Hi everybody,

Yesterday I had the pleasure of meeting with my new pain management doctor. I have to say, I was quite impressed. I walked in there figuring that it was going to be another one of those appointments in which I knew more about CRPS than him. I was wrong. He went through describing why I am experiencing the pain that I am, why my symptomatic limbs can feel cold at one moment and hot at another, what vasoconstriction is and how it is making my arms and legs change from red to even purple. He mentioned a few different new medications that could be beneficial, sorry, I tried to write them down but as I was searching for my pen, he told me not to worry right now because my insurance doesn't cover them yet. He used all the right terms and even made me laugh quite a few times. He told me that his whole goal is to reduce pain enough for me to be able to continue pt, which in turn will help me regain some function. I was told that my last PM was giving up too early with meds, that my dosages were still quite low, and it was wrong for him to even suggest SCS already. He told me that because I am experiencing symptoms in more than just my right leg and that he believes I have CRPS II - numbness in 2 of my toes - that I would not benefit from a lumbar sympathetic block. When I asked his opinion about ketamine or lidocaine infusion, he told me that lidocaine would be worthless but I would be a very good candidate for ketamine. He then proceeded to tell me the 3 hospitals within a 2 1/2 hour drive that he believes does them, none of which he is affiliated with - Henry Ford Hospital, U of M Hospital and the Cleveland Clinic, but wanted to try a few things before I make the decision to go that route. The first thing that he wants to try is to continue with the medication that my last doctor put me on - Gabapentin 600mg 3x a day, Amitriptyline 50mg 1x daily which he wants to increase next time I come in, Hydrocodone 10-325 as needed - and he was going to right a script for low dose methadone - 5mg 3x daily, but wanted me to look into it to make sure I was willing to before I fill the script. He explained that it works on the same receptors that ketamine works on and would be a better pain medication for me than the hydrocodone.

Does anybody have any experiences or knowledge about using low dose methadone for treating the pain that CRPS causes?

Thank you all in advance for sharing what you know.

Alaina H.

[QUOTE=PurpleFoot721;1174638
Does anybody have any experiences or knowledge about using low dose methadone for treating the pain that CRPS causes?


So happy you had a possitive appointment no I have not heard of that medication, so I too am interested in this.......

That is awesome news about your visit. Sounds like you have found someone knowledgeable and that really cares.

I have SFN and at my first appointment with my PM dr approx. a year ago we were discussing options for pain relief. One was methadone and it was actually his first choice for me. The only problem was that I would need to have either an echo or EKG (can't remember which) every 6 months. I had 2 reasons for not trying the methadone.
1. I wasn't driving at all due to the pain caused by vibrations in the car.
2. I have already had a heart ablation done to 11 places in my heart for PVC's and I believe this medicine can increase the arrhythmias.....something I don't really want to have to do again....I was wide awake for the ablation....Ouch !

But with that being said I really like what I read about methadone in the treatment of pain. When I'm in a bad flare like right now I do think of trying something else and I could possibly try methadone now that I can drive short distances but would need to talk to my cardio dr first.

Please keep us posted so we can follow your journey

Debi from Georgia

I am sooo happy for you!! What wonderful news! How great to find a PM Dr. that is so knowledgeable about CRPS/RSD! Keep us updated.

Sent from my XT1028 using Tapatalk

There is a major interaction between amitriptyline and methadone:

http://www.drugs.com/interactions-ch...=1578-0,168-74

For safety, all patients with methadone treatment should receive
an EKG measuring the QT segment of the test.

Methadone is known for causing sudden cardiac death in those with a genetic long QT problem. (some of the sudden deaths of athletes you hear about have this)...taking other drugs with the same potential increases this risk in normal patients. Becoming low in magnesium and potassium also increases this risk.

https://www.urmc.rochester.edu/media...olongation.pdf

Thank you mrsD for posting this. I did manage to find a few older posts relating to this. My doctor did warn me about the complications and did inform me and my husband to get me to the emergency room at any instance of even the slightest indication of any heart issues. I would like to mention though, and I know it has been brought up in the older posts, that an interaction occurs at higher doses not at a low dose of 5mg t.i.d. I am glad that you brought this up though.

One last reminder for everybody. My doctor did have the courtesy to ask me to research before I filled the prescription as well as warn me of the possible complications. Medication should not be taken lightly. If a doctor prescribes something, do not assume that they are aware of interactions between any other medication you may be taking, even over the counter. Always check with your pharmacist and double check online.

Alaina H.

Hi there,

I agree all meds should be approached with caution. Side effect profiles and withdrawal syndromes are often minimized IMHO. That said though I did think that one thing about low dose methadone that was interesting was its use for pain control WITHOUT the risk of opiate hyperalgesia which is a real thing to take into consideration, especially for us hyperalgesic folks. IF you decide to go with it were they recommending an EKG ahead of time? My neuro wouldn't start even a low dose of nortriptyline without one. Nortriptyline has a little better side effect profile than amitriptyline BTW since it is a metabolite of ami...in case you are having untoward side effects it might be worth a try.

Another alternative for some is tramadol. I did well on it (short of it giving me headaches) and it works on NMDA receptors. It is another one though that if taken regularly for a while should be weaned off of. It is not habit forming but can cause seizures if withdrawn abuptly. Oh, the things to watch out for!

Thank you Littlepaw for that information. I have not had an EKG done since 2007 but everything showed that, yes, I do have a heart, and it beats normally, unlike my mother, who when they hook one up they tell her there is nothing there, she should be dead... They always hook her up backwards for some strange reason. Perhaps it has to do with the fact that she was a rare instance of those born with all of her organs reversed, but they never believe her, even though she is a nurse practitioner. I am not sure if over the last 8 years there would be a difference but it does make me think that maybe I should call my primary in the morning just to make sure.

I have taken tramadol in the past and as I said in a previous post, it works better for me than hydrocodone but gives me unbearable headaches.

Thank you all for your input so far, especially mrsD. It is nice to know that the moderators of this forum look out for their members and chime in when they feel it is needed.

I'm not sure if it was low dosage or not, but fmichael had a positive experience with Methadone. Research his posts. He hasn't been around in a while but was an amazing asset to the board when active.

I wanted to give everybody here an update.

Friday, my GP gave the the ok to go ahead with my PM's decision to start me on a low dose of methadone. I took my first pill Saturday afternoon once I knew my husband would be home for the remainder of the weekend, just in case I had any issues. I had no side effects other than a little drowsiness. To make things even better, I felt wonderful all day Sunday with no pain other than a little in my ankle and foot, but even that was reduced by quite a bit. I even felt good enough to help out a little around the house the last couple of days but was careful not to over do it.

Yesterday started off wonderful as well. Then, sometime later in the evening, the burning sensation started in my upper back, shoulders, arms and both legs again. It wasn't the worst it has been but bad enough that my clothes and my hair were causing enough discomfort that I had to put my hair up and put on a soft but loose bathrobe. A little later, I started to get a very bad headache, so I decided to go to bed. I tried my hardest to fall asleep, but I just couldn't. The few times that I did, I ended up having really bad nightmares that would make me jump up out of my bed. Needless to say, I hardly slept last night.

This morning, I had a feeling as if I had a severe hangover and as if I were drunk, severe nausea, bad headache, pinhead sized pupils, and I feel off balance. I still feel that way. I have a call into my doctor already with a description of everything that is going on. I am just waiting for him to call me back. Until I hear from him, I am only going to take 1/2 of the prescribed dose. I would stop completely, but I have heard that stopping methadone can cause withdraw symptoms.

I had such high hopes that this would help, especially when I started off so well with it. I guess it just shows that what might help one person doesn't necessarily help the next.

Alaina