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03-17-2015, 02:52 PM | #1 | ||
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Junior Member
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Hi everyone.. it's been a while since I've been on the forum. I did several rounds of IVIG over the past year with mixed results. I have lots of burning still - all over the body which waxes and wanes. Has anyone found relief with supplements? I find that I can't tolerate most supplements or meds due to GI side effects or insomnia. I am already dealing with lots of fatigue and sleep issues. Other new symptoms are severe heat intolerance - anything that gets my heartrate up with cause a burning prickly sensation all over my body. I have to stay in cool environments. I can't do hardly any physical activity. I also have lots of food sensitivities and IBS symptoms. I have been doing gluten and dairy free for almost 1 year now.
I also get frustrated b/c this all started after a flu vaccine in Oct 2012. I wish I never took it. Life has never been the same since - I am 34. Thanks for listening. |
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04-16-2015, 10:14 AM | #2 | ||
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Junior Member
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Quote:
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04-30-2015, 11:17 AM | #3 | ||
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Junior Member
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Any of you have twitching and jerking to go with it?
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04-30-2015, 11:57 AM | #4 | ||
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Junior Member
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No twitching or jerking. No muscle involvement. Sensory feeling of burning.
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04-30-2015, 03:48 PM | #5 | ||
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Junior Member
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What about the others?
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04-30-2015, 10:23 PM | #6 | ||
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Junior Member
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Quote:
I will follow this thread.... I had severe reaction to flu shot in October 2013. Ended up in ER - I have myasthenia gravis and it was exacerbated almost to point of a crisis. In fact I posted in NeuroTalk under myasthenia gravis about this. Have never been the same. Docs refused to allow flu shot this year. Now have PN symptoms; pretty severe; I am new to the PN forum, just learning. Just diagnosed. I have almost if not ALL of your symptoms. But I guess I just got used to having "STUFF" happening and WHO wants to tell their docs a bunch of symptoms at each appointment? I hear they want to hear 2 or 3 at most..... Sighh.......sorry to read about yours Altho in hindsight I believe I have had the PN symptoms for quite a while, especially since the flu shot bit me in the you know where - but they have recently escalated to where I really notice them and have much pain. The myasthenia gravis and a few other miscellaneous diagnoses have kept me ill and busy enough trying to manage - but adding the PN. O myyy = overwhelming at times. The flu shot and PN and other illnessess. Hmmmm.......there must be a link!!! |
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05-01-2015, 06:44 AM | #7 | ||
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Junior Member
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[QUOTE=SoftTalker;1139478]I will follow this thread....
I had severe reaction to flu shot in October 2013. Ended up in ER - I have myasthenia gravis and it was exacerbated almost to point of a crisis. In fact I posted in NeuroTalk under myasthenia gravis about this. Have never been the same. Docs refused to allow flu shot this year. Now have PN symptoms; pretty severe; I am new to the PN forum, just learning. Just diagnosed. I have almost if not ALL of your symptoms. But I guess I just got used to having "STUFF" happening and WHO wants to tell their docs a bunch of symptoms at each appointment? I hear they want to hear 2 or 3 at most..... Sighh.......sorry to read about yours Altho in hindsight I believe I have had the PN symptoms for quite a while, especially since the flu shot bit me in the you know where - but they have recently escalated to where I really notice them and have much pain. The myasthenia gravis and a few other miscellaneous diagnoses have kept me ill and busy enough trying to manage - but adding the PN. O myyy = overwhelming at times. The flu shot and PN and other illnessess. Hmmmm.......there must be a link!!! [/QUOTE So sorry. I as you know am a victim of the vaccine. No Meds or supplements have helped. I burn from my face arms and legs. I am off everything. Tried acupuncture, robotic laser therapy and am finished. I do get relief when I sit in direct sunlight. Warm weather helps. |
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"Thanks for this!" says: | SoftTalker (05-01-2015) |
05-01-2015, 10:05 AM | #8 | ||
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Junior Member
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Oh
I am so sorry for you. I just read the above message from you and read a couple of your previous messages. I hope that by now you have adjusted somewhat, and have at least a little support from your family. This PN is not fun, in addition to your other serious health issues, I can only assume for you, it is really the PITS. Life is not fair; we all know that. But sometimes the odds really seem stacked against some of us. Hang in there. Only we who have walked in these shoes understand. And it is not always easy to walk, especially with PN. I believe we with chronic illness often become stronger and wiser in our hearts and minds,, when illness causes us to suffer. Thanks again, hugs and thanks for your compassion, dear Posada. SoftTalker aka SoftWalker Edited to add: I am so glad you live in Florida with lots of sunshine and warmth. Interesting how the heat helps your burning........ I live in a moderate part of the US, and the cooler weather (not cold) helps me, which is very good for my primary illness, which is Myasthenia Gravis. Heat is very bad for me. Let's give thanks for being able to live in places which can, somewhat, make our health conditions a bit easier to deal with. |
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05-03-2015, 09:13 AM | #9 | ||
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Junior Member
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It would be nice if one day it all went away
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