A broken leg, an operation and then inexplicable, permanent pain and an immobile leg – Anna R. (name changed by the editors), suffers from CRPS, a pain syndrome that can occur after trauma. Although she tries different therapies and takes strong opiates, she can’t get rid of the pain. When a migraine is added to the mix, another solution is needed. The treatment is not a resounding success until Anna tries a cannabis medication.
Kalapa: You suffer from CRPS – complex regional pain syndrome – and migraine. How old were you when your conditions were diagnosed? What were the first complaints and symptoms?
Anna: CRPS was diagnosed when I was 28 years old, migraine then about 5 years later. CRPS develops after a trauma. I had broken my lower leg and had to have surgery. Immediately after the surgery, the pain started and my movement was significantly limited. I was treated by a physiotherapist who thought that my pain was not normal after such an operation. When my leg started to swell, I went back to the hospital for an examination. Unfortunately, we did not make any progress there. With CRPS, a surgical error can also be the trigger, so perhaps the hospital simply had concerns and was cautious about making a diagnosis. I then went to another clinic and they made the diagnosis of CRPS.
Kalapa: You have tried many different medications for your two diseases, some with severe side effects. Nevertheless, the standard therapy did not work sufficiently for you…
Anna: I have tried many medications, different ones for both conditions. For CRPS classic painkillers and anti-inflammatory medication. I did pain management, when that was not enough I got tramadol in combination with antidepressants and pain patches. I received ergotherapy and outpatient physical therapy. Still, very little worked for me. The mobility in my leg was severely limited and due to the pain I practically couldn’t work on my leg at all to improve mobility. I had a really bad period of about a year and a half where I was very immobile. I then changed the painkiller from tramadol to oxycodone.
Kalapa: A strongly effective opiod…
Anna: This reduced the pain, but I had severe side effects, especially with digestion. At that point, I thought I had reached the maximum pain relief. I was also told by the doctors that more was not possible. Oxycodone is already a very strong drug.
When the migraines came along, my condition worsened even more. I can’t explain it well, but pain in the head is even more limiting than pain in the leg, simply because it affects the head. So I had to go looking for medication again – trying everything again: Antiepileptics, antidepressants, beta blockers, botox… I tried everything possible! In 2018, I received therapy injections with antibodies for the migraines.
Kalapa: The migraine injection is a measure to prevent migraines. It is used to administer antibodies that block the body’s own messenger substances that play a role in the development of headaches. The prophylactic migraine injection is still relatively new and relatively expensive. For this reason, health insurance only covers the costs if all standard medications have been unsuccessful.
Anna: Unfortunately, the migraine injections did not work for me either. At that point, I no longer had any prophylactic medication. I was desperate and thought to myself: No one can stand this, there must be something else.
In the pain clinic I was given the hundredth antidepressant, had much too low blood pressure, felt drowsy and numb. But the pain did not get any better. At the very end, the doctor at the clinic suggested cannabis as a last resort, which was in 2021. The doctor told me that there was nothing else available in my case. However, the treatment was not started at the clinic.
Kalapa: How did you go on about it?
Anna: After this statement from the clinic doctor, I was eager to try cannabis. After all, I had been taking standard medication for years. When I got home, I asked my pain therapist about cannabis.
Kalapa: How did he react?
Anna: He was hesitant at first and wanted to think about it. Then the next day he got back to me and told me we could try the treatment. We did a test with dronabinol drops on private prescription.
Kalapa: How has your health changed as a result of the THC?
Anna: It worked well, I had seemingly no side effects. Sometimes I get tired when I take too much. Also, I notice an increase in my appetite, but this is not a negative side effect for me, it suits me because I often have no appetite because of the pain. So for me it is good to eat more.
Later we changed the dronabinol drops to a full extract. I felt an even better effect and no side effects at all with the standard application. I also drive a car with the extract. This is important for me, because I would be lost without a car. In everyday life, I don’t feel any drowsiness from the cannabis – I didn’t even notice that during the dosing phase. Only when I take a higher dose for severe pain do I feel impaired. But then I stay in bed anyway, so it doesn’t matter to me.
The cannabis medicine also has an antispasmodic effect on me. I used to have frequent muscle cramps in my leg when I woke up – it helps well against that. Other drugs against cramps used to make me very dizzy.
Kalapa: Do you have a cost coverage by the health insurance in the meantime?
Anna: I had two private prescriptions as a test phase, then my pain therapist submitted a request for reimbursement. This was unproblematic, the request was accepted on the first try, although my doctor had already expected that the request would be rejected. This just happens a lot. Therefore, the neurologist had also written a letter explaining why he was in favor of cannabis therapy.
Kalapa: Do you need any other medications besides the cannabis extract? And how are you today?
Anna: I take triptans for acute migraine attacks, but I no longer need prophylaxis. For the pain in my leg, I only need a few painkillers. I am employed and can do my job. Because of the pain and the illnesses, I had to reduce the number of hours, but if the solution cannabis had not come, it would not have worked at all with my job. I was caught in a spiral: I called in sick when I was in severe pain, back at work I had to catch up on everything that had fallen through while I was away. Then I got sick again, work stopped again, and so on. This would never have worked in the long run. Today I ask myself why I did not try cannabis earlier.
What is CRPS?
Das Complex Regional Pain Syndrome (CRPS), also known as Sudeck’s disease, is a post-traumatic pain syndrome of an extremity, i.e., an arm or leg. The pain syndrome is associated with severe chronic pain and motor, autonomic or sensory dysfunction. The pain disorder is not yet fully understood. It can occur as a result of physical injury and presents as a combination of pain, inflammatory symptoms, limited mobility and reduced strength, and sensory disturbances.
With a frequency of 2 – 5%, CRPS occurs after injuries to the arms or legs, especially after bone fractures, surgery, and other more severe injuries. CRPS occurs mainly between the ages of 40 and 60, but can affect younger people or seniors.