Tired of the gaslighting

Welcome @cwitton1, You are not alone when it comes to your feelings. I have been fortunate that most of my primary care doctors have listened to me. I have several autoimmune conditions but I don't have the chronic pain that you experience. What gives me hope is a new breed of doctors that are listening to their patients. I have experienced this both in my local Mayo family health clinic and when referred to specialists at Rochester Mayo Clinic when it's out of their expertise. My primary care docs change pretty much every two years at the local health clinic and I have had a few that were not very good with their listening skills. One thing that has helped me immensely is a new website started by Dr. Victor Montori and his associates. The website gave me some helpful suggestions on planning my conversation with the doctors which I think has improved my communications with my doctors, as well as helping them listen a little better.

The Patient Revolution: https://www.patientrevolution.org/tools

What is great about Connect is being able to share experiences and learn from others what has helped them. You might find the Autoimmune Diseases Support Group helpful. Here's a link to the list of discussions: https://connect.mayoclinic.org/group/autoimmune-diseases/.

Do you mind sharing what condition or symptoms cause you the most pain?

Hey John. Thanks for the welcome. I’ve been to Mayo three separate times and each time they’ve let me down. You get to a point when you have to walk away to save your mental health. I have a myriad of painful conditions- from lupus to migraines to arthritis to Sjogrens. I don’t like to include fibromyalgia in there because there are still people who believe fibromyalgia is not real and when you mention it you can see the eye rolls and disassociation. I have spinal stenosis, multiple bulging discs, scoliosis, trochanteric bursitis, sciatica. I could go on but you get the gist. I am a member of the chronic pain and autoimmune discussions. I just thought this vent would be more appropriate here since it encompasses a lot of symptoms.

Ope. Forgot to mention the dysautonomia. Syncope, inappropriate sinus tachycardia, orthostatic hypotension. Mayos solution was to drink more water 🤣

@cwitton1, I'm sorry to hear that you've been shunted from specialist to specialist without solutions. I've added your discussion to the Automimmune Diseases Support Group and the Chronic Pain Support Group as well.

You certainly got a lot going on. I wonder if while at Mayo Clinic you were referred to either the:
- Fibromyalgia and Chronic Fatigue Clinic https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870
or the
- Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

If not, I can connect you with graduates from these programs who have found them to be very helpful, especially when dealing with multiple conditions and unresolved pain.

I don’t think anyone at Mayo understands the costs of doing a week or more in a program. Travel, food, gas, lodging, missed work- not to mention the mental burden and emotional toll being at the “world renowned” Mayo Clinic desperate for answers and treatment only to walk away with nothing. I could list every modality I have tried to get this pain to release its death grip, but I don’t think there are enough characters. Believe me, I am mindful. Thanks for the reply.

Hey there, @cwitton1. I'm with you and believe 100% wholeheartedly that your pain exists. I believe what you feel and how entirely frustrated you are with your circumstances and the cards you've been dealt. And, I believe you are exhausted, drained and in physical and emotional distress as a whole. What I don't believe however is that you are a quitter. Yes, I believe you want to quit, I believe you feel hopeless and at the end of your rope for the umpteenth thousandth time, BUT I believe that you've got moxie and the tenacity to look deeper into how might you be your best self-advocate.

You say, "No more visits. No more medications." Pulling back, honestly, may not be such a bad thing, providing certain meds and visits aren't medically necessary. I understand and felt the same way after realizing my reliance on doctors to intervene and find ways of helping my chronic pain and all that spiraled from it was just making symptoms worse. Once I began the healing process of grief and loss, and worked on acceptance of chronic pain conditions, I was able to see that it was more my responsibility of learning lifestyle changes which included stress-management, physical conditioning, behavioral and emotional therapies and how to be an active participant in my own pain-management plan. I want hope for you because I remember how bad it sucked to not feel hopeful.

What are your thoughts? Am I off the mark? Do you still feel there are stones left unturned medically, as in acute issues that are being overlooked, or chronic issues that you believe have been misdiagnosed? What do you think still needs to be done to improve your quality of life?

The sad reality is that even the best doctors in the world may not be able to reinvent the wheel and help us any more than their specialty lane allows. Process of elimination, try this med, that procedure or treatment. I agree with some of your points and held my own resentment and disappointment for a while based on failed treatments and ineffective meds, even for Mayo denying me to be evaluated. Rejection is disheartening and lonely. Some doctors lack of bedside manor and don't go the extra mile for their patients, but there are those that do. Here's one doc that I think is exceptional - Mayo's Dr. Sletten. His video on chronic pain may be worth a watch. I'm hoping that you find some validation.

Dr. Christopher Sletten - Central Sensitization Syndrome -

Finding Connect to vent your innermost frustrations and get it off your chest, hopefully proved therapeutic. We all need to do that once in a while. I read that you are only 50, work and have a hubby and kids! All wonderful reasons to keep hope alive and not give up despite your obstacles. Connect is here to support, encourage, share and problem-solve together. Hoping tomorrow is a better day for you. Will you get back to me with thoughts on the video or what you see your next steps to be?

Hi, Rachel. Thanks for the reply. To answer your questions, yes I do think there are stones left unturned. The current issue I’m dealing with is acute, but there are a lot of chronic issues I have been living with for a very long time. While I realize you are trying to be helpful (and I appreciate that), I don’t have an answer to what can be done to improve my quality of life. I have been trying to better myself, work on acceptance, focus on something else and the conclusion I have reached is in my first post. I am on certain medications that I cannot stop and I do see the benefit of those. I have recently stopped other medications where perhaps the bad began to outweigh the good. I am in therapy. Right now, I need to be done with doctor appointments. I did watch the video you posted. My honest opinion is while what he is saying makes sense, I did not find it helpful because in the end, there is nothing you can do to change a system that is overreacting to stimuli. (If that is what is going on with me.) He basically explained how the nervous system works, which I am familiar with, and said they teach you emotionally, physically, mentally how to deal with that, but there is no cure; there is no cause you can pinpoint. I feel like I am rambling now, but thanks for your reply and have a good weekend.

I can totally relate with where you are right now! Everything you said I have experienced, too. You are right, you are your best advocate and know your body best. I, too, have gone to doctors for many years trying to get help for my pain and declining health. They tell you, especially women, that it is in your head so they can just prescribe you anxiety/depression medication and send you away. I have also seen after care notes that document things were reviewed and discussed with me when they weren’t at all! Fraudulent record keeping! I have fired a couple doctors who would not help or listen to my symptoms or who put in my record “hypochondriasis” when all I wanted was answers and help to feel better. I do feel better now, not 100%, but better after 7 years of seeking answers and not settling until I got help. It is a lot of work, $$$, and time but it is our lives on the line. After all of the runaround, I was finally diagnosed by different doctors) with the following (in order): iron deficiency, small fiber neuropathy through punch biopsy, hearing loss, cervical and lumbar severe spinal stenosis, degenerative disc disease, radiculopathy, osteoarthritis, alopecia areata, thyroid autoantibodies in bloodwork and inflammation, cervical spondylitic myelopathy (spinal cord compression making it hard to walk and not drop things plus had daily headaches), thyroid nodule/Hashimoto's thyroiditis/micro cancer/hypothyroid, breast implant illness (implants removed), and gastritis and esophagitis (waiting for endoscopy biopsy results). I, too, had a really bad case of mononucleosis as a teen (now in my 50s) and understand EBV and other viruses can cause many health problems later in life. I am now on 100 mcg levothyroxine for my thyroid, 40 mg Fluoxetine (Prozac) for anxiety/depression (chronic pain), and now 20 mg Omeprazole for gastritis. Many other symptoms on my long list have reduced or gone away completely. There is hope!

P. S. You are right about NSAIDs not really helping with all types of pain. I took so much of it for severe period pain, headaches, and back pain but now have gastritis from taking too much for too long. This can put you at a higher risk of stomach cancer. My recent endoscopy at the end of December was due to newer stomach pain when I wake up in the morning. The biopsies will check for h pylori bacteria and irregular cells to see if further treatment is needed. Doctors don’t really do a good job of helping patients manage pain and warn about the risks of taking too much over the counter pain relievers. I know I took too much because I was not getting help from my doctors and trying to function in life as a single parent. It is really hard to work or do much if you are in constant pain everyday. I now get lumbar spinal injections to help manage my pain and delay the need for surgery to fuse my lumbar L3L4L5S1 together(they want to wait until I am older since it will restrict my movement).

cwitton1, I was wondering if you have tried an Integrative Medicine doctor? It is expensive, but, I got some answers last year as to why my upper respiratory issues (sinus infections, asthmatic bronchitis, pneumonia) are reocurring & linger so long. I have gene mutation issues and I do not detox. My doctor listened and is trying to build up my immune system and helping my body to absorb folates. It's a long process, but, I finally have an answer and hopefully this will resolve my weakened immune system. I'm so sorry as you have a lot going on and it is frustrating and discouraging. I had to go to a few Dermatologists & ENT doctors before I found wonderful ones. Please don't give up. There is help out there for you somewhere. Praying for you. I care.