Has anyone experienced internal vibrations?

@maggie1960 I hope today finds you well. I agree that you've got to do what makes you feel most comfortable and confident in your doctor, especially when exploring new territory. When are you due to go over existing test results?

Hello @dat. There sometimes is not a simple explanation and there may be mitigating circumstances that muddy the waters. You mention GI issues and vibrations. Your doctor mentions hypersensitivity and anxiety. I understand you feeling frustrated and wanting answers.

How long have you been having severe GI issues? Do you have any other symptoms? I ask because I'm wondering if you have learned about Central Sensitization Syndrome?

Her idea of going over existing test results is posting them for access through the patient portal. When I messaged her through the portal about answering questions her nurse replied for her, saying she, the nurse, had called me the morning after the test results were posted to ask if I had any questions. I hate to call anyone an out and out liar but I never received the phone call, and there was no voicemail message from the nurse. The most the doctor did was to write a couple of little notes out to the side of a couple of things that were out of range saying I could discuss them with my primary care physician. Obviously she did not think it important enough to discuss with me, or that there was no relation in the test results to neuropathy. My primary care physician has been out of the office for two weeks and I won't be able to see him until Sept 2. I am scheduled to have a nerve conduction study on Sept 1.
However, I may delay that since I am in the process of finding a new neurologist. The referral for the one I want to see should be processed by tomorrow. He's very hard to get in to see so it may be awhile before I can get an appt. However, my follow up with the current neurologist isn't until Nov. 17th, so I probably will be able to see him before she wants to see me again. At this point I'm not even sure why she want to see me again since she has no comment on test results and won't answer questions.
I've been on gabapentin at 300 mg 3 x a day for about 10 days, as prescribed by her, with no relief whatsoever. I know it takes time for it to kick in, but I just didn't realize how long. I messaged her today to ask and she said it takes 4-6 weeks. My pain is worse on some days than others, but particularly bad at night. I asked her what can be done for pain while I'm waiting over the next few weeks for gabapentin to "kick in". Her answer was to take tylenol or ibuprofen, and other than that there were no alternatives. I told her that those two medications don't make a dent in the pain when it is at it's worst, and that it was a sad state of affairs that the medical profession could not do better to alleviate someone's pain. She had no reply to that which did not surprise me. I guess you can tell I am more than frustrated. A friend of mine jokingly said, well if nothing else helps just have a martini. Good thing I'm not a big drinker.

Ive had GI issues for one year now severe gastritis, lots of pain and discomfort, and I am not able to get help with it. I have seen a couple of GI doctors but they really haven't helped me. Of course they say anxiety, and I always feel they say that when they can't figure out whats wrong. My GI issues have caused low appetite and the internal vibration sometimes making me feel light headed and weak in the arms and legs a bit. I haven't heard of Central Sensitization Syndrome.

@maggie1960 Ah, yes, the portal. It comes with good, it comes with not so good communication. Posting results are great, but I agree, it does lack personal connection, especially when patients are emotionally invested in their health and may have fear and/or anxiety over the unknown. It's unfortunate about the missed call. The good news is that what they've found so far is not worthy of emergency and it sounds like they are willing to discuss if you called back the nurse. Maybe it's not worth it as you are leaving that practice.

What I found was that most of my doctors (except my PCP which I was lucky to have, he's since retired) were focused on providing the facts and not so much bedside manor by relating to the patient's concern and worry. I was guilty of major worrying which added to symptoms and did me no good. It's difficult though and I do understand the frustration of finding a neurologist you like and connect with. Unfortunately, the waiting lists are inevitable. Might you request being put on a waiting list? Or check in daily to remind them that you are very interested in being seen earlier? Sometimes chatting it up with a nurse and building a rapport helps lead the way and gets your name and situation on the forefront.

As for pain, I'm sorry you're in so much. Gabapentin is a work in progress and can continue to be increased based on results, but does take time and patience. I was in your position with neuropathy where nothing helped the pain. What I can tell you from experience is that nerve medication is an important line of defense but is not end all. Extra Strength Tylenol may be able to pitch in a bit but honestly, some of your key components to pain management are continuing to be physically active as best you can, emotional and behavioral therapies to help you deal with your new conflicted feeling during this process, sleep hygiene and healthy eating habits, etc. I hate to say your doctor was right, but with neuropathy, there is no magical medication and quick fix and that's a tough pill to swallow. No pun intended. I wish I had learned the importance of self-management tools sooner.

You've got a lot changing and going on...give yourself grace along the way. What types of distraction do you have that can help take your mind off of pain? Do you have any hobbies that you enjoy?

At 71, and in today's healthcare industry, (I call it an industry because that is what it has become) I am no stranger to waiting lists. I was on a waiting list to see the neurologist I have now and I literally called every other day to see if there had been any cancellations. It eventually paid off and shaved 20 days off of my wait time. Rest assured I will request to be put on a wait list every time. In fact, I'm on a wait list to see the nutritionist that I have an appt with in November. I don't bug them about cancellations too much, as he gives priority to cancer patients which I can understand.
By the way, and this is probably a stupid question, but have you looked at the website "The Patient Revolution"? It was recommended to me by @johnbishop, another of your volunteer mentors. I am so grateful to him for telling me about it. It's extraordinary.

Hi @dat. It does break my heart to read about folks like yourself having chronic pain and being at the end of the medical road. In other words, when treatments have been exhausted and it comes down to living with and accepting a chronic condition. It sucks actually and I live it right along with you and many others.

I brought up Central Sensitization Syndrome because it sounds like it may help give insight as to why your doctors can't figure out what more is wrong and why they bring up things like anxiety and such. It's just a thought. Here, you decide by watching this video on CSS:

What I don't understand about it is sometimes it goes away. It seems to come and go.

Could it be some deficiency problems you are facing perhaps, there are a lot of them/work with your doctors/alternative medicine practitioners- using fruits, vegetables, exercise, and sleep and see what happens/