still working with small fiber neuropathy
Just wondering if any of you out there with SFN are still able to work. The fatigue and flu-like feeling I have are crippling,but I'm trying to keep my job. Do any of you experience the flu-like feeling? Is there anything that can help?
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@swartzki, @lorirenee1 My memory includes one observation of hair loss and it was related to mercury allergies after dental work during prostrate cancer. The hair grew back all white. Did your medical practioner advise you that you might experience hair loss? Be content today and feel safe. Chris
Tramadol made me feel so nauseous that after trying it a few times I took more than 45 pills back to the Pharmacy for disposal. Thank goodness I had a good drug insurance plan! It's worth noting it didn't touch my pain either – so Tramadol is on my 'do not bother' list.
Drugs are weird that way. They work well for some but not others.
I'm guessing the hair loss is neuropathy because my scalp tingles, and it feels like bugs crawling around. Awful. The hair loss was one of the first problems I had, and the dermatologist was the first medical expert to suggest neuropathy. I thought I couldn't live without my hair. So hard. I really had beautiful hair. It defined me. Guess God taught me a lesson there. My preacher said to be,"You'd' be surprised what you can do." You are so sweet, Lori. I sure hope this new med gives you some relief from that pain. I'm so happy to hear the breast cancer surgery was a success. Thanks, Chris, I'm learning to be happy any day when I'm not in physical misery. Today is good. Iceblue,I agree that is weird about the tramadol. I sure hope you find what works. To all of you, I tried medical marijuana too, but it caused extreme anxiety. Admittedly, I didn't try all of the options. Maybe that would work for some of you.
I tried quite a few antidepressants before I found that Wellbutrin 240mg was effective, in 2006. A year or so ago I was starting to be quite depressed and suicidal again, so I talked with the psychiatrist about it and he started Mirtazapine 45mg. That's been working for me, though I have been feeling a low grade depression for a couple of months.
I take Clonazepam, and St. John's Wort, which also can be helpful for depression. I also take morphine sulfate contin and Imipramine for neuropathy
I take Generlac, aka Lactulose, for constipation. It does the job fine. It's a prescription, covered by Medicare, so no cost for me.
In 2005, I was beyond depressed, too, and it took 5 years of medication and therapy to climb out of the hole, and several more years to shake off the compulsive thoughts of suicide.
@swartzki – I am really sorry about the loss of your hair. I can relate just a bit because my hair used to be my 'crowning glory' too. I didn't lose it like you did, but about 10 years ago I had to cut and stop colouring it because it became extremely dry and brittle. Thankfully my natural hair colour (plenty of grey now!) is quite beautiful, it is much healthier, and although it took a long time – I've grown fond of my short hair.
I have not had IVIG but have learned about it in case it is an option for me in the future. My symptoms began 3 1/2 years ago but were not diagnosed properly until last February. I worked for 9 months after symptoms began but was also diagnosed with chronic migraine during that time. My disability was approved based on migraine then other symptoms escalated ultimately diagnosing SFPN. I tried tramadol back in the early stages of pain but it did nothing for me. I've been on hydrocodone and that helps, for the most part. I wish you well and am certainly here for you if you need to discuss the challenges of working with pain or my disability journey.
Do you take supplements? Im sorry to hear of your hair loss. That would devastate me. Not sure if it'll help your situation but Biotin is great for strengthening hair and nails. I don't know if it promotes re-growth however.
Hi,Rachel. Yes, I did biotin and a host of other hair supplements. It just keeps falling. The hair loss alone makes me think about suicide, but then I realize that it is just hair, and I'm a coward I guess. I don't want to leave that way. The extreme exhaustion and pain makes me think about suicide, but then I think of my two grandchildren, and I want more time. I don't know how I can keep working,but right now I have no choice. I'm waiting for results of skin biopsy. I too have migraines. I was going to try Botox, but my insurance was going to have me pay 500 for the medicine, so that was out. Nobody has said how SFN affects life expectancy. I trust in God, but I have felt abandoned. I know He did not do this to me, but I feel lost. Hey Jim, if you're out there, you've mentioned your depression a lot. Let me know how you are feeling.
Hi @swartzki, I gave up work because of SFPN, my feet were so painful that it made simple walking a chore. I did work from home for over a year, that was much better. Luckily I was able to file for disability. I soon found that I filled my days with new activities, like studying the Bible. Grandchildren were and still are an important part of my life. I was fatigued, so I took naps. It took some time to even partially accept my SFPN condition and even today I still think there will be a turnaround someday. Its not unusual to feel abandoned by God.
In fact ,its probably normal. Your faith will wax and wane over time.Let the thoughts come and then let them go. Look for God working in your life despite how you feel. Hold on to your love of your grandchildren. You will know when its time to cut back at work and know that you might go kicking and screaming. We never know when our last day might be so give thanks for today. Your job is just to show up each day, for worrying never solved one thing. Wigs are in, so what color do you want to be today? Letting go of pride is so difficult, it still is for me. Ask yourself, what is the worst that might happen ? might our life expectancy be shortened or lengthened? will we all just be going home, back to God, "Return to Love" as Marianne Williamson has so wonderfully been quoted.
Keep the faith,lose the pride,stay the course and Pray for guidance and know that you are loved. David
Thanks, David. God is speaking through you today! I don't fear death itself. Like you I really believe that I will go to a wondrous place. I have two big worries: taking care of myself while I'm here and not being around to see my sweet grandbabies grow up. You are right about all of it, and I will try to follow your advice. May I ask how long you have had your diagnosis?