potsgirl Posted March 12, 2011 Report Share Posted March 12, 2011 Hola Everyone~For the last two weeks I have been having a horrible time with my small fiber neuropathy. Sometimes it's my left hand, sometimes my right, sometimes both, but they hurt like all of the bones in my hands/wrists/forearms have been crushed, and I can hardly do anything with my hands. I've tried wrapping them, and it helps a little. I take Percocet in the morning, and Lyrica the rest of the day for pain, but it's just not controlling it. Does the pain cycle like this for others? Does it seem to mean that my SFN is progressing to a worse stage? Please let me know your experiences....I'm going crazy!Thanks in advance,Jana Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 13, 2011 Report Share Posted March 13, 2011 Has your doctor told you about helping the neuropathy with Alpha Lipoic Acid? Google it, it really is great. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 13, 2011 Author Report Share Posted March 13, 2011 I've never heard of it. It sounds like it's primarily used for diabetic neuropathy. Is that what you have? Is it safe for small fiber neuropathy that is caused by our autonomic dysfunction? I would love more info on how you take it and how often. Is it just used intravenously? Thanks for the tip, and please send me a little more info if you have the time.Cheers!Jana Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 13, 2011 Report Share Posted March 13, 2011 No, no diabetes. It is good for the nerves, diabetic or whatever so it is really good with the neuropathy with POTS. I do not have sm. fiber or peripheral neuropathy. It is good for the nerves that tell the muscles etc, to pump the blood. It has helped me with my POTS, just wanted to mention it. Maybe you can find a doctor that knows about supplements. Very good antioxident. Antioxidents are good for the nerves. Keeps them healthy.I take a good brand of Lipoic Supreme. Pills, not IV. I have two integrative MD's that tell me how much and how often to take, brand etc. I have a schedule of supplements. Three times a day I take them. MANY. I am improving. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 14, 2011 Report Share Posted March 14, 2011 Jana, my neuro had me start with alpha lipoic acid before I tried any other meds. Unfortunately it didn't work work me. He said it was 50/50 as to whether it would help or not. I might just try it again, though. I'm SO glad you posted about your bones hurting. My burning skin started in early 2008, but later that year I told my PCP that my arms just HURT all the time. I thought it might be blood pooling and even investigated getting compression garments for my arms (but decided against it because it would be so impractical). My legs feel this way, too, and it's been hard to distinguish whether the cause of my leg aching is due to my hip/lower back injury or small fiber neuropathy. A physiatrist last summer told me that it was due to the SFN mostly. I weaned off of gabapentin this last summer and found these aching pains to increase tremendously (which surprised my neuro when I told him). My neuro did say that SFN usually does worsen over time, which might be the case for me. It's hard to say because I've had pain since 2008 and it's hard to tell if it's much worse. I try to stay busy, or at least to keep my mind busy, so I don't think about how my body feels. I'm fortunate because my SFN pain is not nearly as bad as many other folks.Funny thing, I notice that if I'm not hydrated or not wearing compression, my aching pain and burning skin pain is worse. Kind of crazy how that happens for me. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 14, 2011 Author Report Share Posted March 14, 2011 Thanks to Sallysblooms and Thankful for your answers. I'm going to call my neuro to see what dosage he wants me to try. After thinking about it for awhile, I do remember him mentioning it once a while back. Sure can't hurt! Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 14, 2011 Report Share Posted March 14, 2011 There are good brands also, and the right doses to work. I hope he knows! Let me know! Quote Link to comment Share on other sites More sharing options...
comfortzone Posted March 16, 2011 Report Share Posted March 16, 2011 Hi Jana --I was saddened to read about this crazy flare up in your symptoms! I have read about all these different reasons for SFN - amloidosis, Fabry's dz, Tangier dz, diabetes, gluc. intolerance, HIV, h.o. med toxicity, h.o. alcohol, too high triglycerides, Sjogrens.........and the good old fashioned - we don't really know exactly why you have it....I was of the impression that dysautonomia in its varied forms were a result of SFN or at least SFN doesn't help things....and not so much that you get SFN from dysautonomia...So for instance - I had four nights in a row where upon waking up in the morning I had hugely burning bottoms of my feet and up the back of my legs...but soon into the morning it went away. After four nights I was relieved that then it just disappeard. I also noticed how at my job I could pick up extremely hot items and not even flinch - where other people were like - 'girl use tongs or you'll get hurt' Also my hands - are weird - my thumb twitches non-stop a new symptom - and the 'usual' of extreme stiffness in the morning with no ability to grasp them shut in a fist or open them fully - and hour or two into the day - the symptom disappears.When I report to the doctor any worsening of my symptoms - the answer is yes small fiber neuropathy symptoms can progress - With me the suspected cause is glucose tolerance being not normal or an HBA1C of about 6 for a few years - so that pre-diabetic thing.So no real 'doctoring' type stuff aside from vigilant every six month glucose testing - wt. loss - stuff to help metabolic issues...in case it is my blood sugar causing more extensive damage to the myelin sheath of those small fiber nerves...But in the back of my mind - since the list of causes is kind of huge - and they don't know 'for sure' the cause of mine - I might go through the list and see what may help....So I could try gluten free for awhile - though I do not have Celiac disease - it cannot hurt and may help I could also try that supplement mentioned .... and just try to live the healthiest life I can - with greater focus...As far as symptoms and helping them - In the January Clearances at Kohl's I got a nice foot bath - and with it came a paraffin warmer for hands deal. I've done that wax dip thing in physical (hand) therapy and it was pretty soothing to have coats of the wax on my hands then the hands in plastic bags to keep in the warmth...Anyway I hope you feel better -- I think you see Dr. G? Maybe as you said give his nurses a call and report what's going on and get some recommendations so this will hopefully pass - maybe he'll want to see you sooner than your next appt.Keep smilin' and may those poor hands get some relief asap! Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 16, 2011 Report Share Posted March 16, 2011 Gluten can be a problem for the nervous system if you are sensitive. I am gfree for POTS. Doctors should ALL know about Alpha Lipoic Acid. It is helpful to the nerves. There is a ton of info on gfree and ALA for the nerves.I take many antioxidents, but ALA is one of the best and most prescribed. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 26, 2011 Report Share Posted March 26, 2011 I'm going to give the alpha lipoic acid another trial run at 600mg twice a day. I'll try it for at least a month unless I start having issues (I tend to have strange reactions). Quote Link to comment Share on other sites More sharing options...
sandymbme Posted March 27, 2011 Report Share Posted March 27, 2011 Hey Jana,Sorry you are struggling with this. I don't have any helpful advice, my pain level has been escalating quite a bit in the last year or so. I can only offer empathy, which frankly, isn't bloody helpful! Hope you find some relief in trying these supplements, let us know if you do!Sandy Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 27, 2011 Report Share Posted March 27, 2011 How are you doing with the Lipoic Acid. I take Lipoic Supreme so that is all I know about. Not sure about others. I hope it helps. Let us know! It is doing a great job for me. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 29, 2011 Author Report Share Posted March 29, 2011 Hello All~Sorry I haven't been on recently. I've been in the hospital due to a bad fall where I hit my head and I'm on Coumadin. It always ensures you a couple of nights in the hospital. ALSO: I was found to have low albumin and HIGH Ig(A). Anyone familiar with that?I have not been able to try the linoic acid yet. Does anyone have a good brand to try? I haven't been able to get out shopping yet since I went straight to a motel from the hospital - they're doing construction on our home. Thanks again for all of your replies. I hope to try this supplement in the next week or so.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Noreen Posted March 29, 2011 Report Share Posted March 29, 2011 Jana-So sorry about your fall. I hope you are well on the way to healing and the bruises aren't too bad.I did not know you were on coumadin. May I ask for what condition? I have been trying to avoid it.tks,noreen Quote Link to comment Share on other sites More sharing options...
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