Sunday, October 20, 2013

Methadone, weight gain, low carb, low fat and any other diet out there.... in relation to CRPS.

Have just dropped David at the airport, and now I have been researching, methadone, constipation, low carb, low fat and many other diets related to methadone and the other 7 different meds I am on in a day.  I have just  changed to Tramadol slow release which means I am taking 6 less meds a day, now I am on only 45 meds a day instead of 51 lol. 

Methadone is known to cause weight gain, anything from 25 lbs to 70 lbs.... which I knew and also it is  known to cause constipation, especially when combined with some of the other meds I am on. Constipation also seems to be a common link to low carb, no wonder I got so ill with constipation the other week. I am not going to talk about what I all read but it has been interesting and I am going to research more stuff throughout the week. One thing I did learn is that methadone constipation is so different to food constipation, hence why most of the common treatments did not work for me.

CRPS has a high suicide rate,  and also can have a relatively high death rate as it spreads throughout the body and over the years, I have heard of people leaving their painful life to go live in a place where there is no pain, though I had not met these people personally, I had spoken to them through support groups. 

There is no cure for CRPS, though ketamine holds great promise for CRPS patients. It can be currently administrated in 3 ways, though none of these ways are available in New Zealand. 

  • First is a low dose ketamine infusion, done as an inpatient, a lot of these patients have had a zero pain for many months even up to years. 
  • The second way is infusions done over days as an outpatient, as this is more of a stop start method, it does not get the same results as the low dose ketamine inpatient infusion.
  • The third way is a high-dose ketamine infusion, currently this is only done in Mexico and I think Germany, and at this stage there is only 1 person I have heard of in NZ who has gone through this process and that was a success. This is relatively new so there is no long-term data yet. This is where the patient is placed in a coma for 5 - 7 days and given high doses of ketamine, this treatment is very risky. From what I last heard, it has a 50% success rate. This treatment can cost anything up to $200,000 but this is a last resort for most people and if they did not try this, they would have died. 
Due to the success of ketamine, it really is worth looking into it further for the treatment of CRPS, but it wont be in my generation :(. So what is ketamine - it is known as special k in the party world, as it is a hallucinogenic  drug originally used as a medical or veterinary anaesthetic. It can alter sensory perceptions often resulting in an out of body experience sometimes referred to as going into the 'k hole' and it is also known as the 'date rape' drug. This drug that is nasty in so many ways, could just be the key drug that people with CRPS can use to have their life back. 
There are also many other side effects with CRPS, MS is one, cellulitis is another, we have to be very careful when we injure ourselves, something as simple as a scratch can take many weeks to heal and can leave a scar. Because of the high doses of medication we are on, it can give us brain fog, slurred speech, double vision, dry mouth (which causes bad teeth), and many other things. 

It is not all bad though, with good physiotherapy, and an excellent pain specialist as well as psychologists, and a good drug regime if thats the route you take can give you a pretty good lifestyle. It took me a long time to find the right medication and after many failures, methadone was the drug that turned my life around. Yes I gained some weight, yes I am constipated, but I also don't need to use my wheelchair nearly as much anymore, my pain levels 75% of my time are at a workable level, and I am now even thinking that I might be able to even start part time work in the next few months, so life isnt to bad for me right now :)


  1. So glad to hear you looking at the positives for you - a great attitude to have !
    Good luck with the part time work when you are up to it.
    Have a wonderful day !

    1. Thanks Me, feels a bit strange calling you me now, that we have met lol

  2. keep up the research. Anything that makes this disease easier to live with is worth it.


    1. Thanks MargieAnne, research is good, and you never know you might find something that could just work :)