Could really use some help ... When it flares up it is unbelievably painful and literally takes your breath away when it is at its worse and it can last from days to weeks to literally months. Does anyone else have any experience with this disease and if so I would really appreciate your sharing and/or suggestions on pain management and what I can do to avoid triggering it. :(
I also have this and I have found nothing really helped but I do take muscle relaxers and pain med's for other things. Also NSAIDs and Antidepressants, specifically a category of medicines called tricyclic antidepressants, if pain is making it difficult to sleep at night. Mine went away, but when it comes I feel like I'am having a heart attack.
Hope you feel better.
I have been suffering from this for about 12 years now, and for me it has gotten worse in the past 2 years. I believe it may have started with my very first collapsed lung in 2001 (I have had 4). There is no lab test or procedure that can "prove" this. I just had an MRI of the left side of my neck, down my side into my left arm and it showed nothing. Luckily I have a PM (Pain Management) doctor that believes me, and even told me he HAS had patients he suspected may be faking or exaggerating (for pain killers obviously) but he didn't think that of me. I actually asked about Nucynta, which is brave for a pain patient because the golden rule of pain management is NOT to ask about a specific medication especially if it is a narcotic. But, since it is a newer brand and is *supposed to not be as addicting (and also has an analgesic in it) I figured I would ask. He had no problem letting me give it a shot, and said I was only his second patient on it. He explained that he doesn't like making his patients guinea pigs. He gave me the lowest dose first at 50mg and it helped but not quite enough, so I called in and asked if it would be ok to try the 75mg, and yet again, no problem. I really love this drug, and pain docs are starting to try and switch their patients off of every other narcotic to Nucynta. So, if you want you can ask to try it, but remember, every medication works differently in each individual. If you get it, since there is not yet a generic, you can go to the official website and print out a coupon that will ensure you only pay $25 for it. You can use it up to 14 times a calendar year, then when it's done, just print a new one. I have had no problems with the coupon. Side effects are pretty much headaches, but I am trying to spread the word (asked and okayed by my doctor) that you CAN take acetaminophen or knockoff brand of Excedrine Migraine/Extra Strength (they are actually the same exact thing) because the Nucynta does not contain any acetaminophen. It does not make me feel high per se, but I do feel what I describe as "calm". I am currently taking 75mg every 4-6 hours as needed. The ceiling for this is 600mg a day, and the way it is formulated, it should take your body longer to build a tolerance, and a dose increase. Any other questions, just comment and I will respond ASAP.
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