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Where do I go from here?
5 Replies
Lee2010 - May 29

Hi everyone. I'm having a pretty hard time processing what I just learned from several docs. I had a feeling that it was coming, but held out hope that there was one last thing that I could try that would work. I was diagnosed with FMS about 4 years ago. On top of that I have a bulging disc in my back and an ankle that my podiatrist has to fuse two of the joints together in because I'm walking bone on bone. I also have a disorder that I don't even think has a name. The part of the brain that processes any kind of pain med - and I mean any kind - was never developed in me. Apparently I was born this way. What this means is that I have no way of alleviating the constant pain that I'm in. Yes, I've tried every iteration of every type of drug. Yes, I've tried alternative therapies. And the bottom line is that since that portion of my brain is essentially turned off, nothing works. I can take 3 Norco or 3 Percocet at a time and chase it with a nice, strong Margarita, and I feel nothing. It's like taking one Ibuprofen to me. My pain doc says that it's pretty darn rare, and I believe him since none of my many docs have ever run into anyone like me. I will have 3 different docs working in tandem to make sure that I have some pain relief after my surgery - I guess they're banking on an IV doing the trick. They know that my biggest concern is looking like a drug seeker, but I've never in my life been high - even when on the max amount of all of the different drugs.

I went through a bit of a depression when I got the final word that there is nothing left for me to do, but I realize that I can't live my life that way and have to just buck up and deal with life a day at a time. However, I'm just wondering if there is anyone else at all somewhere on this vast forum of wonderful people that has this same disorder? It would be so wonderful to talk to someone that gets no relief from anything and find out if they have found a secret weapon. I have met absolutely no one in the course of my life that has this problem or even knows anyone who does. And believe me, I know a lot of people. It's so scary for me to think about what's ahead as far as possible age-related issues, or even a car accident, and what I will do when needing to deal with the pain. I can't just operate and get that part of my brain back. It's gone forever - it was never there. As I look back on my, thankfully, healthy life, I realize a lot of things that didn't make sense then, now make perfect sense. For instance, like any other adult nearing the age of twenty-plus years, I drank. But realized that no matter how much I drank, I couldn't get drunk. I was the drinking designated driver. Alcohol just never affected me. Hence the ability to take huge amounts of painkillers, chase them with booze, and still feel nothing. Now I don't drink at all because it doesn't taste very good to me and frankly, what's the point?

So, where do I go from here? Nothing, and I mean nothing, works. I've been to every doc, tried every shot, every pain pill, every alternative treatment and drug that is used for something else, but sometimes works for pain, etc. Nothing I do will ever bring back that part of my brain. No one in my family - on either side, and for generations - had this problem according to my folks. I'm really at the end of my rope. I'm always in pain, and now I get to add to that the realization that nothing will ever work on me. Wow, did I ever draw the winning card.

So, if there is anyone out there with the same problem, I would love to hear from you. Right now I am feeling like I'm on an island all by myself. No one knows what to do or say to me anymore. They help the best they can, but there's not much they can do. I would just like to know that I'm not alone and that there are others like me.

Thanks for reading my rant. Guess I needed to vent and get it out. Hope to hear from someone - anyone.

Thanks again,


kvc33 - May 29

Wow, I'm so sorry that you are dealing with this. I can totally understand how you must feel like you are alone on an island. Since the liver is involved with metabolizing medication, I'm wondering how it is involved with this, if at all. Has a spinal cord stimulator ever been suggested for you? Have you thought about the fact that anethesia works for you? I know of someone who was put under for days in order to change her brain and give her pain relief from Reflex Sympathetic Dystrophy. It is an experimental treatment and she had it done in another country. I'm sure your condition must have a name and when you find out what it is then you may find some resources. Does heat or cold have any affect on your pain? Have you tried hypnosis or biofeedback? Is your pain getting worse or staying the same? How bad is it on a scale of 1-10? Did you know that there are people who are born without the ability to feel pain? I'm wondering if there is any research being done on either problem and whether or not you could be part of a study.


January - May 29

Hello Lee. I'm so sorry for your suffering. This is such an interesting post, as I've never heard of the condition you refer to. Does it have a name? And I'm especially curious as to HOW it was diagnosed? Did they do brain scans or what?? Is it an anatomical condition (part of your brain missing congenitally?) Or is it a neurochemistry thing?


Lee2010 - May 30

Thank you so much for your concern!

kvc - not sure how the liver is involved. I have regular blood tests to make sure that I'm not killing it off and won't need a transplant. We've talked about the stimulator - I'm assuming you mean the one that is implanted to control pain, but a friend had one done and came out paralyzed from the waist down. I think I'd rather endure the pain. Fortunately I do respond to anesthesia as I've had a surgery on my ankle and was knocked out completely. Using hot and cold compresses don't help long term - only for a very, very short amount of time do I get any relief. My pain can be anywhere from 3 or 4 on a really good day to about an 8 or so on one of my bad days. I've had some instances where I've hit a 10 and just don't know how I can deal with it anymore, but then I remember my kids, husband and the days of a 3 or 4 and just try to hang on. I actually have a doc that I commiserated with who doesn't feel pain - she tells some very interesting stories, believe me! I'm on the same coast as Stanford, and my Internist has sent in the paperwork to try and get me into some kind of study, or at the very least perhaps see if I can get into their pain clinic. My insurance bounced it all back the first time and said no, but they are re-submitting everything with high hopes. Thanks for your questions, they were insightful and clearly come from a place of pain in your own life. Hang in there - I know we'll all come out of this some how.

January - As far as I know, this condition doesn't have a name. It's just unusual enough that I doubt it's on anyone's radar. It was diagnosed by going to countless docs, and finally being sent to a pain management specialist who told me that the reason I can't get any help is because the pain receptors that normally are so good at processing narcotics or other forms of pain management just never grew in utero. He said that it's rare, and frankly I don't know if he's even met anyone like me. Even though I hate the answer, it sure is nice to know that I'm not losing my mind when I repeatedly tell my docs that nothing is working. And I'm more than blessed to have an Internist who believes me and is doing her darnedest to help me find some peace and pain-free moments in my life. I have an amazing support team in my husband, kids, extended friends and family and doctors. I can tell that you, too, have dealt with a lot in your life - I spend a lot of time reading up on the posts for ideas and such and feel like all of you are friends even if I can't type and chat every day. It is such a wonderful place to come just to know that you're not the only one in pain and that others totally understand. Thank you for your concern, and I will definitely be researching my condition with more zeal as I'm sure there must be a light at the end of this long, sometimes dark, tunnel.

Cyber hugs to both of you!


kvc33 - May 30

I'm sorry to hear about your friend who came out paralyzed from having the stimulator implanted, but if I were you I'd do some research to find out how often that occurs. I know it is a risk as there are risks with everything, just not how big of a risk. You life is yours though, and you must do what you are comfortable with. It's my understanding that many drugs are used in combination when a person is under anesthesia, it might be worth looking into what they are. Googling around I did find other people who have your condition but didn't find a name for it. It may sound nuts to suggest, but have you tried the gluten-free diet? Some members of this board have had a significant pain reduction with it.


January - May 30

kvc makes a good suggestion about the gluten free diet! I tried it out of sheer desperation, after reading about a man who had severe chronic pain for 30 years with no relief - until he found out he had celiac disease! It helped with some of my pain and really helped my depression. Since I went gluten free I never get the dark moods I used to fall into. And I don't take antidepressants any more.

As for the back surgery - I don't know what the "official" numbers are - but I always ask people I meet about their experiences. I know many people who have had repeated back surgeries. The first one fails, and they do more, and it gets worse from there. I know several people who woke up paralyzed from back surgery. Oops! I know people who had surgery and survived, but the pain came back. I read up on it - and here's the risk. ANY time you open up an anatomical seal - and I'd say the one around the spinal canal is pretty important - you run the risk of introducing bacteria, viruses and prions. And maybe stuff we don't know about. (It is a fact that hospitals are crawling with supergerms and infection control practices are often ignored.) Once it's in there, it's in there, and good luck with treating an infection in your spinal cord. Good luck enduring the pain.

This is just an aside, but I read the comments online after Jeff Conaway died. So many people were deriding him for being a worthless drug addict, but the article I read stated clearly that his serious pain problem started after back surgeries. How do you go thru rehab with Dr. Drew and cure that kind of pain? And why are you a worthless person for trying to ease your pain?

I've met people many places, but especially at the pharmacy, limping in on canes, with and without stim implants - I usually ask "did you have back surgery?" Most of the people I've "interviewed" over the years who did have back surgery said "DON'T DO IT." In fairness, I know of one person who had disk surgery and did OK - and one who was in a body cast for 3 months and came out of it OK - but she keeps her weight down to anorexic level and exercises like a fiend.

I realize, of course, this is not a scientific study; it's purely anecdotal. I have many back problems myself, and that's why I ask. I've had drs. offer to do back surgery, as if it's a minor injection. One guy was supposedly a rehab specialist - he whipped out his little chart and showed me how "easy" the surgery would be. When I said no and asked for more conservative treatment, his eyes glazed over. I didn't even get a PT referral, and I asked for one. He knows where the money is.

Back to you, Lee, I'm glad to hear you have such good doctors (that is hard to come by!) and people who believe you when you tell them how you feel, including a supportive family. It sure would be worth checking into alternative methods of pain control, including things like hypnosis and acupuncture - but you say you tried alternative treatments. So I hope you can get into an experimental program - perhaps they can tailor something just for you. I give you kudos for hanging in there with what sounds like a miserable situation.



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