Still No Answers..Is it Just Me?

I really understand how you feel. I’ve been frustrated since getting sick after chemotherapy in 2005. I started having excruciating pain within a month of completing all the chemo. The first diagnosis was fibromyalgia. I was awarded disability, I could not return to work as an RN.
Anyway, it’s been a very frustrating 20 years. I was eventually diagnosed with chemotherapy induced peripheral neuropathy. The pain has persisted and some symptoms have progressed.
However, I don’t know if all of the symptoms are related to the CIPN. I have been sent by my family doctor to many specialists. I don’t know if they truly communicate with each other. And I do wonder sometimes if they’re truly trying to get to the route of some things.
I wish you the best. I hope you find some help. Hang in there!!

@dp5wheels25, I'm sorry to hear that you feel communication has not been as you hoped with your care team. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d encourage you to share your experience with the Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu

Staff are available to discuss comments or concerns you may have regarding communication and coordination with local care. Your experience certainly sounds like something Mayo Clinic would want to act upon.

Your situation sounds scary. Sorry to hear you are suffering so much. One thing that occurs to me is that sometimes trying a med can help diagnose and name the problem. IMO the medical community has a lot of faith in tests to diagnose (so that meds can be found to address the problem.)

Some docs in my life have tried the other way around. These docs put me on a med even though « answers » were more like « possible answers » or « educated guesses » . That works sometimes imo. If the med works who cares if the condition has a well known name?

I've been through a similar experience. Eventually we got to the correct tests which revealed issues. I had a positive Rheumatoid Factor and ANA. My inflammation markers were all positive and I was hypothyroid. I also had Hashimoto's.
I would recommend beginning with a low inflammation diet or a FODMAP diet. This is one of the best things that my rheumatologist recommended. Many autoimmune diseases are triggered by, and made worse by, gut issues. The FODMAP diet helped me to identify triggers in my diet. The key is to only introduce one item at a time for 2 weeks. It's a slow process but worth it. It will help take the edge off the pain so you can function better. It won't fix it all but it's a great start to feeling better.
I do not think it's in your head. I believe that you have physical medical issues, but not knowing what it is causes anxiety. It's a normal response that everyone has to this type of situation. Unfortunately, medical doctors pick up on the anxiety and stop there. They run a bunch of general tests and if nothing shows up then they stop. You need more targeted testing but you've got to reduce your stress so you can outline the major issues for them. Having a therapist helped me immensely with this part. It's a safe place where you can discuss your issues and receive support. My therapist helped me to identify which issues were caused by stress and which were physical. I took this information to a medical doctor who was then able to quickly make a diagnosis. I found that, unfortunately, medical doctors become overwhelmed with a large list of symptoms. You have to narrow it down for them or they are unable to help. The therapist gets to the bottom of that and then you're left with what the medical doctor needs.
Sending hugs and support.

dp5wheels25, Praying for you right now. I personally would suggest taking all of your test results to an
Integrative Medicine doctor. They can "think outside the box" and see what there take is on this.

I was blessed in that my primary in 1996 diagnosed me with Fibromyalgia in 20 minutes. He also did
a sed rate to rule out Lupus, RA & MS. I hear horror stories of people with Fibro taking years to get
a diagnosis. I question if you have Fibro or an autoimmune disease. I also have Hashitmotos,
Subclinical Hyperthyroidism (Endocrinologist diagnosed this), bilateral osteoarthritis (Orthopedic doctor diagnosed this) & Long Covid (COVID Recovery Clinic diagnosed this). All of these can cause fatigue and pain.

Have you had COVID? Did your symptoms start happening after having COVID? COVID can do some crazy things to some people.....others sail right through it.

Bless you and keep us posted. Blessings & Prayers....

sounds a little like Polymyalgia Rheumatica. It is an autoimmune disease. You may or may not have an elevated sed rate and CRP. Sometimes HSCRP. Prednisone is the treatment. IL-6 or IL-2 might be issues. I saw a rheumatologist at Mayo. I found him to be very thorough. I do think Dr's are so specialized anymore than generally going to just a Dr is not going to get you the best care.

@dp5wheels25

Did you have any abnormalities show up in your bloodwork (anything outside reference ranges or close to the min/mac)?

Did they rule out:
-Infections (viral/Lyme disease/tuberculosis)
-Autoimmune Disorders (RA/lupus/Hashimoto's)
-Gout
-Fibromyalgia
-Medication/Allergic Reactions
-Metabolic Disorders (hyperthyroidism/vitamin D and calcium deficiency)
-Systemic Conditions (diabetes/kidney disease)

Did they do a spinal tap and bone scan?

You may want to see a hematologist/oncologist to review all bloodwork and determine the right specialist to follow-up with.

Did they rule out any potential genetic issue or cancer? Losing weight is concerning.

Thanks Colleen, I will definitely do that. I traditionally do not like to complain about anything and don't want to cause issues for the doctors involved as I know they are swamped. But I will share my experience in case it just helps overall process, etc... Thanks Again

Thanks Tuckerp your response means a lot. They say that they did rule out PMR but sometimes I wonder about that. The Rheumatologist there at Mayo finally determined that she didn't think (not 100%) that it was an autoimmune but couldn't be sure and then just left it there. My concern was a very low IgM and Free Light chain Immunoglobulin blood test on two different occasions. My research showed that this is a concerning thing that warrants a good deal of attention but I had to bring it up to the internal medicine doc and he finally set up an immunologist appt there at Mayo but I am electing to see someone local. Trying times for sure...appreciate your comments.

Thanks so much for your follow up it means a lot to me. Absolutely, I had a barrage of tests during my two visits and they ruled out quite a few things which I was grateful for. They just were not able to give me any answers at all and kind of left me hanging there. I did have two Immunoglobulin IgM tests that were very low and some free light chain tests that came back high. My research indicated these were results that I should be concerned about and needed some definite followup. My internal medicine doctor that at Mayo didnt really focus on this and I had to bring it up. He finally set up an immunology follow up at Mayo. I have decided to find someone local who can assist with this. Just concerning for sure. Thanks again for you comments.