Sunday, February 10, 2019

Painful Twitching and No Answers

Let me be clear from the start, this article may be nothing more than a vent-session for my brain.  I’m hoping that it will be therapeutic for me. If my editor doesn’t think it will help others then it will probably never leave this file. But I’m hopeful that it will be helpful, for me at least.  

I began dealing with this strange medical nonsense in February of 2015. We had gone to a local U18 hockey game (we love hockey) and had just gotten home to warm up and rest for the evening. I was sitting in the corner of our dimly lit living room the kids were snuggled on the couch and the TV was on. Seemingly out of nowhere, my body began to ache all over. Every joint was on fire. It hurt to even wiggle my toes! I went to bed that night with tears trickling down my cheeks, afraid to move.  

The intensity of it eased up within a couple of days, but my body continued to react in strange and painful ways. I would be typing a paper or an email and I’d have a sudden shooting pain in my wrists and elbows. I would be standing in front of my classroom, modeling a problem at the board for my students and my shoulder would begin to ache. My knees would throb randomly.  My fingers would ache and refuse to hold a pen or a sewing needle. This went on for months!

I went to my GP (general practitioner) who sent me for bloodwork. I went back after the bloodwork. He sent me to a rheumatologist. Now, I try not to bash people publically. I try to give everyone the benefit of the doubt, I try………..but this woman was rude! She was outright dismissive, and basically said my GP didn’t know what he was talking about and wasted her time by sending me there. She did send me for a bunch of tests, though. Those tests all came back negative. I was told that office could do nothing for me. “If you’re still having problems, go back to your GP.” So I did. Then I was off to another specialist.

Meanwhile, the aching did not stop. It did alter a bit, the intensity gradually dropped, the frequency of the incidences decreased some as well. But then the burning and twitching started.  A burning sensation, through what felt like my lymph nodes, would spread from my armpit into my bicep and forearm and then dissipate. The same sensation would seep through my breasts as well. It only lasted seconds but would happen several times a day.  

And the twitching…. Picture newborn babies and the adorable, jerky little bouts of their arms and legs as they try to master the movement of their muscles. Only mine was completely involuntary, and not even remotely cute. Mostly my legs then, would twitch, and kick, spastically jerking about. My husband would wake in the middle of the night thinking our bed or the entire house was collapsing. My joints would ache and throb, my arms and breast would burn, then my limbs would twitch. The daytime aches were getting annoying. The interrupted sleep was wearing on us both. I was exhausted, achy and grumpy.The kids’ after school, dinner time and bedtime routines were suffering--I couldn’t give them the attention they needed and deserved. It was all so damn frustrating!  

Finally, after nearly six month, a doctor gave us a diagnosis.  “Reactive Arthritis”. A relatively rare phenomenon where the body’s immune system attacks the joints in response to a virus. A bout of the stomach bug had been through the house a few days before this all started, so it made sense. Something close to the following dialogue took place:
What can we do about it?  

Nothing. You’ll have to wait it out. It usually only lasts three to six months so you should feel better soon.  

Will this happen every time a virus comes through the house?  

I don’t know, you’ll have to wait and see. If it happens again call us……..

It did happen again. Repeatedly. I guess I was appeased by giving this nonsense a name. I guess it gave me a sense of control (false control, but a sense of it nonetheless). I lived with it.  We muddled through. Most of the ‘flare-ups’ were short lived--a couple of days here and there. The twitching was mild enough that we both learned to sleep through it, most of the time anyway.  

Then a year and a half later, a major flare up. It was significant from the beginning. Hopeful it would pass like the others had, I waited a few days. It got worse. Much worse. So I called like they said to.. Unfortunately, “these symptoms are different from what you had last time so we will have to start over, can you come in next week?” Are you kidding me? Ok, deep breath. Yes, the symptoms are somewhat different--there are more. The burning was more pronounced, accompanied by a creepy crawly sensation--so hard to explain. It wasn’t on my skin, but IN my arms and legs. Yes, the joints still ached too, but it wasn’t the first complaint I listed. Trying to find words to describe these sensations, it was all too much. Schedule the appointment.  

The symptoms continued to pile on. It all felt the same as before, just worse, more intense, more of everything. Now there was an itching too. My whole body. I had claw marks. The twitching was overwhelming both day and night. I couldn’t sit still. I couldn’t sleep. I apparently couldn’t get help either. We went back to the doctors that had at least given us an answer before. This time we were met with apprehension. After the initial intake of questions, they practitioner left.  She returned a short while later with a colleague. They both seemed on edge. They kept their distance, stood between us and the door. Hesitant, nervous, “there’s really nothing we can do for you”. As if expecting an argument “if you’re ok with this, we’ll see you out”. I was dumbfounded. In the car, I turned to my husband: “what the hell just happened?” It was truly a bizarre experience. The best explanation we could come up with is that they must have thought we were there looking for narcotics. Which is laughable really, I hate to take medications--rarely even use ibuprofen or cough medicine.  

So there I was again, back to square one. Itchy, twitchy, achy and cranky. Apparently now perceived to be drug addicts, we crossed yet another doctor off the list of possibilities.  Thankfully, in the weeks to come, the symptoms dissipated much like before. The itching eased up. The aches became more mild. The burning and twitching well, they went back to being mostly tolerable.  

Another year went by with manageable symptoms. They never totally went away, but they were sporadic and comparatively short lived. Then another major flare up hit me. This time it was back to my GP--by the time they could get me in, it had subsided. That flare up was shorter and not nearly as intense as the last one. However, in the midst of it I had asked my husband to push me to get answers. I had to stop giving up on finding a diagnosis or treatment as I had after the previous episodes. I had taken comfort in feeling better, but I was tired of starting over every time there was a major episode.  

So, off to yet another specialist we went. This time a neurologist. I personally think it is an autoimmune response (I have already have two other autoimmune diseases--Hashimoto's, and Raynaud's), but I have yet to find a doctor who specializes in autoimmune disorders other than a rheumatologist.  

That was five months ago. I felt like the doctor was honest and compassionate. He did not think it was neurological (nor did I). He did, however, leave me with an order for bloodwork and instructions to go get it done the next time I had a flare up.  

The most recent episode started a week ago today. Again, with the achy joints, the burning sensation, and twitching--ugh the twitching! It overtakes my legs and arms now. I even tried ibuprofen before bed to see if it helps. NOPE!  I went for blood work on Wednesday morning. I was up at 6:30 this morning--couldn’t sleep anymore with the twitching. I found an email from MyDent Chart. All of the bloodwork (it was 13 separate tests) came back negative. To be honest, I’m currently oscillating between relieve, fear and frustration.  

Obviously I’m relieved that there is no evidence of the debilitating things they could have found. However, I am still very frustrated--there has to be a reason my body keeps doing this. It takes a toll on me and my family, and I’m tired of feeling like this--it sucks! The worst part for me is probably the unknown. I’m glad they haven’t found anything really bad yet. They began looking at things like lupus, and even the possibility of another cancer (yes, that fear is always lurking in the background). Did you see that, I just re-read this paragraph and realized I said yet--that’s my subconscious--my fear.  I don’t rationally think it’s anything long term terrible. I do think it’s an autoimmune response, hoping it might be linked to something I have eaten. I just wish I/they/we could figure out what causes it so I can avoid it, or control it, or at least know when and why it’s going to happen.

In the meantime, if you see me, I’ll try not to be a bitch, I’m just really tired of the achy twitch.

Wendy Bacon doesn’t want to be twitchy...or bitchy. She just wants to feel better.