For years I was one who tried to suffer in silence and push through the pain, rather than share my ailments with anyone who will listen. But I started blogging as an attempt to verbalize life with fibromyalgia and share those things that I find helpful or inspiring in my every day life. As I mentioned in my last post, I have been absent from here for a few months as I try to deal with a new pain in my neck. Literally.
I had surgery five years ago to fuse a disc in my neck, and I am again suffering. Even though my neck surgery gave me immediate and lasting relief from the pain, headaches, spasms, etc., I haven’t been completely pain free. My doctor says that for every year post surgery your chances of degeneration on the discs adjacent increases about 5-fold. I recognize that I will have some level of chronic pain for the rest of my life between fibromyalgia, chronic lower back pain, and my neck. But the severity of the pain and side effects has become unbearable the last few months.
Symptoms and Treatments
The neck pain became acute in January after staying at my parents house for a week on a new bed and pillows (translation = hard). I didn’t sleep well and by the end of the week I was a wreck. Coming home from vacation in pain doesn’t produce the normal relaxing results a vacation should give you.
Usually after a few days of pain patches or my TENS or even a massage, the area relaxes enough for the pain to go away. Not this time. On more than one occasion, I have put on the neck brace I still have from post-surgery, to try to give a little relief to the area, almost like a decompression or traction.
Here is a list of the various symptoms I have experienced over last three months:
- Neck Pain
- Shoulder Pain
- Muscle Spasms in neck and shoulder
- Radiculopathy (numbness, weakness, pain) in right arm and hand
- Right arm and hand are colder than left
- Knots behind my shoulder blades
- Muscle spasms in jaw
- Pins & Needles/Tingling (like an extremity has gone to sleep) in head/jaw/neck/right shoulder/right arm
- Twisted feeling in shoulder
- Dizziness and loss of balance, especially when craning neck to look up
- Pressure, like someone is squeezing my head
- Spots/flashes before my eyes
Two weeks of nausea and waking up almost every night in pain. As I said, I typically push through it, but I have also come to understand the difference between the pains my body suffers, what I can tolerate, and when there is a problem. So I finally went to see my doctor.
Visiting the Doctors
I asked my primary care doctor to order an MRI. I know my body. I have been here, done that. He refused, saying he would get in trouble for ordering it. Is this really what our medical professionals have been subject to by insurance companies? Is our healthcare system that broken? They don’t have time to really explore and treat us.
He prescribed muscle relaxers and a steroid pack, and told me to see my back specialist for the MRI. And then as I am walking out he tells me the steroids aren’t really good for my osteoporosis. I just can’t win here.
An MRI showed a 3 mm (about 1/8″) perineural cyst right where my fusion is. Awesome, since the doctor said there should be no movement in that area, which is usually how a cyst would form. He recommended epidural steroid injections in my neck. I am a bit hesitant right now. I want more information to make an informed decision. So in the interim, I tried the oral steroid pack. I got pain relief for two days and a whole lot of awful side effects for six days.
Google is My Friend
I know doctors say that we shouldn’t search our symptoms on the internet. But given the amount of time they are allotted to really spend with us, can they really blame us? The medical system is broken in my opinion. And this isn’t the first time I have researched and assisted in my own diagnosis. I did it with both my endometriosis and my fibromyalgia. With my neck I spent over a year trying to get answers, carrying around a 2″ binder full of test results and history.
My internet searches on perineural cysts in the cervical disc area of the neck yields a couple of possibilities and little information (they are supposed to be mostly asymptomatic). The doctor says the pain is likely due to inflammation around the cyst, not the cyst itself. My research indicates that there’s about a 50% success rate with the epidural steroids. Not great odds in my opinion. I’m not flipping a coin here, this is my neck and spinal cord we are talking about. I believe a second opinion is in my best interest, so I will likely be contacting the neurosurgeon who did my neck surgery to review the MRI results.
In 2011, about a year before my neck surgery when I was trying to explain the headaches, dizziness, pain, spasms, etc., I was told I had a 7 mm (about 1/4″) cyst on the pineal gland in my brain. Again, information on that condition also says those are typically asymptomatic. But this gland is responsible for producing melatonin, which regulates our sleep. I have had sleep issues for years, which may be a cause or a result of my fibromyalgia. So with a cyst in my brain and at least one in my neck, along with the myriad of symptoms I have experienced over the years, it’s hard not to think there is a correlation. Cause and effect. Yet I am forced to convince the medical profession that there is something systemically wrong and that it’s not in my head.
So there it is. When I get home from a day of working while in pain, I have just been tapped out. No ideas. No energy. Haven’t felt like writing. It’s all I can do to get dinner on the table and take care of myself. And then there’s all that googling. So now I am back to being my own medical detective, taking my care into my own hands.
There is no one-size fits all approach, and we must bear some of the responsibility of educating ourselves, caring for our bodies, and being acutely aware of what our body is telling us. While a firm believer in healing myself, sometimes nutrition, exercise, and attitude just aren’t enough. In the last few months I have strayed a bit from my anti-inflammatory diet and certainly haven’t felt like working out. But now it’s time to at least get that diet back on track.
I can relate to Matthew McConaughey’s character at the end of Dallas Buyers Club. He was experiencing severe ringing in his ears and wandered out of his truck, walking around an intersection in a stupor. The pain. The incoherence. The suffering. The movie depicted how he tried to take his own medical care into his hands and challenge what the doctors/pharmaceutical companies were trying to prescribe him. And so, I will be sharing with you as I try to some of the same, to find some answers and get relief from this pain.
Have you had similar experiences with your health issues, where you have to do your own medical research? I would love to hear your success stories!