Pain: How can I find the underlying cause?

@suzetteirons, You may also find the following discussion helpful -- Getting a Diagnosis for Chronic Pain: https://connect.mayoclinic.org/discussion/getting-a-diagnosis-for-chronic-pain/

I am sorry you have this pain. I think many of us on this site are dealing with chronic pain. It is very debilitating and tends to wear a person down. I hope you can find a dr to help you sort out what may be causing the pain.

Something I noticed in your note - one dr found Sjogren’s but another dismissed it. Sometimes Sjogrens antibodies are found and sometimes a person with sjogrens does not have those antibodies. So you could have it even though some of the blood markers aren’t present.

If that doctor put you on hydroxychloroquine (plaquenil) for Sjogrens it can take up to 6 months to a year to get the full benefit of the drug, as it slowly builds up in your system. A yearly optical exam to detect possible retinal involvement is imperative. Many of us stay on it for years with no bad side effects.

Another website similar to this one that use to get help from other patients is called smartpatients.com. You can ask questions and read or participate in conversations about various topics. It is very helpful.

The best sjogrens site was created by a doctor who also has Sjogrens.

I wish you luck in your search for a doctor. My first step upon finding out I had the antibodies that pointed to sjogrens was to find a rheumatologist.

@suzetteirons
I live in Georgia.. the SW corner in Albany. I am blessed to have a good pain specialist here. Sometimes he gets it wrong… trial and error. We are having one of those debates now. He thinks it is to do with muscle and I think it is a some type of neuralgia. We will see who is correct on this one. I think it is me 😁 We have been at this for 20+ years. So he knows me pretty well.

I am a patient at Mayo Clinic in Jacksonville.. for upper abdominal and esophagus. My driving trip is about 4 hours on a Sunday. We usually stay a week down there even if I have only 2-4 days with appointments.

You have been given excellent advice on keeping a journal. Write down what you can remember and continue daily. It will help in your diagnosis.

Medications can cause pain. .. be aware if it is a side effect. I have found that a pharmacist is better than most doctors on telling you how your medications interact with each other and when the best time of day is to take them. List your over the counter medications you take regularly. I made a table with columns of name of medication and strength, dosage and prescribing doctor. At the top of page I have my name, address and phone number. Below that In red I have typed and underlined the word Allergies and a list of them and the side effects.. hives, itching, headache, nausea… whatever it is that causes me not to tolerate it… one is depression and another is muscle aches. Next is the table of medications and over the counter medications I take regularly. I keep a copy on the hard drive of our computer and print several copies and carry one in my purse.. along with my list of surgeries… that is same form as medications, but the table contains the surgery, the date, the surgeon and hospital on surgery center. These can be easily edited on the computer when things change.. make sure you make a backup copy on a thumb drive or something else.

Before having an appointment with a doctor write down your questions on a piece of paper.. my husband (he is my bestie 😀) uses a spiral notebook to write the questions and answers in and other notes from the visit. I think it is important to have someone be with you at your appointments. Someone to take the notes and be another pair of ears and another voice. Have an outline of your journal.. symptoms.. when began.. doctors you have seen and medications you have tried that did and did not help. (that could be another table).

Pain has so many causes… and the problem can originate in a totally different place than the pain.

Wishing you the best.
ZeeGee

May want to view this You Tube presentation by Dr. Sletten Discussing Central Sensitization Syndrome (CSS). May help in understanding what may be your condition.

I had terrible burning pain in my legs, chronic fatigue, malaise and was just miserable. It took me two years to get diagnosed. A neurologist biopsied me for small fiber neuropathy and it came back positive. I take Gaberpentin, Mestiton, prescription ibuprofen and I have an expensive topical pain mixture made by a compound pharmacy that I use nightly. It has helped somewhat if I don’t overdo it. If I overdo it, it’s game I over as I am in terrible pain for days, barely functional.

@fourof5zs ZeeGee, since my husband is a kidney transplant recipient, and I have my own health issues, we each carry a printed copy of what the other person is taking for meds + significant surgeries, for a "just in case" scenario, and I have a hard copy in my purse. I use a MedicAlert bracelet, but he won't wear the one I got him ;((

@gingerw
Hi Ginger,
I think your hubby needs a good swift kick!
Do you think he'd wear the dog tag, sweatband, shoe tags or if he has an Apple watch they have various plates that go on the band. They used to have a USB device and a watch.
Do you know why he won't wear one. If he won't wear it for himself, he should wear it for you.
You might remind him “Happy wife happy life.”
Mine has saved my life several times. I was found a few times seizing (I was in Status) and had the people not called Medic Alert & 911 I'd have been a goner.
Here are few options other than bracelets & dog tags.

Take care kids
Jake

Hi @dianecostella. I'm glad your Dr. finally got to the bottom of your symptoms via a skin biopsy and diagnosed small fiber neuropathy. It sounds as though you're controlling discomforts pretty well with the exception of over doing it. I'm all too familiar with that! Here is a conversation you may be interested in about pacing energy and activity.

I hope it helps.

@jakedduck1 It was an effort to get him to wear his wedding ring. I bought him a set of silicone wedding rings when he said he had to be careful around machinery on his job. Now that he is retired, he told me he "was just never a jewelry person", and doesn't see the value in being prepared. It's a continuing work in progress for me.

Thank you for sharing your experiences with a medical alert situation. I know my own situation, I rely on them. Some people I know have an app on ther phone that lists things, but what if your phone is not with you? As @rosemarya has told us, EMTs are trained to look for the tag/bracelet/etc.
Ginger

Here is the video that Ken is referring to. Mayo Clinic's Christopher Sletten, Ph.D., ABPP discusses Central Sensitization Syndrome, which is the prevailing theory of the cause of chronic pain & other chronic symptoms.