We love hearing stories about people who have gone into Fibromyalgia remission. So here at But You Look So Healthy, we have decided to seek out those people! Most doctors give little to no hope or guidance on how to feel better. Who better than to ask about feeling better than the experts themselves? No, not the doctors, but the people who have managed to figure it out themselves and live it!
Today we talk to Dawn from New York about her Fibromyalgia journey and how she stays healthy after living in pain for years.
DAWN: I had injured my back playing with my kids a few years prior, but never got a diagnosis on that until 2006 when a sedentary job caused everything to flare back up. I believe it was a cross between this injury that caused herniated discs and getting the flu that was truly brought on by fibromyalgia.
BYLSH: How long did it take for you to get diagnosed and what kind of doctor diagnosed you?
DAWN: I struggled with the pain and ended up on disability for over a year before seeing a pain management specialist. He was the only Dr, other than my chiropractor, who believed me and diagnosed me. I dealt with the pain and various medications over the years.
BYLSH: What was your rock bottom when you decided you needed to change in order to heal? What changes did you make in your life to feel better?
DAWN: In October 2019, I decided to try a keto lifestyle to lose weight. I was convinced that I would always be in pain. I can’t recall exactly in my weight loss journey when it happened, maybe a few months in, but I realized that I was no longer in pain! My inflammation was gone. I no longer needed my pain meds! I feel that by cutting out potatoes, rice, pasta, sugar, grains, and gluten, I was relieved of the inflammation, which I believe has put my fibromyalgia into remission.
BYLSH: Looking back in time is there anything you would have done differently to not get fibromyalgia?
DAWN: I am not sure of the causes of fibro, or if I could have avoided getting it, but I wholeheartedly believe that we can change our outcome with diet and exercise!
BYLSH: What do you want other fibro people to know they need to do in order to go into remission?
DAWN: I highly suggest changing your diet by ridding yourself of processed foods and eating meats, vegetables, eggs, and healthy fats.
BYLSH: For you, what is the number one thing to stay in remission, AKA your secret sauce or holy grail? It is the number one thing you have to do to stay in remission.
DAWN: I realize that we are all different in our journey but start by taking control of your diet and exercise! I will continue to eat a low-carb/keto lifestyle because this is what has worked for me! I hope that you, too, can find relief in your journey to better health!
In past posts, I’ve written about feeling ill-equipped to handle the role of spouse, the (still ongoing) process of learning that I can’t fix everything, and just being there for my loved one. Those are all key components of becoming the best you can be as a partner, spouse, relative, or friend of a loved one who suffers from a chronic illness such as Fibromyalgia.
However, some days are just tough…
tough to watch your loved one suffer a Fibro flare
tough to watch your loved one have a good Fibro day but is sick with a cold, the flu, etc.
tough to watch your loved one deal with a separate health issue unrelated to Fibro (i.e. back and/or neck problems, migraines, etc.)
If my loved one has managed to avoid a Fibro flare by doing everything “just right” I feel it is a tragedy if she gets socked with another health issue that sours an otherwise good day. THOSE ARE THE DAYS THAT REALLY FRUSTRATE ME!!
This is a time to put worry and anxiety to bed. One thing I need to remember in these instances, and I encourage you to do so as well, is that worry is essentially pointless. I am a HUGE worrier, so this is something that I struggle with on a minute-to-minute basis.
Worry is trying to control the uncontrollable. Fibromyalgia, chronic pain, and other conditions that afflict our loved ones are often, if not always, out of our control. As caregivers and helpers, we need to only tackle the things within our control that can be beneficial for our loved ones.
What are some of the things that are in our control?
Cooking (meals that are conducive to our loved one’s dietary needs, not ours; that means using ingredients that will NOT cause a flair)
Reassuring and supporting
Sacrificing (putting many things second to our loved one)
We’re all human. I know that changing our way of thinking, our way of eating, our way of living life…for the benefit of someone else…is very difficult!
No matter how hard it seems, after all, some days are just tough, we have to remember that we’re called to love one another, and the well-being of our most special lovedone(s) should be a concern that rivals none other.
Fibromyalgia fatigue feels like a constant state of weariness that diminishes your energy and mental capacity. Fatigue is the second most prominent symptom of fibromyalgia and can be even more debilitating than the pain.
The overwhelming tiredness makes our bodies feel heavy and weak. It contributes to brain fog increasing memory loss and forgetfulness.
Studies have shown that the amount of fatigue a person with fibromyalgia experiences directly impacts the amount of pain they have. Fatigue also has an impact on your emotions and is linked to depression.
The fatigue associated with fibromyalgia is similar to that of chronic fatigue syndrome (renamed “systemic exertion intolerance disease”). In fact, many people who have fibromyalgia may also have CFS/SEID as well. The Arthritis Foundation estimates that 50 to 70 percent of people with fibromyalgia also fit the criteria of chronic fatigue syndrome.
For people with fibromyalgia and/or CFS, the conditions themselves cause fatigue. Other factors such as stress, anxiety, depression, lifestyle, and medications can make the fatigue worse.
Below are a few reasons you may feel exhausted:
Sleep Disorders– Lack of good quality sleep is a big part of the problem. Sleep problems are so common in fibromyalgia that symptoms such as waking un-refreshed, fatigue, tiredness, and insomnia are included in the diagnostic criteria for FMS.
Mitochondrial Dysfunction– Fatigue is a hallmark symptom of mitochondrial dysfunction. Mitochondrial inside our cells convert nutrients and oxygen to energy. With fibromyalgia, the mitochondria of many cells in the body have been shown to be impaired. This means we do not have enough energy to power our body.
Stress– One symptom of long-term stress is fatigue. Some experts believe chronic stress is a strong contributing factor for developing fibromyalgia. Many of us with fibro know that stress will trigger a symptom flare-up very quickly. Chronic stress is also a precursor to anxiety and depression.
Anxiety or Depression– Anxiety and depression can both cause fatigue and leave you feeling drained. People suffering from depression are 4 times more likely to suffer from fatigue. People who suffer from fatigue are 3 times more likely to become depressed. People with fibromyalgia are likely to suffer from anxiety and/or depression. It all becomes a vicious cycle that can be difficult to break.
Poor Nutrition– Experts say poor nutrition is a big culprit when it comes to fatigue in general. We know there are several nutritional deficiencies involved with fibromyalgia so eating healthy and getting the proper nutrients is extremely important.
Medications– Many prescription and nonprescription medications can cause weariness and fatigue. A few examples are anti-anxiety medications, antidepressants, high blood pressure medications and statin medications for high cholesterol. The more medications you take the more likely you are to feel fatigued.
Studies published earlier this year, help explain why individuals dealing with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Fibromyalgia have a poor response to physical activity and poor energy production.
Fibromyalgia fatigue is not that easy to treat. On good days, the fatigue can be tolerable. However, on bad days ordinary activities seem virtually impossible.
Here are some tips that can help deal with fatigue:
Use Your Energy Wisely– Take breaks and pace yourself. Even if you are having a good day don’t try to do too much, it will only cause a setback. So keep your schedule simple, know your limitations and rest when you need to.
Exercise– I know the thought of exercising can be overwhelming, but the lack of exercise can make your muscles stiff and more painful, which also contributes to feeling fatigued. Start slow and pick a time of day that works best for you.
Eat Well– Eating a nutritious diet is good for your overall well-being. Avoid sugary, fried and processed food which can leave you feeling bogged down. Cooking can make me feel exhausted. On days I have more energy, I either make meals ahead or at least do some of the prep work to make it easier.
Reduce Stress – Fibromyalgia can be stressful and stress can leave you more fatigued. If you can learn to manage your stress, you will have more energy. Deep breathing, meditation, yoga and listening to music are a few stress management techniques that help me.
Prioritize Sleep– Sleep disturbances are common with fibromyalgia. The lack of quality sleep can cause fatigue and worsen fibromyalgia symptoms. Some experts believe that disordered sleep is the most important symptom to treat when you have fibromyalgia. I know that when I sleep well I feel better. When I can’t sleep I feel worse all the way around.
Talk To Your Doctor– If your medications are making you even more tired, talk with your doctor. He or she may be able to prescribe an alternative, lower your dosage, or have you try taking your medicine at a different time of day.
Energy Boosting Supplements – Four supplements that help your body produce more energy are Coenzyme Q10 (CoQ10 ), D-Ribose , Magnesium and Vitamin B . It is important to keep in mind that supplements can negatively affect certain health conditions and interact with certain medications. Please do your research and check with your doctor or pharmacist to make sure they are safe for you to take.
Fibromyalgia fatigue can be crippling. It’s physically and emotionally exhausting. On bad days, you can barely drag yourself out of bed. You feel drained. The overwhelming tiredness will not go away. You can’t concentrate, remember things or stay focused. Believe me, I know how it feels. I can’t remember the last time I felt full of energy or haven’t felt exhausted at some point in the day.
Fibromyalgia ranks among the most puzzling and common chronic pain conditions. Fibromyalgia pain moves around from one area of the body to another or it seems to be everywhere at once. We experience several different types of pain. The intensity of the pain also changes. It can be very difficult to describe fibromyalgia pain to others. We often feel misunderstood and disbelieved.
It is hard for people who do not have chronic pain to understand how it is for us to live with it. Even those closest to us can not fully understand. They cannot and do not know the painful life we experience.
It can be just as difficult to describe how your pain feels to your doctor. Many doctors use a 0-to-10 pain rating scale, which has its limitations. Each of us experiences our pain differently. One person 8 may be another person’s 4. I often feel that because I always have pain, I under-rate my pain on the pain scale.
We have to rely on our words to communicate our pain to our doctor. The better we can describe our pain, the easier it may be for our doctor to help. Your doctor needs to know not just how much the pain hurts, but how the pain hurts and how it impacts your life.
Those of us with fibromyalgia suffer from different types of pain. Some words that can help you describe the way your pain feels include:
Keeping a pain diary is a good way to track your pain over time and will help you be more specific at your doctor appointments. You can also use the American Pain foundations LOCATES memory aid. It is a good way to remember how to describe your pain. Each letter of LOCATES stands for the information you should tell your doctor:
Location of the pain and whether it travels to other body parts. Other associated symptoms such as nausea, numbness, or weakness. Character of the pain, whether it’s throbbing, sharp, dull, or burning. Aggravating and alleviating factors. What makes the pain better or worse? Timing of the pain, how long it lasts, is it constant or intermittent? Environment where the pain occurs, for example, while working or at home. Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.
If you want your pain to be taken seriously, don’t ever rate your pain at a 10! Unless you actually look as if your pain is a 10, your doctor will think you are exaggerating.
Dealing with fibromyalgia pain is a process. The more specific and detailed you can be when describing your pain, the more likely your doctor will be able to help you manage your pain.
Chronic pain not only makes us feel helpless, sometimes it makes doctors feel helpless, too.
Do you experience pain from a simple touch? Do you cringe when someone goes to give you a hug? Do these simple gestures result in excruciating pain? Skin pain is another one of those fibromyalgia symptoms that just doesn’t seem to make sense. This type of pain is called Allodynia and is usually felt as a burning sensation.
Allodynia is believed to be a hypersensitivity to stimuli that would normally not cause pain. The pain can be provoked by a light touch to the skin, pressure from clothing, showering, combing, or brushing your hair. Even a light breeze blowing across your skin can feel like agony.
Allodynia is considered to be the result of a process called central sensitization. The pain comes from a malfunction of specialized nerves, called nociceptors. These nociceptors sense information about things like temperature and painful stimuli right at the skin. For some reason, our nociceptors become chronically activated and send persistent pain signals. Any sensation felt by the skin becomes painful.
Allodynia is a fairly rare type of pain. It is only associated with a handful of conditions. These conditions include fibromyalgia, complex regional pain syndrome, neuropathy, postherpetic neuralgia (shingles), and migraine. Allodynia is also linked to the lack of restorative sleep.
Mechanical Allodynia: pain caused by movement such as your clothing brushing against your skin or the breeze from a fan or the wind blowing across your skin.
Allodynia often overlaps with hyperalgesia (abnormally heightened sensitivity to pain), which seems to be the case with fibromyalgia. So not only are we experiencing pain from stimuli that should not cause pain, the pain is amplified.
The skin pain comes from a malfunction of specialized nerves. It is also related to a lack of restorative sleep. Standard treatments for fibromyalgia can also help ease allodynia. This includes eating healthy, exercising, reducing stress, and improving your sleep.
Some people also get relief from topical pain creams. You may have to be careful about the way you dress, as well. Loose-fitting clothing made from soft natural fibers is recommended.
If your skin itches, burns, tingles or you have numbness, it could be a condition called Paresthesia. It’s also seen in Fibromyalgia and migraine patients. The sensations are usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body.
Painful skin is a new symptom for me. It seems to be triggered by temperature. It doesn’t even have to be hot. When I feel a little warm, my skin starts stinging and burning, then anything touching or moving across my skin intensifies the pain. Being exposed to the sun makes it worse.
My doctor increased my dosage of amitriptyline and said if that doesn’t help we would try gabapentin. It’s been three weeks since the dosage increase and so far it hasn’t helped. Since summer is almost over, I am wondering if the skin pain will lessen when the weather gets cooler.
There are basically two ways to deal with Fibromyalgia: accept it or resist it. We start out fighting against it. We push ourselves. We resist. Eventually, we realize resistance is only creating more suffering for ourselves.
We begin to accept things are different now. Our life has changed. Fibromyalgia is not going away. We have to look at our situation realistically. Our old life is being replaced by a new life full of limitations.
I was diagnosed with fibromyalgia over 10 years ago. At first, I could not accept that my life would have to change. I kept trying to do everything the same way I always have. Pushing and pushing myself to get things done. Working, taking care of my grandchildren, housework. I’m sure you can guess what happened -I crashed.
I spent three years barely functioning. I was taking at least 9 medications for various fibromyalgia symptoms. I couldn’t think straight. I had no energy. I lived in a daze. Couldn’t even call it living. I was existing.
Eventually, I had to accept that life had changed. I accepted fibromyalgia. I had to create a new life. One that was worth living. For the most part, I am happy with my new life. I never took time for myself before. I do now. I appreciate the little things more. I write which is something I have always wanted to do. My life is peaceful and quiet which is what I prefer.
I was sure that I had fully accepted this chronic illness. I was sure that I had stopped resisting. But, I haven’t, not completely. I have been practicing mindfulness/meditation and am becoming more aware of my pain-related thoughts and my true feelings about pain. I am noticing how they increase muscle tension, anxiety, and pain. I realized there is one symptom in particular that causes me the most stress.
Resistance creates suffering. Stress happens when your mind resists what is. The only problem in your life is your mind’s resistance to life, as it unfolds.
Fibro Fog. Instead of giving myself a break, I push myself. In doing so, I make myself feel worse. Stressed out and frustrated. Brain fog is the one symptom that scares the h*** out of me, especially memory loss. I don’t want to accept it.
Fibro fog is not something I experience, at least not at this level unless I am also fatigued. It’s been a long time since I have suffered this level of fatigue and brain fog. I have been doing so well, it’s just so frustrating to backslide. I have to keep telling myself this too shall pass. It’s just a bump in the road.
I haven’t felt well since Oct. 5th. That was the day I lost my 14-year-old poodle, Nyka. If you read my post: Chronic Illness in Pets, you might remember she had congestive heart failure. I had been preparing myself for this day for at least a year. Her bad day’s way outnumbered the good, especially in September, and I knew it wouldn’t be much longer. I was focused on taking care of her and not myself so much.
Within 2 days after Nyka passed, I was in so much pain, I was back to using my cane. But this time, instead of lying in bed, I stayed active. I had to or the grief was overwhelming. I felt lost. I didn’t realize how much time I spent taking care of Nyka. Giving her medications on time. Cooking for her. Hand-feeding her so she would eat. Taking her out frequently. Cleaning up messes, when she didn’t make it out in time.
I got the pain back under control by using my foam roller and stretching 3-4 times a day instead of my usual once or twice a day. I also cleaned every room in my house from top to bottom. Little by little, each day.
You would think the fatigue would have come from all the cleaning. But it came a few weeks later. Now, I can’t seem to shake it. Of course, it brought brain fog along for the ride. I know it is probably due to stress and grief. Another factor may be that I ran out of CoQ10. Since CoQ10 is a supplement that helps the mitochondria make energy, that may explain why I have none.
Acceptance is not submission; it is an acknowledgment of the facts of a situation. Then decide what you’re going to do about it.
– Kathleen Casey Theisen
I started taking CoQ10 again a few days ago. And I am going to rest. I am not going to expect more out of my brain than it is capable of right now. No to-do list. And I am not going to feel guilty for saying “NO”.
Well, there you have it. Brain fog is the fibromyalgia symptom I resist the most. What symptoms do you resist?
Fibromyalgia (FM) is a syndrome defined by chronic widespread pain with multiple tender points, fatigue, sleep dysfunction, and abnormal pain processing. The syndrome can have many other associated symptoms as well but those can depend on person to person. The cause of the syndrome is unknown but theories have revolved around the idea of trauma or problem with the nervous system caused by injury, virus, or essentially an automatic nervous system dysfunctional condition along with theories that speculate it is an asleep dysfunctional condition or it is autoimmune in nature. The role of immune system dysfunction had been downplayed in recent years due to the recent evidence to demonstrate the neurological components. If this new research into the immune system can be replicated it may very well be that Fibromyalgia is a neuroimmune syndrome in nature which could vastly change how it is looked at in research and treatment. In fact, the method used in the research for their test could, in fact, be used in the future diagnostically.
The researchers used several methods to study the cytokine levels of people with Fibromyalgia to healthy subjects. Cytokines are part of our immune system which are proteins that help manage our immune response. “Recent data highlight the role of the immune system in FM. Aberrant expressions of immune mediators, such as cytokines, have been linked to the pathogenesis and traits of FM. We, therefore, determined whether cytokine production by immune cells is altered in FM patients by comparing the cellular responses to mitogenic activators of stimulated blood mononuclear cells of a large number of patients with FM to those of healthy matched individuals “ Prohealth
The study was done by the blind method. There was a total of 110 Fibromyalgia subjects and 91 control subjects involved. All the FM subjects had symptoms and a diagnosis of at least one year and underwent two independent examinations to confirm they met the criteria according to the standards of the American College of Rheumatology. All FM patients were off their fibromyalgia medications two weeks prior to the study being started. Patients with comorbid conditions were excluded specifically ones with already compromised immune systems; such as autoimmune conditions. The median age of the group was 39.
They used “Plasma and peripheral blood mononuclear cells (PBMC)…. Parallel samples of PBMC were cultured overnight in medium alone or in the presence of mitogenic activators; PHA or PMA in combination with ionomycin. The cytokine concentrations of IFN-γ, IL-5, IL-6, IL-8, IL-10, MIP-1β, MCP-1, and MIP1-α in plasma as well as in cultured supernatants were determined using a multiplex immunoassay using bead array technology. ” BMC Clinical Pathology December 17, 2012
Essentially Fibromyalgia patients had substantially lower levels than the control group. Cytokine levels “of stimulated PBMC cultures of healthy control subjects were significantly increased as compared to matched non-stimulated PBMC cultures. In contrast, the concentrations of most cytokines were lower in stimulated samples from patients with FM compared to controls. The decreases in cytokine concentrations in patients’ samples ranged from 1.5-fold for MIP-1β to 10.2-fold for IL-6 in PHA challenges. In PMA challenges, we observed 1.8 to 4-fold decreases in the concentrations of cytokines in patient samples.””BMC Clinical Pathology December 17, 2012
The research done by BMC Clinical Pathology concludes “The cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM.” BMC Clinical Pathology December 17, 2012
“In the past, FM was claimed to be a rheumatologic, neurologic or psychiatric disease despite the fact that there were no objective links to any of those pathways. Our findings uncovered evidence that FM is instead an immunologic disorder. They prove that the immunologic basis of FM occurs independently of any subjective features. Hence, this illustrates the very strong clinical value of our test protocol. The fact that individual cytokines exhibited similar dynamics in patient samples reveals that the FM patients are uniform in regard to their cellular immunologic responses.” BMC Clinical Pathology December 17, 2012
Based on one study there is not enough evidence to say that Fibromyalgia is an immunologic disorder, but if more studies confirm similar findings it could mean a great deal. There has been a shift to see the syndrome as neurological and this would increase the shift towards neuroimmune. This means a great deal since it is pointing to specific immune dysfunction which could lead to specific treatments and a better overall grasp of what is going on with this syndrome. Most important is the idea that they could come up with a diagnostic tool, which the lack of has always been a problem. It could lead to people being diagnosed early and prevent misdiagnosis if there was a diagnostic tool.
Venturing out of my abode got me thinking about fickle fibromyalgia pain.
Recently I have been thinking about the variety of FM symptoms because some of them overlap with chronic migraine symptoms such that I don’t know which is the cause… such as vertigo; migraine-associated vertigo or FM-related vertigo, or the balance problems and even the sensitivity to sound and light. The thing is FM came first and migraines later and then chronic migraines so no matter how much my neuro wants to label everything chronic migraines he is actually just saying things doctors had actually labeled everything fibromyalgia before.
But my trip and any trip actually or any unexpected activity remind me of the fickle fibro pain. How it can hit like lightning in any muscle group or all muscle groups. How it can be a deep muscle ache that gets worse and worse, grinding and deep until your mobility is completely restricted, or a sharp nerve pain that arches through you or stings like cold fire or burns. The pain can be crippling and many of the incidents I remember can be so different and triggered by different things or nothing at all… so fickle.
Excluding the aches I had as a child the first sharp crippling pain came when I worked a job where I was standing for eight hours at some customer service job. I remember the pain of doing that but I was familiar with that sort of pain already and not diagnosed at the time. I believe at the time they had said I had ‘hypermobility with soft tissue pain’ so pain from standing was due to me being double–jointed. It sucked but it was familiar.
What wasn’t familiar was the fact that after enduring it for eight hours and getting home and sitting down, with profound relief, I couldn’t stand up. After a brief moment of rest and I tried to get up for supper and pain arched through my legs and they collapsed. Just gave out from the very pain itself.
It was the first time I realized if you have severe fibro pain you cannot stop and rest. There is no point to it because resting and getting up causes severe pain, sometimes causing your legs to just give out but most definitely causing a lot of difficulty in getting moving again because of intensepain… so it is better to just keep going, no matter how slow.
The next incidents of intense fickle fibromyalgiapain occurred when I was an undergraduate in university.
Because that is when my fibro because more severe due to sleep cycle changes and so forth. Also when I was officially diagnosed but not treated (I was told too young to be treated). I flared up really bad one year but there was no reason for it. I was living off-campus at the time. I was physically fit in the sense I walked to school every day. I walked my dog every day. I rollerblade and so forth. Fairly active for someone with chronic pain. I was doing what they want us to do… exercise. The flare-up nearly crippled me.
My fifteen-minute walk to school went from fifteen minutes to forty minutes and was extremely painful. It took a lot of willpower to achieve. Even when I got there it was difficult to sit at my desk, to actually sit down, and then to sit for the entire time. I just remember trying to pay attention through the pain. And that is why I remember that flare up so much because it reminds me of a migraine…. trying to think through pain and not being able to. That pain was all over pain. It hobbled me pretty good… but it was not just the legs, it was back, shoulders, neck… every damn place. And no cause. It lasted about six months and then was gone. It was in summer and wasn’t a weather thing. Just not sure what was the cause.
One thing about fibromyalgia was that I could not work during school. I wasn’t capable of it. Work took too much out of me, so during the summer was my saving up money time. But unfortunately, sometimes it took a little too much out of me anyway if I chose the wrong job. We learn that the hard way with fibro being as it is so fickle we learn what jobs we can and cannot work. I learned as a kid, and during summer jobs that standing for eight hours is extremely painful but what can you do? Service industry jobs are easy to get when you have no experience.
Next job I learned lifting things repetitively or moderate lifting is a very bad thing to do if you have fibro… I got costochondritis. But I didn’t know it. I started getting twinges of chest pains which I ignored, they got more frequent more painful than more constant. The local doc said it was stress. So I ignored it and it got worse and worse. Until when I lay down it felt like someone was squeezing the life out of me, pressure and pain. I ended up in the ER one night because it got severe one night when I went out drinking. That doc said he didn’t believe in fibromyalgia (as was common back then) and sent me away. Needless to say, this pain wasn’t going away so I made the trip home to my family doc who did a chest x-ray and told me what it was. I guess because I have fibromyalgia and maybe because I had aggravated it so much by working with the pain it lasted well into the school year. The pain receded very slowly over six months. It has never, ever been as bad as that.
When I was in graduate school and I needed to get my thesis signed by all the dudes who needed to sign off on it I had to get my copies printed then run around to find the professors to get them to sign and then get the thesis to the right place in order to meet my deadline. This campus was huge. I did a lot of running around. I can’t walk, walk, go upstairs, walk, walk, go upstairs without beginning to feel pain. It isn’t possible.
So I started getting pain in my hips, knees, and feet. I had to keep going because I needed to get it done. I started moving slower and slower and getting more and more distraught. I was running out of time but I couldn’t physically move faster. In the end, I was moving so slowly that I might as well not have been moving. I ended up in my department crying because I couldn’t get it done. A professor found me and I explained (I had not been aware I could get disability benefits on campus by the way so no one knew I had fibro) he called my missing prof and got him to come to me and then got someone to bring my thesis to the right place. I was extremely thankful. I was also stuck there for an hour before I could move again. It was embarrassing to me as well. I never wanted to admit it could actually affect me. Not like the migraines were… and the migraines are what killed my academic career.
The next incident was years later because like a good fibro girl I aimed for a desk job and settled into it. But flares for no reason happened anyway. This one just occurred and surprised me because I could not explain it. It started in my feet, in the arches. Severe arch pain in both feet. I could barely walk just shuffle around. I could not really lift my foot and every step hurt. I tried fake arches. An anti-inflammatory cream my doc gave me. Foot exercise. Nothing. It lasted a year and then just gone. Then started in my wrists, both wrists, tendinitis I guess but so painful I could not put any pressure on them, had a hard time writing with them, and had to wear a brace at night and sometimes at work. They hurt like that for about eight months and then just stopped.
So when my feel suddenly hurt when I wore those sandals I remembered that pain. Those are flares of pain. And the pain in specific spots. Pains other people get for different reasons but we get those sorts of pains for no reason they are part of our normal life. The aching muscles, and general soreness… that is every day, not a flare. Skin pain is a different kind of pain altogether. Nerve pain is also a different kind of pain. Fibromyalgia has a lot of different types of pain. Because it is fickle. It can hit when you take a fifteen-minute walk, which has happened to me, or not until you have walked for an hour. Random, completely random. And these Hellish Flares of Doom… I don’t know what causes them. Sometimes we overdo it and pay and pay and pay. Sometimes they hit for no reason and we pay and pay and pay. I don’t get it but they are way worse than any other flare we have… and we have enough of them as-is.
Pediatric Rheumatology Online Journal, 2012, states Juvenile Fibromyalgia (JFM) is correlated with 40% of children and teenagers who also have benign hypermobility (HM). In fact, in adults hypermobility is an often seen comorbid condition.
Pediatric Rheumatology, however, undertook an observational study to see if hypermobility affects the pain experience of adolescents with juvenile fibromyalgia. It must be mentioned that juvenile fibromyalgia is a relatively new area. Often the reason it took people a decade or more to be diagnosed is that early symptoms were ignored, puzzled over, and passed on leaving the patient to continually get worse and eventually get diagnosed in their twenties if they were lucky.
So there has been a great deal of progress to see people acknowledging the syndrome presents far earlier than they had initially thought in many patients. In fact, there was a study done to see what the prevalence rate was for subjects who had fibromyalgia and hypermobility.
The study carried out by the Department of Pediatrics at Louisiana State University (study) had a study group of 338 students and the prevalence of JFM was 6% and of that six percent 40% had hypermobility.
The study included one hundred and thirty-one JFM patients between the ages of 11 and 18. They completed a daily visual analog scale (VAS) pain rating for a week and did the 18 tender point colorimeter assessment as well.
The results show that 48% of the sample size of JFM subjects was found to be HM+. HM+ and HM- patients did not have any differences in their self-stated pain intensity ratings. However, those who were HM+ had significantly greater pain sensitivity, their tender point threshold was found to be lower, and they had a larger amount of those tender points contrasted to HM- subjects.
From the study, we can say that a juvenile with FM and joint hypermobility does not necessarily report more pain intensity, but that there is increased physiologic pain sensitivity. They are looking to further study the relationship between increased pain sensitivity associated with hypermobility with juvenile fibromyalgia.
From this study, we can see a high co-occurrence of juvenile fibromyalgia with hypermobility. As research into juvenile fibromyalgia is relatively new it will be interesting to see what comes of it. Fibromyalgia is often considered to have an onset in the thirties that increases in probability with age. Researchers still investigate and speculate about rapid-onset cases where someone develops FM after an accident or illness, but it is an entirely different matter if it develops with no trauma and in childhood. It would be interesting to see how many adult-onset people with FM have hypermobility and if the occurrence rate is far lower why it would be that developing FM at such a younger age comes with such a high incidence of hypermobility.
I had no idea about this but apparently, they have a class of fibromyalgia called Juvenile Fibromyalgia… so they are actually looking at children and teenagers and diagnosing them properly. Would have been nice had they done that when I was younger because I was one of those people with FM that had it at a very young age and so spent a lot of time going to the doctor for blood work and tests and no answers. Took a long time to get my diagnosis and by then it was pretty bad. So I’m glad they have finally figured that out… not everyone gets in their thirties or older and not everyone gets it after a trauma or illness… sometimes we have the syndrome and it just slowly gets worse over time. I also have hypermobility syndrome.. that I was diagnosed with early by the way. And it is one of the things that is comorbid with FM, a lot of us are hypermobile and apparently about 40% of JFMers are. I wonder if it is just those who develop it as children who are more prone to having it or if it is all around common to have this co-occur and I wonder why so many of us have this… FM is in the brain and it is all about the nervous system, whereas hypermobility is the joints and connective tissue. An interesting puzzle.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway, it is around but I’m posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the widespread pain, but our pain isn’t just muscle pain… it can be nerve types of pain as well, fatigue and insomnia. And even among symptoms, there are some far more frequently than others, but it should be said we have categories… like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. Insomnia… more than one sleeping disorder. So the list is interesting.
GENERAL __ Fatigue, made worse by physical exertion or stress __ Activity level decreased to less than 50% of pre-illness activity level __ Recurrent flu-like illness __ Sore throat __ Hoarseness __ Tender or swollen lymph nodes (glands), especially in the neck and underarms __ Shortness of breath (air hunger) with little or no exertion __ Frequent sighing __ Tremor or trembling __ Severe nasal allergies (new allergies or worsening of previous allergies) __ Cough __ Night sweats __ Low-grade fevers __ Feeling cold often __ Feeling hot often __ Cold extremities (hands and feet) __ Low body temperature (below 97.6) __ Low blood pressure (below 110/70) __ Heart palpitations __ Dryness of eyes and/or mouth __ Increased thirst __ Symptoms worsened by temperature changes __ Symptoms worsened by air travel __ Symptoms worsened by stress
PAIN __ Headache __ Tender points or trigger points __ Muscle pain __ Muscle twitching __ Muscle weakness __ Paralysis or severe weakness of an arm or leg __ Joint pain __ TMJ syndrome __ Chest pain
GENERAL NEUROLOGICAL __ Lightheadedness; feeling “spaced out” __ Inability to think clearly (“brain fog”) __ Seizures __ seizure-like episodes __ Syncope (fainting) or blackouts __ Sensation that you might faint __ Vertigo or dizziness __ Numbness or tingling sensations __ Tinnitus (ringing in one or both ears) __ Photophobia (sensitivity to light) __ Noise intolerance
EQUILIBRIUM/PERCEPTION __ Feeling spatially disoriented __ Dysequilibrium (balance difficulty) __ Staggering gait (clumsy walking; bumping into things) __ Dropping things frequently __ Difficulty judging distances (e.g. when driving; placing objects on surfaces) __ “Not quite seeing” what you are looking at
SLEEP __ Hypersomnia (excessive sleeping) __ Sleep disturbance: unrefreshing or non-restorative sleep __ Sleep disturbance: difficulty falling asleep __ Sleep disturbance: difficulty staying asleep (frequent awakenings) __ Sleep disturbance: vivid or disturbing dreams or nightmares __ Altered sleep/wake schedule (alertness/energy best late at night)
MOOD/EMOTIONS __ Depressed mood __ Suicidal thoughts __ Suicide attempts __ Feeling worthless __ Frequent crying __ Feeling helpless and/or hopeless __ Inability to enjoy previously enjoyed activities __ Increased appetite __ Decreased appetite __ Anxiety or fear when there is no obvious cause __ Panic attacks __ Irritability; overreaction __ Rage attacks: anger outbursts with little or no cause __ Abrupt, unpredictable mood swings __ Phobias (irrational fears) __ Personality changes
EYES AND VISION __ Eye pain __ Changes in visual acuity (frequent changes in inability to see well) __ Difficulty with accommodation (switching focus from one thing to another) __ Blind spots in vision
SENSITIVITIES __ Sensitivities to medications (unable to tolerate “normal” dosage) __ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays) __ Sensitivities to foods __ Alcohol intolerance __ Alteration of taste, smell, and/or hearing
OTHER __ Hair loss __ Mitral valve prolapse __ Cancer __ Dental problems __ Periodontal (gum) disease __ Aphthous ulcers (canker sores)
COGNITIVE __ Difficulty with simple calculations (e.g., balancing checkbook) __ word-finding difficulty __ Using the wrong word __ Difficulty expressing ideas in words __ Difficulty moving your mouth to speak __ Slowed speech __ Stuttering; stammering __ Impaired ability to concentrate __ Easily distracted during a task __ Difficulty paying attention __ Difficulty following a conversation when background noise is present __ Losing your train of thought in the middle of a sentence __ Difficulty putting tasks or things in proper sequence __ Losing track in the middle of a task (remembering what to do next) __ Difficulty with short-term memory __ Difficulty with long-term memory __ Forgetting how to do routine things __ Difficulty understanding what you read __ Switching left and right __ Transposition (reversal) of numbers, words, and/or letters when you speak __ Transposition (reversal) of numbers, words, and/or letters when you write __ Difficulty remembering names of objects __ Difficulty remembering the names of people __ Difficulty recognizing faces __ Difficulty following simple written instructions __ Difficulty following complicated written instructions __ Difficulty following simple oral (spoken) instructions __ Difficulty following complicated oral (spoken) instructions __ Poor judgment __ Difficulty making decisions __ Difficulty integrating information (putting ideas together to form a complete picture or concept) __ Difficulty following directions while driving __ Becoming lost in familiar locations when driving
