u/Dasholiday

Hello everyone,

I hope you’re having a great day ☀️🤍

I’m sorry for the long post…

I recently underwent a 7-day ketamine infusion for CRPS in Switzerland and received a total dose of approximately 3 g.

I am a 28 year old woman, 169 cm (5’6”) tall and weigh 63 kg (139 lbs).

I have Type 1 CRPS affecting both upper limbs, from my fingers up to my shoulders/scapulae, following a ski accident. It initially started as what was thought to be a skier’s thumb tendinitis in both thumbs. Unfortunately, it never healed properly. Over time, the pain spread from my thumb to my hand, then my forearm, and eventually both entire arms.

Because my forearms would become extremely tight, rigid, and painful with activity, my doctors initially suspected chronic exertional compartment syndrome. I underwent MRI scans both at rest and after intentionally triggering a flare-up, and the findings appeared consistent with that diagnosis. Based on these results, I underwent a complete fasciotomy of my left forearm and thumb. Unfortunately, the surgery did not improve my symptoms, and after extensive testing and exclusion of other conditions, I was eventually diagnosed with CRPS.

My ketamine treatment was based on the protocol from the Sigtermans study, although my infusion lasted 7 days rather than 4.2 days. During the last two days, the dose was increased to approximately 0.5 mg/kg/h. The total cumulative dose was about ~ 3g.

The results were remarkable:

• Before ketamine:

* Resting pain: 3–4/10
* Physical activity: 5–8/10

• During the first 2 months after treatment:

* Resting pain: 1–2/10
* Physical activity: 4–5/10 maximum

For almost two months, I had very little pain at rest, tolerated activity much better, and generally felt like I had regained part of my life.

However, now that I am entering the third month, I can feel the pain, stiffness, and sensitivity gradually returning. One month after the infusion, I also received three booster infusions of 100 mg (one per week), but I did not notice a significant benefit from them.

Since I live in Switzerland, ketamine protocols are often quite different from those used in the United States. I would therefore be especially interested to hear both from people treated in Europe and from those treated in the US, so I can better compare protocols and outcomes.

For those who have undergone long-term ketamine treatment for CRPS:

• How often do you receive infusions ?
• What maintenance protocol or cumulative dose works best for you ?
• How long do the benefits typically last ?
• Have you found that repeating longer infusions helps maintain the effect over time ?

For reference, my current treatments include pregabalin 300 mg, amitriptyline 50 mg, memantine 40 mg, diazepam 25 mg, daridorexant 50mg, and medical cannabis (THC/CBD). I recently stopped fentanyl patches. I also tried multiple short ketamine infusion (12), it helped but it was not phenomenal.

Despite these treatments, long term ketamine treatment has been by far the most effective intervention I have tried so far.

Thank you for sharing your experiences and advice 🤍