said no. I heard it stops working eventually.
Doesn't CRPS spread if you have you legs amputated? I only know a little bit about it.
Doesn't CRPS spread if you have you legs amputated? I only know a little bit about it.
I had surgery on my left ankle. Within 3weeks I was diagnosed with CRPS. During the time I wasn't able to walk on my left, the tendon on the bottom of my right foot snapped. The crps spread to the right foot. It stayed in my feet/ankles until about 4 yrs ago when I broke my right leg. It spread up both legs and has currently stopped in my thighs. I have been having increased back pain as well. Not sure if it's from previous back problems or if the crps is creeping up my torso.
Yes it definitely has impacted my mental health. I hope it works out for you as well. At this point if I owned a saw I would probably try to amputate them myself.
Yes Crps can spread to any part of the body. Even after amputation. But I think it depends on how much it has progressed. If it's already in your organs and limbs I don't think it would matter if you did amputate. Though it might help with pain levels it cant stop it from spreading.
The implants do stop working after a while, if it works to begin with. There are a few different types of stimulators. The placement is usually in the back, I already have back issues so not sure I could handle that. The batteries die and have to be replaced. If I were to lose my insurance (always possible) and had an implant, I would not be able to maintain it. Docs don't seem to understand that. I've done all the injections they wanted me to, taken the pills they wanted me to but when I said no to the implant it was like they couldn't do anything for me anymore. Then they said my insurance wouldn't cover the drug tests the law says I have to have but because they were pain mtg I wasn't allowed to self pay for labs. Then my insurance stopped covering my pain meds. I had been on it for years with no issues. I was told if I didn't have cancer, sickle cell or dying I wasn't covered for more than 30pills in 90days. It took a year for my neurologist to say he would give me pain meds, I just can't have what I would with pain mtg which isn't enough to actually function. My stress levels have got so high I've been in a constant flare for months. The pain is consuming me. Today I have been in bed all day and only was able to be on my feet for 10 min to wash dishes. I'm just so tired of pain.
Last edited:
_Seeking
I'm only here for this moment
- Dec 16, 2021
- 205
I'm so sorry you have to deal with this, doctors have been shit for me trying to deal with my CRPS. I have to do the drug tests for pain management too even though they will only prescribe me Gabapentin. Then the only thing that works somewhat, 5% Lidocaine, insurance won't cover and it's $350. It is so ridiculous, I ended up going to a functional doctor because I hate being treated like a criminal for fucking Gabapentin. The only things that help me are hyperbaric oxygen and low dose naltrexone. It is expensive, and I'm slowly losing my battle with it. I also have a connective tissue disorder and recently tore both my hip labrums, so the CRPS has now spread there, it was mostly in my knees before that. That is why I am here, for me I think death is the only answer. Being a chronic pain patient in America is the worst.
Onthe29th
Experienced
- Dec 28, 2021
- 255
For gabapentin of all things? That's not even a narcotic and it's not habit forming as far a I know so why?
absoluteanimal1
Death by chocolate
- Dec 17, 2021
- 941
I used to take Lyrica. It worked for years but then stopped and my memory was so bad I couldn't remember conversations from the day before. Now I just deal with the fire and take my pain killers when I can. The pain is too much anymore. I am in several support groups but talking about death seems to be not allowed. It's been sad seeing so many in our community die because they don't have the help they need to take the pain away.
I see my neurologist next week and I'm going to ask about the oxygen thing. Maybe it's something I can try but if insurance doesn't cover it I won't be able to. I wanted to try the ketamine infusions but found out for pain relief it's 6 visits in 2 weeks and can cost up to 6000 (not including room and food since it's not in my area). I try to watch what I eat since there is some immune system components to crps. The anti inflammatory diet helped a little bit but not enough to really make a difference. Lately Ive been thinking more about amputation and if it's even possible to do myself. Pretty sure if just bleed out and then I'd end up either dead (which wouldn't be so bad) or committed and I really don't want that to happen. Plus if I did survive they would probably take my meds away and that is the only thing right now keeping me from spinning out of control.
They label it as a controlled substance. I guess there are ppl that take it to get high. I don't see how that's possible but the government has to be in everything so they find a way.
Onthe29th
Experienced
- Dec 28, 2021
- 255
I'm so sorry that people with chronic pain have to go through this. I knew a lady with fibromyalgia and she's constantly in pain but you wouldn't be able to tell just from looking at her. I guess that's what happens when you're always in pain. She refuses to take pain medications in case she wants to have more kids. If only strong pain medications weren't habit forming, you could get what you want.
_Seeking
I'm only here for this moment
- Dec 16, 2021
- 205
It is policy for most pain management doctors, for them to even see you, you have to take a drug test. Doesn't matter what they treat you with.
Onthe29th
Experienced
- Dec 28, 2021
- 255
Insane. At the same time though, doctors have to go home at the end of the day and they're not trying to prescribe medications to any and everyone and risk losing their license. Life is hard
CiproKilledMe
Experienced
- Mar 23, 2021
- 243
How the hell are doctors pretending it's all in your head? I thought CRPS has been proven to be some sort of neurological feedback loop? I'm pretty sure I saw a video one time where they cured a girl of her CRPS by putting her into a coma in order to 'reset' her nervous system. I'm assuming you've looked into that?
Doctors do not have a consensus on treatments. It is a feedback loop but there are autoimmune issues with crps. The complexity makes it harder for doctors to treat and because it is considered rare, it's not talked about much in medical schools. It's like we are the mythical unicorns that they hear about for 5 min but never expect to see. There also isn't a specific test that confirms crps so even if all the tests rule out everything else, it's on the doctor to actually say you have it. I had to get a new pain doc when I moved states. The doc had never met me before and said I didn't have crps that I was fine and that he wasn't going to give me my meds. I walked out crying (I reported him and then got a new pain doc that agreed I do have crps, after a few tests). The first doc that said I have it, then another doesn't agree so I have to go thru more tests I've had before... It can take some ppl a really long time to get a diagnosis. Thankfully my first doc knew what it was and treated me with the first month of me showing symptoms. Not everyone is that lucky. Early intervention is best and I think that's why my physical symptoms (color change, swelling etc) are mild compared to others but the fire and other symptoms are very intense.
There are some treatments that can put the crps into remission. There isn't a cure. The girl you spoke about most likey had the ketamine infusions. Or a treatment that isnt available in the USA. There have been several ppl from my support group that have said Italy has a treatment that can lead to remission. None of the treatments that I know about that are FDA approved for crps lead to remission. And because either it's not offered here or isn't approved, it's stupid expensive. I feel like those who are chronic pain patients should have the right to try, like cancer patients. Or at least stop taking away meds that help keep the pain from getting to be too much.
Yes when you are in pain constantly it changes how your brain works. You disassociate frequently, basically separating yourself from the pain. When docs ask me everyday 0-10 pain levels, I ask if they mean for me or for a normal person. For a normal person I'd be a 20 for me it's like a 7. A flare that makes me above a 10 would be a 30 or 40 for a normal person... Right now I'm living with a pain above the scale. I have tried to get the pain to level out but my anxiety is so high from the pain I can't chill out. There is no way I could continue to live without some sort of pain relief. I have a high tolerance for pain meds. But I think it's also because my pain is so high. Dependency of my pain meds isn't any different to me than a person dependant on insulin. I think society has made everyone think if you are dependent on a pain killer your are an addict. Which is why many of us can't get meds anymore to function. It's not about getting high, it's about being able to not be in pain....
Not only does the pain effect how the brain functions, it effects your blood pressure, I have a severe issue with loud noises (I can feel sound, it hurts). Hypersensitivity to basically everything including foods. Some foods can cause me to flare up.
Sorry for the long reply.
Last edited:
There is a forum similar to this one called Biid For Freedom. It is not related to your specific illness but there are people there who discuss the methods for amputation similar to the discussion for methods of suicide here. I am not sure if that is helpful, and I don't have any specific advice, but I thought I'd mention it.
Sorry you're going through this. Wouldn't "illegal" drugs be worth a try before amputation?
Thank you. I'll look into it.
I do smoke when I know I won't have to drug test. My doc has to test me every 3 months and since I can self pay with him, I know when they are. If I was in pain mtg it would be random. My pain levels are always worse the month leading up to a drug test. (which is now) but it's worse now in a flare and not having the extra help from smoking. It doesn't take the pain away, it helps me sleep and does help with the muscle spasms. Medical marijuana is not legal in my state. But I've heard from some that if you have to choose between the two if I did live in a legal state (not sure on that). I need both for the pain and other symptoms from crps.
Last edited:
