I am so glad I did not try what my pain doc prescription yet because it did not sound right to me. After reading the links provided by others, I now have a better understanding of this drug and ready to start it slow.
Thanks.

Before you do this, is there a reason why you can't give your doctor print outs of the correct info so he can prescribe the correct medication compounded for you? This will prevent him from making the same mistake again for other patients too.

Water therapy is very good for CRPS. I find water at about 95 degrees Fahrenheit to be very comfortable for me. Then I can move my CRPS foot in it.

There is a great deal more PT that can and should be done, but you would need someone trained in it to work with you.

I am taking buprenorfin since 2004 (pain patch + sublingual pills for breakthrough pain). I wonder how this medication compares to the low-dose naltrexone.

Numb,

I was not given blocks, because the WC Doctor said they work best on early CRPS. I was not diagnosed until almost a year had passed, even though I had a classic presentation of the disease.

The LDN must be refrigerated and it is good for more than a month. Do not be wary of DIY LDN. It took me a month of trepidation before I mixed it and used it. When I look back I cannot believe I delayed. If you can measure you can do this.That video is what motivated me.

BTW, you do not have to shake the mixture everytime. Once it is mixed the LDN stays in suspension, the sediment is filler, which I prefer not to have in my LDN. Also I use a metric measuring cup to measure the water, much easier and faster than siphoning it out of that big bulky jug.

The therapy I have is 2x a week in a warm, salt water swimming pool. I am currently working out with hand weights which have made my workouts harder, but will hopefully help me gain strength and stamina. I still cannot tolerate the AC in the changing room, so I change in the sauna.

When I first went to PT and had to change clothing, I literally fell over with pain and exhaustion. Just carrying in a bag with a towel was too much. I couldn't open any of the doors either. I am much better, improving incrementally. If WC refuses to pay for more of this therapy I will fight them and I will join this facility at 100 a month, because I believe the water therapy is key to regaining full mobility and strength.

Becca,

Numb is lucky to get the 50mg pill. He will have total control of his dosage and will not suffer needless delays: between contacting his doctor and waiting on the pharmacy. And he will be 100% assured of full potency, which is not the case with compound pharmacies-compounding FYI is not FDA approved.

I agree with giving the Doctor information, but many doctors (if you can find an LDN doctor in the first place) do give patients the 50 mg pill to dilute themselves, to save on insurance costs.

Facebook has a great site called GotEndorphins with lots of active members posting about LDN. Many there mix LDN themselves. Also, it is a good place to do research.

My pain decreased significantly on LDN, but not near enough to allow me to stand on my RSD foot. Only when I got in the water did the pain lessen enough for me to put weight on my foot, which is why I believe that both modalities are needed to regain mobility. When I am in the water I am close to being pain free.

Plus it is the gift that, at least for me, keeps on giving. I had to go off LDN for several weeks for a surgical procedure and I have not needed to take pain meds at all. I do have pain, cramping and electrical surges, but at bearable levels.

My impression was he does not like to discuss medications on the phone. Perhaps I can try to call him. I will be on vacation starting this Thursday, out of state, so compound may not work for my situation right now.

Thanks for your sharing! What is sublingual pills for your breakthrough pain that you use. In addition, can you take iburprofin indefinitely or you just take it as needed.

Buprenophine is an opiod based medication and should not be taken with Low Dose Naltrexone (severe side effects may result).
From what I've read many people prefer to take LDN because it has few side effects and is not addictive like opiods and other meds. Often they've tried several other medications and encountered problems before trying LDN or they may not be able to take other medications due to interactions or intolerance.

Naltrexone (50mg) was originally developed as an anti addiction drug for opiods. (like Antabuse for alcohol) but was later found to be partially effective for pain relief, of some conditions, at low doses. It's also recommended that alcohol not be used concurrently with LDN. The links provided above contain useful information but as with all medications individuals can react differently (it's also useful to search subjects such as "LDN doesn't work"), as many of the sites trend towards being overly positive.

Here's a couple of other useful links:

https://www.ldnscience.org/

⭐Low-dose Naltrexone (LDN) Fact Sheet 215

I'd recommend reading as much information as possible before starting and depending on your conditions/symptoms to start low (1mg) and increase slowly (0.5mg or 1 mg every 2 weeks) - particularly if you have previously used opiods. Also recording doses, side effects, pain levels etc is useful to monitoring progress and efficacy.

Thanks for clarifying, bluesfan. I have been consistently fine where pain control is concerned since 2004, since taking Neurontin + buprenorfine (pain patch + breakthrough pills). So, if it ain't broke don't fix it, I guess.

I take ibuprofen when I get migraines, that's all, not for my CPRS. And the sublingual pills I am taking are only on the market in Belgium so that won't do you any good. :)