Frustrating To Have Symptoms Without A Diagnosis

Hi,

I was reading you digest posting and felt compelled to write you. I have what my doctors tell me is “nonspecific auto immune disease” and I feel your pain, for lack of a more sophisticated way to say it. I have had this diagnosis for YEARS and none of my 10 specialists have the conviction or confidence in their knowledge and skill to do anything for me. My rheumatologist told to do the dishes in hot water when my pain is extreme. What? This is a program director at an IVY LEAGUE medical school. Really? The dishes? ‘Thank you doctor for your expertise and I shall instruct my insurance company to compensate you for your impeccable advice. ‘

It is true that we all have many things to be grateful for, and myself included, even as I see and feel and live each day with my body deteriorating before me.

Have you had any genetic testing? I have and I was very pleased with the results. They tell me that I have Ehlers-Danlos syndrome, which nowadays equates to telling people you have fibromyalgia 15 years ago. Doctors don’t take it seriously but if you look it up I hope you will see The connection between your symptoms and the symptoms associated with EDS as I did. I know we are all different but learning I had EDS did give me some peace after more than 20 years of trying to figure out what was wrong with me.

However, that being said, so does the same issue arise with doctors not willing to commit themselves to doing anything to help patients like myself and you. Wash your hands in hot water, take Tylenol, try this low dose medicine …try that one too, and go to the emergency room if it gets worse.

So yes count your blessings, but don’t give up on being your own advocate. I joined these boards simply because I needed someone to share my story with me and keep advocating for myself and others.

Your sister in pain,

🌻

@SusanEllen66 & @debsohn
For many years, I was in pain with random diagnoses, and thought there was nothing to do about it. I had several joint replacements & surgeries due to severe osteoarthritis, but every time one joint was fixed, another flared.

I also had chronic lung issues, though most tests were "within normal range." Once my lung condition was diagnosed, and I was put on a horrid regimen of 3 antibiotics for 18 months, my pain worsened, I lost weight, lived with severe fatigue & nausea - basically had no life.

Thanks to the information and encouragement I received from the MAC (infection) group on Connect, I decided "Enough! It's time to take control!" With the support of my ID doc and the group, I stopped the antibiotics, but I still had pain & fatigue. I had a long talk with my PCP of 25 years, and she said it was time to pursue another path. She referred my to the Pain Management Team in our large clinical practice, and my life began to change.

The pain management doctor explained about chronic pain & the brain. She explained the diagnosis was immaterial if there is no absolute cure for the disease or condition. We had to teach my body to "see" and manage the pain differently. This led to training in how to handle the pain through meditation, visualization, physical therapy, diet, exercise, activity management and a very small amount of non-pain medication that helped my brain adapt.

That was 2 years ago. Life is not perfect today. Pain, fatigue & lung issues still interrupt my life at times. I still cannot do everything I used to do, but a LOT more than I could 2 years ago. When I get into a pain cycle I cannot break alone, I double down on using my tools. Or I return to my special PT for help (we call it a tune up.)

Have you ever thought about ignoring the fact that there is not a specific diagnosis, and and treating the chronic pain as an ailment all its own? Mayo Clinic offers a comprehensive Pain Rehab Clinics -
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691in patient, out patient & on line.
There are other in patient & out patient clinics around the country as well. These are not "pain doctors" whose goal is to prescribe medications.

Are you interested in an option like this?
Sue

Sue
Thank you for the information on pain management. I am definitely going to go to the site for comprehensive pain Management.

I decided to become active here of the Mayo discussion boards to see what help was available through Mayo. A couple weeks ago my sister-in-law said to me “what would you do if you could do anything to take care of your pain?” I told her “I would go to mayo clinic.” And here, in my first post, I found someone like you who can direct me towards my first step.

I do receive pain management through Boston‘s Mass General Hospital and I have had 17 surgeries myself for osteoarthritis, scoliosis and a very severe case of osteoporosis which has simply just fractures my bones. I have tried everything from diet to yoga to PT to exercise to therapy to steroids to epidurals to acupuncture and to talk about Spinal Cord Stimulator. I can honestly say that none of it works for me long term. I’m on a very low dose of tramadol mostly because I have over the years I have had to accept pain as my baseline.

Hearing more about your story has been so helpful.
Thank you again.

Debra

Thanks so much for your response!
Giant Cell Arteritis is treatable with a drug when you have a diagnosis. Without treatment, the worst thing that can happen is unilateral blindness. I’ve already lost the vision in my left eye temporarily 3 times over the last 2 months.
The pain comes from headaches, jaw pain, and I get pain around my left eye.
This disease is the result of inflammation of the temporal artery. I have every symptom. However, my body hides it from modern technology 🤨 therefore my frustration.
My local rheumatologist is trying to figure out how to treat me. Hopefully, she will get me off the prednisone and on the medication I really need soon. The Mayo Clinic rheumatologist sent me packing because of the tests. He wasn’t willing to help figure out what he might be able to do for me.
Thanks again!

I have the opposite problem. My blood panel shows that I have an autoimmune disease. I have no symptoms. Was referred to rheumatologist. He repeated the blood test along with a urine test. Same result. Still no diagnosis. In this era of Covid and other diseases. what am I to do? Must I hide out in my house for the rest of my life so I don't "catch" anything? No doctor seems to be concerned.

Isn’t life grand!
No, hiding out isn’t necessary. If you are not experiencing any problems in your body what can be done?
The only way to treat inflammation is by taking prednisone, and that is awful stuff!
Frustration all around.
Blessings 🌻

Hi, @SusanEllen66
I wish I could offer you a solution but I have none. All I can offer is empathy.
I had a problem that went undiagnosed for about 15 months and it was so frustrating. When I finally did get a diagnosis it was such a relief, even though the diagnosis was not a good one.

If you had only seen a local doctor I would suggest going to a doctor at a major medical center but you have been to Mayo. I think I would still try a different major medical center though. Sometimes a doctor just sees something that another has missed. I don't go to Mayo, I live an hour north of Boston so I go to Mass General. Even so, I think the gastroenterologist I have seen there most recently is off track and I will probably get another opinion from a different Boston hospital. It can't hurt and it could possibly help.
JK

I have a possible diagnosis! I went for a follow up appointment with my neurologist today. My doctor’s PA listened to my recent story and he diagnosed me as having migraine with aura. He said my vision loss was the aura…
I got a shot, as a trial sample of a medication that prevents migraines for a month. Hopefully, this is the answer!
I’m feeling very hopeful!

@SusanEllen66 I really hope it works for you! I'll be looking forward to hearing from you that the doctor was right.
Ginger

Hi, I am new to this site and was intrigued to see that others have suffered through the stress of no diagnosis. Yes, I believe it is a real stress in itself. Although I am a recently retired RN, I now see my doctors visits as rather pointless as although my symptoms worsen, there does not seem to be a definite diagnosis and I am beginning to feel as though I should not be "bothering" a busy medical professional. As a 2 time cancer survivor, I don't immediately think that it has returned when I am in pain and suffering, but I do know myself well enough to know that something is wrong. And how do I begin to treat the problem if I do not know what the problem is? Assertiveness is not my strong point.....and suggestions?