ajw4790

Hi! I think if I understand what you are saying, I kinda get it as well. I think that it is more of a fatiguing of the muscles. I think it has to do with them not getting enough blood supply, and therefore enough oxygen, which makes them easily fatiguable. So, they have to work extra hard and then start to burn with the overexertion and then if rested will get to feeling better. It is a lot like doing bicep curls except a lot less physical work, but it can have along the same line of "side effects". I am not sure if this is what you were talking about or not, but it does sound quite a bit like what I frequently have. Ask your dr. if you have questions. For claudication it will be intense pain, so I wouldn't stress over it, but if you have concern check it out. Hope that helps!

jhjd, I thought what you said was interesting because it sounded a lot like me. My bed is full of pillows. I have a pillow top mattress and then I have two body pillows that I lay on top of, and then my head is on three pillows, and then I have a pillow btwn my legs, etc. It can be impossible to get comfortable! But, it is good to know that I am not alone in these awful symptoms, although I rather we all just didn't have to have them in the first place! Doctorguest, Is B12 tested in routine blood tests?

Hi! Mine was diagnosed when I got my autonomic nervous system testing done. They diagnosed it using the QSART test. It is a sweat test to see if anything is impaired with you autonomic nervous system. I know if you google it you can find a description, I couldn't do it justice. Small fiber neuropathy is when the small fibers of your nervous system do not work properly. Small fibers have both an autonomic and sensory component. I never found a whole lot online about it. But, you can find the most I think looking up autonomic neuropathy. Symptoms will vary... pretty much any autonomic body function can be involved (so, can have an increase/decrease in sweating, gastro., temperature regulation etc.) Can also have some sensory deficits etc. as well, so my fingertips bother me the most. They are kinda numb and raw. Also, I don't have as good of feeling in them as I used to. Also, have a lot of the falling asleep etc. of limbs. Hope this helps somewhat! I am not good at explaining this stuff. Also, try and not self-diagnose, if you have any of the symptoms then just mention it to your dr. and see if they think that there is any reason to think that there may be anything wrong. Because, many of these things can happen to people at times with normal nervous systems.

Hi! I don't know. I take Zoloft but don't have that problem. I do sweat a lot though, even before the meds. I would just say to make sure and talk to your doctor.

Hi me again! I was just wondering if ya'll have the issue of your arms and legs constantly falling asleep? For me it happens when I sit too long esp. on the floor, or with my legs crossed (indian-style), sitting in class, or for my arms sitting on the couch, doing school work, and when trying to sleep. I can some nights be woken up about every hour or more because my arms are hurting, tingly, and kinda numb. I am not entirely sure what to do besides avoid the triggers, which I try, but I have to sleep and I have tried may different positions/places to put my arms. And it is often both arms, so it isn't just that I am laying on one. While awake like in class I try to move around the most I can and be figety which helps, but ideally I wouldn't have to be in one position long. At home I have to get up like every ten minutes, which is great for OI! I finally had figured out this was part of my problem with homework! Not to mention my fingers feel like they were burned or have a bunch of paper cuts (they are all tingly/ kinda numb). I think esp. now that it is getting colder I will try compression hose, other than that the only thing I know is watch my position and move around a lot. So, any thoughts?

Hi! I am in Ohio, so I have been going to OSU Med. Center. I have had EMG's, EEG's, HUT, QSART, Echo, EKG etc. I have had five neurologists at the same time, PCP, cardiologist, and nutritionist. So, it has definetly been getting better I went through another university's health system before and it was awful! Thanks for your help!

Thanks for your responses! It is good to know that I am not alone. Kinda weird though that some of your responses sounded a lot like me!

Thanks for all the help! I will look into a cooling vest etc. And of course plenty of water and layers!

Thanks for everyone's great welcome and help!!!

Hi all! I was just wondering with those diagnosed with both POTS and Autonomic Neuropathy what other symptoms they have they have been told is due to the neuropathy, and how far does this often progress in POTS? I know that HR, BP, and gastro. are often affected other than that I am not real familiar. I have the HR, BP, and likely gastro. affected by it. Also, because mine is technically small fiber neuropathy, so there is a sensory component, I was wondering if anyone has been diagnosed with sensory loss due to this condition? I know that my finger tips can be very strange feeling at times like someone cut them with a ton of paper cuts, they can also feel numb, and tingly. Thanks!

Doing laundry can be really bad too!!! With all the bending over, heavy wet clothes, and the dryer producing all that dreaded heat!!!

Hi! Yeah, I know it had given me migraines, so sure enough I went and looked up the ingredients. It has sucralose which is the same as Splenda, which is considered an artificial sweetner. So, ideally if it didn't have that in it the flavors etc. make it look very appealing! Thanks for all your help!

I think that is a good brand. I wonder due to the nature of blood volume type issues if it would be possible if your size may flucuate, so sometimes they may be too big from when they were measured? I don't know, that may be a leap? Are they too high? Probably should contact you prescribed them. Hopefully you will find a solution.

Thanks for all the great info!!! I hadn't heard about using the Propel before, but unfortunatly I can't consume artificial sweetners, so it isn't an option. Also, my stomach doesn't tolerate much of anything tomatoey, so the V8's out as well. But, have found the little Capri Sun Sport singles that you can put in a water bottle that are somewhat like gatorade (less sodium), and Powerbar annd Clif bar drink mixes. The powerbar one has 1800 mgs of sodium in a liter, so it is pretty high salt, I just have to figure out how to make it all work! I have also tried Accelerade which is good, and it has protein (i am on a high protein diet). Thanks! Where do you get the Gatorade Endurance?

Was it just at the top? Could it be like a friction/rubbing thing? Are they the right size? Or maybe you could be sensitive to whatever may be on them from manufacturing, does the directions have cleaning directions that you can try to wash them to get any residues off. Also, if you sweat etc. you can also get irritation, I don't wear them, but maybe sometype of powder to absorb moisture? You might want to check before doing that though. maybe also watch having any lotion etc. on before putting them on. Good luck!

Thanks! At least I know I am not alone. I just wish that I could find a solution. I too have had conversations (evidently) with people that later I found out happened that were complete news to me!

Hi~ Sorry you have had such bad luck! Not that it will help you any, but unfortunately I think that this happens more than it should. I as well was thoughly ignored, told not to return, and that they could not help, me by my neurologist. They also managed to lose part of my medical records! They didn't catch anything, I have since seen a combo of five neurologists that have found multiple diagnoses and helped me out a lot. And believe me they are a lot more skilled in their profession. I was also told by a rheumatologist not to return... I have also since then been told by multiple drs. that they were out of line and that it is likely that I have RA, but because of this dr. I am not getting any help in that area of my health. So, best advice from my experience find a good/great health system near by with a lot of well educated doctors, and if you can find the right doctor they then can often refer you out to other great specialists. Good Luck!!!

I was curious if anyone else out there had childhood epilepsy or epilepsy currently? Or any history of seizures? I had epilepsy as a child, I don't figure there is any correlation... Also, does anyone else have a movement disorder? Example Essential Tremor? Just curious to how many people have multiple neuro. types of diagnoses. Thanks!

Hi! Heat brings on a lot of my symptoms. So, I know avoid it right!? If only it were that simple! The worst for me can be at school where I can't control the environment in the winter. They crank the heat! People can have sweat stains like everywhere, it can get bad. Anyways, I have pleaded that they do something about it. I guess we'll see, doubt there will be much difference. There are no windows, and I will probably take in a fan, but if it makes any kind of noise, I know there will be complaints. Also, not everyone runs as hot as me! I know to have plenty of water, and dress in layers, including some very light ones. Ask to leave the door open etc. It has gotten so bad that while I am doing a practical exam (doing tests on a "patient") with a professor grading you, I have almost taken off my shirt because I had a sports bra on and was way to hot and blacking out. Well I may or may not have done much for my grade, but I figured it was not the professional thing to do! So, I failed the exam, was blacking out, and running to the bathroom because I thought I was going to throw up. So, is anyone else like this and have you found anything that works? This goes for summer heat too, but at least you can escape that by going inside. In the winter it is freezing outside! Thanks for any hints!

Hi all! I don't know how well you will understand, because it may be just me... But, I frequently have times where I do stupid things because I am so spaced out or am just running on autopilot (some kind of out of body experience type of thing). I don't mean this in a weird way, but I tend to I guess have symptoms that are a lot worse than I am consiously aware of and continue on like nothings wrong. This gets me in a lot of trouble, by not taking the warning signs and finding some way out of the episode. Anyways, it happens frequently, and I was wondering if it happens to other people and how do you work with it? For me an example is being out shopping (a lot of standing and walking) when it is over 90 degrees out and will be have a conversation with my family, and make a fool out of myself. I went on how much I liked a particular food (meat) to my own sister, like trying to get her to try it, but she has been vegetarian for like five years. I run on some kind of going through the motions autopilot mode, but am not entirely able to think through everything I am doing. I also have "woken up" later to find myself in the mens bathroom! Whoops! So, heat, standing etc. for a long time, and kneeling and getting back up tends to bring this on. It really seems sometimes that it isn't until I start to come out of it that I realize that there was even a problem. So, anyone else have this problem? Any hints? Besides the obvious avoid things that can make it happen. I know I am weird! Thanks!

Light bothers me ALL the time! I should probably get and use sunglasses. Artificial flourescent lighting is probably the worse. I especially have issues with glares and mirrors making me dizzy. I think that it is all the light bouncing around that makes me dizzy.

Yeah, vacuuming makes me feel crappy. So, it doesn't get done often! The up and down, reaching, and bending over with cleaning is also hard and causes symptoms for me. Cleaning is exhausting!

Yeah, I get short of breath sometimes, or just have an issue trying to say what I am thinking etc. I also really have an issue with head nodding too much and making myself dizzy. I have to try to remember and not do it! I also have a hard time with conversations if I am standing for a long time or am on some unstable surface (rocky chairs or rolling cushioned stools are awful... I lose my balance and feel really dizzy).

I have seen both to and not to drink gatorade. What have ya'll been told or found to be true? What do the specialists say in regards to this? Also, does anyone have a favorite electrolyte/protein drink... I have tried some, but I am not sure that I have found the right one yet.

Hi Everyone! I am new to the board. I just wanted to quickly introduce myself. Hopefully I won't make too many mistakes trying to post etc! So, far from what I have read on this board has been very helpful to me! I see myself in a lot of others comments. I just kinda always figured I just had my little quirks, but maybe there was more of a reason behind them! So, I am a 23 year old grad student trying to survive school, and determine if my chosen career path is even feasible with all of my symptoms etc. I am hoping for the best, and that everything will get better! So, I have struggled with multiple symptoms throughout childhood, I really don't know when everything started it seems like a lot of it has always been there and so it took me a while to find out that some of it wasn't normal. Anyways, throughout the years I have been diagnosed with Essential Tremor, Migraines, NCS, POTS, and Small Fiber Neuropathy. As far as I know there was no "cause", but likely it is all genetic, due to some similarities of symptoms in other people in my family. I hope to be able to work on finding some ways to decrease my symptoms. So, if this sounds like you or if you having any words of wisdom let me know! I need all the help I can get! I am currently on meds: Primidone, Zoloft, Atenolol and trying to continue to treat the residual symptoms (there is still a lot) with diet. So, any specific hints on what works diet wise for POTS etc. would be great! Thanks!