What causes fibromyalgia? If we knew the answer to that we’d probably have a successful treatment that works for everyone. Unfortunately, There is no definite answer on what causes fibromyalgia, but there are plenty of theories.
Long ago it was considered a type of arthritis (meaning it’s in our bones) and we were sent to the rheumatologist. Fibromyalgia is still most commonly treated by rheumatologists. More current research seems to indicate that it’s more likely a nerve issue. And, more and more we are seeing fibromyalgia treated by neurologists.
Much of the current research indicates that we have some sort of issue in our brain with over-sensitization and an inability to process stimuli. It’s as if our nerves get turned on but then never get turned off.
But, what causes this over-sensitization?
Here are just a few of the current theories about what causes fibromyalgia:
- Dormant Herpes virus – Several theories have suggested that fibromyalgia may be caused by a dormant virus that reactivates.Researchers at the University of Alabama have found a high percentage of fibromyalgia patients have a specific type of herpes virus in their stomach lining. As such, they began treating these patients with a combination of anti-inflammatory and anti-viral, with strong success.
- Small Fiber Polyneuropathy – SFPN is a disease that causes degeneration of certain nerves. This causes neuropathy (pain, numbness, and tingling). SFPN has been found in at least 50% of fibromyalgia patients in various studies.
- Neurological differences – One study found that patients with fibromyalgia have a higher level of connection between the parts of the brain that process pain and the parts that process emotion. This may be a chicken and egg situation. In that we don’t know if those connections formed because of the pain, or if those connections are part of what causes us to feel more pain.Another study found that fibromyalgia patients have increased brain responses to stimuli. A follow up study showed a definitive signature in the brain that they believe can allow them to diagnose fibromyalgia at a rate of 93%.
- Genetics – Several studies have found that the risk of fibromyalgia is higher if someone in your immediate family also has fibromyalgia. This would seem to suggest that fibromyalgia is a genetic issue.
- The vagus nerve hypothesis – The vagus nerve hypothesis suggests that fibromyalgia is caused by an infection directly on the vagus nerve. This could be a dormant herpes virus, or some other infection.
There are many more theories. As I’ve continued to read and research more and more about Fibromyalgia I’ve developed my theories (which may be right or wrong).
What do you believe causes #fibromyalgia ? #fibro Share on XThe potential for misdiagnosis of fibromyalgia
On top of these theories there are likely a high number of people who are misdiagnosed with fibromyalgia.
Here’s where my comments may get dicey and I’m likely to have a few people disagree (keep in mind I’m not a Dr and this is just my opinion).
Fibromyalgia is considered a diagnosis of exclusion, meaning that if there is another diagnosis that can explain your pain, that diagnosis would be the diagnosis of choice.
More often we are seeing people who have illnesses that can explain their symptoms but they are getting a fibromyalgia diagnosis tacked on along with their primary diagnosis. Additionally, there are possible causes that don’t get tested for (including sleep apnea and Lyme disease). As a result, many fibromyalgia patients are later diagnosed with another illness that also explains their symptoms.
My thought is based on the problem I see with the “normal” curve that is applied to testing. There’s a “window” and if you fit in that window you are diagnosed with whatever. But, that assumes that the patient is “normal” that their blood levels, body, etc. are “normal”, but not everyone is normal.
Many of us are outliers in one way or another (a normal temperature is 98.6 but mine is low –this is likely true for many of you as well), this can also be the case for our blood, the way we react to tests, or even the way our body is put together.
So, perhaps those of us who are often diagnosed with fibromyalgia just don’t fit into the “normal” curve. Maybe we really have something else that is causing our symptoms but because we aren’t normal we aren’t being diagnosed properly.
So, that’s one theory I have. However, I don’t think that we are all misdiagnosed. I believe that fibromyalgia is real. and I believe that many of us who fit that diagnosis do so because of one of a couple of reasons.
My theory is that there are likely at least two main causes of fibromyalgia.
1 . Small Fiber Polyneuropathy – They’ve found about 50% of fibromyalgia patients that have been tested for SFPN come back positive. My test returned with borderline results that caused my neurologist to say that I do have SFPN.
SFPN can affect a number of systems, from causing burning on your hands and feet, to digestion, sexual, and urinary symptoms (and who knows what else). This is a disorder that affects your small nerves and they are everywhere!
There also seems to be a genetic component to SFPN and I think they may find that if they start looking closer a large % of us who have seen a genetic link of fibromyalgia in our families likely have SFPN.
2 . Viral – The current research into the relationship between a herpes virus in the stomach and fibromyalgia is very promising and it makes a lot of sense. Herpes also affects the nerves so it could be that the virus is causing the SFPN. The incidence of herpes viruses is pretty high, it’s more likely that you have a herpes virus than that you don’t.
This could be combined with the Vagus Nerve Hypothesis, and it’s possible that the herpes virus is lying dormant on the Vagus nerve causing fibromyalgia.
There’s a lot of research yet to be done, and I’m glad to see so many researchers investigating fibromyalgia from so many directions. It really gives me hope that one day they will find an answer. Do you have a theory on what causes fibromyalgia? Share your thoughts in the comments below.
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Laura Owens says
I was wondering about Herpes Virus. Are you talking about Herpes Simplex or Complex? I have suffered from constant Herpes Simplex episodes since a teenager. Is there a test for this? What is the test, if so? Also, I have had a recurring reactivated Epstein Barr Virus come up in tests. Has there been any mention of this?
Also, you wrote about a test for FM and I was wondering what the current update is with your test and the vaccine?
Julie says
There are many types of Herpes virus, idk that they’ve been specific on which (or if it is a specific one) that they are linking, but I think it may be more likely connected to the ones that cause chickenpox/shingles or potentially the one that causes epstein barr/mononucleosis.
I haven’t seen any updates regarding the FM test or the potential vaccine. TBH, I have my doubts about the validity of all of that work as I expressed in the relevant posts.
Marcela Johnson says
So many questions, so many little answers. And pain is horrendous. This is neurological and neurologist are not being involved in this. And people continue to live in continuous pain that leads people to take their own lives. How many people need to take their lives in order for Fibro to be taken seriously? I rather live in Hell than in Heaven with Fibromyalgia.
ANNE Boutilier says
Fibro appeared in my life 25 years ago, I was36, daughter 9, just signed a mortgage, and had spine surgery. the first day back at work, they laid me off. That’s about when the ex decided to go for a reduction in child support as well. I believe that monumental quantities of overwhelming stress probably has something to do with it. I had spent years just getting by, my dad died before I moved for this job, I’d worked 2 years. I was starting to let my guard down, relax, think that maybe, just maybe I could start to actually enjoy . . . NOPE
Julie says
Stress plays such a huge factor in this illness. I can’t stress enough how important it is to find ways to decrease the stress and just relax. Mindfulness helped me so much in that.
Donna says
I had an accident in 2008, which resulted in an inoperable neck injury. I was in constant pain from my upper chest to the top of my head. I was finally given a diagnosis of CRPS.
For the next 7 years, nothing much changed with my symptoms. But about 5 years ago, I started having widespread, constant pain. It took 3 years, and a number of test run my my GP, and then a neurologist, to finally get a diagnosis of fibromyalgia. The way the neurologist explained it was fairly simple: I had been in constant pain for so long, and the pain centers in my brain had been so over-stimulated, that my brain now perceives everything as pain.
I’m sure it’s a bit more complicated than that, but she was trying to help me find a way to cope with my diagnosis. I was SO praying that they’d find something “fixable”.
Julie says
I’m sorry you didn’t get a fixable answer. I know that’s really all any of us want. There are things that can help.
Lisa says
I’ve had an ANS test that showed I had fight or flight. Layman’s terms, not enough chill in my brain. I cannot relax without training myself to focus on other things or use relax technique. Hard to do when you are throbbing in pain. Also due to post abuse, 4 spine surgeries, Chronic Migraine, weather change, etc.
Joannie D says
I thank you for all your input, it’s alot of food for thought. This certainly is a life altering disease. I can relate to alot of the information you post and now I have more to look into. I am currently under care with a Rheumatologist and question if I should be seeing a neurologist instead. Thank you for sharing, it’s very helpful.
Julie says
It’s still primarily rheumatologists that treat fibromyalgia – despite the overwhelming evidence that it’s a neurological disorder. At this point my neuro does treat my fibro in that the one medication I still take for it, he prescribes. I stopped going to my neuro because I got tired of paying a specialist co-pay to see him 3-4 times/yr just for refills.
Terrie says
Was diagnosed with Fibromyalgia years ago. Weather affects it, ( barometric pressure), stress affects it and eating too many carbs and sweets affects it. All of the people that I know that have it( which is a lot) agree with me. Mine DID get a lot worse after I had to get a tetnas vaccination.
Connie says
I was diagnosed with PMR then Fibro right after my best friend died. I only got my symptoms under control when I retired from a very stressful job. I would like my old self back but I have been able to adapt and so has my family and friends to the new me and my limitations.
Leicia says
Hi. I’m new to this site, and wanted to share something. A little history is necessary. In the past, I was diagnosed with : MVP; Dysautonomia; TMJ; Migraines ; Endometriosis ; several ruptured discs; Sacroilitis ; Chronic Pain; Chronic Fatigue Syndrome ; and Fibromyalgia.
In the last three years, I consulted a Rheumatologist treating Fibromyalgia. After giving me three sessions of tests, including blood tests, Beighton; and DNA; he found that I actually have Ehler’s Danlos Disease, Type III. All the other diseases, and syndromes are secondary to this disease.
I’ve had a very good level of medical care. For example, I went to both Mayo and Scott and White for medical tests. Everyone missed the true diagnosis, until my Rheumatologist.
In the last two years, he’s put me in a clinical trial, which has helped. The trial is Mobic ( 10 mg./ day and Famciclovir, 250 mg./ 3xday. ). This addresses the immune system dysfunction. So, I can now exercise a bit or do an activity, without having a pain flare lasting for a week or more.
Some of you list some of the diagnoses I had before I was diagnosed with EDSIII, so I thought I would let you know about it. It is a genetic disease, and not as rare as you might think. If interested, information available at Ehler’s Danols Foundation.
I hope this helps someone. God bless.
Robin says
What type of tests did you do for the SFPN?
Julie says
It’s a skin biopsy. They punch two small holes and then look at the nerve cells at the skin and below.
lacey says
I also had, and probably still have endometreosis, even though I had a hysterectomy when I just turned 25! As well as fibromyalgia, which I was diagnosed with when I was 23! There MUST some connection? Right?!
Julie says
There’s definitely a huge overlap in possible symptoms. Can’t help but wonder if it’s less an overlap and perhaps more a cause and effect.