Cannabis for Fibromyalgia and Invisible Illness (And Ways To Use It)

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.

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The Process

 

INGREDIENTS

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

INSTRUCTIONS

  1. Place the dry ingredients in a large bowl and mix together with a whisk.
  2. In a small bowl, mix the liquid ingredients together, including the CBD oil until well blended.
  3. 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.
  4. 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.
  5. 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
  6. 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

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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

The Patch

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.

Edibles

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…

There is always hope

Using CBD Oil In The Bath

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Chronic Pain And How To Manage It (With Real Solutions)

Note: This post contains Affiliate Links which provides an income to me at no cost to you.

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.

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The author dealing with an Atypical Trigeminal Neuralgia flare up

Causes

Chronic Pain can be caused by the following:

  • Past injuries or surgeries
  • Back problems
  • Migraines and other headaches
  • Arthritis
  • Nerve damage
  • Infections
  • Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
  • Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.

Symptoms

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
  • Throbbing
  • Burning
  • Shooting
  • Squeezing
  • Stinging
  • Soreness
  • Stiffness

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)
  • Mood changes
  • Physical Weakness
  • 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.

Fighting Back

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:

Pain Foundations BC

Online Therapy Pain Course

Pathway Through Pain

Mind Body Pain Clinics

On Amazon.com, you can also purchase the following – click each title to link directly to Amazon:

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Pain Management Tools

There are a number of tools available that may help you with your Chronic Pain, and are worth trying.

TENs Unit

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Mindfulness For Pain

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Mindfulness Solution

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Infrared Solutions

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Hypnotic Techniques for Pain Management

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Cognitive Behaviour Therapy Workbook

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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

This article from Medical News today lists a number of essential oils that can help with pain, and discusses other complementary tools such as acupuncture and yoga.

Yoga For Pain Relief

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Yoga Essentials

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Essential Oils

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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

Remember…

There Is Always Hope

 

 

How Myofascial Therapies Helped Relieve My Fibromyalgia Symptoms

Today’s post is from my dear friend Michelle at the Zebra Pit. She’s sharing information about Myofascial Therapies and how they relieve the symptoms of Fibromyalgia. Read on!

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Fibromyalgia is a complex condition that often comes with a plethora of symptoms that can be confusing. Fibromites live with constant pain and for many even a gentle, caring pat on the hand can become unbearably painful.  Fibromyalgia is a common comorbid condition to many chronic illnesses, yet doctors often have no idea how to treat our many symptoms. Could it be the biggest culprit in our widespread pain and the formation of our tender points is a little known bit of connective tissue known as fascia.

Fascia and Myofascial Dysfunction

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Fascia is a network of thin connective tissue that runs throughout our bodies in bands and sheets. It is the tissue that helps keep everything in place and is comprised mostly of collagen. It wraps our organs, muscle and bone, creating dividing lines, holding the perfect position for our organs, while keeping our muscles and joints in proper alignment. Because fascia holds the body together and keeps everything in place, it is responsible for the body’s shape and form.

Just like tendons and ligaments, this connective soft tissue can become dysfunctional. Unlike these other soft tissues, the fascia is connected with the autonomic nervous system and some believe it to be a second, separate nervous and endocrine system, based on study findings. When myofascial tissues become dysfunctional, there are a number of things that can go wrong with the fascia, creating a scar tissue that is generally referred to as myofascial adhesions. This may be caused by mechanical or chemical failure or injury to the body.

The worse this dysfunction becomes, the greater the pain and number of myofascial adhesions. If you have myofascial adhesions, you can sometimes feel them as lumps when you run your hand firmly over your skin. Often, they are sore and painful even when using a light touch. These adhesions can also cause small fatty tumors to form. These fat deposits, along with the way fascia pull on the skin can dimple the skin, causing cellulite.

Myofascial dysfunction can be localized or widespread. If you develop tennis elbow (tendonitis), you might just develop myofascial adhesions around the injury. This is why you sometimes still experience pain even after an injury has healed. It could also grow and become widespread, as this interconnected network of tensile fibers tends to interact heavily. When fascia bunches up around one joint in order to protect it, it sometimes pulls other areas of our fascia out of alignment.

My myofascial problems ran from head to toe, causing awful tension headaches that also helped to feed my migraines, small fiber neuropathy throughout my hands and feet, 14 tender points with widespread pain and my fascia had become so tight that it was actually pulling some of my joints out of position. Neither my right hip nor shoulder would stay in place any longer.  Not only that, my myofascial tissue had grown so dense about my skull that it actually inhibited my natural hair growth and I feared I was going bald. I also had the “family curse” of cellulite and varicose veins on my arms and legs. I had regular TMJD pain and my hands were so tender, I couldn’t even knock on a door without bringing tears to my eyes. I also had tremors, it took twice the amount of time for me to go numb at the dentists, and I was constantly freezing, because my fascia were cutting off some of the blood flow and circulation to my skin.

How Myofascial Massage Helps

Fascia Head
In the 3 years I’ve been doing myofascial massage, I haven’t needed a pain medication stronger than toradol to treat my fibromyalgia pain. My head pain is at an all-time low despite suspected CCI and chiari. While my small fiber neuropathy isn’t completely gone at this point, it’s at an all time low and rarely causes issues. All of my joints function more normally and I spend a lot less time dealing with dislocations and subluxations. My hair and eyebrows are now thick and healthy. I rarely have problems with tremors anymore and even my POTS symptoms improved. I’m no longer quite so intolerant of heat or changes to the atmosphere. I have an abundance of hair and my eyebrows have grown in much thicker, too.

The traditional medicine model of pills and surgery offer poor solutions for these symptoms, but there are a number of myofascial treatments available that could improve your symptoms significantly. These therapies can be done in the comfort and privacy of your own home and there are several kinds of myofascial therapy you can have done professionally.

Each of these therapies work a little bit differently, but the long-term results are still largely the same. Each of these tools seeks to destroy any overgrown fascia and help to restore the myofascial lines to a healthy state. It is not always easy work. Some of the tools require a bit more oomph than others and the toxin release can be significant, as can the bruising. It’s worth it. The relief is greater than any of the drawbacks.

Today’s Options for Myofascial Therapy

fasciablaster

Ashley Black Guru has a number of myofascial tools which are very effective. Her videos and book are a great way to learn about how fascia functions, along with some great techniques. While it’s one of the most strenuous forms of myofascial massage, it’s still one I recommend highly. Since you have to put a little grit into it, it will help to build up stamina, strength and new muscle. This is essential to maintaining healthy joints and fascia as your body heals. Black’s methods and tools are highly effective and you can’t go wrong with her tools, though I recommend you go slow and be as gentle as possible. These tools are self-driven so you can control how hard and fast to go, how often to blast and find the best routine to suit your needs. If you need help choosing which tools are right for your specific issues, take a look at my FasciaBlaster Buying Guide.

Ultra Cavitat

An ultra cavitation machine is a handheld personal use version of ultrasound, which is used to help break up myofascial adhesions and release toxins, along with far infrared light to facilitate in healing. It’s deceptively simple to use, but very powerful. After only 4 sessions, my cellulite has decreased so dramatically, I don’t even recognize my own legs anymore. It’s amazing how something that seems so gentle can mold such terrain so dramatically. It’s also an easier, more leisurely tool to use. The pace of this tool is slow and provides a gentle touch, so there’s no pain involved.

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Cupping is another form of myofascial therapy you can opt for. In this therapy, bell like cups are applied to the skin and heat is used to create a vacuum within the cup. The suction helps to pull and release the overgrown fascia. I’ve heard good things about it from others with fibromyalgia and EDS. Cupping can be a passive form of self guided myofascial therapy, but you can also get this treatment done professionally.

Along with cupping, ASTYM is provided as a professional medical service. According to the website, ASTYM regenerates healing by eliminating scar tissue and helps to regenerate new, healthy tissue. The claim about this therapy is that it is very restorative and powerful, but they don’t share how they actually accomplish the therapy itself.

Ultra Cavitation can also be done professionally and may be more effective than self-use tools available on the market. The ultra cavitation is marketed as a tool for beauty, as it works well to create slimming, contouring and weightloss. In fact, all of these tools are marketed for their cosmetic benefits and I’ve certainly reaped my fair share of aesthetic benefits from using these tools. It isn’t my main concern, but it can be a good motivator. I’ve lost over 50 pounds while fasciablasting; a feat that seemed impossible for me due to lipedema. I’ve also really enjoyed the tightening effects on the only thing that reveals my age; my turkey neck.

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It’s also possible to have a massage therapist do your myofascial treatments utilizing your own FasciaBlaster. The number of MT’s using the fasciablaster is small but growing. Many who don’t know also seem quite willing to learn about it and you can really benefit from their knowedge and experience. The best blasting session I ever had was from a licensed MT.

Performing Myofascial Therapy Safely

With all the services and self-use tools available, it seems like there’s a myofascial therapy that’s right for almost everyone: However, it’s important to note that myofascial therapy isn’t for everyone. If you have a blood clotting disorder, take blood thinners or have a vascular disorder such as vEDS, you should not undergo myofascial therapy. Like all therapies, whether doing a self-use tool or seeing a professional, be sure to consult with your medical team to ensure it’s safe for you first. 

Safety should always be paramount when choosing a therapy for your health. Time to carefully research how to perform these treatments should be taken prior to beginning myofascial work. The risk of injury is greater if you don’t know what to watch out for and it’s easy to abuse such a tool, causing severe bruising, fatigue, toxic overload, injury or other problems. These tools need to be used only as recommended, for no longer than the specified time stated for each tool.

People with fibromyalgia and other health problems need to take these therapies very slowly. It is not unlikely that myofascial therapy will be a bit of a shock to the system, so it’s essential to ease your way in. It is possible to make yourself very sick from detox and overdoing it, causing fatigue and even a flare up in your conditions. To avoid this, start slowly and use these tools more gently than recommended. For pacing, I recommend people begin with one body part (a leg) or section (the abdominals) a day and work their way up to more based on tolerance. Take days off in between if your body is struggling with payback. To get more tips on safety and proper usage, take a look at 23 Tips for FasciaBlasting with EDS and Fibromyalgia.

Myofascial therapy may not be for everyone, but for those of us suffering with the daily pain and other debilitating symptoms of fibromyalgia, it can offer significant relief from our daily symptoms. It can even eliminate some of those terrible tender points which develop and are a criterion for diagnosis. As of today, I am down to only five; so few I no longer qualify for the diagnosis. Myofascial therapy may not address your every symptom, but since I’ve begun utilizing it, my life has been a lot more comfortable and I now enjoy many more symptom-free days.

Resources and Further Reading:

BIO:

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Michelle Curtis is a poet and writer with hEDS, POTS and MCAS. She is managing editor for the Zebra Pit where she writes about spoonie health and wellness, as well as art and culture. She has a BA in women, gender and sexuality studies from BGSU and an MFA in creative writing from NU. She lives in greater Cincinnati with her husband David and two Russian Blue cats. She thoroughly enjoys spending time with her family and friends. In her spare time she enjoys books, movies, art, music and the great outdoors (even when her MCAS doesn’t). 

10 Celebrities Who Live With Fibromyalgia

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

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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

Morgan Freeman Best Movies and TV Shows

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”.

Lena Dunham

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


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.

Mary McDonough

“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.

Kyle Richards

“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.

Janeane Garofalo

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 said about 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.

A.J. Langer

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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

Kirsty Young

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…

There Is Always Hope!

10 Things I’ve Learned About Chronic Pain

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.

The author showing various pictures of her face in pain

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.

Kitten resting in a fluffy blanket

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.

CONCLUSION

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,

There is always hope

Refresher Course

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:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Hypothyroidism

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.

Diffuse-idiopathic-skeletal-hyperostosis-DISH-of-the-spine-grave-290-male-50-60-yrs

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.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

what-is-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

DraggingMyButt

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…

There is always hope

Let's Make One Thing Clear…

Welcome!

FIBROMYALGIA IS REAL BUT YOU WILL ALWAYS FIND DOCTORS WHO DISAGREE

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia DOES exist.
fibro-symptoms-chart
Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all 18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.
Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me. But, as I always say…
there is always hope!

Furiously Happy – A Tribute

I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.

She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.

I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:
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I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.

I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.

Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.

Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).

One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”.

Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.
And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!
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Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS).  It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.
Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!

I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.

If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know.

And remember…

there is always hope