I have attempted to write this for a few weeks, but my concentration is limited and patience short. Since reporting all of these issues to my PCP last summer, I figured I’d be doing great by now, living a normal life. Boy, was I wrong! At this point, I am in fear that I may never have my life back, and whatever is left is downhill from here.
I still can’t bend, twist, or walk farther than a few hundred feet, the pain is spreading, and new symptoms have arisen. The upper left shoulder/side pain and numbness subsided a lot, but not altogether, and the rib pain and torso “tightening” remains. When I googled this unusual symptom, the only thing that explained exactly what I am experiencing is called the MS hug.
As soon as I read about the MS hug, I felt this is it, and I stopped looking into diagnoses further. This is the feeling I have been trying to explain to my doctors about the tightness around my body where my bra strap would be and all along my left ribs. This must be what I have, because nothing else explains all of these crazy symptoms, right? It would explain why I don’t feel well for weeks or months at a time without any fevers or explanation from doctors. But now the symptoms never go away, and it really worries me that I may have permanent damage.
I still feel tingling now and again in my shoulder and arm that is now running up to my face, like little jolts sometimes or other times just numb like when Novocain is wearing off from the dentist. Until I began writing down every single thing going on with my body, I realize I have been dealing with this for years and years and years!!! Living with it for this long, I am used to it, but I’m not used to the intensity and longevity of the pain.
I feel random sensations throughout my body, all day long, from burning to tingling. The sensations last anywhere from mere seconds to minutes to hours, and then they suddenly disappear. There is no rhyme or reason to any of it, which makes it all the more frustrating and maddening. Since keeping a journal of symptoms for the past week, I have experienced some of these symptoms before, but they were random and never lasted. The symptoms may only last seconds, minutes, hours or an entire day. I may wake up feeling amazing, then exhausted within a few hours.
It took hours of poring over notes, journals, and old blogs to create a timeline of symptoms… some of them since 1993! I had my first experience with extreme vertigo at a Guns n Roses concert with my first husband. It happened suddenly and eventually subsided, but I recall having a horrible migraine afterwards. There was no explanation for it, and I don’t remember going to the doctor. Also around that time or shortly after, I started noting an all-over body ache that I could only describe as flu-like, because of the deep achy feeling. But I wasn’t running a fever, and the aches wouldn’t go away.
I was a twenty-one-year-old newly divorced mother trying to work a full-time job and attempting to deal with some strange illness that no one understood. I was told by two different doctors over a 10-year period that I had chronic fatigue syndrome and fibromyalgia. But I’m not sure that’s what I’ve had all of these years, because the symptoms of those two diagnoses don’t match.
Several times I have described this all-over body feeling “like my blood is on fire,” even written in a journal entry. However, for some reason over the years, I blamed this on allergies. (I suppose some medical professional told me that’s what it was when I explained my body was hurting 20 or 30 years ago.) I finally know that this is not a result of allergies. This is definitely a nerve issue, and there have been other symptoms throughout the years that all tie to multiple sclerosis.
While I was attending a university, I had a sudden “stinging” sensation in my lower legs. It felt like I had bugs biting/stinging under my skin, and that lasted overnight. I was bawling in pain, applying lotion and different things to attempt to make it stop. It went away as quickly as it arrived, no apparent explanation. It happened again another time but didn’t last as long. Without health insurance, I never reported these symptoms to a doctor. I have had a similar sensation in my lower legs within the past few years, usually when I lay down to sleep, and I have always attributed this to nerves.
I have been to the ER six times in the past 10 years for the same recurring symptoms that still haven’t been explained – vertigo and tightness in the chest. One morning in 2009, I woke up with vertigo. It went on for three days, but only in the morning. By the fourth day, it didn’t go away, and I couldn’t walk without holding onto walls. I specifically remember the trip to the ER in 2013 when I was on my way to work. Because I felt like my lungs were being squeezed, I thought it was asthma. The ER doctor said it was a bronchospasm. Those symptoms happened a few times, and sometimes an inhaler helped with the breathing aspect, but not the chest pressure.
Last year, I blamed the deep exhausted feeling on my job. But after it ended in October, I felt worse and worse. Even with eliminating alcohol, I still had no energy at all, and I had no desire to do anything I normally do. I knew this was more than just depression, because I wanted to do things mentally but didn’t feel well enough physically. As of this month, I am sitting on exactly a year since I stopped feeling well altogether, for any days in a row. But it’s actually been a lot longer. I haven’t felt back to being me since I had the hysterectomy two years ago, and the un-wellness isn’t hormonal. It may be even longer than that.
I use the brief windows of “feeling good” to get things done, like errands and housework, and normally easy everyday things. Sweeping is very painful, because it’s kind of a twisting motion that sets off nerve pain. A couple hours out of the house to run errands usually exhausts me, and the pain starts. Sometimes I get the stabbing pain walking into a grocery store, but now that I know it’s not a heart attack, I figure I’m not going to fall to the floor just yet. Standing in the kitchen for 30 minutes causes terrible stabbing back spasms, so I stop to rest. Physically, I’m limited from standing or sitting for more than 30 minutes before the pain starts, so I’m constantly moving around. I never expected this pain to last so long, nor did I expect it to spread throughout my body. All I thought this was a year ago was a pulled muscle.
At this moment, I am waiting for a phone call that may take up to three weeks just for an appointment with the neurologist. Did you read that right? The phone call itself can take up to three weeks, because that’s how the system works. That phone call will determine when I get an actual appointment with the neurologist. Now we are running into the holidays, possibly into 2022 before I get a diagnosis. Nothing happens quickly when it comes to the government, and that includes health services for veterans. It makes me wonder how many people have died or ended up in worse situations, because of the VA’s bullshit red-tape policies? Doctors can only do so much when their hands are tied by bureaucracy. And Americans are at the mercy of a shitty healthcare system that forces them into bankruptcy or death without health insurance. What a joke!
In the meantime, I am unable live a normal life, and I’m not exactly seeing a light at the end of the tunnel. Being unable to accomplish things makes me feel inadequate, so this definitely affects my mental health. A lot of my work requires reading or other types of concentration and thinking skills. Even reading a magazine is useless sometimes, so I do other things to ease anxiety, because I’m not a person that can just sit around and do nothing. I can’t focus long enough to take on more work, which is what I was aiming for when all of this happened. Right now, paying rent is my primary financial goal. I can work around everything else. Being self-employed makes it financially difficult, because I have no safety net. Without a diagnosis, I cannot look into disability. I feel completely fucked.
I have so many questions, and I wonder every day, what’s next? Will I ever be able to walk the beach again? Kayak? Hike? Ride a bicycle? Because the thought of not being able to is super depressing. Will this disease quickly progress and consume my body? Am I going to shrivel up from this disease and suffer miserably?
I don’t know what to do, but I really feel like these might be the last days I have to work with. And what I have known as normal is all behind me.
Bureaucracy seriously sucks. I hope it doesn’t end up taking too long to get the neurology appointment.
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I could either wait four months or see what a doctor outside the VA has to offer. I’ve already waited long enough.
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