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02-12-2016, 11:45 PM | #1 | |||
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[QUOTE=madisongrrl;1198903]Hi Mickey,
I'm so sorry you are going through this. You are not alone. There are many people on this forum that have had full body sensory symptoms that came on quickly. If you look for posts under my name, you will find that my symptoms were caused by Lyme. Many forums members don't know the cause of their symptoms. One good thing to do is to read up on the supplement that are talked about on this forum. You have to put the nutrition in place that will allow your body to heal over time. Hi madisongrrl & Mickey... How are you? I'm sorry you are going thru this kind of pain & suffering. I also have SFN going on to 5 years now. Madisongrl you use the word heal. Is your sfn better? Do you feel like you have healed? I take 300 mgs Lyrica for pain. All other meds did not work. I tried and still taking some of the supplements mentioned in this forum, mostly by Mrs D. (I still take 1000mcg B12, B1, Biotin, Mag, VitD3). I have had no treatments either ex: IVIG, Prednesone, etc. Thus far I show no signs of healing. I see you take "low does Naltrexone", does/did this help you with your pain. Should I ask my Neuro about this medication? Maybe it can help Mickey with his symptoms? Have you ever tried taking Prednesone and has it helped you? My sfn is still "Idiopathic" even tho the latest blood-work, after 5 years is leaning towards some autoimmune deficiency/disorder or disease. I don't know anymore. I'm also scared and confused about my future. This "disease" has taken over my life. Is there anything you can offer to help "us".. Ty |
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"Thanks for this!" says: | zkrp01 (02-13-2016) |
02-13-2016, 08:44 AM | #2 | |||
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It is no surprise that your symptoms started after a course of antibiotics. There are a few antibiotics that are KNOWN to cause small fiber neuropathy...Cipro and those in that class (Fluoroquinolone) are at the top of the list. They actually have a black box warning for neuropathy.
Of course there are many causes of SFN, but being the timing of your symptoms with the antibiotic, it's likely from it. What antibiotic were you taking? |
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02-14-2016, 09:46 AM | #3 | ||
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levaquin. im aware of the association with PN. my doc thought it was more likely immune mediated related to my infection rather than the antibiotic but he said i'll never know. two months ago i was 100% healthy. now im a friggn emotional wreck. which is a bad thing b/c anxiety and poor sleep seem to make things worse. sometimes i have a good attitude but other times i dont. ive really withdrawn. this is like a cruel joke. my symptoms started as one thing the first month then totally changed the second. numbness and tingling went away then had foot burning, wet drops on my extrems and fasiculations (probably from anxiety and sleeplessness). i think i need to try and ignore everything, paying attention makes it worse.
i keep thinking i didnt realize how good i had it before this. unhealthy thought i know but cant help it. |
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02-14-2016, 11:43 AM | #4 | ||
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I still have days that I feel like I'm dragging around tree trunks--and yes, I get down and wonder if I will need a walker before long and wonder why me. But I also have some days that I just don't notice it so bad. And that's a pretty good day. One more note. I know you have read a lot about b12, but even if your levels are normal--mine were, get a supplement. I have been supplementing for about a month. I can tell a difference. |
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02-14-2016, 06:21 PM | #5 | |||
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and changed over the 1st few months. Not the same exact order as yours, but I don't think that really makes much difference. At this point they are mild enough to not wreck me most of the time.
I totally relate to the sleep issues and I want to share what I have done that has helped. Fasciculations: magnesium & calcium in the form of a pill and also a magnesium lotion has benefited me greatly. I also think D3 is quite important. I have been able to literally stop fasciculations by using my 10's machine. I don't mean forever, but for that night so I can sleep. Sometimes they may come back very mildly in the early morning but a little magnesium lotion usually takes care of it and I can go back to sleep. Burning: I believe Benfotiamine and fish oil have lessened the burn. Taking gabapentin might be helping also, especially with sleep. I took that for some time and am now weaning off. In the beginning until I got this all under some control I also gave in to a sleeping pill when I had something important the next day or was an emotional wreck from lack of sleep. If you want any specific info just PM me. Hang in there. Quote:
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"Sometimes I've believed as many as six impossible things before breakfast." Lewis Carroll |
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02-14-2016, 09:18 PM | #6 | |||
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"Thanks for this!" says: | bluesfan (02-14-2016) |
02-15-2016, 08:15 PM | #7 | |||
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[QUOTE=madisongrrl;1199257]I've been getting better every day. My burning has greatly reduced in all areas of my body.
LDN has seemed to helped with the pain, along with the antibiotics. I take 2.5mg of LDN each night before bed. This might be a good drug for you to try, especially if there is a suspected immune/autoimmune component to your SFN. I've never taken steroids; they are contraindicated with Lyme disease. Madisongrrl, Thank you for responding. I will talk to my Neuro this coming Thurs about the LDN. If I understanding you correctly, Lymes is the cause of your sfn? What did you take that reduced your burning? And does Nortriptyline help your pain. Do you get any SE's with it. I tried Amitriptyline but it caused skipped heart beats. Plus my BP is normal to low, and Doc said it would probably lower it more. I would love trying it after reading what MrsD wrote, that it could have some "nerve healing" affects. Could that be why your getting better? |
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02-15-2016, 09:30 PM | #8 | |||
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02-17-2016, 12:19 PM | #9 | ||
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I dont see the neurologist for another 3 weeks. i have some decent days and some bad. It really is hard to ignore the symptoms. Any tips on that? Im scared to try anything that would affect me during work. Although thinking about my issues 24/7 probably isnt helping. given the sensory nature of this whole thing, any little twinge bothers me now. it may be normal or abnormal but now im aware of every little thing. thats bad. what oral supplements are useful. im taking a bunch but its hard to tell if anything works!
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02-18-2016, 08:28 PM | #10 | |||
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I went to my Doc appt today. Asked the neurologist about Low Dose Naltrexone for my pain and burning. He laughed and said "that stuff doesn't work for your kind of pain". I told him I talked to a few people on this site that use it and have gotten some relief. He said he hardly prescribes it and wouldn't prescribe it for me! I was so mad...I will ask my PM Doc on Monday what he thinks. Wanted to share this with you and others that use this med. I'm reallly getting tired of this pain and these damn doctors!! |
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