A Painful Talk (Pain and How It Feels)

I want to talk about Pain today. Physical pain is something that most people can say they’ve experienced at some point in their lives and it’s something that feels different for every person. If you live with Chronic Pain, you will experience pain in a completely different way than Acute pain, which is short-lived or fleeting.

Pain Scale

When you are in pain, you are often asked to describe how bad your pain is on a scale of 1 (being the least amount of pain) and 10 (being the worst pain you’ve ever felt). Doctors often use this chart:

pain-scale-chart

I personally prefer this updated pain chart:

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Types of Pain

  • acute pain starts suddenly and is short-term
  • chronic pain lasts for a longer period of time
  • breakthrough pain often happens in between regular, scheduled painkillers
  • bone pain happens when cancer is affecting a bone
  • soft tissue pain happens when organs, muscles or tissues are damaged or inflamed
  • nerve pain happens when a nerve is damaged
  • referred pain is when pain from one part of your body is felt in another
  • phantom pain is when there is pain in a part of the body that has been removed
  • total pain includes the emotional, social and spiritual factors that affect a person’s pain experience.
  • hyperalgesia – extreme and abnormally heightened sensation to pain
  • allodynia – Allodynia refers to central pain sensitization following normally non-painful, often repetitive, stimulation.
  • paresthesia – an abnormal sensation such a prickling or “pins and needles” in a part of the body caused chiefly by pressure on the peripheral nerves
  • visceral – pain that is felt in the thoracic, pelvic, or abdominal organs

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Image by Noupload from Pixabay 

Descriptions

Some of the descriptive words that are commonly used to define your pain include:

  • aching
  • tender
  • sharp
  • shooting
  • hot
  • burning
  • nagging
  • intense
  • stabbing
  • tingling
  • dull
  • throbbing

Living With Pain

The Pain of Fibromyalgia

For most people, pain is a response to an injury or illness and is generally short-lived. It tells us that there is a problem in the body so that we can get the proper treatment to correct the situation. 

For people who live with Chronic or Persistant Pain, the body continues to send out pain signals long after the original injury or illness, or in response to an ongoing condition such as arthritis. 

It’s important to talk about your pain and to work with your healthcare team to find ways to manage it. There are many treatment options available, from Cognitive Behaviour Therapy to medications such as Opioid drugs. It may help to have a trusted friend you can share with.

Some people find talk therapy a good alternative – for example, in British Columbia, Canada, there is a program from PainBC.com that pairs you up with a trained Pain Consultant in their “Coaching for Health” program. 

Emotional Pain

Emotional Pain can be just as devastating as physical pain, as there is often a harder time finding ways of reducing the anguish that is felt. This is where talk therapy and Cognitive Behavour Therapy can be especially of benefit. 

You may be feeling particularly distressed about the physical pain you are feeling. By seeking ways to share your emotions, you can ease the burden that’s been placed on you and come to terms with the physical pain that may now be a permanent part of your life. 

I belong to a Fibromyalgia Group on Facebook called Fibro Connect. This question was recently asked and I’ve been given permission to share some answers here:

Finish this sentence: The hardest thing for me when I got chronic pain was…

  • Sheila Ibe McGaughey Hicks: When I don’t have anything to cure the pain and the Dr.s don’t give a da–. If it was them you can bet they would have something!!
  • Melissa Temple: Dealing with what I couldn’t do anymore.
  • Margie Daily Williams: Relationships
  • Vicki Fellas DeKroney: Going out with my husband and doing things we used to do. Liked dancing.
  • Peggy O’Connor: Having fun like I used to – it being so loud in the stores and the fluorescent lighting got to my eyes. I couldn’t wait to get home to my chihuahua and just destress. Not fun at all 
  • Leeroy Good: I had to learn that who you talk to about certain things is important and knowing who to share with is an art.
  • Nikki Albert: Accept I was disabled
  • Marjorie Mccluskey: Sleeping
  • Lisa Kreimes: Having to give up my old self. The person that could do everything, and friends dropping like flies because they don’t understand why you can’t be who you once were. 
  • Lea Cheney: To fight the anxiety and depression
  • Linzi Bee: I miss long dog walks so much .
  • Susan Weber: Everything above. You all nailed it.
  • Pamela Jessen: Accepting that my life was going to drastically change.
  • Susan Pearson: Realising I am unlikely to have children. I still try and consider other options going forward but time is ticking away and windows are narrowing. All the rest are just frustrations in comparison to this.

Conclusion

As you can see, living with Chronic Pain causes your whole life to spiral out of control. Chronic Pain affects every aspect of your life – your relationships, your work, your hobbies, your freedom, your ability to make choices…that’s why it’s crucial to work with your healthcare team to find solutions that help you. Remember…

There Is Always Hope

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Interview October – Keiran Potter

It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!

Keiran Potter

Introduce yourself and tell us a bit about you…

Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry. 

One fascinating fact about me is:

Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact. 

Chronic illness(es)/disabilities I have…

Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former

My symptoms/condition began…

The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018 

My diagnosis process was… 

 I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart. 

When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines. 

So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis 

The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers 

The hardest part of living with my illness/disabilities is…

The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain. 

A typical day for me involves…

 A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs 

The one thing I cannot live without is…

 Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them. 

Being ill/disabled has taught me…

To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes  

My support system is…

My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me 

If I had one day symptom/disability-free I would…

 Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life

One positive of having a chronic illness/disability is…

I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people. 

One final thing I want people to know is:

 Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day 

My links are:

Https://KeiranCrying.com/blog

Instagram.com/keirancrying

Chronic Pain And Addictions

I want to talk about a difficult subject today…Chronic Pain and Addictions. When you live with Chronic Pain, you can find yourself spiraling in a dark hole. Sometimes depression becomes as big of a problem as the physical pain you live with, and in a desperate need to feel better, you find yourself turning to your medications too often, or you resort to drinking or eating as a way of filling the gap.

Addiction is easy to fall into, as often, you are not receiving adequate treatment for your pain to begin with. You find yourself taking your medictions sooner than directed, or you take more than recommended and then suddenly, you’re in withdrawal at the end of the month when your prescription has run out.

Instead of abusing your pain medications, you may turn to alcohol to increase the “buzz”, or food may become the drug of your choice. “Anything to dampen the pain” is what you might be thinking, and sometimes, it works. Other times, it feels like nothing can fill the unending gulf of pain you live with and so your depression deepens and you’re left feeling worthless. Thoughts of suicide may plague you but you resist telling others for fear they will see you as weak.

Let’s examine this problems in more detail.

Medications

Opioid abuse is an epidemic in the United States. In 2016, approximately 11.5 million Americans 12 years and older misused opioid pain medications, and 1.8 million had a substance use disorder involving prescription pain medications. From 2000 to 2015, more than 500,000 persons died from opioid overdoses, with deaths generally increasing as prescription opioid sales increased. In 2012, clinicians wrote 259 million prescriptions for opioids, enough for every U.S. adult.*

Chronic Pain and Addictions

There are a variety of medications that are used in the treatment of Chronic Pain. As you probably know, there is a current push from to cut back on Opioids like Oxycodone and Hydrocodone because of perceived over-prescribing and the number of deaths linked to the mis-use of Opioids. The number of deaths from illegal Fentynal overdoses has increased dramatically, yet the people who actually require the drug for their Chronic Pain are being turned away by their physicians or are having their dosages cut back significantly.

PreGabalin, Gabapentin, and mixed drugs like Tramacet (Tramadol and Acetaminophen) are now being used more frequently, but not always to great benefit. This is one of the reasons the use of illegal Fentynal is increasing – people aren’t getting adequate relief from their doctor-prescribed medications and so they’re looking to the streets for solutions.

Alcohol

Throughout the ages, people have used alcohol to manage their pain. A swig of whiskey after a bullet wound in the old Westerns, or to numb the pain of a teething baby are two minor examples. A study done recently showed that 28% of people with Chronic Pain used alcohol to help control their pain**

Chronic Pain and Addictions

Although alcohol has been shown to reduce pain, it’s a temporary solution and has potential and possible fatal risks. When you drink, you are more likely to abuse your prescription medications, resulting in furthering the sedative effects of both. You also increase the possibility of liver damage or gastric bleeding. Using alcohol as a pain medication often ends up with exceeding the recommended amount that you should drink and overdose of alcohol and/or prescription medications can be fatal.

Other points to note:

  • Withdrawal from chronic alcohol use often increases pain sensitivity which could motivate some people to continue drinking or even increase their drinking to reverse withdrawal-related increases in pain.
  • Prolonged, excessive alcohol exposure generates a painful small fiber peripheral neuropathy, the most common neurologic complication associated with alcoholism.

Food

When a person is unable to control the amount of pain they live with, they may turn to food instead, as a way of finding relief. It doesn’t take away the pain, but satiating yourself gives back the illusion of that control that you’ve lost elsewhere. Anorexia and bingeing/purging become huge risks and lead to further medical problems.

Chronic Pain and Addiction

Anorexia is the elimination of food from the diet, until your calorie intake is grossly under the recommended daily allowance for health. It is a psychological and potentially life-threatening eating disorder.

There are a multitude of health risks involved including mood swings, low blood pressure, heart problems, kidney and liver issues, loss of bone density and the very real possibility of death.

Bingeing and purging causes issues such as gastric problems, dental issues from vomiting and bile wearing at the teeth and gums, dehydration and depression issues. The use of excessive laxatives is hard on your bowels and runs the risk of chronic constipation, resulting in a Catch-22 of needing to use more laxatives to alleviate the constipation.

Excessive Exercise is another form of purging. By engaging in obscene amounts of exercise, you expose yourself to potential damage to your joints from overuse, dehydration, weakness and potential heart issues.

Other Addictions

Other addictions to be careful about including smoking, gambling, shopping and sex although I’m sure you can think of even more. Each of these excessive behaviours can lead to damaging consequences so it’s imporant to be aware of them. When you live with Chronic Pain, you can have an “all or nothing” mentality – you simply want to do anything that will help you focus on something other than hurting.

What Next?

The first step to any of these issues is to accept that you have a problem. Professional help is required to allow you to wean off of the drugs or alcohol, or to start a healthy relationship with food.

Support groups are available both in person and online and are highly recommended. To be with people who have gone through the same experiences as you have can be very comforting.

A Pain Management program may be suggested to help you get to the root of your problems, and to help you find solutions to managing your pain more effectively.

Talk to your family physician to start. Now is the time to be honest about what you’ve been going through and how you’ve been coping (or not coping). Accept that seeing a counsellor on a regular basis may be a requirement for your success. Having a safe place to talk goes a long way in setting goals for yourself and achieving them.

Ask about specific books that may help you understand Chronic Pain more completely. Knowledge is power.

Finally, realize that you are not a bad person. You may have made some bad choices, but recognizing them and changing them is what’s important. We all make mistakes, and even if you think you’re the worst person in the world…you’re not. You have value and worth and are deserving of the best care possible. Remember,

There Is Always Hope

*https://www.aafp.org/afp/2018/0301/p313.html
**https://pubs.niaaa.nih.gov/publications/PainFactsheet/painFact.htm

chronic pain and addictions

Changing Doctors When You’re Chronically Ill

For those with “invisible” illness, it’s difficult to find a doctor who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.

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So what happens when you find that Physician and then they move on?

I started out by seeing a Naturopathic Doctor in Victoria because I needed nutritional care. My previous doctor had supplied me with enough of my prescriptions to last for 3 months, so that wasn’t as big a concern for me. Dr. Holewa let me know that a new GP would be opening his practice in the same clinic she was located and I called to be put on the waiting list to belong…news about the new doctor had already started circulating in the community and everyone was signing up! 

I was still able to get an appointment though, for the last day before the Christmas holidays in 2013. It was basically an interview between the Doctor and me, to see if we were a fit and if he was willing to take me on as a patient, given my challenging health history. Dr. Leong and I really hit it off and he agreed to accept me into his practice (along with my husband). What a relief!

Now, I don’t know what it’s like to try and find a doctor where you live. If you are in the USA, I believe it’s fairly easy. The problem is finding the RIGHT doctor…one who meshes with you in terms of beliefs and who blends with your personality. You want strong medical knowledge, a good office staff, decent parking and hours and the feeling that you’ve found “the best” when you see him/her. I found all of that with Dr. Leong and so we began a 5-year patient/doctor relationship that took us through all my health problems, including my hip replacement, brush with skin cancer and more. And then one day, he told me he was leaving the practice and moving to a smaller town up-Island. 

 

Closing The Practice

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The word I heard most from his other patients has been “devastating,” I absolutely concurred. Dr. Leong was highly respected and well loved and the thought of being without him was almost too much to take in. His main reason for leaving was that he wanted to live in a smaller town, and at first, I thought I would simply continue to see him, as his new practice was only a 30-minute drive away. The reality though was that there were no buses that took me there and I would be forever reliant on my husband taking time off work to drive me. That just wasn’t feasible so not only was I losing a good Doctor, I was going to have to find a new one too (there were no plans to replace him in the clinic). 

What’s the big deal? Well, as I said, there is a shortage of doctors in my Province. Recommendations filled my email, but the fact was no other doctor in town was taking on new patients. It looked like most of us were going to be resigned to using Urgent Care for our medical treatment. The thought of that filled me with dismay. I needed a good working relationship with my Doctor because of my history and that simply wouldn’t happen in an Urgent Care facility. 

Then one day, about three weeks after first receiving the news, word came from the office receptionist that there was a new doctor in town who would be taking on a limited number of new patients. My clinic’s receptionist faxed the referral to the office where this new Doctor would be setting up – not that far from where I was currently going. It seemed that this Doctor had requested from several medical offices that they send their “best patients” to her…and I was one of them! Dr. Penny Wilson agreed to take me on along with my husband! What a relief!! She is here for a year from Australia but promised that if she decided to go back home at the end of the year, one of the other doctors in the new clinic would take us on. My relief was immense.

 

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Conclusion

For those of you who are going through this situation right now, you have my sympathy and my empathy. It can be frightening to be left without a safety net. Keep asking at other offices about being put on a waiting list, and check with your family and friends to see if their doctor can take you on because of your relationship and closeness.

So what DO you do when your doctor leaves and there is no doctor to take over? I wish I had an answer for that. Many doctors have replacements come in when they leave, or the clinic they are leaving hires someone new. When that’s not in the works, you can be left scrambling and in the case of being a Patient with Chronic Pain, that’s so frustrating. Frequent visits are normal because of medication changes, new symptoms to be checked and old symptoms revisited. My best advice is to check with the Doctor who is leaving and ask if there is a succession plan. What do THEY recommend you do?

Having a Doctor leave his practice is a scary prospect. I hope that you never find yourself in the same position I was in, but if you do…I hope it works out well like it did for me. Keep the faith…remember,

There is always hope 

11 Steps For A Better Night’s Sleep

If you ask someone how they slept last night, chances are you’ll get one of two answers – “fantastic” or “not at all”. It seems like a lot of people have trouble getting a good night’s sleep. The reasons can be many – having young children, an uncomfortable bed, too hot, too cold, too much stress…the list goes on.

When you live with Chronic Pain, it’s an entirely different story. Pain is usually the main factor in keeping us awake, and the likelihood of a good night’s sleep is generally not to be expected.  Read on to find out more about what it takes for a good night snooze. 

man sleepless in bed

 

Sleep And Your Immune System

Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye.  Chronic sleep loss even makes the flu vaccine less effective by reducing your body’s ability to respond.

Stock Up on Naps

To stay healthy, especially during the influenza season, get the recommended seven to eight hours of sleep a night. This will help keep your immune system in fighting shape and also protect you from other health issues including heart disease, diabetes, and obesity.  If your sleep schedule is interrupted by a busy workweek or other factors, try to make up for the lost rest with naps. Taking two naps that are no longer than 30 minutes each —one in the morning and one in the afternoon—has been shown to help decrease stress and offset the negative effects that sleep deprivation has on the immune system.  If you can’t swing a half-hour nap during the workday, try grabbing a 20-minute siesta on your lunch hour, and another right before dinner.

Other Healthy Tactics

Person washing their hands

Of course, there’s more to boosting your immunity and guarding against illness than getting ample sleep. It’s also important to practice smart stay-healthy strategies such as washing your hands with soap regularly, avoiding close contact with people who are obviously under the weather and talking with your doctor about getting an annual flu shot.  And remember: Even if you do come down with a case of seasonal sniffles, you’ll be able to bounce back faster if your body is well rested. 

11 Tips For A Better Sleep

  1. Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
  2. Set a bedtime that is early enough for you to get at least 7 hours of sleep.
  3. Don’t go to bed unless you are sleepy. If you don’t fall asleep after 20 minutes, get out of bed.
  4. Establish a relaxing bedtime routine. Use your bed only for sleep and sex.
  5. Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
  6. Limit exposure to bright light in the evenings. Turn off electronic devices at least 30 minutes before bedtime.
  7. Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
  8. Exercise regularly and maintain a healthy diet.
  9. Avoid consuming caffeine in the late afternoon or evening.
  10. Avoid consuming alcohol before bedtime.
  11. Reduce your fluid intake before bedtime.
  12. Take your medications on a regular basis. If you take sleeping meds, take them on a regular basis as directed instead of just hit and miss each night. 

Some Items to Help with Sleeping

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Yolmina 3D Contoured Eye Mask for Sleeping

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ZzzQuil Pure zzz’s Sleep Aid

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Contoured Heating Pad for Neck and Shoulders

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White Noise Machine

Conclusion

Good sleep is available to all of us, but it can take some work to achieve it. Just think of the benefits at the end though…those zzzz’s are worth it!

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

Interview April – Terri Sutula

Readers, thank you for checking out our final Interviewee – the fabulous Terri Sutula. 

TerriSutula

Introduce yourself and tell us a bit about you…

Hi, I’m Terri Sutula, and I currently live in the state of Virginia, USA. I’ve been married to the love of my life for the last 21 years, and I’m the Mom of a fabulous grown son. I served 20 years in the Air Force, and after I retired, I went back to school and received my degree in Religion (emphasis church ministry), then obtained my certifications in Personal Training and Health Coaching with the goal of developing a whole-person health ministry. Those plans took a bit of a turn in 2011…. Now I consider my blog to be my ministry, and I hope that by sharing my journey, setbacks and all, I can let people know that there is still life – a great life – after diagnosis, and help them avoid the hopelessness I felt at one point during my illness.

One fascinating fact about me is:

I don’t know if I’d call it fascinating, but it’s something my family loves to tease me about…. I’m constantly making up silly songs to popular tunes. I just can’t seem to help myself haha.

Chronic illness(es)/disabilities I have…

My main issue is fibromyalgia, though I’ve suffered from migraines my entire life, and have also lived with endometriosis, early osteoporosis (probably from the endometriosis treatment), and irritable bowel syndrome for years.

My symptoms/condition began…

Around 2011, my primary fibromyalgia symptoms began after a “snowball” of illnesses, accidents, and a stressful move. I got the flu and soon after that, was diagnosed with subacute thyroiditis, which resolved after about a year. During the same period, I had a couple of bad falls which ended with me doing a face-plant on the pavement. My second fall ended in a trip to the Emergency Room and pain in my ribs for months afterwards. Then, about a year later, we moved to another city, and everything that could go wrong did. I became extremely stressed out, my abdominal symptoms got worse and worse, and the fatigue and whole-body pain became overwhelming.

My diagnosis process was… 

Surprisingly enough, my diagnosis process was pretty quick and easy. I went to my Primary Care doctor, explained my symptoms and my accompanying illnesses, and he checked me for tender points, did some bloodwork, and confirmed what I suspected – that I had fibromyalgia.

The hardest part of living with my illness/disabilities is…

The hardest thing for me to come to terms with is my physical limitations. As I mentioned earlier, I was in the military for 20 years, stayed mentally and physically strong, and was capable of doing pretty much anything I put my mind to. Learning to work within my revised capabilities has really been a challenge, but it has also been a time of growth. It’s given me greater empathy for others and I’ve discovered a new sense of purpose.

 A typical day for me involves…

I’m not sure I have a really “typical” day – I just do whatever needs to be done on a given day. I do try to do some blog work most days, and I break my cleaning chores into different days so I’m not trying to do everything at once. We’ve started picking up groceries for a few days at a time rather than doing a “big” shopping trip once a week. It gets me out of the house and helps me work with my energy levels. It’s a lot easier to run into the store for a few things than to spend a long time shopping. I guess I’d say I do all the “normal” things others do, just on a smaller, more relaxed scale. I’ve learned that pacing my activities is key to keeping flares at bay.

 The one thing I cannot live without is…

 I have to say that there are actually two things I can’t live without, my faith and a sense of humour. Both of these are my keys to not just surviving, but thriving, with fibromyalgia and any other adverse event or circumstance that comes my way.

Being ill/disabled has taught me…

This illness has taught me that it’s okay to ask for help, and it’s okay to not be okay sometimes. I’ve learned that I don’t have to be strong all the time; it’s okay to share the load with others and asking for help isn’t a sign of weakness; it’s actually a sign of strength.

 My support system is…

My absolute biggest supporter is my husband, and I’m so grateful to have him. I’m very fortunate to have a really supportive family in general, but he’s my day-by-day, minute-by-minute supporter. He sees what I go through many days and is always willing to do whatever I need him to do.

If I had one-day symptom/disability-free I would…

I would go hiking on one of the beautiful trails we have around here. My hubby and I used to love to pack a picnic lunch and go hiking, and unfortunately, my pain and energy levels don’t allow us to do that right now. My goal is to work my way up to at least some of the easy trails.

 One positive of having a chronic illness/disability is…

You find out what’s really important to you when you have a chronic illness/disability. When you aren’t in such a place of “doing” all the time, as I was before I became ill, you can concentrate on the things that really add the most value and joy to your life.

One final thing I want people to know is:

There is hope, and there is a fulfilling life after diagnosis. Your life might not look exactly the way you imagined and you might have to learn to adjust to your “new normal” but this new phase of your life might open up even greater opportunities for you to live a life of joy and purpose.

My links are:

Blog: https://reclaiminghope.blog

Facebook: https://facebook.com/hopereclaiming

Twitter: https://twitter.com/hopereclaiming

Pinterest: https://pinterest.com/reclaiminghopeblog

Interview April – Sharon Sayler

It’s time to meet our next guest, the wonderful Sharon Sayler. I’ve had the pleasure of being a guest on Sharon’s show and she’s delightful. Let’s hear more:

Sharon Sayler Headshot 2017 Hi-Res

Introduce yourself and tell us a bit about you…

First, thank you, Pamela, for creating an excellent platform for which we have this opportunity to share. I enjoy our mutual understanding that through thoughtful sharing of experiences others in our community know that they are not alone. That feeling of ‘am I the only one?’ can be isolating. Building community and awareness of ways to thrive and optimize our health journey are critical.

I’m Sharon Sayler, MBA, PCC and the founder of Competitive Edge Communications. I’m affectionately called the ‘Difficult People Whisperer’ by my clients. As a speaker and trainer, I teach professionals how to enhance their verbal and nonverbal communication skills to achieve their goals. According to GlobalGurus.org, I’m one of the top five experts in body language in the world.

I am also an international best-selling author of several books. A perennial favorite is ‘What Your Body Says and How to Master the Message: Inspire, Influence, Build Trust and Create Lasting Business Relationships’ (Wiley.) I  am also proud to share. I’ve also authored a best-selling children’s book ‘Pinky Chenille and the Rainbow Hunters’ with a second book in the Pinky Chenille series out soon.

Several years ago, life and work took an unexpected turn to become what my friends now call a “compelling-passion.” With my COURAGE communications techniques combined with my own experience dealing with a rare medical condition, I have been teaching others to become courageous self-advocates. Self-advocacy communication techniques can turn life transitions into transformations.

One of the ways I share the messages of ‘thriving regardless of your diagnosis’ and medical self-empowerment is through The Autoimmune Hour, now #1 show on OMTimes Radio along with the @UnderstandingAutoimmune YouTube channel, and the show’s website UnderstandingAutoimmune.com.

Chronic illness(es)/disabilities I have…

I dislike the word ‘have’ as I prefer my unconscious mind not to take ownership, yet for ease of understanding, the label my experience has is autoimmune more specifically Dermatomyositis. 

Dermatomyositis is a rare inflammatory (autoimmune) disease defined by muscle weakness and a distinctive skin rash. The painful, peeling rash had covered 60% of my body by the time I recovered from the initial ‘flare.’ 

My symptoms/condition began…

Suddenly and not so suddenly.  One morning I woke up after a late night cross-country flight and my legs felt incredibly weak. I had to use my arms to move my legs to stand. Although frightened, this seemed to work itself out over the next few hours. I chalked it up as ‘weird’ and kept working. Feeling tired and achy for the next two weeks, I suddenly broke out in hives that soon covered a large percentage of my body.

I realize now I’d had a variety of symptoms long before this episode that fit a wide range of conditions, and it wasn’t until the distinctive skin rash that a definitive diagnosis was made.

My diagnosis process was…

Bizarre to say the least. I had been seeing a specialist for about a year with her proclaiming a variety of diagnoses that didn’t seem to fit….

The day I walked in with the ‘now peeling distinctive skin rash’ she immediately excused herself and came back 10-minutes later with another doctor who without introduction, pulled out a magnifying glass and looked at various parts of the rash, looked at the first doctor, nodded ‘yes,’ and left the room. The first doctor that I had known for a few years dropped her head and slowly apologized to me for having dermatomyositis.

She could have said supercalifragilisticexpialidocious as the word ‘dermatomyositis’ meant nothing to me. The sad-news-body-language told me, ‘it’s not good.’ After that, the words blended together as I struggled internally to understand what she was saying – it was like my ears had stopped hearing and my brain had ‘frozen.’

We parted ways with an understanding I had to see a rheumatologist. Upon reaching the elevator, I immediately ‘googled’ the word, at which time the shock and grief hit hard.

The hardest part of living with my illness/disabilities is…

Losing perspective. Now, that I’ve been through multiple phases of recovery, I realize the worst part is losing perspective on ‘when is an itch, just an itch.’  The slightest change, the smallest strange pain, anything odd or different begins the mental gymnastics of Do I need to worry about this? What does this mean? Is this so important that I must seek medical attention immediately, can it wait until tomorrow, or what if I just let it run-its-course will I be okay?  And of course, dealing with all the new found food and chemical sensitivities as the body defenses seem to be stuck in hyperdrive make social occasions awkward.

A typical day for me involves…

Everything I used to do that I still want to do. The changes I see are I’m more consistent in choosing to set boundaries, say ‘no’ when I want to, remove myself from others drama and be conscious of my decisions and actions around what I should be doing for overall good health such as quality food, stress reduction, sleep, and exercise.

The one thing I cannot live without is…

Spending time creating joy, especially with my beautiful family and friends. Life is too short — spend it giving and receiving love. (And the irresistible passion I have for doing The Autoimmune Hour podcast and video show.)

Being ill/disabled has taught me…

I don’t consider myself ill or disabled, yet I’ve learned to be more patient and understanding. It’s crystal clear now, the old saying ‘that one can never really know what someone else is going through unless you’ve been there too.” My mantra these days is ‘Come from love. Always.’

What advice would I give someone recently diagnosed…

First, if you can, take time to absorb and sit with the ‘bad news.’ If it’s not immediately life-threatening, don’t make any major life decisions right away.

I remember I was told by a ‘top-notch’ doctor to have a surgery that in my mind would have made my life much worse in the long run, and with no real assurance that it would solve the immediate problem… I felt like they were treating me as if they were working on a car like ‘let’s remove the spark plugs and see if that works better….” Upon finding out that it wasn’t immediately necessary, I thanked them and sought a second opinion. 

That second opinion changed my worldview; the second doctor said, “That’s a surgeon’s answer to a problem they cannot solve.” Wise words that I use everywhere now as in each person/expert/etc. has a specific point of view and the more narrow their expertise, the more narrow their recommendations will probably be.

Always run options through the filter of “What are other ways I can view and solve ‘this?’ Remember, it’s okay to ‘fire’ someone. If someone is upset that I seek a second opinion. I say “Thank you for your time and no thank you.” I like to joke that there are as many varied opinions as there are experts.

Second, be careful how you talk about what you are going through. Our words create our reality. Words such as ‘poor me’ and ‘why me? can create our identity. Consider the word ‘have’ and how it denotes ‘ownership’ Do I want to own my diagnosis? No. I prefer to look at the word ‘have’ from the viewpoint that I can ‘have’ cockroaches, but that doesn’t mean I own them and that I can and will eradicate them. When said enough times your words become truth in your mind, and in the minds others too.

I prefer ‘I am having an autoimmune experience or journey.’ A diagnosis is just a label to chart a possible course based on symptoms and the prognosis is based on statistics — work hard to be on the positive side of the stats. Challenge yours and others’ conclusions on what your future will be. On The Autoimmune Hour, we have numerous stories of people thriving regardless of their diagnosis including Pamela who recently shared her Thriver story: www.UnderstandingAutoimmune.com/Jessen/.

My support system is…

My amazing family and friends as well as a team of medical professionals that are in alignment with, or at least, honor my view of ‘my body, my decision.’  And the UnderstandingAutoimmune’s Courage Club Community that is growing every day through the podcast and website.

If I had one-day symptom/disability-free, I would…

Hmmm, I don’t know. I’m finding ways to live fully and thrive regardless of my diagnosis. Maybe eat a whole loaf of fresh baked crusty bread slathered in homemade butter and raw honey at a quaint Parisian cafe!

One positive of having a chronic illness/disability is… 

A deeper appreciation of the quality and value of all life.

My social media links are:

The show can be heard on a major podcast outlets such as OMTimes Radio, Spreaker, iTunes, YouTube and iHeart Radio.

https://www.facebook.com/UnderstandingAutoimmune/

https://www.facebook.com/AutoimmuneHour/

www.UnderstandingAutoimmune.com/OMTimes

www.UnderstandingAutoimmune.com/YouTube

www.UnderstandingAutoimmune.com/Spreaker

Instagram: autoimmunehour  and understandingautoimmune

Twitter: @autoimmunehour

What Does Science Say About CBD Oil For Migraines

Let’s welcome back John Martinez as my Guest Blogger today. John brought us information about using eyewear to help with migraines, and today, he’s talking about CBD Oil to help ease Migraine pain. Please note that all opinions expressed are those of the author but I do endorse them as well.

CBD Oil for Migraines – Effective, or Merely Hype?

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CBD oil has been gaining some steam in the media ever since its recent December 2018 legalization in the US.

Additionally, in the migraine community, there are loads of anecdotal evidence expressing the effectiveness of CBD and treating migraines. Is it all hype, or are these claims backed by scientific literature?

This article will get into the specifics of what CBD oil is, and whether it’s something migraineurs should investigate as something that could benefit them.

What Is CBD Oil?

CBD (also known as cannabidiol) oil is a naturally derived product from the plant Cannabis Sativa. Cannabis Sativa is categorized as a family of plants that contains two primary species: hemp and marijuana. The Cannabis Sativa plant also contains 120 other substances aside from cannabidiol. Most CBD oil is extracted from the hemp plant and contains no THC, which is the psychoactive chemical in marijuana. THC is the chemical that causes the feeling of being high. CBD oil is an isolated extract from the hemp side of Cannabis Sativa, not the marijuana side of the plant that contains THC.

Simply put, CBD is not marijuana and will not make you high.

Although CBD is derived from the same plant that has the ability to produce marijuana, CBD is non-addictive. A study that was conducted by the World Health Organization has proven, through a double-blind and randomized study that, on the scales of the Addiction Research Centre Inventory, there was no difference in addiction risk between CBD oil and the administered placebo.

Could CBD Oil Help Me with Migraines?

The efficacy of CBD oil to treat migraines varies from person to person. In a 2012 study, CBD was found to reduce inflammation and assist with chronic pain relief. CBD oil has minimal side effects compared to typical over the counter drugs and prescribed medications. Some side effects of CBD include appetite changes, fatigue, and diarrhea, which most of us would categorize as minor. One of the most appealing aspects of CBD oil is that it is not a pharmaceutically-engineered drug, but rather a natural avenue towards pain relief.

Unfortunately, there hasn’t been any studies specifically demonstrating the effects CBD has on people with migraines. There have been quite a few studies on marijuana as a whole and migraines, but not isolated CBD.

For example, there was a 2016 survey conducted by Pharmacotherapy which indicated that “medical marijuana” may reduce the frequency of migraine headaches – from 10.4 down to 4.6 per month. Even though marijuana contains CBD, we can’t attribute the results to CBD.

Overview of CBD Oil and Migraine Pain Relief

While it’s too soon to definitively say that CBD oil might be an effective treatment for people suffering with migraines, progress is being made.

All we know for sure is that there are some properties in CBD that help with inflammation and chronic pain management. And we also know that in medical literature, marijuana (which contains CBD) seems to be giving some people migraine relief.

Since it’s now legal on a federal level (in the US), and it’s a naturally occurring compound, it may be worth a try.

If you want to learn more about CBD, check out this article, CBD Oil for Migraines (2019) – Everything You Need to Know.

Remember, there is always hope

Invisible Illness – But You Look Fine!

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)?Screen Shot 2018-12-10 at 10.56.48 AM

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.

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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:

FibroSymptoms2

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.

There is always hope.