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What You Need to Know About Fibro Flares

A fibro flare is a flare of symptoms that can occur at any time and can last for any duration. You may wake up feeling just fine but at mid-day suddenly feel as if you’ve been hit by a freight train. That feeling may last until you get a good night’s sleep or it may continue for days or weeks.

A fibro flare might include any combination of your symptoms, or it might just be a single symptom. When it comes to fibro, though, a flare will most likely include increased pain or fatigue, or both.

The one thing that’s certain is that fibro flares are unpredictable and frustrating. 

The one thing that's certain is that fibro flares are unpredictable and frustrating. #fibroflares #fibromyalgia
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What are symptoms of a fibro flare?

A fibro flare is an increase in fibromyalgia symptoms, primarily widespread body pain and fatigue. Often you will feel like you have the flu, just generally exhausted with pain all over.

Your symptoms during a fibro flare will be unique to you and probably even unique from flare to flare. Those symptoms may include any combination of the symptoms you experience with fibromyalgia, but will most likely include at least fatigue or pain – most likely both. 

Often a flare in the major fibromyalgia symptoms (pain and fatigue) will also result in a flare in other symptoms including dizziness, inability to concentrate, digestive symptoms, and migraine.

How long to fibro flares last?

A fibro flare can last any length of time from hours to weeks, sometimes months or longer. During my early days with fibro, it seemed I lived in one long fibro flare that lasted for most of about two years. I’d have occasional “good” days where I felt pretty decent, and I can recall one really great month. But, during that time I was definitely in a flare more often than not.

Since I’ve gotten my symptoms under control, my flares are typically much shorter, rarely lasting longer than a day and most often just lasting for about half a day. Now, it’s most common that I will wake up feeling poorly, but by hydrating and not pushing myself I can regain energy and begin feeling better as the day wears on.

What causes a fibro flare?

A fibro flare can be caused by anything or seemingly nothing at all. Any change to your A few of the most common causes are:

  • stress (physical or mental)
  • weather and temperature changes
  • diet (certain foods may be triggers for you)
  • over-exertion (physical or mental)
  • illness, injury, or surgery
  • travel (or any change to your routine)
  • sleep disruptions
  • changes in treatment

Read more on the most common causes for fibro flares and how to deal with them.

How do you decrease fibro flares?

The first step to decreasing your fibro flares is to find your specific triggers. You may find it helpful to keep a journal, tracking what is going on in your life, the weather, and what you eat, as well as how your symptoms vary. This can help you find what you can adjust in your life to help reduce flares.

My biggest trigger was diet. When I changed my diet and removed the foods that were making me feel worse the fibro flares all but stopped. I went from barely getting off the couch to finally having energy. And, my pain levels decreased dramatically.

But, diet isn’t my only trigger. The others I’ve mentioned above are still in play. Sometimes they can be avoided and other times they can’t. I just do the best I can to control them.

The best thing I can do is limit stress – both physical and mental. I find that regular meditation is a great way to limit mental stress. Also, controlling my work environment, and how much I commit to.

Sometimes people can contribute to mental stress, so I find it important to be wise about who I spend time with, specifically avoiding toxic people and those who would simply take up my energy. 

Pacing is an excellent way to reduce physical stress, and avoid over-exertion. It’s too easy to push ourselves and end up paying for it. Pacing simply means taking breaks regularly to sit down and really consider how you are feeling, and stopping when your body indicates the need.

It is largely believed that sleep issues may be at the root of fibromyalgia. With that in mind, one of the best things we can do is improve our sleep. If you’ve not had a sleep study yet, talk to your doctor about doing so to rule out sleep apnea or other major sleep disorders that can be treated.

If you’ve already had a sleep study and they’ve not found a treatable cause for your sleep issues, you may want to consider one of these natural ways to improve your sleep.

How do you ease the symptoms of a fibro flare?

What you can do to help improve your symptoms during a fibro flare depends greatly on what symptoms you are dealing with. The best thing you can do is avoid fighting it, but sometimes you just don’t have the choice to rest during a flare.

What you can do to help get through the day with a fibro flare:

1 . Hydrate – drinking water will help flush any toxins that may be causing inflammation, but hydrating also improves blood flow, decreases fatigue, cools your body, lubricates your muscles and joints. Proper hydration can also help improve working memory, focus, and concentration

2. Eat Right – Eating a poor diet will only make you feel worse. Try to eat a healthful diet full of whole foods, avoiding processed foods, sugars, and other foods that can cause inflammation

3. Control for Stress – You may not be able to completely avoid stress, but try to control it as much as possible. Even simply taking breaks throughout your day to meditate can help.

Check out these 6 tips for working during a fibro flare.

How do you shorten fibro flares when they occur?

No matter how much I’ve improved my fibromyalgia symptoms as a whole, I still have bad days. You simply can’t avoid fibro flares completely. But, I’ve learned that a few simple steps can really help me shorten those flares when they occur

1 . I focus on rest – if at all possible I don’t do anything when I’m in a flare. I just rest. I don’t work, I don’t clean, I don’t cook, I don’t do anything really engaging. I might watch TV or play a video game. I treat myself as I would with any other acute illness. 

2 . I hydrate – I drink lots of water and also try to add in electrolytes. I avoid caffeine, even though the inclination would seem to be that caffeine would boost my energy. It’s counter-intuitive to drink caffeine when my goals are to hydrate and to rest.

3. I avoid stress – This may mean not answering my phone or looking at text messages, but it definitely means avoiding work and avoiding people who may eat away at my energy or make me feel stressed. 

4. I ask for help if needed – This is something I struggle so much with. But, I am learning that it’s OK to ask for help and that there are those who will provide it as much as they can. Part of avoiding stress means knowing who to ask. So, if you don’t have someone who has proven they will help, it may be less stressful not to ask.

5. I keep a flare kit readyA flare kit is any combination of items that help you get through  bad day. This may include a hot pack, pain relievers, a tablet for reading or watching videos, a favorite playlist

Fibro flares are probably the most frustrating aspect of fibromyalgia, because you never know when they will occur or how long they will last. Just knowing that they can occur can create stress and anxiety that can create a self-fulfilling prophecy – the flare itself. 

But, making a few key changes can help you greatly reduce the likelihood that a fibro flare will occur, and proper planning can help you minimize fibro flares when the do occur.

Making a few key changes can help you greatly reduce the likelihood that a fibro flare will occur, and proper planning can help you minimize fibro flares when the do occur.
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The post What You Need to Know About Fibro Flares appeared first on Counting My Spoons.

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Are you wishing your life away?

Do you ever find yourself wishing your life away? Constantly thinking if I can just get to the weekend, or just get through this month, or get past this or that, things will get better? It’s a terrible place to be isn’t it?

This is something I’ve been struggling with lately as I’ve dealt with all this stress surrounding selling the house and moving.

Wishing My Life Away

My guy and I were talking about this, about how it started back in January with “if we could just skip ahead 6 months” and get past all the work we were having to do around the house. And, it’s not stopped since.

Then last week we were talking about how we wish we could just  skip to the end of the month. Closing is scheduled for June 25th and it just can’t get here fast enough. 

Funny to think that our 6 month target hasn’t changed. It was the end of June then and it’s still the end of June. Perhaps I can see the future? LOL. 

We thought that we’d have some time to rest after we got the house ready and on the market. Figured on a month or two of waiting for a contract and we were so looking forward to some rest during that month. A weekend to just relax and do nothing at all.

Of course, that didn’t happen. Because that’s not the way that life works. I got a contract he first day the house was on the market, and it’s been non-stop since then of trying to get the rest of my stuff moved. 

Then, just when we think that’s under control the buyer tells me he isn’t interested in keeping my appliances (after initially saying he wanted to buy them – no it wasn’t in the original contract), so I had to deal with selling those. 

So, again, no weekend to just rest and relax. And, here we find ourselves again just looking forward to it being over so we can rest, and have it all behind us.

Enjoy the Moment

Instead of wishing for the passage of time, I need to remember to be in each moment, to enjoy them for what they are. Yes, there may be stress that I’d love to not “enjoy” but there is so much more going on beyond that and when I get stuck in the mode of thinking forward I’m not enjoying those little moments, because I’m not there, I’m somewhere off in the future.

There have been many small moments that I’ve probably missed in the last 6 months because I’ve been so consumed with doing and with getting through this period. 

Looking back it makes me realize just how many moments I’ve missed throughout my life as I spent so much time wishing for time to pass.

I had years where I just spent each day wishing for it to be bedtime so the day would end and I could escape for a while. I’d spend my time looking forward to whatever big thing was coming, whether it was an end to something (finishing school) or a vacation.

I spent so much time focused on those things that I missed so much along the way. My time in Mindfulness Based Stress Relief really helped me and I found that for almost two years after taking that course I was much more attuned to the little moments. To being mindful of even the smallest moments. 

But, without focused practice, that habit fell away. I found that I was purposely meditating less and less often, and as a result that default mindfulness slipped away. Instead of really savoring a meal, or just time sitting, or whatever small thing, I began rushing, or just doing without really thinking.

I’m trying to get back to being in the moment. I’ve been making more of an effort to meditate daily, as well as whenever I start feeling anxious. Meditation is a great way to deal with anxiety IN THE MOMENT. Sadly, my default is often distraction instead of meditation. It’s something I’m working on.

While distraction can be a great tool for dealing with pain. It’s not good for dealing with anxiety. It doesn’t reduce anxiety, it just puts it off, and sometimes makes it worse.

I’ve been trying to take more time to meditate. When I feel anxious, instead of getting sucked up in the anxiety, or trying to distract myself from it by playing a game or surfing the web on my phone, I instead try to do 10 minutes of meditation.

I’ve really been enjoying the Insight Timer app as it has so many great meditations for just about any purpose you can think of. 

Don’t let all the moments pass you by while you are striving to get through the week. Remember to stop and savor the wonder that surrounds you, the time with your loved ones, the soft fur of your fur-baby, the warmth of the sun on your skin, and the smell of your favorite dish cooking (or being delivered).

Don't let all the moments pass you by while you are striving to get through the week. Remember to stop and savor the wonder that surrounds you
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CBD for Fibro Relief

If you’ve been around my blog much at all you know I’m a huge fan of CBD oil. I’ve continued to use CBD oil nightly since I first tried it about two years ago and finally started sleeping easily and well throughout the night.

CBD oil tincture is primarily what I use, but I also use topical CBD oil products, and recently have had the opportunity to try to some CBD oil capsules and other products from Every Day Optimal. The product I most recently tried is Fibro Relief CBD from Every Day Optimal. 

Fibro Relief CBD is a 25mg CBD + supplement capsule that you take daily on an empty stomach.  I took two capsules each morning before breakfast. 

Understanding CBD dosage

CBD dosage can be really confusing. You see tinctures with these really high amounts of CBD oil listed (300mg – 5000mg), then you see capsules and other products with what seems like really low dosages in comparison. 

I honestly had no idea why this was and thought that the capsules really just had way lower doses, so I was getting way more with the tincture, but that makes no sense. Then I talked to the owner of my local natural foods /supplement store and he explained.

The dosage on the capsules is what you are getting in a single capsule (in the case of Fibro Relief CBD that’s 25mg per capsule). This is usually pretty clear on the bottles. 

The number of CBD milligrams as listed on a bottle of CBD tincture, however, is the amount in the entire bottle.  I usually use a 1000mg bottle of CBD tincture. Each bottle contains 60 doses (1/2 dropper = 1 dose), so each dose is about 16-17mg. 

To be honest, I have always found droppers rather unreliable, when you suck the liquid into the dropper sometimes you get more than other times. Some droppers have little lines to help you know exactly where the dosage mark is, but most don’t. So, if you want a reliable consistent dosage, capsules are likely a better way to go.

What’s in Fibro Relief CBD?

In addition to CBD oil, Fibro Relief CBD contains:

  • Vitamin C – helps with tissue repair and immunity
  • Vitamin D3 – deficiency has been linked to depression and weight gain
  • Vitamin B12 – boosts mood, energy, & cognitive function
  • Folic Acid – improves nutrient absorption
  • Magnesium – reduces inflammation
  • Zinc – helps regulate immune function and reduce risk of chronic disease
  • Bacopa – antioxidant that can help reduce inflammation and improve brain function
  • Malic Acid – promotes energy production and decreases muscle fatigue
  • Turmeric – reduces inflammation
  • Acetyl L-Carnitine – improves physical and mental function
  • Coenyzme Q10 – antioxidant that helps provide energy to cells, can help prevent migraines
  • White Willow – reduces pain
  • Rhodiola – reduces stress
  • Alpha Lipoic Acid – antioxidant that reduces inflammation
  • SAMe – decreases pain and symptoms of depression
  • Celery Seed Extract – diuretic that can help reduce inflammation
  • Black Pepper Fruit Extract – improves absorption of Tumeric and other supplements

All of these supplements have shown to help various symptoms of fibromyalgia, as well as other common co-morbid conditions.

Does Fibro Relief CBD work?

In the end, it really doesn’t matter what it’s made out of, all that matters is if it works? 

Fibro Relief CBD is the first multi-supplement I’ve taken that also contains CBD oil. While taking it I continued to use CBD tincture nightly. 

Prior to taking Fibro Relief CBD I’d been having a new brand of headaches and an increase in symptoms as a whole. I’d allowed those to calm down prior to starting Fibro Relief CBD but they were still there. As I write this it’s now been a couple of weeks since I finished off the bottle.

Being able to compare how I feel both before and after, as well as during I can say that I do believe that Fibro Relief CBD did help with several symptoms.

I felt less anxiety and pain while taking it. I also experienced fewer migraines while taking Fibro Relief CBD daily. So, I would say that yes, it does work and it did help.

I don’t know that it has enough of the various supplements that I would consider using it in place of others, or as a primary multi-vitamin, but I do feel that the combination of elements work together well enough to be helpful.

Warning: Be careful and discuss using this product with your doctor prior to taking, as some of these may interfere or cause issues if you are on certain other medications. 

SAMe, in particular, shouldn’t be taken if you are on antidepressants. Always check with your doctor before introducing any new supplement to your regimen. 

All in all, I’ve been really impressed with all the of the products I’ve tried from Every Day Optimal. They seem to have the widest range of CBD oil products of any of the companies that I’ve worked with. In addition to the Fibro Relief CBD, they also have CBD for sleep (review coming soon), and CBD for stress and anxiety (I’ve sampled this one in the past and it works well). They offer CBD in tinctures, capsules, e-liquids, gummies, and chewing gum. The only thing they are really missing is topical products.

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How musician Dan Reynolds deals with a Monster Pain in the AS

Celebrities are just like us is a truth that we often forget… and sometimes they do as well, but not Dan Reynolds, lead singer for Imagine Dragons. Dan hasn’t forgotten the struggles that he’s gone through to get where he is, because in many ways they aren’t over.

It’s difficult for me to think of someone like Dan Reynolds as a “struggling musician” but there was a time when that was true. A time when he was a struggling musician with a newborn and no health insurance. During this time, he was struggling not only with anxiety and depression, but also Ulcerative Colitis (UC) and undiagnosed chronic pain.

This is a struggle I can identify with. Maybe not the parent of a newborn part, but certainly the trying to navigate a new marriage and a career while trying to find answers to the pain I lived with day after day. I was lucky though, I had insurance. I can’t imagine how much harder that struggle would have been had I not had insurance; had I been struggling to financially support a new family.

These days, Dan isn’t a struggling musician. Dan’s band, Imagine Dragons, is a phenomenal success by all accounts. Imagine Dragons has multiple albums and singles on the Billboard Top 100, and has won several awards including a Grammy, and multiple AMA awards.

Health insurance is no longer an issue for Dan. But that doesn’t mean he isn’t struggling. He’s still facing his mental and physical “Demons” – the depression and anxiety, as well as UC. His unexplained pain has since been diagnosed as Ankylosing Spondylitis (AS).

Dan is open about his struggles with all of these chronic issues. Dan’s openness goes beyond just words into actions. Many of the songs on his album, Night Visions, are inspired by his battle with depression. In 2017, he launched the charity music festival LOVELOUD to encourage acceptance of LGBT youth, with all profits going to LGBT organizations.

This year, Dan teamed up with global healthcare company Novartis to create the Monster Pain in the AS campaign, raising awareness for Ankylosing Spondylitis. His goal is to help others who are struggling find answers and treatment faster. It was through this campaign that I was provided the opportunity to talk to Dan about his experience living with chronic pain.

Dan’s journey with chronic pain begins

Dan’s chronic pain experience isn’t unusual. It began during an otherwise healthy stage of his life. He was an active guy in his early 20’s, working hard to launch a new band. Then suddenly one day while he was running down a mountain, he was struck with unexplainable pain that didn’t go away. The intense pain kept him awake at night. In the mornings, the pain continued and left him stiff.

Dan said that having dealt with depression and anxiety from a young age made him realize just how important it was to get help early.

Like most of us, Dan saw at least three or four doctors before his chronic pain was diagnosed. He went from doctor to doctor, with each thinking they knew what it was, ordering tests, and then sending him on to the next doctor. Dan says the doctors “were very sure of themselves until they weren’t.”

“Nothing is worse than dealing with bad health, all the other issues minimize when you can’t get out of bed without extreme pain. When you lose your health, it puts everything in perspective. When I finally received a diagnosis, it was a relief.”

Nothing is worse than dealing with bad health, all the other issues minimize when you can’t get out of bed without extreme pain. When you lose your health, it puts everything in perspective.
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Dan believes that had he had access to more information and better tools, he would have received a diagnosis faster, and that’s why he partnered up with Novartis for the Monster Pain in the AS campaign. They’ve put together a 5-minute quiz to help you determine if your pain may be caused by inflammation.

Chronic Illness Runs in the Family

Chronic illness runs in Dan’s family. Not just AS, but UC as well (AS often overlaps with digestive issues). He feels that receiving his diagnosis helped his brothers get theirs faster. While his brother (and manager) Mac was diagnosed a few years before Dan, another soon followed, with a second tentatively diagnosed. The two remaining brothers are now seeing a rheumatologist and expect that they will also be diagnosed with AS.

I asked Dan if he ever had a doctor tell him the pain was all in his head. This is a situation that is often portrayed as a strictly female experience. Generally, it is believed that the male pain experience is more believed. Dan’s answer surprised me a little. “The doctor alluded that it was just caused by stress. He asked if I struggled with depression and anxiety…” His brother got it even worse, with the doctor telling his mother that he was making it all up in his head. Thankfully, she didn’t listen.

Chronic illness affects all aspects of your life

As chronic illness usually does, Dan shared that his experience with chronic illness has affected every area of his life. He was already trying to balance performing and family life, and this made it more difficult. The pain prevented him from picking up his newborn daughter. He says “it was a scary place to be in,” but thankfully his wife was very understanding. He realizes that he’s been lucky in that respect, as it’s too often not the case.

Dan says that learning to balance his work and family life against living with chronic pain has been a “learning process” but he’s thankful for all of the support he’s had along the way.

@DanReynolds reminds us that it's a learning process to balance work and family with chronic illness. It takes effort, but it can be done.
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As a professional musician, Dan has had to perform through the pain. He said that he’s performed through probably 10% of his shows despite some sort of flare, whether AS pain or UC stomach issues. This often left him performing while stiffly holding onto the mike stand, to avoid the additional pain that movement would cause.

I asked Dan how he deals with guilt surrounding his chronic illnesses. He replied that he’s experienced a lot of guilt regarding his interactions with others. Chronic pain often affects his mood, causing mood swings that lead to him lashing out at those he loves most. “You want to be happy but you’re in so much pain that you just can’t.” Dan reminds us that you have to take care of yourself first. “The best thing you can do to love those around you through this, is take care of yourself, so that you can reduce the pain and then be able to love them and take care of them.”

Dan Reynolds opens up about the guilt associated with living with chronic illness and reminds us that the best thing you can do to love those around you, is take care of yourself.
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Getting the pain under control

Thankfully, Dan has learned what is needed to control his symptoms. Dan shared what it took to make that happen. “You’ve got to reach the low where you are willing to do anything to feel better.” He found that “moderation is key. I still do all the things I want to do, and eat what I want to, but I do it in moderation. If I am less stringent in one area, I need to make it up in another area.”

For Dan, controlling his symptoms means addressing three primary areas – diet, exercise, and treatment. He worked with his rheumatologist to develop a plan that has made all the difference. He says if one of those treatment areas falls out of balance, he has to make up for it in another area. He expressed that for him, the two most important things he does to control his symptoms are daily yoga and a diet that avoids sugars, alcohol, and inflammatory foods.

Dan reminds us that we are all unique and what works for him may not be the answer for you. “Just because cutting certain foods worked for me, I’m not going to say that everyone else needs to do the exact same thing. It’s trial and error. Go see a rheumatologist as they will work with you find the treatment that will work for you.”

There is hope

Above all else, Dan reminds us that we are not alone and that there is hope; “there are millions of others who understand and empathize.” Dan’s advice is to look for support groups and seek out a good rheumatologist who can help you form a personal treatment plan. Finally, he says “be willing to take action and do whatever is necessary to fight, rather than give in or give up. Your life is worth the discipline.

Be willing to take action and do whatever is necessary to fight, rather than give in or give up. Your life is worth the discipline.
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Talking with Dan reinforced my belief that he is no different than we are. His struggles just occur on a larger stage. I found Dan to be extremely authentic and open. Much of what he shared aligned so closely to my own story and experience that I felt that in many ways his story is my story. His story is all of our stories.

Be sure to check out Dan’s Monster Pain in the AS playlist on Spotify. I found it to be a really encouraging listen.

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The post How musician Dan Reynolds deals with a Monster Pain in the AS appeared first on Counting My Spoons.

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6 Tips for Surviving Work During a Fibro Flare

6 Tips for Surviving a Fibromyalgia Flare While Working

by Suzanne Kopecki of FibroMomBlog.com

Wait! Are you telling me that you have Fibromyalgia and you work?  What do you do when you are in a flare? I have heard this many times when people find out I am working and chronically ill. Fibromyalgia can be so unpredictable, literally from minute to minute. I have found that if I don’t juggle correctly, I could end up hurting too much or too exhausted to finish my day properly.

Since there are over 10 million people with Fibromyalgia, I think it is safe to say that many of us have to endure our illness and work a full-time job. This illness can be so different for everyone that has it. Add in some co-morbid conditions and you have your own recipe of hell that is all your own.

It has been my experience by watching others, that getting federal disability for fibromyalgia is not an easy task; in fact it can be a long, painful road. So, let’s talk about how we can get through our work day, especially when we are in flare.

  1. Restful Sleep

The number one important tool you need, especially while in a flare is sleep. I know, I know. You are already saying but I have x, y, and z that prevent me from sleeping especially restfully. I totally get that restful sleep might not be an option. So, I was once told that even if you cannot sleep, lying down and resting helps your body. Granted, it isn’t sleep, but it is something.

The key here is a good night time routine. I don’t know about you, but when I’m in a flare keeping my routines up is the hardest part for me. That is why I do most of my routine as soon as I walk in the door. It may sound weird, but if I’m in a flare I’m probably going to bed soon after I get home anyway.

  1. Exercise

I admit, I need to work on exercise. So, you are thinking, “I can’t exercise, I’m in a flare. Duh!” Well, I argue that there are ways you can. I set an alarm on my phone and stand up and stretch once an hour, more on flare days. This is hard and but important to manage the pain. Maybe, you can’t go for a walk or do your regular exercise routine right now and that is ok. But, you can alter it and still get some type of movement even just sitting at your office chair.

  1. Nutrition

When I’m in a flare, I eat less. I have absolutely no energy to make myself something to eat. So, basically if it isn’t served to me, it isn’t happening. Now, sometimes you can feel a flare coming, sometimes it hits you out of nowhere. My advice is plan, plan, plan and plan some more. Enlist helpers in your house if you have them. What I am saying is prep your food! Have healthy food ready to go so it will take little effort for you to take to work with you. Unless, you have a personal chef, in which case I am jealous.

  1. Stress

It is so hard to limit stress, I get it! However, when you are in a flare it is so important not to add more on your plate. If you have a flexible job, see if you can come in late or leave early. Some people feel comfortable telling their boss about their condition. If you fall into this category, you can let them know you are coming to work, but tell them what you are dealing with.

I have found that if I allow stress in while I am in flare, it last longer and it is more intense. Seriously, I spent so many months working while in the mother of all flares that I ended up having to take a medical leave for 5 months. Stress is no joke and does not play well with fibromyalgia.

  1. Meditation

If you haven’t started to meditate yet, you really should start. Connecting with yourself is a very important aspect of healing. Now, if you are at work and the pain is unbearable and you feel like you are going to fall over from exhaustion (true story) quick meditation can help.

A quick meditation can be a minute of two. You just close your eyes, focus on your breath and breathe in deeply and out. Every time you breathe out picture the pain going with the breath. Every time you breathe in picture peace, wellness whatever you need at the moment.  You can take this further and do this exercise for longer on a break or your lunch time. Trust me, this will give you the edge you need to stick out your day!

  1. Support

Everyone needs support, especially a fibromyalgia warrior. I get my support from social media and my family. I cannot tell you how many times I text my husband and say, “I can’t do this.” Or “I don’t know how I’m going to get through today.” He texts me back, “Babe, you got this.” And “Just do what you can, and take it easy today.” Or, my favorite, “I know this hard, but you are a soldier!” These are pure gold when you are at that last mile and want to collapse.

There is no easy answer here. I hope these help you like they help me. Sadly, there are too many of us fibro warriors out there now and we have bills to pay. It is possible to work through a flare, but please remember to listen to your body. You know when it is time to NOT work through a flare.

If you are working, you have resources. You know to get plenty of sleep, eat healthy, exercise, limit your stress, use meditation and find support from someone. There is no right or wrong here, these are just my ideas and the way I handle my flare. Tell us how you handle your flare while at work.

About the Author:

Suzanne Kopecki is the owner/creator of FibroMomBlog. Her passion is to help others, raise awareness for invisible illness and construct change in the healthcare system. In her free time, she can be found working on her psychology BA and raising up as many Fibromyalgia Warriors as possible.

You can read Suzanne’s Fibro Warrior Interview here.

Reach out to her at:

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What it means to Let Go

I often struggle with letting go. Letting go of things, letting go of feelings, letting go of attachments. This past year I’ve let go of a lot of physical things, as I’ve worked to minimize my possessions. But, in other areas I’ve not been so good at letting go.

The last few weeks I’ve felt stuck and overwhelmed. I’m struggling to stay motivated towards my usual tasks (writing, blogging, work) as other tasks (getting my house ready to sell) have taken precedence.

Getting sick and being unable to really do anything for a month didn’t help as it left me feeling even more behind and as if I would never really get caught up on all the things.

When I returned, I took a few actions that I’ve learned are vital when I’m feeling overwhelmed or like I will never catch up.

3 Things I do When I’m feeling Overwhelmed

 

I Clear my list: I shifted my to do list, deleting anything that wasn’t necessary, or shoving it off weeks or months to give myself time to get caught up on the highest priority items.

This actually worked really well. When I first began feeling better I had a ton of client work on my plate. When I first got sick I had several projects I was in various stages of with my blog, my house, and other work.

Coming back to half-completed tasks, plus a list of new projects was just too overwhelming. I had to choose what I would focus on and what would take priority. I looked at what was most urgent and focused on that first to get it off my plate. 

Here I sit, over a month later and items are still getting shifted forward on my to do list, but that’s OK. I’m getting caught up, and I’ve managed to get a couple of major projects out of the way.

I Say No: Even before I got sick, we were running behind on getting my house ready to sell. My original goal had been to have it on the market by the first of Feb, then that became the first of March, and now it’s the middle of May and it will finally be on the market later this week.

Getting sick helped me take a new look at all the things I’d been planning to do before putting it on the market and ask what was really necessary. In the end I had to say no to doing a few things. This took two forms, the first was just deciding that certain things weren’t getting done at all. The second was saying no to doing certain things myself and asking for more help. 

I Focus on one thing at a time: After a month off, my to do list had grown too large. Instead of trying to do all the things, I have to focus on one thing at a time. When that one item is done, IF I feel I can do more that day I’ll start another tasks. But, having a to do list with several items on each day just makes me feel more overwhelmed, and I don’t need that.

I also have to remind myself that overwhelm is only a feeling. This too shall pass. I’ve been trying to meditate more to help overcome the feelings of anxiety that overwhelm can create. 

For me, what often happens is that I begin feeling overwhelmed, that turns into anxiety, and then I just stop. I’m so overwhelmed and anxious that I really don’t know what to do, so I do nothing. This makes it even harder to get caught up.

However, if I stop, take the time to re-evaluate what’s in front of me, and of me and focus on just one item at a time, I can keep moving forward and not get stuck. In the end, it doesn’t matter how fast I get things done. As long as I’m moving in the right direction, I will reach my goals.

I may not be able to get caught up, or get everything done, but I can keep moving forward and work on accomplishing what I can.

I can’t get down on myself about what I’m not doing but rather focus on what I am doing.

Sometimes overwhelm is because I just have too much to do, sometimes it’s because I am working through something in my head and have decisions to make on what I want to do moving forward.

Sometimes, it’s because I’m too attached to a specific outcome, and I struggle to move forward out of fear of not achieving that outcome. 

When I began the process of putting my house on the market, I had a very specific timeline, and a very specific price in mind. I didn’t realize how attached I was to those things until this last month. 

I feel like that month of illness, of being unable to do anything was a good thing in a way. It forced me to slow down and to let go. I had to let go because I really couldn’t do anything else. My “deadlines” came and past. I went over a month without posting a single blog post (that was a first for me).

Most importantly, I think, was that I finally was able to let go of the outcome where my house is concerned. It hit me that I’d been very attached to a specific price on my house, that I’d wrapped myself up in this idea that I had to get that price. I’ve realized now, that that’s not realistic.

Moving on and moving forward are what is important to me, which means I do need to sell the house. But, I don’t need that specific timeline or specific price I’d attached myself to. 

No longer being attached to these outcomes means that I won’t be disappointed when/if they don’t happen. I’ll just be ready and able to move on to the next thing.

No longer being attached to the outcome is what letting go really means.

No longer being attached to the outcome is what letting go really means.
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Update (May 20,2019): I wrote this post last week, before my house was officially listed. My house went in the MLS on Friday. The reception was good, but I did not expect what followed. By the end of the day Saturday we had one offer in hand and two more on the way. By the time I met with my Realtor on Sunday we had 5 offers, and all of them were for more than I was asking. 

Sometimes, when you let go of an outcome, you get something even better.

Sometimes, when you let go of an outcome, you get something even better.
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What outcomes do you find yourself attached to? Are they creating stress in your life? Is it time to let go?

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Living With Chronic Pain in Denmark

Life in Denmark as a Chronic Pain Patient

by Erik Hamre

As chronic patients, we see sides of society that others don’t. We get to become intimate with the quirks of the healthcare system, we learn to make money stretch as far as it has to. Sometimes, maybe often, we get frustrated with red tape and less than understanding doctors, neighbors and friends. We’re left to wonder: Is this the best our society has to offer? They say the grass is always greener on the other side, but does that really hold up?

I’m a danish citizen living in Denmark and in this guest post, I’d like to share with you what life as a chronic pain patient is like here. You tell me then, if the grass is actually greener or if you have it pretty good already.

Universal Basic Income (UBI) is essential

Some of my American friends are really excited about a Democratic presidential candidate from California, Mr. Andrew Yang. He has made waves by his desire to implement Universal Basic Income (UBI). Socialist? Crazy? Best idea ever? I tell my American friends that we already have a UBI of sorts in Denmark. Let me explain.

These last three years, I’ve been receiving $1,500/month in economic assistance from the government. A net sum aptly named “kontanthjælp,” which literally translates to “cash help.” This “cash help” is available to all Danes who, for whatever reason, do not have a means of providing for themselves. There are strings attached though, courses to attend, unpaid work one must do, and the like. That said, people who are sick are generally exempt.

The Danish Constitution has a paragraph declaring that the state has a responsibility to provide for those unable to provide for themselves. This paragraph has held many different meanings throughout the years, from poorhouses to the current installment. The current “kontanthjælp” is a guaranteed sum of money (with contractual obligations) to be paid every month. It’s a literal lifesaver.

For those gainfully employed in Denmark, a better option than kontanthjælp is government-subsidized unemployment insurance. You pay around $150 every month towards premiums, and in return, you get insured for up to 2 years of unemployment (or sick leave). Payments during this time are up to $3,000 a month. This part-private, part-public system of unemployment is rather unique and has allowed for a very flexible job market. No one has to fear losing their home if they lose their job—at least not for 2 years.

Through my struggle with illness and chronic pain, I consider myself lucky to live in a country where I can always count on this monthly payment. I cannot imagine the horror of having to deal with a debilitating chronic illness without this safeguard.

When the healthcare system passes the buck

Danish healthcare is a “socialized” system, where everyone pays into the system through taxes and treatment is provided free of cost. Everyone is guaranteed treatment at the same hospitals, regardless of their economic situation. While it’s absolutely a great thing, there’s always a flip side to the same coin.

On that other side, the system creates bureaucracy and confusion with long waits to see specialists.

For example, when I began having pain in my neck and back, I was simultaneously sent to a neurological and rheumatology department. These two departments were at two different hospitals, and each appointment came with more than a month long wait. After the first appointment, I was rescheduled for tests like an MR scan, which also had over a month-long wait time. When the results were in—yep, you guessed it—one more to wait for the actual doctor.

It’s exhausting!

Simple introductory diagnostics may take several months while doctors at one hospital wait for results from another. This is probably my biggest complaint as a chronic pain patient in Denmark. The health care system is just not set up to handle people with complex illness. If you have something clearly defined, such as cancer, the system is quick and efficient. If you have something complicated, well, be prepared for months and years of frustration.

Losing identity and respect in a working culture

If I know one thing about Americans, it’s that you work a lot, right? Most Danes turn pale when they hear how little vacation time you Americans have. We’re all about work-life balance over here–emphasis on work.

Denmark is a country which places a great deal of importance on work. While we’re not at the level of the German or Japanese, we do value work very highly. Work carries its own reward here. Some claim it’s because of that mythical “protestant work ethic.” Maybe it’s a remnant of “early to bed, early to rise” farmer culture. Until recently, we used to be a primarily agricultural country.

Work is the center of Danish life. Socializing as an adult is frequently done through work, and people generally place a great deal of identity in their job description.

This also means that you feel quite left out without a job here. This isn’t the Mediterranean or even France, where you find people lounging about casually at all times. No, you get up, go to work, and socialize on the weekends. Denmark doesn’t have strong local communities either, no churches with large congregations. You join a social club according to your hobbies and interests here. Danish socializing is very activity based, which is of course a problem when pain and injury holds you back.

What’s it like where you live?

What's being a chronic pain patient like where you live? Do think it would be better if you lived in a different country?
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I hope you enjoyed reading my experience of living with chronic pain in Denmark. I’m often jealous of Americans and your elite health care system, but on the other hand, I couldn’t live with as much uncertainty as some Americans do. What do you think? Do you think you have it better or worse as a chronic pain patient?

About the author:

Eric is a danish writer and editor with a chronic pain condition. He has written for several danish newspapers and is currently contributing to a danish magazine, Sove.nu, on how to sleep better with chronic pain.

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Review: Vital Plan Select CBD oil products

New CBD products are popping up everywhere, and it’s a welcome sight for those of us with chronic pain, sleep issues, anxiety, and many other ailments. CBD is one of the two key parts of the marijuana plant, but is thanks to a recent change in the laws and regulations around the hemp plant, hemp is the primary source of CBD oil in the USA.

Recently, Vital Plan has gotten on board the CBD-bandwagon and introduced their line of CBD products – Vital Plan Select. If you’ve been around here for a while then you know I’m a bit of fan of both Vital Plan and the man behind the plan, Dr. Bill Rawls. I used the Vital Plan Restore product for over a year and found marked improvement to my fatigue levels from doing so.

Dr. Rawls isn’t just a doctor, he’s a patient, and he’s the first line of testing for all of his products. Dr. Rawls has suffered from the same issues we suffer from – chronic pain and fatigue, in the form of Lyme/Fibromyalgia/CFS/ME. He asserts that they are all basically the same and caused by a handful of viruses and bacteria. He covers all of this in his books, Suffered Long Enough, and Unlocking Lyme – both of which are worth reading.

After years of struggling with his symptoms, he decided to use his background in medicine to try to find something that could help him. In doing so, he created the Vital Plan Restore kit. And, now he’s launched a line of CBD products that are just as excellent as his other products.

Dr. Rawls was kind enough to gift me a bottle of his CBD tincture and a tube of his CBD-rich muscle and joint rub to try so that I could decide for myself if it was something worth telling you about. 

I’ve tried enough hemp oil cbd tinctures at this point that I can confirm without a doubt that they are not all created equal. Even when comparing products with the same amounts of cbd oil per dose, the differences are often night and day. For me, that means they either work or they don’t. The good ones just work.

It’s clear that Dr. Rawls gets that, even in his short letter he included with my order. Dr. Rawls uses only full-spectrum organically-grown CBD oil from hemp. 

If there’s a lower amount of CBD per dose I may need to adjust the dosage, I get that. However, if all things are equal and/or I’ve adjusted the dose and I’m not seeing the same results I’m used to, there’s a problem.

The Vital Plan select CBD-oil comes in a 600mg bottle. Keep in mind that this means that there’s 600mg in the entire bottle, you divide that into doses (the bottles come with a handy dropper to allow you to measure the dosage) to determine how much you are getting in a single dose.

I’m used to taking a full dropper from a 1000mg bottle, so I adjusted and took not quite two full droppers of the Vital Plan Select tincture.  All I can say is it worked. I fell asleep easily each night I used it.

The big surprise for me was with the Vital Plan Select Muscle & Joint Rub. I’ve used a CBD-based muscle rub for several years, and the one thing I’ve wished is that it wasn’t such a pain to apply. Dr. Rawls really got this right by creating it in a stick. It’s similar to a deodorant stick and just as easy to apply.

While other muscle rubs have worked well I’ve found that liberally applying them to large areas can be a struggle. You have go dig into the tin of salve and try to scoop it out then try to rub it in, and it often leaves me with a greasy mess.

But, application aside, what really matters is how well it works. I tried it first after a hard day painting my house. I was sore and tight and just needed things to relax. This did the trick.

However, when I really saw just how well it worked was just this past week. I’ve been struggling with a new headache flare that’s had everything feeling tight. After another day of this I came home from the chiropractor and liberally applied this muscle rub.

Within an hour I noticed I was feeling better than I had in a couple of weeks. I actually felt GOOD, and I honestly hadn’t had a day where I could really say that in a while.

I really can’t say anything bad about these products and would easily recommend the full line of Vital Plan Select CBD products (as well as all the Vital Plan products).

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4 Things I Need to Remember to Help Me Get Through Bad Days

While I’ve felt better during the last couple of years than I have at any point since I became ill, I still have bad days. Lately, I’ve been having more of them and I know why. I’ve been pushing myself harder and doing a lot more than I really should. As a result I have to keep reminding myself that these bad days come with a reason, and that they are JUST bad days, not the start of a bad week or month (or worse).

I’ve spent my weekends for the last two months working on my house- sanding, scraping, painting, tiling. I’ve even even done a little plumbing work. I’m actually really proud of all that I’ve accomplished (not without help). 

However, every weekend I spend working I’m reminded of my limitations. Power tools are fun, but they wreck havoc on my nerves and just an hour or two will leave me feeling it for a day or two. Thanks to Oska Pulse I can use my arms and shoulders to actually paint walls, but more than a few hours of that and I’m wiped out for several days. 

Each week I’ve made little adjustments to how I work. Saying no to specific jobs that I quickly realize will leave me hurting worse – like scraping and painting ceilings. And, coming to the realization that working two days in a row is a terrible idea (even though weekends are when I have the most time and available help). 

Then last week two things happened that left me worried that I’d really done it… that I’d sent myself backwards to a point of no return. A stressful call sent me into a migraine to the level I haven’t had in a year. And, lack of regular walking caused a return of sciatica pain in my hip. 

I’ve realized the last year or so just how much stress has played into my pain (and fatigue) levels. Since my divorce my stress levels have been so much lower. As a result, I’ve only had two major migraines. Just two years ago I was living in a chronic migraine. 

Both of those major migraines were (very obviously) brought on by stress. Even knowing what brought it on, when I woke up on the second day still feeling that migraine, it scared me. I was so worried that it was the start of another chronic migraine. 

It took a lot to convince myself that I shouldn’t go there (yet) and that the migraine would go away. However, in doing so, I realized just how easily that stress and worry could have compounded causing the very thing I was afraid of.

The same thing happened with the hip pain. I’ve dealt with sciatica pain for twenty years. After my second major bout with it I learned that the best thing I can do to avoid it (and to get it to go away when it does show up) is to walk. I’ve learned that typically just that it shows up at all is a sign that I’m not walking enough. 

Since I moved I don’t have my treadmill and while I’ve been exercising, I haven’t been doing so regularly – in large part because I keep wiping myself out every weekend to the point that I barely feel like moving for several days. 

Again, when that pain arrived (and it arrived in a big way), my fear came with it. I remembered what it was like the last time it was this bad. I remembered how long it lasted and how much it hurt to do anything. Thankfully, I also remembered what helps it.

As I’ve dealt with these reminders that last couple of weeks, I’ve had to spend a lot of time reminding myself that these are just bad days. That they are not signs of things to come.  There were four basic things I needed to do to get me through this. 

Four things to remember when bad days strike

1 . Rest when necessary

While it’s not possible for me to “rest up” and save my energy for major endeavors. I have found that proper rest after those endeavors greatly reduces my down time. Unfortunately, getting that rest isn’t always possible. 

I’ve found that after a day of working really hard on my house I will be wiped that night and through the next day. If I can take the next day off and completely rest, I can usually recover enough to be functional the following day.

Completely resting means sleeping in as long as my body feels it needs to. Then, when I do get up, it means allowing my mind and body to continue resting. I avoid working or getting too engaged in anything on those days – usually chilling out on the sofa watching TV or playing a video game.

However, sometimes life doesn’t work that way. I’ve had a few weekends where I’ve either ended up working on the house two days in a row (really bad idea), or one weekend where I worked on the house Sunday only to have to do a 4-hour round trip to a doctor appointment the next day. In both of those cases I ended up wiped out and worthless for most of that week.

My takeaway: If I’ve got something that will be a major energy expenditure, I need to make sure I can follow that with a solid day of rest to recuperate enough to function.

2 . Take action as appropriate

In addition to rest, there are certain actions I need to do to help myself avoid bad days turning into bad weeks (or worse). Primarily, I need to remember to exercise regularly, take my meds, and hydrate properly. 

Exercising regularly is the hardest thing when I’m feeling fatigued. But, there are activities I can do even for a few minutes on the bad days. A few minutes of stretching or tai chi can go a long way to getting my circulation moving properly and avoiding feeling sore.

Remembering to take all of my meds and supplements is also important. I’ve found that CBD oil has been the most important thing for helping me sleep. Even when I feel dead tired from so much work, sleep often won’t come. However, for some reason, CBD oil allows me to fall asleep so much easier and sleep well through the night. 

Hydration is paramount. I find that often with massive fatigue I’m also seriously dehydrated. This is especially true following work days (when I’m really bad about not drinking enough water). So, I play catch-up. I’ve been using Ultima Replenisher the last few months and have found it does a great job of helping me get re-hydrated faster than just drinking water.

I can feel my energy improve as my hydration improves throughout the day. With water alone it would usually take about 2 gallons of water for me to start feeling better. With a hydration supplement I can usually cut that in half.

With the sciatica pain I know what causes it (not walking enough) and I know how to fix it (walk more). So, that’s what I did. I spent an entire day walking (it actually kind of helps that sitting hurts but walking doesn’t). It helped. The key is to continue to walk more. 

My takeaway: Focus on doing ONLY what you need to do to feel better.

3 . Replace negative thoughts with positive ones

It’s so easy to begin ruminating on bad days. To let myself go into a tailspin of worry that my good days are over and that I’m starting into a flare that won’t go away. I have to make an effort to remind myself that that is not the case.

I have to focus on the fact that I’ve had more good days than bad in the last 6 years and that that will continue. 

When the negative thoughts pop up I have to purposefully replace them with positive thoughts. When my mind tries to tell me that this migraine is the return of chronic migraines, I have to make the effort to tell myself that I don’t know that. That it is possible to just have a solitary bad migraine without having chronic migraines (I’ve had hundreds of migraines in my life). 

When the hip pain popped up I had to remind myself that I know exactly how to make the pain go away (and I know exactly what to do to avoid it). Then I had to take positive action to help it. It would have been so easy to just curl up in a ball in pain (I wanted to), but I knew that wouldn’t help me feel better. 

My takeaway: I can let myself go down a negative thought trail, but that will only make me feel worse. If I can focus on the positive outcomes, it reduces stress and helps me take appropriate action.

I can let myself go down a negative thought trail, but that will only make me feel worse. If I can focus on the positive outcomes, it reduces stress and helps me take appropriate action.
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4 . Remember that I’ve gotten through this before and I will again

When it comes to chronic pain, we’ve all dealt with more it than we should. The key is to look back at all those days we’ve survived and remind ourselves that if we can do that we can get through another one.

Years ago I had a personal trainer. He would push us pretty hard (this was before I got sick). His catchphrase was “what’s one more” (one more rep, one more whatever). That if we’ve already done X number, one more isn’t that big of a deal.

After all these years, that has stuck in my head and that’s what I think to myself. “I’ve made it through so many bad days, what’s one more?” 

My takeaway: If I can just take it one bad day at a time I can get through them all. I just can’t allow myself to get focused on next week or next month or what if. Focus on today. I can get through today. 

If I can just take it one bad day at a time I can get through them all. I just can't allow myself to get focused on next week or next month or what if. Focus on today. I can get through today. 
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So, what do you do to get through the bad days? How do you remind yourself that it’s only temporary? Share your thoughts in the comments below.

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Overlap Between Intercranial Hypertension and Fibromyalgia

If you’re a regular reader here you may have noticed the lack of updates. The last two months have been my longest break from posting since I began posting regularly. So, what happened? I’m still not sure, but I can tell you it started with some severe exertion headaches that were definitely not migraines. And, it ended with more of the usual – doctors having no idea what’s going on and dismissing me.

This year has been a busy one. I’d been spending the weekends overworking myself, trying to get my house ready to sell. I was later reminded by my TMJ specialist that I was doing things I definitely shouldn’t have been attempting (including overhead scraping and painting) with TMJ. I typically found myself wiped out on Mondays following these weekends, but I expected it because I knew I was doing a lot. So, when just a little exercise left me fatigued, I chalked it up to still recovering.

However, the next day when in the middle of sex I got hit with the most massive splitting headache, I had to question if something else was going on. It felt like the most extreme ice cream headache but on the top of my head and lasted for a couple of hours. This had never happened before. But, after resting it eventually died down and I continued with my day.

Then it happened again, and instead of just going away I was left with a feeling of massive pressure in my head. It felt a bit like massive sinus pressure but without the sinus pain. Additionally, that splitting headache would return anytime I exerted myself (bending over, straining in the bathroom, etc). So, I called the doctor.

My general practitioner was able to get me in pretty quickly, scheduling me before my neurologists office even called me back. They ordered up an MRI (and when my neuro called back they added in an MRA). Those tests showed no abnormalities. This was a good thing, as that ruled out the most awful potentials (stroke, aneurysm).

I was now a couple of weeks into this massive pressure, the splitting head pain continued with exertion (so I avoided exertion as much as possible), a constant feeling of hearing a wooshing in my head, fatigue, visual issues, nausea, and feeling light-headed. I finally got in to see my neurologist and his thoughts veered in the direction my research had lead me (so nice when those align) – Idiopathic Intercranial Hypertension (IIH).

What is Idiopathic Intercranial Hypertension?

Idiopathic Intercranial Hypertension (IIH) is high fluid pressure in your skull. The fluid in question is cerebral spinal fluid (CSF). IIH is primary, idiopathic means they don’t know what causes it. Alternatively, secondary intercranial hypertension has a known cause (medication, disease, malformation in the brain). These can be easily ruled out, and in my case had been.

Primary symptoms of IIH is the unbearable head pain/pressure (often included exertion headaches), visual disturbances, nausea, vomiting, light-headedness. Additional symptoms may include hearing a wooshing in your head, vision changes with movement, stiff neck, pain behind the eyes, exercise intolerance, and memory/concentration issues. If not treated, IIH can cause blindness as the pressure affects the optic nerves.

Diagnosing IIH requires a lumbar puncture to checked the pressure of your cerebral spinal fluid. Lumbar punctures are typically performed by a radiologist in an outpatient setting. You’re brought into a procedure room and they have you lie on either your stomach or your side and insert a pretty large needle into your spine to withdraw some of the cerebral spinal fluid. They send the fluid off for various tests but check your pressure during the puncture.

Following the test you are instructed to lay flat as much as possible for the next 24 hours. Moving around or sitting up too much can cause a massive low pressure headache. They also suggest drinking caffeine to help rebuild the pressure (as the removal of some CSF will reduce your CSF pressure). Of course, if you have high pressure you might not want to rebuild that pressure.

Is there a connection between IIH and fibromyalgia?

During my attempts to figure out what was going on with me, I attempted to research IIH a bit and stumbled upon a recent research article that hypothesized high CSF pressure as a potential link between IIH, fibromyalgia, and CSF/ME. 

They pointed out the many overlapping symptoms of fibromyalgia, CSF/ME, and IIH, including neck and back pain (often radiating into the arms and legs), numbness/tingling, headaches, fatigue, and cognitive impairment.

The researchers point out several studies indicating that these symptoms are caused by CSF pressure on the nerve roots, compressing the nerves. Their suggestion is that slightly elevated CSF may be expressed as fibromyalgia. 

This is strictly a hypothesis argument based on overlapping symptoms. The tables examining the overlap of symptoms are interesting and worth a look.

Could high CSF pressure be a factor in #fibromyalgia ? #IIH
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But, where does this leave me?

I left the lumbar puncture with mixed signals. The radiologist told me that my pressure was actually a bit high. Great! That’s the answer. However, the number he gave me (18) was lower than what is generally considered high (20-25). I was confused… was he using a different measurement system? I had no idea so I had to just wait until I heard from my neurologist.

In the meantime, I spent the next 24 hours on my back… and that 24 turned into about 4 days when after I finally started trying to sit up I’d encounter a new massive headache.  This happens sometimes and while it often resolves on its own, it can require a blood patch to correct. Crap. Of course, my neurologist was out of town!

By the time my neurologist finally returned that new headache had cleared up and so had the pressure I’d experienced prior to the lumbar puncture. Hmmm… that would seem to indicate that the amount of fluid/pressure that was removed was enough to reduce the pressure to an acceptable (to my body) level… seeming to indicate that it was IIH.

Except that when my neurologist finally returned I got a call from his nurse that my CSF pressure was NOT high. His suggestion, it’s probably just a new form of migraine. Up your gabapentin and continue on.

For what it’s worth, according to the research article linking IIH and fibromyalgia, there is some debate over the cut-off value for high CSF. There’s also some discussion that CSF pressure may fluctuate, such that while it may be high one day it may be lower the next (perhaps mine was measured on a low day).

Since then I’ve had the pressure return about once a week, but overall I’ve been feeling better and better. Of course, that wasn’t the end… why would it be?

The pressure was gone, but every time I’d attempt to stand up for any length of time it felt like my heart was going nuts and I felt light-headed. Generally, I’d also noticed that my blood pressure overall had been low throughout this craziness (and my heart rate had been running high). My GP referred me to a heart specialist and so far it’s looking like all is clear there as well.

Thankfully, that also finally seems to be calming down and I’m getting back to normal levels of activity (most of the time). 

Through the first 4-6 weeks of this I really wasn’t able to work. I could barely sit up, let alone focus on the computer most days. When I finally started feeling better I had a ton of work to catch up on and I’m finally getting there.

If you’d like to be kept up on updates regarding my status be sure to join  my Facebook group and/or sign up for my

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The post Overlap Between Intercranial Hypertension and Fibromyalgia appeared first on Counting My Spoons.

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