It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!
Introduce yourself and tell us a bit about you…
Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry.
One fascinating fact about me is:
Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact.
Chronic illness(es)/disabilities I have…
Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former
My symptoms/condition began…
The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018
My diagnosis process was…
I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart.
When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines.
So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis
The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers
The hardest part of living with my illness/disabilities is…
The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain.
A typical day for me involves…
A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs
The one thing I cannot live without is…
Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them.
Being ill/disabled has taught me…
To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes
My support system is…
My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me
If I had one day symptom/disability-free I would…
Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life
One positive of having a chronic illness/disability is…
I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people.
One final thing I want people to know is:
Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day
Fibromyalgia is a condition that consists of widespread muscle pain, cognitive failures and fatigue. Because there is no standard blood test or other medical test to identify Fibro, doctors rely on Patient stories and history to make a determination, along with using the “tender point” test.
When you have Fibromyalgia, there are particular tender points that may be inflamed in 18 areas of your body. If you have pain in 11 of these areas, you are considered to have Fibromyalgia.
What happens if you are experiencing symptoms of Fibromyalgia but you DON’T have the tender points? It could be that something else is going on in your body that isn’t Fibro but is a different condition all together.
Here are some of the conditions that can mimic Fibro and a brief description of what each of them are:
1. Multiple Sclerosis
MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged.
MS is unpredictable and can cause symptoms such as extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. Its effects can be physical, emotional and financial. Currently there is no cure, but each day researchers are learning more about what causes MS and are zeroing in on ways to prevent it.
Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
Joint pain, stiffness and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
Skin lesions that appear or worsen with sun exposure (photosensitivity)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
Shortness of breath
Headaches, confusion and memory loss
Arthritis is the swelling and tenderness of one or more of your joints. The main symptoms of arthritis are joint pain and stiffness, which typically worsen with age. The most common types of arthritis are osteoarthritis and rheumatoid arthritis.
Osteoarthritis causes cartilage — the hard, slippery tissue that covers the ends of bones where they form a joint — to break down. Rheumatoid arthritis is a disease in which the immune system attacks the joints, beginning with the lining of joints.
Uric acid crystals, which form when there’s too much uric acid in your blood, can cause gout. Infections or underlying disease, such as psoriasis or lupus, can cause other types of arthritis.
The most common signs and symptoms of arthritis involve the joints. Depending on the type of arthritis you have, your signs and symptoms may include:
Decreased range of motion
4. Complex Regional Pain Syndrome
Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.
The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.
The key symptom is prolonged severe pain that may be constant. It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb. The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe. In rare cases, pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, known as allodynia, in which normal contact with the skin is experienced as very painful.
People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.
Other common features of CRPS include:
changes in skin texture on the affected area; it may appear shiny and thin
abnormal sweating pattern in the affected area or surrounding areas
changes in nail and hair growth patterns
stiffness in affected joints
problems coordinating muscle movement, with decreased ability to move the affected body part
abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.
Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and sometimes you may feel as if life isn’t worth living.
More than just a bout of the blues, depression isn’t a weakness and you can’t simply “snap out” of it. Depression may require long-term treatment. But don’t get discouraged. Most people with depression feel better with medication, psychotherapy or both. Although depression may occur only once during your life, people typically have multiple episodes. During these episodes, symptoms occur most of the day, nearly every day and may include:
Feelings of sadness, tearfulness, emptiness or hopelessness
Angry outbursts, irritability or frustration, even over small matters
Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
Sleep disturbances, including insomnia or sleeping too much
Tiredness and lack of energy, so even small tasks take extra effort
Reduced appetite and weight loss or increased cravings for food and weight gain
Anxiety, agitation or restlessness
Slowed thinking, speaking or body movements
Feelings of worthlessness or guilt, fixating on past failures or self-blame
Trouble thinking, concentrating, making decisions and remembering things
Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
Unexplained physical problems, such as back pain or headaches
Lymphoma is cancer that begins in infection-fighting cells of the immune system, called lymphocytes. These cells are in the lymph nodes, spleen, thymus, bone marrow, and other parts of the body. When you have lymphoma, lymphocytes change and grow out of control.
There are two main types of lymphoma:
Non-Hodgkin: Most people with lymphoma have this type.
Non-Hodgkin and Hodgkin lymphoma involve different types of lymphocyte cells. Every type of lymphoma grows at a different rate and responds differently to treatment.
Warning signs of lymphoma include:
Swollen glands (lymph nodes), often in the neck, armpit, or groin that are painless
Shortness of breath
7. Growing Pains
Growing pains are recurring pain symptoms that are relatively common in children ages 3 to 12. The pains normally appear at night and affect the calf or thigh muscles of both legs. The pain stops on its own before morning. Growing pains are one of the most common causes of recurring pain in children.
Growing pains usually cause an aching or throbbing feeling in the legs. This pain often occurs in the front of the thighs, the calves or behind the knees. Usually both legs hurt. Some children may also experience abdominal pain or headaches during episodes of growing pains. The pain doesn’t occur every day. It comes and goes.
Growing pains often strike in the late afternoon or early evening and disappear by morning. Sometimes the pain awakens a child in the middle of the night.
Consult your child’s doctor if you’re concerned about your child’s leg pain or the pain is:
Still present in the morning
Severe enough to interfere with your child’s normal activities
Located in the joints
Associated with an injury
Accompanied by other signs or symptoms, such as swelling, redness, tenderness, fever, limping, rash, loss of appetite, weakness or fatigue
As you can see, there are several conditions that can mimic the symptoms of Fibromyalgia, which is why it’s important to see your doctor as soon as possible, to get the proper diagnosis. Don’t let pain linger…if something doesn’t seem right in your body, get it checked out. Remember,
I want to talk about a difficult subject today…Chronic Pain and Addictions. When you live with Chronic Pain, you can find yourself spiraling in a dark hole. Sometimes depression becomes as big of a problem as the physical pain you live with, and in a desperate need to feel better, you find yourself turning to your medications too often, or you resort to drinking or eating as a way of filling the gap.
Addiction is easy to fall into, as often, you are not receiving adequate treatment for your pain to begin with. You find yourself taking your medictions sooner than directed, or you take more than recommended and then suddenly, you’re in withdrawal at the end of the month when your prescription has run out.
Instead of abusing your pain medications, you may turn to alcohol to increase the “buzz”, or food may become the drug of your choice. “Anything to dampen the pain” is what you might be thinking, and sometimes, it works. Other times, it feels like nothing can fill the unending gulf of pain you live with and so your depression deepens and you’re left feeling worthless. Thoughts of suicide may plague you but you resist telling others for fear they will see you as weak.
Let’s examine this problems in more detail.
Opioid abuse is an epidemic in the United States. In 2016, approximately 11.5 million Americans 12 years and older misused opioid pain medications, and 1.8 million had a substance use disorder involving prescription pain medications. From 2000 to 2015, more than 500,000 persons died from opioid overdoses, with deaths generally increasing as prescription opioid sales increased. In 2012, clinicians wrote 259 million prescriptions for opioids, enough for every U.S. adult.*
There are a variety of medications that are used in the treatment of Chronic Pain. As you probably know, there is a current push from to cut back on Opioids like Oxycodone and Hydrocodone because of perceived over-prescribing and the number of deaths linked to the mis-use of Opioids. The number of deaths from illegal Fentynal overdoses has increased dramatically, yet the people who actually require the drug for their Chronic Pain are being turned away by their physicians or are having their dosages cut back significantly.
PreGabalin, Gabapentin, and mixed drugs like Tramacet (Tramadol and Acetaminophen) are now being used more frequently, but not always to great benefit. This is one of the reasons the use of illegal Fentynal is increasing – people aren’t getting adequate relief from their doctor-prescribed medications and so they’re looking to the streets for solutions.
Throughout the ages, people have used alcohol to manage their pain. A swig of whiskey after a bullet wound in the old Westerns, or to numb the pain of a teething baby are two minor examples. A study done recently showed that 28% of people with Chronic Pain used alcohol to help control their pain**
Although alcohol has been shown to reduce pain, it’s a temporary solution and has potential and possible fatal risks. When you drink, you are more likely to abuse your prescription medications, resulting in furthering the sedative effects of both. You also increase the possibility of liver damage or gastric bleeding. Using alcohol as a pain medication often ends up with exceeding the recommended amount that you should drink and overdose of alcohol and/or prescription medications can be fatal.
Other points to note:
Withdrawal from chronic alcohol use often increases pain sensitivity which could motivate some people to continue drinking or even increase their drinking to reverse withdrawal-related increases in pain.
Prolonged, excessive alcohol exposure generates a painful small fiber peripheral neuropathy, the most common neurologic complication associated with alcoholism.
When a person is unable to control the amount of pain they live with, they may turn to food instead, as a way of finding relief. It doesn’t take away the pain, but satiating yourself gives back the illusion of that control that you’ve lost elsewhere. Anorexia and bingeing/purging become huge risks and lead to further medical problems.
Anorexia is the elimination of food from the diet, until your calorie intake is grossly under the recommended daily allowance for health. It is a psychological and potentially life-threatening eating disorder.
There are a multitude of health risks involved including mood swings, low blood pressure, heart problems, kidney and liver issues, loss of bone density and the very real possibility of death.
Bingeing and purging causes issues such as gastric problems, dental issues from vomiting and bile wearing at the teeth and gums, dehydration and depression issues. The use of excessive laxatives is hard on your bowels and runs the risk of chronic constipation, resulting in a Catch-22 of needing to use more laxatives to alleviate the constipation.
Excessive Exercise is another form of purging. By engaging in obscene amounts of exercise, you expose yourself to potential damage to your joints from overuse, dehydration, weakness and potential heart issues.
Other addictions to be careful about including smoking, gambling, shopping and sex although I’m sure you can think of even more. Each of these excessive behaviours can lead to damaging consequences so it’s imporant to be aware of them. When you live with Chronic Pain, you can have an “all or nothing” mentality – you simply want to do anything that will help you focus on something other than hurting.
The first step to any of these issues is to accept that you have a problem. Professional help is required to allow you to wean off of the drugs or alcohol, or to start a healthy relationship with food.
Support groups are available both in person and online and are highly recommended. To be with people who have gone through the same experiences as you have can be very comforting.
A Pain Management program may be suggested to help you get to the root of your problems, and to help you find solutions to managing your pain more effectively.
Talk to your family physician to start. Now is the time to be honest about what you’ve been going through and how you’ve been coping (or not coping). Accept that seeing a counsellor on a regular basis may be a requirement for your success. Having a safe place to talk goes a long way in setting goals for yourself and achieving them.
Ask about specific books that may help you understand Chronic Pain more completely. Knowledge is power.
Finally, realize that you are not a bad person. You may have made some bad choices, but recognizing them and changing them is what’s important. We all make mistakes, and even if you think you’re the worst person in the world…you’re not. You have value and worth and are deserving of the best care possible. Remember,
Today I’m featuring an article by Guest Author Nicole Ross Rollender. Her bio is at the bottom of the page. She’s written an excellent post about Omega-3s and Omega-6s and how important they are for our bodies. When you live with Chronic Pain, you know you need to do everything possible to maintain your overall health, and diet can play a part in that. Read on to see what Nicole has to say:
No doubt you’ve gotten the skinny on good fats (hello, omega-3) from your primary care doctor or nutritionist.
You’ve probably heard this before: Omega-3 fatty acids like EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid) are found in fish oils from salmon, krill, tuna, trout, mackerel, and sardines, along with oysters and crabs.
Clinical evidence suggests omega-3s like EPA and DHA help reduce risk factors for heart disease, including high cholesterol and high blood pressure, according to the University of Maryland Medical Center.
You’ll find other omega-3s like alpha-linolenic acid (ALA) in flaxseed, oils like canola and soybean, and nuts and seeds such as walnuts and sunflower, according to the Mayo Clinic.
Along with omega-3s, omega-6 fatty acids play a vital role in brain function, and our normal growth and development.
Bottom line: Your body needs fatty acids to function, and they pack some major health benefits.
However, not as many people have heard of omega-6s. Here’s what you need to know to ensure you’re getting enough (but not too much) of this important fat in your diet.
What Are PUFAs?
Here’s a quick chemistry lesson: Like omega-3, omega-6 is a type of polyunsaturated fatty acid (PUFA), a fat molecule containing more than one unsaturated carbon bond. For example, oils (like olive oil) that contain polyunsaturated fats are liquid at room temperature, but start to turn solid when chilled, according to the American Heart Association.
“Omega-6s are essential for a whole host of things: proper brain function, stimulating hair and skin growth, maintaining bone health, promoting normal growth and development, regulating metabolism, and maintaining a healthy reproductive system,” says Laura Ligos, MBA, RDN, CSSD, a Real Food registered dietitian at Albany, NY-based The Sassy Dietitian & Designed to Fit Nutrition.
PUFAs offer heart-health benefits when you eat them in moderation and use them to replace unhealthy saturated and trans fats in your diet, according to the Mayo Clinic.
There are saturated fats in animal-based foods, such as meats, poultry, lard, egg yolks and whole-fat dairy products like butter and cheese. They’re also in cocoa butter, and coconut, palm and other tropical oils used in coffee creamers and other processed foods.
Trans fats, also called hydrogenated and vegetable oils, are in hardened vegetable fats like stick butter – and make their way into crackers, cookies, cakes, candies, snack foods and French fries.
A good rule of thumb is to reduce foods high in saturated and trans fats in your diet. Instead, choose foods that include plenty of PUFAs – but don’t go overboard.
All fats, even good ones, are high in calories – they’re nine calories per gram.
The Omega-6/Omega-3 Ratio
Humans evolved on a diet balanced in omega-6 and omega-3 (1:1 ratio) essential fatty acids, according to the journal Nutrients. Today, though, the ratio for many people is a staggering 20:1, contributing to weight gain and other health issues.
“The ratio between omega-6 and omega-3 in our bodies should stay between 2:1 and 3:1,” Ligos says. “You’re heading into dangerous territory when your omega-6/omega-3 ratio is greater than 4:1.”
Both a high omega-6/omega-3 ratio and a high omega-6 fatty acid intake contribute to weight gain, whereas a high omega-3 fatty acid intake decreases your risk for weight gain, according to Nutrients.
“When there isn’t enough omega-6 in your diet, essential fatty acid deficiency can occur, leading to excessive thirst and skin lesions, as well as more serious issues like stunted growth, skin lesions, a fatty liver, and reproductive issues or failure,” Ligos says.
Conversely, too much omega-6 (and not enough omega-3) can cause inflammatory conditions including heart disease, elevated blood pressure, diabetic neuropathy, autoimmune conditions and more, Ligos notes.
Linolenic acid, often found in vegetable oils, is converted to gamma-linolenic acid (GLA) in the body. GLA is also found in plant-based oils like evening primrose oil, borage oil and black currant seed oil.
“There’s research to support taking a GLA supplement, an omega-6 fatty acid, to reduce inflammation, much unlike all other omega-6 fatty acids,” Ligos says.
The body converts GLA to DGLA, which fights inflammatory conditions, and having enough other nutrients like magnesium, zinc, and vitamins C, B3 and B6, promotes that conversion, the University of Maryland Medical Center says.
Where to Get Your Omega-6
The good news is most of us can get the right amount of omega-6 from a healthy diet alone.
“Omega-6 fatty acids are found primarily in vegetable and plant oils, including safflower, sunflower, grapeseed, corn, cottonseed, peanut, sesame, soybean and canola,” Ligos says.
At one time, researchers believed omega-6 fatty acids metabolized in the body to then inflame and damage artery linings, which could lead to heart disease.
After reviewing the findings, the American Heart Association recommended people eat between 5% and 10% of their daily calories from omega-6 fatty acids.
It’s a good idea to replace saturated fats from foods like meat, butter, cheese and deserts with plant-based foods containing omega-6 fatty acids, including vegetables oils, nuts and seeds is a good first step.
Flaxseed and hempseed oil, nuts, borage oil, evening primrose oil and black currant seed oil, and acai are other healthy sources of omega-6.
About The Author:
Nicole Rollender is a South New Jersey-based editor and writer. Her work has appeared in Good Housekeeping, Dr. Oz The Good Life, Woman’s Day and Cosmopolitan. She’s the author of the poetry collection Louder Than Everything You Love. Recently, she was named a Rising Star in FOLIO’s Top Women in Media awards and is a 2017 recipient of a New Jersey Council on the Arts poetry fellowship. Visit her online at www.strandwritingservices.com; on Facebook or Twitter.
For those with “invisible” illness, it’s difficult to find a doctor who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.
So what happens when you find that Physician and then they move on?
I started out by seeing a Naturopathic Doctor in Victoria because I needed nutritional care. My previous doctor had supplied me with enough of my prescriptions to last for 3 months, so that wasn’t as big a concern for me. Dr. Holewa let me know that a new GP would be opening his practice in the same clinic she was located and I called to be put on the waiting list to belong…news about the new doctor had already started circulating in the community and everyone was signing up!
I was still able to get an appointment though, for the last day before the Christmas holidays in 2013. It was basically an interview between the Doctor and me, to see if we were a fit and if he was willing to take me on as a patient, given my challenging health history. Dr. Leong and I really hit it off and he agreed to accept me into his practice (along with my husband). What a relief!
Now, I don’t know what it’s like to try and find a doctor where you live. If you are in the USA, I believe it’s fairly easy. The problem is finding the RIGHT doctor…one who meshes with you in terms of beliefs and who blends with your personality. You want strong medical knowledge, a good office staff, decent parking and hours and the feeling that you’ve found “the best” when you see him/her. I found all of that with Dr. Leong and so we began a 5-year patient/doctor relationship that took us through all my health problems, including my hip replacement, brush with skin cancer and more. And then one day, he told me he was leaving the practice and moving to a smaller town up-Island.
Closing The Practice
The word I heard most from his other patients has been “devastating,” I absolutely concurred. Dr. Leong was highly respected and well loved and the thought of being without him was almost too much to take in. His main reason for leaving was that he wanted to live in a smaller town, and at first, I thought I would simply continue to see him, as his new practice was only a 30-minute drive away. The reality though was that there were no buses that took me there and I would be forever reliant on my husband taking time off work to drive me. That just wasn’t feasible so not only was I losing a good Doctor, I was going to have to find a new one too (there were no plans to replace him in the clinic).
What’s the big deal? Well, as I said, there is a shortage of doctors in my Province. Recommendations filled my email, but the fact was no other doctor in town was taking on new patients. It looked like most of us were going to be resigned to using Urgent Care for our medical treatment. The thought of that filled me with dismay. I needed a good working relationship with my Doctor because of my history and that simply wouldn’t happen in an Urgent Care facility.
Then one day, about three weeks after first receiving the news, word came from the office receptionist that there was a new doctor in town who would be taking on a limited number of new patients. My clinic’s receptionist faxed the referral to the office where this new Doctor would be setting up – not that far from where I was currently going. It seemed that this Doctor had requested from several medical offices that they send their “best patients” to her…and I was one of them! Dr. Penny Wilson agreed to take me on along with my husband! What a relief!! She is here for a year from Australia but promised that if she decided to go back home at the end of the year, one of the other doctors in the new clinic would take us on. My relief was immense.
For those of you who are going through this situation right now, you have my sympathy and my empathy. It can be frightening to be left without a safety net. Keep asking at other offices about being put on a waiting list, and check with your family and friends to see if their doctor can take you on because of your relationship and closeness.
So what DO you do when your doctor leaves and there is no doctor to take over? I wish I had an answer for that. Many doctors have replacements come in when they leave, or the clinic they are leaving hires someone new. When that’s not in the works, you can be left scrambling and in the case of being a Patient with Chronic Pain, that’s so frustrating. Frequent visits are normal because of medication changes, new symptoms to be checked and old symptoms revisited. My best advice is to check with the Doctor who is leaving and ask if there is a succession plan. What do THEY recommend you do?
Having a Doctor leave his practice is a scary prospect. I hope that you never find yourself in the same position I was in, but if you do…I hope it works out well like it did for me. Keep the faith…remember,
For many years now, people with Fibromyalgia have been left in the dark when it comes to having a definitive test for the disease. The only reliable way to make a diagnosis currently is by listening to the patient’s description of symptoms and doing the standard 18 Trigger Point Test, in which you need to have 11 of the 18 tender points to qualify as having Fibromyalgia.
I’ve written in the past about a company that has come up with what they claim is a blood test that shows Fibromyalgia, but although it’s been approved by the FDA in the USA, it hasn’t been backed by any of the major medical foundations or research hospitals. Now there’s a new research study out and it might prove to be on the right track.
The research comes from Ohio State University and was reported in The Journal of Biological Chemistry. Here is what OSU is reporting about the study*:
For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis.
The discovery could be an important turning point in the care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.
Identification of biomarkers of the disease – a “metabolic fingerprint” like that discovered in the new study – could also open up the possibility of targeted treatments, he said.
Dr. Kevin Hackshaw examines fibromyalgia patient Barb Hartong at
The Ohio State University Wexner Medical Center.
To diagnose fibromyalgia, doctors now rely on patient-reported information about a multitude of symptoms and a physical evaluation of a patient’s pain, focusing on specific tender points, he said. But there’s no blood test – no clear-cut, easy-to-use tool to provide a quick answer.
“We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been,” Hackshaw said.
Though fibromyalgia is currently incurable and treatment is limited to exercise, education and antidepressants, accurate diagnosis has many benefits, Hackshaw said. Those include ruling out other diseases, confirming for patients that their symptoms are real and not imagined, and guiding doctors toward disease recognition and appropriate treatment.
“Most physicians nowadays don’t question whether fibromyalgia is real, but there are still sceptics out there,” Hackshaw said.
And many undiagnosed patients are prescribed opioids – strong, addictive painkillers that have not been shown to benefit people with the disease, he said.
“When you look at chronic pain clinics, about 40 per cent of patients on opioids meet the diagnostic criteria for fibromyalgia. Fibromyalgia often gets worse, and certainly doesn’t get better, with opioids.”
Hackshaw and co-author Luis Rodriguez-Saona, an expert in the advanced testing method used in the study, said the next step is a larger-scale clinical trial to determine if the success they saw in this research can be replicated.
The current study included 50 people with a fibromyalgia diagnosis, 29 with rheumatoid arthritis, 19 who have osteoarthritis and 23 with lupus.
We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been.
Dr. Kevin Hackshaw
Researchers examined blood samples from each participant using a technique called vibrational spectroscopy, which measures the energy level of molecules within the sample. Scientists in Rodriguez-Saona’s lab detected clear patterns that consistently set fibromyalgia patients’ blood sample results apart from those with other, similar disorders.
First, the researchers analyzed blood samples from participants whose disease status they knew so they could develop a baseline pattern for each diagnosis. Then, using two types of spectroscopy, they evaluated the rest of the samples blindly, without knowing the participants’ diagnoses, and accurately clustered every study participant into the appropriate disease category based on a molecular signature.
“These initial results are remarkable. If we can help speed diagnosis for these patients, their treatment will be better and they’ll likely have better outlooks. There’s nothing worse than being in a grey area where you don’t know what disease you have,” Rodriguez-Saona said.
Graduate student Didem Peren Aykas uses the experimental diagnostic tool, which measures metabolic activity in the blood, distinguishing fibromyalgia from other chronic pain conditions with near 100 per cent accuracy.
His lab mostly concerns itself with using the metabolic fingerprinting technology for food-related research, focusing on issues such as adulteration of milk and cooking oils and helping agriculture companies figure out which plants are best suited to fight disease.
The chance to partner with medical experts to help solve the problem of fibromyalgia misdiagnosis was exciting, said Rodriguez-Saona, a professor of food science and technology at Ohio State. Rodriguez-Saona said for the next study he’d like to examine 150 to 200 subjects per disease group to see if the findings of this research are replicable in a larger, more diverse population. Hackshaw said his goal is to have a test ready for widespread use within five years.
Fibromyalgia is the most common cause of chronic widespread pain in the United States, and disproportionately affects women. The U.S. Centers for Disease Control and Prevention estimates that about 2 per cent of the population – around 4 million adults – has fibromyalgia. Other organizations estimate even higher numbers.
About three in four people with fibromyalgia have not received an accurate diagnosis, according to previous research, and those who do know they have the disease waited for an average of five years between symptom onset and diagnosis. Common symptoms include pain and stiffness all over the body, fatigue, depression, anxiety, sleep problems, headaches and problems with thinking, memory and concentration.
Eventually, this work could lead to the identification of a particular protein or acid – or combination of molecules – that is linked to fibromyalgia, Rodriguez-Saona said.
“We can look back into some of these fingerprints and potentially identify some of the chemicals associated with the differences we are seeing,” he said.
In addition to identifying fibromyalgia, the researchers also found evidence that the metabolic fingerprinting technique has the potential to determine the severity of fibromyalgia in an individual patient.
“This could lead to better, more directed treatment for patients,” Hackshaw said.
Other Ohio State researchers involved with the study were Didem Aykas, Gregory Sigurdson, Marcal Plans Pujolras, Francesca Madiai, Lianbo Yu and Monica Giusti. Tony Buffington, formerly of Ohio State and now at the University of California, Davis, was also a co-author.
The research was supported in part by the Columbus Medical Research Foundation.
These are exciting times to be in research for Fibromyalgia. Remember
Fibromyalgia is a difficult condition to treat because no one seems to present with the same set of symptoms. Every person describes their pain in different ways (aching, throbbing, burning) and their pain can manifest in different parts of the body than where you may experience it. One treatment option is to use Supplements to help the body where it may be lacking in a certain substance.
How Do Vitamins Work?*
A vitamin is a small molecule that your body needs to carry out a certain reaction. Your body has no way to create vitamin molecules itself, so the vitamin molecules must come in through food that you eat. The human body is known to need at least 13 different vitamins:
In the body, proteins, carbohydrates, and fats combine with other substances to yield energy and build tissues. These chemical reactions are catalyzed, or accelerated, by enzymes produced from specific vitamins, and they take place in specific parts of the body.
The vitamins needed by humans are divided into two categories: water-soluble vitamins (the B vitamins and vitamin C) and fat-soluble vitamins (A, D, E, and K). The water-soluble vitamins are absorbed by the intestine and carried by the circulatory system to the specific tissues where they will be put into use. The B vitamins act as coenzymes, compounds that unite with a protein component called an apoenzyme to form an active enzyme. The enzyme then acts as a catalyst in the chemical reactions that transfer energy from the basic food elements to the body. It is not known whether vitamin C acts as a coenzyme.
When a person takes in more water-soluble vitamins than are needed, small amounts are stored in body tissue, but most of the excess is excreted in the urine. Because water-soluble vitamins are not stored in the body in appreciable amounts, a daily supply is essential to prevent depletion.
Fat-soluble vitamins seem to have highly specialized functions. The intestine absorbs fat-soluble vitamins, and the lymph system carries these vitamins to the different parts of the body. Fat-soluble vitamins are involved in maintaining the structure of cell membranes. It is also believed that fat-soluble vitamins are responsible for the synthesis of certain enzymes.
The body can store larger amounts of fat-soluble vitamins than of water-soluble vitamins. The liver provides the chief storage tissue for vitamins A and D, while vitamin E is stored in body fat and to a lesser extent in reproductive organs. Relatively little vitamin K is stored. Excessive intake of fat-soluble vitamins, particularly vitamins A and D, can lead to toxic levels in the body.
Many vitamins work together to regulate several processes within the body. A lack of vitamins or a diet that does not provide adequate amounts of certain vitamins can upset the body’s internal balance or block one or more metabolic reactions*.
Why Do I Need Vitamins?
Optimal nutrition creates a body that is strong and healthy. When you live with Fibromyalgia, you may be at risk of poor nutrition, due to various factors. Some reasons contributing to your fibromyalgia nutrition problems can be:
1) lack of nutrients in the food you consume 2) lack of nutrients in the soil in which your food is grown 3) a spasm in the artery leading to the muscle 4) poor digestion 5) lack of exercise 6) stress (which increases your demand for nutrients) 7) chronic fatigue 8) hormonal imbalances 9) viruses and toxins 10) chronic pain, which makes it difficult to eat
Which Vitamins Are Best For Fibromyalgia
The above chart can help you determine which vitamins might be best for you. Where possible, it’s always best to get your vitamins from a natural food source, but supplements are fine as well. Talk to your doctor so that the two of you are working together to find a plan that fits with your current medications and lifestyle.
In particular, pay attention to the B Vitamins, Vitamin C, Vitamin D and Magnesium. These four are the powerhouses for Fibromyalgia, working on bones and muscles as well as nerves. Since Fibromyalgia is thought to be a condition in which the messages between the brain and the nerves to the spinal cord are messed up, good nerve function is critical to the care of your Fibromyalgia. Magnesium can help with the heavy muscle pain that Fibromites often feel. The B Vitamins are crucial for maintaining your overall good health, including that of the muscles and nervous system.
Other Supplements That May Help
S-Adenosyl methionine, more commonly known as SAMe, is a synthetic form of a compound the body naturally produces.
We need it for proper immune function, and it plays a role in forming cartilage and our DNA. As we age, our bodies produce less of it, which may explain the increased aches we feel after each new birthday. Taking a SAMe supplement not only lessens chronic pain, but it also can boost your spirits, as it assists in the production and breakdown of neurotransmitters, such as serotonin, norepinephrine and dopamine – brain hormones that influence and regulate moods.
Because of its omega-3 fatty acids, fish oil has terrific anti-inflammatory properties, which can help reduce fibro pain. It reduces the body’s production of inflammatory hormones (prostaglandins) and that may mean less stiffness or fewer tender joints.
The recommended dosage is 1 or 2 capsules (or 1 or 2 tablespoons) daily to reduce inflammation and boost your immunity. But check with your doctor first – especially if you take blood-thinning medications, such as aspirin or warfarin (Coumadin).
Tight muscles are a common cause of fibro pain. To relax and release, muscles need energy and that’s where ribose supplements come in.
Ribose, a simple sugar, can increase energy by an average of 61% – and cut the pain experienced by fibromyalgia sufferers by an average of 15.6%, according to a 2012 study published in The Open Pain Journal. The author of the study recommends a 5 g dose three times a day.
Brown Seaweed Extract
You may not be familiar with these capsules, but this supplement is one to look for. It’s showing great promise in the fight against chronic pain.
In fact, taking 1,000 mg of brown seaweed extract daily can reduce joint pain and stiffness by 52%, according to a 2011 study from Australia’s Centre of Health and Wellbeing, published in the journal Biologics. Even better: These benefits kicked in after just one week, so you don’t have to wait long to find out if it’s working for you.
There are many options available to you in regards to Vitamins and Supplements when it comes to treating your Fibromyalgia. Check with your doctor for more information and find the ones that may work for you.
If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.
My many faces of pain
I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.
1. THERE IS ALWAYS HOPE
No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.
2. A GOOD DOCTOR IS TO BE TREASURED
Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.
3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE
Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.
4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS
Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain? Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.
My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.
5. DID I MENTION, THE PAIN NEVER GOES AWAY.
Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.
6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS
In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.
7. PACING REALLY DOES WORK
One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.
8. SLEEP IS A VERY GOOD THING
Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.
9. WE ARE ALL WARRIORS
Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.
10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS
For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.
I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.
I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,
Let’s welcome our next guest, the adorable Amber Blackburn!
Introduce yourself and tell us a bit about you…
Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States. I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!
Chronic illness(es)/disabilities I have…
Way too many for someone my age! I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.
My symptoms/condition began and My diagnosis process was…
I am going to combine these two questions as it makes my response easier.
I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.
So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS. The hardest part of living with my illness/disabilities is…
If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.
A typical day for me involves…
A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.
I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.
The one thing I cannot live without is…
I hate to admit this, my phone. I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.
Being chronically ill/disabled has taught me…
Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.
What advice would I give someone recently diagnosed…
The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group! No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.
My support system is…
My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky. If I had one day symptom/disability-free I would…
Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.
One positive of having a chronic illness/disability is…
One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.