I will be taking a short hiatus from blogging as I am dealing with some issues related to my Bipolar Disorder. I have been in a BD depression for several weeks now and have had some days so bad, I considered suicide.
The main issue is that I need to change my medications again as my current regiment has stopped working. I have been living with debilitating brain zaps that feel like an electrical current zipping through my brain. These leave me feeling dizzy and disoriented, and being on the computer is difficult during those times.
I will be back!! I refuse to let this defeat me, but I do need to take some time away until I have my BD back under control. It’s hard enough living with the physical pain of Fibromyalgia, Osteoarthritis, D.I.S.H., and more, but adding the mental health burden has become too much.
Thank you for your loyalty. Comments are appreciated.
April is Parkinson’s Disease Month and I wanted to talk to you all briefly about this condition as part of my mandate to highlight “invisible diseases”.
Although there can be some visible signs when you have Parkinson’s Disease, it often starts out very subtle and hard to notice. A tremour in one hand might be the only outward sign in the beginning.
Here is an overview taken from the Mayo Clinic website. Click on the link for the full description on Parkinson’s Disease including Testing, Treatments and Living with Parkinson’s.
Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson’s disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as your condition progresses over time.
Although Parkinson’s disease can’t be cured, medications might significantly improve your symptoms. Occasionally, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.
Parkinson’s disease signs and symptoms can be different for everyone. Early signs may be mild and go unnoticed. Symptoms often begin on one side of your body and usually remain worse on that side, even after symptoms begin to affect both sides.
Parkinson’s signs and symptoms may include:
Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may a rub your thumb and forefinger back-and-forth, known as a pill-rolling tremor. Your hand may tremor when it’s at rest.
Slowed movement (bradykinesia). Over time, Parkinson’s disease may slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk. It may be difficult to get out of a chair. You may drag your feet as you try to walk.
Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can be painful and limit your range of motion.
Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.
Loss of automatic movements. You may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
Speech changes. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
Writing changes. It may become hard to write, and your writing may appear small.
When To See A Doctor
See your doctor if you have any of the symptoms associated with Parkinson’s disease — not only to diagnose your condition but also to rule out other causes for your symptoms.
In Parkinson’s disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to symptoms of Parkinson’s disease.
The cause of Parkinson’s disease is unknown, but several factors appear to play a role, including:
Your genes. Researchers have identified specific genetic mutations that can cause Parkinson’s disease. But these are uncommon except in rare cases with many family members affected by Parkinson’s disease.However, certain gene variations appear to increase the risk of Parkinson’s disease but with a relatively small risk of Parkinson’s disease for each of these genetic markers.
Environmental triggers. Exposure to certain toxins or environmental factors may increase the risk of later Parkinson’s disease, but the risk is relatively small.
Researchers have also noted that many changes occur in the brains of people with Parkinson’s disease, although it’s not clear why these changes occur. These changes include:
The presence of Lewy bodies. Clumps of specific substances within brain cells are microscopic markers of Parkinson’s disease. These are called Lewy bodies, and researchers believe these Lewy bodies hold an important clue to the cause of Parkinson’s disease.
Alpha-synuclein is found within Lewy bodies. Although many substances are found within Lewy bodies, scientists believe an important one is the natural and widespread protein called alpha-synuclein (a-synuclein). It’s found in all Lewy bodies in a clumped form that cells can’t break down. This is currently an important focus among Parkinson’s disease researchers.
Risk factors for Parkinson’s disease include:
Age. Young adults rarely experience Parkinson’s disease. It ordinarily begins in middle or late life, and the risk increases with age. People usually develop the disease around age 60 or older.
Heredity. Having a close relative with Parkinson’s disease increases the chances that you’ll develop the disease. However, your risks are still small unless you have many relatives in your family with Parkinson’s disease.
Sex. Men are more likely to develop Parkinson’s disease than are women.
Exposure to toxins. Ongoing exposure to herbicides and pesticides may slightly increase your risk of Parkinson’s disease.
Parkinson’s disease is often accompanied by these additional problems, which may be treatable:
Thinking difficulties. You may experience cognitive problems (dementia) and thinking difficulties. These usually occur in the later stages of Parkinson’s disease. Such cognitive problems aren’t very responsive to medications.
Depression and emotional changes. You may experience depression, sometimes in the very early stages. Receiving treatment for depression can make it easier to handle the other challenges of Parkinson’s disease.You may also experience other emotional changes, such as fear, anxiety or loss of motivation. Doctors may give you medications to treat these symptoms.
Swallowing problems. You may develop difficulties with swallowing as your condition progresses. Saliva may accumulate in your mouth due to slowed swallowing, leading to drooling.
Chewing and eating problems. Late-stage Parkinson’s disease affects the muscles in your mouth, making chewing difficult. This can lead to choking and poor nutrition.
Sleep problems and sleep disorders. People with Parkinson’s disease often have sleep problems, including waking up frequently throughout the night, waking up early or falling asleep during the day.People may also experience rapid eye movement sleep behavior disorder, which involves acting out your dreams. Medications may help your sleep problems.
Bladder problems. Parkinson’s disease may cause bladder problems, including being unable to control urine or having difficulty urinating.
Constipation. Many people with Parkinson’s disease develop constipation, mainly due to a slower digestive tract.
You may also experience:
Blood pressure changes. You may feel dizzy or lightheaded when you stand due to a sudden drop in blood pressure (orthostatic hypotension).
Smell dysfunction. You may experience problems with your sense of smell. You may have difficulty identifying certain odors or the difference between odors.
Fatigue. Many people with Parkinson’s disease lose energy and experience fatigue, especially later in the day. The cause isn’t always known.
Pain. Some people with Parkinson’s disease experience pain, either in specific areas of their bodies or throughout their bodies.
Sexual dysfunction. Some people with Parkinson’s disease notice a decrease in sexual desire or performance.
There are a number of different drugs that may be utilized in the treatment of Parkinson’s Disease. The most popular include:
Carbidopa-levodopa. Levodopa, the most effective Parkinson’s disease medication, is a natural chemical that passes into your brain and is converted to dopamine.
I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…
Going to the Emergency Room
There are several reasons why people with Chronic Pain in particular hate going to the ER. Here are some of the top reasons that have been shared with me over the years.
1. Fear of Being Labelled a Drug Seeker
This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.
You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!
If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.
2. Fear of Needing More Pain Medication
You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.
Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?
The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!
3. Fear of Being Out of Our Comfort Zone
I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.
I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.
4. Fight or Flight Reaction
If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.
For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.
It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.
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5. Wondering if My Pain IS Legitimate
When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.
Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!
Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.
It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.
By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.
Ways to Improve Your Emergency Room Visit
There are several things you can do in advance to help improve your visit to an Emergency Room.
1. Make Sure You Have a Regular Family Doctor
Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.
What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.
2. Try to See Your Family Doctor First
If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).
Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
3. Get Your Prescriptions Filled by the Same Pharmacy
One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.
4. Bring a List Of Your Medications with You
At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.
You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.
5. Co-operate with The ER Personnel
This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.
Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.
Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.
Conversations with Emergency Room Doctors
For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.
I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.
I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.
One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.
I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.
Fibromyalgia is a complex condition that affects millions of people around the world. There are many questions that people ask when they first find out they have Fibro, and I thought I’d answer some of the more common ones, to help provide some education.
What Are The First Signs Of Fibromyalgia
There are many signs of Fibro but the ones most people experience first is widespread pain and tenderness throughout the body. You may experience pain in only one or two areas, or it may be your entire body. Typically, there are tenderpoints at 18 specific sites on your body, and these are used to help determine if you have Fibro.
Other symptoms of Fibro include:
What Are Tender Points?
Tender points refer to 18 locations on the body that are ultra-sensitive to pain when touched or pressed. Fibro is frequently diagnosed using the Tender Point Test…if you have 11 of the 18 points, you are considered to have Fibro.
Is Fibromyalgia An Autoimmune Disease?
Fibromyalgia is NOT considered an autoimmune disease. Instead, researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Fibromyalgia doesn’t qualify as an autoimmune disorder because it doesn’t cause inflammation. Fibromyalgia is difficult to diagnose because its symptoms are similar or associated with other conditions, including some autoimmune disorders.
In many cases, fibromyalgia can occur simultaneously with autoimmune disorders.
Emotional or physical trauma can cause the development of fibromyalgia and trigger symptom flare-ups. The mechanism behind this is associated with the affected individual’s hypothalamic-pituitary-adrenal axis. Emotional stressors can cause the physiological stress response to become activated, and lead to the delivery of sensory input information to the brain.
Repeated and excessive stimulation of the functional units of this response in an individual can cause their effector systems to become more sensitive. Greater sensitivity causes alternative or less significant stressors to activate the stress response easily.
The combination of the stress response, emotional reactions, physiological responses, and biological reactions that occur and interact with each other due to physical and emotional trauma can cause the development of fibromyalgia.
Of the population of fibromyalgia patients, around half has existing post-traumatic stress disorder, and two-thirds of these individuals had developed fibromyalgia after the commencement of their PTSD. Some individuals may be at an increased risk of developing fibromyalgia due to the failure of certain psychological buffers to work effectively on emotional stress that is caused by everyday life events.
Physical trauma contributes because it causes emotional stress. These mechanisms related to the patient’s brain may primarily drive the chain of neurophysiological responses known to cause fibromyalgia.
Is Fibromyalgia Real or Fake?
Doctors and patients alike state that fibromyalgia is a very real condition. Pain is often subjective and can be difficult to measure. Because there are no lab tests that can show Fibromyalgia, people assume that it is fake. As a result, the most common misconception about fibromyalgia is that it isn’t a real condition.
In both Canada and the United States, fibromyalgia is now considered a condition that qualifies for Disability. The European Parliament has signed a declaration calling for the recognition of fibromyalgia as a disease which causes disability with a right to claim exemption.
What Are The Best Medications For Fibromyalgia?
NSAIDs (non-steroidal anti-inflammatory drugs) like naproxen (Aleve) and ibuprofen (Motrin, Advil) don’t appear to work for fibromyalgia pain. Opioid narcotics are powerful pain-relieving medications that work for some types of pain, but they don’t always work for fibromyalgia. They can also be harmful—and addictive.
The narcotic-like Tramadol (Ultram) has been shown to have some effectiveness with Fibromyalgia for pain relief. Low-dose amitriptyline can also be helpful. Tizanidine and cyclobenzaprine are muscle relaxants that help treat muscle pain from fibromyalgia.
There are three medications that have been approved for use for fibromyalgia. These medications include Cymbalta (duloxetine), Savella (milnacipran) and Lyrica (pregabalin).
Each of them works in the brain: Cymbalta and Savella belong to a class of medications called serotonin and norepinephrine reuptake inhibitors (SNRIs) whereas Lyrica is a drug that targets nerve signals. It has long been used to relieve nerve pain in patients with shingles and diabetic neuropathy. It is also used to treat partial seizures.
For other treatments, this post offers several suggestions for ways to help with Fibro pain. Another option is to try Cannabis or CBD Oil.
How Life Changing Is Fibromyalgia?
Fibromyalgia can affect you in both mild and severe forms. You may find that with medication, you are able to continue to work and engage in other activities without discomfort. Other people find that even with medications, they are in too much pain to maintain their previous lifestyles.
Disability may need to be sought if you are unable to continue working because of your Fibro. You may need to modifiy activities, use mobility aids or adaptive devices or otherwise change your lifestyle to accomodate your pain and fatigue. Every individual will feel their Fibro differently and you may find that your condition changes constantly as well.
What Helps Fibromyalgia?
Rest, good nutrition, mild exercise and a positive frame of mind all go a long way in helping to live with Fibromyalgia. Lack of movement is one of the biggest mistakes you can make if you have Fibro. It causes your muscles to tighten even more, so exercise such as walking, biking or swimming can be helpful in keeping you flexible and having less pain.
A diet rich in fruits and vegetables, lean protein and good carbohydrates is essential. If you are overweight, you might want to try losing some extra pounds to help with joint pain.
Getting the proper amount of sleep can be very difficult with Fibromyalgia. Follow a sleep plan at night to get your best rest possible and nap if you need to during the day in moderation. A well-rested body is better able to function fully.
Finally, try to maintain a positive perspective. If you find yourself struggling with negative thoughts, it may be helpful to seek counselling or coaching. Support groups either in-person or online can also be very helpful.
Fibromyalgia can be a very difficult condition to diagnose and treat, but as you can see, there are things you can do that make a difference. The more you can educate yourself, the better your outcomes can be. Remember,
It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!
Introduce yourself and tell us a bit about you…
Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry.
One fascinating fact about me is:
Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact.
Chronic illness(es)/disabilities I have…
Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former
My symptoms/condition began…
The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018
My diagnosis process was…
I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart.
When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines.
So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis
The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers
The hardest part of living with my illness/disabilities is…
The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain.
A typical day for me involves…
A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs
The one thing I cannot live without is…
Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them.
Being ill/disabled has taught me…
To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes
My support system is…
My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me
If I had one day symptom/disability-free I would…
Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life
One positive of having a chronic illness/disability is…
I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people.
One final thing I want people to know is:
Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day
I want to talk about a difficult subject today…Chronic Pain and Addictions. When you live with Chronic Pain, you can find yourself spiraling in a dark hole. Sometimes depression becomes as big of a problem as the physical pain you live with, and in a desperate need to feel better, you find yourself turning to your medications too often, or you resort to drinking or eating as a way of filling the gap.
Addiction is easy to fall into, as often, you are not receiving adequate treatment for your pain to begin with. You find yourself taking your medictions sooner than directed, or you take more than recommended and then suddenly, you’re in withdrawal at the end of the month when your prescription has run out.
Instead of abusing your pain medications, you may turn to alcohol to increase the “buzz”, or food may become the drug of your choice. “Anything to dampen the pain” is what you might be thinking, and sometimes, it works. Other times, it feels like nothing can fill the unending gulf of pain you live with and so your depression deepens and you’re left feeling worthless. Thoughts of suicide may plague you but you resist telling others for fear they will see you as weak.
Let’s examine this problems in more detail.
Opioid abuse is an epidemic in the United States. In 2016, approximately 11.5 million Americans 12 years and older misused opioid pain medications, and 1.8 million had a substance use disorder involving prescription pain medications. From 2000 to 2015, more than 500,000 persons died from opioid overdoses, with deaths generally increasing as prescription opioid sales increased. In 2012, clinicians wrote 259 million prescriptions for opioids, enough for every U.S. adult.*
There are a variety of medications that are used in the treatment of Chronic Pain. As you probably know, there is a current push from to cut back on Opioids like Oxycodone and Hydrocodone because of perceived over-prescribing and the number of deaths linked to the mis-use of Opioids. The number of deaths from illegal Fentynal overdoses has increased dramatically, yet the people who actually require the drug for their Chronic Pain are being turned away by their physicians or are having their dosages cut back significantly.
PreGabalin, Gabapentin, and mixed drugs like Tramacet (Tramadol and Acetaminophen) are now being used more frequently, but not always to great benefit. This is one of the reasons the use of illegal Fentynal is increasing – people aren’t getting adequate relief from their doctor-prescribed medications and so they’re looking to the streets for solutions.
Throughout the ages, people have used alcohol to manage their pain. A swig of whiskey after a bullet wound in the old Westerns, or to numb the pain of a teething baby are two minor examples. A study done recently showed that 28% of people with Chronic Pain used alcohol to help control their pain**
Although alcohol has been shown to reduce pain, it’s a temporary solution and has potential and possible fatal risks. When you drink, you are more likely to abuse your prescription medications, resulting in furthering the sedative effects of both. You also increase the possibility of liver damage or gastric bleeding. Using alcohol as a pain medication often ends up with exceeding the recommended amount that you should drink and overdose of alcohol and/or prescription medications can be fatal.
Other points to note:
Withdrawal from chronic alcohol use often increases pain sensitivity which could motivate some people to continue drinking or even increase their drinking to reverse withdrawal-related increases in pain.
Prolonged, excessive alcohol exposure generates a painful small fiber peripheral neuropathy, the most common neurologic complication associated with alcoholism.
When a person is unable to control the amount of pain they live with, they may turn to food instead, as a way of finding relief. It doesn’t take away the pain, but satiating yourself gives back the illusion of that control that you’ve lost elsewhere. Anorexia and bingeing/purging become huge risks and lead to further medical problems.
Anorexia is the elimination of food from the diet, until your calorie intake is grossly under the recommended daily allowance for health. It is a psychological and potentially life-threatening eating disorder.
There are a multitude of health risks involved including mood swings, low blood pressure, heart problems, kidney and liver issues, loss of bone density and the very real possibility of death.
Bingeing and purging causes issues such as gastric problems, dental issues from vomiting and bile wearing at the teeth and gums, dehydration and depression issues. The use of excessive laxatives is hard on your bowels and runs the risk of chronic constipation, resulting in a Catch-22 of needing to use more laxatives to alleviate the constipation.
Excessive Exercise is another form of purging. By engaging in obscene amounts of exercise, you expose yourself to potential damage to your joints from overuse, dehydration, weakness and potential heart issues.
Other addictions to be careful about including smoking, gambling, shopping and sex although I’m sure you can think of even more. Each of these excessive behaviours can lead to damaging consequences so it’s imporant to be aware of them. When you live with Chronic Pain, you can have an “all or nothing” mentality – you simply want to do anything that will help you focus on something other than hurting.
The first step to any of these issues is to accept that you have a problem. Professional help is required to allow you to wean off of the drugs or alcohol, or to start a healthy relationship with food.
Support groups are available both in person and online and are highly recommended. To be with people who have gone through the same experiences as you have can be very comforting.
A Pain Management program may be suggested to help you get to the root of your problems, and to help you find solutions to managing your pain more effectively.
Talk to your family physician to start. Now is the time to be honest about what you’ve been going through and how you’ve been coping (or not coping). Accept that seeing a counsellor on a regular basis may be a requirement for your success. Having a safe place to talk goes a long way in setting goals for yourself and achieving them.
Ask about specific books that may help you understand Chronic Pain more completely. Knowledge is power.
Finally, realize that you are not a bad person. You may have made some bad choices, but recognizing them and changing them is what’s important. We all make mistakes, and even if you think you’re the worst person in the world…you’re not. You have value and worth and are deserving of the best care possible. Remember,
What does the word meditation mean to you? When you hear it, what is the first thing you think of? Someone sitting with their legs crossed, going “ommmmm”? Someone doing yoga? A different culture or religion?
Mindfulness meditation can have many meanings, but ultimately, it’s a way of connecting with yourself. It’s a mental training practice that involves focusing your mind on your experiences (like your own emotions, thoughts, and sensations) in the present moment. Mindfulness meditation can involve breathing practice, mental imagery, awareness of body and mind, and muscle and body relaxation.
So what does mindfulness meditation have to do with Chronic Pain? Well, it’s a way of focusing on your body and using the relaxation techniques to reduce pain and tension. With the right amount of practice, you can utilize meditation to counteract against various types of pain including joint pain and nerve pain. Here are some tips and tricks to help you.
Learning mindfulness meditation is straightforward, however, a teacher or program can help you as you start (particularly if you’re doing it for health purposes). Some people do it for 10 minutes, but even a few minutes every day can make a difference. Here is a basic technique for you to get started, from the website Very Well Mind:
1. Find a quiet and comfortable place. Sit in a chair or on the floor with your head, neck, and back straight but not stiff.
2. Try to put aside all thoughts of the past and the future and stay in the present.
3. Become aware of your breath, focusing on the sensation of air moving in and out of your body as you breathe. Feel your belly rise and fall, and the air enter your nostrils and leave your mouth. Pay attention to the way each breath changes and is different.
4. Watch every thought come and go, whether it be a worry, fear, anxiety or hope. When thoughts come up in your mind, don’t ignore or suppress them but simply note them, remain calm and use your breathing as an anchor.
5. If you find yourself getting carried away in your thoughts, observe where your mind went off to, without judging, and simply return to your breathing. Remember not to be hard on yourself if this happens.
6. As the time comes to a close, sit for a minute or two, becoming aware of where you are. Get up gradually.
Learning how to breathe sounds so simple, but many of us don’t do it properly. We tend to breathe from the chest instead of the diaphragm, which leads to shallow breaths. Deep belly breathing is preferable and can be easily learned. Try breathing in tune with this Hoberman Sphere:
Guided meditations can be an excellent resource to help you connect the mind and body. The good people at Mindful.org have several excellent starters that you can access right here.
For content specific to Chronic Pain, these videos may be helpful for you:
Just a few minutes a day is all it takes to learn this simple practice, but the benefits can last for much longer. Used in conjunction with heat, ice and medications, you may find Mindfulness Meditation to be just the thing to ease your Chronic Pain, one breath at a time. Remember,
I want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now.
When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis.
After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained.
Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through.
As Things Changed
Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from.
It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger.
Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.
I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her.
Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again.
I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such asmeditation, music therapy,gentle exercise, stretching, beginners yogaand balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there.
I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster.
I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences. I continue to seek out new opportunities to volunteer and was recently nominated for two WEGO Health Awards – one for Best in Show: Blog and one for Best Kept Secret (regarding my blog). You can clickherefor more information about my nominations.
To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan.
We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…
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In 2016, an estimated 20.4% of U.S. adults had Chronic Pain and in Canada, the numbers say approximately 1 in every 4 people lives with Persistant Pain. Chronic/Persistant Pain is described as pain that extends beyond 3 months of the estimated recovery time of an injury.
The author dealing with an Atypical Trigeminal Neuralgia flare up
Chronic Pain can be caused by the following:
Past injuries or surgeries
Migraines and other headaches
Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.
Chronic pain can range from mild to severe. It can continue day after day or come and go. The pain can feel like:
A dull ache
Sometimes pain is just one of many symptoms, which can also include:
Feeling exhausted despite rest
Loss of appetite
Sleep disturbances (I’m writing this at 2:30am)
Depletion of energy
Chronic Pain and Your Mental Health
Chronic pain can interfere with your daily life, keeping you from doing things you want and need to do. It can wear on your self-esteem and make you feel angry, depressed, anxious, and frustrated. A persistant feeling of sadness may accompany Chronic Pain. Often, people with Chronic Pain have to give up work, hobbies and activities they enjoy, which leads to further depression, etc.
With such a high prevalence of Chronic Pain in North America, how does one fight back? How do you manage living with Chronic Pain and still maintain quality of life? There are a number of ways to manage, such as:
Pain Management Courses
These courses can be a combination of Cognitive Behaviour Theraphy, Meditation and Mindfulness, Injections to help with certain types of pain, and group talk where you have the support of others in a healthy moderated environment. There are also online pain management courses for those unable to get to programs in other locations. These include:
It is my sincere hope that some of these suggestions may be just what you need to help you manage your Chronic Pain. Don’t forget to check for Pain Management Services at your local hospital as well. They often run classes of 4-8 weeks that can help you learn how to support yourself.
Medication And More
Medications play a huge role in managing your Chronic Pain. Opioids are in the news now as doctors across North America are being forced to scale back the number of prescriptions they write, but there is still a useful place for them and it’s worth discussing with your doctor to see if you can benefit.
Other medications that help include drugs like Cymbalta, Lyrica and Savella for Fibromyalgia pain, Gabapentin for nerve pain, Amitriptyline for anxiety and pain, and supplements like B12, Glucosimine, Magnesium, SAMe and Vitamin D
I hope that some of these suggestions will help you manage your Chronic Pain and give you some relief. If you have any suggestions for products that work well for you that I should consider in a future post, please feel free to leave a comment using this form