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Off Nucynta, on to the Butrans Patch
8 Replies
Lee2010 - May 17

Hi everyone,
Well, the Nucynta ER did nothing for me. The doc upped my dose and I had no reaction to it whatsoever. I am now on Savella and the Butrans Patch. So far it's the same old thing. Not noticing anything at all. My pain is the same level it's always been. Have any of you tried the Butrans Patch, and if so, did you have any pain relief? I'm going to give it a month to see if it will work over time. I am also in the process of making an appointment with a Pain Psychologist. I will be trying meditation, bio-feedback, etc. Have any of you gone this route and had success? I'm kind of at the end of my rope right now so I'm hopeful that one of these things will work. I'm looking forward to hearing from anyone who has experience with any of these methods of reducing our pain. As always, thank you so much for all of your concern and help. I really have come to rely on you for your support and knowledge. Gentle hugs, Lee

 

Jocelyn - May 17

My son who has OCD, had to go through therapy to help him block out compulsions from the brain. I know this is not the same thing, but it did help him tremedously. He was able to turn his brain down and is off of all medication. I hope something works for you. You seem to have one of the worse cases I have ever heard of.

Soft Hugs and Best to YOU.

 

kvc33 - May 17

Although I don't do it very often, when I do meditate on my pain I can quickly turn the sensation of pain into one of comfortable heat. I can also get the pain to 'move'. Some people believe that pain is caused by blocked energy pathways. That is the theory behind acupuncture. I was quite certain that the Nucynta would not work for you but didn't want to say so. I honestly don't believe any drug will work for you. I'd really be interested to know what your neurotransmitter levels are, and it would give you good information as to what is going on in your brain. You can order a test kit from integrative psychiatry dot com. I also think you would be a great test case for Dr. Daniel Amen who is a pioneer in brain scans.

 

Jocelyn - May 18

Lee2010,

Have you ever had Laser treatment on your spine or anywhere on your body? The reason I ask, is my PT using a Laser, not ultrasound, on my hip and it has stopped pain all the way down to my feet. I was reading about laser treatments and it is starting to be used for fibromyalgia and it seems to be the top choice over ultrasound, accupuncture, etc. It has helped a lot in my recovery. I do not use it all the time, but when needed it is used.

 

Jocelyn - May 18

Oh, and before I was started on Laser treatments, I couldn't walk, my hips muscles were so knotted up they would just spasm and not move. I can now walk my dog again, although, I am not pain free when I walk, I am getting better.

 

Lee2010 - May 18

Thank you so much, both of you, for your helpful comments. I am encouraged by the results that you have seen from the different treatments that you and your loved ones have tried. I am waiting to hear back from the doctor to set up my appointment. I will also ask about the ideas that you have brought up here. I will be getting a TENS Unit next week since that seems to help me after I use it at physical therapy. I will literally try just about anything since I've gotten really tired of living this way. I am so grateful that my husband and family are incredibly understanding and make the needed adjustments to accommodate my limitations. At least I was able to raise my kids and be active with them through their high school years before this hit. I have no regrets about anything, and I really don't think that I would be able to say that if I had been dealing with this any earlier in my life.
I so appreciate you both taking the time to write your thoughts and ideas on my post. I find so much help and so many ideas here. Isn't it wonderful that we have a site that we can go to for help?
I will keep you posted as to what works and doesn't work. As of right now, the Butrans Patch and Savella haven't kicked in, but I still have hope since I'm still in the early stages.
Thanks again and take care. Lee

 

Jocelyn - May 19

Did you know that I never heard of a TENS Unit until I just read it now??? Wow, we learn so much from each other sharing information on this site. I've never used one, but am very interested.

Lee, when you have a chance, please tell me how the TENS Unit works. I know you have such a bad case of Fibro and you have tried more things than I have. It seems like the TENS Unit can be used from at home. Does it do your whole body or do you need to move it around?

I am very curious as this seems to be another great idea, safer than drugs, and hopefully very effective.
Jocelyn

 

Jocelyn - May 19

Oh and Lee, I, lik you am grateful that this didn't hit while my kids were young and I was able to bring them up. I feel so bad for the young mom's who have this awful pain and are trying so hard to have a family and take care of themselves. I don't know how they do it. I give them so much credit.

I do want to ask you if you had any kind of hint from your body when you were younger that may have given you a idea that this may happen.

For me, I really never knew about Fibro, but I had severe allergies and I was tired a lot. I used to blame the fatigue on my allergies, and so did my allergist. I went through 1 year where I struggled with such severe fatigue that I thought I would never get well. Back then, the doctors thought it was all in your mind. However, the fatigue did lift after about a year and my life returned to normal and I brought up my kids and did all the family things. I often wonder if that year of chronic fatigue was a prelude of what was to come for me down the road. It was such an odd things to have happen. It just hit out of the blue, I thought I had a virus.

 

January - May 22

Lee, I so agree with kvc. Check out Dr. Daniel Amen! I know he has a clinic near Reston Virginia, but I think he has a few others around. He also has a lot of books out. If you started Savella, read up on its side effects. Someone posted here last year that Savella had given her persistent bladder infections, which went away when she stopped the drug.

As for psychology, be careful to get a good therapist! There are good ones, but there are also a lot of bad ones - the bad ones just sit there and let you talk, while they do nothing but nod and encourage you. The emotional support is nice, but they don't change anything - you can waste years and a lot of money on them. A good one will be very proactive, give you tests as needed, teach you new methods of thinking and coping, and will gently ask hard questions and confront you to help you change patterns of behavior that aren't working.

As for using thought to help with pain, I'm not good at that - but I know some people who are very good at redirecting the focus of their brains. One woman I know does artwork, and that helps her forget her chronic pain, or at least make it more tolerable.

There is a psychological component to how we perceive pain, and it's individual for each of us, dependent on our past experiences and our body chemistries. Hope you can find something to help you out!

 

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