You are a medical anomaly, Alexis

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About 100 million Americans suffer from chronic pain, defined as pain that lasts longer than six months. Chronic pain can be mild or excruciating, episodic or continuous, merely inconvenient or totally incapacitating.

With chronic pain, signals of pain remain active in the nervous system for months or even years. This can take both a physical and emotional toll on a person.

The most common sources of pain stem from headaches, joint pain, pain from injury, and back aches. Other kinds of chronic pain include tendonitis, sinus pain, carpal tunnel syndrome and pain affecting specific parts of the body, such as the shoulders, pelvis, and neck. Generalized muscle or nerve pain can also develop into a chronic condition.

Chronic pain may originate with an initial trauma/injury or infection, or there may be an ongoing cause of pain. Some people suffer chronic pain in the absence of any past injury or evidence of body damage.

The emotional toll of chronic pain also can make pain worse. Anxiety, stress, depression, anger, and fatigue interact in complex ways with chronic pain and may decrease the body’s production of natural painkillers; moreover, such negative feelings may increase the level of substances that amplify sensations of pain, causing a vicious cycle of pain for the person. Even the body’s most basic defenses may be compromised: There is considerable evidence that unrelenting pain can suppress the immune system.

Because of the mind-body links associated with chronic pain, effective treatment requires addressing psychological as well as physical aspects of the condition.

The symptoms of chronic pain include mild to severe pain that does not go away, pain that may be described as shooting, burning, aching, or electrical and a feeling of discomfort, soreness, tightness, or stiffness. Pain is not a symptom that exists alone. Other problems associated with pain can include, fatigue, sleeplessness, withdrawal from activity and increased need to rest, weakened immune system, changes in mood including hopelessness, fear, depression, irritability, anxiety, and stress and disability.

Treating chronic pain can be challenging, and it may take several types or combinations of treatments before you find relief. It’s a common theme for chronic pain sufferers to A. go through several different treatments before one, or more commonly, a combination of treatments helps, or B. nothing seems to help whatsoever. For me, I have been both lucky, AND unlucky – I take muscle relaxants for sleep, narcotic medication for some pain relief despite the side effects, and I also receive additional treatments. The pain is somewhat manageable, but I do wish more could be done.

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About five years ago (after a six month wait) I was able to get into the Centre for Pain Management in downtown Toronto, where I now see an amazing pain management specialist (I saw two doctors at that clinic prior to her and they had horrendous bedside manner). In addition to the pain medication she prescribes, she also injects me with about 20-30 needles in my neck, shoulders and back on a weekly basis with lidocaine (also known as trigger point injections), which numbs a bit of the pain for a short period (30-50% numbed for 3-5 days).

Trigger point injections (TPI) are done by introducing a needle with anesthetic (lidocaine or corticosteroid) into the center of the trigger point in order to release the tightness and pain. After the injection, the pain is eliminated because the pain cannot be processed. Injections are given in a doctor’s office and are a quick and relatively painless process.  This treatment can be done on several locations of the body during one visit. TPI is used to treat different muscle groups including arms, legs, lower back and neck.  TPI is often used to treat fibromyalgia and tension headaches.  It is also used to help treat myofascial pain syndrome. Not all trigger points need to be injected, as some will respond instead to physical therapy, massage, or stretching.  But for those that are chronic trigger points, TPI is an option that can alleviate pain and pressure.

My boyfriend stopped in after work one day when I was at the pain clinic having my weekly trigger point injections, and he looked like he was going to keel over and vomit and/or pass out while watching the needles go in. Poor guy! This is the norm for me, whereas for him, this was NOT a normal weekly occurrence!

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She has also tried cortisone injections on me, however, due to the horrible side effects of this type of drug, she can only do it yearly, if that, especially since I’m young. At first I felt a bit of relief from the cortisone, but this only lasted a couple of months.

Up until April of this year, I was also seeing the massage therapist in the clinic on a weekly basis, and the chiropractor 1-2 times per week. Unfortunately, because I’m not working right now, I do not have medical benefits. It’s pricey enough having to pay for my meds, let alone the additional treatments. In the past I have paid out-of-pocket for a private medical plan, however, at this point, I have decided not to. The massage therapist did a good job of trying to get at the muscle spasms in my back, however, he never really could get rid of them. The chiropractor was able to get my neck and back moving a bit better, but not enough for me to notice a decrease in my pain.

About six months ago I mentioned to my pain specialist that although I have been getting these lidocaine trigger point injections for five years, and they do help with some of the pain, they really don’t do much for the severe thoracic (mid-back) pain, most likely caused by my scoliosis. She suggested that I see her colleague at another Pain Management Clinic for radio frequency ablation.

She got me into the clinic very quickly (I had an appointment the following week up in North Toronto). I walked into my appointment, sat down in front of the doctor, he asked about my pain, and right that minute he and the nurse gave me a cervical (neck) epidural.

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Thoracic epidural steroid injections are administered to relieve pain in the mid-back and shoulder-blade area caused by pinched or inflamed nerve(s) in the thoracic spine. Conditions such as herniated discs, spinal stenosis or arthritis can compress nerves causing inflammation and pain. The injection of medication into the surrounding area helps to decrease swelling of the inflamed nerve(s). Although uncommon, risks of the thoracic epidural steroid injection may include infection, allergic reaction to the medication, spinal headache, nerve damage and prolonged increase in pain.

I had four cervical epidurals done over a period of a few weeks, which somewhat helped my neck pain, however, it was doing nothing for my back pain (which is the reason why I wanted to see him). I spoke with the new pain specialist on several occasions about my back pain, and he had thought the cervical epidural would drip down and help that pain, which it did not. I kept “bugging him” and asking what he could do for that pain because it was severe and debilitating. After a couple of months, he gave me an epidural a bit lower than my cervical, and he was hoping this would drip to my thoracic area, which, surprise, surprise, it did not. I then bugged him even more about this pain, and he seemed very hesitant to want to inject anything near that area. I then did my research, and apparently it can be dangerous to inject in the thoracic area due to your heart and lungs being there. After a few other types of injections (which my other doctor had already done over the years) he suggested I try a facet block.

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Facet joints are small joints at each segment of the spine that provide stability and help guide motion. The facet joints can become painful due to arthritis of the spine, a back injury, or mechanical stress to the back. 

A cervical, thoracic or lumbar facet joint injection involves injecting a small amount of local anesthetic (numbing agent) and/or steroid medication, which can anesthetize the facet joints and block the pain. The pain relief from a facet joint injection is intended to help a patient better tolerate a physical therapy routine to rehabilitate his or her injury or back condition.

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So, the next week he did the facet block in the thoracic area (five needles), and unfortunately, that did not provide any relief either. My main pain management specialist kept bugging me to ask him for the radio frequency ablation, so, once the epidurals, facet blocks, and other injections didn’t help, I asked him about the radio frequency ablation. He refused to do it, and would not provide me with an explanation as to why he would not perform this procedure on me. I told him I had done my research and thought this may help, and he disagreed. I left his office in tears due to frustration and anger, and decided I would never see him again due to his horrendous bedside manner (more about doctors and bedside manner in future posts). I am now waiting to get into Women’s College Hospital where they may be able to perform this procedure on me. The wait time is three to six months – story of my life!

Radiofrequency neurotomy (also called radiofrequency ablation or lesioning) is a minimally invasive procedure that can provide lasting relief to those suffering from facet joint pain. Multiple clinical studies show that radiofrequency neurotomy significantly reduces pain severity and frequency for 1 to 2 years in the majority of patients.

Radiofrequency neurotomy involves applying heat to certain nerve pathways to “shut off” the transmission of pain signals to the brain. It is performed on an outpatient basis and requires only local anesthetic and mild sedation, alleviating the possible complications of open surgery and general anesthesia. It has a high success rate and low complication rate. 

This procedure sounds like it could potentially help me – god willing!

The massage therapist has basically stated that my body is a complete medical anomaly, and he really can’t figure out why all of these treatments are not working on me, nor can any of the other doctors. He has stated on several occasions that I should be used as a study for medical students going through school to become doctors. This is NOT something a sick person wants to be hearing from a medical professional (I’ve heard this before from other doctors as well!)

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I have also tried chiropractic adjustments for long periods of time, and although it helped me feel a bit less tight, I did not notice a significant decrease in pain. I do find that stretching, exercises, ice, heat, and a special topic pain cream do help a bit and these are things I can do at home, rather than spending 45 minutes and $50 at the chiropractor twice per week without medical coverage to pay for it. In addition to chiropractic, I have seen a osteopath, physiotherapists, acupuncturists, and the list goes on with no luck.

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As I mentioned in my page about my Anxiety and Depression diagnosis, I spent quite a fair bit of time speaking with a clinical psychologist in order to help my mental illnesses, however, she also provided me with pain management techniques. She taught me CBT (cognitive behavioural therapy) techniques to help manage the pain, which definitely somewhat helps.

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Cognitive behavioural therapy (CBT) is a form of talk therapy that helps people identify and develop skills to change negative thoughts and behaviours. CBT says that individuals — not outside situations and events — create their own experiences, pain included. And by changing their negative thoughts and behaviors, people can change their awareness of pain and develop better coping skills, even if the actual level of pain stays the same.

 Cognitive behavioral therapy helps provide pain relief in a few ways. First, it changes the way people view their pain. CBT can change the thoughts, emotions, and behaviors related to pain, improve coping strategies, and put the discomfort in a better context. You recognize that the pain interferes less with your quality of life, and therefore you can function better.

CBT can also change the physical response in the brain that makes pain worse. Pain causes stress, and stress affects pain control chemicals in the brain, such as norepinephrine and serotonin. CBT reduces the arousal that impacts these chemicals -This, in effect, may make the body’s natural pain relief response more powerful.

I am now at a point where if I either am not able to get in for the radio frequency ablation, or if I do get the procedure done and it does not work, I will have gone through basically every single pain treatment available for me at this point. This is a very sad  and scary reality to face, especially at the age of 31.

Below, a picture of my older and brother and I at a cousin’s wedding – this is the face of someone who tries to remain happy and optimistic 🙂

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Have any of you tried any of the treatments listed above for your pain? What has your experience been like? Have you tried radio frequency ablation? Do you currently see a doctor, or doctors at a pain clinic? What has your experience been with pain clinics?

Thanks so much for stopping by!

I’ll be chatting about diet, exercise, and supplements for fibromyalgia and chronic fatigue in my next few posts.

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2 thoughts on “You are a medical anomaly, Alexis

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