Dismissing doctors: How do you find a doctor who can help?

Good evening @mahenoor108 and welcome to Connect. Yes, someone can help you, and more about that later.
I notice that you gave the title of this discussion "Dismissing Doctors". Would you please tell me what that means to you? Have you had issues with the care you are receiving from your doctors? How are you enjoying motherhood? Is that a balancing positive to your own body's pain?

When you say that most days you cannot function........does that mean that you are unable to care for your busy 4-year-old? Do you have a family that can help you? How about a friend or two? I am concerned about both of you.

Please tell me an example of the type of symptom that appears every other month? At your age......I too would be worried and looking for someone to help me. And frankly, I don't know how to help you with everything you have mentioned. What I do know something about is tight muscles, in part because I have had 14 orthopedic surgeries and tight muscles can come with the recovery. Sometimes your muscles are tight because the fascia that holds them together becomes restricted. There is a type of body therapy called Myofascial Release Therapy, and that can make your muscles much less painful.

On Connect, there are mentors who help members share their experiences and learn from each other. There is one mentor I would like to suggest that you meet. Her name is @rwinney or just Rachel. If I didn't know better, I would almost think that Rachel could have written your introductory post. She suffered for years from one symptom after another. She was angry, disappointed, and desperate. After trying every possible medication and treatment she was finally diagnosed with CSS......meaning that there were many different symptoms throughout her body and new ones kept on coming.

Hopefully, Rachel will have some time in the next day or so to say hello and get to know you.
Before I say goodnight, I would like to ask you to do just one thing for me........give yourself acceptance and love. Pat yourself on the back. Until I learned to advocate for myself, I was just frustrated, disappointed, and desperate because I was diagnosed with SFN, small fiber neuropathy, and headed for a life of pain and increasing helplessness.

Where would you like to start..........what is your most bothersome symptom?

May you be free, safe, and protected from inner and outer harm.
Chris

Hello, @artscaping thank you so much for the reply! I have been to over 16 doctors in the past 2 years
Some say I have fibromyalgia some say we don’t know what you have some think it’s an autoimmune. I have been on different medications of fibro but they don’t help. I have tried swimming, yoga everything I have been recommended, changed my diet but I’m still in pain. Yes sometimes the pain becomes less but most of the time the pain is at a 7. I give time to my son as I don’t want to neglect him and let my illness win. My only complain with the doctors is that why don’t they test me for everything possible which could be causing these symptoms. I have started to get bald patches on my scalp with horrible dermatitis it’s been 1 year now and it’s not going away.
My main problem is pain in my thighs, upper arms, neck, shoulders and my face- cheeks.
I don’t know what it is I have and how I will ever get diagnosed properly.

Hello, @mahenoor108, I'm Rachel, it's nice to meet you. I'm thankful that Chris @artscaping brought your post to my attention. She is certainly right, you mirror a very similar journey to mine. Reading your posts make me sad because I understand your confusion, frustration and anguish, and am sorry you are dealing with it all, especially having a small child.

Being faced with the fear of not knowing why our bodies act out with symptoms that we cant explain, exacerbates more symptoms, so on and so forth. You are a perfect example of how this cyclone happens and affects your entire life, it's called the cycle of pain. My cycle of pain was caused by Central Sensitization Syndrome (CSS) which is an upregulation of the central nervous system and peripheral sensory input. This video will explain more:

Why do you think your doctors won't test you for everything possible? What reason have they given you for not pursuing more testing? Have you had full blood panels drawn? Do you exhibit signs of any autoimmune diseases that match up to your widespread symptoms?

I went down this same path and believe me, I wanted answers, I wanted to find cause for all of my snowballing symptoms, make sense of it and fix it, but that took time. What are your next steps in being your own advocate? Do you have a support system?

What type of doctor(s) are you seeing?

How high is your ANA? ANA's that are low positive don't always mean an autoimmune disorder, and ANA can be elevated by infections.

Have you had a Lyme test? It needs to be Western Blot, not Elisa- you can ask for it. Quest testing is good. Doctors read them differently so I would make sure a functional doctor or doctor knowledgeable on Lyme interprets the tests.

I can relate to your journey but I stay aware that the need for a diagnosis is insurance-driven, and medicine is evidence-based unfortunately. My ANA was 1:5000 (approx.) at one point. My neurologist describes CSS but never uses the label. My rheumatologist diagnosed me with lupus but skin biopsy said dermatomyositis. Then said I was "MS-y." Then eye doc said he thought I had MS. I also had a positive Lyme test at one point. Honestly, I don't even care because unless my symptoms are life-threatening, I am not taking immune suppressants. I took antibiotics for a long time- big mistake. I took Plaquenil for a long time- until I got flashing lights peripherally.

The best approach seems to be a team with physiatrist, PT, OT and psychologist, offered at some rehabs and pain management clinics. I have found tai chi to be extremely helpful. I start a class with my body covered with pin pricks of pain all over, numbness and tingling, and can actually feel the sensations recede. I also get muscle contractures: my tai chi teacher can actually see them. My left arm becomes inches shorter than my right. Someone taught me where to press to release.

Functional medicine doctors are really good with these kinds of chronic mysterious issues. I understand the need for a diagnosis in order to be taken seriously. It should not be that way, but that is how doctors are trained: almost like recipes rather than a more dynamic way to think about the body. Of course there are great doctors who transcend that: the trick is to find them!

I am so sorry you are going through this rough time. I do not understand myself why doctors say different things, almost always. I think going to Mayo Clinic, Cleveland Clinc or John Hopkins may be a must.

I watched the video and it resonated with me. Can I ask - do all 3 Mayo campuses offer this therapy and how do you find a program or doctor who specializes in this?

Hi @carolasc Yes, all 3 Mayo Clinic campuses offer the pain rehabilitation program. It's called the Pain Rehabilitation Center (PRC). I'm unaware of other specific programs beyond Mayo that offer this specific type of program, however I have heard there are a few. Unfortunately, finding this comprehensive approach to chronic pain and symptoms is unique and many doctors are unaware of central sensitization let alone how to treat it.

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Do you believe you have Central Sensitization Syndrome (CSS)? Do you mind sharing your symptoms and past approach pain management? Are treatments no longer helping you?

I go to Cleveland Clinic and have experienced doctors having differing opinions but they explain their rationale. They usually are in agreement but might have different philosophies about risk/reward balance. I tend to be more conservative as to risk (it being my body that deals with unintended consequences!) so appreciate their explanations. Even good doctors can disagree. My idea of a bad doctor is one who doesn't like being questioned or working as a team. (Because it's my body that deals with the consequences. A refrain that I keep uppermost in my head when making medical treatment decisions. I hope to never be eligible for participation in some malpractice or drug-maker lawsuit.)

@windyshores @mahenoor108 I wanted to share some testing information for Lyme Disease. The Western Blot test isn't very accurate and can give a false negative missing a Lyme diagnosis.

Here are a few links to information about Lyme.
The doctors who are the experts at treating Lyme are in the ILADS group. The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
Here are many patient success stories.
https://igenex.com/igenex-success-stories/
It seems that symptoms could be so many different things. Windyshores, You're right in that a patient needs to be in front of a doctor who understands these issues. One suggestion would be to contact the testing labs, and ask for names of doctors who are sending in tests or in the case of Lyme, contacting the ILADS group may help find a Lyme expert.

Mahenoor, when I read your description of stiff rigid muscles, it reminded me of a dog I had who did get Lyme disease. He became stiff and kind of spastic. The problem with Lyme disease is it mimics so many other diseases, and it is not just one infection, but a group of infections they call co-infections, and each would be treated with different antibiotics. The Lyme treatment Guide link explains a lot of it. Lyme can be cured with long term diligence with a specialist. It may be worth looking into this in case you find a diagnosis and possible cure; otherwise, it could be ruled out.

These symptoms could also mean different things to different patients depending on their personal experience. It does help to learn from other patient's experiences. Doctors are like detectives, and their opinions are also influenced by their own specialty and what they looking for, and they do try to rule out some possible reasons for symptoms. A different doctor may look for something else. Have you spent time outdoors where you could have been exposed to ticks in tall grass, brush or wooded areas?