Dr. Mark Pellegrino, who has seen more than 20,000 Fibromyalgia patients over the years and a fellow FM patient, wrote about the “Fibromyalgia spectrum” in his book Fibromyalgia: Up Close & Personal (to order the book, click the book title link or click HERE).
Dr. Pellegrino says that Fibromyalgia is a “broader condition with specific subsets”. He believes that FM is the area between normal and disease, what he refers to as the “gray area”:
Some of the subsets were closer to normal, involving regional pain only, or milder symptoms without numerous associated conditions. Some subsets were closer to abnormal, with some features of connective tissue or rheumatic diseases, but were not quite “there.”
Today I’m convinced Fibromyalgia is indeed a “broader” condition with various subsets. I believe this information is helpful in explaining why everyone’s symptoms are different even though they all have Fibromyalgia.
Many conditions overlap Fibromyalgia and Dr. Muhammad Yunus, MD, (a professor and FM specialist at the University of Illinois College of Medicine) developed the Dysregulation Spectrum Syndrome (DSS) to describe how conditions can overlap. According to Dr. Yunus, Dysregulation Spectrum Syndrome (DSS) as “representing various associated conditions that share similar clinical characteristics and pathologic mechanisms with Fibromyalgia”. Ten conditions that fall under the DSS include:
- Fibromyalgia
- ME/CFS
- tension headaches
- IBS
- migraine headaches
- primary dysmenorrhea
- restless leg syndrome
- myofascial pain syndrome
- periodic limb movement disorder
- temporomandibular pain syndrome
Dr. Yunus says the conditions listed above in the DSS share these characteristics:
- Patients with different conditions share similar profiles.
- Symptoms patients have in common include pain, fatigue, sleeping issues, more females affected than men.
- Hypersensitivity to pain.
- No “diagnostic” pathology that can be measured.
- Patients who share psychological complaints such as depression and anxiety.
- Common genetic factor believed.
- Common hormonal dysfunctions shared.
- TMJ dysfunction.
- Treatments directed at the central nervous system leading to improvement.
Dr. Pellegrino says in his book about the Fibromyalgia spectrum:
I have discussed the Fibromyalgia spectrum with my patients to help them understand the various subsets possible. I do not see Fibromyalgia as a member of a bigger family, but as the main condition. It is the “founding father” and keeps its name. If Fibromyalgia is the founding father, then the various overlapping conditions and subsets become the children. The name Fibromyalgia remains, but different subsets have unique characteristics and together they become the Fibromyalgia spectrum.
This diagram shows the concept of the Fibromyalgia spectrum. The Fibromyalgia entity partially overlaps with the normal entity on one side and the disease entity on the other side. Within the Fibromyalgia entity are 8 subsets. The first subset is in the most “normal” portion of Fibromyalgia, and the 8th subset is in the most “diseased” portion of Fibromyalgia. Each number represents a distinct subset with distinct characteristics.
The eight subsets of the Fibromyalgia spectrum are as follows:
- 1. Predisposed state – The person is at risk for developing FM due to hereditary factors. This may include one or both parents with Fibromyalgia or a rheumatic/connective tissue disease, or a sibling or first-degree relative with Fibromyalgia.
- 2. Preceding state – Clinical Fibromyalgia is still not present. There is no widespread pain or painful tender points. Associated conditions common with Fibromyalgia may be present in this stage, such as headaches, restless leg syndrome, fatigue, or irritable bowel syndrome. Pain may be present at times, but intermittently (not chronic, persistent pains). Even though the individual may have one or more associated condition(s), widespread persistent pain is not present, so therefore Fibromyalgia is not yet present.
- 3. Undiagnosed Fibromyalgia – The individual has chronic pain with painful tender points. A patient may go into remission but they will still stay in the same subset within the spectrum that may or may not meet the American College of Rheumatology-defined 11 of 18 criteria. At this stage the person has milder symptoms and but has not seen a doctor or been diagnosed.
- 4. Regional Fibromyalgia – Individuals in this stage have been diagnosed with Fibromyalgia, but not generalized. Chronic pain is limited to one or a few areas such as the upper body or the low back. The symptoms may wax and wane. Usually, this subset is triggered by a trauma.
- 5. Generalized Fibromyalgia – Those in this stage will have widespread pain and tender points. They will usually meet the American College of Rheumatology-defined 11 of 18 criteria, but as previously explained, one can still have generalized Fibromyalgia with fewer tender points. Present may be various associated conditions. Secondary Fibromyalgia from a primary disease is not included in this subset.
- 6. Fibromyalgia with certain associated conditions – People in this subset have developed associated conditions that Dr. P. says appear to be from “separate entities”. These include ME/CFS, IBS, fatigue, depression and tension and/or migraine headaches. None of these conditions in themselves have “classic” disease laboratory markers or cause tissue destruction, yet they may require treatments in addition to the overall Fibromyalgia treatment. Another associated condition is dysautonomia.
- 7. Fibromyalgia with co-existing mild disease – People in this category have Fibromyalgia along with a specific disease. The disease doesn’t necessarily cause FM but can aggravate FM. Some of the co-existing mild disease may include hormonal problems, infectious problems, neurological conditions, and lung conditions.
- 8. Secondary Fibromyalgia reactive to disease – People in this subset have a primary disease (lupus, RA) and this is what caused their Fibromyalgia. The primary disease requires treatment, and Fibromyalgia may improve with this treatment. However, the Fibromyalgia often requires its own treatment, and can continue to be a major problem even when the primary disease is treated or is in remission.
Dr. Pellegrino says that a patient can move in the spectrum from a lower number to a higher number. However, once the person has moved to a higher subset they can not return to a lower subset.
To read more about the Fibromyalgia Spectrum and to read examples of patients in the different spectrums, please visit this ProHealth link. Where do you fall in the Fibromyalgia Spectrum?
Jeanne says
Dial me in as a 6 on this scale.
Cris says
I ranked a 7 in this analysis – Cervical Dystonia + FMS. Could be an 8, but I’ve heard no associative correlation between FMS and dystonias.
J says
I actually fit in three of those……
1 – my mother has fibromyalgis
5 – It was diagnosed before anything other than my endometriosis, though I did have some of the signs of lupus, I didn’t have enough for a diagnosis yet…
8 – I have lupus. I believe it is the cause of my fibro, though I didn’t technically fit the diagnosis criteria for lupus yet at that point (as far as I understand – though my rheumatologist and I have discussed this and she puts it back before my fibro started)
Bill Hartwell says
It looks like I’d fit in at 7. I have FM along with OA, RAD, MCS, IBS, and really “fun” neurological problems.
Joyce McCague says
I’m at 7. I also have chronic sinusitis and vertigo. No reason for the vertigo has been found yet. This is after several tests including an MRI of the brain and ear canal.
Mary says
Can be from the sinusitis or tight neck muscles esp sub occipital.
Jeanette Stewart says
Yup, looks like I am at number 7 too 🙁 not good. First time I’ve seen this.
Christopher Hranek says
Hello I’ve had FMS since I was in a severe car accident when I was 16… but my doctors kept telling me it was growing pains… I finally found Dr. Paul Dura in Binghamton, NY in 1997 and finally diagnosed with Fibromyalgia. I also have Asthma, Severe Depression and Anxiety, PTSD, IBS, Degenerative Disk Disease, GERD, Severe Sleep Apnea, Restless Leg Syndrom, and Environmental and medicine Allergies.
I finally got my TENS unit from Medicaid… only took over a year but it helps alot with my back and shoulder and neck pain. Here is a list of the meds I take which only manage my pain to a level I don’t go crazy…
1. Savella 100MG 1at night. (Fibromyalgia)
2. Savella 50MG 1 in morning. (Fibromyalgia)
3. Orphenadrine ER (Norflex) 100MG 1 twice a day. (Fibromyalgia)
4. Meloxicam (Mobic) 7.5MG 1 twice a day. (Fibromyalgia)
5. Montelukast SOD (Singulair) 10MG 1 a day. (Asthma)
6. Advair Diskus 500/50 1 puff twice a day. (Asthma)
7. Ventolin HFA 90mcg 2 puffs as needed. (Asthma)
8. Albuterol Sulfate Nebulizer 2.5mg/3ml usually 1 or 2 treatments a day. (Asthma)
9. Qvar 40 mcg 2 puffs at lunch time to reduce Albuterol use. (Asthma)
10. CPAP Machine Pressure Setting 10 every night. (Severe Sleep Apnea)
11. Nasacort AQ 2 puffs twice a day. (Allergies)
12. Loratadine (Claritin) 10MG 1 a day. (Allergies)
13. Mucinex 600MG 2 times a day. (Allergies)
14. Cromolyn Sodium Eye Drops 3 times a day. (Allergies)
15. Prestiq ER 100MG 1 a day. (Depression and Anxiety)
16. Pantoprazole SOD DR (Protonix) 40MG 1 a day. (GERD)
17. One A Day Mens Multi Vitamin.
18. Vitamin D3 2000 1 a day. (Vitamin D deficient)
19. Panadol, Tylenol 500MG. 3 times a day for 10 days 5/7/13. (For cracked tooth)
20. Clindamycin HCL 300MG every 8 hours for 10 days 5/7/13. (For cracked tooth)
Allergic to Penicillin, aspirin, cymbolta, trizanidine.
Hope this helps someone.
Christopher Hranek
Arlene Sharpe says
I’m sure my mother had it and called it arthritis. I”m for sure a 6.
Alice says
I totally disagree that FM is genetic. No one in my family has this disease except me. I have FM, IBS, and a few other things. I have been researching FM for the greater part of 6 years My thoughts are this started as a viral infection that never was properly cured, extreme trauma, or it was environmental
debi says
i believe im a 6, anxiety, ibs, had shingles, psoriasis and so on! also had H pylory
Darlene says
I’m not sure where I fall into this subset categories. Just got diagnosed today with severe subset Fibromyalgia. 18/18 trigger point scale. I have Bipolar II, severe depression and anxiety, PTSD, irritable bowel, muscle spasms mainly in back, neck and shoulder tension, bursitis in hip, acid reflux, diviticulosis, and degenerative disc disease. Someone help me out.