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1.

Pain News Network: Record decline in opioid prescriptions

From the article: “The volume of prescription opioids dispensed in the U.S. last year fell 17 percent, the largest annual decline ever recorded, according to a new study by the health analytics firm IQVIA. Opioid prescriptions have dropped 43% since their peak in 2011.”

2.

Wise Traditions: The problem with fluoride (YouTube audio only, 27 minutes)

If you drink tap water from a town, city or community, you really need to listen to this podcast from Wise Traditions.

3.

The Trail to Health: How I healed from Lyme disease

Blogger Erika Schlick shares a lengthy (and almost exhausting) list of therapies she used to heal from chronic Lyme. I always love these kinds of articles because it’s helpful to read what works for others.

4.

Blooming Mindfulness: Alternative Marie Kondo method for chronic illness

Struggling with a messy house and lots of clutter? Beverley from Blooming Mindfulness modifies the popular Marie Kondo decluttering method for those with chronic illness.

5.

Lyme Disease Supercharge Podcast: Mold sabbatical – the first step in healing from mold illness (Audio, 15 minutes)

Mold illness symptoms mimic those of fibromyalgia. Mold exposure can also slow the treatment of Lyme disease. If you’ve ever lived or worked in a moldy environment, you might want to research mold toxicity and see if it could be an underlying cause for your symptoms or a factor in why you’re not getting well. In the podcast linked above, author Bryan Rosner details a simple way to determine if mold might be contributing to your sickness. Another good mold resource is Ritchie Shoemaker’s website, Surviving Mold.

And an extra …

The Curious Frugal: 10 free guided meditations for pain relief

This week on FedUpwithFatigue.com…

The if this, then that approach to managing fibromyalgia and chronic Lyme flares

Thank God for ActiPatch!

(This section contains an affiliate link.)

Last year, ActiPatch reached out to me and asked me to try out their latest pain-relieving device in exchange for a blog review. (Read that review here.) Back then, ActiPatch did a great job reducing my lower back pain caused by a bulged disc, and I’ve been using ActiPatch almost daily ever since publishing the review.

A few days ago, my latest device unexpectedly stopped working. Oftentimes, you don’t realize how much a particular treatment is helping until you no longer have it. That was the case with ActiPatch! Oh boy, within 24 hours of my ActiPatch dying, my lower back pain increased from a typical 3-4 on the pain scale to 6-7, and sciatica snaked its way back into my hip and down my leg. I was so miserable, I was seriously thinking about contacting my doctor for a steroid pack to reduce the inflammation. I ended up popping Tramadol and gabapentin for several days with minimal relief.

Fortunately, when I contacted ActiPatch and told them about the defective unit, they mailed out a replacement immediately. Within a few hours of putting the replacement ActiPatch over my bulged disc, the pain subsided again. I am so impressed with this product! And no, they aren’t paying me to say this!

I just wanted to share my recent experience for those who suffer from localized pain (back, neck, knee, etc.) since the device is relatively inexpensive, and it works (for me at least)! If you’d like to try out ActiPatch, you can purchase a 7-day trial device through TryActiPatch.com or Amazon.

The post May 17, 2019 fibromyalgia and chronic Lyme news appeared first on Fed Up with Fatigue.

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Every week I write about tools and resources to help people live better with fibromyalgia and chronic Lyme. You’d think I’d have the perfect plan to deal with the inevitable flare of symptoms.

Well, not so much! I swear there’s something about a flare that incapacitates the few brain cells I have left. Put simply, when I’m faced with higher-than-normal pain levels, exhaustion or other intensifying symptoms, I can’t think!

Because I can’t think, I can’t remember what to do to help myself. So, all those pain-relieving gadgets and vitamin powders and heating pads sit on a shelf as I’m curled up on the sofa under a blanket, praying for hell to pass.

Can you relate? I think many of you can based on recent discussions I’ve had with some of my fellow fibro and Lyme warriors. Apparently others struggle with this brain freeze, too.

But I think I’ve figured out a solution. I’m adopting an “if this, then that” approach to symptom flares. Specifically, I’ve created a written plan for myself, detailing what to do when certain symptoms intensify.

Maybe it will inspire you to create your own “if this, then that” plan!

Note: I have multiple tools listed under each symptom category. I don’t use every single thing on the list each time. I pick and choose depending on the severity of the flare and what I think might work given the situation. This plan is more about summarizing my available treatment options rather than following a rigid step-by-step protocol.

For flares of general, diffuse body pain

We’ve all experienced those flares where our entire body aches so much that it almost vibrates. I used to reach for painkillers as my first step of attack, but over time I’ve noticed this all-over, achy feeling is often triggered by my contact with certain toxins, such as glyphosate (aka Roundup weed killer) in food or chemicals in household products. Now when I get that flu-like feeling, the first thing I reach for is a binder. More than half the time, the binder works, and I don’t have to use other tools.

(Read more: How Monsanto’s glyphosate attacks our core cellular functions)

(Read more: A quick guide to 7 popular toxin binders)

(Read more: My Quell review)

Fatigue

An intensification of fatigue is tough to treat because there aren’t that many options unless you’re willing to try stimulant medications, but here’s my short list:

(Read more: 23 clinically-proven ways to reduce fibromyalgia fatigue)

(Read more: Transforming the experience of rest)

(Watch: How yogic sleep can help you rise up)

Shin pain Neuropathy/burning in my feet Bladder urgency

I’ve dealt with that “gotta go, go, go” feeling for years because Lyme loves my bladder! It’s misery when my bladder gets angry.

  • Take an extra dose of Hyophen, my prescription overactive bladder medication. (I normally take two a day, but my prescriptions allows for three.)
  • Take over-the-counter AZO Urinary Pain Relief.
  • Drink plenty of water to flush out irritants.
Lower back pain

I carry most of my chronic pain in my lower back now due to a bulged disc. These are my favorite tools when it flares up:

  • Put on my ActiPatch device if I’m not already wearing it.
  • Put on my Quell pain-relieving device if I’m not already wearing it.
  • Do my physical therapy back stretches.
  • Use my heating pad.
  • Use the Tramadol/acetaminophen combination mentioned above.
  • Apply topical cannabis rub from my local dispensary.
  • If I’m having sciatica, take prescription gabapentin or a muscle relaxer.
  • If none of these work, use medical marijuana, go to bed and call it a day!

(Read more: My ActiPatch review)

(Watch: The McGill Big 3 lower back pain exercises)

Brain fog

I haven’t really found a good remedy for dealing with an increase in brain fog. I just have to let it pass on its own.

However, my coach Julie Holliday from ME/CFS Self-Help Guru has introduced me to the concept of energy matching, which has been enormously helpful. In simple terms, energy matching involves choosing activities based on your current level of energy level/brain functioning.

For example, if I’m super brain foggy, I have an extremely difficult time writing or reading. When that feeling hits, I look at my to-do list and see what activity I could reasonably accomplish with a foggy brain. Usually these are more administrative tasks such as filing papers, scanning documents or answering emails. Using energy matching, I’m still able to be productive instead of sitting in front of the computer for hours, hopelessly trying to string words together.

Nausea or tummy upset

I usually get nausea when I’ve reacted to some sort of offending food or chemical. My first line of defense is always a binder.

TMJ (jaw pain) Hip pain General joint pain
  • Apply topical cannabis rub from my local dispensary.
  • Take acetaminophen or other over-the-counter anti-inflammatory medication.
  • Use the infrared sauna.
Can’t sleep Feeling down
  • Sit in the sun and/or spend time outdoors.
  • Go for a gentle walk.
  • Watch “The Office” (U.S. version) or some other funny TV show/movie.
  • Love on my pets.
  • Connect with friends/family/spouse.

That’s it for my “if this, then that” plan so far! Obviously this will be evolving over time as I find new tools and symptoms change. What would be included in your “if this, then that” plan? Share in the comments!

The post The if this, then that approach to managing fibromyalgia & chronic Lyme flares appeared first on Fed Up with Fatigue.

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1.

ScienceDaily: Does insulin resistance cause fibromyalgia?

From the article: “Researchers led by a team from The University of Texas Medical Branch at Galveston were able to dramatically reduce the pain of fibromyalgia patients with medication that targeted insulin resistance.”

2.

Lowell Sun: Uptick of hope in battle against Lyme disease

Notice how they don’t use the word “vaccine” when that’s really what they’re working on…

3.

Prohealth: A quick guide to 7 popular toxin binders

Binders are frequently discussed in the Lyme community but few in the fibromyalgia community have heard of them. That’s really a shame because I think a lot of people with fibro would benefit. I believe I’ve read binders were instrumental in helping the Fibro Lady recover from fibromyalgia. I know cholestyramine and bentonite clay have been incredibly useful in my own healing journey.

4.

Health Rising: Marijuana as medicine for ME/CFS and/or fibromyalgia part 1: The science behind cannabis

From the article: “Fibromyalgia studies that have examined the relationship between cannabis use and symptom relief found that patients who use cannabis experienced a significant reduction of pain and stiffness, enhanced relaxation, and increased somnolence and feeling of well-being relative to those who do not use cannabis.”

5.

Lady of Lyme: Lyme disease supplements and medications to help ease symptoms

Christina, the blogger behind LadyofLyme.com, has compiled a really great list of tools for Lyme disease. It’s worth the click!

And an extra…

Tiny Buddha: 45 simple self-care practices for a healthy mind, body and soul

The post May 10, 2019 fibromyalgia and chronic Lyme news appeared first on Fed Up with Fatigue.

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1.

Stanford Medicine: First diagnostic test for chronic fatigue syndrome identified

(Note: I don’t generally post many articles about ME/CFS these days, but this is important news to share since many of you are also diagnosed with ME/CFS.)

From the article: “With strong preliminary evidence of a diagnostic tool for ME/CFS, Davis and his colleagues are moving forward to test it in more patients. They are also planning to use the nanoelectronic assay to screen for drugs that can help stabilize the blood samples from ME/CFS patients.

2.

Sciencemag.org: Long-underfunded Lyme disease research gets an injection of money – and ideas

From the article: “The $6 million from the National Institute of Allergy and Infectious Diseases (NIAID) is slated to fund up to 15 projects. The funding ‘will get new technology out of the shadows,’ spurring development of nascent approaches and collaborations, says Maria Gomes-Solecki, a veterinarian at the University of Tennessee Health Science Center in Memphis who has designed an oral vaccine for mice and other rodents against B. burgdorferi.”

3.

Dove Medical Press: Obstructive sleep apnea co-morbidity in patients with fibromyalgia (YouTube video, 3 minutes)

A new Loyola University Medical Center study recommends obstructive sleep apnea screening for fibromyalgia patients after researchers find a link between the two conditions. Read more here.

4.

LymeDisease.org: Amended complaint in Lyme lawsuit; battle lines are drawn

From the article: “Represented by three well-known Houston law firms, the patients assert that insurance companies paid key doctors associated with the Infectious Diseases Society of America to develop and enforce care guidelines that sharply limited treatment and drove doctors who treated outside the guidelines out of business.”

5.

National Public Radio: Words matter when talking about pain with your doctor

This article from last year discusses the problems with the current pain scale used by most physicians and includes tips for better communication with your doctor about chronic pain.

And an extra …

Lemons ‘N Lyme: Stretching routine for chronic illness (YouTube video, 6 minutes)

Victoria from Lemons ‘N Lyme shares a short, gentle stretching routine for those with Lyme, fibromyalgia and similar conditions.

Free stuff!

My coach, friend and fellow chronic illness blogger Julie Holliday from ME/CFS Self-Help Guru is offering up a couple of freebies this month in recognition of the annual ME/CFS and fibromyalgia celebrations.

During May, you can participate for free (normally around $23/month) in Julie’s weekly online chronic illness support group, which meets Tuesdays at 11 a.m. EDT/4 p.m. UK time. Julie is also offering a free month of access to her bi-monthly online meditation group, which meets on the second and fourth Monday of each month at 1 p.m. EDT/6 p.m. UK.

I’ve been participating in Julie’s programs for several months now. Her gentle, encouraging approach to thriving with chronic illness was a lifesaver for me when I went through a recent health crisis. I just love her and her work!

If you’d like to try out either of these groups, please email Julie at info@mecfsselfhelpguru.com, and tell her Donna sent you! You won’t regret it!

This week on FedUpwithFatigue.com…

How to roll away your fibromyalgia pain

The post May 3, 2019 fibromyalgia and Lyme news appeared first on Fed Up with Fatigue.

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This is a guest post by Andrea Wool, fellow fibromyalgia warrior and founder of Autoimmune Strong, a fitness program developed for those with chronic pain conditions such as fibromyalgia. This post contains affiliate links.

I was an active person before fibromyalgia changed my body. I was a go-getter, someone who threw myself into my long work days. I was a long distance runner, a gym rat, a skier. I was someone who loved to go out, to travel, to hike and camp, the life of the party.

Andrea Wool, founder of Autoimmune Strong

That all changed once fibromyalgia hit. I went from this person who lived a full life to someone who struggled to get off the couch. I lived with debilitating exhaustion and fatigue, and every daily activity was a challenge. On the surface, I looked normal, like nothing was wrong. But inside, to say I was struggling was an understatement.

After my diagnosis, I tried to resume my old life. That included time in the gym. I knew exercise was good for my body. Medical studies have shown exercise can actually reduce the symptoms of fibromyalgia, but these studies also indicate it is important to manage the levels of intensity of exercise in order to achieve positive results.

I had experienced this firsthand. All the exercise I was trying to do (modeled after my pre-diagnosis exercise routine) wasn’t making me feel good. Instead, it was making me feel worse.

I knew I had to try something new and change up my exercise routine. At the time, self-myofascial release, otherwise known as foam rolling, was getting some press as the hot, new fitness trend. Prior to this, I had found massage to be successful at reducing my pain, but it wasn’t something I could do all the time because it was too expensive, required too much time and scheduling, and was often so intense I needed a lot of recovery time. Foam rolling seemed like a good alternative.

Once I tried it, I fell in love. Well, love-hate, which I will explain in a bit.

What is foam rolling?

Foam rolling is a method of reducing muscle tension using a combination of a roller and your body’s pressure. It works in three important ways:

#1 Foam rolling helps to loosen fascial tissue

Fascia is the connective tissue that wraps around our muscles. If you imagine an electrical wire, the fascia is like the rubber that protects the live wires. In a similar way, fascia wraps around our muscles to keep them safe and secure.

However, as we age, fascia can get tight and inflexible, and glob onto the muscles, making it difficult for them to work properly. This causes pain within the body, and for people living with fibromyalgia, this additional pain can be excruciating. Foam rolling loosens up the fascia, relieving the discomfort and allowing the muscles to work properly.

#2 Foam rolling helps to relieve tight muscles

Our muscles work together in a pulley system in our body. Every muscle connects to another muscle. As we get older, and physical patterns take hold in our body, certain muscles get too tight while others become weak. This creates muscular imbalances, causing pain in the body. This pain is magnified in a body living with fibromyalgia.

Here’s an example of a common muscular imbalance: We sit a lot on couches, at our computers, in our cars, etc. As we sit, our hip muscles shorten and become tight, and our gluteal muscles get weak. Eventually that relationship loses its structural stability. The tight hips can’t be balanced out by the weak glutes, and this can result in low back pain, as the back muscles try to overcompensate for the weakened gluteal muscles.

Foam rolling can help loosen up these tight muscles, allowing the muscular system to come back into balance. It’s important to note here that balance can’t be achieved until you also work to strengthen the weak muscle, but foam rolling the tight muscle is a good place to start.

Additionally, by relieving these tight muscles, we can reduce the pressure and tension on our joints, which can reduce our joint pain.

#3 Foam rolling helps to reduce muscular knots

People living with fibromyalgia often have a large number of muscular knots in their bodies, and these knots can be a major source of pain. Knots respond to pressure and eventually release after pressure is applied. This is how foam rolling works!

Is foam rolling good for people with fibromyalgia?

Yes! Foam rolling can be very beneficial. By releasing the pain caused by tight fascia, muscles and muscle knots, people with fibromyalgia can move with more ease. They experience a reduction in stiffness, joint pain, muscle aches and general physical discomfort.

However, there are a couple of really important things to know before you begin a foam-rolling practice if you have fibromyalgia.

#1 Foam rolling hurts, especially in the beginning

There is no easy way to say this: Foam rolling can be extremely painful, especially during the first few days. If your fascia is tight, or you have lots of muscular knots, foam rolling can be tough as you work through it, but eventually the pain will go away, and you will be able to foam roll with (relative) ease.

#2 Foam rolling can release long-held toxins

Toxins come from many sources including the water we drink, the air we breathe and the food we eat. Our bodies often have a hard time flushing these toxins out. Foam rolling can help this process along by pushing long-held toxins out of the fascia and muscle tissue.

In the beginning, however, this can overload your system. It’s important to go slowly and gently into the foam-rolling process.

(Quick note from Donna: Drinking lots of water and using a good binder like bentonite clay in tandem with foam rolling can help absorb the released toxins and flush them from your body more quickly, reducing inflammation and pain.)

#3 Foam rolling can also release painful emotions

We store a lot of our emotions in our physical body. People with fibro often feel a flood of emotion when they begin to foam roll as their stored pain begins to release. Again, like the toxins, this will pass, but don’t be surprised if you find yourself crying during or after your foam rolling sessions. It will actually feel good to release those emotions.

Is there a risk of a fibro flare with foam rolling?

The short answer is yes. I would love to tell you otherwise, but I would be remiss if I didn’t give you the full information about the risks and rewards of foam rolling. The rewards are substantial, but due to the intense nature of foam rolling, there is a risk of a fibro flare, especially in the beginning of the process.

The key to foam rolling without triggering a flare is to follow these guidelines:

Listen to your body. If your pain is excruciating, then just start with a small bit of foam rolling – from 5-30 seconds – and start with one body part at a time.

Take rest days in between. Don’t foam roll every day. If you are sore, make sure you give yourself time to recover before you do it again.

Slowly build up your tolerance. Don’t rush it! Change takes time.

Okay, I am interested in foam rolling, but where do I start?

All you need is a foam roller! There are different foam rollers with different densities, bumps and other features so look for one that has a level of intensity that matches your body. (If you are super sensitive and flare easily, start with the softest one. I recommend this one).

If you google foam rolling, you will find tons of how-to videos that are quite good at teaching the actual movements. Start with the big muscles, like your quads, calves and hamstrings. You can even foam roll the bottoms of your feet with a tennis or golf ball!

If you feel a spot that is more intense than others, that is a muscle knot. I recommend holding foam-rolling pressure on knots for 30 seconds (or as long as your body can take the intensity; you may need to start with just 5 seconds). That will begin the process of releasing the knot and relieving pain in the body.

However, as someone living with fibromyalgia, I encourage you to consider a few things before starting a foam-rolling practice. As I mentioned above, foam rolling can cause a flare if not done right. For people with limited strength, it can be difficult to begin because a standard foam-rolling routine requires the ability to get up and down from the floor as well as significant core and arm strength. Foam rolling on its own without additional strength training is not as effective.

If you are nervous about trying foam rolling on your own and want some guidance on how to do it safely without a flare, I want to share with you the 7-day free trial of Autoimmune Strong. Autoimmune Strong is an online fitness program designed for people living with chronic pain. It teaches everything you need to know about building strength and energy through exercise without triggering a flare. There is an entire section dedicated to foam rolling for pain reduction as well as instruction on how to make modifications if it’s too difficult.

Additionally, Autoimmune Strong will help you gain the core and arm strength you need to be able to foam roll effectively. All of this is done in a way to help you reduce pain and gain energy without kick-starting a flare.

Check out the 7-day free trial here, and begin the journey to feeling good in your body again!

Andrea Wool is a personal trainer living with fibromyalgia and multiple autoimmune conditions. She is the founder of Autoimmune Strong, the first online exercise program designed to help people with chronic illness regain their strength and energy through exercise. She is a wife, a daughter and a mom to two crazy boys, and lives in Massachusetts. To learn more about Andrea and her story of illness to recovery, follow her on Facebook, Instagram or on her blog.

The post How to roll away your fibromyalgia pain appeared first on Fed Up with Fatigue.

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1.

Pain News Network: CDC [says] opioid guideline should not be used to taper patients

From the article: “In an impassionate commentary published in The New England Journal of Medicine, the guideline’s authors say the agency does not support abrupt tapering or discontinuation of opioid medication, and that the guideline’s recommendation that daily doses be limited to no more than 90 MME (morphine milligram equivalent) should only be applied to patients who are starting opioid therapy.”

2.

Newsweek: Untreatable form of Lyme disease could hit 2 million Americans by 2020, scientists warn

From the article: “‘Although antibiotic therapy cures most [Lyme disease] patients, a significant proportion of patients continue to suffer persisting symptoms that can derail normal life,’ the researchers wrote.”

3.

Selfhacked: Innovative research on neuroinflammation, pain and fatigue with Dr. Jarred Younger (YouTube video, 61 minutes)

A long-form interview with Dr. Jarred Younger from the University of Alabama at Birmingham in which he discusses his fibromyalgia and chronic fatigue research.

4.

Medical Xpress: Three-antibiotic cocktail clears ‘persister’ Lyme bacteria in mouse study

More details on the latest Johns Hopkins antibiotic trial.

5.

Business Insider: The best muscle rubs you can buy

From the article: “The muscle rubs in this list are tried-and-true performers. They’re effective, not greasy, and while some are scented, the fragrance is minimal. These muscle rubs can make a great addition to your medicine cabinet and be a complementary treatment to pain medication, stretching, and hot and cold therapy.”

And an extra…

Michigan Medicine: Health library

This is a great little resource to check if medications may be depleting your vitamins and minerals. It also gives tips for how to reduce side effects and lists known drug interactions. Drugs are listed in alphabetical order.

My latest Vitacost haul

I filmed a quick 9-minute Vitacost haul this week! Check it out below.

The post April 26, 2019 fibromyalgia & Lyme news appeared first on Fed Up with Fatigue.

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This article was originally published on National Pain Report. It is being republished here with permission from the editor.

When I developed a severe headache and neck pain after breakfast on June 30 last year, I didn’t think anything was out of the ordinary. I have fibromyalgia and chronic Lyme so unexpected symptoms are not unusual for me. I popped some over-the-counter pain killers and settled onto the sofa for a Netflix marathon, figuring it would pass.

Little did I know I’d be stuck alternating between that sofa and my bed for the next 7+ months. I’d wake up each morning feeling fine, but within an hour or so of being vertical, I’d have to lie down because the headache would return.

It took more than two months, three neurologists, five MRIs and a three-day cisternogram to finally figure out the cause of my orthostatic headaches and neck pain: I had a spontaneous cerebrospinal fluid (CSF) leak.

My diagnosis was only step one of the process. In total, I was out of work and absent from my role at National Pain Report and here on my blog for more than nine months as I tried to find a doctor who could finally plug that tiny, life-sucking leak.

Even though I’ve been sick for years, I’d never been bedbound. These past few months gave me a whole new level of compassion for those who are confined to bed by chronic illness. Here are a few of the lessons I learned from seven months of lying flat.

Lesson #1: Work isn’t everything

My work has always been a large part of my identity because it’s the one area of my life where I’ve excelled. But what happens when you’re stripped of your work and all that is left is you?

During the first few months of the leak, I was desperate to get back to work. I didn’t know what to do with myself, and quite frankly, having that much time to lie around and think made me pretty anxious. I didn’t want to deal with all of the thoughts and emotions I’d avoided for 40+ years by throwing myself into my jobs.

But as the months passed, I became less defined by my role as a reporter and blogger. I realized my worth as a person is not tied to my ability to win writing awards or have my editors praise my latest article. I am perfectly ok just as I am, whether I pay taxes as an employee or not.

We can still have purpose in life even if we aren’t able to give back to society through employment.

Lesson #2: Always do your own research

I have a friend who’s criticized me because I spend so much time online researching my chronic medical conditions. She says I should just let my doctors do their jobs. Of course, she’s relatively healthy and doesn’t have a clue about how dysfunctional our medical system really is.

The reality is if I had “let my doctors do their jobs,” I would still be in bed and likely filing for disability right now.

I diagnosed my CSF leak using Dr. Google weeks before my doctors did. It took me one afternoon of online research to find out there are only three causes of orthostatic headaches, and two of those could be ruled out in my case.

But since spontaneous CSF leaks are rare, my doctors weren’t convinced of my self-diagnosis. I found that I constantly had to educate them about CSF leaks and my treatment.

I think the average healthy person gives too much credit to medical doctors. The truth is they don’t have all the answers, and most are too overworked and stressed out to take the time to figure out medical mysteries. I have yet to meet a real-life Dr. House like the one portrayed on TV.

The bottom line is if I hadn’t dug into the CSF leak research online myself and aggressively advocated for my care, I’m certain I would still be bedbound today.

Lesson #3: Rest is healing

After my fibromyalgia diagnosis in 2014, I fully embraced the warrior mindset. If something really needed to get done around the house or for work, I would push myself through it even if it meant extra pain and fatigue after the fact.

I initially tried that same strategy when dealing with the CSF leak with excruciating results. The more I pushed to stay upright, the more intense the headache would become until I was completely debilitated.

It wasn’t long before I realized it was easier to prevent the headaches by lying down than it was to get rid of them after they’d started. Over time, I came to a place of surrender. This was my situation. I couldn’t change it. I couldn’t speed it up. I just had to live in the moment and hope for the best.

There was a huge blessing that came with seven months of lying flat. Spending all that time resting was extremely healing for my body. My Lyme/fibromyalgia symptoms are better now than they were pre-CSF leak because I finally surrendered the need to get things done, and just let my body rest.

Lesson #4: It’s ok to ask for help

This was probably the hardest lesson of all. Using a common southern expression, I would rather bust a gut than ask anyone for anything.

But the CSF leak forced me to set aside my dogged independence. I had limited time on my feet each day so that meant I often had to rely on my husband to do the grocery shopping and household chores.

For two weeks after my third and final blood patch to repair the leak, he basically had to do everything because I was on bed rest except to use the restroom, shower or eat. Bending and lifting anything more than a gallon of milk were prohibited.

I cringed every time I had to ask my husband to put the clothes in the dryer or bring me a drink. I hated the role of patient but it did get easier with practice.

Most of us with fibromyalgia or chronic Lyme are can-do kind of people. Unfortunately, our diehard independence can be detrimental for our health. When we push beyond our capabilities, we end up paying the price with increased pain and fatigue.

Like I mentioned above, it’s easier to avoid a flare than to mitigate it once it’s occurred. We have to pace ourselves, and part of that involves asking for help sometimes. It’s ok to admit you can’t do it all. Even warriors get help from their brethren on the battlefield.

Lesson #5: This, too, shall pass

Life becomes pretty small when you’re confined to bed 22 hours a day. I had a lot of dark moments over those months. At first, I was scared the doctors wouldn’t find the leak because the testing is so unreliable.

Then, the first two blood patch procedures to plug the leak failed.

I sunk into a funk and started to wonder if I was going to spend the rest of my life in bed. I went to that place over and over in my mind until one day I realized that would never happen to me because I wouldn’t allow it!

I would do whatever I needed to do to get better. If that meant flying across the country to California to see the best CSF leak specialist in the world, I would do that, somehow, someway.

This CSF leak was just another pothole in my life. I would get around it, eventually. I found peace when I reminded myself of the ebb and flow of life, how nothing is constant, everything changes, and how this, too, shall pass.

The post 5 lessons I’ve learned from 7 months in bed appeared first on Fed Up with Fatigue.

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1.

Street Insider: Tonix Pharma (TNXP) announces plans to expand TNX-102 SL phase 3 program beyond PTSD to include fibromyalgia

From the article: “Tonix believes that increasing the dose of TNX-102 SL from 2.8 mg to 5.6 mg in the new Phase 3 fibromyalgia study will likely provide the clinical evidence to support the 5.6 mg dose as the efficacious dose for the management of fibromyalgia.”

2.

Global Lyme Alliance: Global Lyme Alliance reveals several drugs and drug combinations that show success in treating Lyme disease

This is a comprehensive update on various research efforts funded by the alliance.

3.

Fibromyalgia News Today: Overall working memory not impaired in fibromyalgia patients, study suggests

From the article: “According to the study … fibromyalgia patients only presented minor alterations in visuospatial working memory, which could be explained by the intensity of fatigue and depression.”

4.

Today.com: Scientists predict coming tick season

From the article: “Ostfeld’s group is one of the few actually monitoring tick numbers. And that’s unfortunate because knowing how many ticks are around would help researchers determine whether interventions designed to reduce tick numbers are working.”

5.

Pain News Network: 48 alternative therapies to help lower pain levels

This is the final installment of Barby Ingle’s ABC series of chronic pain treatments. It includes links to all of her previous columns in the series. Lots of good ideas in these articles!

And an extra…

Dr. Jay Davidson: Draining is life-sustaining – How to support the body’s drainage system

Addressing drainage and detoxification have been game-changers for my personal health journey. I believe these concepts are a missing piece of the puzzle for many of us with fibromyalgia, chronic Lyme and similar conditions, and are responsible for much of our day-to-day suffering.

Kickstart Your Fight Against Fibromyalgia

My fibro friend and fellow blogger Melissa Reynolds from Melissa vs. Fibromyalgia is launching a new foundational program to help others better manage their condition. Here’s a short video with more information.

The post April 19, 2019 fibromyalgia and chronic Lyme news appeared first on Fed Up with Fatigue.

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This article was originally published on National Pain Report and is being reprinted here with permission from the editor. It may contain affiliate links. 

In 2016, I shared a few of my favorite things for relieving fibromyalgia symptoms. That article is still one of the most popular ones on FedUpwithFatigue.com. A lot has happened since then, so I think it’s time to publish an updated list.

Below are some of my current favorites for managing and healing from fibromyalgia and chronic Lyme. I’d love to read about what’s helping you in the comments section!

Disclaimer: This article is for informational purposes only. It is not a substitute for working with a qualified medical professional. Readers are encouraged to conduct their own research and discuss their findings with their medical providers.

#1 – Whole foods diet

What I eat makes a HUGE difference in how I feel physically and mentally. I don’t follow any particular diet, but if I was pressed I would say it’s closest to the paleo diet. I avoid gluten, dairy, soy, genetically-modified corn, processed sugar, most processed foods, most fast food, soda, artificial sweeteners and food additives like MSG.

(Read more: Why you can’t medicate your way out of poor diet & lifestyle choices)

(Read more: Pesticide linked to cancer is in nearly every U.S. food)

(Read more: How going gluten free may help with fibromyalgia)

If you follow a standard American diet, you’re probably wondering, “What the heck do you eat?” My diet is comprised of mostly whole foods: meat, seafood, vegetables and fruit. I do still eat some starchy foods like white potatoes and rice, which would be a big no-no for someone who is strict paleo.

I eat clean probably 90 percent of the time. I do still allow myself a cheat meal here and there – usually when I eat out at a restaurant – but that treat comes with increased digestive issues, pain, fatigue and brain fog for a few days (although after years of eating this way, I’ve noticed I don’t react as strongly to off-plan foods as I once did). It’s not that eating clean makes me feel so much better; it’s that I feel worse when I don’t eat this way!

(For those interested in trying an elimination diet, I would check out the Whole 30 diet.)

#2 – Otoba bark and cat’s claw (aka banderol and samento)

Shortly after writing my 2016 favorites article, I was diagnosed with chronic Lyme disease and several co-infections. My doctors at the time indicated my fibromyalgia symptoms are likely caused by these infections, and my condition should improve as they are treated.

(Read more: My current treatment protocol for chronic Lyme and fibromyalgia)

I’ve taken many herbs and supplements over the years, but otoba bark and cat’s claw (aka banderol and samento from the Cowden protocol for Lyme disease) are two that have made a big difference in my symptoms. These tinctures do a fantastic job of killing and suppressing the infections in my body. Since starting them in late 2017, I have much less chronic pain and fewer overactive bladder symptoms. I know it’s the otoba bark and cat’s clas that’s helping with these symptoms because I’ve stopped using them a couple of times, and my symptoms rage back to life.

My fibro readers are probably thinking, “Well, that’s great, but I don’t have Lyme, so how is otoba bark and cat’s claw going to help me?” First, I would say many of my fellow fibro warriors likely DO have undiagnosed chronic Lyme and don’t know it. The testing sucks! It only catches around half of Lyme cases, so if you tested negative in the past, you may still have it!

(Read more: 4 reasons a Lyme test will come back negative even if a person truly has Lyme disease)

(Read more: It may not be “just fibro” – it could be Lyme disease)

(Read more: Are your fibromyalgia symptoms due to Lyme disease?)

Second, there are more and more researchers who theorize fibromyalgia may be caused by a malfunctioning immune system. Lyme and other co-infections are known to suppress the immune system, so if you think undiagnosed infections could be a piece of the puzzle for you, it might be worth your time to research otoba bark and cat’s claw and see if they might be beneficial for your situation.

#3 – ConcenTrace Trace Mineral Drops

I included both oral magnesium and topical magnesium in my 2016 favorites article. I still use each of these almost daily because magnesium has so many benefits. Last year, my current Lyme doctor suggested adding ConcenTrace Mineral Drops to my regime because I suspect I gave myself a nutrient deficiency from lack of appetite and the overuse of cholestyramine as a binder.

Magnesium is the main ingredient in ConcenTrace, but it also includes more than 70 other trace minerals. Due to industrialized farming, it’s hard to get these important minerals from food alone so using a liquid supplement like ConcenTrace is an easy way to improve overall nutrition.

I wish I had added ConcenTrace Mineral Drops to my protocol sooner because this stuff has so many benefits! I’ve noticed so far less soreness/achiness throughout my body, less leg/foot pain, less dizziness and lightheadedness upon standing, fewer foot cramps and my hair isn’t falling out in clumps anymore!

Like otoba bark and cat’s claw, if I stop taking ConcenTrace, I can feel a difference within a few days.

#4 – Coffee enemas

I wrote an entire article about the wonderfulness of coffee enemas last year, so I won’t go into all of the details here, but coffee enemas have been an absolute game changer for me symptom wise. They’ve been great for lowering pain and inflammation, boosting energy and increasing my ability to focus.

While I realize coffee enemas aren’t for everyone, they can be helpful for those who are open to trying unconventional therapies.

(Listen: Everything you never wanted to know about coffee enemas)

#5 – Medical marijuana

I saved medical marijuana for last because I know not everyone has access to it. I included hemp CBD oil in my 2016 favorites list. Hemp CBD is an alternative for those who live in states where medical marijuana is not available.

(Read more: What you need to know about using CBD oil for fibromyalgia)

(Read more: How to choose hemp CBD oil)

In fall 2016, I was approved for the medical marijuana program in my state. I’m probably a little different from most medical marijuana users in that I primarily use it for sleep and bedtime pain relief. I initially experimented with using CBD-rich strains for daytime pain relief, but I was never able to find a product that relieved pain without making me feel loopy.

I use two forms of cannabis at bedtime. First, I vape cannabis to help me relax so I can fall asleep. My favorite strain is MK Ultra. The vaping wears off in about an hour, so I also take either Rick Simpson Oil or cooking hash orally to help me stay asleep.

I sometimes read about cannabis users who say it completely took their pain away. That hasn’t been my experience, but it does muffle the pain so I don’t perceive it as much. For me, the real benefit has been in how it’s deepened and prolonged my sleep. When I started using cannabis, I woke up every hour or two, and then struggled to fall back to sleep. Now I average one wakeup a night. I’ll take that improvement any day!

(Read more: Best cannabis strains for fibromyalgia)

(Read more: Best cannabis strains for sleep and insomnia)

So now it’s your turn: What reduces your symptoms of fibromyalgia and/or chronic Lyme? Share in the comments! 

The post 5 more of my favorite things for fibromyalgia and Lyme relief (2019 edition) appeared first on Fed Up with Fatigue.

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