The answers to this question are true and help to explain some of the new symptoms I’m experiencing. For example, when I stand up, I’m dizzy and have to be very careful or I walk into walls or furniture or trip and fall down.
Everyone has been blaming this on the medication I take for depression and pain but when I look them up, dizziness is not a side effect. I’ve taken some of them for years before the dizziness started.
I used to be smart. This is perhaps the worst thing that has happened.
Before FM, I started a home business, raised our two children, one of whom has significant mental health issues, never gave up on my marriage, and volunteered in our community.
Now I sit at home all day and write – until the fibro fog gets so bad that I can’t read the words on the screen. They aren’t blurry, they jump around and one line will appear on top of another, or the letters are offset enough that it feels like my brain is failing.
Around 3:00 every afternoon I can feel myself get dumber. I can’t remember words or have a conversation with someone because I can’t remember what was said three seconds ago.
So, I have learned to adjust. The best time of the day for me is 10:00 – 3:00. I use that time wisely. That is when I do my writing (and editing) or read something important that I need to understand.
I always have a notebook with me to write down ideas for my next novel, when I’m supposed to meet someone, or which book I’m reading next. This really helps because once I have it written it down, I don’t need to remember it anymore. It frees up space in my brain. I know to check my notebook frequently.
I am planning to write a book about fibromyalgia in the fall (2019). It will be filled with people’s experiences and input, and all of the things I have learned in 30 years. If you would like to fill out a short survey or be interviewed about your experience with fibromyalgia,
Let’s remember that despite all of our great science, we don’t fully understand either central sensitization or fibromyalgia. So the question is cute but unanswerable.
Central sensitization means that there is altered processing of sensation in the spinal cord and brain. Imagine you have an mp3 player and you plug it into an amplifier and then to some speakers. The mp3 player is like the tiny signals coming **constantly** from the nerves that touch all of your body. Central sensitization is when the amplifier is turned up. So various aspects of sensation are turned on high.
People with fibromyalgia have central sensitization. Their pain processing is amplified.
But central sensitization is just one kind of physiologic imbalance that shows up in fibromyalgia. People with fibromyalgia can also have a variety of other physiologic imbalances, depending on the person.
That includes immune system dysregulation, activation of inflammatory cells in the brain, dysregulation of hormones like cortisol or thyroid, irritable bowel syndrome, nutritional deficiencies, impaired energy production by mitochondria. Based on physiologic principles and some research, these imbalances are related to interlocking vicious cycles. Positive feedback loops that drive the physiology forward.
These are underlying physiologic issues that probably result in the syndrome of symptoms that we call fibromyalgia. In other words: brain fog, abdominal pain, constipation/diarrhea, painful muscles with minimal activity, fatigue, insomnia, and so on.
In my judgment, the complexity of fibromyalgia is the reason why there is so much difficulty with diagnosis and treatment. In conventional medicine, we get trained to look for one cause and one treatment for a problem.
Fibromyalgia appears to be a different thing. There are many different triggers that can start to shift physiology. And many different perpetuating factors that can permit or drive the cycle of imbalances.
In the meantime, people with fibromyalgia get to decide whether they want to be conservative and go with the conventional approach or to be more open-minded and go with an integrative approach. That means
1. A strictly conventional medicine approach, which says ‘you have central sensitization, we don’t know what causes it, do therapy and exercise and try Lyrica, Cymbalta, gabapentin, and so on. or
2. An integrative approach says, ‘there are a number of physiologic imbalances that are probably driving the symptoms. We can try the meds if you want. And for sure address mind-body variables and movement.
But also let’s help you shift your diet, heal your gastrointestinal barrier and biome, use botanicals and supplements to help sleep, balance your hormones, nourish your mitochondria, reduce stress, and so on’.
In my experience, the second one gets real results for more people.
As a Nurse Practitioner, patients presenting with chronic pain problems to the ER are problematic. During this so-called opioid epidemic, guidelines were put in place for patients seeking narcotics. Also urgent care facilities. It is a problem, and I’m not implying patients are not in pain, or simply drug seekers.
We do use Toradol. Unfortunately, patients with chronic pain problems should be receiving care from their primary care physician or pain clinic. I can’t provide a percentage, but we were inundated! I’m a chronic pain patient myself, and the ER’s were being utilized when patients ran out of opiate meds, the physicians working in them were concerned about their license and DEA #’s being sanctioned.
Some states have placed a limit on the number of days supply that can be provided. Hopefully, the new guidelines will be clarified that was written in June 2021, on how much should be dispensed. Usually, a 2–3 day supply was provided til patients could see their primary or pain, clinic doctor.
Even with the prescription drug monitoring system in place, doctors were concerned about “Big Brother” looking over their shoulder as they wrote a prescription. This period of time has been hell for chronic pain patients, and I can vouch for it. It’s out of control at this time. My supervising physician has to follow the hospital guidelines.
TRUST ME I have no problem giving a 3 day supply, back in 2016. I understand your and other patients‘ pain problems, but the ER is for emergencies, life or limb at risk, and CHRONIC problems need to be managed in other ways. I don’t want to be perceived as an uncaring, jerk, or 4 letter word, but our hands are tied. I could keep writing, but it’s a problem that hopefully will be resolved soon.
If you visit chronicillness.co, Pain, you will read the same information as I’ve written. Yes, patients are committing many unwanted things, buying meds off the internet chancing your life they may contain a fatal dose of Fentanyl. The guidelines should be published soon, to ease restrictions.
I CAN’T WAIT, as my Morphine was cut from 150mg. to 90 mg. and just because I’m in the medical field, do not receive additional amounts. My life has declined and hard to function. Was working 50 hours a week, but for almost 2 years, zero hours. Take MS Contin 30mg 1 hour before getting out of bed! I’m not alone.
May God give you strength, as he has to me, making me take my Glock out of my mouth. No joke.
This is going to sound awful. It hurts just to say it. It’s the silver bullet, though, against fibromyalgia. Exercise.
Don’t stop reading yet.
You have to start very, very slowly. 5 minutes of gentle exercise is perfect for the first week. If you have access to a warm pool, then it’s even better because you have less weight in the pool and the warm water reduces pain.
You might try physical therapy (PT) as many PT facilities have such pools. Make sure the physical therapist has experience with fibromyalgia, though. If experience isn’t available, speak with them about their approach.
If they start with “we’ll start you easy with 30 minutes and 2-pound weights,” they don’t know enough about the condition. If they say 10 minutes and 1/2 pound weights, you are in a position to explain that they expect too much. You need to start with less time and the weight of your own body.
Note that your insurance will limit visits. Find out the limit so you can spread visits out to cover the pregnancy and part of recovery.
You (and possibly your PT provider) can slowly increase your activities. Keep in mind that you don’t want to increase as fast as most people would. I used to add three minutes every three days, and I considered that an aggressive approach. Three minutes a week might be more sensible.
The mistake I always make is to stop when I’m sick. Short of influenza, I need to keep going and maintain my ability to move. We seem to have less ability to hold on to our gains than most people.
A motivator that I should point out: if your core and abdominal floor are strong and flexible, you will have an easier delivery (according to my OB all those years ago). If they are weak, you have more chance of injury and you will have a harder time with the “push” part of delivering the baby. I haven’t heard any statistics on this, but logic dictates that if you have difficulty with delivery, it might increase the chance of complications.
Exercise hurts when you have fibromyalgia. I won’t argue with that. But every incremental increase in fitness will reduce pain. The trick is to keep it slow and gentle.
Keeping a journal is the single best way to identify your triggers. So, what kinds of things should you write down? Here are some of the most common flares:
Stress: What’s going on in your life? Is everything going well in your relationship? Any problems with your kids? Is your job hectic or overwhelming? Are you moving, remodeling, or redecorating? Have you lost a loved one recently? Think about anything out of the ordinary that might be causing you stress.
Sleep: Try to make your bedroom a place for intimacy and sleep…and nothing else. Make sure you take time to wind down for at least an hour before sleep…no devices. Write down the time when you turn off the light and get ready to sleep, and when you wake up in the morning. If you can’t sleep, write that down. Estimate how much sleep you get every night.
Diet: Write down the food you eat. Don’t worry about the amounts or calories, just the types of food so that you can notice if there’s a pattern related to, for example, dairy or caffeine or gluten.
Weather: Extreme cold, humidity, and barometric pressure changes can trigger a flare, so jot down the weather. Intellicast offers a graph presentation that includes barometric pressure.
Activity: Overdoing it and, strangely, not doing enough can both trigger flares. We fibromites have difficulty properly oxygenating our muscle tissue AND flushing lactic acid from our bodies, making us feel weak and sore. Overdoing it can exacerbate this. However, not moving around enough can cause stiff, tense muscles. It’s best to pace activity with equal rest breaks…15 minutes of chores, 15 minutes of rest, etc.
Overwhelm: Fibromyalgia includes both hyperalgesia (pain amplification) and allodynia (ordinary, non-painful things are experienced as pain). Sudden, loud noises and bright lights can be painful, as can any type of sensory overload. (Personally, I can’t walk down the cleaning aisle in the store unless I’m holding my breath; the smell is overwhelming and nauseating.)
Over my 16 years with fibromyalgia, I’ve found a few non-invasive things that have helped me immensely. Some of them are a bit pricy, others are homemade, and still, others are absolutely free.
This memory foam mattress topper allows me to remain comfortable during sleep. It eliminates pressure points, yet still provides support.
The memory foam bed pillows I made from these zippered pillowcases and this loose memory foam perfectly cradle my head and neck whether I sleep on my back, side, or tummy.
This TENS unit helps relieve muscle tension and reduces my pain level. You do have to be careful to not stick the pads on or near tender points!
Make a heating pad from uncooked long grain rice. I began with a simple one made by filling, then knotting a tube sock. Then, I sewed a larger one from a pillowcase. Double-stitch stripes the length of the pillowcase about 5″ apart, creating “tunnels.” Fill each “tunnel” with a half-cup of rice, then double-stitch about 5″ up from the short end, enclosing the rice. Repeat until you reach the opening of the pillowcase and double-stitch it closed. When you want heat, toss it into the microwave for a couple minutes, shake it up, and apply. (I use a second pillowcase as a sham to keep it clean.) Be extremely careful not to overheat it, as it will burn your skin.
Practice Jacobson’s progressive relaxation technique. I find it helps to play some soft instrumental music in the background.
Try to avoid processed and fast food as much as possible. (I’ve found it helps to cook larger batches of meals that can then be split into portion sizes, vacuum-sealed, and frozen. Obviously, this doesn’t work for everything, but it’s great for things like beef stew, spaghetti sauce, soups and stews, chili, and lasagna.)
Try to avoid chemical cleansers as much as possible. (I clean with either bleach or white vinegar, watered down as necessary. It’s helped me a lot to rid my house of those multi-chemical cleansers. The smells of them alone were overwhelming.)
Having an understanding family has been wonderful. My husband and son understand when I having a bad day and pitch in without hesitation. Find those people who understand and support you. But it is also important to remain positive and do the things you can and not allow your chronic illness to define you.
Seek God through prayer, His Word and the counsel of others. Finding meaning and purpose in your life is critical for your spiritual and emotional health. In prayer, ask God to reveal His purpose for this season of your life. Invite others’ input and don’t be afraid to step out and try new things. Have you always wanted to take an art class? Write a book? Now might be the perfect time to start.
Ask important questions like, “What am I passionate about?” “What in my life can I share with others?” We sometimes abandon our “passions” for adult responsibilities. Think back to your youth and what you enjoyed doing. Rediscover your gifts and talents. Although your chronic illness may keep you from coaching your son’s soccer team, maybe you can use your photography skills to capture those winning moments. Be creative.
Take calculated risks. Rebuilding your life requires that you explore unchartered territory. Sure, it might be scary to head back to college at age 35, but why not give it a shot? While you may not succeed at everything you try, the experiences will enrich your life and give you something to talk about besides your illness.
Eliminate toxic relationships from your life. Few things are more draining than dysfunctional relationships. People who consistently blame you for their problems, criticize your choices and discount your feelings are toxic. If being in someone’s company continually drains you, it might be a sign of an unhealthy relationship. Learn to establish healthy boundaries.
Forgive those who fail you.Over time, your friends will fail you, co-workers will fail you—even your church will fail you. Forgive them and move on.
Learn to choose between “best” and “good.” Your physical and emotional resources will limit your choices. Determine who and what adds meaning to your life and invest in those relationships and activities. Not sure? Ask a friend. A fresh perspective may be just what you need.
Share your gifts and talents. Those who suffer have a lot to contribute. It is critical to look for ways to share your gifts and talents with others in your church and the community.
The best way is to accept it and moderate it in a moment-by-moment exercise. The stress of the “fight” will only make the pain worse for most with fibro. My new normal is that I am in pain every second of every day. I avoid unnecessary stressors which include movies and tv shows that are too intense.
If a sporting event causes “tension and release” that is excessive for me, I stop watching. If a food causes symptoms, I stop eating it. Part of fibro is a dysregulation of the peripheral nervous system which means that our bodies may overreact or underreact to strong inputs through our senses and emotions.
There are lots of normal things that are no longer normal for me. I have stopped fighting my new limits and have learned to accept what I can and cannot do. It is a process of grieving the loss of function and celebrating what remains.
I have learned that I must do moderate movement and small amounts of rest continuously to function. I sleep because we all must even though I know that the lack of activity through the night will increase the cramps that must be worked out in the morning.
But I slowly work and move through the cramps in order to function. I want to remain in bed because I wake up exhausted, but I know that a lack of moderate movement will mean that my cramping will get worse instead of better.
I take Lyrica, Wellbutrin, Lexapro, something for sleep, and something for a learning disability. I am consistent with my medications and have tried many to find a good mix for me. I accept that this is all that the doctors can do for me.
The “battle” is one where people expect that there is an answer to get better, and there is no one right now. We can learn the coping mechanisms that work for us and use them. I have better days now than I had before because I move moderately, stretch mildly, rest often, set boundaries with people, and have lowered my expectations for what I am able to do.
Fibromyalgia and Chronic Fatigue are survivable, and I can honestly say that I am a very happy man who deals with grieving the life that I lost every day. It is a process. I had a therapist. We saw each other a lot. I have learned how to disconnect a bit from my pain. I have learned how to engage in activities where the pleasure and payoff are more than the pain and costs. Those are different for each person.
The pain seems unbearable at first, but we can habituate to it as we repeat to our brains over and over that it is not a signal that something is going to harm or kill us. If we can learn that this pain signal does not mean that a tiger is trying to eat us or that cancer is present, then we can help the body relax and attend to it less. It is a process, and it sucks. But it is better than the alternative.
Please also understand that most doctors do not understand the disease and that opioids like Vicodin and Percocet (hydrocodone) may make fibro pain worse instead of better for many people with fibromyalgia.
I also use downward social comparison to help my mental state. Can you imagine having this disorder a thousand years ago with no medications, no heating and air, no choice in foods, and no support groups? We are even way better off than the people who had this 30 years ago and who faced humiliation and shame for their lack of activity.
Acceptance is a key survival strategy. Grieving is the pathway to acceptance. I still grieve every day about the things that I once could do and no longer can. I grieve the things that a “normal” person my age can normally do. But I come back to acceptance and a place of well-being in the midst of my pain.
For me, it was addressing the root cause of the illness: heavy metal toxicity. I had 8 dental amalgams as well as a couple of root canals. I used to get vaxxed. I ate a lot of fish. I had some imaging with contrast dyes. Nowadays everyone is exposed to multiple heavy metals.
So once I had the amalgams safely removed that was a huge step forward I have been working on getting my body’s detox pathways to work right (liver, kidneys, and gut, for example, are how we do a lot of our detox) as well as boosting natural detox such as glutathione levels.
This has helped tremendously. It is taking some major time but I’ve been being poisoned for decades so not surprised to get the garbage out and to repair the damage is taking time and effort.
I am not “cured” but the fibro is nowhere near as bad as it had been. I do think it is part of why I still have major sleep issues. I fatigue way easier than I should. I DO have chronic pain—but it is not at the level it was. I am still never pain-free but I actually have hopes of getting there.
I saw pain specialists. I had strong pain meds. Only took the edge off. The McKenzie PT has been a real help. I get an “edge off” pain with arnica gel or Penetrex.
I believe it is crucial for fibro folks to stop eating processed foods, give up fake sugars. reduce real ones, eat fermented foods, and do other things that help the gut to improve. Doing that and much more has made this a presence in my life instead of the dominating force.
Going to keep getting better; there is a lot of room for improvement but my docs have been astonished I have come this far. My PT has been great. He told me many years ago I was in the sub-sub-(about ten times)-basement and needed to NOT PUSH myself as it kept leading to flares.
I still drop in on him and he is IMPRESSED. He still offers me tweaks to the routine AND works on me because I still have serious problems but I did not give up; it’s stopped progressing (and contrary to what is claimed, I found it most certainly DID progress and got worse.
Maybe technically it was the OTHER problems that DO come from it, but it got worse and worse without a doubt.) Infections, Lyme, mold, and more can also be caused or exacerbate the condition so it’s not just heavy metals and I had a lot of those factors so had to address those topics as well.
I started with 200 mg once a day. I increased it every other day until I got relief which for me was until I reached the maximum dose of 1600 mg every 24° period (i take 400 mg every 6°). Do not take if you are on an antidepressant without consulting your doctor. Also, avoid if you use sr. John’s wort.
It does much the same thing as SAM-e so don’t take it & SAM-e together without a doctor’s ok. Either or should apply to these 2 supplements. MSM comes in a variety of strengths. The maxi has seen recommended is 1000 mg every 8 hours. No more. I started at the lowest dose once a day, & increased gradually every 48° until I got relief. Again, avoid if you’re using st. John’s wort.
The warnings on these supplements above are because, to a lesser extent, they stimulate serotonin production. It’s very mild, but things like this add up. Often, a pharmacist will know more about them than a doctor, esp. if your doctor doesn’t hold with supplements.
Another Rx pain med that slightly increases the availability of serotonin in the body is Tramadol (Ultram). If you are ever given an Rx for this, make sure the doctor is aware if you are using any or all of those 3 medicines (SAM-e, MSM, & St. John’s Wort). The issue between MSM & SAM-e is also that they work by increasing the availability of sulfur in the body, but too high levels of sulfur are as bad. It may be worse than too low levels.
I have also found Boswellia Serrata to be of some help. 600 mg twice a day is the recommended max dose. It mostly helps with joint pain, which is common in fibro patients (I should know, I’ve had it since 1984).
When we were living in Scotland, a woman who owned a natural food store recommended nettle tea for joint pain. I found it quite helpful. I was very surprised to discover few people in the US thought it was used for joint pain; many here in the US use it only for respiratory illnesses, including COPD, & had no idea it was used for joint pain. I have used it when I had a respiratory illness, & found it helpful for both.
Also, these days, you can purchase 4% lidocaine topical lotion to rub into sore joints. Make sure you don’t strip the skin of its natural oils as that’s the medium through which it absorbs into the skin.
Another thing recommended is DMSO. You’ll usually find it in the veterinary section if you want the cheapest prices, & in states that don’t allow its sale for human use, you won’t see anything but veterinary formulations in any online store. It’s a very common chemical byproduct & nontoxic.
Don’t get a 99% solution, get something diluted & in gel form…. I’ve tried both & diluted 8n gel is more effective. The main issue is it can, for those with sensitive noses, smell like raw garlic…& it can leave a taste of garlic in your mouth – even though there is no common chemical I am aware of that DMSO shares with garlic. I find garlic difficult to deal with in food.
I am very sensitive & large amounts are a huge turn-off to me. If I want to stop myself from eating too much, that’s a heck of an appetite suppressant for me. It’s also not cool with cereal at breakfast…the taste of, say, honey nut Cheerios & garlic just so does not work…but I found it helped with sore joints regardless of the taste.
I have recently found a formulation where DMSO is listed as an inert ingredient, the main ingredients being menthol & camphor…so you smell like linament on a horse or Ben-Gay on an older person. The DMSO can’t be anything but a base ingredient in some areas…areas though have yet to see any mention of its harming anyone. Anyway, it helps but doesn’t take away all the pain. Nothing does.
As for antidepressants, pain & depression share many of the same pathways in the body, so antidepressants are used, with varying degrees of success, to help with the pain.
You must realize that this war on opioids & the false blame opioids receive for the overdose crisis means that we may all, if we’re on pain medication, be forced off it…& those newly diagnosed with pain syndromes like fibromyalgia may never see an Rx for pain medication.
I’ve seen tweets by people who have had major surgeries & their post-OP pain. Options are things like one, maybe 2, acetaminophen, extra strength (500 mg a pill), every 8 hours with 400 mg of ibuprofen every 6 hours for pain unrelieved by acetaminophen.
Most hospitals are so afraid of the DEA raiding them that they won’t prescribe opioids at all for any reason whatsoever. The VA has pulled all veterans off opioids altogether, resulting in a rash of suicides due to being unable to live with severe pain from war injuries.
I include in this WWII vets who had things like shrapnel buried in areas that precluded the removal of the shrapnel because of the risk of paralysis or even death. This is a jagged foreign object in the body, always tearing at something inside, often close to the spine or a major organ.
Many have been on opioids for decades with no, only a few, increases in dosage over that extensive time frame. What a way to reduce the number of VA patients! What a way to say thanks to the men who were sent from farms & small towns all over the US to make sure the menace of the Axis countries never reached our shores!
Many of these were called back up to active duty in Korea in the early 1950s, to yet another war. What a way to perpetuate the wrongs done to our Vietnam veterans, sent by conscription to fight an unpopular war & blamed for joining an army they didn’t ask to join but were forced to join.
If you want me to write more about this I can continue…
My father drank heavily in the 1960s and both my parents smoked tobacco when I was conceived. As a child, I frequently had strep throat, bronchitis, and even pneumonia. Even at 2 two years old I remember being inside the incubator seeing the outline of my Mom and my uncle who came in to visit.
My teeth are stained from taking the antibiotic, Tetracycline as a young child. As I understand it this particular antibiotic is no longer given to young children because of the dental staining.
Additionally, I am a “DES Baby”. My Mom had 2 miscarriages before I was born. When my mother got pregnant with me, her OB doc prescribed DES in hopes that she might carry me to full term. Well, I’m here, but I only weighed 4lbs at birth. Back in the 1960s, preemie clothes were unheard of, so I wore baby doll clothes. Being small made me vulnerable.
As a child, I had unexplained aches and pains, migraines, sleep disorders, sensitivity to noise, light, and smells, emotional sensitivity, and restless legs. I thought I was different than other people. I still have these gremlins making life annoying sometimes.
My point is that I can look back and recognize symptoms I had growing up and into adulthood, middle age, and now at 53.
My theory is that one or more of those viruses I had, one or more antibiotics or cough/stomach meds or even a vaccine may have all contributed to fibromyalgia and its buddies. I think our food is filled with all kinds of processed ingredients that aren’t really natural, but rather artificial. The air we breathe is polluted and our water is something that has to be “treated” before it comes thru our faucets in our kitchen.
I believe stress in a developing child can get so extreme that it affects our nerves and the processes of our brains.
I can’t point to one single thing and know for sure if that particular thing caused my fibromyalgia but medical science still doesn’t know the cause. There are some very fundamental shared commonalities we seem to share.
