Small Fiber Neuropathy discouraged

Start of my story. I was healthy. I was the person that was a problem solver for friends. My major annoying health issue was insomnia. In the fall of 2019, my doctor took me off of a medication cold turkey. I returned to his office many times with excruciating flank pain, leg, pain, and insomnia. He told me to, "settle down and that there was nothing wrong with me". It felt like I stepped into hell. I wasnt diagnosed for two and a half years.

My story continues: I was in severe leg and flank pain. I sought out a new general practioner. She believed I has MS. An MRI showed neg for MS. She suggested breathing exercises and relaxation. I tried my hardest but still screamed into a pillow. The worst pain was at night. I was assessed for dehydration and cardiac problems. My daughter found me on my bedroom floor 3 months after initial symptoms. My entire body was in pain. Shooting pain though the flanks and legs. Stabbing in my face. The ER admitted me. I asked that no one speak to the hospital doctor but me. My husband and daughter had been traumatized. So of course they invited my daughter in with the doctor. They just said, "sorry we miss that sometimes, but I'm sure you were really ok with the visit." What could I say. The hospital doctor believed it was the discontinuation of medication caused nerve damage but wanted formal diagnosis from a knowledgeable doctor after discharge. I asked that the hospital refer me to a doctor. They referred me to a PA and a sports medicine doctor. I was prescribed Gabapentin. I did not receive a diagnosis and treatment for a diagnosis for two years

Thank you for letting me tell my story. If I can tell it I can let it go. Most tell me to stop. Then I hold on to it and it festers. I finally get to let it go. With your blessings I will continue.

Continued: I was referred to a sports med doc and a PA. The PA was one of the best medical prof. He ran every test to give a name to my excruciatingly pain. He also saved my life. I was titrated ip to 1200 mg og Gabapentin. I was in pain, but also I felt a horrible saddening and agitation. It scared me to death. I saw no hope. He said he was going to tapor me off of the Gabapentin, to trust him and, " hold on" The tapor was hell. I didn't sleep, heart raced, sweat, and had severe panic attacks. I still had severe pain. But that earie saddness lifted. He just said sometimes that is a side effect. The searing pain continued, but I wanted to live.I didn't know what was wrong with me.
Spoiler alert: Later a neurologist stated the only option for my pain was Gabapentin. He assued me that the reaction I had would not happen again. Gabapentin was removed from my allergy list. Although, I didn't have an allergic reaction I had a lethal on. I had the same reaction. The definition of an idiot is to have the same thing happen twice. I guess I was an idiot. I was desperate.

Don't get discouraged I think I know what you need. I've been suffering for years and last week I found the key. You need lidocaine ointment and you will need triamcinolone acetonide ointment a corticosteroid. Use a lot of this with your normal creams and medications and it should work. My sfn was devastating until I used these ointments. I was getting pains everyday and haven't felt anything since last week. At least give it a try.

I will pick some up at the pharmacy. It is worth a try.

My story continued: Physicians did what they could. Some of it sad, some comical. They were stumped and nothing worked. The worst was losing friends and family. Pain is very isolating. A lack of a diagnosis slowly drains hope. I was fighting. My husband and daughter never gave up. My advice is to have a team. Don't feel guilty for using a team, but never forget to say thank you and "I love you." I no longer could pay them back with deeds. I prayed for them and loved them. Grieved for the people I lost. I sought out a the neurologist that did an initial nerve conductivity test and asked for help. He related that the doctors I saw just, " didn't understand neurology. " Then he walked away. This man never gave me eye contact. He ran so many tests. I was wearing two TENs units. I cried and rocked each night. Started amytriptiline and titrated to 120 mg with very little success. He began to tapor it down. It felt as everyone was giving up and we still didn't know what was wrong. I look back and feel that maybe, just maybe I as stronger than I thought.

Only three more writings and my story will be up to date. It has been almost thee years.
I am a doctor's med error. I exist and fight to live. I have pain fom small fiber neuropathy all over my body.
Continued from above: The neurologist was taporing me from two medications. They had no effect on my pain. I was having difficulties with two tapors and pain. I was assessed by a rheumatologist, but came up with nothing. The neurologist placed me on 60 mg of prednisone for 2 weeks. 40 mg for 2 weeks and then 20 mg daily to rule out poly rheumatatica. My reponse to prednisone was not being able to sleep, severe mood change, and worsened pain. There was never a tapor schedule set or a diagnostic appointment. It was covid. Their office got "busy". Four months later I was still in severe pain. The neurologist's office said they only had one more pain medication option for me. That was to remove gabapentin from my allergy list and represcibe it. As I have said before, it was not an allergy but a severe reaction. I was desperate.

If I could go back in time, I think I would have asked for an advocate for my husband and I. I was taporing from 2 medications, on prednisone and was prescribed a medication from an allergy list. We needed advice. We had stopped living each day. We were fighting each day. My question is where could we have found an advocate?

Coninued: The above stated senerio was a disaster. I am lucky to have my husband. It became dangerous. After the medication fiasco, doctor and ER visits later I found my current internal medication doctor. She started me on a slow prednisone tapor in September in February at 8 mg, I started thinking more clearly. She kept a close look at gabapentin. It was a hard choice to decide to tapor gabapentin or prednisone first. Gabapentin makes me feel so very sad. She medicated me for pain. I slowly could function better. Until June, I could hardly walk acress the room and didn't know why.

One more writing. It will address a diagnosis and stabilization place. It took 3 years.

I will try to continue my story later. Im currently very ill. The prednisone tapor has been paused by my endocrinology doctor and internist. As I said before, prednisone was initiated to rule out a disease. I did not have the disease. I take it for no reason other than it needs to be tapored. Gabapentin taporing has started. I have gone from 1200 mg to 700mg today. Good news I can ambulate normally, think clearly, spasms are better and the rash is fading. Bad news is Im really sick throwing up, heart races,dizzy, have not slept, severe pain spikes. All the same symptoms of the last Gabapentin withdrawal. I will finish my story later