I will be taking a short hiatus from blogging as I am dealing with some issues related to my Bipolar Disorder. I have been in a BD depression for several weeks now and have had some days so bad, I considered suicide.
The main issue is that I need to change my medications again as my current regiment has stopped working. I have been living with debilitating brain zaps that feel like an electrical current zipping through my brain. These leave me feeling dizzy and disoriented, and being on the computer is difficult during those times.
I will be back!! I refuse to let this defeat me, but I do need to take some time away until I have my BD back under control. It’s hard enough living with the physical pain of Fibromyalgia, Osteoarthritis, D.I.S.H., and more, but adding the mental health burden has become too much.
Thank you for your loyalty. Comments are appreciated.
Let’s start the New Year with a review of 10 Symptoms you may experience with Fibromyalgia.
Fibromyalgia is a tricky condition to live with as there are many symptoms you can experience beyond Pain and Fatigue. Here are 10 of the top symptoms you may experience and how to manage them.
1. Brain Fog
This is a cognitive impairment that causes problems such as temporary loss of memory, forgetting words or mixing up words, losing your train of thought, or saying things that don’t make sense. It can be frightening when it happens, as these are also signs of other conditions, such as Alzheimers Disease.
Your doctor can do some mental testing to make sure the symptoms you’re experiencing aren’t being caused by some other condition. Ways you can help yourself include keeping a notebook with you to write down important information, taking a moment to pause and collect your thoughts, and keeping a sense of humour about the situation. If you tend to panic about having this happen, laughing is a good way to keep things light while allowing you to start over with what you were saying.
2. Jaw Pain
Jaw pain in the joints on either one or both sides can be mistaken for TMJ (temporomandibular joint disfunction). Pain and swelling are the common symptoms of jaw pain along with stiffness and being unable to open the mouth without pain.
Gentle stretching exercises and muscle relaxants may be helpful in managing the pain. If only one side is affected, try chewing on the other side to relieve pain. If you hear popping or clicking, or if your jaw seems to be “out of joint”, see your dentist to rule out TMJ or other conditions.
3. Urinary Problems
If you are having difficulty with urinating, whether it’s a problem with urgency, leakage or straining, it’s good to check with your doctor to make sure there’s no underlying problem.
Having Fibromyalgia can affect the bladder and kidneys, causing the above symptoms. Some solutions include urinating on a schedule, doing Kegels, seeing a Pelvic Floor Physiotherapist, and using bladder control products for leakage issues.
4. Body Temperature
People with Fibromyalgia may have difficulty in regulating their body temperature. In my case, I can have cold skin and goosebumps, yet be sweating from overheating at the same time. It’s a very disconcerting feeling.
Things that may help include keeping a light blanket or sweater nearby for chills and a fan for when heat becomes a problem. I have found that keeping my feet warm helps with the chills and then using a fan helps ward off the sweating.
5. Weight Gain
Weight gain is often caused because of medications you may be taking for your Fibromyalgia. Even if you’re not taking prescriptions, you may find you’re still gaining weight – it’s one of the anomalies of having Fibro. The only way to lose weight is by taking in less calories than you are expending. Fad diets may work for a short period of time, but in general are unsustainable.
Following a proper eating plan from all 4 food groups is essential and exercise is as well. You may find walking helpful (consider using walking poles for extra stability) or water activities, such as Aquafit, Deep Water Workouts, or Pool Walking to be helpful.
6. Chest Pain
Chest pain can be a scary symptom of Fibromyalgia and should always be checked out by a medical professional if you experience the following:
Pressure, tightness, pain, or a squeezing or aching sensation in your chest or arms that may spread to your neck, jaw or back.
Nausea, indigestion, heartburn or abdominal pain.
Shortness of breath.
Lightheadedness or sudden dizziness.
The cause of chest pain in Fibromyalgia is often because of something called Costochondritis, which is an inflammation of the cartilage around the ribs. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction.
Treatment includes anti-inflammatory pain relievers such as Ibuprofen or Naproxen and using either heat or ice (which ever feels best for you).
7. Sleep Disorders
Pain can keep you from getting the sleep you need. You may also be experiencing Restless Leg Syndrome and not even be aware of it. Sleep Apnea is another problem that you may be facing and all of these issues can prevent you from getting the deep REM sleep that is necessary to repair the body.
Good sleep hygiene is important to follow. You may want to keep a notebook to jot down your thoughts when you wake at night to see if there is a pattern. Keep the room cool, avoid using electronics for one hour before bed, and try using a weighted blanket to see if that helps.
8. Digestive Problems
When you have Fibromyalgia, you may experience digestive disorders including nausea, vomiting, diarrhea or constipation (or occasionally both), heartburn and a general sense of feeling “unwell”.
Drinking peppermint tea can help with nausea, eating smaller more frequent meals might make a difference and trying to set up a schedule for bowel movements can help relieve discomfort. Metamucil or other Fibre supplements every day can be helpful for the bowels without resorting to laxatives.
If symptoms persist, see your doctor to rule out other potential problems.
9. Skin Problems
Itching, rashes, hives and tiny red marks can often show up when you have Fibromyalgia. Skin may become more sensitive to soaps and fragrances and you may discover that your normally dry skin has become oily or vice versa.
Use of a mild cleanser for face and body is imperative, especially ones containing oatmeal. Antihistimines are suggested when hives and itching become a problem and the tiny red marks that might show up on your skin are harmless.
If you have problems with skin rash, see your doctor who may recommend a dermatologist for further treatment.
Depression and Fibromyalgia may go hand in hand without you realizing you are showing signs. If you are finding yourself struggling to maintain interest in former activities, you’re isolating yourself, eating less or more than usual or have been unable to shake “the blues”, you may be experiencing Depression.
Treatment includes Cognitive Behavior Therapy (CBT) and often, medications. There is no shame to having Depression – you haven’t done anything wrong. You’re not weak, your body is showing signs of a chemical imbalance which should be treated like any other medical problem.
If you are feeling so depressed that you are suicidal, please call a hotline for help. You can find more information on hotlines here for Canada and here for the United States. In the UK, you can use this page for help.
There are over 60 different symptoms that relate to Fibromyalgia. These 10 are just the tip of the iceberg, but are the ones more commonly experienced.
If you are experiencing something new, or if a symptom you’ve had for awhile changes, it’s always important to see your doctor, to rule out anything outside of Fibromyalgia. Better safe than sorry is certainly the key here. And remember…
Fibromyalgia is a complex condition that affects millions of people around the world. There are many questions that people ask when they first find out they have Fibro, and I thought I’d answer some of the more common ones, to help provide some education.
What Are The First Signs Of Fibromyalgia
There are many signs of Fibro but the ones most people experience first is widespread pain and tenderness throughout the body. You may experience pain in only one or two areas, or it may be your entire body. Typically, there are tenderpoints at 18 specific sites on your body, and these are used to help determine if you have Fibro.
Other symptoms of Fibro include:
What Are Tender Points?
Tender points refer to 18 locations on the body that are ultra-sensitive to pain when touched or pressed. Fibro is frequently diagnosed using the Tender Point Test…if you have 11 of the 18 points, you are considered to have Fibro.
Is Fibromyalgia An Autoimmune Disease?
Fibromyalgia is NOT considered an autoimmune disease. Instead, researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Fibromyalgia doesn’t qualify as an autoimmune disorder because it doesn’t cause inflammation. Fibromyalgia is difficult to diagnose because its symptoms are similar or associated with other conditions, including some autoimmune disorders.
In many cases, fibromyalgia can occur simultaneously with autoimmune disorders.
Emotional or physical trauma can cause the development of fibromyalgia and trigger symptom flare-ups. The mechanism behind this is associated with the affected individual’s hypothalamic-pituitary-adrenal axis. Emotional stressors can cause the physiological stress response to become activated, and lead to the delivery of sensory input information to the brain.
Repeated and excessive stimulation of the functional units of this response in an individual can cause their effector systems to become more sensitive. Greater sensitivity causes alternative or less significant stressors to activate the stress response easily.
The combination of the stress response, emotional reactions, physiological responses, and biological reactions that occur and interact with each other due to physical and emotional trauma can cause the development of fibromyalgia.
Of the population of fibromyalgia patients, around half has existing post-traumatic stress disorder, and two-thirds of these individuals had developed fibromyalgia after the commencement of their PTSD. Some individuals may be at an increased risk of developing fibromyalgia due to the failure of certain psychological buffers to work effectively on emotional stress that is caused by everyday life events.
Physical trauma contributes because it causes emotional stress. These mechanisms related to the patient’s brain may primarily drive the chain of neurophysiological responses known to cause fibromyalgia.
Is Fibromyalgia Real or Fake?
Doctors and patients alike state that fibromyalgia is a very real condition. Pain is often subjective and can be difficult to measure. Because there are no lab tests that can show Fibromyalgia, people assume that it is fake. As a result, the most common misconception about fibromyalgia is that it isn’t a real condition.
In both Canada and the United States, fibromyalgia is now considered a condition that qualifies for Disability. The European Parliament has signed a declaration calling for the recognition of fibromyalgia as a disease which causes disability with a right to claim exemption.
What Are The Best Medications For Fibromyalgia?
NSAIDs (non-steroidal anti-inflammatory drugs) like naproxen (Aleve) and ibuprofen (Motrin, Advil) don’t appear to work for fibromyalgia pain. Opioid narcotics are powerful pain-relieving medications that work for some types of pain, but they don’t always work for fibromyalgia. They can also be harmful—and addictive.
The narcotic-like Tramadol (Ultram) has been shown to have some effectiveness with Fibromyalgia for pain relief. Low-dose amitriptyline can also be helpful. Tizanidine and cyclobenzaprine are muscle relaxants that help treat muscle pain from fibromyalgia.
There are three medications that have been approved for use for fibromyalgia. These medications include Cymbalta (duloxetine), Savella (milnacipran) and Lyrica (pregabalin).
Each of them works in the brain: Cymbalta and Savella belong to a class of medications called serotonin and norepinephrine reuptake inhibitors (SNRIs) whereas Lyrica is a drug that targets nerve signals. It has long been used to relieve nerve pain in patients with shingles and diabetic neuropathy. It is also used to treat partial seizures.
For other treatments, this post offers several suggestions for ways to help with Fibro pain. Another option is to try Cannabis or CBD Oil.
How Life Changing Is Fibromyalgia?
Fibromyalgia can affect you in both mild and severe forms. You may find that with medication, you are able to continue to work and engage in other activities without discomfort. Other people find that even with medications, they are in too much pain to maintain their previous lifestyles.
Disability may need to be sought if you are unable to continue working because of your Fibro. You may need to modifiy activities, use mobility aids or adaptive devices or otherwise change your lifestyle to accomodate your pain and fatigue. Every individual will feel their Fibro differently and you may find that your condition changes constantly as well.
What Helps Fibromyalgia?
Rest, good nutrition, mild exercise and a positive frame of mind all go a long way in helping to live with Fibromyalgia. Lack of movement is one of the biggest mistakes you can make if you have Fibro. It causes your muscles to tighten even more, so exercise such as walking, biking or swimming can be helpful in keeping you flexible and having less pain.
A diet rich in fruits and vegetables, lean protein and good carbohydrates is essential. If you are overweight, you might want to try losing some extra pounds to help with joint pain.
Getting the proper amount of sleep can be very difficult with Fibromyalgia. Follow a sleep plan at night to get your best rest possible and nap if you need to during the day in moderation. A well-rested body is better able to function fully.
Finally, try to maintain a positive perspective. If you find yourself struggling with negative thoughts, it may be helpful to seek counselling or coaching. Support groups either in-person or online can also be very helpful.
Fibromyalgia can be a very difficult condition to diagnose and treat, but as you can see, there are things you can do that make a difference. The more you can educate yourself, the better your outcomes can be. Remember,
Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.
Here is a list of 10 Celebrities who live with Fibromyalgia.
Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.
In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.
“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.
Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.
In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.
In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.
Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”
Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”
Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.
“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”
Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.
“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.
“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”
McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.
“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed.
A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.
Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.
Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.
“I had no idea I was chronically dissatisfied,” she saidabout being prescribed an antidepressant for her fibromyalgia.
Michael James Hastings
Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.
Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.
“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.
Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.
In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”
Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”
Young indicated that she hoped to spend some time healing and then return to the show.
It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…
If you ask someone how they slept last night, chances are you’ll get one of two answers – “fantastic” or “not at all”. It seems like a lot of people have trouble getting a good night’s sleep. The reasons can be many – having young children, an uncomfortable bed, too hot, too cold, too much stress…the list goes on.
When you live with Chronic Pain, it’s an entirely different story. Pain is usually the main factor in keeping us awake, and the likelihood of a good night’s sleep is generally not to be expected. Read on to find out more about what it takes for a good night snooze.
Sleep And Your Immune System
Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye. Chronic sleep loss even makes the flu vaccine less effective by reducing your body’s ability to respond.
Stock Up on Naps
To stay healthy, especially during the influenza season, get the recommended seven to eight hours of sleep a night. This will help keep your immune system in fighting shape and also protect you from other health issues including heart disease, diabetes, and obesity. If your sleep schedule is interrupted by a busy workweek or other factors, try to make up for the lost rest with naps. Taking two naps that are no longer than 30 minutes each —one in the morning and one in the afternoon—has been shown to help decrease stress and offset the negative effects that sleep deprivation has on the immune system. If you can’t swing a half-hour nap during the workday, try grabbing a 20-minute siesta on your lunch hour, and another right before dinner.
Other Healthy Tactics
Of course, there’s more to boosting your immunity and guarding against illness than getting ample sleep. It’s also important to practice smart stay-healthy strategies such as washing your hands with soap regularly, avoiding close contact with people who are obviously under the weather and talking with your doctor about getting an annual flu shot. And remember: Even if you do come down with a case of seasonal sniffles, you’ll be able to bounce back faster if your body is well rested.
11 Tips For A Better Sleep
Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
Set a bedtime that is early enough for you to get at least 7 hours of sleep.
Don’t go to bed unless you are sleepy. If you don’t fall asleep after 20 minutes, get out of bed.
Establish a relaxing bedtime routine. Use your bed only for sleep and sex.
Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
Limit exposure to bright light in the evenings. Turn off electronic devices at least 30 minutes before bedtime.
Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
Exercise regularly and maintain a healthy diet.
Avoid consuming caffeine in the late afternoon or evening.
Avoid consuming alcohol before bedtime.
Reduce your fluid intake before bedtime.
Take your medications on a regular basis. If you take sleeping meds, take them on a regular basis as directed instead of just hit and miss each night.
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,
Readers, thank you for checking out our final Interviewee – the fabulous Terri Sutula.
Introduce yourself and tell us a bit about you…
Hi, I’m Terri Sutula, and I currently live in the state of Virginia, USA. I’ve been married to the love of my life for the last 21 years, and I’m the Mom of a fabulous grown son. I served 20 years in the Air Force, and after I retired, I went back to school and received my degree in Religion (emphasis church ministry), then obtained my certifications in Personal Training and Health Coaching with the goal of developing a whole-person health ministry. Those plans took a bit of a turn in 2011…. Now I consider my blog to be my ministry, and I hope that by sharing my journey, setbacks and all, I can let people know that there is still life – a great life – after diagnosis, and help them avoid the hopelessness I felt at one point during my illness.
One fascinating fact about me is:
I don’t know if I’d call it fascinating, but it’s something my family loves to tease me about…. I’m constantly making up silly songs to popular tunes. I just can’t seem to help myself haha.
Chronic illness(es)/disabilities I have…
My main issue is fibromyalgia, though I’ve suffered from migraines my entire life, and have also lived with endometriosis, early osteoporosis (probably from the endometriosis treatment), and irritable bowel syndrome for years.
My symptoms/condition began…
Around 2011, my primary fibromyalgia symptoms began after a “snowball” of illnesses, accidents, and a stressful move. I got the flu and soon after that, was diagnosed with subacute thyroiditis, which resolved after about a year. During the same period, I had a couple of bad falls which ended with me doing a face-plant on the pavement. My second fall ended in a trip to the Emergency Room and pain in my ribs for months afterwards. Then, about a year later, we moved to another city, and everything that could go wrong did. I became extremely stressed out, my abdominal symptoms got worse and worse, and the fatigue and whole-body pain became overwhelming.
My diagnosis process was…
Surprisingly enough, my diagnosis process was pretty quick and easy. I went to my Primary Care doctor, explained my symptoms and my accompanying illnesses, and he checked me for tender points, did some bloodwork, and confirmed what I suspected – that I had fibromyalgia.
The hardest part of living with my illness/disabilities is…
The hardest thing for me to come to terms with is my physical limitations. As I mentioned earlier, I was in the military for 20 years, stayed mentally and physically strong, and was capable of doing pretty much anything I put my mind to. Learning to work within my revised capabilities has really been a challenge, but it has also been a time of growth. It’s given me greater empathy for others and I’ve discovered a new sense of purpose.
A typical day for me involves…
I’m not sure I have a really “typical” day – I just do whatever needs to be done on a given day. I do try to do some blog work most days, and I break my cleaning chores into different days so I’m not trying to do everything at once. We’ve started picking up groceries for a few days at a time rather than doing a “big” shopping trip once a week. It gets me out of the house and helps me work with my energy levels. It’s a lot easier to run into the store for a few things than to spend a long time shopping. I guess I’d say I do all the “normal” things others do, just on a smaller, more relaxed scale. I’ve learned that pacing my activities is key to keeping flares at bay.
The one thing I cannot live without is…
I have to say that there are actually two things I can’t live without, my faith and a sense of humour. Both of these are my keys to not just surviving, but thriving, with fibromyalgia and any other adverse event or circumstance that comes my way.
Being ill/disabled has taught me…
This illness has taught me that it’s okay to ask for help, and it’s okay to not be okay sometimes. I’ve learned that I don’t have to be strong all the time; it’s okay to share the load with others and asking for help isn’t a sign of weakness; it’s actually a sign of strength.
My support system is…
My absolute biggest supporter is my husband, and I’m so grateful to have him. I’m very fortunate to have a really supportive family in general, but he’s my day-by-day, minute-by-minute supporter. He sees what I go through many days and is always willing to do whatever I need him to do.
If I had one-day symptom/disability-free I would…
I would go hiking on one of the beautiful trails we have around here. My hubby and I used to love to pack a picnic lunch and go hiking, and unfortunately, my pain and energy levels don’t allow us to do that right now. My goal is to work my way up to at least some of the easy trails.
One positive of having a chronic illness/disability is…
You find out what’s really important to you when you have a chronic illness/disability. When you aren’t in such a place of “doing” all the time, as I was before I became ill, you can concentrate on the things that really add the most value and joy to your life.
One final thing I want people to know is:
There is hope, and there is a fulfilling life after diagnosis. Your life might not look exactly the way you imagined and you might have to learn to adjust to your “new normal” but this new phase of your life might open up even greater opportunities for you to live a life of joy and purpose.
It’s time for our next guest, the delightful Jill Goodpasture!
Introduce yourself and tell us a bit about you…
My name is Jill Goodpasture aka Fibroscoop. I have been writing my blog The Scoop on Fibromyalgia and Chronic Illnesses for a year now. I am a divorced mom of 2 teenage boys, 15 and 19. My oldest just left home so things have just changed around the house recently. I also have 3 furbabies and Sophie my support dog is frequently featured on the blog. She is just too stinking cute not to get on there occasionally.
Chronic illness(es)/disabilities I have…
I have Fibromyalgia, Early Degenerative Arthritis in my lower back and hips, Plantar Fasciitis, Narcolepsy, Sleep Apnea, Depression, and Anxiety.
My symptoms/condition began/My diagnosis process was…
In the spring of 2016, I started to have trouble with plantar fasciitis for a second time. I went back to the podiatrist who treated it the first time with cortisone shots. This time the shots didn’t work though. In fact, I had a inflammatory reaction to the shots and can no longer take steroids. I started seeing an Orthopedic Foot Doctor who put me in a boot for 6 months. During that time my back and hip started hurting. When the boot went away, the pain in my back and hip just got worse. When it persisted. I went to the orthopedic for my back and they said I had arthritis in my back and hips.This was Oct 2016. In about August of that fall I had begun having body aches and nerve pain in my legs. This progressed to numbness and weakness.
The Doctors did nerve tests and MRI’s and finally said there was nothing wrong and sent me to PT. Well it so happens that I had the best PT in the world. She told me that it really sounded like I had something Autoimmune going on with my body. She knew my GP and told me to go talk to him. I did and he said he thought I had Fibromyalgia and maybe MS or RA. He did a thousand blood tests and when everything came back negative he sent me to a Rheumatologist and recommended that my Neurologist do a brain MRI. The Rheumatologist diagnosed early degenerative arthritis in my lower back and hips and fibromyalgia. She ran a bunch of tests that were negative and said we would keep our eyes on and keep checking for muscle conditions based on symptoms. My Neurologist did a brain MRI and there was no sign of MS but we recheck every 6 months.
I have struggled with depression and anxiety since middle school. I have seen a therapist and been on medication for about 20 years now. I like to think I have it pretty much “under control” but anyone with depression knows that is a myth. My therapist and I have a close working relationship and do phone visits weekly, and anytime I feel overwhelmed or that the pain is too much to handle I text her and we schedule extra visits as needed.
The hardest part of living with my illness/disabilities is…
This is a tough one. I would have to say it is a toss up between seeing how it has affected my kids to the loss of the future I had all planned dreamed of for so long.
A typical day for me involves…
I generally wake up early, between 5 and 7. My son gets himself up for school so on the off chance I am able to sleep in, I can do so. When I first wake I lay in the bed and do a few stretches so that when I move to get up it won’t hurt so bad. Then I take my cpap off and put the hoses in the drawer and get up. I stand there and do a few more stretches. I make my bed up and set up a bunch of pillows to recline against and turn on my heating pads to warm up. I let the dogs out. Then I use the restroom and put my medicine bin on the bed so I won’t forget it. I make breakfast, coffee, and a big cup of Diet Dr. Pepper (my lifeblood). When everything is ready I go back to the bedroom and let the dogs in. I filled their bowls while I was in the kitchen.
I make myself comfy on the bed, turn on the morning show and eat my breakfast. Then I take my meds and supplements and do my journaling for the day. I might spend a few hours journaling if I don’t have anywhere to go. If I am going somewhere then as soon as the stiffness leaves my body I will get in the shower so I can sit on the bed for a while after to recover before the appointment. I always schedule appointments with this in mind. After the appointment or a few hours of journaling, around noon or one I will eat lunch if hungry and take a nap. This could be anywhere from one to four hours. When the kiddo gets home from soccer, thankfully transported by friends, we reheat leftovers, eat frozen dinners or he cooks usually. Then he usually does homework and talks to friends and showers til bed. I text with friends and sometimes journal or watch tv or something.
The one thing I cannot live without is…
My phone, it is my connection to the world outside my bedroom. My heating pads for pain control. I can’t decide between them.
Being ill/disabled has taught me…
Well, I think that my illness is trying to teach me patience and the ability to sit and relax, but I have not quite learned the lessons yet. I hate being in the bed all day doing nothing. I get impatient in SO many ways. I am a work in progress.
What advice would I give someone recently diagnosed…
RESEARCH and FIGHT. Research your disease and not just in the medical journals. Go to the blogs and the internet and read what people who have your condition have. Talk to people. You would be shocked once you start telling people how many people you know will have the same condition. Once you are armed with information then you fight. You fight with the doctors and the insurance companies and make sure you get the diagnoses, treatments, and medicines you need to get better.
My support system is…
My mother, my two kids, my friend Lori, and my ex-husband all provide supports in different ways. My best friend Traci has been there more times than I can count. My biggest support is my therapist who has went above and beyond making herself available by phone 24/7 to help when I am in pain or depressed or having major anxiety or whatever I need.
If I had one day symptom/disability-free I would…
Be on the go from sun up to sun down. I would do something fun with my boys. I would go kayaking with my best friend. Go out to eat anywhere I want. Go see a movie. Just go, go, go. Like before I got sick.
One positive of having a chronic illness/disability is…
Hmmm…. This question is a tough one for me. I honestly cannot come up with a positive at this point. Maybe I will one day but right now in this journey I cannot.
I have Bipolar Disorder and have talked about it before on my blog. It’s not something I hide but I don’t really discuss it much either so I thought I’d share a bit more about what it looks like for me.
Although currently stable on medication, when I was unmedicated and undiagnosed, I would have the most incredible highs and lows. My manic highs would see me racing around the house, cleaning whatever I could, and cooking dinners every night and baking and crafting and never, ever sleeping…I would be up for days on end without any sleep at all. At my worst, I was awake for 8 days in a row – and I mean without a drop of sleep. I was unbeatable…I would shop online without realizing what I was doing, and then all of a sudden, these packages would start arriving and I would have no clue what was in them – usually jewellery (cheap stuff) or clothing from Zulily (an online store I love).
On the other hand, when the inevitable crash came, I would crash hard. All I wanted to do was curl in the fetal position in bed and sleep…so that’s all I did. I didn’t bathe, I didn’t eat, chores went by the wayside, forget about cooking and crafting. I did the bare minimum to keep my cat alive and my husband had to fend for himself after a 12 hour day at work when it came to eating, plus do the dishes. I rarely left the bedroom, unless it was to spend mindless hours on the computer doing nothing.
Once we realized how serious the problem was, my husband and I realized it was critical that I needed to be on medication. I saw my doctor and was started on Seroquel. After that drug stopped working, I’ve been taking Abilify, which has been excellent for me in terms of managing my symptoms. Unfortunately, the side effects have been harsh and I’ve been paying the price. I am not a vain woman, but I’ve put on 20lbs since using the medication (in 6 months) and it’s 20lbs I can’t afford to carry on my 5’2″ frame. I have no ability to exercise and lose the weight, especially now that I’m wearing an Air Cast on my left ankle to try to help reattach a tendon that has torn away from the bone. Plus I take other medications that all have their own side effects…so I have to be careful with those as well.
I’ve also experienced some other unpleasant side effects including severe brain zaps, and I’ve been seeing shadows on the sides of my vision. These were enough to send me back to my Psychiatrist to discuss making another medication change – the dance that you tango when you have a mental illness. He’s decided to try me on one of the older drugs that is less likely to cause weight gain like so many of the newer ones do. It’s called Zeldox (my family doctor says it sounds like a cartoon character and I agree!) and the side effects listed are as follows:
In general, most of these are mild and go away in the first couple of weeks of taking the medication, so I’m not too concerned. I’m just hoping that the brain zaps disappear as this is one of the most unpleasant of all the side effects that I experience. What is a brain zap you ask?
Brain zap or brain shiver is a term used to describe the sensation of a sudden jolt or buzz in the brain. It is also compared to the electrical shock, has no apparent cause and is brief in duration. In most cases, it’s relatively mild but people have reported the occurrences of very extreme and painful jolts. They are a temporary occurrence. Brain zaps can sometimes be accompanied by dizziness, tinnitus, mild pain and ache and a general sense of discomfort.
I experience mine as a buzz that goes across my head from ear to ear. I can hear the loud buzzing sound as well as feel it, but there isn’t any pain. It’s almost like the hum of an electric razor, but very quick and sudden. Sometimes it’s just one zap, sometimes it’s a series of them. They’re mostly just annoying more than anything but a side effect I can do without due to their frequency. The shadowing I’ve been getting in my vision is more worrisome as I tend to freak out about anything to do with my eyes. I have no eye problems (other than wearing glasses) and I’d like to keep at least one body part in good shape for as long as possible if you know what I mean!!
I start the new medication on Monday, Dec. 17th but am writing this post to be read in February so I’ll add an update underneath so you know how it’s going.
Bipolar Disorder can be tricky to manage but with the right care, the proper medications and taking them at the right times, it can lead to a normal life. I’ve found the perfect balance between mania and depression. Now I’m able to function most days with the cooking and cleaning when my other health issues allow it and my poor husband can come home to dinner waiting most of the time. I feel more likely to work on a craft than when I was in a depressive crash, and while my sleep still isn’t the greatest, I’m not staying awake for days on end either.
Sometimes called Manic Depression, Bipolar Disorder causes extreme shifts in mood. People who have it may spend weeks feeling like they’re on top of the world before plunging into a deep depression. The length of each high and low varies greatly from person to person. If you are experiencing these symptoms, please see your doctor. There is help available and beyond that…
I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:
So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.
Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.
I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.
My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.
So, what else is on that list. Ah yes, the ever lovely Gastroparesis
Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die to having to feel better in order to die.
On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.
The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!
The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.
The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.
Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired
Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!
So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.
I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.
One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.
I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.
Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.
So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…