Living with CRPS (Complex Regional Pain Syndrome)

[fireflights]

To give you some history on me, I wasn't always disabled, I didn't always have uncontrollable pain, I didn't always wake up in the middle of the night just to take more medicine to sleep. I didn't always have a hard time climbing my stairs and I didn't always have a hard time just walking a few feet. All of that changed for me on May 18, 2016. What happened to me you may ask that would change my life so drastically? I finished a set of shots in my back for 3 bulging discs and that very night, I felt so bad I was in bed by six pm. I woke up just two hours later with my hands completely asleep in the same position I have slept in all my life and never once had they ever fallen asleep. Since then, my legs have become so sensitive nothing can touch them but hot water. If cold water touches them, it sends my nerves ablaze, if the wind touches them, I hurt so much I want to cry and if the sun touches them, it burns like insanely more than normal. If my cat rubs up against them, I start to move them away and if they try getting on my lap...well let me just tell you, they can't. I have burning from my lower back all the way down to my knees. I can't live a normal life, in fact, the only places I go are to my doctor appointments and to bingo once a month with my boyfriend which usually leaves me in tears by the end of it. I have recently found a med that lowers the burning, and sensitivity to about half the range it is normally at, which gives me a slight in relief, but it doesn't take it away, I would give anything just to walk again without wanting to cry after a few steps. When my new med can't curb the burning enough, my clothes feel like sandpaper on my skin if it rubs on it, which only enhances the pain. I'm not telling you to gain sympathy, I am hoping that others with similar issues might come and help tell their stories just in case other sufferers who are just newly going through this have it. CRPS consumes your life, my sister has it, osteoporosis and now possibly RA all over her body. It attacks more women than men, but that doesn't mean Men don't get it, I do know one sufferer on here and maybe he will share his story too, I don't know, that's up to him. Many days I have to go to bed early because I just hurt too much I can't even manage to stay up. It's not an easy thing to live with, it has no cure, they can only do things to try to minimalize the pain as far as I've learned so far but I'm willing to try most things that don't involve needles since it was needles that put me into this state. So if anyone has a story of their own to share, by all means, please share it. If you want more information on CRPS there is the RSD/CRPS foundation.

https://rsds.org/living-with-crps/

[Al Terego]

I don't have a story to share, only hugs.

*HUG*

[Alive Until Dead]

I admit, I was just bouncing around E, reading stuff. I came across your blog post and.. wow. The inner strength you have. I've always prided myself on having a high pain tolerance for most kinds of pain but what you describe sounds excruciatingly crippling. I can't even entirely imagine it. I just wanted to commend you on living through it and being brave enough to talk about it! Just, wow. You're amazing. Those of you living with this, are amazing. Please feel free to share that with the others you know.

~ Remmy

[fireflights]

Thank you Al, and Remmy, it really isn't an easy disorder to live with and yes, it is excruciating. I was dumb last night and just changed around my pots and pans something anyone should normally be able to do without problem but now i'm in so much pain I want to cry and it's been like this since I finished yesterday. I didn't eat dinner because the pain had taken my appetite. And the thing is, no one can truly understand what someone like me goes through unless we share it like this. So that's why I made this, for other sufferer's like me to give their side of what it's like for them because CRPS affects everyone who has it a little differently, it could only hit a finger, toe, or an entire foot, leg, or an arm, shoulder, hip, it doesn't always attack everyone who has it at the same spots. It all depends on where they get the injury that triggers it, but it can move through the body, so now when I go have my surgery in a few months for bariatric, I will be worrying about it moving to that site and causing me more pain there as well. CRPS is a horrible condition and it's not an easy one to handle. But I try to handle it the best I can. So thanks to all who are reading this and at least getting the knowledge so if someone you know becomes afflicted by it, you can at least say "I know what it is." and realize that it's very difficult for that person to deal with.

[Al Terego]

My best wishes are with you, and good luck for the surgery

[Aiden]

Out of curiosity is medicinal marijuana something you have tried or is legal in your state? We are friends with a couple who specifically make edibles for people with terminal cancer and they speak highly of the results (pun not intended).

[fireflights]

It is allowed however without being covered by insurance and I have no money yet, plus when I so get my disability I wont still be able to afford monthly doses of it, I can't try it to see how it might help.

[Ket]

It is allowed however without being covered by insurance and I have no money yet, plus when I so get my disability I wont still be able to afford monthly doses of it, I can't try it to see how it might help.

It's the same here. In order to get it, I must have a prescription. But I can only get a prescription from doctors that are on the state's list, and there aren't many. My insurance wouldn't cover the appointment to get the script, nor would it cover the product, which here in PA can only be tinctures or oils, no smokables. So basically, I'd have to travel to one of the big cities in order to get to an approved doctor, pay for that appointment, then travel to wherever the dispensary is (one in my city wasn't approved, even though we're the fourth largest in the state), and pay for the product all on my own. I know for sure it could help me (I could explain to you in PM if you'd like), but because I have federally backed insurance, there's no way it will ever be covered.

I don't have CRPS, but I do have severe fibromyalgia, along with several autoimmune disorders, including an arthritis, so I know somewhat of how you feel with the pain. *gentle hugs, if wanted*

[fireflights]

Ah....the sister condition, Fibromyalgia is a lot like CRPS so believe me, I know how bad you have it too Ket, my friend on here has it too and she's able to do the medical marijuana, it helps her so I know it would help you and likely myself as well, but as you are, I am on federally backed insurance, so it will never be covered most likely which means I can't afford to spend the money it would require for the doses as well, and yeah, it's only patch form or oils for me as well because I also have an allergy to smoke so I can't inhale smoke of any kind.

[Kaia]

<3

[fireflights]

<3 back at ya hun

[CaptSnowflake]

Wow, I feel so horrible for you. I don't have CRPS, but I know just how bad it is. I learned about it when I was in my first year of medical school and the description of it just blew me away. I can remember beings a medical student, working an ER near Detroit when a man came in complaining of your exact symptoms. The doc on that night was about to send him away; his vitals were fine and they see a lot of drug seeker. Recognizing the symptoms though, I pointed out the lack of hair and skin changes to the affected area and convinced the doc to give him something to tide him over until an actual doctor's visit. A few of my patients have had this and I've seen how it effected them.

I'm glad you have found a medication that at least helps. Please don't tell me what you are taking in this forum, but gabapentin was a help to some when I was in practice. I agree with others in this forum in regards to medical marijuana; I've heard great things about CDB oil. I've also heard great things about mirror box therapy and ketamine. Probably not something accessible to you right now, but may move into first line treatment with more acceptance. I wish you strength and, when you can find it, a little solace. Thank you for sharing your story. 

[Mithlomwen]

My mother in law also has CRPS.  It is a horrible thing to have to live with.  I am so sorry you are suffering too.  *offers gentle hugs* 

I myself have Fibromyalgia. 

[fireflights]

Thanks to both Capt and Mith.

The hardest thing is to have to explain it to others when they don't really see me in what they think to be pain. I don't like to cry in front of people so I hide it as much as I possibly can and cry at home. But i know people think I'm not in as bad shape as I am, I've had this conversation so many times to educate people because people NEED to be educated in case they come around someone like me. I have never asked for anyone's sympathy when I tell them what's going on, it's always to just let them know how I hurt and where. Nothing more, which is why I believe people tell me I'm so brave, but if they saw me behind closed doors, they probably wouldn't think I am, because hell I don't think I am.

Quite angry with my Neurologist though, he told me to transfer to his pain clinic so they could talk back and forth and figure out the best treatment for me. However this is not the case and because I signed out of my old pain clinic, thinking I was supposed to get care there, and it turned out all they wanted to do was strip me of my meds and put rods in my back. Because of how this started for me, I'm shell shocked when it comes to letting doctors do anything to my back and so I refused at my regular pain clinic to have these same little rods in my back, so I don't understand what makes them think if I wouldn't let the same pain clinic I have had for almost 2 years do this procedure on me, that I would allow them, people I don't know and don't trust, to do the procedure? I mean seriously ugh! Anyway rant over, thanks again for your kind words for me though.

[fireflights]

Wow, I feel so horrible for you. I don't have CRPS, but I know just how bad it is. I learned about it when I was in my first year of medical school and the description of it just blew me away. I can remember beings a medical student, working an ER near Detroit when a man came in complaining of your exact symptoms. The doc on that night was about to send him away; his vitals were fine and they see a lot of drug seeker. Recognizing the symptoms though, I pointed out the lack of hair and skin changes to the affected area and convinced the doc to give him something to tide him over until an actual doctor's visit. A few of my patients have had this and I've seen how it effected them.

I'm glad you have found a medication that at least helps. Please don't tell me what you are taking in this forum, but gabapentin was a help to some when I was in practice. I agree with others in this forum in regards to medical marijuana; I've heard great things about CDB oil. I've also heard great things about mirror box therapy and ketamine. Probably not something accessible to you right now, but may move into first line treatment with more acceptance. I wish you strength and, when you can find it, a little solace. Thank you for sharing your story. 

Oh jeez I never meant to ignore you, but I am using both that you mentioned among others. I also have a half sister with it as well. So it's a possibility my genetics play a factor.

[Al Terego]

Oh jeez I never meant to ignore you

Unfortunately, @CaptSnowflake hasn't visited for over 8 years.

[fireflights]

Unfortunately, @CaptSnowflake hasn't visited for over 8 years.

Meh it happens.

Oh and hi Al

[Al Terego]

Oh and hi Al

Hello friend!
*Offers hugs*

[fireflights]

*Hugs back*

Time for sleep for me tho. I will message in morning okay?

[Al Terego]

Time for sleep for me tho. I will message in morning okay?

Sweet dreams!

[fireflights]

Hello everyone it's been awhile since I've written on here and I hope to be able to write more than I'm laying in bed with excruciating pain like I can today. On March 18th I finally had the other knee replacement surgery for my right knee so now both of my knees have been replaced the right knee is of course was a stubborn as it could be it I had to wear a brace for weeks actually. It's because my condition and my knee was so unstable it needed a immobilizer. So come to yesterday I had a manipulation done like I said and they gave me a new medicine that I know will revolutionize pain medicine throughout the world and we need to get more people knowing about it because it's just barely been approved by the FDA and I was giving it today which is called journavx and it is amazing. 

I have had nothing but pain all day everyday even with all my pain meds which are pretty high as it is and I can't get any more of those specific meds because opioids we know they only allow you so much but Journavx is not opioid and it works better than any opioid I've ever had. I go and see my pain doctor in 2 days and I am telling him about this because think of someone who has trauma in their back like I do someone who can't stand needles now going into your back because a doctor did something and caused them to feel trauma and panic every time when it shouldn't have had to be like that. 

This medicine can save so many people from the thoughts of su*c*de when it comes to handling pain conditions people can regain their lives I feel like if I could be on this every day I could easily go back to work. I haven't had a job since 2011 and in 2016 the paint condition kicked in I just need stuff that could manage the other parts of my pain condition which my other medicines do but not feel the pain that having this condition inflicts it is so amazing to know about this medicine now. 

Please everyone who has pain conditions start talking to your doctor about this you can even show them my post I will not mind this medicine needs to be put out there far more than it is and it's absolutely an amazing medicine I will definitely be going on it for permanent and then I can think about getting off of disability and getting myself into a job. 

[LostInTheMist]

Hello everyone it's been awhile since I've written on here and I hope to be able to write more than I'm laying in bed with excruciating pain like I can today. On March 18th I finally had the other knee replacement surgery for my right knee so now both of my knees have been replaced the right knee is of course was a stubborn as it could be it I had to wear a brace for weeks actually. It's because my condition and my knee was so unstable it needed a immobilizer. So come to yesterday I had a manipulation done like I said and they gave me a new medicine that I know will revolutionize pain medicine throughout the world and we need to get more people knowing about it because it's just barely been approved by the FDA and I was giving it today which is called journavx and it is amazing.

I have had nothing but pain all day everyday even with all my pain meds which are pretty high as it is and I can't get any more of those specific meds because opioids we know they only allow you so much but Journavx is not opioid and it works better than any opioid I've ever had. I go and see my pain doctor in 2 days and I am telling him about this because think of someone who has trauma in their back like I do someone who can't stand needles now going into your back because a doctor did something and caused them to feel trauma and panic every time when it shouldn't have had to be like that.

This medicine can save so many people from the thoughts of su*c*de when it comes to handling pain conditions people can regain their lives I feel like if I could be on this every day I could easily go back to work. I haven't had a job since 2011 and in 2016 the paint condition kicked in I just need stuff that could manage the other parts of my pain condition which my other medicines do but not feel the pain that having this condition inflicts it is so amazing to know about this medicine now.

Please everyone who has pain conditions start talking to your doctor about this you can even show them my post I will not mind this medicine needs to be put out there far more than it is and it's absolutely an amazing medicine I will definitely be going on it for permanent and then I can think about getting off of disability and getting myself into a job.

This is amazing, and I'm so happy for you. I hope it keeps up. I have a friend with CRPS, and I'm going to recommend she check out this one.

[fireflights]

This is amazing, and I'm so happy for you. I hope it keeps up. I have a friend with CRPS, and I'm going to recommend she check out this one.

I'm glad for your friend if it helps then I will be happy for your friend. It's only being used for surgery recovery for people who have severe pain. It really is wonderful. I am able to do things that I haven't done in years  it does nothing for the other issues that come with CRPS. But I can manage it right now. I have enough to get me through two weeks. Nothing has made me happier in years than this med. 

[Al Terego]

That's great! So happy for you!

[fireflights]

Ty my friend, I am seriously excited.