Do you like to wait for things? Are you patient enough that having to wait doesn’t really bother you, or do you get frustrated when you have to wait, even a short time?
I was thinking recently about all the waiting my illnesses have caused me to do. For starters, I wait to feel less pain in my day. I wake up in the morning stiff and sore and sometimes I have to wait to get out of bed because I’m in too much pain.
I take my medications, and then I have to wait for them to kick in. There’s never instant relief, no matter how I long for it. Once the pain pills have started to work their magic, I’m able to start my day. At this point, I’m usually starving because I had to wait to eat.
The whole day goes like this. I wait to get pain relief, I wait until I feel hungry, I wait to take a bath until my husband is home, I wait to do any type of work or hobby until I have some energy. I wait to feel happy. I wait for my husband to come home from work so I have someone to talk with. I wait for the phone to ring from friends who’ve forgotten me.
I don’t mean to sound like a pity party, I’m just sharing the realities of my life. I can’t get out and about to make new friends and with Covid-19 in our lives, it would be impossible to do even if I was able to get out of the house. So, I wait for a miracle to happen, for my pain and fatigue to disappear.
What have I learned with all the waiting? Patience for one thing. I know that things don’t just happen overnight and that all good things take time. I know that I’ll always live with pain, but I’m learning how to manage it as best I can, with the various tools at my disposal.
I use medications, massage, deep breathing, guided meditations and more to manage my days. Sometimes I can distract myself with a good book or a movie. Sometimes a treasured hobby can keep my mind occupied.
Sometimes I write….this blog, my poetry, a letter to myself. Getting words onto paper holds a special place in my heart and I find it healing to go back and read what I wrote during stressful times.
Telling someone about what I’m going through can be very helpful to get me through the day. Often I’ll touch base with my dearest friend Charlotte and just share what’s on my heart. We’ve been friends for 20 years now and she knows me so well.
She asks me the right questions and probes my answers to get to the heart of things. I love how she listens and offers words of wisdom. It makes the waiting easier.
I’ve also been involved in Pain Management groups before and I find them so helpful, because it’s people just like me going through the same situations that I do. They get me…they know what the waiting is like.
I am an active volunteer and sit on several various committees that help to make real change in how Health Care is delivered. One is a Physician Improvement Measurement Group where we survey Doctors on how they can improve their practices.
Having spent much time in Emergency Departments over the years, I also volunteer with the BC Emergency Medicine Network. I sit on the Executive Committee and on the Clinical Resources Committee where we are currently updating all the information sheets that are handed out to you when you are discharged from the Emergency Department. It’s a big project but so worthwhile.
Other volunteer work includes sitting on the planning committee for a new Health Care Centre in my hometown of Langford, BC. This HCC will help provide medical care to the many people who don’t currently have a family doctor.
Do you find yourself in the same position as I do with waiting? Are you always waiting for the next thing to happen. I’m learning how to ground myself in the moment and not let waiting take over my life. It’s a minute by minute process and I’m constantly having to reel myself in from distractions, but it’s so satisfying when I do.
I may always be kept waiting for certain things with my Fibromyalgia and my Chronic Fatigue Syndrome, but I’m becoming more aware and finding ways to make it positive and not negative. I hope you can too.
Share your thoughts in the comments below. I’d love to hear from you. Remember,
Living with a Chronic Illness can be life changing. Everything you knew or did before your illness changes, and life becomes. very different. Suddenly, you’re seeing doctors, attending medical appointments, taking medications, trying new therapies, all while living with pain, fatigue and various other symptoms.
Controlling Your Attitude
It’s easy to let this new life overwhelm you. A normally cheerful and outgoing person can now be dealing with an immense amount of stress, and it’s easy to let your attitude about life change. “It’s not fair” you might think, and you’d be right. Developing an illness of any type is not fair.
The important thing to remember is that the only one who can control your attitude is you. Only you have the power to take the negatives in your life and try to find positives instead. How do you find a positive in pain? Well, there are several ways:
Pain Forces You To Slow Down
When you live with Chronic Pain or Illness, you find yourself overwhelmed with all the new changes in your life. You may be forced to slow down a bit to deal with these changes, and that can be a good thing. Rest allows you to reduce stress, heal faster and is good for your emotions as well.
Connections With Other People
Finding people who are experiencing the same thing you are can be golden. There’s nothing quite like explaining your symptoms to someone and having them not only understand, but empathize with what you’re going through.
Relationship With Your Medical Professional
Most people see their doctor only once or twice a year. When you live with Chronic Pain and Illness, you will likely see your medical professional far more frequently. This is a great opportunity for you to build a strong relationship with them, so you get the best care possible.
Chronic Pain and Illness forces you to learn self care, a skill most of us don’t employ often enough. Self Care means taking time to do the things that make you feel good – exercise, meditation, prayer, reading, listening to music, yoga, connecting with others…the list is endless. The more you practice Self Care, the better it is for your overall health.
Many Health Care Organizations require Patients to advocate about their conditions and this can go a long way in helping you to find a positive about your health. It’s empowering to stand up in front of others and share about your condition and how it impacts your life. Others benefit from your experiences and you can change lives in ways you might not have imagined.
Developing A Hobby
Sometimes living with Chronic Pain and Illness forces you to look at your life and determining that you need to make some changes…perhaps you need to put some fun in your life. If you love to read, write, draw, create or some other type of activity it is a good distraction to your illness.
If your illness has caused you to not be able to do the things you used to love then perhaps it’s time to find a new hobby within your abilities
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.
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 and I sit on two committees with the BC Emergency Medicine Network. I continue to seek out new opportunities to volunteer and was last year was nominated for three WEGO Health Awards – including one for Best in Show: Blog and one for Best Kept Secret (regarding my blog).
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…
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.
Forestier’s Disease is a rare form of degenerative arthritis. More commonly known as diffuse idiopathic skeletal hyperostosis (DISH), this disease attacks the ligaments of the body and turns them to bone.
The process is caused by the buildup of calcium salts in the ligaments and tendons, creating abnormal new bone growth (ossification). Doctors are unsure what causes this process to occur, but some suspect there is a genetic component. The hardening of the ligaments leads to joint stiffness and eventual loss of mobility.
DISH can occur in any part of the body, but most commonly affects the spine and lower back. Some people have DISH in their neck ligaments, which can make swallowing difficult. Other areas affected include the shoulders, elbows, ribs, knees, feet and ankles.
When it attacks the ligaments of the feet and ankles, DISH results in heel spurs, small sharp growths of bone that appear along the heel. DISH can be progressive. As it worsens, it can cause serious complications.
Causes of DISH
Sex. Men are more likely to develop DISH than women.
Age. DISH is most common in older adults, especially in people older than 50.
Diabetes and other conditions. People with type 2 diabetes might be more likely to develop DISH than are those who don’t have diabetes. Other conditions that can raise insulin levels in your body may also increase your risk, including hyperinsulinemia, prediabetes and obesity.
Certain medications. Long-term use of medications called retinoids, such as isotretinoin (Amnesteem, Claravis, others), which are used to treat skin conditions such as acne, can increase your risk.
Symptoms of DISH
DISH does not initially produce symptoms. As it progresses, you might experience:
pain and stiffness in your joints, especially in the morning
loss of motion in your feet, lower back and other affected areas
You should always consult a doctor if you’re experiencing pain and stiffness or if you have bone spurs.
In most cases, DISH causes mild discomfort, allowing patients who have it to live with the symptoms through a combination of pain relievers, stretching exercises, other interventions and in rare cases, surgery to remove bone growth.
For others, the disease may continue to progress which can result in a complete loss of mobility in the affected joints. For instance, if you have DISH in your shoulder, it can make it difficult to raise your arm or move it in all its natural positions.
Fractures are a serious complication of DISH because the stiffness of your tendons makes your bones more likely to fracture if you’re injured.
One huge drawback with DISH is that the pain and stiffness can mimic many other conditions, so proper diagnosis and treatment is essential.
Diagnosis and Treatment
An xray shows the skeletal changes of a DISH patient in the Thoracic Spine.
A diagnosis of diffuse idiopathic skeletal hyperostosis (DISH) is often suspected by the signs and symptoms a person has. X-rays can confirm the diagnosis. In some cases, a computed tomography (CT scan) and/or magnetic resonance imaging (MRI) may also be ordered to rule out other diseases that cause the same symptoms. All three types of imaging studies may be used to see which other areas of the skeleton are affected by DISH.
There is no cure for DISH, but you can
Treat underlying conditions. If you have diabetes or another condition associated with insulin resistance, getting that condition under control will help minimize the symptoms of DISH. Maintaining a healthy weight will also help.
Get pain relief. Ask a podiatrist for pain relievers that can treat joint stiffness in your legs, feet, and ankles. Your doctor might prescribe corticosteroid injections for more severe pain.
Increase mobility. Gentle stretching exercises can keep your ligaments from becoming overly stiff and brittle. Ask your doctor to recommend a regimen for your joints that will keep them moving. Walking, bicycling, and Aqua exercises are all excellent ways to stay mobile.
My Personal Experience
I was diagnosed with DISH in 2014 after going to the Emergency Room for chest pain. After a number of tests were done, including a CT Scan, the doctor informed me that they had discovered I had DISH in my Thoracic Spine (after ruling out heart problems for the chest pain).
I had always had pain and stiffness in my spine but assumed it was “regular” arthritis, as I have Osteoarthritis throughout my body. Finding out it was something different came as a surprise to me. I discovered that because I have Diabetes Type 2, it was likely a contributing factor. In the years since the diagnosis, I have developed bone spurs in my left ankle, and the DISH has spread to include my Lumbar spine as well as the Thoracic spine. The bone spurs on my spine look more like melted candle wax than actual spurs which is typical for this disease.
I find the stiffness is the most difficult part of having DISH. The sensation is like trying to stretch, but never quite getting enough range of motion, so you’re left feeling “incomplete.” It’s almost like one good “pop” would make things better. I do stretching exercises and use a foam roller to help minimize the stiffness, and I’m conscious of my voice as well. I’ve developed some hoarseness over the years which could indicate that the DISH has affected my cervical spine.
I don’t take any additional medication for DISH with the exception of an occasional muscle relaxant if my back is particularly stiff. By relaxing the muscles around the spine, I get some relief from the stiffness that is part of DISH. I find that my stretching exercises are usually effective enough to bring relief. Heat sometimes helps with the stiffness as well, and a good muscle rub or magnesium rub can make a difference in pain levels as well.
If you are experiencing pain and stiffness in the spine or noticing that you are developing bone spurs on your feet (or hands), consult with your doctor and ask about whether DISH could be causing your problems. X-rays and/or other imaging tests can help to determine if there are problems with the ligaments or if there is increased bone growth.
Discovering DISH early can help you get a treatment plan in place to provide relief. Although DISH is considered “rare”, it seems like it’s becoming more predominant than in the past so the sooner you get a diagnosis, the better.
Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!
Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.
What Is Pet Therapy
Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.
The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.
With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.
What Are The Benefits Of Pet Therapy?
Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.
How Can Pet Therapy Ease Fibromyalgia Pain?
While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.
And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.
And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.
So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.
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How Can You Start?
Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.
Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.
So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.
Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.
The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.
Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan. Remember,
Today, I’m featuring a guest post by author Bojana Petkovic, Project Manager at Loud Cloud Health
CBD and Cannabis: How They Benefit Our Health and Society
The good news is that millions of researchers in the field of medicine, pharmacology, and biochemistry put a lot of effort into exploring cannabis and its main cannabinoids. Thanks to research, cannabis and its incredible benefits are quickly gaining momentum. Let’s take a look at some basic facts and stats.
What Makes Cannabis Worth Researching?
Humankind has been familiar with this plant for at least 5,000 years. Throughout history, many people have consumed it as medicine through food and beverages. Some of the most acknowledged effects of cannabis include killing all sorts of pain, helping cancer patients, improving mental health, etc. That is why a growing number of the world’s governments consider decriminalizing or fully legalizing it.
The plant has an incredible number of complex substances in its buds, fan leaves, and stems. Those substances are called cannabinoids. There are ten most significant ones recognized by modern medicine, two of them being CBD (cannabidiol) and THC (tetrahydrocannabinol).
Even though the research has been fruitful, scientists believe there is still a lot more to know about cannabis’s benevolent nature.
What Do We Know About CBD and Cannabis?
First and foremost, we are aware that CBD successfully relieves symptoms such as chronic pain, cramps, and tissue inflammation. Such symptoms are common in diseases like arthritis, fibromyalgia, rheumatism, and numerous other musculoskeletal conditions that typically trouble the senior population. According to the study conducted at McMaster University in Ontario, Canada, CBD tends to reduce arthritic and back pain, leaving trauma-related pain behind as well.
Mental disorders and illnesses are common for all age groups. The typical symptoms include anxiety, mood swings, dementia, and insomnia. Less common ones include severe psychosis.
CBD appears remarkably advantageous in this field of medicine. Research by Bonn-Miller suggests the importance of medicinal cannabis to those who have PTSD by helping them sleep and cope with trauma. Another study from 2006 explains that as much as cannabis might instigate a more regular use, depression and psychotic disorders should be treated with it. Less agitation, more sleep, and success in battling constant anxiety are just some reasons why cannabis should be used in different treatments.
In adults, CBD and cannabis can help cure more severe addictions. Such addictions include heavy opioids, alcohol, and of course, prescription drugs. That may seem paradoxical since cannabis needs to be used in moderation as some forms can cause dependence. Addiction statistics reveal that adequate use of cannabis helped 26% of people who consumed heroin to opt out of it and smoke marijuana instead. Some 40% of alcohol addicts chose to do so as well. Additionally, 66% of prescription drug addicts switched to cannabis for good.
Word of Warning
Though cannabis sounds like a miracle plant, that doesn’t mean it has no side effects. THC is mainly known for being psychoactive, while CBD can induce nausea, dizziness, or dry mouth. Most of these occur if one consumes too much. Cannabis use disorder is a form of dependence, so it is of ultimate importance to use the plant responsibly, and always consult a doctor if you have a condition.
What Can We Anticipate in the Future?
Thanks to technological advancement, we are about to see the new and incredible benefits of this plant. We should not fail to mention that, through further legalization and decriminalization, a large number of people will have job opportunities within cannabusiness. This industry has no intention to leave its upward trajectory. Au contraire, it will most probably be “the next big thing.”
Let’s start the New Year with a review of 10 Symptoms you may experience with Fibromyalgia.
Fibromyalgia is a tricky condition to live with as there are many symptoms you can experience beyond Pain and Fatigue. Here are 10 of the top symptoms you may experience and how to manage them.
1. Brain Fog
This is a cognitive impairment that causes problems such as temporary loss of memory, forgetting words or mixing up words, losing your train of thought, or saying things that don’t make sense. It can be frightening when it happens, as these are also signs of other conditions, such as Alzheimers Disease.
Your doctor can do some mental testing to make sure the symptoms you’re experiencing aren’t being caused by some other condition. Ways you can help yourself include keeping a notebook with you to write down important information, taking a moment to pause and collect your thoughts, and keeping a sense of humour about the situation. If you tend to panic about having this happen, laughing is a good way to keep things light while allowing you to start over with what you were saying.
2. Jaw Pain
Jaw pain in the joints on either one or both sides can be mistaken for TMJ (temporomandibular joint disfunction). Pain and swelling are the common symptoms of jaw pain along with stiffness and being unable to open the mouth without pain.
Gentle stretching exercises and muscle relaxants may be helpful in managing the pain. If only one side is affected, try chewing on the other side to relieve pain. If you hear popping or clicking, or if your jaw seems to be “out of joint”, see your dentist to rule out TMJ or other conditions.
3. Urinary Problems
If you are having difficulty with urinating, whether it’s a problem with urgency, leakage or straining, it’s good to check with your doctor to make sure there’s no underlying problem.
Having Fibromyalgia can affect the bladder and kidneys, causing the above symptoms. Some solutions include urinating on a schedule, doing Kegels, seeing a Pelvic Floor Physiotherapist, and using bladder control products for leakage issues.
4. Body Temperature
People with Fibromyalgia may have difficulty in regulating their body temperature. In my case, I can have cold skin and goosebumps, yet be sweating from overheating at the same time. It’s a very disconcerting feeling.
Things that may help include keeping a light blanket or sweater nearby for chills and a fan for when heat becomes a problem. I have found that keeping my feet warm helps with the chills and then using a fan helps ward off the sweating.
5. Weight Gain
Weight gain is often caused because of medications you may be taking for your Fibromyalgia. Even if you’re not taking prescriptions, you may find you’re still gaining weight – it’s one of the anomalies of having Fibro. The only way to lose weight is by taking in less calories than you are expending. Fad diets may work for a short period of time, but in general are unsustainable.
Following a proper eating plan from all 4 food groups is essential and exercise is as well. You may find walking helpful (consider using walking poles for extra stability) or water activities, such as Aquafit, Deep Water Workouts, or Pool Walking to be helpful.
6. Chest Pain
Chest pain can be a scary symptom of Fibromyalgia and should always be checked out by a medical professional if you experience the following:
Pressure, tightness, pain, or a squeezing or aching sensation in your chest or arms that may spread to your neck, jaw or back.
Nausea, indigestion, heartburn or abdominal pain.
Shortness of breath.
Lightheadedness or sudden dizziness.
The cause of chest pain in Fibromyalgia is often because of something called Costochondritis, which is an inflammation of the cartilage around the ribs. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction.
Treatment includes anti-inflammatory pain relievers such as Ibuprofen or Naproxen and using either heat or ice (which ever feels best for you).
7. Sleep Disorders
Pain can keep you from getting the sleep you need. You may also be experiencing Restless Leg Syndrome and not even be aware of it. Sleep Apnea is another problem that you may be facing and all of these issues can prevent you from getting the deep REM sleep that is necessary to repair the body.
Good sleep hygiene is important to follow. You may want to keep a notebook to jot down your thoughts when you wake at night to see if there is a pattern. Keep the room cool, avoid using electronics for one hour before bed, and try using a weighted blanket to see if that helps.
8. Digestive Problems
When you have Fibromyalgia, you may experience digestive disorders including nausea, vomiting, diarrhea or constipation (or occasionally both), heartburn and a general sense of feeling “unwell”.
Drinking peppermint tea can help with nausea, eating smaller more frequent meals might make a difference and trying to set up a schedule for bowel movements can help relieve discomfort. Metamucil or other Fibre supplements every day can be helpful for the bowels without resorting to laxatives.
If symptoms persist, see your doctor to rule out other potential problems.
9. Skin Problems
Itching, rashes, hives and tiny red marks can often show up when you have Fibromyalgia. Skin may become more sensitive to soaps and fragrances and you may discover that your normally dry skin has become oily or vice versa.
Use of a mild cleanser for face and body is imperative, especially ones containing oatmeal. Antihistimines are suggested when hives and itching become a problem and the tiny red marks that might show up on your skin are harmless.
If you have problems with skin rash, see your doctor who may recommend a dermatologist for further treatment.
Depression and Fibromyalgia may go hand in hand without you realizing you are showing signs. If you are finding yourself struggling to maintain interest in former activities, you’re isolating yourself, eating less or more than usual or have been unable to shake “the blues”, you may be experiencing Depression.
Treatment includes Cognitive Behavior Therapy (CBT) and often, medications. There is no shame to having Depression – you haven’t done anything wrong. You’re not weak, your body is showing signs of a chemical imbalance which should be treated like any other medical problem.
If you are feeling so depressed that you are suicidal, please call a hotline for help. You can find more information on hotlines here for Canada and here for the United States. In the UK, you can use this page for help.
There are over 60 different symptoms that relate to Fibromyalgia. These 10 are just the tip of the iceberg, but are the ones more commonly experienced.
If you are experiencing something new, or if a symptom you’ve had for awhile changes, it’s always important to see your doctor, to rule out anything outside of Fibromyalgia. Better safe than sorry is certainly the key here. And remember…
When I wrote my post An Attitude of Gratitude, I received a lot of good comments on it, both those left with the post and in other formats. I meant every word of that post and I wanted to expand on that today, and THANK my body for all it does, despite Fibromyalgia (and several other health conditions). Here are some of the reasons I have to thank my body (and my mind!)
I Have A Strong And Compassionate Heart
Physically, my heart is in tip-top shape. After experiencing some chest pain a few years ago, I was put through a battery of tests including a heart scan and an ultrasound. Everything came back showing my heart to be in excellent shape and my risk of heart attack to be at approximately 1% based on all factors in my life. Now that’s pretty amazing when you consider all the health conditions I live with, but I trust the tests and the monitoring.
What I tend to be most concerned with when it comes to my heart is how compassionate am I? Do I care about others? Do I show it? Do I reach out when others need a hand or a shoulder to lean on? Those are the heart conditions that I worry about and I work hard to make sure I’m staying heart-healthy in this area too.
I’ve Been Blessed With Common Sense
Not many people know that I never graduated High School. I only finished with a Grade 11 education, and while I’ve taken College courses to complete a Certified Event Planning Certificate, I’ve never furthered my formal education. I was able to get a good job in a field I loved by working hard and having common sense, which I believe is something sorely lacking in many people these days.
I don’t know if common sense is something you’re born with or something you learn. I only know that it comes naturally to me. It’s intuitive, it’s part of me and I don’t struggle with it…it’s just who I am. I may not be the most well-educated person in the group, but at least I have this gift. I’m always thinking and strategizing about scenarios and how I would handle them. I rarely panic anymore about things…I just seem to know how to get on with it. I’m eternally grateful for this ability and I don’t take it for granted.
I’m Able To Give Back To Others
Volunteering is hugely important to me. Having the ability to give back to others makes me feel good and that’s why I sit on committees and working groups, so I can make the improvements that enhance the lives of others. My involvement with Patient Voices Network was a game-changer from the first time I attended the orientation session. PVN is an organization in British Columbia that allows ordinary citizens to have a say in how health care is delivered in our province.
Through my involvement with PVN, I’ve been able to attend conferences and education sessions, sit on committees (4 of them at the moment!) and take part in surveys, including being part of a group that is actually creating a Provincial survey for release in the next year. I’ve traveled for my volunteer work, met incredible accomplished people at all levels of business and government and work alongside other Patient Partners who, like me, are out there making change happen.
I Can Spend Time with Loved Ones
Being able to spend time with my husband and kids and friends is critical to my overall wellbeing. Ray and I have a motorcycle and we love to go for rides around Vancouver Island and the Gulf Islands. When I travel with my volunteer work, I’m often able to meet with our daughter Ashley for lunch or dinner in Vancouver where she works, and this is a huge treat. Our son Troy is in Calgary and I am able to see him when I travel there to stay with a dear girlfriend Charlotte twice a year. These are great blessings to me!
I don’t have a lot of friends who live near me, but I treasure the ones I can get together with all the more, especially Lorna. My online friends play an important part in my life as well –I’d be lost without them. I belong to a few online groups who fulfill a need in me that only they could meet. My body and mind function better because of all these interactions and I tend to forget that sometimes, especially when I’m having a high pain day. I can get very reclusive, but it’s good to know that loved ones are there when I need them, just as I am there for them.
I’m Still Able To Read And Listen To Music
I consider myself lucky that none of my health conditions have taken away the deep pleasure I get from reading and from music. I love reading the life stories of others in the form of biographies and autobiographies. Great fiction warms my heart. True Crime stirs my compassion for others. Reading a good book of any genre is a total act of joy for me and to lose that ability would be heartbreaking, even with all the other options available.
The same goes for music. I don’t listen to music every day, or even that often, but when I’m in the mood for it, it completely fills my soul. My tastes are eclectic, running from Acapella to Zydeco and I’m grateful there are so many ways to be exposed to music in this digital age. The internet has been a wonderful source of entertainment in my life and I’m thankful my body allows me to enjoy the endless variety it brings.
I’m Grateful To Be Able To Blog
No matter what my body throws at me physically, I’m still able to write and for that, I have no words. Writing is very personal for me, as it’s all based on my life and what I’m going through. My thoughts and hopes and disappointments are all shared in equal value and it’s a unique feeling to expose myself like that. I don’t mind the scrutiny at all, because I do this of my own free will, but there are times I wonder if I should censor myself more or be even more open.
No matter how bad things get for me physically, I cling to the knowledge that it can get better. Yes, it might get worse, and often does, but even in the worst of my pain, when I’m writhing in bed in agony, there’s a part of me that refuses to give up or give in. That tiny stubborn piece of me that says “hold on, pain ends.” HOPE.
It’s an honour to know that you, dear reader, are taking in my words and finding something useful. That’s something I’m grateful to my body for, too. No matter how bad things may get physically, you can’t take that away from me.