Cognitive Behavioral Therapy for Chronic Pain

I attended a seminar on Cognitive Behavioral Therapy (CBT) for Chronic Pain. It was extremely enlightening and helpful in understanding additional methods to increase quality of life with chronic pain. I have been seeing more articles and information about mental health being included in the management for chronic pain but haven't had the opportunity to yet complete a deep dive on all the information I've found. This idea of how mental health can affect chronic pain was more unfamiliar to me than I would have guessed, and it wasn't until I attended this seminar that the brief amounts of information I had been reading, finally made sense to me. I actually didn't realize either that there are CBT protocols for specific issues including pain and even insomnia. 

CBT is a therapy method that I believe whole-heartedly in for a variety of areas in life from improving mental health to even helping raise children and train pets. The premise and tools of CBT are that versatile. And when I combined the understanding I gained from this chronic pain seminar with my new knowledge of how the brain works to develop everything from how we interpret interactions, emotions, moods, to our core beliefs about ourselves and the world...holy cow, did CBT for chronic pain make even more sense. 

CBT for Chronic Pain (CBT-CP) has been researched for over two decades with strong evidence for its ability to improve quality of life. Unfortunately, not a lot of medical providers are aware of this, so they don't refer their chronic pain patients to mental health counseling. But that doesn't mean a chronic pain patient is out of luck. The manual for CBT-CP is available online, at no cost, so any qualified mental health professional can access and implement it into their therapy practice. And since it's free online, anyone who wants to implement the practices into their own lives can do so too. 

The protocol is spread across 12 sessions, although this can be lengthened as indicated. The basis of CBT-CP is that there is a connection not only between thoughts, behavior, and emotions but also with chronic pain. We know that in the cognitive triad of thoughts, behavior, and emotions there can be a cycle established that reinforces each of these aspects. For example, I'm sad so I decrease my activity participation, I then feel isolated, and I start to develop depression, my depression tells me to isolate more, this makes me feel sadder and lonelier, I then feel more depressed and hopeless, etc. Introduce chronic pain into this cycle and it also becomes reinforced while reinforcing the other aspects. For example, I hurt so I'm not going to do this activity, that makes me sad, and I feel more isolated from others, I think others don't want to bother with me because I can't do this activity, I focus on my pain, that makes me more irritable and hopeless feeling, I start feeling more depressed, etc. 

CBT-CP focuses on identifying (with collaboration from the client's medical providers) an exercise and pacing routine followed by increasing cognitive coping skills. By targeting chronic pain indirectly by addressing one's thoughts, emotions, and behavior that affect pain, it will help make it easier for a person to do what they are wanting to do and thereby increase quality of life. It's important to understand that CBT-CP does not cure or fix pain nor is perfection the goal, it is a tool for increasing quality of life in the self-management of chronic pain.

This first part of exercise and pacing allows for increased activity without the pain flares we so often experience every time we start to feel better again. When I learned this, I also had an "a-ha" moment for a deeper understanding of why I had been seeing an emphasis on "pacing" in the chronic illness community for the last several years. It was, again, a term or practice I didn't really understand and hadn't researched much. I simply did activities as I was able to, often to an extreme level, and then dealt with the consequences afterwards - whatever those might or might not be. And I didn't think about it or analyze my actions and my symptoms. But this idea of pacing would be something that I would start to have more familiarity with following my gallbladder removal as I would find myself restricted to one day of increased activity without a pain flare that would last 3 days. And to help get past the one-day limit, I finally gave into attending physical therapy. But it was during this year that I would unknowingly be playing around with the concept of pacing. 

A common cycle for chronic pain patients is: I hurt so I restrict my activity and rest during my pain flare, once my pain flare subsides, I'll engage in all the activities I can that I wanted to do before that I now feel well enough to do, but then I engaged into much for my body, and I have another pain flare requiring another rest period. However, these recovery periods become longer and longer over time and the longer the recovery period, the more deconditioning our bodies go through creating a vicious cycle of increased pain and decreased activity. 

To the cognitive coping skills part of CBT-CP, think about the 5,000-6,000 thoughts a day a person has on average. How many of those thoughts do you remember from yesterday? We have so many automatic thoughts that whip through our brain and a large number of those tend to be negative, discouraging thoughts that our brain keeps hearing and those thoughts can influence our emotions and our behavior. And when chronic pain is involved...we have even more negative thoughts. Have you noticed when you focus your thoughts on pain that you're having in the moment, that the pain tends to increase? 

Pain is a subjective experience that can only be quantified by one's subjective view or rating of it up to a degree. This isn't to say at all that pain is just in our heads but that there is a difference in the body for measuring and identifying pain levels once pain starts to affect the nervous system. 

Pain is influenced not only by biological factors but also social and psychological factors. The way that we're treated by others can affect our pain level as well as how we treat ourselves psychologically and how our body responds. 

The body reacts to pain with autonomic, endocrine, and immune responses that can increase pain and activate the sympathetic nervous system - the fight or flight mode. When the sympathetic nervous system is activated, it can be measured by heart rate, galvanic skin response, muscle contraction, and EMG procedure that shows muscle response to electrical activity. 

When I'm having to wait longer in a provider's lobby, I start to think about  how long I've been sitting there and how uncomfortable the chair is and then the next thing I know, my body is aching because I've been sitting in an uncomfortable chair for a long time without feeling able to move or walk around because the more I move, the more likely I'll have to go to the bathroom and if I have to go to the bathroom before I'm called back then I worry I'll get called while I'm in the bathroom and they'll think that I'm not there so my appointment will get overlooked or delayed even longer. So, I get into this cycle of spiraling anxious thoughts and a focus on how uncomfortable my body feels trapped in this chair for an unknown length of time. 

What can one do about this to help with chronic pain? 

The cognitive work in CBT-CP is vital as a preparation for implementing behavioral changes to address chronic pain, which in turn will address the emotions we develop as a response to pain and our health conditions. It is also important to obtain medical clearance from one's medical provider for behavioral changes to be implemented and worked on in conjunction with various medical modalities as indicated, such as neurology, pain management, or physical therapy.

An integral tool for assessing progress in CBT-CP is pain measurement tools such as SUDS - Subjective Units of Distress. This identifies where one is starting in their pain level and how it's affecting their quality of life. As the sessions continue, SUDS also identifies not only progress but also what is and isn't working for the individual. There are several different pain assessment models that can be used including ones specifically for children and nonverbal individuals. 

Once the current level of pain, its impact on quality of life, multidisciplinary collaboration and goals are established, it's time to start learning and implementing CBT itself. 

Part of that is realizing that chronic pain is not acute pain. Pain tells our body to activate the fight or flight mode as a proactive, protective response. Our body isn't able to distinguish between acute and chronic pain, we must learn how to instead. The fight flight mode is appropriate when experiencing acute pain but not chronic pain. This is because during acute pain, our body is telling us to stop or get out of the situation to protect itself, it is under threat and harm. This alarm tells us to not engage in activity out of fear of causing harm. Which can occur during acute pain with increased activity, whereas with chronic pain this is usually not the case. Therefore, due to the ongoing condition of chronic pain, the pain that one experiences no longer is a reliable warning that harm is occurring. Rather than withdrawing from activity in fear of causing harm with chronic pain, it is to our benefit to engage in activity with pacing practices in place. Movement not only helps with muscle recovery but also maintaining joint maneuverability and flexibility. When I was in physical therapy to correct the deconditioning that I experienced following my gallbladder removal, there were days that I had a pain flare following the initial sessions and with new exercises. On those days, my therapist explained the importance to continue engaging in movement so that my body would better recover and maintain progress through the pain flare. To do this, I was taught recovery exercises to complete during pain flares rather than my every day strengthening exercises. 

When we over engage in activity, our pain increases requiring longer and longer recovery periods each time as our body becomes more deconditioned during each recovery period. To break this cycle, we must engage in activity in regular intervals to recondition our bodies and reduce the chronic pain cycle of crashing and burning.

The intervals for regular activity of what a person can tolerate is extremely individualized and may require a trial-and-error approach to determine where someone's limits lie. Limits can be determined by starting with intervals of activity as small as needed. An important part of this is physical exercise to recondition the body to allow for greater activities as the sessions progress.

Identifying that one has pain when doing X activity for Y amount of time. This can be determined in two ways - 

1. I do activity until I start to feel pain and I know I need to start with a shorter time interval than that 

2. I am able to do activity for this amount of time without pain, I will increase the time incrementally to determine what time interval I can tolerate.

Pacing comes into play by stopping the activity at the identified interval and allow for a recovery period. To further reduce deconditioning, pacing amounts can also be determined by pacing at 50% rather than 100%. The goal is to reach a steady pace of activity and rest to avoid pain flares, deconditioning, and increase quality of life.

Moderation is the key principle to pacing. This is a hard concept for many of us as we are used to over engaging in activity on our good days leading to us crashing and burning. We often think that it takes less time, and we can be more productive if we get everything done when we feel our best. In actuality though, this takes more time away from us and what we may be needing to do. Moderating our activity allows for more things to be done in total with less recovery periods required. 

For example, we can go full throttle for two days straight but then have a flare that requires a week recovery.  Or we could pace ourselves for the week at a certain percentage each day of activity and rest and not have a pain flare that requires an extended recovery period.

As we rebuild our bodies with exercises and engage in activities with pacing, we can monitor our ability to increase that activity time with incremental increases to the intervals between activity and rest. This is not to say pain will no longer occur, but that with moderation we can better control the balance between activity and pain so that our chronic pain is more tolerable and what we enjoy becomes our focus rather than our level of pain. 

Relaxation training becomes more integral for quality of life with the deeper understanding of how emotions and pain affect out nervous system and therefore our stress responses. As mentioned previously, stress responses can increase pain. If we reduce our stress responses, we can reduce our pain as well. Enter relaxation training. There are a multitude of relaxation practices that one may implement in addition to breathing exercises and meditations. Relaxation exercises are not cookie cutter as some are more enjoyable or more effective depending on individual preference. Therefore, it's helpful to experiment with different techniques to discover what is best suited for a person.

The next integral part for increasing quality of life, is engaging in enjoyable activities of interest. I discovered how integral this is to experiencing joy that allowed me to start living my best life. It's the things of interest that really give us quality of life and the ability to engage those things, even when it's in a modified way, we can still extract joy from the experience.

It would not be uncommon along the way of these sessions to encounter cognitive resistance. As discussed earlier, throughout life and in reaction to everyday life experiences, we train our brains to think in certain ways. Unfortunately, we don't always train our thoughts to be the most helpful. Learning and identifying the distorted thoughts we use to view the world with allows for starting to change those negative thought patterns. There are 13 common distortion patterns that we are all guilty of using at some point or another. These include:

• filtering out the positives so that we aren't even aware of them
• discounting positives so they don't even matter
• polarizing thoughts to it's all or nothing, black or white, there is nothing in between
• overgeneralizing one thing and applying it to everything in a never-ending situation
• jumping to conclusions or mind-reading without actually knowing the real situation
• catastrophizing every situation to the worst possible situation, regardless of likelihood
• personalizing things that have transpired as having occurred solely because of ourselves
• fallacies that you have all the control or none of the control in a situation, measuring behavior or situation based off how fair they feel to us and believing that others should change to suit what we want
• blaming others for our feelings
• shoulding ourselves or others to what we expect without allowing for exceptions
• emotionally reasoning that because we feel a certain way about something, that must be a fact
• labeling or mislabeling ourselves or others with judgement and without considering context
• believing we're always right despite evidence and the feelings of others

As we become more familiar with when we're engaging in cognitive distortions, the more we will become aware of them and be able to catch them so that we can change them. My favorite way to change thought patterns is using cognitive reframing or restructuring to challenge the thought and replacement with a slightly updated new thought. 

Cognitive reframing isn't changing a thought completely; it's simply tweaking it. When we whole-heartedly believe a thought to be fact, we're going to have resistance to the idea and attempt to completely change that thought to the opposite. Instead, if we complete a simple, small tweak, we will be more successful and over time, with repeated use, that thought pattern will change.

Let's use the thought that "I can't do any activity without having a pain flare!". Breaking that thought down and earnestly looking for what activities do I do that haven't caused a pain flare, no matter how small of an activity it is. It doesn't have to be activities we enjoy even. Simply tweaking the thought from an all or nothing thought to allow for the positive - "I still have pain flares, but I have been able to do X without a flare". 

Challenging questions for that thought could include what small things am I able to do without a pain flare? (Sitting up, drinking water, however small it needs to be). When something is painful to do, how long does the pain last? Does it last the same amount for every single activity I do? Are some things less painful to do or require less recovery time? 

As we challenge thoughts and find exceptions to the thoughts, the more we give back to ourselves, the more grace we allow, and the better we become at seeing the exceptions. In turn, our behaviors change and in turn, our mood. When we feel less hopeless, defeated, even angry about something the more motivated we become and likely to do things and focus on things in life that add to our quality of life. 

Not only does changing negative thought patterns improve mental health and reduce painful emotions that trigger our sympathetic nervous system, but it also increases our coping ability with pain. 

The last piece in CBT-CP is to look at the pain and sleep interaction. Sleep is necessary for body recovery physically and emotionally. Poor sleep can increase our sensitivity to pain. Therefore, practicing good sleep hygiene and even participating in CBT for insomnia can affect pain levels.

Good sleep hygiene includes:

• only going to bed when sleep, not just tired or fatigued
• using one's bed only for sleep and sex
• if unable to sleep after 20 minutes, get out of bed and only return to bed when sleepy
• awakening at the same time every day and going to bed at the same time each night
• avoiding naps during the day
• keeping the bedroom dark, quiet, and comfortable for sleeping
• limiting caffeine intake after 2 pm
• limiting food intake for 3 hours prior to going to bed

Learning how to implement each of these parts in my life has significantly increased my quality of life and how I manage my chronic pain. It took me about a year to find and maintain an effective self-care practice of exercise, pacing, and activity for what works for me. There are times I slip back into old habits, and I have to catch myself so that I can correct. I hope that with time and practice, you'll start seeing changes soon as well.

Post Concussion Syndrome

This has been a story in the making for over a year now. I am now released from worker's compensation and feel able to share my story with Post Concussion Syndrome (PCS).

In 2015, I fell at work and hit my head due to my blood pressure bottoming out. I didn't have a concussion from that fall, and it wouldn't be until 2022 that I would come to understand how so many of my health changes stemmed from that single fall that caused me to develop Abdominal Migraine.

In early February 2023 I fell on the ice at work injuring my head and my right knee. I didn't even land on my knee but yet I twisted it in the process. At first, I didn't think anything about it really. I immediately hurt from my fall, as I would expect. I called my neurologist's office to let them know I had hit my head so that they were aware and that I was feeling alright except for the expected pain from a fall. However, within a few hours, things started to change. I started having pressure in my head, headache, my concentration and speech were off, I felt funny. There was such a remarkable difference in my speech alone that when I called my neurologist's office back, I was told that I definitely needed to go the ER for evaluation.

My mom took me to a small, local ER. In spite of being there for concussion symptoms, the ER doctor was only concerned if I was vomiting and if I had hurt my knee and neck. He ordered a knee x-ray and a neck CT scan - both were unremarkable. He said I scored a 15 on some scale (which was really good evidently), I wasn't vomiting, and I had hit the back of my head so he wasn't concerned about a severe concussion and therefore he wouldn't order any imaging of my head. I didn't realize until after I was released that I don't think he asked me if I was having any other symptoms other than pain and vomiting. The only reason that the ER doctor explained why he wasn't worried about a severe concussion and would even use the word "concussion" with me was because I kept asking every staff member that came into my room why I wasn't having any imaging tests of my head. Word got back to the doctor, and he decided then to say anything about a concussion to me. Even then, he would only say "you might have a mild concussion". Might my ass. And the only instructions I was given were by the nurse who warned me about increased symptoms if my heart rate increased over the next couple weeks and to take Tylenol or Ibuprofen. A day or two later, I realized that I hadn't advocated for myself at all like I normally would, and this wouldn't be the last time either when dealing with my concussion, unfortunately. 

To say that I have been completely confused and scared, unlike myself in so many ways, is an understatement. A friend told me to not look at any screens and to follow up with my PCP. I told her about it and asked about any precautions/restrictions I needed to take. The only thing I was told was to limit screens. 

The night of my fall, my entire body hurt - every single joint and major muscle group was flared. I hurt almost as badly as did following my gallbladder removal surgery when my nerve pain kept me bedbound for 4 months except for the time I went to work. Four days later and looking at screens still triggered or increased my headaches. Since my injury occurred while at work, I was followed by worker's comp and bound to their rules and recommendations. With my symptoms no better after the 4 days the ER doctor wrote for me to be off work, I was directed to 3-4 different nurse practitioners to manage my care at an urgent care contracted with my worker's comp. I wasn't assigned to one nurse practitioner, so I never knew who was going to be the one to manage my care that week when I would return for each follow up visit. The time I was allowed and restricted from screens changed every week. But by my 2nd visit back, there was concern about my knee that I twisted in my fall and was referred to physical therapy. There the physical therapist told me I likely had an injury to my outer meniscus and was allotted 6 sessions of physical therapy to strengthen it as it healed. 

In the meantime, I was still experiencing headaches, memory loss, loud noises bothering me, excessive crying at sometimes nothing at all and other times if I was overwhelmed in the slightest, misreading signals so I thought everyone was mad at me with absolutely no evidence, numbness, difficulty concentrating and forming sentences when my headaches were really bad. I differentiate between how noises bother me - usually when a noise bothers someone it hurts their ears but for me, noise hurts my brain. One day, I had the worst headache I've ever had in my entire life. My entire head hurt immensely and every few seconds it felt as though I was being forcefully struck on the top of my head repeatedly for about an hour. It took Tylenol 45 minutes to start to lessen the pain. I struggled with my short-term memory for a long time, and it was very upsetting to me. I couldn't remember things like where I had found a coffee I liked. One week, I bought a to-go drink from somewhere that I sipped on for several days. By the end of the week, I looked at this generic cup and realized I had no recollection of where I had obtained this cup from. While most of the things I couldn't remember weren't significant it was the mere fact that I couldn't remember that was extremely upsetting and would lead to crying spells.

There were so many days that I was completely convinced that Mike was ending our life partnership with absolutely no reason to think this. The most frustrating thing? I wasn't even feeling depressed and yet I was more emotional and crying more frequently than I think I usually do when I am depressed feeling. It literally was as though I suddenly lost all of my coping skills. I could only handle feeling overwhelmed, overstimulated, stressed for about 5 minutes max before I would break down into tears - and sometimes I couldn't stop crying for 2 hours or more. My neurologist told me that I needed to address this in my mental health counseling or as my brain heals from the injury "it will get stuck like that". Great, like that didn't add even more stress to me during this. My counseling had to be placed on hold though as my cognitive behavioral therapy was virtual so there were times I couldn't be on the computer, and it was unsafe to undergo EMDR therapy due to risk of seizure with a concussion. 

After a few weeks, with symptoms not improving and probably only because I had a crying spell with one of the nurse practitioners, a brain MRI was ordered but didn't show any explanation for my continued symptoms and then after a couple more weeks, I was finally referred to a neurologist. The majority of this process I felt completely confused, no idea what to expect, no idea if what I was experiencing was normal, and feeling terrified this would be how I'd be for the rest of my life. So, to finally be allowed to see a neurologist was a large relief...except though of course, my anxiety of providers I'm not familiar with and my fear of being dismissed and overlooked, misunderstood as a rare disease and medically complex patient. 

The earliest availability with the neurologist I was referred to was mid-July. My case manager and adjuster both agreed this was too long of a wait for me to be seen by a neurologist and asked if my neurologist would accept worker's comp and see me instead. My neurologist, a saint of a man, agreed as a favor to me because he knows me well and is aware of my mistrust and fear of new providers. 

With all the approvals in place, I was able to see my neurologist who advised my brain looked good and cautioned me to only use analgesics 2-3 times a week, not daily, as it could worsen my headaches. Instead, he wanted to focus on preventing my headaches and prescribed Topamax for me to try. It would take up to 6 weeks to become fully effective and has some bothersome side effects and so it's recommended to take it at night so that one sleeps through the side effects. This, of course, had to be approved by my worker's comp team before I could obtain the medication though. My neurologist also recommended that I discuss with my adjuster the logistics for me to have a reduced work schedule to allow time for my brain to heal. He told me that my brain hadn't been getting the time it needed to heal and jumping straight back into work and usual activities hinders the healing process following a concussion. Additionally, he advised me that my difficulty to remember words, using word salad, saying phrases backwards and even repeatedly saying the same thing over and over were all a signal that my brain was needing a break, it was working too hard. 

I indeed did experience side effects from the Topamax - namely numbness. Both of my arms became numb, and it was bothersome, but I was willing to withstand it if it would help my brain. However, by the 3rd night on the Topamax my legs became numb and were hurting. I could barely sleep that night from neuropathy like symptoms in my legs. I thought perhaps taking a hot shower would help my legs feel better. That was the wrong move though as I nearly fell more than once in the shower due to the severity of numbness in my legs and I couldn't feel how hot the water was, so when I got out of the shower my body looked like it had a severe sun burn. I called my neurologist that morning who immediately switched me to Candesartan. Migraine prevention is one of the off-label uses of Candesartan as it is actually a high blood pressure medication. Again, he instructed for me to take Candesartan at bedtime in case it made me drowsy, and it would take a while for it to build in my system. He also advised he wouldn't want to test if I no longer needed the Candesartan for at least 6 months and possibly not until a year. I also required worker's comp approval to try this medication and then again, each month to obtain a refill.

Let me tell you, I am in love with Candesartan. It is an old medication, and I don't have any negative side effects. It doesn't make me drowsy but if I take it at the right time, it allows me to actually sleep well throughout the night. I have never slept as well, especially continuously, as I do with the Candesartan. It doesn't leave me feeling groggy the next day either like all other sleep aids/medications do. And of course, the very best thing about it is it does help reduce my symptoms to a tolerable level. I have not recovered to how I was prior to my fall and am not anticipated to return to that baseline either. I did require my dose to be increased as one missed dose caused a several day flare of my symptoms and one missed dose shouldn't lead to such a long recovery. 

Loud noises, overstimulation, and the decreased frustration/stress tolerance levels have been extremely difficult to navigate as they feed off one another and would then trigger a Migraine headache. Loud noises start to overstimulate my brain, as I become more stimulated the less I can tolerate and the more emotional I become the more likely I am to cry and every one of these things trigger headaches for me. There are also times that the slightest noise is too much for me and I need complete silence. I have been unable to find headphones that cut out 100% of noise but I do have noise cancelling ear buds and headphones that Mike got me to help reduce this cycle. There are times that I require using both my earbuds and headphones simultaneously as the noise is too bothersome with just one. Certain sounds and frequencies are at times more bothersome than others and at times they're not, there is no 100% consistent predictability to what will trigger my Migraine headaches. To make it worse, when I can't escape noise, it has triggered a form of anxiety in my brain that has at its worst required me to use all my strength to not smash my head into something to try to make my brain stop hurting. There have been plenty of days that I come home from work, and I message Mike "I'm lying down, leave me alone until I get out of bed" and he knows that means my brain is requiring complete silence and darkness to recover to a functioning level again.

In the midst of all these events transpiring, I was crying at nearly every turn due to my anxiety and fears coupled with my loss of coping skills since my fall. Once I was able to resume counseling, my counselors started working on identifying the root cause of my emotional distress and loss of coping skills. And we came to the conclusion that while a symptom of PCS is a lower tolerance level for stress and frustration and increased emotionality, trauma was also contributing to my increased emotional state. It was as though I had been transported back in time to when I was 9 starting with my first surgery. As a 9-year-old, I didn't have any coping skills, everything was new, confusing, and scary. Which was exactly how I'd been feeling. I didn't have any providers I trusted then or in the beginning of my concussion. It'd been a week-by-week trial and error for me and Mike trying to fine tune the best things for me and him to do to help me. And it's during this that I realized I need Mike and I truly don't know how I would be navigating all of this emotionally without him. Perhaps that's why I was convinced he was leaving me even. I was letting him closer to me than I ever had before, something that is scary to me, something against the vow I made to myself following my divorce. It was all too much at once and I felt vulnerable on all fronts. 

Mike's been really great though throughout. He makes every effort to answer my calls or call me back as soon as he can because he knows that I'm calling because I'm spiraling, and I need him to help walk me through it into calmness. He pays attention to all the random, useless information I tell him so that when I forget something, he can help remind me and prevent a spiraling episode. When we're in person and I start to spiral, he physically makes me stop and just breathe with him. And it was working! Slowly, over time I've required less time to calm even by myself and lengthened my tolerance level for stress, frustration, and overstimulation. Over a year later and all my symptoms are still not at the level I had pre-PCS but it's much closer at least and much more tolerable. Sometimes I'm able to go almost two weeks without crying from my decreased stress or frustration tolerance level and increased emotionality. I no longer feel insecure about my relationships with others, and I can tolerate loud noises for longer periods before requiring noise cancelling headphones. 

Once my symptom improvement maintained but I was no longer seeing improvements, my neurologist and I agreed that I had achieved maximum medical improvement and not anticipated to ever return to my baseline. My worker's comp then scheduled an Independent Medical Exam by another neurologist at my 1-year mark of my injury to determine if I still required the Candesartan. 

I finally received the notice that my worker's comp case was being closed as the independent neurologist found that I have achieved maximum medical improvement and my medication and any other future claims related to my injury would no longer be covered under worker's comp. Simply put, my PCS won't get better and even though I have only improved as well as I have because I am taking Candesartan, worker's comp has cut me off and doesn't find that Candesartan is needed to maintain that improvement. However, I expected their ruling and while it does suck to have to pay for my medication for the rest of my life it also means that I don't have to jump through any of the hoops that's required by worker's comp to obtain the continued care I need for my PCS. 

I hope I never have another fall again. I am particularly careful now when walking as my brain can't handle continued injuries. This is my second fall as an adult with a head injury that caused a new life-long condition. 

If you or someone you know receives a head injury, I implore you to take it seriously. Concussions are no joke. Seek out the care of a neurologist for monitoring and possible treatment options. 

Comfytemp Weighted Heated Vest: AD - A Sponsored Review

 

Disclaimer: I have been given Comfytemp Heating Pad for Neck and Shoulder Pain Relief as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Chronic pain is, unfortunately, not uncommon amongst those of us with chronic illness and with Familial Adenomatous Polyposis, we often have abdominal pain at the very least. However, part of my Abdominal Migraine is torso pain that extends to the top of my shoulders as well as neck pain due to degeneration in my cervical spine. It was with these thoughts that I looked forward to testing the 

Comfytemp Heating Pad for Neck and Shoulder Pain Relief.

This specific weighted heating pad by Comfytemp fits like a cropped jacket, zips in the front, and has adjustable straps for the sides and arms so that the vest is adjustable to fit sizes Small, Medium, and Large with the arms adjusting up to 16 inches and the chest adjusting up to 47 inches. There is heating in the neck, shoulders, arms, and full back and the heating pads of the vest in the shoulders and upper back are filled with micro-glass beads. This vest is electric; the electrical cord with control is detachable from the vest to allow for machine washing, although I did not test wash the vest.

I have never used a weighted blanket before and although weighted blankets have been shown to aid with anxiety reduction and other benefits, I have panic attacks when I feel confined by fabrics and when something is too near or too tight around my neck. For this reason, I don't believe I would like a weighted blanket as I have become anxious even when only using a heavy comforter. The first time I tried on this specific Comfytemp Heating Pad, straight out of its packaging, I experienced a panic attack upon fully zipping the vest as the collar was touching my neck too much for my comfort level. However, when I straightened out the vest while I regained my composure, I have been able tolerate the vest without experiencing anxiety since, even when napping with the vest on. 

Due to the attached electrical cord during use, it would not necessarily be easy to sleep for long periods while wearing the vest as the cord is attached to the left side of the vest. This would not necessarily be an issue for someone who does not move a lot in their sleep and is sleeping on the correct side to prevent from laying on the electrical cord. Lying on the cord does not impede the vest from functioning properly, however, I do not like to lie on cords when sleeping, I move a lot in my sleep, and I often require using the restroom during the night, sometimes urgently. When I wore the vest while napping, it was after a full day of work and my left shoulder blade was particularly hurting. I looked forward to wearing the vest in attempt to reduce my shoulder and back pain. While lying on my left side with the vest on, I adjusted the side straps to keep the vest's heated pads that are filled with micro-glass beads as close to my back as desired. I was able to fall asleep and when I awoke from my nap, my back and shoulder felt immensely better from the heat. I have worn the vest in this manner on more than one occasion for pain in the same shoulder/upper back area with similar results each time.

The vest has 9 levels for heat with a timer option that ranges from 30 minutes to 9 hours for automatically shutting off the heat. I tested all 9 heating levels and found that the vest heated rather quickly but was not a searing heat that would be considered painful even on bare skin. When reducing the heat level, it took a few minutes for my body to register the difference in temperature, but I was able to notice a difference as I increased and decreased the temperature through all 9 levels. 

What I don't like about the vest is the arm straps. I understand the reason for them to allow for a wide range of arm sizes to fit the vest arms and to secure them, but I found them cumbersome and awkward for putting on and off the vest - something my other family members who tested the vest also voiced. The Velcro straps felt uncomfortable if they weren't aligned properly to prevent touching the skin, I couldn't simply remove the vest as I had to unstrap the Velcro straps from one another and at times, I had difficulty putting on the vest because the Velcro straps were attached to different parts of the vest and kept reattaching before I could put the vest fully on. Instead, I would prefer a thin, soft, loose fabric on the underside of the arms of the vest to fit more naturally like an article of clothing.

My parents tested this vest as well. My mother often times is cold and thoroughly enjoyed wearing the vest. So much so, I believe my father is purchasing one for her. My parents both found it to be "fairly comfortable" and felt the warmth of the vest around their neck, upper chest and shoulders particularly. They found it a "bit confusing to put on initially" and reported "big gaps on the side when adjusted". My mother has chronic pain but was not experiencing any pain while testing the vest for a weekend. However, she stated she thought the vest would be helpful in reducing her pain had she been experiencing any pain in those areas of the body during her trial test. My father particularly thought the vest would be nice to wear if working a desk job or while lounging.

My partner, Mike, also tried the vest. He has chronic nerve pain in his neck that at times also radiates into his shoulders and upper back. Mike found the vest to be on the uncomfortable side as for him, he really needed a larger size. He was able to zip it up completely, although I was surprised by this. He said that it heated quickly, and the warmth felt nice. However, once he became too hot he did not want to turn the heat level down to allow the warmth to dissipate to a more comfortable level - he stated he was too hot to wait for that. His shoulders and back were not hurting when he tested the vest although I suspect the heat may have been helpful with pain there for him, had he been having any during his trial periods. He primarily has pain in the back of his neck and did not feel that the collar of the vest provided any pain relief for him. Part of this reason though was because the collar did not stay up against the back of his neck enough for the heat to be of any potential use. Mike said that he wished that the vest was battery operated so that he could wear it without being limited to one space and especially to be able to wear it outside. 

Oddly enough, I remember thinking several months ago about how I wished there was a heating pad product that was not just a regular heating pad but instead could stay close against my back and move with me in different body positions without having to readjust the heating pad placement. I did not think such a thing existed, it never even occurred to me to do a search for such a type of heating pad. But now I'm aware of such items available through Comfytemp and I am thoroughly impressed with the variety of heated items Comfytemp has available. Overall, I am very pleased with and would recommend the Comfytemp Heating Pad for Neck and Shoulder Pain Relief vest and will be wearing it regularly, in fact I am wearing it as I finish this review.

La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

Living My Best Life

I started this article as 2022 was coming to a close and I was reflecting on all that has transpired and what is presently at hand. I only now feel ready to publish it though as it has been a pretty intense 6 months of 2023 already! As I was reflecting on 2022, I had the following questions and answers and I find myself asking them again now in June of 2023.

Has this been the best year for me? No, absolutely not. Has my life changed for the better this year? Absolutely it has. This acknowledgement led me to the realization that I was and still am living my best life right now. And I'm celebrating it with immense gratitude.

As a result of my medical PTSD, I've struggled with periodic bouts of depression and intense anger with a longing for death that I've experienced since my first surgery at age 9. It didn't help in high school during one of my near-death experiences that I was overcome with the deepest sense of peace I've ever encountered. This peace has left me longing for death even more ever since. So, joy wasn't something I regularly experienced or even thought about, much less sought. To me, life has merely been a waiting period full of suffering. This isn't to say that I've lived an unhappy life. Rather, it's often a life overshadowed by fear - fears of losing my parents or other loved ones, fear of uncertainty, fear of emotional and physical pain, fear of the past repeating itself. 

2021 forced me to dedicate 2022 to focusing on my mental health, learning self-care and allowing self-growth. I started 2021 with emotional turmoil from reliving my own medical traumas while writing my own medical story and my children's book about FAP for publication. This was an intense, emotionally exhaustive and long process - much more than I had anticipated. I ended the year with my 8th abdominal surgery and new, unexplained debilitating chronic pain that would take over 6 months for a diagnosis of Abdominal Migraine. I also was diagnosed with Fibromyalgia around this time, a new diagnosis for me that I haven't even given any thought to until recently. 

I began 2022 with resuming anti-depressant medication and counseling. Shortly after, within the span of a month, two of my family members who had helped raise me, passed away. Not long after that, another family member who had helped raise me moved 2.5 hours away - she was no longer physically close to me in proximity, and it was as though I was losing her too as I was losing those that my childhood life was so firmly founded upon. I was taken back to the loss of previous family members in the early 2000's that shook me to my core. 

In 2022, I added metaphysics courses and EMDR therapy for trauma work to my CBT therapy. While life significantly improved upon appropriately managing the pain of Abdominal Migraine, the end of 2022 wasn't easy either. I started experiencing regular vomiting with the reason only just being determined in May 2023 as that of esophageal dysmotility. I lost another family member and am preparing for the loss of yet another family member. And my trauma work to process not only my past trauma but also my future fears is extremely emotionally difficult work. 

And yet, I'm at a place in my life that I can't deny is the happiest time of my life. I'm cherishing every moment with my parents. I have built a family and life with my life partner, his son and family. I've regained my quality of life after enduring a year of debilitating pain. I'm learning and practicing self-care and healing from my past trauma. I'm maintaining employment, serving in new advocacy roles for the cancer and rare disease communities and celebrated the 10th anniversary of LAP. 

In 2021, I attended my first Reiki session and was confronted by my lack of experiencing joy with a challenge to start finding joy. Through all of the hard work I'm doing for my self-care, self-healing, and self-growth - I can finally say that I do experience moments of joy now in life. And they are absolutely wonderful, and I want more of them. I want them so much so that I often am faced with moments of fear and anxiety to hold onto those moments as they're overshadowed at times by my fear of never having them again. This is becoming a lessening concern though as I am incredibly doing well maintaining self-care after a year of trial and error with how to maintain self-care practices. 

I'm also relieved and grateful to finally know the reason for my unexplained chronic vomiting after nearly a year of this issue only worsening and learning what my treatment options will be for it. It is something I've really been struggling with since July of 2022 that was only worsening and taking a heavier and heavier mental toll. With my esophageal dysmotility, I am faced with very limited options for treatment - a muscle relaxer or surgery - both of which my doctor doesn't like. Fortunately, I previously took Baclofen in 2014 following developing a bulging disc in my neck and didn't experience any side effects from the medication. My doctor agreed to allow me to trial it for my vomiting and so far, as long as I time my doses right and don't overeat, I'm able to keep food and drink down! I've decided to not pursue surgery for two reasons - not only because medication is working but also, my doctor confirmed I have another stricture around my small intestine. And as he reminded me, no one really wants to do surgery on me due to my long history of surgeries and excessive adhesions. I fully anticipate in the future it is likely that I will require surgery for the Whipple Procedure and/or to remove the adhesions creating my stricture. I'd much rather at this point, trade a surgery for esophageal dysmotility for one or both of these possibly needed surgeries in the future. There comes a point when a person becomes inoperable, and I don't want to hasten that time for myself any more than what's absolutely necessary. 

The mental toll I've been under this year has also been compounded by developing Post Concussion Syndrome following a fall in February 2023. This is a subject I will explore in a future post but do not presently feel comfortable publicly sharing the full details of what life has been like with PCS at this time except that PCS has been an extremely challenging and nightmarish experience that no one has been able to truly understand how it's affected me except for my partner, Mike. And that has also been a challenge as it has led me to feel isolated, misunderstood, and dismissed by the majority of people in my life because they don't see or grasp what it's like to have a brain injury that isn't healing at an expected or wanted rate. My brain is still healing with slow improvements, which is something I am also extremely grateful and relieved about and hope that when my brain fully heals that I won't have lifelong complications from the injury. 

It's a difficult process to accept when life changes with no guarantee or even signs of improvement to return to how life was previously. In spite of a multitude of changes occurring in the last 2 years with barely any time to adjust to one change before another arises, I can confidently say that presently I am living my best life and even though there are no cures for my conditions, I'm full of gratitude for where I'm at in my life and I eagerly anticipate a world of wonderful things to continue as time goes on. 

Chronic Pain and Physical Therapy

Chronic pain – it’s been my companion in life early on. It served as an early warning system that there was something wrong with my body. It was with this chronic abdominal pain that led to discovering my Familial Adenomatous Polyposis diagnosis at age 8. It was with this that my colon was able to be removed in time to prevent my already turning cancerous polyps from exploding into cancer at age 9.

I can’t say it has served a noble purpose since then though. Instead, it’s become a minefield for me to navigate; trying to find my way to balance it and enjoying life’s activities. Throughout the years, I've required physical or occupational therapy 4 times for the management of chronic pain - back pain, neck pain, tendinitis, and nerve pain.

My first year of surgeries, I remember the chronic pain I began to experience in my back. During my hospitalizations, I required my spine to be lined with what felt like an endless row of ice packs to merely numb the pain. I remember the smell of the powder that lined the inside of the ice packs. I remember how they felt in my hands and the coldness along my bare back. I remember the agony. Perhaps, if we had realized during that year that Morphine doesn’t have any effect on my pain it would have been different. We wouldn’t realize this though until my surgeries during my high school years. The chronic back pain would have been different too if my doctors had referred me to physical therapy after my surgeries to strengthen my severed abdominal muscles so that they would be able to support my back again – thereby reducing or alleviating my back pain.

The next few years I don’t remember much, and definitely not how I physically felt. This blocking out of memories is part of my coping mechanisms with the medical PTSD I developed from that first year of surgeries. I believe I must have been healthier during my middle school years – I didn’t have any hospitalizations during that time. I wouldn't have hospitalizations again until I underwent my ileostomy reversal in 2001. This would lead to chronic pain I haven’t been able to ignore or forget since; pain that changes over the years but has remained constant.

Following my ostomy reversal, due to adhesions I began having severe abdominal pain that worsened with ingestion of food or liquid. The severity of this pain has varied over the years. For the first 6 years following my ostomy reversal, it was at its peak in severity. I remember every time we’d go to a restaurant, I’d lie down on the bench at our tables, curled up in the fetal position trying to cope with my abdominal pain. Ethnic foods caused the most pain amongst the foods I ate – but there wasn’t any food that didn’t cause pain. My body finally began to adjust to its “new plumbing” I suppose, and the pain did decrease in severity after those first 6 years. It remained at this more manageable level until 2015.

In the meantime, I would develop tendinitis in both wrists and chronic neck pain. Due to malnourishment throughout the years, I developed tendinitis in my wrists and degeneration in my neck allowing for a bulging disc to occur. I underwent a few months of occupational therapy to manage the tendinitis pain and I required 6 months of physical therapy to manage my neck pain. I continue to have chronic pain in my wrists and neck at a tolerable level majority of the time, except for sporadic flare ups.

In 2015, I was malnourished and dehydrated from depression during the height of my marital issues. As a result, my blood pressure bottomed out while at work and I fell, hitting my head on hard tile. This event would lead to a spiral of new pains over the next several years. A spiral that wouldn’t be fully understood until 2022.

Since I fell at work, I was required to be evaluated at the ER – which led to my first hospitalization since my last one in 2007. During this hospitalization my pain would once again change, and it changed overnight. The night before I was discharged, I had a headache during the middle of the night – a rare occurrence at the time. It wouldn’t stop and I was only ordered Tylenol and Morphine for pain. I don’t like taking pain medication of any kind – so much so, I forget that OTC medications such as Tylenol, Ibuprofen, Aspirin, etc. even exist. I couldn’t sleep and the headache pain wouldn’t stop, so I asked for Tylenol. That didn’t make a difference and my only option was Morphine. I didn’t anticipate the Morphine to be effective – it never has been before, and it was in the middle of the night; I didn’t see any sense to have an on-call Hospitalist be contacted for a pain medication to be ordered for a headache, especially when I was to be discharged the following day. So, I tried the Morphine and as expected, it didn’t help my headache. Instead, it caused severe constipation that would in turn cause severe abdominal pain. Along with this pain came severe nausea – something I don’t recall experiencing since having my 7^th surgery to remove adhesions following my ostomy reversal. This new, severe duo has stayed with me ever since waking up that morning following accepting the Morphine. It was like a switch had been flipped and it would take months of trial and error with medications to find the right combination for me. I relied on Bentyl and Compazine three times a day. These were the only medications to manage my pain and nausea so that I could function more easily. Without them, it was difficult to get out of bed much less participate in life. My doctors couldn’t find any other reason for the new pain and nausea other than adhesions with gallstones contributing as well. And this is how it stayed until my 8^th surgery in 2021 to remove my gallbladder and adhesions for the 3^rd time.

Magically, the first 2 weeks after my 8^th surgery, my pain and nausea ceased. I stopped requiring the Bentyl and Compazine. However, at the 2.5 week mark my pain would once again change – and change to a level I had never experienced before. The new pain reduced me to becoming bedbound outside of the time I forced myself to go to work. I lived like this for 4 months following this surgery. Test after test was completed, medication changes were made; a cause couldn’t be found, nothing helped to provide even a glimpse of relief other than lying down. Any activity, even sitting up, worsened my pain. My GI was at a loss and didn’t know what else to do than to try Lyrica. Lyrica changed my life within a couple weeks my pain started to lessen to a tolerable level, and I could start venturing out of my bed outside of work hours. During this time, I was consulting with every specialist possible. After 6.5 months, I finally had an answer and treatment plan – it was Abdominal Migraine that started from my fall in 2015 and was exacerbated by my gallbladder surgery.

Fast forward to August 2022, my pain and nausea were well managed by my Neurologist treating the Abdominal Migraine, but I still had pain that worsened by too much activity. While I was able to maintain working and participating in activities of my choice again – I risked a 3-day pain flare anytime I exerted too much activity. What was too much activity? I didn’t know, especially because the pain flares wouldn’t hit until 2 days afterwards.

But my life would once again change in respect to my chronic pain when I asked for physical therapy. Within the course of 3 months, I've started to have days with barely any pain, days that I've felt better than I had in years.

My body had become severely deconditioned during those 4 months of being bedbound and while my medications are appropriately treating my nerve pain, my muscles were too weak and contributed to my pain. I required physical therapy twice a week for 2 months to focus on strengthening each of the 6 major muscle groups to better manage my pain. My progress deteriorated too fast when I decreased to once a week even with exercising at home. I had to slowly increase my exercises, incorporating new exercises and their frequency and level of difficulty to manage the pain flares that occurred after each milestone in my therapy. There were days that were emotionally difficult for me as I would be filled with frustration and hopelessness with each “setback” in the progress I was making. There were times I would quietly cry without control during my therapy sessions during a pain flare.

Over time, I went from not being able to tolerate 2 days of activity in a row to completing 10 consecutive days of exercise without a pain flare. I could have kept going too on that streak, a pain flare didn’t stop me from continuing on. I was feeling particularly emotionally and physically worn that I let myself have a day or two of rest – and really our bodies need a rest day after 6 consecutive exercise days.

The last month of physical therapy I was able to decrease to a session once every two weeks while maintaining exercises at home. Upon being able to accomplish this decrease without having a pain flare, I was ready to graduate from physical therapy.

I’ve learned I’m going to have to maintain exercising at home on a regular basis to manage the pain from my Abdominal Migraine in conjunction with my nerve medications or the pain will return to its previous level. This is a challenge for me. I haven’t required to maintain my physical therapy exercises in the past. Previously, I was able to maintain the gains I made in therapy, but not this time. My pain level increase once again with a mere break in exercises for 4 days or more.

I wouldn’t have been able to reach pain management without physical therapy. I required the professional guidance of not only what exercises to do but how to do them, the frequency, etc. to move past my plateau of activity and pain. Now I know what exercises to do to maintain pain management and what exercises to do during a pain flare. I went from experiencing difficulty watering my flower garden, sitting or crawling for a few moments on the floor, to being able to do army crawling – something I didn’t dream being able to do following surgery.

I’ve undergone physical therapy before and witnessed the miracles it provides but I didn’t realize the extent of those miracles until now. There are 2 main things I will always recommend now as part of managing chronic illness – counseling for mental health and physical therapy for physical health; they have repeatedly given me back my quality of life.

My New Diagnosis: Abdominal Migraine

After 6.5 months of chronic pain that was only improved but not cured by Lyrica, consults with 7 types of doctors, a multitude of tests and an absorbent toll physically, mentally, and financially - I finally have a diagnosis: Abdominal Migraine. 

All of my tests have come back normal from my various specialists except for my pancreas enzyme and platelets that were elevated. I underwent 2 CT scans, abdominal ultrasound, MRCP, 3 MRIs, EEG, sleep deprived EEG, EMG, nerve condition test, and a neuropsych test with all unremarkable results that provided no explanation for my new symptoms and pain. With these normal results, my neurologist came to the conclusion that I likely have abdominal migraine which is a type of migraine. 

My doctor explained that migraine is a chemical imbalance in the brain and depending where at in the brain determines what type of migraine and mine happen to be abdominal. He stated this would explain my trunk pain, chronic nausea, dizziness, scalp sensitivity, hearing sensitivity, headaches, lightheadedness, brain fog, appetite loss, and chest pain. Through our discussions and medical history review, we came to the conclusion that my abdominal migraine started in 2015 after I fell and hit my head. A couple days after the fall, I had a sudden, intense headache that pain medication was unable to treat and after that I've had chronic nausea ever since.

The only medication that's been able to manage my chronic nausea is Compazine, which is an abortive migraine medication to break through migraine symptoms. And Zofran can actually trigger a migraine and hasn't been effective in managing my nausea. To treat my abdominal migraine, he's started me on Amitriptyline which is a preventative migraine medication. 

My doctor explained that abdominal migraine is typically diagnosed among children and often forgotten about for adults often leading to other diagnoses such as IBS. Through our discussions though, this diagnosis makes sense considering all of my accompanying symptoms and the time frame of events. I'm relieved to finally have a diagnosis and a new treatment to pursue for my symptoms. 

It will take 6 weeks for the Amitriptyline to reach it's fully effective state and I've been taking it for 4 weeks now. During the 3rd week, I started noticing periods of time where I was pain free for the first time since these new pains started. I am still requiring the Lyrica in conjunction with the Amitriptyline presently to treat my pain but this may change over time as the Amitriptyline reaches full efficacy levels in my body and dosage may be adjusted. I haven't been experiencing nausea either. I will see my neurologist in another 4 weeks and any medication changes will then be decided upon as he didn't want to make any changes to my Lyrica or Compazine yet. I haven't had any changes to my appetite, although I'm not bothered by that. 

I look forward to my next neurology appointment to see what medication changes may be decided upon and continuing improvement to my symptoms now that a diagnosis has been reached. 

Seeking Consults to Obtain a Diagnosis

In the time since my last update in the beginning of November, I continue to have chronic pain since the 2.5 weeks after my 8th surgery to remove my gall bladder and adhesions for the third time. A lot and yet not enough has occurred during this span.

Carafate didn't affect my symptoms. My liver and pancreas enzymes were elevated. My GI started me on Lyrica in December and within a week, I started to notice an improvement to my pain. While I continue to have pain, it is far more tolerable now with the Lyrica. Afterwards, my liver enzymes decreased to the normal range however my pancreas enzyme continued to increase. This triggered a MRCP to be completed which didn't reveal any new findings or issues. With the GI system being cleared, it was recommended to see a neurologist.

This month I saw rheumatology and neurology for consults. Rheumatology completed labs and started me on a trial of Hydrocortisone. While he didn't believe I had any autoimmune diseases, he wanted to try these two things in order to help rule them out as a possibility. He reasoned that while lab work for autoimmune diseases is not as accurate at identifying an autoimmune issue, trying a steroid would further help identify if an issue existed. I agreed to try the Hydrocortisone as I am allergic to Prednisone - experiencing a combination of acidic stool and painful, fragile, rash like skin that creates an awful combination for using the restroom. The Hydrocortisone is more in line with the body's natural cortisol and typically doesn't have side effects. My labs were all normal. I tolerated a low dose of Hydrocortisone without issue although I also didn't notice an improvement to my pain either. Therefore, I was instructed to double my dose. Within a few hours of my first doubled dose, I experienced the same reaction I have to Prednisone and this side effect lasted for over 24 hours before finally resolving for my body to return to its status quo. I didn't try a second dose - doubled or not - after this. With these results, rheumatology released me advising he believes my pain is a nerve and muscle system issue.

Two days later, I was able to have my consult with neurology. He had me complete different physical tests in the office and poked my pain areas with a safety pin to evaluate how pain feels to me in these areas. I'm uncertain what my reactions and performances meant, although he said there were a lot of inconsistencies in my reaction to the safety pin test as the majority of my pain areas felt dull to the pricks. 

While Fibromyalgia was mentioned, it doesn't fit my pain symptoms. Fibromyalgia is explained as having wide spread dull pain. My pain is sharp, stabbing, crushing, and squeezing with very little dull pain. This is even with the Lyrica helping to reduce the severity and duration of pain episodes. My pain migrates around my torso - from my front, sides, and back and typically is not located within the mid range of my abdomen. At times I do have pain in my hips and sometimes even my knees, particularly if my hips are hurting. Fortunately, the mid range abdominal sensations that my insides were hanging outside of my body have ceased and my incisions are no longer feeling strained. I'm uncertain if these changes are due to the Lyrica or simply time. I have also noticed significant improvement to the balance issues I was experiencing following surgery until the end of December. I was randomly nearly falling over when simply standing or sitting still at least once a week, if not more frequently.

The neurologist explained that my pain may be caused by Multiple Sclerosis (MS) and ordered MRIs with and without contrast of my brain and spine to check for plaque on my brain and/or spinal cord caused by MS as well as tumors or other growths that may be caused by Central Nervous System Cancers (CNS) due to my higher risk for CNS cancers from the FAP. He explained, if my pain isn't caused by either of these two conditions, he doesn't know why I'm having nerve pain. I wasn't surprised by the mention of MS as my pain perfectly describes MS Hugs. 

I also had a follow up with my nephrologist this month who maintains that my pain is caused by severe dehydration and I that I simply need to increase my fluid and potassium intake. While these are not bad changes for me to make, I don't believe these steps will resolve my pain.

I'm continuing to await my MRIs and will have my neurology follow up in mid-February.

I am mentally prepared for the possibility of cancer as I have long anticipated a cancer diagnosis at some point in my life due to the FAP. I am not, however, prepared for a MS diagnosis although I truly anticipate this will be the finding.

I am also resuming counseling as the last year has taken a toll on my mental health.

Sensory Deprivation Tanks

I've wanted to try out a sensory deprivation tank for years now and this year, for my birthday, I finally went to one.

Sensory Deprivation is also known as Restricted Environmental Stimulation Therapy. A sensory deprivation tank is a float tank that contains Epsom salt (800 pounds or more) in a small amount of water to allow an individual to effortlessly float. Floating in salt concentrated water allows pressure to be removed from joints, muscles, and tendons. The tank is closed to eliminate all sensory tasks including light and sound thereby allowing the entire body to enter a deep level of relaxation and process information and thoughts in a new way without distraction or strain. The water and air are heated to skin temperature to reduce the sensation of water on the skin. Benefits can include reduced joint, muscle, and nerve pain, improved sleep, energy, creativity and mood with a reduction to depression and anxiety. Soaking in Epsom salts helps soothe sore muscles and irritated skin and reduce swelling thereby helping with minor aches and pains.

My boyfriend and I went to a local float spa. Each suite had it's own sensory deprivation tank and
private shower. We were instructed to shower, using their provided products, before and after entering the float tank. The reason to shower before is to remove any oils or body products that would enter the tank water and with hundreds of pounds of Epsom salts, one would want to wash again afterwards to remove the salt water. The tanks could be left open or be closed and offered a blue light that could be turned on or off as well as sounds. We both decided we wanted the full experience and so we turned off the light and any sounds and kept the tank closed. We were offered ear plugs to further reduce sound and help prevent water from entering our ears. The suite and tank weren't completely sound proof but the float spa was kept quiet and soothing music was quietly played in varying areas of the spa. A head flotation device and spray bottle to rinse your eyes of salt water were also available.

We laid with our heads at the end with the blue light and quickly discovered just how buoyant we were in the saturated salt water. We both kept floating around the tank until the water settled from our entering the tank and disturbing the water. Any movement inside the tank would disturb the water resulting in floating around the tank once again. The water felt silky when touching my skin due to the high level of salt. The salt water could cause slight burning to any open skin that was cut or irritated. Protective ointment was offered to help reduce any stinging from the salt water. We started floating with our arms down by our sides, however, we both felt tension in our shoulders and neck in this position. I found stretching my arms above me to be comfortable and my boyfriend remained with his arms down by his sides and stated that eventually his shoulders and neck relaxed after a period of time. We both have neck problems so I'm not sure if the shoulder and neck tension we both experienced was related to our neck conditions or if others would have the same experience. My boyfriend also has chronic nerve pain in his back and lately his knee has been bothersome as well (we've since learned he had a meniscus tear so no wonder his knee was hurting). I noticed completing a full body stretch in the tank was very pleasurable and felt better than typical stretching outside of the tank. My boyfriend reported reduction in pain after the float but was experiencing pain again by the evening time.

I had a difficult time shutting my mind off in the beginning of the float by towards the middle of my float time I was able to experience a meditative state. My boyfriend became so relaxed he almost fell asleep during his float. There are many benefits to meditation and a sensory deprivation float helps to reach a deep meditative state by relieving the body of sensations. Some of the benefits of meditation include to reduce stress, anxiety, pain, and improve sleep. Meditation becomes easier and more effective with practice. I would conclude that this would be the same for sensory deprivation floats as well. Visit here for a list of relaxation techniques you can complete at home.

Overall, we both enjoyed our float experience and would recommend it to others.