At a loss, multiple consultations still no answer...any idea?

Hello @suzetteirons, welcome to Connect. I'm so glad you joined the conversation and am thrilled Dr. Sletten's presentation spoke to you. Light bulb moment, right?!

Do you care to share your health journey and how you currently manage your symptoms? Have you considered attending Mayo Clinic's Pain Rehab Center?

The only medication I'm taking is metoprolol and it's 25 mg in the morning and 25 mg in the evening.

I'm very hesitant on getting any pharmaceutical antidepressants or anxiety. I need to find out why I have all these persistent progressively getting worse neurological symptoms that have no rhyme no reason and have no trigger for them just occurring out of the blue everyday.

The doctor never prescribed any nerve medication for everything including my muscle twitches throughout my body He just said it's benign fasciculation syndrome and I need to go get a hobby or go do yoga or go learn meditation etc but he said it's benign and I just need to learn to live with all the muscle twitching so I have no medicine for that either.

Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.

i'm very relieved to hear your doctors haven't been pushing meds because that in itself can be the cause of many "extras". And kudos to you for not wanting to be on them.. Your doctor's holistic approach is a smart one although having been there, I understand completely how sucky that feels when you have discomforts and symptoms and just want help.

As hard as this is to hear...once you navigate testing and results...it may come down to chronic conditions and understanding how to gain acceptance and learn how to manage for a better path forward. Central Sensitization Syndrome really seems to line up with all you describe.

The confusion, anxiety and frustration is actually fueling your fire. What do you do to calm yourself?

In pain rehab, I learned the 5 P's:

Pause
Process
Perspective
Patience
Plan

100% true, you came to right place. I'm sorry to hear you experience pain through your body. I do too, and it wasn't until I Dr. hopped, had extensive testing, took multiple drugs, and drove myself a little crazy that I realized what I was living with were chronic conditions. This in turn messed with my psychological state and brought depression, anxiety, etc... which entices symptoms and round and round we go. All of this became overwhelming until I learned how to manage, accept and plan my course of action. Putting yourself in control instead of Drs is empowering.

How are you currently managing inflammation? Are you eating a healthy diet to help reduce inflammation? How are you managing your mental state? Are you giving yourself grace?

When am in pain am so depressed and fed of of all the pains, I try to change my diet but it’s a struggle when u love the things that are bad for you like sweets but am making progress with changing the way I eat what I eat and drink. I take pain killers when the pain is getting too much for me but I try to bear it most times because I don’t want to get too dependent on pain killers.

Hello! This really is an amazing community for people who have other than the most routine symptoms!
For a long time, I, too have been going the route of being told "you're fine, you have anxiety, you need to do X, blah blah blah". This while knowing something was wrong. I, too, have an implanted loop recorder. And I have begun to feel kind of crazy when I see this list!
Turned out to be several things, long undiagnosed celiac disease, pernicious anemia, UCTD, AFib, labile hypertension, neuropathy, cutaneous Lupus, on and on, most recently Pure vasovagal response as the result of a Tilt Table Test.
That is a dysautonomia!
There's a drug to raise blood pressure! I am not starting it unless things get way worse! Too many pills already! The side effects of one creates the" need" for another ad nauseam.
(Note: I am investigating Hawthorn berry for AFib, my sister told me about it.)
And the rest of it? The symptoms?
For now, I am going to live with it. I am blessed not to have severe problems, just a lot of them, and, at the moment, grateful to have a diagnosis of dysautonomia explaining SO much?
I wish you all the best health-wise and that you find peace!

i'm very relieved to hear your doctors haven't been pushing meds because that in itself can be the cause of many "extras". And kudos to you for not wanting to be on them.. Your doctor's holistic approach is a smart one although having been there, I understand completely how sucky that feels when you have discomforts and symptoms and just want help.

As hard as this is to hear...once you navigate testing and results...it may come down to chronic conditions and understanding how to gain acceptance and learn how to manage for a better path forward. Central Sensitization Syndrome really seems to line up with all you describe.

The confusion, anxiety and frustration is actually fueling your fire. What do you do to calm yourself?

In pain rehab, I learned the 5 P's:

Pause
Process
Perspective
Patience
Plan

I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.

This is great news! I'll keep my fingers crossed. Definitely Dr. referrals to Mayo Clinic are helpful. Keep us posted.