More tests. #lupus

The short version:

I need a hug.

The long version:

I had an EMG/Nerve conduction study in my arms last week from a new neurologist, and the same test on my legs today.  During the first part of the test, the technician used a two-pronged device on several locations on my arm that sent electric charges through my nerves and also recorded the activity on the computer. It didn’t hurt really, just felt strange. She said it would feel like hitting your ‘funny bone’ and it kinda did, it just didn’t hurt like that would. During the second half, the doctor came in to do the test with the needle. He said it was like an acupuncture needle. I happen to think it was larger than that, but that’s just me. He inserted the needle into various points and sent an electric charge through it which also recorded nerve responses on the computer. The readings look sort of like the readings on a heart monitor, peaks and valleys. The legs were more painful than the arms. I wouldn’t even describe the arms as ‘painful’, just strange. For some reason, certain points on my legs close to me feet or where the nerves traveled to my feet were painful. It wasn’t unbearable, though. The needle half of the test was actually the easier part.  I’ll probably get the full results of both tests sometime next week. If both tests come back normal, that means I have no damage to my peripheral nervous system. From there I can investigate other causes to my neurological symptoms like central nervous system or spine.

My main complaints are pain and weakness. I can’t believe sometimes how I can just hurt. The Benlysta isn’t helping that at all. The weakness and clumsiness is bad, too. Sometimes I just drop things. My muscles let go. I’m noticing a gradual worsening of motor skills in my fingers. I can’t play guitar or type without the frustration of my fingers going all over the place (or nowhere), I can’t draw a straight line without my hands freezing up and getting ‘stuck’. They never do what I want and know in my head that I’m able to do. It’s incredibly frustrating to not be in control and not have an explanation yet.

Saturday I ran a few errands, and by the third store, I was in so much pain I wanted to cry. In between store #2 and store #3 I didn’t feel too horrible, or else I wouldn’t have gone in to the third store. I was a little tired, and a little in pain, but it was typical. It can hit so quickly. I often forget how bad it can get since I spend most of my time doing things that don’t expel quite that much energy. The benlysta isn’t helping that, either. And It’s not really a pain that pain killers help. I guess only people with lupus would understand. There’s something about it that’s so incredibly taxing. It’s like that one COPD commercial, an elephant might as well be sitting on me. Every movement becomes a Herculean effort. And you’re just suddenly overcome by this “If I have to feel this for one more moment, I’ll scream” or something like “I no longer wish to continue standing up.” And for me, it’s usually accompanied by some kind of hot flash/sweaty/feverish thing. Pushing through it is really difficult, and it usually takes a day for my body to recover after. When it happens it of course makes me extremely grumpy, but also I feel like my concentration has been completely zapped, so it makes that store trip practically useless since I can’t seem to even differentiate between my ass and my elbow, let alone whatever the hell it is I went in there to buy.

^This kind of problem I have poses a huge obstacle with my social life. No one my age gives a fuck, so they’re not going to make accommodations for me. I can’t do things other 20-somethings do. I can’t run around bars and stay out late and get hammered, and be at loud shows til the witching hour, and that’s pretty much all people my age are interested in doing. Me? I look forward to going to bed. It’s easy enough for people just to leave me out because I’m such a wet blanket on their plans. So I’ve basically stopped socializing, I’ve learned to be ok with it. Honestly, I got tired of being disappointed. Being lonely hurts less. 

My heart palpitations/shortness of breath/fatigue have been particularly bad lately. I haven’t been able to eat a meal without getting a pounding heart that lasts for hours after. The only thing I have to deal with it is Xanax, which I s’pose is odd since it’s not anxiety, but it is a little helpful. If I didn’t take xanax my heart would pound all day. No one can figure this one out either and I’ve been dealing with it for a while. It’s felt like an eternity. I’ve briefly talked about beta blockers with my doctors, but since my blood pressure isn’t high, even when my heart is going crazy, it just seems like it could cause me to have low blood pressure.

The neurologist who did my test is also sending me home with an at-home sleep study machine to test for sleep apnea. Part of me wonders if this is the cause of my heart palpitations, and possibly some of my ‘brain-fog’ issues. I know I have sleep apnea to some degree, because I have caught myself not breathing and ‘jolting’ awake, sometimes with a headache, sometimes gasping, sometimes heart-pounding. Certain medications make it worse, too. I can’t really take anything that ‘makes you drowsy’ before bed because it seems to make me stop breathing more noticeably. Occasionally I’ll have a night where I have it bad and so I just stay up. It feels pretty scary, and there’s no point in trying to sleep if you’re just going to wake up over and over because you stop breathing. I don’t know how often it happens exactly, and if it’s enough to warrant a CPAP machine. It would be nice if some of these symptoms could be resolved as easily as wearing a breathing mask at night. I’ll do just about anything at this point. I’m pretty desperate. I’ve altered my eating habits in hopes of weeding out any toxins and allergens that could be making things worse. Preservatives in particular, which really aren’t good for anyone, are a huge trigger for me. It’s a pain in the ass because they’re basically in everything that isn’t made by my mom (<3 u mom). That means no canned or frozen food, or powdered things, or meals from a box. It also means no restaurant food, because you really don’t know what bullshit you’re getting from there. I haven’t been able to exercise, which has been pretty terrible, considering I have an athletic personality and would probably be doing all sorts of sporty things if not for the fact that I can’t catch my breath (among pain and energy).

All in all, I continue to be frustrated and mystified by the amount of time going by without an explanation or treatment. This shit takes forever. That’s the hardest part I think, the waiting. For a doctor, a month has gone by, but for a patient, it’s more like 43,829 minutes.



  1. Hi Jill, I forgot to ask you last time – Was the Lyme disease test you had done an ELISA test? That test has a notoriously high false negative rate. I would seriously consider going to a LLMD. There are plenty of them in your neck of the woods. There is a test done in California from IgeneX Laboratories called the Western Blot IGG/IGM which is far more reliable than the ELISA at detecing Lyme . There are many other Bacteria and Viruses that can cause an Auto-Immune attack on the body. If you would like more info please don’t hesitate to email me at – ( )

  2. Are you sure your Addison’s is under control? Jane Austin wrote about the severe pain and fatigue with her Addison’s disease.
    I had bizarre symptoms with sleep apnea, and the pain is worse when I don’t sleep well. I have heart pounding that is controlled by clonazepam and I don’t feel anxious, but for some reason my body thinks that it is anxious. A nerve problem I believe. Ativan and the like do help with nerve pain, so I found with chemotherapy. Speaking of chemo, none of these are bizarre side effects of the Benlysta are they? I feel for you. I was the same way when young, although I didn’t have a diagnosis back then. But it does separate you. Is there a lupus or chronic pain support group you could tap into? You are a resilient person, but time wears everyone down.

    • It has crossed my mind the past couple weeks that maybe my Addison’s is doing something. For the most part I don’t feel very “addisony” and I guess I can mentally separate the symptoms from my other illnesses since the addison’s was the first to come about. I have raised my cortef dose on my own a little, my endo is ok with me “feeling it out”…I was having a period of time where I was having bad chills episodes every morning like clockwork, and when I started more cortef, it went away. My endo checks my thyroid every time I go in so about every 3-6 months and it’s always come up normal. Since raising my steroids, my pain doesn’t seem any better. I sometimes wonder if I should be on pred for the pain but I and my doctors seem reluctant to start that mess. I also think my heart palps/anxious-type symptoms could be a nerve thing, I wonder if I have neuropathy or compression on the vagus nerve, since I also have gastroparesis-like symptoms. When I eat I get heart palps now and I feel full quickly. It comes and goes, too. Some days, I can eat a heavy dinner and be fine, and some days I can’t get through a third of my plate without feeling filled-up. I’ve wondered about the anti-seizures for pain. A lot of the weird symptoms I have I’ve had since before the benlysta. The main side-effect I have from the benlysta now though is nasal congestion. It’s pretty bad. I’ve always had allergies from weather/pollen but this wakes me up at night and makes me nuts during the day. I’ve used OTC nasal spray, and claritin-D (which I use sparingly because of the heart palps) and my primary wrote me a scrip for viramist, so we’ll see how that goes.
      I’ve been talking on facebook support groups for a while for lupus and addison’s, and there’s one specifically for benlysta, too which is nice. I haven’t been to any in-person support groups since they tend to be a bit of a drive from where I live. I live right between Los Angeles and Santa Barbara, but they are both still over an hour each way from my house, so it’s been hard to find anything local. The online groups have been really helpful though, They are definitely a good replacement for when i can’t drive out.

      • Prednisone is an amazing drug, takes my pain away completely and I feel great on it. But it raises BP and causes big carb cravings and weight gain plus infection risk. But a trial (only need the 5 day taper pack) is all you need to sort out if your pain is inflammatory in nature. I go on it now and then when I need a break for the 5 days, especially around vacation.
        A friend of mine has gastroparesis from Lupus. Tough situation. I belive she uses Ativan and several other meds to help with this condition. And they do help her.
        Too bad about the nasal congestion! Not a quick fix for that and it cant be helping sleep apnea issues.
        Im glad you have found some support, your case is overwhelming and I cant imagine how you cope otherwise.

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