Next steps in determining cause?

[BlueEmpath]

My feet started burning in January. Flashes of burning heat on upper back when doing the slightest activity in March. Last 6 weeks, increasing, debilitating burning in arms and legs. Bladder and bowels now affected. Slightest breeze on skin hurts. Been to podiatrist, primary care physician, cardiologist, rheumatologist, neurologist, gynecologist, endocrinologist, and emergency room. Have had 2 ekgs, echocardiogram, stress test, chest xray, chest ct scan, ultrasound of abdomen, spine xray, shoulder xray, mri of spine, ultrasound of thyroid, and bloodwork 4 times. I still have no answers. Have been on gabapentin for 4 weeks - starting with a low dose of 100mg at night. But quickly ramped up to 900mg a day. And now that is not even helping. Nighttime is the worst, and I am getting no sleep due to lower back pain, urinary and bowel issues. I am not diabetic and don’t drink or smoke. I am getting worse every day and getting no explanation from doctors. What would you do next?

[RoadRunner44]

Hello, I'm just writing to say I appreciate how difficult it is for you at the moment and I'm so sorry as you seem to have come up against a brick wall. I developed neuropathy in my hands and feet two years ago. The burning feet was horrendous. I saw a new doctor who, through blood tests found I had developed kidney disease (probably through medication) and found I was also pre diabetic. Then all support stopped because of covid19. I did some research on line and a very helpful member of this forum mentioned that some medication, can cause neuropathy. He asked if I was on the anti depressant Citalopram. I was, so decided to come off the tablets over some months. Perhaps I was lucky as very slowly the neuropathy disappeared and the horrible symptoms have disappeared.

I can only suggest that in view of my own experience you look at the medication you are taking to see if there could be a connection.

Kind regards and best wishes

[BlueEmpath in reply to RoadRunner44]

Thank you for your thoughtful response. I was not taking any medication. I am so happy that you are feeling better. I wish you continued good health.

[orangecity41 in reply to BlueEmpath]

I too have neuropathy and Chronic Kidney Disease. Diagnosed at level 3b. Diet and prescribed exercise has helped slow the progression toward dialysis. I also have a neurologist who is a big help. I also had Nerve Conduction Study. It is possible that CKD affects peripheral neuropathy.

[Kernowdot]

Hi, I’m in a similar boat to you symptoms wise and had Nerve Conduction Studies just over three weeks ago and waiting on results.

It’s seems like with nerves etc... it’s hard to diagnose but doesn’t help at all when you’re left waiting.

Hopefully you get sorted soon or get a little relief.

[Kennyatw]

I have had neuropathy in my feet for 5 years and my neurologist tried several different antidepressants on me but things got worse so he has me on 200 mg of gabapentin 3 times a day and it doesn't seem to make a difference. I also have ckd stage 2 and don't know if that has anything to do with the neuropathy which was caused due to a side effect from taking harvoni for hep c. I read the other posts that the other people wrote and am going to ask my doctor if that has anything to do with the ckd.. And I have had most of the tests that you have had.

Good luck

[BlueEmpath in reply to Kennyatw]

It is so painful and frustrating. Mine is my whole body. Arms, legs, back, feet - constant burning. I hope you find answers and pain relief

[Harrzack in reply to BlueEmpath]

Just a note of sympathy. I’ve had it mainly in my feet since the 80’s. Can’t imagine how a awful it must be to have your whole body involved. 🤭😢

[Kennyatw]

Thank you and I hope you do too. And can you mail me at gigrape@hotmail or text me at 8023101157

[Kennyatw]

BlueEmpath text me at 8023101157 or email me at [e-mail]