Seeking help, information, support...

@artscaping,

Thank you for the reply. There are times when I still get worried/anxious when I get the sensations in my feet, but it's no where near as bad as it was, say, even two weeks ago. I imagine going back on Prozac and seeing the therapist have helped. Thankfully, my appetite is back and I am sleeping a bit better. I do have Xanax to help with sleep, but try to avoid it. It only lasts a few hours and, as I've mentioned before, my doctor said that is not a long-term solution.

The sensations are intermittent and sometimes do not happen for a few hours. The pain hasn't changed for the most part. I am very thankful to be able to sleep at night. Yes, I do worry it might get worse, but it doesn't consume me as it did not too long ago. Lately, I've been able to avoid excessive worry causing knots in my stomach, loss of appetite, lost sleep, occasional dry heaves and crying fits. I was a mess.

I've done all kinds of reading online about neuropathy and the different treatments. There is SOOOOOOO much information to consume. It's not easy trying to figure out what would work for an individual. Frankly, I wouldn't want my first choice to be an anti-seizure med like Gabapentin if the pain gets worse. I'd ask my neuro what other avenues we could explore.

I've seen the Youtube videos of chiropractors that claim to have a great success rate with treating neuropathy. I saw one video from a doctor in Wisconsin touting how effective stem cell treatment can be. However, I try to keep my faith in the doctors at the Cleveland Clinic. Will I end up having to go to Mayo or another facility out of state? Who knows?

There are more tests to run which, of course, means being patient as the doctor(s) try (tries) to figure out what's wrong. I try to focus on other things. Yes, I worry that I'll get a pins/needles feeling, numbness, or other symptoms and, if that happens, that it might spread. Just trying to stay positive because what we believe/think in our minds has a great impact on us.

You did mention falling, and you might want to consider a physical therapy evaluation to see if anything is out of place in your body that might be contributing to your pain. Does your doctor think that your medications could have any side effects contributing to your symptoms? From my own personal experience, the best way for me to confront fear was to embrace it and learn why I was afraid. You are doing the right things to be thorough in your quest. We can't control what we don't understand, and education goes a long way toward calming fear of the unknown. Understand that it's a journey, and even baby steps are progress toward your goal. Keeping a journal would help your doctors understand how your symptoms change over time and if they are related to any of your activities. As humans, we are wired so that stressful things get our attention first, and just realizing this can help you let go of it. Fear also increases pain. Mayo has 2 great books (which I bought for myself) by Dr. Soot that might help, and I found them fascinating. The "Mayo Clinic Guide to Stress Free Living", and the "Mayo Clinic Handbook for Happiness." I had worked out my own personal routines to confront my own fears, and reading these books explained why that worked for me. I was a surgical patient and I learned how to calmly accept what I needed to do to help my doctors help me. I hope this helps you in your journey.

Hello @jenniferhunter, I would like to Welcome you to Connect and thank you for sharing what works for you. This is what is great about Connect. I also found Dr. Amit Sood's website really helpful. He has a lot of helpful videos that explain how our brain deals with emotions and stress.

-- https://www.resilientoption.com/

John

@jenniferhunter

Thank you for taking the time to reply. I don't think any of my meds are causing the symptoms. At the time the sensations started I was taking 50mg of atenolol twice a day and 4,000 units of Vitamin D. I've gone back on Prozac since then to help with the worry/anxiety.

You mentioned that education goes a long way toward calming fear of the unknown. As I've mentioned previously, I did a lot of reading online about neuropathy and diabetes to my detriment. I had a fasting blood glucose AND A1c tests done. However, I then read online that those two tests can be normal and that an oral glucose tolerance test could, in fact, show a person has pre-diabetes or diabetes. I expressed my concerns to the neuro about it and, at this time, he does not see enough information to be concerned about diabetes. This was an example of how I went overboard with this whole thing resulting in more anxiety.

When the sensations come I feel the anxiety build and try to keep it at bay. I have no interest in going back to the way things were. Thank you for mentioning the books as well.

I do pray read the Bible for help/encouragement. I'm not trying to starting a debate about Christianity or religion, but simply wanted to mention it.

Thanks for your reply. You're right not to diagnose yourself from information on the internet and it's easy to assume the worse and escalate something into fear. I've done that before too. Education guided by your doctors is what I advocate for. I do have an advantage with that in that I have a biology degree and I can understand medical literature and studies that I've read. I started with looking up things that were on my medical reports. I have had a few circumstances where doctors missed my correct diagnosis, and I was able to figure things out long before they did, but I went for other opinions until a doctor got it right. Giving the doctor the right information and correct symptoms sure helps along with asking the right questions. That being said, make sure questions are questions about your symptoms. You can say you suspect you have whatever, but that is your doctor's job to make the diagnosis. I have also gained knowledge working in a research lab for a neuro-anatomist and through my own experience both as a patient and in my college lab experiences.

Thanks, John. I didn't know about Dr. Soot's website. I like the short informative videos that make you re-think your approach.

@jenniferhunter

That is some very helpful knowledge and experience to have. While I don't have that level of experience, my father-in-law (pathologist), sister-in-law (pediatrician), and brother-in-law (OB) are all doctors. The interesting thing is the pediatrician is married to the OB and they're expecting their first child later this year!

You made a very good point in that it's the doctor's job to make the diagnosis. I've driven myself crazy with making my own. I just try to stay in a positive state of mind and not pay too much attention to what's going on with my feet.

I was diagnosed with Hereditary Inflammatory Neuropathy, which is a type of peripheral neuropathy. Took 3 years to get diagnosed as it is a slow progressive disease and my tests did not start to abnormalities right away. It took a lot of tests, consults, and medications to figure out what works best for me. I will either do IV prednisone (methylprednisolone) or oral prednisone when I have a "flare up" which happens with illness/allergies/etc. That combined with pain meds, Effexor, and (Xanax- only while on prednisone). I will get numbness, weakness, and pain at first and then as my nerves start to heal in my hands and feet, that is when I get the tingling sensation. Takes 1-2 months to heal and it probably happens every few months or so. I have also found that sleep is the best medicine. I take two 50 mg of Trazadone and 20 mg of melatonin and I go to bed and get up about the same time every day. Even though I have a progressive disease and am losing strength on my left side and now is starting my right side, I still work full time and I am raising 3 daughters. The Effexor has really helped my attitude and helped with pain. I have tried many other medications but the treatment plan I have now works best for me. I am very blessed to have a neurologist that really listens and works with me.

Hello @kristine522, welcome to Connect. Thank you for sharing the treatment information that works for you. It's great to have a neurologist or doctor that will work with you and listen to your concerns and how you are feeling. Sleep really does wonders to help rejuvenate and get you ready for the next day.

Has your neurologist offered any suggestion on what might help you build your strength up on your left side and the right side?

Thanks again for sharing what works for you.

John