New PM and Low Dose Methadone
 

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.
:hug:
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:hug: no I have not heard of that medication, so I too am interested in this.......:grouphug:

Hey PurpleFoot :)
 

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.
:hug:

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.
:hug:
Alaina

I don't know much about ldm....when I was put on ldn, my neuro said to at least try it for 3 months to get a true feel. It wasn't pleasant.... Eventually nausea plus did go away. I am not a year into it and I have a tic.....
Please let us knoiw what your doc says.....
I am so sorry for how you are feeling and wish you the best through this medicine journey.:hug:

Shoot.....I'm sorry. That really stinks. I hope you are able to find something helpful ASAP! Hugs.

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Methadone takes about three to four days to get up to a steady state in your blood. Just an FYI so you don't expect miracles in the first few days. It take a long time to get in to your system and a long time to get out of your system. E

I had great success on methadone 5mg tid for my crps. I found it worked much better than other long acting opiods that I tried.

Good luck with it and expect that because of methadone's long half-life you will need a few weeks on the medication before you decide if it is really helping.

Also, methadone leaves the pain receptors, long before the half life is over. So pain relief may shorten, but the drug is still in your system afffecting other things. Doctors tend to increase doses, because of this, and that is when people get into trouble with this drug. Increased levels in the body can bring on a QT event or cause respiratory depression.

I did receive a call from my PM this morning. He asked me to stick with it for a little longer as it takes some time for the body to get used to it, just as gigicnm mentioned. He also told me, if it continues to give me problems, try decreasing my dose to see if that helps.

Last night, I did start feeling a little better. When my doctor called, I asked if it was possible that I was just experiencing withdrawal symptoms from all of the hydrocodone that I have had to take over the last year just to have a little relief. All of the symptoms seemed to be very similar and I have not had to take any over the last few days. I was told that it was a possibility. Hopefully, that is all that it was and I am through the worst of it now.

Thank you all for your opinions and support.
:hug:
Alaina

Alaina- thank you for starting this thread. I am curiously reading your progress as you start this new med. For me it seems my body gets fooled by something new so i feel great the first few days then crps says ok i've figured out this new med and just starts acting up again like its old self and i'm back to feeling crappy. So i really hope you do well with this cause maybe it would be worthwhile for others to try as well. Please post an update if you can :)

happygirlpa;

It seems to me that I am experiencing the exact same thing. Every time I have been given a new prescription, or a prescription has been increased, I feel wonderful for a few days and then, blah! I have only been on methadone for a little over a week, but so far, my pain levels were down quite a bit when I first started taking it. Now, it is starting to creep back up a little each day. I have noticed that I have gained a small amount of ROM in my toes and the joints within my foot, so I can say that I have gained a little from it. I just find it a little confusing how my body and the CRPS seem to react to the prescriptions wonderfully for a few days and then it goes back the other way. It is the scariest roller coaster ride I have ever been on in my life, and it seems there is no end to this ride. I am so frustrated and scared.
:hug:
Alaina

Alaina,

Had not seen this post when I PM'ed a moment ago. Confusion, frustration, fear and pain do not sound at all better. The feelings that go along with all of this can be so overwhelming at times. I think too when I try something new I get my hopes up and then CRASH big time when it doesn't work at all or as well as I had hoped. I know little about the meds you are on so I had not commented on the thread, but have kept up. I cannot offer any suggestions, but know that I'm pulling for ya. Take care of yourself. ~mac

I am sorry
 

I wanted to take a moment to apologize to anybody that may have been upset by a previous post I made about me actually having a heart. I realize now that it sounded a little bit as if I were lashing out at somebody, but to be truthful, I was only making a sarcastic joke about myself. I thought at the time that I was only self-deprecating myself but apparently others here did not take it that way.

I may be wrong on that and perhaps it was me saying that my own mother is heartless as I was trying to say my mom is one of the few who has to deal with situs inversus, which is true. Please don't get me wrong, I love my mom, but I do think that she is a little heartless, so yes, I did intend what it sounded like. Why is it that I think that she is heartless? Well, here is what I have to say.

When my sister was married the first time, her and her husband were living in Texas to be closer to his family. When Christmas came around, they ended up spending their first Christmas with his family. This was the first Christmas that our family was not entirely together. Because of this, my mom stopped talking to my sister for nearly a year. My sister and my mom did eventually get along again until my sister got divorced for the second time. My sister had her reasons for this, but my mom did not agree with her reasons, so she completely disowned her from our family. They still talk from time to time but not like they used to.

Removing one daughter from her family was not enough. My mom and I had a argument back in 2006. At the end of the argument, she told me to leave and never come back and never call again. After a year and a half, my dad finally stepped in and brought us together to talk again. It was never a caring conversation again like we had in the past. I always felt as if I was talking to someone who completely despised me but was forced to be nice to me when I was around. We never were able to regain the relationship the way it used to be.

Two years ago, my mother-in-law was diagnosed with cancer and going downhill very quickly. My husband and I were the only ones who were capable of taking her in and caring for her. We ended up missing my family's Thanksgiving and Christmas that year since we were caring for my mother-in-law. Taking her with us three hours away, when her family was all close to here was not an option. My mom was furious at the fact that we could not make it for the holidays for her own sake.

In July of last year, my mom decided to host a family reunion. By this time, my mother-in -law was in a hospice program while living with us. She was having a nurse come every other day to check on her. Once again, we could not make it. You would think that an oncology nurse would understand. Nope, she once again told me to never show my face around her, and never call ever again. In October of last year, three days before her 76th birthday, my mother-in-law passed away.

Now that my mom has disowned both of her children, my aunts and uncles, her brothers and sisters, were quite upset with her. Because they did not agree with her, she no longer talks to them either.

My mom seems to remove everybody from her life that does not agree with her completely. This is why I feel that my mom is heartless. I have ignored her request to stop calling her. I call her almost once every week. I have not entirely worked her back into my life and I know our relationship will never be the same as it was years ago, but I still love my mom and still need her.

I am sorry for the long rambling post, but I felt it was necessary to apologize and explain why it is I said what I did. I hope that those that I have hurt can forgive me. I do not like feeling as if I have hurt someone else.
:hug:
Alaina

Expressing oneself in a limited medium without the benefit of body language and voice can be fraught with peril. Subtle nuances get lost and what you meant to say may look like something completely different to the reader.

I don't know if you offended anyone or not but I certainly didn't see anything inflammatory in your earlier post. Human relationships are complicated. Parent/child relationships are sometimes extra complicated. There can be a lot of hurt there that leaks into other things. It sounds like you might have been worried that it seemed you were being harsh to your mother. I took your comments as sarcasm and not something mean. Even if I did take it as something mean, you do not present as a callous person, so I would just assume there is history there. My relationship with my own mother isn't easy. Some people are difficult, not just with family but with everyone. It is good that you show so much love to your mother even when she is difficult. Just make sure you take care of you too.

I can't speak for anyone else but no worries here! Remember, "We're human...and I like that!"

Sleep easy, you did nothing wrong.:hug:

Purple,

The holidays bring out the worst in families IMO. I despise them, because of unrealistic expectations and my own history of family dysfunction. My dad had undiagnosed PTSD, which was violently manifested during holidays. At the end of his life when I charted his WWII battles they dovetailed exactly with Thanksgiving and Christmas.

My mother, a narcissist, would rile my father up, making every family gathering a replay of the last. Nightmare is the best word to describe my life. I believe I am in a constant state of high alert from the family insanity I endured and tried to unsuccessful fix for 6 decades. I wonder if it contributed to contracting CRPS.

I suspect your mother cuts people out of her life to punish them, because they would not do her bidding. Off with their heads.

Research has shown that childhood trauma changes the brain. I grew up where staying on high alert was necessary for survival. Though I have worked through many of these issues, I am still highly reactive to my surroundings and hypervigilant. I have often wondered if this early hyperarousal of the sympathetic nervous system did not have something to do with me developing CRPS??? Will never know, but I find it an interesting thought. And NO I am not in anyway saying this is all in our heads (just for clarification.)~mac

Hi mama mac and Biobased,

I, personally, feel it's quite possible that early trauma and resulting hyperarousal/hypervigilance may contribute to the mix, may make some people more vulnerable to CRPS and/or to other chronic conditions.

:grouphug:
DejaVu

Hi Alaina,

I had never interpreted your post as sarcastic. I only understood that your mom has a real condition where organs are reversed.

I agree so very much with Littlepaw's post on this.

I have some unforgiving relatives. Some of them have refused to talk with one another for 30-40 years. I fail to understand how these types of tactics help anyone and I certainly won't play along.

Life is too short, hearts/souls too precious.;) I truly do not understand it and don't have the heart for leaving issues unresolved and acting as though loved ones don't exist.

Sounds like you are handling a very tough situation as sanely, as honorably and as heartfully as possible. ;)

:hug:
DejaVu

DejaVu,

Thank you for that. I understand why so many people here love to read and follow your posts. You are so supportive.

I wonder if anyone has ever done any type of study on this..

WOW, I am glad you found such a great doctor. I had a great doctor, and he retired last year. It's been 10 years, 3 ketamine infusions, meds, meds, meds, LDN, Sympathetic blocks, and finally SCS. The scs works kindof it just masks the pain, the way oxycontin does, makes me think of something else. I think I will try ketamine again. It worked for 2 weeks I was pain free! I was like a kid on Christmas morning, the world could not be more perfect. Then it came back.

PurpleFoot,

Multiple studies have been done in this area often showing mixed results. Almost any research in behavioral science (including trauma research) is difficult to prove using scientific standards because it is unethical to interfear with or manipulate a human being therefore variables cannot be tightly controlled. We can say there appears to be a relationship, but lack evidence to say there is scientific proof. With improved brian imaging, genetic studies and medical testing I hope we can better understand how the mind and body work together. This to me is key in understanding and treating CRPS and so many other illnesses. If anyone is interesting I can provide links to studies or this may have been quite enough (or too much) of an answer. :eek: ~mac :hug: