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At the end of my rope - Please Help!
7 Replies
Lee2010 - November 15

I, too was wondering where everyone had gone. I had surgery 9 weeks ago, and have been recovering. Had two joints in my ankle screwed together. As a result, my fibro pain has increased and my back pain is much worse. I haven't felt like doing anything on the computer up to this point, but now I'm at the end of my rope and need advice. Going back a bit, when I had my surgery, the anesthesiologist told my husband that the amount of anesthesia that it took to put me under would have killed either one of them. In the hospital I was on a Morphine drip, Oxycontin, Norco, and Demerol. My pain level was still an 8. No one knows what to do with me. My Internal Medicine doc has been wonderful, but now even she is starting to freak out a bit. I even made the trek to Stanford Pain Clinic, but had the most unbelievably bad experience - an example, had an hour long appt., and only saw the doc for 8 minutes and that was only a small part of the awful time I had there. Now I'm at a loss. I can't sleep - tried 3 sleep aids and none worked, they actually kept me awake. Am currently taking Xanax to sleep, but now my doc is worried about dependence and doesn't want me on them much longer. Really? Dependence? Nothing works on me! I can quit any drug cold turkey - and I have - and have not had any problem. How can I get addicted when they don't work in the first place?! I have tried every class of drug for pain and nothing works. I've done acupuncture, massage, herbal remedies, physical therapy - you name it - and nothing works! A different pain specialist that I went to said that the part of my brain that processes narcotics and every other drug was switched off at birth. Explains a lot about my life. Now I just want to crawl into a corner and cry for a week. I'm too young for all of this to be happening! My husband and I would walk together every night, but my fibro would hurt so bad that by the end of the walk I'd be hanging off of him. There is so much wrong with me and all I want is one pain-free day. Just one. I can't remember what it's like not to hurt all the time. I have melt-downs more regularly now, and cry at the drop of a hat. I'm not me anymore. Please, does anyone have that magic bullet? Does anyone out there have the same issue as me? My anesthesiologist had only met one other person like me in 17 years, so I don't have much hope of finding someone like me, but it's worth a try. I feel like a very sore freak.
Anyway, I just needed to get all of this off my chest and see if there is anyone else out there like me. Thanks for reading.
Btw, I really hope that the lack of activity here is due to everyone feeling better and not the opposite. :-)


kvc33 - November 15

Hi Lee, I am so sorry for your seemingly impossible situation. Have you looked into Reflex Sympathetic Dystrophy? It is a pain condition that creates severe pain that is mostly immune to treatment with drugs. I don't know if you have it or not but the newest experimental treatment for it is actually putting someone under with ketamine for weeks and even that doesn't work sometimes. It sounds like you have tried just about everything and drugs aren't your answer. Have you tried hypnosis? I would imagine that you would have to work at it for many months to get any relief but altering the way your brain works seems to be your last hope. Have you ever had your neurotransmitter levels tested or your brain scanned to see what it is doing? Dr. Daniel Amen is a pioneer in brain scans that show where the problem is for people with physical and mental health conditions. I had my neurotransmitters tested with a urine test out of a lab in Florida. My histamine is elevated and my dopamine is sky high causing mental illness.


January - November 15

Hi Lee -- I know I've read this story before - so perhaps I am remembering an older post of yours. I really sympathize! I can't possibly know how very frustrated you must feel to have unremitting pain that is unresponsive to anything. And on top of that, you have to deal with the crazy attitude about not wanting to treat pain or insomnia because they don't want you to be addicted. I have older medical books that say people who really have pain usually respond well to narcotics and use them responsibly (and should not be labeled "addicts"). Most of them want relief from pain, not a high old good time! But I guess big pharma is trying to do away with those older drugs that effectively treat pain, and have fewer bad side effects than newer (more profitable) psychoactive drugs. And the DEA has a lot of doctors very scared to prescribe due to licensing. However it sounds like none of the standard pain drugs work for you.

I don't have any answers, but I think you are doing the right thing posting here -- maybe post on some other medical sites and chronic pain forums too? See if you can find other people with your same problem. The more places you post, the more chance you get of a response. If you could somehow band together you might get someone interested in researching your problem. You might check some of the big universities that have programs and special research in anesthesia and tell them of your frustration. Perhaps SOMEONE would take an interest in your case.

I am stunned at the lack of response by Stanford Pain Clinic! (Well - actually, no I'm not. Medicine is one profession that routinely gets away with billing insurance plenty for doing NOTHING to help, and I think we should complain a lot more than we do about this. We've ALL had this experience!) I would write a few letters (if you have the energy and are able) - to the head of Stanford, and to any other places you've paid for help which you have not received. Post the information online. Write to your insurance company - since they pay the bills they might be interested to know how little you got for (I'm sure) a substantial fee.

Curious to know -- how did the pain doctor decide that the part of your brain that responds to narcotics was switched off at birth? How did he make that diagnosis?

I wish I had a magic bullet, but I don't know. I'd try to find an anesthesiologist who is also an acupuncturist - maybe you got a bad acupuncturist before?? Have you tried melatonin for sleep? I take a lot of melatonin - and "they" say that's risky. I take 20 mg, sometimes more if I wake up a lot. But I accept the risk so i can get a decent sleep. I also take 5 - 10 mg Ambien. I found I built up a tolerance to that when I took it years ago -- but so far, with the melatonin, it's working well, and I haven't needed more. BTW, Xanax is not really a good drug for long term sedation - if you read up on it, it is a short-acting drug, and you build up a tolerance fast and need more. You might ask to try something like Valium - an older drug that is long-acting.

Sorry to hear you had to go through the pain of surgery, and hope you can find something to comfort yourself - maybe even a nice heating pad would help a little. Take care.


January - November 15

kvc -- what lab in Fla. does the neurotransmitter testing - and what do they test for?? Do they have a website about this? Thanks!


kvc33 - November 16

If you go to the website for integrative psychiatry dot com you will find the tests there. The website is actually set up by naturopaths who send out the samples to a lab. That is quite common practice. Most naturopaths don't have their own lab! The neuro test tests for neurotransmitters such as serotonin, dopamine, histamine, GABA, adrenaline, noradrenaline, and more. You get a kit in the mail, follow the directions exactly, and mail back your sample. Before ordering a test though you could e-mail them about your condition and ask if they think it would be useful to you. You can also book a phone consultation. It's not cheap, it will cost about two hundred dollars for the test and about 45 for a consult. For me it was worth every penny. I too, wonder how a doctor came to the conclusion that you brain was switched off at birth. I think that was a guess. Did you know that many people have the same reaction to sedatives as you do, I think it's quite common in persons with autism and ADHD. I would be very interested to know what your results are because I think this stuff is 'fascinating'. However the suffering that you and I and others have gone through is horrifying.


kvc33 - November 16

Sorry, it's dot net not dot com.


Lee2010 - November 16

Thanks so much for your suggestions. I have not heard of Reflex Sympathetic Dystrophy. I will definitely start some research on it. Your idea about the brain scan is also a good one. My mom and I were just talking, and she suggested going to a university (not Stanford) or research hospital and see if they were interested in doing research on someone like me. I have had hypnosis suggested to me as well, so will be looking into all of these avenues for relief. I'll try anything at this point.

Thank you, too, for your long and informative post. I am definitely feeling the panic of docs who don't want to over-medicate me. That's actually becoming humorous to me. The drugs I take would drop a horse. In fact, while in the hospital, my surgeon looked at me and said that with all the drugs I was on I shouldn't be awake, much less carrying on an interesting conversation without so much as a slur of my speech. He was shocked. And the reason this post sounded familiar is because I wrote a similar one many months ago. I guess I was hoping there were some new people around and I might get an answer.
As far as Stanford goes, I came home and immediately lodged a complaint with the department. I spent 45 minutes on the phone and basically let her have it. She sent me a copy of the letter that was sent on to the doc and her bosses. My doc was appalled by the treatment and originally agreed that I shouldn't go back. Now she's back-pedaling and says that I should try a different doc. Frankly, I think that it's a philosophy and a sense of "we're the best and you need to respect us" at Stanford. I wish everyone could have seen how I was treated. I still can't believe it.
The pain doc who diagnosed me was also an anesthesiologist. His diagnosis came after much research into my medical history and reviewing all of my tests. He really didn't know what to tell me - he said that what I have is very rare. I also heard the same thing from my rheumy. I guess that this is something that I have to learn to deal with. Thank heaven I have the most amazing husband on the planet. I was truly blessed to have found him and we've been together 31 years - in sickness and in sickness. :-) I look back at some of the issues I had with medications as a young girl, and as far back as I can remember, meds just didn't work. I could also drink anyone under the table. I can't seem to get drunk. I was always the designated driver since everyone knew I was still sober as a judge. Maybe all of that is connected.

Anyway, thank you both for your concern and ideas. It makes me feel less alone with this whole fibro thing and all the extra aches and pains. Everyone here is so wonderful. I can't tell you how much I appreciate the support. I'm sending you many cyber hugs.


January - November 16

kvc - thanks for the info - it's late, but I will definitely check that site out. I had such a bad time with the antidepressants for years -- nobody ever tested me to see if there was anything wrong with my neurotransmitters! I don't think there was, and after I went through the withdrawals, I got better. So my problem was the drugs - which I never should have started in the first place! Many thanks to Dr. Peter Breggin's book "Your Drug May Be Your Problem!" Amen to that!

Lee - I'm glad you filed complaints and actually got some response. (And you gave Stanford Pain Clinic a little extra publicity too!) There is a certain arrogance in some doctors -- and arrogance leads to big mistakes sometimes. (I have seen it happen.) I'm sorry you've had such a rough time with pain, but thanks for posting about your case. I've never heard of anyone with the problem you describe and it was interesting to learn about it - also interesting that alcohol never affected you. Here's to you finding something that helps.



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