As I have posted before, recently I withdrew from Neupro with the help of Buprenorphine. It has been 6 weeks now without any dopamine agonist and my experience has been overwhelmingly positive. Unfortunately, issues have come up recently that I thought someone might be able shine some light on them for me.
One of the symptoms I experienced during augmentation was severe burning in different parts of my body. Feet, thighs, groin, arms and even just above my right eye. The burning could occur at any time, day or night. If I had managed to sleep, it would wake me. Day or night, it often took 4 or 5 hours to go away.
Once I started on Buprenorphine and began the process of withdrawing from Neupro, the burning diminished and then disappeared along with my other RLS symptoms. So began my new and improved life, free of RLS.
However, over the past 3 weeks, I have started to feel the burning again. Not severe, but nonetheless not a welcome visitor. This time in my knees and the last two mornings in my feet. At first I thought the patches might be losing effectiveness because the burning was happening on the 4th or 5th day of a patch. But this morning is only the third day of the cycle for this patch and I have felt the burning yesterday and today.
When I get up and move around, the burning thankfully disappears. This was not always the case when I was burning during augmentation.
Does anyone have any ideas about what might be happening? Are RLS withdrawal symptoms breaking through and the Buprenorphine dose too small to cover them?
I am still sleeping well, at least for me. The burning does not wake me in the middle of the night and does not show up during the day. I can tolerate the level of burning I am experiencing now but if the severity increases it could be a problem. It goes without saying but I will say it anyway, this is alarming.
My current dose of Buprenorphine is a 20mg 7 day patch that I change every 5 days. Also, I am taking 150mg of Pregabalin at night. None of the other medications I take exacerbate RLS except possible pitavastatin, but it has not been a problem in the past.
Oh RLS, so unpredictable!
Thoughts?
And, as always, thank you!
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RiversW
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This is just a thought Rivers, and not an informed one: you should take medical advice (or someone here with more knowledge might have a better suggestion).
"Sharp, jabbing, throbbing or burning pains" in various parts of the body can be a symptom of peripheral neuropathy (Mayo Clinic). This type of nerve pain can be treated in various ways including with pregabalin: it may be that you might benefit from a higher dose of pregabalin, but this needs to be considered in the context of your other meds.
I stress again that you need to seek better informed advice on this.
Thank you for your thoughtful reply. You may be right, perhaps the burning is caused by neuropathy. But isn't it odd that when I started Buprenorphine, the burning disappeared along with all the more common RLS symptoms. Also, I should mention, that when the burning appeared 3 or 4 years ago, the classic symptoms disappeared entirely. I would go for weeks with horrible burning , but none of the creeping sensations or the urge to move. In my 30 years with RLS, I never really had a respite from those symptoms, even for a day. Every morning, without fail, I woke up with the all too familiar uncomfortable sensations in my legs. I had none of those when the burning was present but when it stopped the classic symptoms returned. They never happened at the same time. The only logical conclusion, it seems, would be that the burning was just another unpleasant symptom of RLS that decided to move in when the more common symptoms took a vacation.
It's strange I know, but it is RLS!
Hopefully the burning is an anomaly and will not continue. I must admit when I felt the burning in my feet two days in row, I was alarmed. However, next week, I see my neurologist and will ask his opinion. Perhaps, as you suggested, he will raise my Pregabalin dose up from 150mg a night just to cover all of the bases. I would like to go in that direction anyway. More Pregabalin and less Buprenorphine if possible.
Hi Rivers, congrats getting off of the Neupro patch!, I doubt that your burning will get more severe. It took me about 18 months to rid myself of the patch. During that time, and after, I would get both jolts through my body and burning in various places. It never got worse, always the same intensity. It didn’t last too long, so hang in there. If it does get worse, talk to you doctor. However, I suspect it might be a symptom of withdrawal.
I cannot tell you what a welcome gift your response has been. For the first time in years I have been actually sleeping most of the night. When the burning returned, I was, to say the least, alarmed. Though I understand that it is impossible for you to say with certainty what accounts for the burning, your response at least gives me hope that it is a symptom of the withdrawing process that will hopefully pass and not it's not peripheral neuropathy. Peripheral neuropathy is yet another malady that is difficult to diagnose and treat. I have left a trail of neurologist behind me who , unsuccessfully, tried to either prove or disprove that my symptoms, specifically the burning, were the result of peripheral neuropathy.
Of course I can’t say for sure that your burning is due to the withdrawal. I don’t have peripheral neuropathy. It never even occurred to me that it might be that because I had so many other strange symptoms during the withdrawal process. My fingers are crossed that it is another withdrawal symptom 🤞🏼
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