Hi, I can’t help but reach out and lend some encouragement and advice. Don’t give up on yourself, even if others do! Family doctors aren’t equipped to deal with patients like us— they have revolving door practices which succeed when they see more patients. This means they have less time to carefully examine your chart or do research about your condition. 1. You MUST be your own advocate! You need a specialist; preferably one at a major university. These doctors are teachers and they want to learn more, be on the cutting edge to advance medical science. 2. Educate yourself. You will have to do lots of googling and research, but the more you know about your condition, the more help you can lend your medical team. (You should have a team.) Look for clinical trials on sites like pubmed.gov or rare disease databases. Use your symptoms as a guide to find possible treatments based on studies for medical journals. This is how I was able to assist my doctor in securing Gammaplex infusions to treat my CIPRN. 3. Knowing your family history is important. No information is irrelevant. Did anyone in your family have autoimmune dysfunctions, like hands gnarled by arthritis, or skin conditions like psoriasis? If your symptoms are “idiopathic,” that just means you haven’t traced the smoke back to the gun yet. If nothing in your lifestyle is a contributing factor, ask to have enzyme tests and RA factor tests done to determine if your body is attacking itself. Immunosuppressive therapies could make a world of difference if you have autoimmune conditions. 4. Facilitate communication between your doctors. The more they know about the findings of other doctors, the closer you come to getting some answers, which hopefully leads to a higher quality of life through proper diagnosis and treatment. 5. Feed your body. If you have nerve problems, take Alpha Lipoic Acid and a good B-Complex, Omega 3,6,9, Fish Oil, Magnesium, and D3. Take magnesium at night before bed because it helps with inflammation. Inflammation sets in over night, which is why mornings can be so difficult. One of the best ways to absorb magnesium is by taking Dead Sea Epsom Salt baths. 6. I can’t stress this enough: BE CAREFUL WITH ELECTROSTIMULATION THERAPIES. Think of your nervous system as a motherboard with circuits. The synapses fire from one to the next, and they’re all connected. If one fuse is damaged, you may add insult to injury when you start introducing foreign signals. For example, I received PTNS (subcutaneous tibial nerve stimulation) treatments as a therapy to relieve an overactive bladder. A tiny needle is inserted into the heel, connected to electric current. A signal from your ankle tells your bladder to calm down! While this was an effective treatment, medical assistants, not doctors, administered the treatment. They wouldn’t/didn’t have the necessary bells and whistles going off when I was able to withstand the highest setting, which would indicate damaged nerves to a more well trained eye. If your nerves are already brittle, like mine were before I was aware of my Small Fiber Neuropathy, there can be unanticipated consequences. I didn’t have neuropathy before receiving this treatment. That’s not to imply this CAUSED any damage, but it likely added insult to injury. With independent research I learned that there’s no reliable long-term data to support the long-term mitigation of OAB because the demographic for PTNS treatment is elderly. They either quit or die before any consistent data could be recorded.
It can be easy to become discouraged by treatment fatigue. We don’t want our illnesses to define us, but the self discovery required to find a path to recovery can be a full-time job with little to no coworkers. It can feel really lonely. The temptation to do nothing and live one day at a time is understandable, but dangerous. If an illness is progressive, there are still ways to slow or stop the progression. A body (and mind) in motion stays in motion. I hope you’ll join me in the idea that working toward strengthening the body rather than passively accepting its limitations, is the most important mindset we can adopt so we can sustain and improve our quality of life and help others do the same by watching our positive initiative. 😊 Hang in there!