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Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.
We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.
I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.
Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)
I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.
I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.
My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.
A couple of suggested books and authors I adore:
Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.
Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!
Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.
I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.
Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.
Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.
One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.
This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.
Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.
I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.
Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!
There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.
Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!
I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.
Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.
What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,
My next guest is the amazing Sam Moss from Australia. She has a fascinating story so I hope you enjoy reading about her!
Introduce yourself and tell us a bit about you…
Hi, I’m Sam and I live with my beautiful husband in Australia. I have been living with a series of complex medical conditions for over 9 years now. In 2014 my health deteriorated to the point of needing to medically retire.
I had lived life in the fast lane for 30 years with a successful management career in financial services. Prior to medically retiring I was an Executive Manager in the Financial Services Industry. A career I loved as it predominately involved coaching and developing a Leadership team.
I also enjoyed various change management consultancy roles for not for profit organisations. I loved every minute of those able bodied years and am very grateful for the experiences I have had.
My career highlights include;
Contributing to creating an award winning customer experience culture in the various Banking and Insurance departments I’ve managed.
Leading an inspired and motivated team of people, many of whom are now lifelong friends.
Receiving the inaugural Banking Leader of the Year Award just before I medically retired (such a special parting gift)
Restoring an historic church building to its former glory,
Appointed as a management consultant in the Anglican Church, and assisted Senior Church Leaders (Clergy and Lay) to bring about exciting reformative change.
Now I’m medically retired I’m exploring my long term passion to be a writer. I’m a member of the Chronic Illness Bloggers Network and an ongoing contributor to “The Mighty”.
With time on my hands I decided to start a blog called ” My Medical Musings” as a way to reach out to others dealing with life changing health episodes. I also founded a Global online support forum, “Medical Musings with Friends”. It’s a place for those living with chronic illness or their carers, wanting the hand of friendship, as they journey an often lonely and difficult path.
It is a place to laugh, cry, share and vent together. It’s my absolute passion and honour to walk daily with others who understand exactly what it is like living with chronic illness.
When health gets complex, it’s really important to find others who are also battling multiple issues to share the never-ending complexities that arise and share all aspects of life living with chronic disease.
One fascinating fact about me is:
Not sure there’s much fascinating about me at all. My husband and I have moved 17 times in 24 years of marriage!! Some of those moves have been interstate and we have seen a lot of Australia as a result. That part has been a blessing.
Yes we are expert movers and this last move is definitely it. The combination of my husband’s work as an Anglican minister and my work in the Bank, was the reason for the majority of the moves. We have just settled into a lovely Lifestyle village which works perfectly for my disabilities, so hopefully no need to move again…EVER!!!
Chronic illness(es)/disabilities I have…
The list is way longer and complex than I would like, but here goes:
Rheumatoid Arthritis ( diagnosed 2010)
Sjogrens Syndrome ( diagnosed 2011)
Prolapsed Rectum ( diagnosed 2011)
Permanent Colostomy ( 2013)
Progressive Rare Bone Disease which causes my long bones to pathologically fracture. This includes both my femurs, 7 foot fractures, spinal fractures and severe Lumbar Spinal Stenosis with compressed spinal cord. Fractures won’t heal and surgery to fix my spine constantly fails as the bone disease continues to attack it.
My symptoms/condition began…
In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.
In April of that year I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break.
On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.
As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.
My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.
As time went on…
With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.
From that day my life was never to be the same again.
In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.
In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues.
I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).
I have lost count of the number of times I have been hospitalised over the past 8 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.
I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.
In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!
It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.
12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014.
I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 5 years later and has been diagnosed as a non-union break. I have been on two crutches or a walker since the femur broke and also have a mobility scooter. The disease is now attacking my spine and causing excess bone to grow into the spinal cord. Despite surgeries to try and remove the bone, it grows back so quickly the surgeries are deemed as “failed”.
My diagnosis process was…
Complicated to say the least. As above it was a long process but also quick in the sense that I was referred to the right Specialists and soon had a team working on my case to try and work out what was going on. Some diagnoses were by chance. 6 months prior to my femur snapping in two, my Clinical Immunologist had sent me for a Bone Density Scan.
His concern was low bone density (Osteoporosis) because I had been on Prednisone for 4 years. He was so surprised to find I had extremely high bone density, really high. That just shouldn’t have been the case. He quickly referred me to an Endocrinologist who began monitoring my bone blood markers. All was not good. High Bone Density and low bone turnover meant new bone was being laid down but the old bone wasn’t being replaced. Bone was being added to bone and my skeleton was getting thicker and thicker.
I remember my Endocrinologist saying, “hopefully it will just settle and you won’t get any broken bones”.
I was suffering with terrible bone pain and within 6 months of her comment she was by my hospital bed in a state of shock as my left femur had snapped in two so spectacularly. I was so blessed to be alive as I was told it could have severed my femoral artery. I was also the pinup girl in the hospital…well, my x-ray was!!
The hardest part of living with my illness/disabilities is…
For me it’s the constant daily pain and exhaustion that accompanies it.
A typical day for me involves…
Wake up around 6.30am, from a generally broken night’s sleep;
Take pills before I try to get out of bed. Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my legs and I simply can’t move until anti-inflammatory meds help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
Eventually I make it to the kitchen and put the kettle on. Depending on how I am feeling and if I need to stand rather than sit, I’ll make a simple breakfast of cereal with banana and a cup of tea. If I can’t do it my husband does. We sit and eat breakfast in the lounge room and watch the morning news and chat together. I also check in on my online support forum, emails and messages;
I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain.
The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Even lying down only brings temporary relief and I soon have to get up and try and move;
I’m determined but after breakfast I have no energy to get dressed just yet. I leave showering until the evening after dinner. So much easier to shower then knowing I can collapse into bed straight away.
In the morning I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. Ha! Not happening! I used to move at such a fast pace. I miss that. I will do all those things but it will take me 3 or 4 hours at a ridiculously slow pace.
I get told others should do those tasks for me but it is so important for my well-being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour, if not longer. I’m not a day time sleeper so I just relax as best I can, read, watch TV, blog, write articles and manage my online forum.
In the late afternoon my husband and I will have afternoon tea on our back patio. The fresh air and sitting in our little courtyard/garden brings me so much joy and is so relaxing. We’ve set it up like our own private cafe and I arrange our afternoon tea as if it were served at a boutique coffee shop or tea house. The simple things bring such joy.
I sit in the lounge room for dinner while we watch the news. I take my evening pills, shower and am back in bed by 8pm. My husband joins me by 9pm and we watch TV together. We love our evenings.
I rarely leave the house aside from medical appointments but I still have goals to get out a little more and we’ve started to achieve those once a fortnight.
All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.
(I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).
I do actually love my stoma, which I’ve had for 6 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.
The one thing I cannot live without is…
Being ill/disabled has taught me…
Life isn’t over with a chronic illness diagnosis and disability. It’s just different. New opportunities to connect with others and pursue new passions and goals, is achievable. It’s all about our mindsets. It’s about choosing to embrace new ways of living. I’ve learned to focus on enjoying moments, rather than planning ahead for good days/weeks or months.
In many ways so much of my life has changed, but nothing has changed where my faith and trust in God is concerned. I am resolved to make the best of each and every day I am blessed with.
I love each day, as I know despite my unrelenting pain, I will have moments within the day that bring joy, laughter and connection with others in some small way. Just writing this has been something I’ve enjoyed. I will definitely be collapsing on the bed straight afterwards but it’s been a delight and an honour to collaborate with Pamela on her blog.
My support system is…
My Husband is my full time carer and my main support.
My Online Support Forum Members provide me with so much love and encouragement on a daily basis
Close Friends who stay in touch with a text, email or a visit (for those who live close enough)
Our family all live interstate or a few hours away so we don’t get to see each other in person much but they are amazing in their care and concern, and also regularly text, email and phone my husband and I.
I have Government Funded support for Physio, Podiatry, Occupational Therapy, Carers, transport, home modifications, plus permanent approval for Residential Care if my health progresses to the stage of need 24 hour around the clock care.
Our Church, although having just moved to a new suburb, we are still in the process of forming new connections.
If I had one day symptom/disability-free I would…
Go for a long drive with my husband in the country. Visit little towns, stop at gorgeous cafes and walk for miles around country shops.
One positive of having a chronic illness/disability is…
I think having true empathy for others suffering with chronic illness/ disability has been a growing experience for me. We think we understand what it’s like but when you’re relatively healthy, life is busy and we don’t take enough time to look outside of our own world, to truly understand another’s needs and struggles.
Ultimately the one positive….. the gift of time
One final thing I want people to know is:
That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge, despite our chronic illness
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,
There has been much talk about the use of Cannabis for treating Fibromyalgia and other Invisible Illnesses. I recently featured John Martinez from Axon who wrote about using CBD Oil for treating migraine headaches. Today I want to share various ways you can use CBD Oils to obtain optimum health.
While there are many cannabinoids in the plant, THC and CBD are the ones “in charge” for fighting pain and inflammation. What about Hemp? Hemp has some very mild “anti-pain” properties, its use is best suited in other applications. This article by Cannadish gives an excellent breakdown of all three components.
So how do you use Cannabis to help with a medical condition like Fibromyalgia or MS or arthritis?
As an example, a Cannabis-infused Topical lotion can be applied to the skin on the areas affected by your health condition, but having a bath is a great solution to have your whole body relax with cannabis oil. It’s especially great before going to bed. One easy way to do this is by making cannabis-infused bath bombs.
100mg CBD from the dealer of your choice*
1 tablespoon olive oil or coconut oil.
1 cup baking soda
1/2 cup Citric Acid (can be purchased at any soap making store)
1/2 cup Epsom Salt
1/2 cup corn starch
1 teaspoon water Food colouring of your choice
Your choice of essentials oils 30-40 drops
Place the dry ingredients in a large bowl and mix together with a whisk.
In a small bowl, mix the liquid ingredients together, including the CBD oil until well blended.
In the large bowl, very slowly add the liquid mixture to the dry ingredients a little bit at a time. The mixture should hold together when squeezed without crumbling.
When well mixed, pack the mixture into your bath bomb mould and pack tightly, then let it dry. Make sure you work quickly so the mixture doesn’t dry out in the process.
Bath Bombs need a full day to fully harden. If they’re not quite hardened enough, they may crumble when you handle them, so check to make sure before taking them completely out of the mould
Makes one good size bath bomb, or several smaller if you are using smaller moulds
*Note: Depending on the strength of the CBD oil you have, the volume (drops or ml) of oil needed for this recipe will vary. For instance, an oil containing 1mg CBD per drop will require 100 drops. Having trouble calculating? Try this CBD oil calculator.
To use your new bath bomb, simply add to a tub of warm, almost hot water and relax for 20 minutes (min).
Other Forms Of Use
Cannabis can be used in other forms as well. Some companies have been selling a Patch. Like the patch used for the diabetic nerve pain treatment, it provides the patient with a controlled release of the medication:
Through a porous membrane covering a reservoir of medication.
Body heat melting thin layers of medication embedded in the adhesive which will contain high potency cannabinoid (CBD) extract. This extract slowly enters the bloodstream and then penetrates the central nervous system of the patient thus delivering the pain relief sought.
This excellent article talks about Cannabis Edibles and the many ways you can enjoy the benefits of this particular form of consumption. Instructions are given as to dosage, benefits, side effects and more, and it also contains a bit of history as to how edibles came to be so popular.
The author and I share very similar views that all these forms of ingesting Cannabis are beneficial to those who suffer from Fibromyalgia, MS, Lupus, Arthritis, and more.
I recommend finding a store near you where you can begin a relationship with the staff to get all your questions answered. Many US States are now allowed to sell legally and Cannabis is legal in Canada as well.
Get to know the staff, let them show you their favourite products and ways to use Cannabis, and before you know it, you’ll hopefully be finding the relief you’ve been seeking. No, Cannabis doesn’t work for everyone (in fact, I’ve tried it myself and am one of the people that it does nothing for!). Don’t get discouraged right away…try other forms such as the bath bomb if an edible didn’t work for you, or vice versa.
Cannabis is NOT a miracle cure, but when it works, it can really bring relief to an overwhelmed body. I hope you find this to be true in your case. Remember…
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In 2016, an estimated 20.4% of U.S. adults had Chronic Pain and in Canada, the numbers say approximately 1 in every 4 people lives with Persistant Pain. Chronic/Persistant Pain is described as pain that extends beyond 3 months of the estimated recovery time of an injury.
The author dealing with an Atypical Trigeminal Neuralgia flare up
Chronic Pain can be caused by the following:
Past injuries or surgeries
Migraines and other headaches
Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.
Chronic pain can range from mild to severe. It can continue day after day or come and go. The pain can feel like:
A dull ache
Sometimes pain is just one of many symptoms, which can also include:
Feeling exhausted despite rest
Loss of appetite
Sleep disturbances (I’m writing this at 2:30am)
Depletion of energy
Chronic Pain and Your Mental Health
Chronic pain can interfere with your daily life, keeping you from doing things you want and need to do. It can wear on your self-esteem and make you feel angry, depressed, anxious, and frustrated. A persistant feeling of sadness may accompany Chronic Pain. Often, people with Chronic Pain have to give up work, hobbies and activities they enjoy, which leads to further depression, etc.
With such a high prevalence of Chronic Pain in North America, how does one fight back? How do you manage living with Chronic Pain and still maintain quality of life? There are a number of ways to manage, such as:
Pain Management Courses
These courses can be a combination of Cognitive Behaviour Theraphy, Meditation and Mindfulness, Injections to help with certain types of pain, and group talk where you have the support of others in a healthy moderated environment. There are also online pain management courses for those unable to get to programs in other locations. These include:
It is my sincere hope that some of these suggestions may be just what you need to help you manage your Chronic Pain. Don’t forget to check for Pain Management Services at your local hospital as well. They often run classes of 4-8 weeks that can help you learn how to support yourself.
Medication And More
Medications play a huge role in managing your Chronic Pain. Opioids are in the news now as doctors across North America are being forced to scale back the number of prescriptions they write, but there is still a useful place for them and it’s worth discussing with your doctor to see if you can benefit.
Other medications that help include drugs like Cymbalta, Lyrica and Savella for Fibromyalgia pain, Gabapentin for nerve pain, Amitriptyline for anxiety and pain, and supplements like B12, Glucosimine, Magnesium, SAMe and Vitamin D
I hope that some of these suggestions will help you manage your Chronic Pain and give you some relief. If you have any suggestions for products that work well for you that I should consider in a future post, please feel free to leave a comment using this form
One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?
For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.
Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.
So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.
Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:
And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.
Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.
Remember…you are perfect just the way you are…everything else you do is a bonus.
Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
There is always hope!
I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.
It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.
One of the so-called “tests” used to determine if you have Fibro or not is the 18 Tender Points as shown here:
So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.
Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?
My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!
And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).
And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)
So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!