u/RevolutionaryFun9883

Being in the UAE, it is next to impossible to find a specialist in CRPS, like what you see in the States. After seeing two other pain management doctors I was referred by my surgeon (I developed CRPS post knee surgery for a hypermobile lateral meniscus) to a pain management doctor who is a consultant anaesthesiologist. While not a specialist in CRPS explicitly, at least he does know about it somewhat, and he is willing to test treatments that have shown efficacy. Unfortunately it seems that everything is an uphill battle with health insurance and even the hospital sometimes, which is mentally taxing when coming from the UK public healthcare system.

Fortunately my doctor was understanding of my pain and prescribed OxyContin which helped. Now I know that many of us have been on opioids and while I believe they do help with the pain in the short term, in the long term I believe they only make the situation worse. The problem with opioids is they activate glial cells, which further inflame the nerves and leads to the well known opioid hyperalgesia - adding this to the hyperalgesia caused by CRPS it appears to be a recipe for disaster (or pain).

Enter Low Dose Naltrexone (LDN). As a lot of you may already know LDN has shown promise for treatment of nerve pain, and specifically within CRPS. Think of it as the anti-opioid medication, which instead of being an opioid receptor agonist like OxyContin (and other opiates), it is actually an antagonist, which blocks the opioid receptor from receiving any other substance that might activate it. This leads to the small amounts of natural opiates being available in the body that provide their own pain relief. It also deactivates the glial cells lowering nerve inflammation (due to its NMDA antagonist properties). So it seems like we get the best of both worlds in that regard.

The only issue is, I now have to wean myself completely from the opioid medications in order to use LDN, otherwise it could cause severe opioid withdrawals.

Now, my insurance does not want to pay for me to have the ‘experimental’ ketamine infusions by pain doctor has been requesting, so I will likely have to pay for this out of pocket (and I’m waiting for a quote on this to see if it is affordable), as the doctor seems to think it won’t cost much more than £100-200 per session.

I am certainly looking forward to starting my LDN next week after I’ve weaned off OxyContin with the help of a psychiatrist who will provide medications to help. From my research it seems that LDN can attenuate the anti-depressant benefits of ketamine and I’ll need to do further research to see if there is any evidence it can help with the benefits for chronic pain but I may err on the side of caution and not take any LDN during and shortly after the ketamine infusion period.

For those of you that have been on or are still on LDN, how has it helped you with your CRPS?

Hopefully this wasn’t too long or uninteresting, and if you made it this far - thanks for reading!

I will be back in a few weeks to provide my anecdotal experience with both LDN and Ketamine for those who are interested.

This is a relatively new area of research but it looks promising, with some treatments available in Mexico and Canada.

https://journals.physiology.org/doi/abs/10.1152/physiol.2024.39.S1.1689

https://pmc.ncbi.nlm.nih.gov/articles/PMC10502345/

For some of you that think you may have run out of options, this is something that might be worth further consideration.

I just had a peruse of the website and it no longer displays prices for the Ligne 2 lighters, is this the same for everyone or is it a bug?

I know they’re not exactly supposed to be flicked, but the main issue I’m having is the knife is very stiff. I’ve taken it apart and cleaned and greased the pivot assembly, and if I push the lock bar it does allow the blade to move freely in the pivot (silky smooth).

The problem is coming from the lock bar which when I first got it was unbelievably tight, to the point it was hard to unlock the knife. I have adjusted the lock bar tension while it’s apart and it has helped but it’s still so tight that it won’t let me flick the blade at all, but if I relieve any more tension on the lock bar I don’t think it will lock up safely.

I’ve probably opened and closed it at least 500 times now, what else can be done? Should I just keep wearing it in? I do love the knife though, it’s exceptional and despite being second hand from 2019, the previous owner must have just kept it in a safe the whole time 😂 it’s brand new!

Hi all, I’ve come to join the club. First off a bit of background -

I had surgery on my left knee for a rare condition called hypermobile lateral meniscus on March 6th, I’d been waiting 14 years to have this diagnosed since due to its nature it does not show up on an MRI. It progressively got worse over the years to the point where I had constant pain in my knee whenever I walked.

The surgery went well, I had a brace on for 4 weeks but I started to notice my left foot getting extremely hot and what felt like very high blood pressure from the calf down, like my foot was going to explode. At first I assumed it was DVT but after a trip to the emergency room this was thankfully not the case.

Then after 6 weeks post surgery I was still in a lot of pain, so I went to see a pain management doctor who identified it as chronic pain syndrome - however she was pretty useless and would not prescribe any good medication for the pain (I had been on oxycodone from week 1-5) and instead wanted to go straight to a nerve block. This lady was useless.

At 7 weeks when I had my second follow up with my surgeon he diagnosed it as CRPS, referred me to a very good pain management doctor and gave me some more pain medication. I had spent nearly 2 weeks without any real pain medication which was hell.

At 8.5 weeks I had my appointment with the new pain management doctor who has 27 years of experience and has dealt with CRPS patients throughout. This was a godsend, since he confirmed the diagnosis of CRPS and has now given me a plethora of pain and inflammation medication including 75mg Lyrica and 10mg OxyContin. This has finally allowed me to get some consistent sleep which I have been struggling with this whole time.

Now to the point of my post, this latest pain doctor has recommended I undergo cryoablation on the nerves in my knee so that I can get on with the physiotherapy without the pain that has made it prohibitive at some points. Has anyone had experience with this? It is going to be done alongside a ketamine infusion while I’m under general anaesthetic for roughly 4/5 hours.

If anyone has had the procedure or knows anything about it I’d love to hear your experiences and/or thoughts.