If only
Posted , 5 users are following.
Can't sleep, can't sit. Suffering in miserable excruciating pain. I am burning up alive. Migraine type headache as well. Can't have covers on me above my waist. Shivering as well. I'm at the end of my rope. Lidocaine patches taped onto my face. Covered in them. No relief. This is why I don't want to share my experience. There are no comforting words. Legs are cramping nonstop. Hurts to stand, hurts to even lay on the only side I can. So sick of this.
0 likes, 45 replies
sabrina51474 ROCKY_BALBOA
Posted
Dear Survivor,
One of the hardest, scariest things about CRPS is the underlying fear that no matter how bad things are in terms of pain level, they could get worse. The first year that I had this thing, when in the course of less than 3 months it had spread from my lower left leg to everywhere, including swimsuit area, so couldn't sit up for long, or do any of the other things you generally do with those body parts without pain that made me want to scream except that...I also had developed a sensitivity to light and especially noise, so screaming would have just made everything worse.
Turns out, per a study at Drexel University by Dr. Robert Schwartzman et al, that after the first 2-3 years, the pain pretty much doesn't get significantly worse for most patients; ie: The average CRPS patient rates his/her pain at about a 6-something by year 2, and only a 7-something on 10-scale 10 years later or so. Color and skin temp changes tend to slack off as well.
That study is a goldmine of info., even though it was written in 2012: The title of the article is "Systemic Complications of Complex Regional Pain Syndrome". It covers a lot of territory, and is a great reference for medical staff and patients/their families.
If there ever was a CRPS sufferer who needs a medical expert, my friend, it's you. Any way you can get to Drexel or Brown University? Those are the two biggies that I know of out on the East Coast.
You need a comprehensive plan, not somebody who's overwhelmed and therefore, attacking your signs and symptoms piecemeal. Somebody needs to devise an individualized plan of care for you that gets out in front of your current status, instead of chasing the pain and debility, as well as profound (And totally understandable!) emotional fall-out from what you are going through.
Wishing for you that there will be light in the darkness soon. So sorry you are in such a bad place right now, and had to miss your baby's college graduation. I missed my daughter's graduation from University of Illinois last summer as well; just couldn't do all those stairs in the auditorium, or tolerate the noise and crush of people (you never know when someone might bump into you, or with the best of intentions, put a hand on your shoulder or forearm, etc.. And those hard plastic seats might as well be medieval torture devices, right?
I did the best I could to let my girl know how proud I am of her. A family member live-streamed the part of the ceremony where my daughter got handed her diploma. I cried tears of joy more than pain that day.
You will find a way forward. You already know more than most of the medicos do, about your condition. Keep asking those questions, and you will find answers; since I came down with this thing in 2015, I'm amazed at the speed and the volume of new literature in the peer-reviewed medical journals. If you have to have CRPS, this is the best time in history to have it; we WILL see cures, maybe several different ones since we are a heterogeneous population, after all, but there will be cures in our lifetimes. And probably, in the next 5-10 years at most. Some amazing, innovative science brains are closing in on this thing, and fast.
ROCKY_BALBOA sabrina51474
Posted
Sabrina,
You are awesome. You've heard me that counts. I want to be there for my daughter's graduation. She is only 20 years old and graduating with a bachelor's degree in communications. She wants to make a difference in the enviroment. She's focused. Her name is Lauren and she is a beautiful young lady. Most say that she got her looks from me and it's true being her father. I was once very handsome but this with the lidocaine patches and the inability to move my head has got me down. But I must say that you are lifting me up. I'm not sure what my future holds but I will continue fighting this. No sense in telling you what all has been done again but it's major. Encouraging words like this makes me want to post my story. YES, IT'S WORTH WRITING A BOOK. You've put a smile on my face knowing someone out there cares because of your similarities. I got tired of suffering this morning aND decided to crack a few cold ones. That's really not me but suffering makes a person do things out of desperation. I've caught up on my bills this morning making calls to settle my finances. I guess 6 beers made me feel 10 tall and bullet proof. For the sake of truth I cannot do the same everyday nor for my beautiful daughter as she is worried about me. I live in SC and she's going to school and about to graduate in Wise Co, VA. It's a 6hr trip and sitting is something I can't do for the ride. Sitting during graduation and a ceremony the night before will be so uncomfortable especially suffering and having to stand the whole time covered in lidocaine patches. Sabrina, I'm so torn and very concerned about this and HER FEELINGS about me not being there. After all, I've been a big part in making this happen for her besides "her own" hard work and dedication. Lauren is at the "top of her class with many honors. Damn, sounds like I'm convincing myself to be there. I love her with every once of my heart. I'm reading what I'm sending you in recognition that half of this is not focused on my chronic suffering from all of this. My saying used to be is,, "You only have one life, that's it!" The flare-ups have been disastrous, it affects my thinking. You don't know me but I was once the envy of my siblings. Well, I'm still told this because of my endurance especially from my one and only younger brother. He has referred to me as Rocky Balboa. This though is a fight I wasn't prepared for. No training. Everyday I say to myself, "one more round, I haven't heard any bells yet. I am being pounded to a pulp. With all truth, I don't want to give up. I'm a fighter and I certainly don't want to let anyone down. So, what should I do? I believe the answer lies within me. Right now I'm jamming. Haven't done that in 1 1/2. I deserve it. We all deserve it. I don't believe anyone knows just how much suffering is involved. I will take your advice and listen. I believe that you genuinely care because you are understanding being that you are suffering yourself. Maybe I'll tell my story on this site. It's a matter of when I'll be able to think clearly and endure the suffering from typing. It's pretty tragic. Having a previous diagnosis of ALS sure to a lot out of me then I got somewhat well just to have a fall that has changed my life. I miss the old me everyday. That's part of what's driving me to anger and depression. Anyway, I've said enough. You are an inspiration. Man have Ive heard that so many times. Waiting for a cure or relief from this is exhausting every single day. Now I have Aleve and taking motrin. I have other meds, not much, to help me cope. No antidepressants though, I cannot tolerate the side effects. I'll keep you posted and keep dropping a line to me. I may be telling you about me being there for Lauren's graduation.
A very sincrease thanks,
Jimmy
allaroundanne sabrina51474
Posted
Hmmm...your link goes to an article on here that's written in 2016 and is pretty depressing because of it's lack of information on new treatments. I'll have to go search out the article you were referring to by Dr. Schwartzman. Heck, maybe in the 6 years he's provided an update! I live in central FL and it seems like my pain clinic is filling up lately and the snowbirds aren't flying back home for the summer. I called today for an appointment with my doc and can't get in until June, arghhhh. I can see the nurse practitioner, who is great, right away, and he's been known to schedule me for blocks without the doc even seeing me since I am a doc myself and know the territory. But you all have me quite perturbed and wanting to treat this thing right away before it gets out of hand. The pain is just escalating every day, I truly had no idea how much my patients were suffering although I always treated them with the utmost empathy. You really have no idea until you have this yourself. LOL sort of like going through labor and delivery. It's also just so frightening now to know that I have very little control over where it stops and how to keep it contained. I am reading this board obsessively trying to glean every tip and piece of information I can, which is what I am sure every newbie who discovers this place does. It is a frightening place to find, more so when you have medical knowledge as I do.
Lynn