[fembot]

I'm sorry if this seems too long -- I don't normally ever post in forums, but I think I'm at a point where I need to. My boyfriend actually came across them while trying to search for supplements for my leg pain, and I've been coming back ever since to read as much as I can. It's a very lonely feeling having to go through this, but I've felt less alone since I've found you all.

My issues started in 2010 -- although at the time, I didn't realize they were of any importance. The first time I had ever felt any pain was when I attempted to quit smoking using an e-cig -- Blu, to be exact. I thought it was a coincidence at the time, but the bottom of my left foot was very painful to walk on. It was almost like a crushing sensation. I got fed up with Blu, and a few weeks later, the pain had subsided. I really thought nothing of it.

I got into a car accident in early 2011 -- slammed my head pretty hard. Nothing major (or so they told me), but I had some short term memory loss for a while. I honestly have no idea if this has played a role with anything that I'm currently going through, but I find it all important now.

October 2011, I went in to anaphylactic shock. I'm embarrassed to say it, but it was from marijuana. I don't use drugs -- I've only ever smoked cigarettes. I've tried marijuana 4-5 times in my entire life, each time being a terrible experience. The last time I tried it, I figured what the hell -- if I vomit again or feel very ill, then I do and that will be the end of it. Turns out, my throat closed and I blacked out, and had a whole slew of issues. I was stuck with an inhaler for a while. And this led in to other issues.

I was a person who used to go to the gym 5-6 times every week, worked out for an hour or more. I was in great shape. I'd eat things like peanut butter or oatmeal, among other things -- and then I began to have issues with that. Many things that I used to eat, I no longer can. In March 2012, that's when ingesting foods with gluten in them really began to take its toll on me, both physically and neurologically -- so I cut gluten out of my diet. It was very difficult, and I had plenty of mishaps due to my ignorance of it at the time. It was anything from abdominal pain, to brain fog, head lulling (I don't know what other term to use to describe it, but that's what it was), not being able to speak, etc.

Some months later, I ended up being out of work for a week with a fever. No other symptoms, just a fever that ranged between 101-102.

A month later, I "glutened" myself and then found it difficult to stand afterwards. I also found it difficult to walk. My legs could barely get me up the stairs (I needed help). This lasted for one week, and I used OTC pain killers when I needed to.

That same scenario happened a couple more times. Random fevers, random leg pains -- fevers would appear out of nowhere, but the leg pain would come after a gluten "reaction." That is, until August. First week of the month, I had a fever. Second week of the month, I had leg pain again. I took Aleve and pushed through it, because I happened to be moving at the time.

Almost 4 weeks ago, my leg pain came back with a vengeance -- again, on its own -- although that is when it temperature outside dropped in to the 30s, and the cold weather has NOT been kind to me). It has not gone away. It's been anything from the "bee sting" feeling, to electrical shock-like pain, to burning (especially in my knees). My calves, at times, feel like they're being ripped out if I stretch or try to reach up for something. My calves also spasm. Then 3 weeks ago, I had a 101.6 fever (on its own, once again -- besides the leg pain, of course), that lasted for 12 hours and then dropped to 97.7 -- I did take acetaminophen to help reduce the fever.

Almost 1 week ago, my arms began to ache. Things began to feel heavier. The pain has since increased. I can no longer grip things as I normally would.

Needless to say, I have been a mess. Physically, emotionally, mentally ... everything.

I've doctor hopped, like I'm sure most of you have. I've seen plenty of doctors, plenty of specialists -- some who have made me feel crazy, some who have done some tests and told me to come back in 6 months to retest (with no advice or guidance on what else I could do), and some who flat-out said that they just cannot help me. I went to a new doctor this past Wednesday, and he is the first one I've seen that didn't look at me like I was insane, and genuinely seemed like he wants to help me. I kept no medical records from the past, so we're starting from scratch with the blood work, then an MRI and whatever else we need to do. He is pretty convinced that it's something autoimmune, and I think I'd have to agree.

All of my allergy tests in the past were negative. I know I was tested for different autoimmune diseases, and nothing ever came back positive from that, either.

It was affecting me at my job (and I sit at a desk all day) a little bit before, but now it really is. Actually, it's so hard to focus and do what I normally do that I was just told yesterday by my boss that he thinks I no longer care, among other horrible things. Stress has actually made my pain worse. I kill myself to go to a job (that I can't drive to, for the time being) to have them tell me how terrible I'm doing and give me a paycut. This is a nightmare.

So after reading all of this (and I do apologize for it being so long -- I'm just so stressed out and in need of somewhere to go, or someone to talk to and understand), does this sound like anything unusual? Do you think it should be something easy to diagnose? I feel like I'm trapped in a glass box and everything is just out of reach. I've never been in pain enough to make me even THINK about suicide, but it's happened. I would never do it, but that's where my head was at.

Any feedback is appreciated. You all seem like a smart and lovely bunch, so I really just wanted to post and feel a little less alone. Thank you for reading.

[St George 2013]

I am so sorry for all that u are going thru and yes....you have come to the right place ! I really have no advise for u but others will come behind me that can help u figure this out.

I am so glad you've found the new dr....sounds like he cares and is going to find out what is going on with you. I too have dr hopped because I didn't have a dr that really wanted to help other than my PCP and bless her...she can only do so much. I have small fiber neuropathy in my feet and am in pain 24/7...sometimes severe and sometimes just annoying.

Are you on any meds now ?

Just know we're here to support u whenever you need it. You have been thru so much in such a short time.

Please keep us updated...we truly care about you

Debi from Georgia

[Wide-O]

Heya,

It's a turnmoil allright, and after a while nothing seems to make sense anymore. I know it doesn't help saying that, but most of us have been there in some form or another, so yes, we can relate to that.

Obviously, I'm not a doc, but it does indeed sound like your own body is starting to attack itself. It's impossible to diagnose from a distance if this is PN, but it might well be, and at the same time other things like arthritis (which can also be an autoimmune issue) might be playing as well.

What helps is that you share some of the blood test results with us, especially B12, folate, D3, thyroid etc. And if you have your old results, put them in a spreadsheet, and try to spot any anomalies. Also: family history; did anyone ever encounter the same or similar problems?

The best advice I can give right now is to become your own detective, to keep a diary of symptoms, and to not take crap from doctors who think it's all "in your head". And to keep on reading here... You will be able to figure out what ails you.

Good luck.

[fembot]

@St George 2013 -- The only medication that I'm taking is the OTC pain killers. My doctor doesn't want to prescribe anything for me until he can figure out what's wrong. I don't know if I have PN, but judging from everything that I've been going through and everything that I've researched and read here, I'm almost positive that I do. As far as anything else goes, I'm still very clueless. It's beyond frustrating, and I never imagined that anything would incapacitate me to a point like this. I've also been taking B12 supplements -- methylcobalamin (on an empty stomach) and alpha lopoic acid. I don't know if it's working or not -- it's only been a few weeks. Some days are better than others, but the bad days normally have me in tears. Thank you so much for responding -- it means a lot. I do intend to stay as active as I can here -- it's been very informative and comforting.

@Wide-O -- I was dumb and never got copies of my blood work results or medical records, and I doctor hopped so much (and my memory is still not what it used to be), that I don't even remember who I've been to. I'm pretty much starting from scratch again, but I intend to keep copies and records of everything. I won't make that mistake again. As for family history, I only know anything about my mother's side. She has PN (what seems to be mild, or she just hides it well), as well as her father (who developed it after taking a very big fall) -- there are thyroid problems, too. I cannot remember right now if it's a hyper or hypo issue, but I know it's there.

None of them have ever had any issues with food, I know that much -- so it was very difficult trying to convince even my mother that I was having problems with that. I suppose she was in denial or wanted to agree with the doctors who said it was food anxiety, in my head, etc, because it was a doctor saying it so of course he must be correct! Anyhow, it took a long time and me getting progressively worse for her to come around and acknowledge what was happening to me was ACTUALLY happening to me.

[mrsD]

Welcome to NeuroTalk:

Is your leg pain, in the muscles? the knee? A shooting pain like down the back? (Sciatica). Only in the thigh? It would help if you can describe it carefully. Is it aggravated by walking?

I'd try first off some magnesium lotion on that leg.
It is inexpensive, and at WalMart and Walgreen's now. (new)

http://www.mortonsalt.com/for-your-h...-epsom-lotion/
This can be a quick indication of what is causing your pain. Only
$5.98 for 8oz which will last a long time. Use only on intact skin, about a quarter's diameter rubbed in. You don't need alot at a time. Once or twice a day.

If you are gluten intolerant there is going to be possibly other nutrients you are not absorbing orally properly. Zinc, iron are also often low. You can get those tested when you go to the doctor.

That fever of 101 and over is high... in an adult 101 is considered serious. This suggests an infection, or possibly lupus.
Not all patients with lupus get fevers, but some do.
http://www.hopkinslupus.org/lupus-in...comorbidities/

Lupus + young female is what they will look for first.

I think you need to keep a log/journal of each day and your symptoms, and food intake. See if something pops up as a trigger. Doctors like logs/journals as it helps they decide on what to look for. You really need to get this looked at carefully... lupus can destroy your kidneys...so get to a doctor ASAP.

[fembot]

@mrsD -- The leg pain has been from both thighs all the way down to the bottoms of both of my feet. There have been times where it's gotten so bad that I can't even rest my arms on my thighs due to what feels like soreness, or I suppose they're just very sensitive to touch...? My knees are the only areas that have experienced extreme burning sensations, which has been happening since Friday. The spasms seem to only happen in my calves. The "bee sting" feelings have been very random in my legs. The cold weather really brings on the extreme pain. I can no longer walk for very long without hurting, either. I've tried to go grocery shopping (the cold sections are torture), or to any store, and I have to take many breaks just to be able to continue on. There really isn't any localized pain -- it's all very random and throughout both legs. I had one night where I couldn't have blankets covering my ankles/feet because they felt so heavy that I thought my ankles were going to be crushed -- or that's what it felt like, anyway.

I will look in to those lotions. Given what I just wrote above, do you think I should try one before the other, or should I just try both? And can I use them at the same time?

I'm supposed to be getting tested for lupus. I don't think that's one of the initial tests my doctor ordered when I was there last week, though. This is going to sound like the silliest question ever, but is lupus determined by a blood test or another test? I've been having random, "Well, maybe you have...!"s thrown at me by random people -- lupus, as well as Lyme, have been two of those theories.

[fembot]

mrsD, I did forget to mention that I haven't eaten red meat for about 9 hours. I do eat poultry and fish, though. I'm not sure if that has any bearing on anything, but my boyfriend thought I should add that in, as it could be important.

[mrsD]

I only linked one lotion.... you should start with rubbing it into your spasming muscles. You don't slather this on like moisturizer....just use little dollops...it smooths out quite a bit.

This reduces muscle cramping, reduces pain by blocking NMDA pain receptors and improves circulation to the area applied.

It is really nice and fast acting too. WalMart has it on the shelf, since spring. Some stores don't have it yet, so check their website and put in your Zip code to see if your store has it. If not, ask them to order it for you. Morton Epsom Lotion.

There are muscle inflammations that affect the thighs, and upper arms. Those can be tested for with blood work. Most lupus testing starts with blood work also.

Do you go camping....? walk in the woods, etc? You should get tested for Lyme also. There are Lyme related bacterial infections as well to check out.

[fembot]

Oh dear -- I meant 9 YEARS of no red meat, not hours!

I'm not an outdoorsy type of person. In fact, I have been camping or walking through the woods or any of that, really. I've had a single tick on me (that I've known about), and I was very young when that happened. I was tested for Lyme a year ago when I was in the ER from one of the fevers, but it came back negative. From what I understand, there are a LOT of false negatives with a lot of these tests.

The pain in my arms is in my upper arms, primarily. I do get it in my forearms, as well. Friday, I was so stressed out due to my job, that it resulted in even more pain -- my shoulders were aching and I just couldn't lift things any longer, or even push a door open. That was also the night that my knees were burning and walking became a huge issue. I feel like the stress is doing me in quicker. The whole situation feels ridiculous.

As for the lotion, I realized that after the fact. Sorry. But I will absolutely try it, especially for my calves.

[mrsD]

That's okay...I figured it out. I am used to typos online...been doing this for over 10 yrs.

People however with gluten issues, may not absorb the nutrients they consume because the intestine may be inflamed. So I'd still take the methylB12... as insurance.

Keep the log and write in your symptoms daily.... see if there is a pattern that appears.