Is fibromyalgia a progressive condition?
It’s a controversial question that circulates frequently in the fibro community. Many medical professionals say no, but a lot of patients tend to disagree. This article is not intended to “take a side,” but rather start a discussion by sharing both research and the lived experiences of those with fibromyalgia.
First, it’s important to clarify exactly what “progressive” means. According to the U.S. National Library of Medicine, a progressive disease is defined as: “A disease or physical ailment whose course in most cases is the worsening, growth, or spread of the disease. Diseases can be rapidly progressive (typically days to weeks) or slowly progressive (months to years).” Several diseases that have officially been recognized as progressive include cystic fibrosis, osteoarthritis, Alzheimer’s disease and some types of multiple sclerosis. In short, a progressive disease gets worse over time, and causes the person to decline in health and their ability to function.
But even though many of those with fibromyalgia have expressed that their symptoms have worsened over time, many medical professionals believe that fibro cannot be called a progressive condition, as it does not always follow the same trajectory for every patient.
When asked if fibromyalgia is progressive, Dr. Kevin Fleming of the Mayo Clinic Fibromyalgia and Chronic Fatigue Clinic told the National Pain Report:
“In short, no. Fibromyalgia (FM) is felt to be a disorder of pain processing in the central nervous system, especially the brain. FM symptoms wax and wane, and can progressively worsen in some patients, but FM is not progressive in the medical sense that it is non-deforming, non-degenerative and nonfatal (unlike, for example, lupus or Parkinson’s disease).
The longer one has had pain symptoms, the greater the pain has been, and the more non-pain physical symptoms also present, the more likely the symptoms will remain chronic. But symptoms can and do improve, permitting normal daily function, even if pain symptoms never fully resolve. Although the origin of FM remains unclear, fibromyalgia is likely in part a response to environmental factors in genetically predisposed individuals.”
Dr. Richard Podell of The Podell Medical Practice in New Jersey added:
“For most people with moderate or severe fibromyalgia, there are better and worse periods but usually not major progression. For others progression does occur. Part of what the doctor should do is see whether other conditions are involved with the worsening e.g. missed diagnoses like Lyme, sleep issues, depression, spinal discs, etc.”
Studies have shown that those with fibromyalgia may experience fluctuating symptoms throughout their lives. It is possible for a person’s condition to decline, then improve, and so on, and it is also possible for those with fibro to experience periods of remission. Everyone is different, so it follows that no two people share the same exact journey with their condition.
But even though many medical professionals may not believe it is correct to classify fibromyalgia as progressive, that doesn’t mean they are all against the idea that the symptoms of fibro may worsen over time for some people. Some doctors believe a progression of symptoms could be attributed to factors such as:
- Symptoms that are not well-managed
- Certain underlying causes (more research is needed)
- Being unable to exercise due to pain
- Lack of education about the condition
- Comorbid conditions
- Risk factors such as chronic stress, depression or sleep disorders
So what do patients think? We wanted to hear from those who live with the condition, so we asked our Mighty fibromyalgia community if they’ve noticed any changes over tie in their symptoms, and whether they believe their condition is progressing. Here’s what they told us:
- “Yes, I have noticed progression and changes in my fibro symptoms. I was diagnosed five years ago with fibro and chronic fatigue. Since then I have four new chronic illnesses as well. I used to have some ‘good’ days back then. Now not so much. The muscle pain, fatigue and brain fog have just increased. Doing everyday chores like cleaning or grocery shopping and cooking meals has just gotten harder. I also have more symptoms than I did five years ago, such as severe chest wall and rib cage pain (costochondritis), restless leg syndrome, and more bone pain in my lower spine and hips just to name a few.” – Sheri P.
- “Depends. I’m less sensitive to some chemicals now than I was 15-20 years ago but more sensitive to others. I’ve gotten pretty used to my pain. But when something new hurts, it takes longer to get a hold of. Asthma is worse after being relatively symptom free for five years. And so on. It’s the ups and downs with a steady but an ever so slow decline that gets me.” – Colleen S.
- “Yes… initially the pain was ‘discomfort’ and I had minimal brain fog. When I was first diagnosed in high school I was able to focus, remember assignments and sit through classes. Now, seven years later, I’m in significantly more pain, have difficulties with routine cleaning/shopping/etc., and struggle remembering basic things. I’ve even gotten lost coming home from work.” – Bay H.
- “Every few months I experience another ‘jump.’ I finally get used to the level of pain and fatigue and then boom! It hits me harder. I think it’s a flare but it never goes back down.” – Johnathan J.
- “My symptoms used to be sporadic. I worked full-time with flares occasionally, then part-time because it happened too often. Then they became more severe with new symptoms so working was almost impossible. Now it’s every day. My new doctor is great and I’m finally getting answers to my weird new symptoms. It’s a lifelong thing and everyone experiences it differently.” – Tea M.
- “I think I’ve regressed a bit actually. But I tend to do that more in the summer because the heat is better for my body. Brain fog is still pretty present, but the pain levels have gone down and I haven’t really had as many flares or bad flares.” – Krystina K.F.
- “A few things have improved. I’ve found things that help manage my muscle pain better than when I was first diagnosed. And I’m better at knowing what will trigger a flare and prioritize my life accordingly. But the fatigue and joint issues have definitely intensified, especially in the year or so. I feel that I’m more at the mercy of my major symptoms now than when I was younger. I’m realizing that this may be my ‘new normal,’ and that’s discouraging and scary. Feels like I’m going through the grieving process I experienced when I was first diagnosed all over again.” – Mikhaile S.
- “My pain started in my legs at 17 and would come every now and then, I would still be limping but it was manageable. Now 30, the pain is all over, back, neck, legs, shoulders. I’m exhausted constantly, I try to push myself to do as much as I can as I don’t know what the next 10 years will bring.” – Paula T.
- “I think one thing we do is build up a tolerance to the pain we go through. The pain affects me now when it is worse than it was 10 years ago. Then I build up a tolerance to it, and learn to live with it, until the pain increases again.” – Amanda G.
- “I have noticed many symptoms have progressed. Chemical sensitivities. Food allergies. Heat/cold intolerance. Pain. I don’t understand why but I believe it starts with chronic pain. My problems started with a chronic pain issue. The pain is unresolved and years later I have fibro. I have noticed that emotional stress and straying from taking care of myself – body, mind and spirit – makes everything worse.” – Monica S.
- “When I was first diagnosed with fibro, it was strictly pain. After six years I’ve noticed more cognitive problems happening: forgetting things, pin numbers, how to use the washing machine I’ve used 100 times, etc. I try to do puzzles every day to combat it but it’s been creeping up more and more often.” – Traci T.
- “After 15 years of enduring fibromyalgia, I have regressions and progressions. As I age I notice the brain fog and fatigue is worse, but the pain is getting slightly better. I believe this is due to learning all I can about FM and therefore coping more intelligently.” – Susie W.
If you or a loved one has fibromyalgia, remember that everyone’s journey is unique, and the best things you can do are prioritize your health, advocate for your care, stay informed about your condition and seek support from people who understand what you’re going through. Regardless of the path your fibromyalgia takes, whether it progress or regresses or continues to do both, know you are not alone.