Worse pain after 3-day ketamine infusion
 

Last week Tuesday through Thursday (4/19 - 4/21), I had the 3-day 4-hour ketamine infusion. I found it particularly challenging and experienced a lot of side effects. About half-way through the first day, I was awoken to my neighbor (also receiving the 3-day ketamine) having a severe hallucination. It freaked me out and I was unable to sleep through the ketamine after that, even after they gave me more medication to help me relax. I experienced headaches, nausea, and psychedelic symptoms. On the second day, the dosage was increased. I dozed some, but couldn't sleep. The side effects became substantially worse. After, I had a difficult time walking and was very weak. The third day, the doctor did not increase the dose and I found it easier to tolerate, though I still only slept for the first half of the infusion. Through the whole procedure, I had some increase in pain, but only with use of the affected limbs. The first day after the procedure, Friday, my pain had increased almost 3 points, was constant, and intense. While my pain went down about a half point on this Tuesday, 4/27, it's still worse than before the treatment. I called the doctor and the nurse told me that it's rare for ketamine to make the pain worse and that we need to give it more time. I do know that in research studies of ketamine infusion, a few patients have experienced worsening pain. I'm worried that's what happened with me.

1) Has ketamine infusion caused a flare for anyone that lasted longer than 24 to 48 hours (the amount of time they told me the pain could increase for)? How long did it last?
2) Has anyone experienced worsening pain after the ketamine infusion that didn't go away (i.e. it wasn't just a flare from the infusion)?
3) Does anyone know what the best next steps are? Is there a way to undo this? Will the pain get better as the ketamine wears off? Is there anything I can do?

Someone please tell me that I didn't go through 3 hellish days of treatment only to end up worse than I was before the treatment.

I don't have any personal experience with ketamine...but just wanted to pop in and say that I have heard it can take some time (weeks maybe) to see the positive relief from the infusions...so don't be discouraged on that end. As for the increased pain...it sounds like you went through a lot with the infusions so it's likely just a flare if the pain is the same as before just at a higher level. If it's a different type of pain...then I would say you should get it looked into...but if it's the CRPS and just feeling more intense then my advice is to take it easy, rest, and try not to stress as that will just lead to increased pain as well (I know...easier said than done). If you feel you need to see the dr again then call them back and don't take no for an answer...but it may take some time for everything to settle. I wish I had more to offer as far as advice...but as I don't have personal experience with ketamine that's all I got. Hopefully someone else will pop in soon with first hand experience...but don't get discouraged.

Thank you so much for this reply. Your words helped me calm down a bit. As the days go on, it's harder and harder to take this in stride and not think the worst. Your words warmed my heart and reminded me that even if it doesn't feel like a flare, it can be since the pain is the typical pain I feel with CRPS. The resting part is hard. I hate feeling like my life is now on hold, especially when there's so much to do. But if I do it with compassion, it will end sooner. Thank you for taking the time to offer support. It means a lot! :hug:

I have not had experience with ketamine infusion. I hope some who do will respond soon. It has been rather quiet in here lately. I hope you feel better. I am so sorry you are having so much pain. Are there things you enoy and are able to do to take your mind off of the pain? I know easier said than done. I know that it helps my pain if I calm down. Deep breathing helps. I have a relaxation tape I listen to that is calming. Any kind of distraction, gives my mind something else to focus on, even when I have no focus hahaha. Music helps me. I know reading a book helps me get lost in that book and the day goes faster.

I know how hard it is to sit and see things that need to be done, and are unable to do them. Is there someone who can help you? It helps me to focus on now and take it one day at a time.

I hope you find that in the long run this infusion has helped you. Maybe it will help you to think of this as something you are going>>>>>through>>>>>that this too shall pass.

peace
zinnia

I like the idea of thinking of it as something I am going through instead of something permanent or lasting or even that I'm dealing with. I will try that mindset. Thank you!!

This forum gets quiet from time to time. Though I can't complain as I disappear for periods as well!

I have found that playing a video game has helped me keep my mind off of it, which has helped. I also find reading can help, but it's a bit harder for me to get lost in the book when the pain is high like this. Today's the first day in a few days that I haven't let myself play the video game. I've insisted on being some what productive. But I think it's time to switch to fun.

Unfortunately, I live alone and away from family, though that's changing soon. I have friends, but it's harder to ask them to do things like sort through health bills than it is my family. But I may have to ask for help soon!

I did decide that I need something to look forward to, so I looked for a class I can take this summer. I couldn't sign up because the system has to process my account first, but I have it all lined up and am very excited!

Thank you for all your thoughtful comments. They have helped me realize there are options while I'm waiting.

It is important to have things to look forward to. I'm having a really rough time lately with new problems in my neck, shoulder, and arm after falling off a ladder at work back in October. I was supposed to go to Disney World in April with my daughter for her first Disney vacation but we obviously had to cancel. I was a little sad about that...but I'm planning a trip in September and am looking forward to that now. Hopefully I will be well enough to go...but it gives me something to look forward to instead of thinking about the stuff I am missing out on now.

Don't let yourself get too caught up in worrying about "being productive". I know it feels good to accomplish something and can make you feel a little guilty when you do your "fun" stuff like video games instead...but try not to think of it that way. When you're in pain like we are...that "fun" stuff is sometimes all we can do to make the pain bearable. These "distractions" are just another form of pain relief for us that help us get through the day. I spend most of my days now stitching...and I've gotten more stitching done in the last 5 months than I did in the last 3 years...but even though I enjoy it I would much rather be healthy and working, doing stuff with my daughter, and living a "normal" life where I can't find time for cross stitch. But right now I NEED the stitching because it helps me get through each day. Your video games are the same...don't feel bad about that. Especially now as you struggle with increased pain...use any method you have of distracting you from the pain to get through the day.

I hope you feel better soon and I hope that the ketamine helps you even if it takes a while to really kick in.

Take care and keep us posted on how you are doing.

Thank you for your supportive words. It's so hard for me to be kind to myself when things are bad, but it's the time I need to be the most kind to myself.

I can relate to needing things to look forward to. It's a bit more challenging right now because in 2 weeks I'm going to be moving across country to be closer to family. So everything is in transition and there's a lot of grown-up things that need to be done, like finding a pain management doctor. But I did decide I have to have something to look forward to, especially since I'm moving away from friends. I found a pottery class during the day I really want to do, but I'm afraid to sign-up for it. What if I can't do it? So trying to find something to look forward to had the opposite effect :(

Luckily, there are a few small things to look forward to, like a paint night with my sister.

Thank you so much!

Update
 

I saw my pain management doctor today (not the one who administered the ketamine) and he put my on a steroid taper to try to break the flare. If that doesn't work, I'll be going back on gabapentin, which I had spent the last several months trying to get of so I could be less tired and think straight. I'm hoping it doesn't come to that, but more and more, the pain is setting in and creeping up. My pain doc reminded me that we need to be aggressive with calming the flare down.

On the plus side, the global pain has mostly gone back down to baseline. It's my right leg and to a lesser extent my right arm that hasn't improved and has worsened a bit. I am grateful we've been able to keep the global part of my CRPS under control since it started a year ago.

Update
 

Update: It's been about two months since I've had the ketamine infusion. I went back on gabapentin as the steroid taper did not work. Gabapentin has helped, though I'm still a bit above the baseline I was before. I flare much much more easily and still have limited mobility. My recovery from the post ketamine flare has been complicated by the fact that I moved home about a month after the IV infusion. The move itself caused horrendous flares and I'm still waiting to see my new pain management doctor. I feel more uncertain about the future and don't know what to do next. But I'm trying hard to stay positive, though I'm struggling much more with depression. Thank you all for your support. :hug:

Thank you for the update...I am so sorry to hear that you continue to suffer with this elevated pain. I had hoped that with time it would go back to baseline. I'm glad to hear that it IS better though now that you are back on the gabapentin. Have you been able too rest up now that the move is complete? I can't imagine the stress of a move while in the midst of a flare up like that. Take care of yourself and keep us updated on how it goes with the new dr.

Hopeful For You!
 

Hi maygin,

You have tried very hard to maintain a positive outlook. :hug:

I am glad the "global pain" is improved for you. Every bit of relief helps!:)
I am sorry you have not seen more gains from infusions, at least not yet.
I am sorry you have not seen the gains you had expected, overall. :(
This is a very challenging condition.

In addition to trying to cope with the severe effects of CRPS, which are very complicated and very trying, we are often given some misleading information, even from doctors who should know what they are talking about.

You have mentioned limited mobility. Please continue working on your mobility, no matter what you are told. I was told, all last year, the lack of mobility in my ankles, feet and toes was "permanent" and could not be reversed. At that time, I could not move my ankles or any of my toes. I had several neurologists do exams on these areas and all were sure I had lost the ability to move my ankles and my toes forever. An ortho doctor agreed with the neurologists. Very upsetting, as I had close to zero ROM in my ankles and could not voluntarily move my ankles or any toes.

I have refused to agree re: Permanency. I'd just kept an open mind and did not give up. While the doctors may have been correct in their assessment, I thought it best that I keep trying anyway, at least until I decided to give up, too.

I have kept working on them anyway, trying different approaches. I have recently found I have a lot more ROM in my ankles and toes and I can now move them. This has come about through massage frequent massage (4-6 times a day).

Depression is certainly understandable and is one of the major obstacles with chronic pain. Many factors play into depression. Some of the depression is "grief" which we might find helpful to process. Some of it can be side-effects from meds. Some of it is a response to the chronic pain, etc.
Depression is multi-faceted. It can build to an overwhelming level, as it tends to "snowball." Understandably so.

It can be helpful to have a well-informed counselor, therapist -- trained in the effects of chronic pain -- help us to identify the contributing sources/components of depression, so we can make some changes where we can and we can work on acceptance where we must do so, etc.
"Supportive therapy" can also be helpful when we are feeling "lost" as to what to do next, if anything, and when we are feeling generally overwhelmed by all of the complications.

Wow. The move. Surely takes a toll. :hug:

Thanks for the update.
Keep reaching out re: depression. It can become very complicated and can feel so very overwhelming. We can use some help, sometimes, getting back on top of it enough to feel like we can cope effectively.

I hope you find more relief with each passing day.:hug:

With Love and Concern,
DejaVu

Hang in there
 

I wanted to jump in and just give you some motivation. Moving is so hard. In fact it ranks up there as one of the most stressful things a human can do, so be patient with your body. I am hoping that the pain is decreasing little by little.

I also have rebound pain with the ketamine, meaning my pain increases after an infusion and then goes back down. There is a helpful fb group called SCS, Ketamine, Nerve blocks. That community of people are helpful.

I too had more depression when I did ketamine and I got on an antidepressant. I have been anti-anti-depressant for years but honestly it has helped so much! And I have noticed my mood is better and I can do more activities. (and now y mood doesn't stress me out).

I too am in a bad flare from a toenail removal and am having Sympathetic nerve blocks- a series of 5 to calm the pain. I've had one and it has worked okay so far... maybe that is a option?

I hope you feel better and the pain starts to subside! hang in there, it gets better

Thank you for your kind words. I was super lucky in that most of my things had already been moved back home 3 months prior, so it was a smaller move and a bit less stressful, though it's always stressful to move across the country. I have been able to rest some, but the apartment (which is in my mom's house) needs work and I end up having to help some with that, plus unpacking. Also, emotions are running high as I process having to move back in with my mom due to disability. I have good nights and bad. It's hard to shut my brain off. I need to get a car and a different bed, but money is tight and I have no idea what my future holds. So it can be a bit much. Which I assume is making all of this worse. I really wish the ketamine had helped. It would have made going through all this so much easier. But I'm making it through. :hug: