CRPS Spread to Full Body
 

Starting in January, just over 5 months after the CRPS started in my right foot, it spread up the leg, into the hip and sacrum, then into the left leg and hip, then into my hands and arms, and finally every where else - face, scalp, abdomen, back, etc. The spread into my left leg and then the rest of my body took less then a month. The doctor has canceled my lumbar sympathetic block and the only option I've been given is naloxone and/ or ketamine. One doctor wants me to switch from gabapentin to lyrica, but another thinks it's unnecessary. Until I can see my orthopedist next week and my pain management doctor the following week, they've increased the nortriptyline (I'm already maxed out on gabapentin at 900 mg 3 times a day). Ketamine won't be an option for quite some time as the wait list to get it is very long. I am at a loss for what to do. Everything I do hurts. I feel so alone, exhausted, angry, sad, and terrified. I worry that this isn't the worst it will get. I guess I don't really have a question, but I wanted to put this out there in a community that can understand what this feels like. It's been challenging to talk about this with friends, family, and coworkers. Thank you for listening.

Maygin,

I am so so sorry to hear about your spread. You must be so scared and frustrated. I am wondering if there is any place else that can do ketamine for you any sooner. I know some places have waiting lists but where I am numerous clinics that do them. Seems like there ought to something kind of close to you. There is a list of ketamine doctors (surely not comprehensive) at http://crpspartnersinpain.com/?page_id=1436
Might they consider a lidocaine infusion sooner? There seem to be quite a few proponents for those on the forum. Also we had a recent post from GoodnPlenty about a good response to Nudexta. It is dextromethorphan with a quinine drug mixed in to enhance the dextromethorphan. It's expensive but GoodnPlenty seems to be doing well. Dextromethorphan is an NMDA antagonist like ketamine just not as efficient on its own. I hope you can get something new started soon!

Sending Healing Love and hopes for relief, Littlepaw :hug:

Have you tried to find a support group in your area? People living in your area may be the most knowledgeable about what is available there. Best wishes.


Sent from my iPhone using Tapatalk

Understand you are scared....when mine spread I was very worried....so you came to the right place to vent away....:grouphug:

Littlepaw, thank you so much for your support and this list. I did look and the only other one listed is at the Children's Hospital. My orthopedist reached out to the ketamine doctor and is hopeful he can help speed the process along. He has a long history of working with that clinic, so for the moment, I am trying to be hopeful that sometime will come soon.

Part of the problem is that I am really low on paid days off from work. This may be changing in mid-June (fingers crossed), but nothing's certain. So depending on how much or even if ketamine is covered by my insurance, it might be really hard to take unpaid time off, but I'm sure I'll be able to figure it out. After all, I'm incredibly lucky to have had a job and great health insurance when this all happened in the first place.

I hadn't heard of those other treatment options. I will bring them up next week when I see the doctor. Dr. Moskovitz is pretty knowledgeable about treatments and has no problem with compounded scripts. My insurance has covered the compounded neuropathic pain cream, so maybe it would cover some of this?

Thank you so very much! :hug:

Thank you so much for the idea. I have seen a few chronic pain groups, but none that are specific to CRPS and close enough for me to participate. I don't have a car and the only group is more than an hour drive from me. I've thought about going to the pain support groups, but I haven't. I have social anxiety and it's been really bad with the CRPS. Not that I should be worried when I meet a group of people who live in pain! Thank you for the reminder. I need to try to go. There's a monthly support group meeting here soon I will make a real effort to attend. They may not have CRPS, but they may have great ideas still!

Enna70

Thank you so much for sharing your experience with me. It helps to know I'm not alone :hug:

Find a PM doctor who will prescribe ketamine troches and nasal spray and ketamine topical. Cheaper than infusions and I found it actually works better.

How to cope
 

Every day I find something new that hurts and likely something I'll have to give up. Cooking hurts, hobbies hurt, walking my dog hurts, walking hurts, hugs hur . Everything I've ever enjoyed is being taken away from me. I don't know how to cope. It's so overwhelming. And I never get a moments piece from the pain. I see my life slipping away. I'm supposed to start returning to work full time, unless I want to lose my job. I'm running on empty. I can't keep pushing through and putting on a brave face, pretending everythjng is fine. I'm losing optimism and a future to look forward to. I nearly at the end of my rope. How do I keep holding on? What do I look forward to knowing that all there is is a world of pain and isolation?

Hurts is now part of your vocabulary....rest is VERY important; You have to look at things in a new way...it isn't your fault or your body's....it is what it is...accept your limitations and finding new things to cope with the monster inside can be an adventure if you can. Trust me, we understand...it hurts to talk, walk, sit, sleep...etc; so to keep up the fight, know you are not crazy, your pains are real....your limitations are for yours to explore....and on the days you need to cry...CRY...on the days you need to be upset...be upset; you get the picture....and remember we all are here...we understand and support YOU...:grouphug: