Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.
It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.
Social Isolation Is Serious
Because of these changes that we have to make – like leaving in the middle of an event or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.
Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people.
It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:
Disbelief from others when you don’t have a clear diagnosis
Physical limitations due to pain or fatigue
The unpredictability of symptom onset
The trigger of symptoms related to noises, smells, etc.
Lack of a strong support system (Family and/or Friends)
Changes in employment or financial stability
Loss of hobbies and outside activities
Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.
What You Can Do About It
When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.
So what can you do when you start having these feelings?
1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.
2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.
3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes
4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.
5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.
6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.
7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.
8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.
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…
I am back from taking a hiatus from writing and it feels good to be typing again. I needed the break as my health was really suffering, and then Covid-19 hit and put a damper on things as well.
It’s important for people with Chronic Illness to recognize when they need to step back from life and make some changes. Rest periods are important in our everyday life, but sometimes you need more than that. A break of several weeks or months isn’t necessarily a bad thing…it helps put your brain into perspective and gives the body an important rest as well.
I had found myself struggling with exhaustion. I would wake up in the morning and within a couple of hours, be tired enough to return to bed for a nap. Later in the afternoon, I’d be sleeping again, and then going to bed early, only to be woken in the middle of the night with pain, making further sleep impossible.
It’s hard to heal or feel better when you have a broken sleep schedule. It can cause depression to sneak in, further adding to the burdens you’re facing and combined with physical pain, you’re suddenly overwhelmed.
I’m not saying I’ve overcome the exhaustion, but I’ve managed to learn how to handle it better. I definitely take naps when I need them and I’m following my body’s own rhythm instead of an artifical one imposed on by me. I am fortunate in that I don’t work, so I have the time during the day to rest and relax when needed. By getting the sleep I need, and finding new ways to manage my pain, I’m starting to feel a bit better.
I missed writing, but I think I took time off at the right moment. I’ve basically been housebound since Covid-19 hit – I’ve been out of the house 5 times and all of them have been for medical reasons except for one dinner out. I’m an introvert by nature so it hasn’t been a problem for me to be home alone. My husband is still working as he is an essential employee at his job (supervising at a homeless shelter).
There really hasn’t been much new to write about but I want to make this blog a bit more personal. I’m still planning on adding information pieces for everyone so you can remain educated and empowered, but I’d like to share more of myself in my posts and how Chronic Illness affects me.
Look for posts to be published once a week, typically on Wednesdays. If you have suggestions for subject materials please leave them in the comments below. I’m happy to write about what you want to read.
Thanks for sticking with me during this hiatus. I didn’t lose too many readers and I’m really proud of that. Feel free to share this blog with anyone you know who is living with Chronic Illness. Growth is a good thing!
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.
Fibromyalgia is a multi-faceted disease that affects far more than just your muscles. One of the common conditions that Fibromites experience is problems with their bowels. IBS or Irritable Bowel Syndrome can be a stand alone disease, but is often found in those with Fibromyalgia.
When you have IBS, you can experience some or all of the following symptoms:
Abdominal pain and cramping that is typically relieved or partially relieved by passing a bowel movement
Diarrhea or constipation — sometimes alternating between the two and occaisionally having both happen during the same bowel movement
“Symptoms occurring outside of the digestive tract that might be related to IBS include sleep disturbances, chronic pelvic pain, interstitial cystitis, temporomandibular joint disorder, post-traumatic stress disorder, and migraine headaches. Female patients who have IBS have also reported discomfort during sexual intercourse (dyspareunia). Our survey of 2,961 respondents showed 32% have some form of mood disorder, 27% have gastroesophageal reflux disease, and 27% have anxiety disorder.”
It’s important to seek medical care when you experience bowel issues, to ensure that nothing more serious is going on. Don’t let embarrassment stop you. If you are experiencing any of the following, call and make an appointment:
Diarrhea at night
Iron deficiency anemia
Persistent pain that isn’t relieved by passing gas or a bowel movement
Seeing The Doctor
When you seek medical care for your IBS symptoms, the following actions may occur:
Medical History: A physician reviews the patient’s medical history, considering bowel function pattern, the nature and onset of symptoms, the presence or absence of other symptoms, and warning signs that might indicate some other diagnosis.
Physical Examination: During a physical evaluation, the bowel may have involuntary jerky muscular contractions (spastic) and seem tender; although the patient’s physical health usually appears normal in other respects.
Investigative Testing: A physician might request tests to rule out other possible diseases. In performing a scope, physicians view the intestinal tract with an instrument that enters the body via the mouth (gastroscopy) or the anus (colonoscopy/sigmoidoscopy). The scope is made of a hollow, flexible tube with a tiny light and video camera.
The physician may also request routine blood and stool tests to rule out known organic diseases. Some symptoms of celiac disease overlap those of IBS, so a family history of this disease might be a reason to test for it.
After other conditions have been ruled out, your doctor is likely to use one of these sets of diagnostic criteria for IBS:
Rome criteria. These criteria include abdominal pain and discomfort lasting on average at least one day a week in the last three months, associated with at least two of these factors: Pain and discomfort are related to defecation, the frequency of defecation is altered, or stool consistency is altered.
Manning criteria. These criteria focus on pain relieved by passing stool and on having incomplete bowel movements, mucus in the stool and changes in stool consistency. The more symptoms you have, the greater the likelihood of IBS.
Type of IBS. For the purpose of treatment, IBS can be divided into three types, based on your symptoms: constipation-predominant, diarrhea-predominant or mixed.
Treatment of IBS focuses on relieving symptoms so that you can live as normally as possible. These suggestions below come from The Mayo Clinic:
Mild signs and symptoms can often be controlled by managing stress and by making changes in your diet and lifestyle. Try to:
Avoid foods that trigger your symptoms
Eat high-fiber foods
Drink plenty of fluids
Get enough sleep
Your doctor might suggest that you eliminate from your diet:
High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.
A dietitian can help you with these diet changes.
If your problems are moderate or severe, your doctor might suggest counseling — especially if you have depression or if stress tends to worsen your symptoms.
In addition, based on your symptoms your doctor might suggest medications such as:
Fiber supplements. Taking a supplement such as psyllium (Metamucil) with fluids may help control constipation.
Laxatives. If fiber doesn’t help symptoms, your doctor may prescribe magnesium hydroxide oral (Phillips’ Milk of Magnesia) or polyethylene glycol (Miralax).
Anti-diarrheal medications. Over-the-counter medications, such as loperamide (Imodium), can help control diarrhea. Your doctor might also prescribe a bile acid binder, such as cholestyramine (Prevalite), colestipol (Colestid) or colesevelam (Welchol). Bile acid binders can cause bloating.
Anticholinergic medications. Medications such as dicyclomine (Bentyl) can help relieve painful bowel spasms. They are sometimes prescribed for people who have bouts of diarrhea. These medications are generally safe but can cause constipation, dry mouth and blurred vision.
Tricyclic antidepressants. This type of medication can help relieve depression as well as inhibit the activity of neurons that control the intestines to help reduce pain. If you have diarrhea and abdominal pain without depression, your doctor may suggest a lower than normal dose of imipramine (Tofranil), desipramine (Norpramine) or nortriptyline (Pamelor). Side effects — which might be reduced if you take the medication at bedtime — can include drowsiness, blurred vision, dizziness and dry mouth.
SSRI antidepressants. Selective serotonin reuptake inhibitor (SSRI) antidepressants, such as fluoxetine (Prozac, Sarafem) or paroxetine (Paxil), may help if you’re depressed and have pain and constipation.
Pain medications. Pregabalin (Lyrica) or gabapentin (Neurontin) might ease severe pain or bloating.
Medications specifically for IBS
Medications approved for certain people with IBS include:
Alosetron (Lotronex). Alosetron is designed to relax the colon and slow the movement of waste through the lower bowel. Alosetron can be prescribed only by doctors enrolled in a special program, is intended for severe cases of diarrhea-predominant IBS in women who haven’t responded to other treatments, and isn’t approved for use by men. It has been linked to rare but important side effects, so it should only be considered when other treatments aren’t successful.
Eluxadoline (Viberzi). Eluxadoline can ease diarrhea by reducing muscle contractions and fluid secretion in the intestine, and increasing muscle tone in the rectum. Side effects can include nausea, abdominal pain and mild constipation. Eluxadoline has also been associated with pancreatitis, which can be serious and more common in certain individuals.
Rifaximin (Xifaxan). This antibiotic can decrease bacterial overgrowth and diarrhea.
Lubiprostone (Amitiza). Lubiprostone can increase fluid secretion in your small intestine to help with the passage of stool. It’s approved for women who have IBS with constipation, and is generally prescribed only for women with severe symptoms that haven’t responded to other treatments.
Linaclotide (Linzess). Linaclotide also can increase fluid secretion in your small intestine to help you pass stool. Linaclotide can cause diarrhea, but taking the medication 30 to 60 minutes before eating might help.
Potential Future Treatments
Researchers are investigating new treatments for IBS. Serum-derived bovine immunoglobulin/protein isolate (SBI), a nutritional therapy, has shown some promise as a treatment for IBS with diarrhea.
Studies also show that, in people who have IBS with diarrhea, a specially coated tablet that slowly releases peppermint oil in the small intestine (enteric-coated peppermint oil) eases bloating, urgency, abdominal pain and pain while passing stool. It isn’t clear how enteric-coated peppermint oil might affect IBS, so ask your doctor before using it.
Although Bowel related issues can be embarrassing, it’s important to acknowledge and treat your symptoms to give you the best health possible. Make time to reduce stress in your life, follow a proper diet and get a good nights sleep…these three things can make a huge difference in your gut health. If nothing changes, see your doctor. Your good health depends on it.
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.
I am terrified of the dentist!!! I have a wonderful care provider who is gentle and kind but having to go see him, even for a cleaning, requires medication for anxiety. I was there recently for a cleaning, the right side one week and the left side the next
Here I am, high on Ativan, with my warm blankie and a bolster under my knees for comfort. You can see my look of trepidation!
And now to work!
Despite my fear, I do this because it’s good for my health. It can be painful in several ways, though. It reminded me how even “normal” things like the dentist aren’t easy when you live with Chronic Pain.
Here are a few tips to make your next visit easier.
Ask for a blanket and something for under your knees to help you feel more comfortable in the chair. Most dental offices are happy to provide these items. If there are headsets available, use one, or bring your own music to help keep you distracted.
Use sedation if necessary.
I use Ativan to help relieve my anxiety and it works wonders. It helps me stay relaxed during the visit and then conveniently helps me forget the visit when it’s over. You do need someone to drive you there and back again, but that’s a small price to pay for not being stressed out!
Keep regular appointments
By going for regular appointments, you lessen the amount of work that needs to be done at each cleaning and you catch any other problems sooner rather than later. Follow the schedule set by your dentist.
Maintain your oral health at home
Take care of your oral health at home with regular brushing, using a brush designed for your requirements (soft or medium bristles, spinning or regular, etc.). Use mouthwash to help protect your teeth and if you suffer from dry mouth (often a problem for those who live with Sjogren’s Syndrome), use a product designed to keep your mouth moist.
Floss your teeth with every brushing. It’s important to remove plaque that builds up and flossing is the best way of controlling this.
Limit Starchy and Sugary food and drinks
These items can lead to decay so it’s important that you limit them or use them in moderation to preserve your dental health.
Talk to your dentist about mouth pain
If you are experiencing any type of mouth or jaw pain, talk to your dentist to see if you are developing TMJ (temporomandibular joint). This painful condition can be treated in various ways including medication, a mouth guard or possibly surgery.
Be Aware Of Periodontal Disease
Periodontal disease can have serious effects on your health. If you notice that you have any of the symptoms of gum disease, call your doctor or dentist.
Red, swollen, or tender gums.
Bleeding when brushing or flossing.
Gums that are pulling away from the teeth.
Sores or colored patches in the mouth.
Persistent bad breath or a bad taste in your mouth.
Special Health Considerations*
Diabetes is a disease that affects your body’s ability to process sugar. It can be managed with treatment. Left untreated, it can cause many kinds of problems, including some in your mouth. These include:
Less saliva. This can make your mouth feel very dry.
More cavities. Saliva is needed to protect your teeth from cavities.
Gum disease. Your gums can become inflamed and bleed.
Slow healing. Cold sores or cuts in your mouth may take longer to heal.
Infections. You are more likely to get an infection in your mouth.
If you have poor oral health, you are more likely to get diabetes. Gum disease is an infection. Infections cause blood sugar to rise. If you have gum disease and don’t treat it, your blood sugar could increase. This can raise your risk of developing diabetes.
Your mouth contains hundreds of different kinds of bacteria. A healthy mouth has the ability to fight off the bad bacteria that cause disease. But when you have gum disease, an infection, or another problem in your mouth, you lose that ability to fight off those germs.
Many studies show an association between gum disease (also called periodontal disease) and cardiovascular disease. The bacteria in your mouth can cause certain types of infection and inflammation. This research suggests that heart disease, clogged arteries, and even stroke could be related to these types.
Another cardiovascular condition linked to oral health is endocarditis. This is an infection in your heart. It is usually caused by bacteria in the bloodstream that attach to weakened areas of the heart. These bacteria could come from your mouth, if your mouth’s normal defenses are down.
More than one-third of cancer patients experience problems with their mouth. Cancer and its treatment methods can weaken the body’s immune system. This makes you more likely to get an infection, especially if you have unhealthy gums. They also can cause side effects that affect your mouth. These include:
HIV and AIDS also weaken your immune system. That puts you more at risk of infections or other oral problems. It is common for people with HIV/AIDS to develop issues in their mouths, including:
Thrush (yeast infection of the mouth)
White lesions on the tongue
Serious gum disease and infection
Osteoporosis causes your bones to become weaker and more brittle. This could lead to bone loss in your teeth. You could eventually lose teeth because as they become weak and break. In addition, some medicines that treat osteoporosis can cause problems in the bones of the jaw.
Sexually transmitted infections
A number of different sexually transmitted infections (STIs) can cause symptoms in your mouth. These include:
HPV (human papillomavirus) – Some strains can cause warts in the mouth or throat. Other strains can cause head and neck cancers. These can be hard to detect. They usually develop at the base of the tongue, the tonsils, or the back of the throat.
Herpes – Herpes simplex virus type 1 causes cold sores and other mouth lesions. Type 2 usually causes blisters in the genitals. But both types can be passed between the genitals and mouth. So type 2 could also cause painful blisters in or around the mouth.
Gonorrhea – This bacterial infection can cause soreness and burning in your throat. Sometimes you may see white spots in your mouth, as well.
Syphilis – In its primary (first) stage, you may get sores (chancres) on your lips, tongue, or other places inside your mouth. The sores may go away, even if left untreated. But you will still have the infection and can spread it.
Severe gum disease has been linked to preterm labor and low birth weight in babies. Research suggests that oral bacteria can affect the placenta and interfere with the growth and development of the baby. It also shows that a severe oral infection could trigger labor too early. This could cause the baby to be born prematurely.
It is often advised that anyone who has had a hip replacement undergo a course of antibiotics prior to having dental work done. This is to prevent bacteria from entering the blood stream, which can cause problems such as infection with your hip replacement. Talk to your dentist to see what they advise.
Oral Health Care is important for everyone, but is especially critical if you live with Chronic Illness. See your dentist as recommended and don’t be afraid to call if you notice problems. If you are someone like myself who has a fear of the dentist, ask about solutions such as Ativan, or IV Sedation to make your appointment easier. Don’t let fear put you off from having the mouth and smile of your dreams! Remember…
****Trigger Warning: This post contains depictions of violence against women.
I’m writing about a difficult and personal subject today. Domestic Violence is rampant in North America, and around the world and while I could write a full book on the subject, I want to address it in the context of my own personal story – that of a person who also lived with Chronic Pain.
I met Dallas on Christmas Day of 1979 when I was 17 and he was 34. I was instantly smitten with him and he was a charmer who got what he wanted when he wanted it. I was delighted his attentions fell on me because I was lonely and on my own – hitchhiking my way around the US and far from any family or friends.
At first, I didn’t realize that Dallas was also a pathological liar. His natural ability to talk to anyone about anything and sound so convincing, plus his good looks had instantly blinded me to anything that could knock him off the pedestal I had placed him on. Oh sure, some things didn’t really “click” with me and he often told the same stories to people that built him up, but I didn’t really think about it.
I learned very quickly that Dallas was also a jealous man and didn’t like other men paying attention to me – especially when they talked to me. We were both traveling the country now, with no set plans in place, and of course he didn’t have a job (a very common scenario as I would soon figure out), but he was good at getting things from people and so we traipsed around, talking about “settling down” and heading to whatever destination would be best for Dallas to come up with a plan. That involved talking to people – or rather, him talking and me trying to make myself invisible.
The first time he hit me was after we had been sitting in a bar on the ground floor of the truck stop we were staying at. He had gone back to our room for something and when he came back, I was chatting to a gentleman next to me, who had literally just asked: “so how are you tonight”? Dallas grabbed me by the arm, dragged me to our room and then started screaming at me about being unfaithful. He backhanded me so hard, I fell across the bed and onto the floor. He yanked me up by my hair and hit me again and I just took it, I was so shocked. It was the first time of many this happened.
But I stayed. I had been living with Chronic Pain for a couple of years at this point in my life and when he wasn’t in a jealous mood, Dallas was so loving and considerate of me. He kept promising to find us a place and get a job and every few months that would happen. We’d settle somewhere, he’d start working and then do something stupid like write some bad checks or shoplift (or outright steal things from people), and we’d have to pack up and leave town, like regular thieves in the night.
Somehow, over time, this pattern became my fault though. If I WASN’T always in pain, we could just travel around the country – that was his theory. He wanted to be a truck driver, but had lost his license so wasn’t able to drive. He resented me for “holding him back from his dreams,” though I’m not sure how he actually reconciled those thoughts. What was apparent was that everything that went wrong was somehow my fault.
One night, while he was in a rage about life not turning out to be fair, he locked me outside of the wee trailer we staying at, in the middle of the night, while I was naked. It was pouring rain, there were no neighbours nearby (we were living out of town) and it was cold. I pounded on the door, but he wouldn’t let me in, and I finally was forced to hide out in the shed on the property, wrapped in a mouldy blanket I found.
The next morning, he acted like nothing had happened. He never apologised, not in words, but sometimes, he would treat me with kid gloves. I never knew from day to day, or even hour to hour, which version of Dallas I was going to get.
I spent 3 years with this man. At one point, he left me for another woman we had met after he completed a 3-month prison stint for a Parole Violation. I returned home to Canada, worked to save up some money and went back to the US to find him. I was that in love and desperate to be with him. So sad when I think about it now. I even ended up pregnant, until a fight with him turned physical and he beat me badly enough that I lost the baby.
We made up, again…I got pregnant for the second time and ended up giving birth to a lovely little boy on Jan. 30th. This time, we were going to do things right! We found a place in Bellingham, Washington to live, and Dallas began working as a house painter. For 6 months, he actually managed to stay at the same job…I truly thought he’d turned a new leaf, with his son being the motivating factor. We still fought viciously, but he only hit me a couple of times, so I thought we could still work things out. Then I became pregnant again when our son was only 6 months old.
This time, it was different. One day, he told me he was going to Seattle for a quote on a huge painting job that could really put us in the money. He left on a Thursday, promising he’d be back on Sunday night.
He never came back.
I sat at the window of the small room we lived in, waiting all Sunday night, not wanting to admit the truth but by end of the day Monday, I had to admit he was really gone. He abandoned his son and child to be, and me, the woman who had stood by him faithfully through all the pain and beatings and lies.
It took a long time for me to recover. I moved back home to Canada, gave birth to my daughter alone and became a single mom to two wonderful kids. I dreamed about Dallas all the time – what could I have done differently to make him happy? How could I have been a better person for him, so he wouldn’t beat me? What did I do that caused him to hate me so much and how could I track him down again?
I didn’t try to find him again. I did see him twice after he left – he contacted me and came to where I was, first when the kids were 1 and 2 and then again when they were 5 and 6. That was the last time I laid eyes on Dallas, and though I grieved for so many things, I had grown some self-esteem by that point and realized how much better I was on my own. I vowed I would never again be abused in any way.
Forms of Abuse
Physical abuse is probably what we think of first when we hear the word ‘abuse.’ There were always incidents of yelling and screaming at me, hitting me, pulling my hair, punching me in places that the bruises wouldn’t show and little shoves etc, in front of others to keep me under control. I learned quickly not to start conversations with people and to speak only when I was spoken to, so he didn’t get physical with me.
Mental abuse is almost harder to take than physical abuse. The bruises heal, but the words said cut deeply into the soul and you start to believe the things being said about you. I was repeatedly told I was a burden, stupid and incapable of doing the most basic things. He called me names on a constant basis, told me I was worthless and that I was lucky he let me stay with him.
Because Dallas often refused to settle down and work a steady job, money was always tight and we often didn’t know where we would eat on any given day. If we were somewhere settled, it was usually better for a bit, but when we were hitchhiking around, we were dependent on Soup Kitchens and Missions and Shelters for a meal. Sometimes I would have to prostitute myself in order for us to have money. I’m not proud of that, but I did what I needed to do in order to survive.
Security abuse is rarely talked about, but it’s when you don’t have the stability of a secure place to be. We slept under overpasses and in the desert, at shelters and missions, at the homes of people Dallas would befriend in our travels…we just never knew where we would be at any given time.
It was especially difficult when I was pregnant the first two times. In addition to my Chronic Pain, I was dealing with morning sickness and cravings, and my body ached in ways it never had before. When you sleep on concrete under an overpass with just a mover’s blanket for covering, it does a number on your body.
So, what are the lessons I learned here?
First off, I learned that nothing I could have done would have changed Dallas. Change has to come from within and you have to want to change in order to make change happen. He didn’t see anything wrong with the way we were living except I was a constant burden to him with my chronic pain. When he wasn’t treating me with kid gloves, he was screaming and berating me.
Secondly, I learned that sometimes, people don’t show you exactly who they are right from the start. It took me a long time to accept that the real Dallas was the one who stole and lied and hit and screamed – not the one who could charm the pants off of you.
Thirdly, I learned that there are various forms of abuse and being beaten isn’t the only way that someone can hurt you. It’s especially hard to accept abuse in your life when you already live with chronic pain or illness of some type.
Fourthly, I learned that there are ways of getting out, but you have to find your own inner strength to do it. You have to stop believing the lies being told about you and realize you are worthy of better treatment. For a long time, I didn’t believe that, and I put up with the abuse because that was all I knew. When Dallas was actually loving me, he loved me so good that I could forget the nightmarish parts of our life.
It wasn’t until the next incident would happen that would put him over the edge before I’d be right back in the middle of the terror and despair and wonder why I was allowing this to happen. My self-esteem was being beaten out of me at every turn and it came to the point that I accepted I really was as stupid and worthless as he made me out to be.
Words of Advice
Does any of this sound familiar to you? You may be a victim of Domestic Violence without even realizing it, especially if your spouse isn’t physically abusing you. Financial abuse (withholding money from you), emotional abuse (berating you and calling you names) and mental abuse (separating you from family and friends, keeping you from working, etc.) are all ways that you can be abused without recognizing it at first.
If you realize that are in an abusive situation, you need a plan to get out. Don’t believe for an instant when the person says they’re going to change. They’re not and they never will. It took me 3 whole years to realize that, 3 years of being beaten and downtrodden. Even after I was finally on my own, it took time to accept that I was the innocent party in all of this.
I had a lot of guilt. You may be experiencing some guilt, as well. If only…if only I’d been a better partner. If only I’d kept my mouth shut. If only the house was cleaner or the kids were better behaved. If only I hadn’t asked for grocery money or needed tampons. The “if onlys” are so hard to deal with, but you need to accept that you are not the one who is at fault. The abuser chooses to abuse…it’s as simple as that. We all have a choice in how we handle situations and most of us choose not to hurt other people.
There are shelters and organizations that can help you if you are in an abusive situation and need to get out. It’s true that most shelters are overcrowded, but you still owe it to yourself to try them. Talk to people who run them to find out what all your options are. Start building a plan to get out, even if it can’t happen immediately. Start by calling the crisis lines in your area or any mental health organization. Here’s a list to help you get started: List of International Domestic Violence Hotlines and Advocacy Organizations
Document everything that’s going on including injuries and outward marks on your body. If you’re able to take pictures that you can safely keep (or send to someone and then delete), do so. If you can safely keep a journal, do so. If you can safely confide in one person…do so. All of this will become helpful if you decide to prosecute your abuser.
Above all, remember that there is always hope. Do what you can to minimize the violence in your situation while looking for ways to get out safely. It may not seem possible now, but don’t give up hope. Confide in someone, and be prepared to make a clean break, without going back to the abuser. You have a beautiful future ahead of you and you deserve every good thing in your life. Remember…
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,
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.