Daniel J. Clauw, MD,a rheumatologist and professor of anesthesiology and medicine, and director of the Chronic Pain and Fatigue Research Center at the University of Michigan focused on the nature of pain experienced by patients with fibromyalgia and how clinicians can treat it. Carmen E Gota, MD, of the Cleveland Clinic, stressed the importance of exercise and tailored patient care.
Clauw looked at three areas of pain, centralized pain, peripheral pain, and peripheral neuropathic pain. He states opiates are limited. “’ The body’s natural opioid production system may be impacted in fibromyalgia, so giving them opioids could be fueling the fire,’”
I have written articles about how opiates tend not to be our best choice, two being Fibromyalgia and Opiates for pain: Helpful or hindering?, Opiates and fibromyalgia– a treatment for severe pain but the brain works against us so there is some suggestion that opiates and FM might not get along.
Instead, he recommends tricyclic compounds, serotonin and norepinephrine reuptake inhibitors, and gabapentinoids for centralized pain.
Gota’s talk, on the other hand, looked at non-medication treatments such as exercise.
“In 2010, about 80% of patients were taking analgesic drugs and 52% were taking central acting drugs,” she said. “Over time, we have seen increasing use of [central nervous system] CNS drugs. However, despite the increasing use of centrally acting drugs, we do not see a decrease in the use of analgesics.”
Her recommendations are a strong emphasis on exercise but also CBT; Physical therapy, acupuncture or hydrotherapy for example; and meditation. Exercise has the most consistent impact.
This is one study I posted on Fibromyalgia and exercise
Both Clauw and Gota stress patient management over and above trying to categorize the patient into a diseased state.
“It is important to know your patient because that will determine how you are going to treat your patient,” she added. “Establish a network of collaborators who will help treat your patient, including primary care providers, physical therapists, psychologists or psychiatrists, and sleep, and medical experts.”
And this is… nothing new at all. They have been saying this for years now. Exercise. No opiates. Same old same old, but they seem to be suggestive of comprehensive treatment options to replace the lack of opiates. Medication, psychologists, sleep experts, physio, and so forth. A comprehensive method is indeed needed. And they are right that symptoms need to be attacked and modified where modifications can be done.
I came across an interesting long-term study in Finland on Fibromyalgia spanning 26 years published in the journal of Clinical Rheumatology. The severity of symptoms persists for decades in a fibromyalgia-a 26-year follow-up study.
There has been this sort of rumor that fibromyalgia improves with the time that I have heard several times and so this study is interesting. Also, there is the question of whether we can go into remission or not. Either way, we all want to know what FM will be like in the future. We know it isn’t progressive but we worry it will worsen with age.
It started with 56 patients in 1986 who were given a base questionnaire. 42 of these fulfilled the criteria for FM at that time.
Then 26 later 36 of the patients were located again. and 28 of these filled out another questionnaire. So we are looking basically at the study of these 28 individuals. Nine of the questions on the new questionnaire were identical to the old one, including questions on the quality of life and changes in symptoms.
Three individuals (11%) had recovered from fibromyalgia. (this is a fascinating number here. Makes you want to dig a little into the reasons for their recovery.)
23% reported the remission we hear about, having had one or several symptomless periods lasting at least 1 year. This does suggest that remission is indeed possible.
In others (n=25), all symptoms aside from pain showed a slight deterioration. So we might see a slight slide in symptoms.
Despite aging and the FM, functional levels remained the same over time. This is a key one. Functionality, despite aging, remained consistent.
The actual amount of symptoms reported didn’t change much (10.8 (SD 2.9) vs. 11.1 (SD 4.1), p = 0.75). Symptom changes can lead to a lot of problems, but it looks like over time we do not change overly in them.
Insomnia showed the most significant increase. I wouldn’t say this is much of a surprise since it is a difficult one to manage.
Exercise didn’t have a significant influence on the changes in the measured parameters. But the 3 recovered individuals did an exercise on a regular basis. And they speculate since 21 of 24 (who answered the question on exercise) did exercise it might be why functionality was consistent over time. Most of the participants did exercise and this could be then a key to treatment and functionality. A study of those who do not compare to those who do long-term would be interesting.
Symptoms of FM have persisted in most patients for decades without significant deterioration of self-reported functional ability. About one-fourth of patients had experienced long symptomless periods during their illness. Three patients (11%) reported that they have healed from FM. study
We can conclude in the long-term symptoms will remain but there can be extended periods of remission. And that perhaps exercise helps us maintain our current level of functionality over time. This is a positive study for long-term outlook really. At the very least it says things remain consistent over time, not worse.
So it looks like some clinicians have some uncertainty when it comes to diagnosing Fibromyalgia. Remember the criteria for tenderpoints are no longer used.
Data from the U.S., Europe, and Asia report that approximately half of providers admit uncertainty in confidently making a diagnosis of [fibromyalgia]. Diagnosing [fibromyalgia] more promptly should reduce unnecessary tests, specialty referrals, health care costs, and patient anxiety,” Kim D. Jones, Ph.D., FNP, FAAN, from Oregon Health and Science University School of Nursing and School of Medicine, and colleagues wrote.
“Based on our clinical experience, we surmise that clinicians need a simple screening test that can be performed as part of the routine evaluation in all patients with persistent pain complaints.”
The study recommends adding two things to help with assessments.
Asking whether they have deep, persistent, aching pain all over their body. Widespread pain criteria.
And see if there is a pain when the Achilles tendon is pinched for 4 seconds.
The study involved 52 patients with FM, 108 with chronic pain but not FM, and 192 without pain or FM. They used three measures: BP cuff-evoking pain, digital palpation-evoked pain, and a question about persistent deep aching. Patients were looked at for tenderness to digital pressure at 10 spots and BP cuff-evoked pain and then asked to rate their deep persistent aching widespread pain on a 1-10 scale.
More FM patients answered the questions about persistent deep aching compared to the chronic pain subjects. They had higher bilateral digital evoked tenderness and BP cuff-evoked pain. (But the cuff-evoked pain became non-significant when researchers did multivariate logistic regressions).
The analysis demonstrated pinching the Achilles tendon for more than 4 seconds and a positive answer to the deep aching question did provide a beneficial screening test that indicated a probable diagnosis of fibromyalgia.
“We are recommending two simple assessments to be added to the routine evaluation of any chronic pain patient. We envisage these assessments be used as a screening instrument, not a diagnostic test, with a definitive diagnosis of [fibromyalgia] being reserved for later,” Jones and colleagues wrote. “By raising a provider’s index of suspicion, patients may be spared a lengthy cycling through the medical system before receiving a diagnosis of [fibromyalgia] and beginning treatment.”
Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction, and cognitive dysfunction. Fibromyalgia pain dysfunction involves increased sensitivity to pain known as hyperalgesia for example.
But we all feel hypersensitive to another stimulus as well. And many of us mention things like sound sensitivity and light sensitivity. Well, there was a 2014 study that demonstrated we are indeed sensitive to this as well but because it was an fMRI study it was small. Still, it was interesting to me.
A recent study published in Arthritis & Rheumatology, a journal of the American College of Rheumatology (ACR) shows that people with fibromyalgia have hypersensitivity even if events are non-painful based on Functional magnetic resonance imaging (fMRI) imaging of the brain. Brain imaging reveals reduced activation in primary sensory regions and increased activation in sensory integration regions.
These responses to non-painful stimuli may be the cause of problems with tactile, visual, and auditory stimulation. Patients often do report reduced tolerance to environmental and sensory stimuli in addition to the pain.
The small study included 35 women with fibromyalgia and 25 controls. Patients had an average disease duration of seven years and a mean age of 47. Functional magnetic resonance imaging (fMRI) was used to analyze the brain’s response to visual, tactile-motor, and auditory stimulation. Patients reported increased subjective sensitivity or unpleasantness in response to this multisensory stimulation in daily life.
The results of the fMRI showed patients had reduced “task-evoked activation in primary/secondary visual and auditory areas and augmented responses in the insula and anterior lingual gyrus. Reduced responses in visual and auditory areas were correlated with subjective sensory hyper-sensitivity and clinical severity measures.”
The study concluded there was a strong “attenuation of brain responses to non-painful events in early sensory cortices, accompanied by an amplified response at later stages of sensory integration in the insula,” and these abnormalities are associated with the main FM symptoms suggesting this maybe be linked to the pathology of the syndrome.
Dr. Marina López-Solà from the University of Colorado Boulder stated, “Our study provides new evidence that fibromyalgia patients display altered central processing in response to multisensory stimulation, which is linked to core fibromyalgia symptoms and may be part of the disease pathology. The finding of reduced cortical activation in the visual and auditory brain areas that were associated with patient pain complaints may offer novel targets for neurostimulation treatments in fibromyalgia patients.”
So there are a lot of issues with sleep and fibromyalgia. I also have other chronic pain and vertigo, but seriously since I was young sleep and I have not been on speaking terms.
Yes, this is how I look when I sleep. Child-like and innocent and buried in glitter.
Here are some of the random things you can look forward to with fibromyalgia and sleep:
People will ask from time to time, what is your favorite sleeping position. And I am like, well, I go for all of them several times a night and see whichever I finally pass out from sheer exhaustion. Because it hurts. It just hurts in one position fairly quickly. So flip. And then that hurts. On stomach, then… well you get the point.
So hypnic jerks occur in twilight sleep. So just sort of hovering on the cusp before actual sleep. A state which actually can cause a lot of funky things. But hypnic jerks are just annoying as all hell. You Finally get almost to sleep after Hours and then your leg spasms like a dog when running in its sleep. But with fibromyalgia look forward to your entire body spasming. Yeah, that will wake ya.
So we have non-restorative sleep. So 4 hours or 10 hours and you actually do not feel refreshed. At all. Like you never slept at all. And trust me, when I can, I will sleep in to ‘catch up on sleep. Yet, I do not feel any better doing that. I still feel like it wasn’t enough… except there tends to be more pain with more sleep, because I was in one position for too long.
Without medication, it can take me 2 to 4 hours to fall asleep. And then I wake up repeatedly. Over and over. The night actually passes slowly. I have literally no concept of this deep sleep all night and waking up like no time had passed. I strongly envy my spouse for this quality of a perfectly normal sleep life. On the other hand, he cannot remember his dreams. Whereas I certainly do. With frequent wakings, you tend to remember a lot of dreams.
Yeah, sleep paralysis. With fibromyalgia, it can be an insane struggle to sleep. I actually get severely sleep-deprived without medication to help me. I have actually had nocturnal, Bizzaro seizure-like events when I was severely sleep-deprived which led to me being put back on my sleeping pill. But what usually happens is sleep paralysis. A lot of sleep paralysis.
As in several times in one night. I just get ‘stuck’ in my body, because the brain has shut down movement, as it should, but you are ‘aware’ like you shouldn’t be. Now, this can come with hallucinations, because technically you are not awake. So sort of dream-like things can happen while being aware of being stuck. I often get the feeling some Thing is staring at me.
Sometimes I get the feeling someone is hugging me, tightly, and when I become aware in some way that this is not my spouse I freak out and try to wake myself up, but getting ‘unstuck’ is tricky. And then when I do wake myself up, as soon as I go back to sleep it happens again. I actually have to get up, do something, then go back to bed and try again.
So sleep apnea is a real issue with fibromyalgia and that is something we definitely need to pay attention to. But I do not snore. Really. I’m serious. I may have woken myself up to the suspicious sound of someone snoring, which wasn’t my spouse, but I deny all knowledge of that person being me. I actually did have a sleep study done and I do not have sleep apnea, but this is good to determine, I do though have asthma and allergies which could -in pure theory- cause someone to snore. But not me.
So we can also sometimes have comorbid restless legsyndrome. And I do not have that. But I have had times with restless body syndrome. Sort of this agonizing since you have to move because there is this powerful, intense, Sensation when you don’t. I have no idea if that is what restless leg syndrome feels like. I sometimes get this in my legs, or my arms, or literally my whole body. But if that is what it feels like, at least it isn’t frequent. But it is intense. And it is near impossible to get to sleep like that.
Yes, there is chronic widespread pain. It is often the symptom people think of. Yes, we have pain. All the time. And we can flare up with a lot more than our baseline pain as well. And there are more types of pain than people think. See Fibromyalgia Pains, which includes the tortuous burning of allodynia
The fatigue can be as relentless as the pain. No napping will ever get rid of this intense exhaustion. You feel beaten down, lethargic, tired soon after we do things, and just no energy to spare when we want to do something.
With fibromyalgia, we have some major issues with the quality of sleep. Due to our brains, we do not get as much deep, restorative sleep, so when we wake up we do not feel refreshed. We are very prone to delayed onset insomnia, where we struggle just to get to sleep. As well as sleep apnea and restless leg syndrome.
We have what is often referred to as Fibro Fog. It is intense brain fog that affects our memory, short-term memory, working memory, focus, and concentration. We can sometimes lose our train of thought. Forget the words to things. Or use the wrong word in a conversation.
We often get a lot of comorbid. From migraines to IBS. I gained hypothyroidism and peripheral neuropathy along with chronic migraines and IBS-D. And they compound the chronic pain and chronic illness of Fibromyalgia. Decreasing our quality of life.
Other than the primary categories I just listed we have a lot of other symptoms in the mix. I have sensitivities to chemicals and have to be careful about detergents and cleaning products. I can’t wear make-up or use perfume. I also have low blood pressure, get night sweats, and get palpitations… all symptoms of Fibromyalgia.
All this can be life-altering. I can’t work certain jobs that require a lot of standing, lifting, or repetitive movements. Repetitive movements and lifting aggravate the chest wall pain called Costochondritis to an insane degree. And standing for long periods causes immense pain and sometimes once I do sit down I can’t get back up, the pain in my knees causes them to collapse. So we are limited in that sense on what job we can take. But then is the fibro fog there to make any job complicated beyond measure.
It is variable. I can walk an hour one day, with pain, but not extremepain. The next week I walk 15 minutes and it is extreme pain.
Every single thing we do hurts. Everything has a cost and a consequence to it.
You have to stay within your limits. Those limits change every day. It is a fun game we play called accidentally causing a flare from something you did just last week
Moving your body? That’s a flare
You get so fatigued you wonder if you need a nap, another nap to compound the nap you took, or just melt into a puddle of motivationless goo as the fatigue drags you down.
Your mind is pudding and you have no idea if a sentence is going to come out of your mouth or just garbled nonsense. Not that it matters you don’t even remember the name of the dude you are talking to.
I can tell you for me it was a relief. I had symptoms for years but being undiagnosed is difficult. You have to deal with it all but have no treatment, no label, and no real understanding of what you should do.
I was coping well at the time after having gone through a few years of difficulty coping. I didn’t have chronic migraines yet. I had learned to pace and moderate but I wasn’t in the workforce yet, so didn’t have that additional stressor on me. So I was doing well coping–wise with some Unknown conditions. I speculated it was fibromyalgia. Many things had been ruled out, after all.
But the Label mattered to me. I wanted to know what was wrong. What to do about it. If there was Anything I could do about it. I needed the official diagnosis. However, I pretty much knew by then what it was. And by then my father had already been diagnosed. But you need the label to give doctors. Otherwise, it is all Doubt. It is all ‘maybe it is in your head’. You need someone to make it real for them.
Turns out, the rheumatologist told me I was ‘too young for medication’ so it would be years before I even explored any actual medications for fibromyalgia. And this was long before Lyrica, Cymbalta, and Savella existed. So yeah, that ‘too young’ stigma was a real pain, literally. Especially when the migraines complicated my pain and coping once they arrived and continued to get worse over time.
Still, once you have the Official Diagnosis you can move on to treatment. To what may or may not work for you. You have a general idea of what you are dealing with long-term… which for me, was wildly wrong since I had no Idea so many comorbid could crop up. Or that brain fog could be such a massive problem all on its own.
But you can conceive of coping with it and seeing some sort of future with it, once it is known. But at the same time, you are aware it is chronic and it isn’t going anywhere. And that there really isn’t much known about it or really any effective treatment. This means a lot of the coping burden falls on us. And a long future of trial and error. And realizations on how worse it can get.
Still, I felt relief mostly. To have the name put to the illness. Finally. After so many years. Just Finally.
At a recent appointment with my naturopath, to the wonderfully named Dr. Love, the topic of recurrent muscle pain flares came up. Anti-inflammatory interventions and nervous system calming remedies had not broken the cycle of muscle pain I experience. My pain predominantly occurs in my upper back/shoulder blades on either side and my glute muscles/SI joints. Even though I stretch and strengthen, which helps, I have not broken out of these painful cycles. My naturopath asked what my osteopath had to say about whether my muscles are particularly restricted and not very responsive to treatment. My osteopath said that my thoracic spine and pelvis area were particularly restricted.
Dr. Love explained that tightness and restriction can occur when muscles are contracted for a long period of time, leading to adhesions in the connective tissues. Adhesions are a form of scar tissue that causes connective tissues to stick together in a way that restricts normal movement and function. There is evidence that adhesions in the fascia (a network of connective tissue throughout the body, like a soft skeleton) can contribute to fibromyalgia pain.*
Dr. Love felt that it might be helpful to give me some support for breaking down adhesions, to complement the work of my osteopath and physiotherapist. She prescribed a homeopathic remedy with two ingredients. The first was theosinaminium, which is a derivative of mustard seed oil. It is used as an internal solvent for dissolving scar tissue, fibroids, tumors, and adhesions.** The other ingredient was silicea, which “can stimulate the organism to re-absorb fibrotic conditions and scar-tissue”.***
In the last month, I have experienced decreased nighttime back pain, and greater resiliency in my upper back/shoulders (for example, I have been able to type this entire post without pain, when usually I use voice-t0-text technology). I am not sure if this supplement is the only reason, but since it has no side effects, I am happy to continue to take it to see if it will help me further!
My husband and I have decided the time is finally right to start family planning – or as right as it ever will be! For most (hetero) couples, this might be as simple as throwing out the birth control pill pack and spending more time in the bedroom. Of course, many otherwise healthy couples face fertility challenges that shouldn’t be minimized. But for anyone living with chronic illness, the starting point for trying to conceive may be far behind the average couple.
In my case, I live with fibromyalgia and pelvic pain, including (suspected) endometriosis. My monthly pain from the endometriosis – throbbing cramps – has worsened in the last few months – up to 5-6 out of ten on the pain scale, 15 days a month. My OB-GYN and I decided the time was right to do a laparoscopy to officially diagnose the endometriosis and to remove the painful lesions, with the goal of reducing my overall pain. If my pain is reduced, this is my best chance to endure going off of the birth control pill, which has been my endometriosis treatment for several years. This is why the time will be right for us to try to conceive, or as soon as my laparoscopy is scheduled anyway. It’s strange that my pain has decided the timing instead of life circumstances, but that’s part of being a spoonie, for me at least! If I do have endometriosis, then I may also face fertility challenges, but we will not know this for a while. I’ll cross that bridge when I get there.
The second significant challenge is that the medications I am currently on pose potential risks to a developing fetus. In these cases, the risks are weighed against the benefits for the mother -being exhausted, stressed, depressed, or in-pain Mom is not healthy for the baby either. I have to completely come off of Lyrica, or pregabalin, (FDA approved for Fibro) because a recent study suggests a high risk of birth defects. I have found Lyrica helps with my autonomic nervous system symptoms during flares – goosebumps, chills, temperature intolerance, racing pulse, restless legs, head rushes, increased salivation, etc. Coming off a potent medication is difficult, and often involves worsening pain, sleep, and mood, among other rebound effects. Because my laparoscopy is several months away, I am going to taper off my Lyrica very slowly, over three to four months. Hopefully, this will reduce any rebound symptoms. I’m nervous about what my fibromyalgia will look like off of pregabalin.
I have been taking a long-release tramadol prescription called Tridural. My pain management team believes that the risks of tramadol for the baby – dependence on the opioid activity of tramadol – are outweighed by the benefits to me in terms of pain control. However, I am on the highest Tridural dosage, which has to be taken continuously at the same dose, once a day. So, I am switching to short-acting Tramadol, which you take every 4-6 hours. The goal is to take less Tramadol overall this way because I can modulate the dose according to my daily pain level. On low pain days I take less, on high pain days I take more, with the hope of taking less overall. I recently made the switch and I am having a tough week. I have had difficulty sleeping, stomach upset, and low energy. This is mostly due to trouble getting used to how much or how often I should take the new tramadol. I like having more control however and am hopeful the side effects will subside soon and I will find a good routine.
A further significant issue will be sleep. Having ten hours of sleep is the foundation for my functioning. A bad sleep causes all my fibro symptoms to flare. I take a low dose of doxepin (Silenor)- a tricyclic antidepressant – to help me sleep, with occasional use of zopiclone for nights before important commitments. My doctors are still considering what my sleep prescriptions might be during pregnancy, but zopiclone is generally discouraged. I take a number of supplements like 5htp, melatonin, magnesium, and valerian, which have helped my insomnia a great deal. I will have to come off of all of these too. I am definitely anxious about this part of pregnancy! I am trying a cognitive behavioral therapy for insomnia program by using a book called Sink Into Sleep: A Step by Step Workbook for Reversing Insomnia by Dr. Judith Davidson. Conquering the anxiety I have about the consequences of a bad night’s sleep is definitely helping, by using relaxing sounds and guided relaxation tapes on apps like White Noise and Insight Timer. I take the perspective that all I can do is create the best environment for sleep at the present moment and worrying about what will happen tomorrow is unhelpful. This isn’t a perfect strategy but it is helping me to reduce nighttime wakings now and will hopefully help during pregnancy.
Finally, in order to reduce the pain of pregnancy, I need to focus on strengthening and exercise as much as possible. I already have conditions like sciatica and SI Joint pain, which are common during pregnancy. I don’t have to tell you exercise is difficult during a chronic illness! I have a wonderful physiotherapist (physical therapist) and athletic therapist who designed a gentle strengthening program for me. I found breaking it up into arms, legs, and core exercises that I do on different days helps me to actually do my routine more regularly. However, the unpredictability of each day means it is hard to keep a regular exercise schedule. After three or four flare days in a row, it’s hard to get back into a routine. It’s hard to even call it a routine! However, I know that every day I put in now is going to help during nine months of pregnancy. But to top it off, I am concerned that the reduction in pain medication and associated side effects of tapering off are going to further complicate my exercise goals. It is going to take all of my determination to get stronger!
I hope to continue to share this journey here. It helps me to process and plan for pregnancy. I also hope it raises awareness about the reality of family planning with chronic illness. Ultimately of course I hope it offers shared experiences and support for other hopeful fibro (or chronically ill) Moms-to-be (and Dads too)!
