Following is the transcript of a Q&A held in the ProHealth Chat Room with Dr. Mark Pellegrino – a physician who has devoted his life to treating FM patients, and author of numerous books and articles on the subject.* Dr. Pellegrino joined us from his office at Ohio Pain & Rehab Specialists.
Dr. Pellegrino: Hello. I’m excited to be here and will answer as many questions as I can over the next hour. I have fibromyalgia myself as many of you know, so I’ve always had both a personal and professional interest in this disorder. I am a specialist in Physical Medicine & Rehabilitation so I see a lot of people with chronic pain, including fibromyalgia.
Even though we haven’t found a cure yet, we’ve come a long way over the past 20 years in understanding and treating fibromyalgia and having it be more accepted by the medical community. Let’s hope we find a cure soon, but until then, let’s figure out how to do the best we can despite having fibro…
Q: Greetings, Dr. Pellegrino. Thanks so much for being here! My therapist wants me tested for Fibromyalgia. My question is, what kind of tests will they run?
Dr. Pellegrino: Hi everyone! The best test is the tender point exam. You need 11 of 18 positive points to “officially” meet the FM criteria [though the American College of Rheumatology has proposed ‘preliminary’ diagnostic criteria that do not require a tender point physical exam and can be useful for physicians who are not FM specialists]. There is no single lab test for FM, but we still check labs to evaluate for inflammation or thyroid problems, etc.
Q: Doctor, in your experience does fibro get worse over time or does it get better as you get older?
Dr. Pellegrino: In my experience from seeing more than 20,000 people with fibromyalgia over the past 20 years, I can say:
• About a third of the people do better over time,
• A third of the people stay the same,
• And a third of the people get worse.
So that means that two-thirds of the people will not get worse, which is good.
Those who are diagnosed quickly after developing fibromyalgia symptoms and tried different treatments and find successful treatments are more likely to do better over time. As we all get older, we tend to develop other conditions from degenerative factors, wear and tear, injuries, etc. that cause pain and can make fibromyalgia even more painful.
I think the key is not necessarily trying to get better, but trying to have a stable baseline where one’s function is good and a good quality of life is reported.
Q: Can you have pain mostly on one side of your body with fibromyalgia?
Dr. Pellegrino: Yes this frequently occurs. Typically a person will have pain all over but it could be worse on one side, often the dominant side. It may be that the side that gets used more is more prone to pain compared to the nondominant, less used side.
But I have seen patients with more pain on the nondominant side, and maybe the weaker side is more prone to pain in these individuals.
I always try to identify what the person is doing on a regular basis at work or daily activities and see if one side is being stressed more than the other, which may explain why the pain is favoring that side.
Q: Why does humid, damp or even windy weather cause increased pain in the muscles and joints?
Dr. Pellegrino: Everyone with fibromyalgia is a natural weather forecaster! When the barometric pressure drops, cool damp and otherwise nastier weather usually arrives. We don’t know exactly why our bodies are more sensitive to the low barometric pressure but it probably has to do with our hypersensitive central nervous system that gets activated more with low barometric pressure and causes more pain.
Just as the low barometric pressure signals the weather to be more “dynamic and active,” the low barometric pressure probably signals our nerves to be more “dysfunctional and active” to cause increased fibromyalgia pain.
The high barometric pressure tends to “settle” the weather and similarly, probably settles our central nervous system dysfunction for the time being. That is why we feel better in warm, dry weather.
Q: Why are more women diagnosed with fibromyalgia than men?
Dr. Pellegrino: Women are diagnosed about 6 to 7 times more than men with fibromyalgia. However, when researchers go into the communities looking for fibromyalgia, the ratio between women and men drops. Women are still diagnosed more frequently, but it’s more like 3 to 1.
This does not mean that women are more likely to complain, as we all know men notoriously are wimps when it comes to pain! This probably means that women are more likely to seek medical care, appropriately so, for medical problems including pain.
A number of factors are probably involved in why women are more susceptible to getting fibromyalgia than men. Genetic factors are obvious but there are also other differences between men and women! Estrogen may enhance pain signals once they develop. Testosterone on the other hand may block pain signals.
Differences in how women’s brains and central nervous systems are wired compared to men may also play a role. For example, men have smaller corpus callosums compared to women. I know the men out there don’t think that that’s fair, and they want a bigger corpus callosum.
The corpus callosum is the bundle of nerves that connect the left side of the brain with the right side of the brain, and the larger the connection, the more the communication between the two halves of the brain, which can increase the negative pain “experience” in women with fibromyalgia compared to men.
So in summary I think there is a combination of genetic, hormonal, neurological and behavioral differences in women that may contribute to increased pain/fibromyalgia.
Q: Dr., any link between cancer and fibro?
Dr. Pellegrino: I’m not aware of any link between cancer and FM.
Q: Excuse me please Dr. Pellegrino; is there a general diet we could follow?
Dr. Pellegrino: I’m a big fan of trying to eat your FM away! I believe diets low in carbs and high in protein are better. Many people are sensitive to different foods and these need to be eliminated.
Q: Is gaining weight very quickly common when 1st diagnosed with fibro?
Dr. Pellegrino: Weight gain is a problem AFTER FM is diagnosed. It is not the cause of FM. Reasons for weight gain include…. decreased activity because of the pain, side effects of medicine, and decreased metabolism. [See “Why Weight Gain is a Problem with Fibro, and What to Do About it,” excerpted from Dr. Pellegrino’s book Fibromyalgia: Up Close and Personal.]
Q: Gaining weight can be caused from the medications – some anti-depressants that Drs like to prescribe?
Dr. Pellegrino: Yes, especially meds like tricyclic antidepressants and lately, Lyrica® can cause weight gain.
Q: I would like your opinion on Lyrica® and Cymbalta®.
Dr. Pellegrino: Both drugs have been approved for fibromyalgia! They both help most people with their fibromyalgia pain; the studies have shown that the majority achieve at least 30% improvement in pain.
They have different mechanisms of action. Lyrica works on the calcium channels, which are specialized parts of the nerve that conduct pain signals. Lyrica blocks the pain signal conduction through the sensitivity of the calcium channels. Cymbalta works on the nerve pathway that inhibits pain. It works by increasing the concentration of both serotonin and norepinephrine, two neurotransmitters in the spinal cord that activate nerves that block pain.
So Lyrica works to decrease pain intensity and Cymbalta works to increase the inhibition of pain. Lyrica can cause sedation, swelling and weight gain, and one starts at a low dose usually in the evening and tries to increase the dose to achieve pain-relief.
Don’t get discouraged if you’re not noticing any improvement a low dose; the main reason for starting “low and going slow” is to make sure you’re tolerating the medicine. Sometimes you need to get to a higher dose, perhaps 300 mg/day or more total before you get pain-relief.
Cymbalta works best when taken in the morning and usually starts with a 30 mg dose for the first week and then increase to 60 mg in week two. It can cause nausea, dry mouth, increased sweating and decreased appetite, but is usually very well tolerated. In my opinion, Cymbalta has the better mechanism of action and is better tolerated.
It’s not uncommon to be on both medications, so check with your physician and see if you’re a candidate to take one or both of these medicines. [Note: A third approved drug, Savella® (milnacipran) is similar to Cymbalta in that it works to concentrate and increase the effect of serotonin and norepinephrine in the brain, though exactly how is not known. It would not be taken with Cymbalta owing to risk of serotonin syndrome (excess serotonin). It may generally help mood and fatigue more than pain.]
Q: I have tried different SSRIs and they did nothing for me but make me tired and cause weight gain. My doctor tried a stimulant on me and this helped me turn the corner and make life more livable and be able to return to work part-time.
Dr. Pellegrino: SSRI stands for selective serotonin re-uptake inhibitor and refers to the class of medicines called antidepressants. They work by blocking the breakdown of serotonin (a hormone found to be low in FM and depression), thus making more serotonin available which can improve mood.
An off-label use of SSRIs is the treatment of chronic pain, and it is felt that the increased serotonin helps the body reduce pain. That’s why a lot of people may notice some benefit with their fibromyalgia pain when taking an SSRI. The potential side effects can include weight gain, sexual dysfunction, and making you feel too “numb.” Certainly if the SSRIs did not work for you, you need to discontinue them and try something else.
It sounds like you have benefited from a stimulant medicine, which can be used in people particularly if there’s a lot of fatigue and difficulty concentrating. I have a number of patients for whom I prescribe a stimulant such as Provigil, especially if they have a lot of daytime sleepiness and feel like they’re falling asleep all the time.
There are different drugs available to help various symptoms and your doctor hopefully will be able to find one or more that work for you.
Q: Are fibromyalgia and chronic fatigue syndrome the same illness?
Dr. Pellegrino: Many medical professionals believe that CFS and fibromyalgia are very similar although they have some differences. CFS may be a subset of a broader fibromyalgia syndrome. The top two symptoms for people with FM are pain and fatigue. The top two symptoms for people with CFS are fatigue and pain!
First, people have associated problems including sleep disorder, headaches, difficulty concentrating, impaired memory and joint pains. Many times I see a patient who has previously been diagnosed with CFS and the exam reveals typical painful tender points that meet the criteria for FM.
If the typical painful tender points are present I will go ahead and diagnose fibromyalgia. If the typical tender points are not present and the definition of chronic fatigue syndrome is met, of course I will diagnose CFS.
Q: How common is it for different members of a family to suffer from fibromyalgia or chronic fatigue syndrome?
Dr. Pellegrino: I frequently see more than one family member with fibromyalgia. There are a number of studies that support that FM can be inherited, or at least the tendency to develop it is inherited. Several members of my own family have fibromyalgia through four generations!
I see a lot of mother-daughter-sister-aunt combinations. If one or both parents have FM, the children are more vulnerable to getting it as well.
In a study I published in 1989, we found a variable transmission autosomal dominant type inheritance pattern. That means that 50% of the offspring of a parent with FM have a chance of getting it – whether male or female. There may be increased vulnerability for FM, but something else may have to happen, such as a trauma or infection, to actually trigger the symptoms.
Also, the FM can skip a generation.
Another consideration – if several members of the same family develop fibromyalgia or if a husband and wife combination with fibromyalgia occurs – is a possible infection cause. A number of studies have suggested that there may be a pathogen which can lead to fibromyalgia in the individual but may also cause an infection in other individuals in the proximity. This may be a virus (i.e., Epstein-Barr virus, Parvovirus) or a bacteria infection (i.e., Mycoplasma, Chlamydia, Lyme), or even yeast and parasite infection (i.e., Candida, Giardia).
Your physician can take a careful history and consider whether there may be a genetic or infectious mechanism involved.
Q: Is fibromyalgia an autoimmune disease, Dr. P?
Dr. Pellegrino: Fibromyalgia is not thought to be an autoimmune disease. It is considered a disease of pain processing in which central sensitization develops. This means the brain and spinal cord rewire themselves to the point where they not only become more sensitive to pain but pain gets amplified and our ability to filter out pain becomes defective. [See for example “Fibromyalgia – Ultimately a Disease of Amplified Pain,” excerpted from Fibromyalgia: Up Close and Personal.]
Once the central nervous system has rewired and fibromyalgia is present, there are a number of immune dysfunctions that can occur, but this is not the same as an autoimmune disease.
People can develop fibromyalgia who have a separate autoimmune disease even though the FM mechanism is different. We know that people who have inflammatory disorders and autoimmune disorders are more at risk for developing fibromyalgia, and we call that a reactive fibromyalgia.
Q: Does fibromyalgia affect the heart?
Dr. Pellegrino: Fibromyalgia does not affect the heart muscle per se. It can lead to symptoms that appear to be heart-related such as non-cardiac chest pain. This type of pain can be of particular concern because patients feel that this may represent heart disease. However, this pain is not coming from the heart but from the muscles and soft tissues in the chest wall and rib area such as the pectoralis muscles and intercostal muscle. The ligaments and tendons around the chest area (sternum or breast plate) can also become painful.
Furthermore, individuals with fibromyalgia are more prone to developing mitral valve prolapse or MVP. MVP is a condition where one of the heart valves, the mitral valve, bulges excessively during the heart beat. It can be diagnosed by listening with a stethoscope for a characteristic click-murmur, and the diagnosis is confirmed with a sound wave test called an echocardiogram. Although it sounds scary, most doctors feel that MVP is a benign condition. The majority of people with fibromyalgia also have MVP.
If you are ever concerned about whether you’re having a heart problem because of chest pain or a funny heart rhythm, do not hesitate to see your doctor as soon as possible. People with fibromyalgia get other problems including heart problems, but fibromyalgia itself does not cause heart disease.
Q: Will having Grave’s [thyroid] disease along with FM cause irreversible muscle weakness? My Grave’s disease was treated with radioactive iodine. I went into hypothyroidism and am now on levothyroxine [a thyroid hormone] but still have muscle weakness that won’t go away. I am VERY weak. Can’t walk, fold laundry, even eating fatigues my jaw. Will this be permanent?
Dr. Pellegrino: Many people with Fibromyalgia also have thyroid problems. Usually there’s involvement of the thyroid gland and the thyroid axis of the body in which too little thyroid is produced and this further contributes to bothersome symptoms of fatigue and low energy and even weight gain.
In your case you had a separate thyroid disease called Grave’s disease that required treatment. As a result you have permanent deficient thyroid production requiring supplementation. People with thyroid disease including Grave’s disease can develop muscle weakness that may be irreversible.
True muscle weakness needs to be distinguished from muscle pain and muscle fatigue that causes you to feel weak but clinically your muscle strength is actually normal.
Most people with FM will report muscle weakness but do not have true clinical weakness when I examine them. However, if they have a muscle disease such as myopathy from a thyroid disease, they often have true muscle weakness on exam in addition to reporting their muscles feel weak.
You can discuss with your doctor the degree of true muscle weakness that may be present and see if you’re a candidate for physical therapy to strengthen muscles and reach your best level of endurance and function.
Q: I have fibromyalgia and developed reflex sympathetic dystrophy. They have similar symptoms, are they related?
Dr. Pellegrino: Reflex sympathetic dystrophy (RSD) is a chronically painful condition also known as complex regional pain syndrome. The syndrome usually develops in an injured limb as may occur from a crush injury such as a car running over your foot. However, seemingly minor injuries can trigger RSD.
RSD is characterized by various degrees of burning pain and extreme sensitivity to touch, and can also result in swelling and excessive sweating. RSD is a different condition from FM, but both have similar mechanisms in developing chronic pain. Both ultimately result in hypersensitization of the central nervous system in which there is persistent chronic pain, often burning in nature with extreme sensitivity of the skin. Light touch that’s normally not painful can cause pain (called allodynia). Painful signals become even more painful (called hyperalgesia).
It’s not surprising that treatments for both of these conditions involve trying to calm down the hypersensitive nerves or block the pain signals. Both conditions would be considered a form of central sensitization or central neuropathy.
Q: Can hair loss and fingernail problems be related to fibromyalgia?
Dr. Pellegrino: I don’t think these problems are directly related to fibromyalgia. They can be indirectly related. Many people with FM have hormone dysfunctions (thyroid, pituitary, adrenal, and even ovaries, if you are a woman!) Which may cause abnormal hair loss.
Fibromyalgia can be associated with nutritional dysfunctions as well, and if individuals have low levels of zinc, magnesium or other vitamins and minerals, they may develop some fingernail problems such as white spots, pitting and ridges.
Q: Doctor, do you consider fibro a disability?
Dr. Pellegrino: FM and disability: I try to improve abilities! But sometimes it becomes disabling despite treatment attempts, so you may be determined to be disabled. First priority is to improve function and quality of life despite chronic pain.
Q: What vitamins and minerals would you recommend for someone with fibromyalgia and chronic fatigue syndrome? I would like to try a more natural approach.
Dr. Pellegrino: I applaud your interest in being more natural. My specialty of Physical Medicine and Rehabilitation emphasizes the best of traditional medicine and alternative medicine, and over the years I have found that the alternative and natural approaches are often more effective and healthier in the long run.
For FM and CFS, I like to recommend a magnesium supplement, preferably one that combines Magnesium and Malic Acid, to try to help pain and improve energy. I also have had success with Bovine Colostrum to help fatigue and brain fog symptoms but also it can help boost the immune system. Co-enzyme Q10, D-Ribose, vitamin B12 sublingually and vitamin D3 (cholecalciferol) are other commonly recommended supplements.
I also like to use 5-HTP in the evening to improve sleep and try to increase the body’s production of serotonin. There are many other supplements that could be considered, but the ones I’ve listed are the ones I use more frequently.
You should first check with your treating physician regarding any supplements because of the potential for supplements to interact with prescribed medicines. Good luck in achieving success with the more natural approach!
Q: Is vitamin B12 more effective when using the injectible form? Thank you.
Dr. Pellegrino: I like to measure B12 levels and if low or low normal I first recommend sublingual B12. It gets absorbed well, better than the pills (but not as good as the shots). If the levels do not improve with sublingual form, then shots can be considered.
Q: Do you have any suggestion to combat nighttime teeth grinding? I grind really hard despite wearing a guard. Grinding has caused TMJD.
Dr. Pellegrino: Teeth grinding or bruxism is very common in FM, as is TMJ dysfunction. (Problems in the temporomandibular joint connecting the lower jaw to the skull.) I usually refer to a dental specialist for consideration of a bite splint. I try to calm down spasms/pain with meds, and consider injections also. See if there is a dental specialist who can help you. Good luck!
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Q: My doctor recommends I start exercising. I try but I find my pain increases, and I can get dizzy after just a couple of minutes on a treadmill. What can I do about exercising?
Dr. Pellegrino: Exercise is definitely one of the potentially helpful treatments in fibro and CFS, but it’s so hard to do! First off, you should make sure that you are medically stable to exercise.
Dizziness upon a few minutes of exercise could simply be part of the fibro, but sometimes it can indicate problems with the heart or blood pressure. I’m sure if your doctor is recommending exercise, you are medically “cleared” to pursue this, but make sure he knows about the dizziness, as it may require some additional investigation before further exercise attempts.
Exercise is definitely one of those things that is much easier said than done. I think the process of physically reactivating yourself after you’ve experienced long term symptoms of fibro and CFS is a slow one but a necessary process. I usually recommend working with a therapist to guide you through this process and help prevent you from getting discouraged and make sure you’re doing the right things.
The goal is to find a good balance of increased physical activity that doesn’t increase symptoms. Many find they simply can’t achieve any level of “exercise” so I focus on teaching them how to stretch and to consider frequent stretching a form of exercise.
Also, there are other ways to be more active even though one is not exercising. For example, if you try to move around more when doing daily things – such as slowly pacing back and forth when you’re talking on the phone, or getting out of the house and going places. Moving around as much as possible, you are actually being more active and helping yourself as opposed to just sitting on the couch and not being able to do any exercise.
Q: Should I continue regardless of the symptoms with exercise?
Dr. Pellegrino: You want to determine if exercise is causing FM symptoms to flare up. If so, back off a little (but don’t stop!) to a level where you feel “better” and then build up from there. Find that good balance!
Q: I am always very tired and not able to do any type of exercise with the exception of warm pool therapy without pain later. It does not hurt while I’m doing it but within 24 hours I feel like I’ve been run over by a truck! I cannot work in my yard anymore or even walk around the block without paying a great price. Is there any hope to advance beyond this state?
Dr. Pellegrino: Post-exertional myalgia or significant increased pain some time after exercise is common in fibromyalgia. Probably a combination of tight muscles, micro spasms, micro damage from the activity, metabolic changes and decreased oxygen all play a role in creating this aggravated pain. It can occur with regular increased activities, not just with trying to exercise.
Some supplementation strategies that I have tried with some success include a Magnesium Malic Acid supplement. Magnesium can protect muscles from injury and also help nourish muscles and increase the muscle energy called ATP. You would need to give it a week or so to accumulate into the muscles and hopefully provide some help.
Other supplement considerations are Co-Enzyme Q10, D-Ribose, and even Colostrum for the ability to increase muscle energy and help with muscle recovery. I think there is hope to improve to a better “balance.” Good luck in achieving better muscle balance!
Q: Does fibromyalgia cause shortness of breath or affect the lungs?
Dr. Pellegrino: Fibromyalgia can affect the muscles of the chest wall that make it hurt to take a deep breath and make it hard to take a deep breath. Also, as I mentioned above, people with FM often have mitral valve prolapse, which can lead to increased anxiety or anxiety attacks which causes shortness of breath.
In addition, a condition called upper airway resistant syndrome (UARS) is seen more frequently in FM and CFS. This condition causes us to get short of breath easily, especially if we go up a flight of steps or some other activity that we don’t necessarily think should be that strenuous, but we get extremely short of breath.
UARS is probably caused by the dysfunction of the nerves and muscles involved in breathing and may also lead to a form of a restrictive breathing disorder that gets triggered by exercise or any increased activity.
Q: Is FM generally accepted by the medical community as a legitimate diagnosis in Europe? And, if so, are there other treatments used there that are not being used in the U.S.?
Dr. Pellegrino: From my experience and talking with doctors from all over Europe, fibromyalgia is indeed accepted as a legitimate diagnosis in Europe. Every population study done on fibromyalgia yields the same results no matter what country the research was done in. And that is about 2% to 4% of the population has fibromyalgia. Fibromyalgia is not an “American” diagnosis only.
Frequently, drugs that have been used in Europe for treatment of pain and other conditions are not available in the United States. One example I can think of is the drug Milnacipran, which has been used to treat depression and even pain in Europe for a while now but is not currently available in this country. I know that Milnacipran has been applied to the Food and Drug Administration for approval in the treatment of fibromyalgia pain, so hopefully this drug will soon be available in the U.S.
It appears that people who treat fibromyalgia try to find whatever works no matter what country the patient lives in, whether it be medications, therapy modalities, nutritional supplements, massage, exercise or any number of treatment combinations. There is no magic treatment, however – in Europe or another country – that is not available in the U.S.
Q: What are your feelings about using bio-identical hormones in women past the age of menopause?
Dr. Pellegrino: The research suggests that certain women with fibromyalgia have decreased symptoms when using bio-identical hormones that include Estradiol and Progesterone cream. Many women report increased fibromyalgia symptoms of pain and depression in addition to hot flashes, irritability and rapid heart rate among other symptoms when they begin menopause. A trial of bio-identical hormones could be tried to see if their symptoms improve.
And if they do, then therapy may be continued if the benefits probably would outweigh the risk. Certainly your doctor would have to evaluate you and determine if you would be a candidate and monitor you on these treatments. But I’m encouraged by the success of this particular treatment.
Q: What do you recommend for dry eye problems?
Dr. Pellegrino: Dry eyes are common in fibromyalgia. It probably relates to immune dysfunction which may cause decreased eye secretions and thus dry, irritated and often painful eyes. I believe up to 30% of people with fibromyalgia have dry eye syndrome. This condition can be worse in people who have true autoimmune diseases or inflammatory conditions or work in environments where the air is dry, such as hospitals.
People with fibromyalgia have a hard time wearing contacts. They also will report blurred vision, headaches, and sunlight sensitivity and decreased night vision.
A key treatment for dry eyes, I believe, is Natural Tears solution to keep the eyes moist. Carry a small bottle of Natural Tears and apply frequently during the day. Sometimes your physician has to prescribe a special cream or ointment to use at night to try to improve eye moisture or prevent it from drying out. Avoid environments where there’s a lot of dry air or eye irritants and wear sunglasses or eye protection.
Q: How do you feel about Toradol for fibromyalgia? After I had knee replacement surgery, this medicine made me feel like a new person!
Dr. Pellegrino: Toradol, generic name Ketorolac, is a nonsteroidal anti-inflammatory medicine (NSAID) that is available in pill form but also in injectable form. Some people do well with the pill form, but you have to be careful because it can irritate the stomach lining.
In general, NSAIDs by themselves do not help fibromyalgia pain, but in people who have arthritis, tendonitis, or some type of inflammation, an NSAID may help a lot to reduce pain, perhaps along with other medicines used to treat fibromyalgia.
I have found the injectable form of Ketorolac to be very helpful in fibromyalgia flare-ups. If someone is having increased pain all over, an injection of Ketorolac usually will help within 24 hours and may completely resolve the flare-up.
I’m glad you’re doing well with the Toradol. For you others out there, ask your doctor if you might be a candidate for this medicine, especially if you’re having some of the conditions I mentioned or a flare-up.
Q: Are you familiar with the medication Opana ER and do you use it in your treatment? If so, what are the benefits of this medicine in treating fibromyalgia and/or chronic fatigue syndrome?
Dr. Pellegrino: Opana ER (oxymorphonehydrochloride extended release) is a long acting opioid medicine and it is frequently prescribed by pain management specialists for the treatment of chronic pain.
FM causes chronic pain and many people have tried opioid medicines to help manage their pain. As long as an opioid medicine provides pain relief, improves function and doesn’t cause adverse effects or abuse problems, the benefits could outweigh the risks. Your doctor will monitor you closely if you are prescribed this type of medicine.
Q: I am already on eight prescriptions from my doctor. How can I get started on additional medicines?
Dr. Pellegrino: Most people with fibromyalgia are on three or more drugs so eight medicines is not unusual. But don’t try for the record!
One of my most important rules about medications is to make sure that you are not taking anything that doesn’t work. If you’re on a medication that does not help, then you should stop taking the medicine. Obviously your doctor needs to discontinue the medicine and wean you off if necessary so don’t stop anything on your own.
The reason people with fibromyalgia often require numerous medicines (called polypharmacy) is because we have so many different symptoms that need to be addressed. Different medicines can help our pain, sleep, muscle spasms, energy and depression, and it’s nice if a medicine can work on more than one of our symptoms.
We also have to be careful that we’re not simply expecting a magic pill for every symptom we have or that we will be symptom-free with our medications. Our goal with prescribed medicines should be improvement in our symptoms, improvement in our function, no bad side effects from the medicines, and to be on the lowest possible dose and fewest medicines to achieve that result.
Q: I have Sjogrens, IBS, interstitial cystitis, thoracic outlet syndrome and now fibromyalgia. Are these conditions related? Are you more susceptible to get one when you have another?
Dr. Pellegrino: I know it may seem confusing having a lot of different problems (and painful too).
First off, when you have fibromyalgia you’re more prone to having associated symptoms such as brain fog, fatigue, numbness, irritable bladder and irritable bowel.
Also, people who have autoimmune or inflammatory conditions such as Sjogrens, rheumatoid arthritis and lupus are more prone to also getting fibromyalgia.
And lastly, it is actually possible to have more than one condition other than fibromyalgia! All too often I see people who have not only painful fibromyalgia but painful thoracic outlet syndrome or neuropathy or other conditions that are not related to fibromyalgia but certainly cause additional pain and problems.
There are also conditions which make one more susceptible to getting fibromyalgia. These include autoimmune diseases and inflammatory conditions as I’ve mentioned, but also neck problems such as cervical spondylosis or arthritis, cervical stenosis or narrowing, and an inherited condition called Arnold-Chiari malformation.
Q: When I was six years old I was diagnosed with rheumatic fever after several years of joint pain and fever. As I got older I was eventually diagnosed with fibromyalgia. Could I possibly have had FM instead of rheumatic fever when I was younger?
Dr. Pellegrino: It’s not unusual for fibromyalgia symptoms to be present for years even though a diagnosis may not be made until a later age. I see many adults who are diagnosed with FM who report to me that as a child they were diagnosed with rheumatic fever or arthritis or lupus, but I don’t think they actually ever had those diseases – but rather had childhood fibromyalgia that was not recognized.
In your case, though, you may very well have had rheumatic fever which resolved but made you more at risk for getting fibromyalgia later on in life. Another consideration is that you were vulnerable to getting fibromyalgia perhaps from genetics, and you eventually developed fibromyalgia symptoms regardless of whether or not you had rheumatic fever.
It’s certainly important to have the correct diagnosis regardless of the age of diagnosis, and hopefully you’ll be able to find successful strategies for managing your fibromyalgia.
Q: Do you know of anyone who was ‘cured’ of fibromyalgia?
Dr. Pellegrino: I know I have never cured anyone of FM! Some get into remission. I think everyone can do better, though, and “heal” even if they still have it. Maybe someday soon we will find a cure but in the meantime, appreciate any improvement!
Q: After stopping antidepressant meds I have more energy and organizing abilities than I’ve had in years. If the meds are not a factor could it be remission if I still have the pain?
Dr. Pellegrino: Sometimes the medicines cause increased symptoms/side effects, so stopping them “helps.” Other times the FM can settle down and not require meds – that is, a remission. This is everyone’s goal!
Q: I have had fibromyalgia and chronic fatigue for 33 years. I have undergone 11 surgeries. I cannot sleep despite trying multiple medications. I am desperate for sleep help. What can I do?
Dr. Pellegrino: Poor sleep is one of the most common problems in fibromyalgia, with pain and fatigue being the top two and poor sleep and cognitive dysfunction being the next two. Many times, people who continue to have difficulty sleeping (whether it be falling asleep or staying asleep or getting back to sleep) and do not respond to medications may need further evaluation.
If you haven’t had a sleep study, you might want to check with your doctor to see if this might be appropriate. A sleep study can reveal certain types of sleep disorders or problems that can guide specific treatments.
There is no magic pill that knocks you out at 11 at night and then completely wears off at 7 in the morning and you wake up and go on your merry way. The best you can hope for is something that helps you fall asleep and gets you a decent quality of sleep for 5-6 hours and not leave you with any morning hangover side effects.
For most of us, getting a good 5-6 hours of sleep would be a dream! Make sure you have a good sleep routine where you’re going to bed at the same time and not eating or drinking anything with caffeine in the evening and “clearing your mind.”
Hopefully you’ll be able to find a strategy or medication that gets you more restful sleep.
Q: Can brain fog contribute to dementia later in life, doctor?
Dr. Pellegrino: No, brain fog is NOT related to dementia. Brain fog in FM is difficulty in concentrating, remembering, organizing… but everything is intact, just hard to “open the doors” in your brain because of FM. In dementia, the memories are affected.
Q: How can you feel so bad for so long and then out of the blue you have a few days where you feel completely normal? Thanks!
Dr. Pellegrino: That is the nature of the fibromyalgia beast! The severity of the symptoms can fluctuate and can be triggered by multiple factors such as weather changes, stressors, physical activity or nothing at all!
Sometimes the nerves are more settled down and you actually feel better but before you get used to it, you feel worse again.
Fibromyalgia is predictable in that it will have its ups and downs and our main goal is to have more good days than bad days and have a stable baseline with minimal flare-ups.
Q: I have FM. For several years I’ve had pain that radiates from my front to the back on the left side. It hurts to breathe, and I’ve ended up in Urgent Care. It used to come and go but now it is more constant and activity makes the pain worse. Also I noticed in the morning I have extreme pain around my abdomen. What causes this?
Dr. Pellegrino: Fibromyalgia can cause various pains including chest wall pain and pain that radiates from the front to the back and pain that’s worse with breathing. But people with fibromyalgia can also develop other problems, perhaps unrelated to fibromyalgia, or fibromyalgia makes this other problem even more painful.
In your case there are different possibilities. A condition known as thoracic segmental dysfunction results from pain at the mid spine level (thoracic spine) especially at the joints called the facet joints, and their associated ligaments, muscles and nerves. Pain from this condition can radiate to the back or even into the abdominal area and it can hurt when you take a deep breath and it’s often aggravated when lying down.
Your doctor can look you over and see whether you have something else in addition to fibromyalgia going on. Good luck in getting this painful problem under control.
Q: Does bio-identical estrogen and progesterone contribute to Candidiasis?
Dr. Pellegrino: Candidiasis is an infection caused by the yeast Candida. Normally Candida is present in “friendly” concentrations in the intestines and is helpful in the metabolism of nutrients and maintenance of a healthy intestinal environment. In some situations, the yeast can overgrow and become a more nasty fungus which can cause symptoms such as itching, skin rashes, white spots in the mouth and fatigue.
The overgrown Candida secretes toxins that travel to different parts of the body and can cause symptoms and the fungus can grow out tentacles called hyphae, which can actually puncture the intestines and cause a syndrome called leaky gut syndrome (with pain, diarrhea and bloating).
People with fibromyalgia are more prone to developing Candidiasis, but there are other factors that increase the risk. The most common ones include medications such as antibiotics that destroy friendly bacteria and Lactobacillus but do not bother the Candida and thus allow the Candida to overgrow. Prednisone, thyroid medicine and even hormones such as estrogen and progesterone can also increase the risk of Candidiasis.
If Candidiasis develops, there are treatments including antibiotics specifically for Candida (Diflucan and Nystatin). Certain yeast diets are available and supplements of Lactobacillus can help balance out the normal yeast population in the intestines. Your doctor can also work with you on what may have caused the Candidiasis and if it’s related to medicines, whether the medicines need to be adjusted or discontinued, or simply continue the medicines but also treat and control the Candidiasis. [See also “Candidiasis – Yeast Infection and Nutritional Repair,” excerpted from Fibromyalgia: Up Close and Personal.]
Q: I have had CFS for 10 years and I’m also diabetic. I was injured in a work accident. I have been receiving treatment for soft tissue problems, pinched nerves and herniated discs. The doctors have recommended shots and surgery; is that the way to go?
Dr. Pellegrino: It sounds like you have a lot of different and difficult problems going on. Therapy, medicines, chiropractic treatments, acupuncture and massage are all examples of conservative treatments that can help soft tissue problems including pain from a disc herniation and pinched nerves.
If these treatments do not resolve the problems, then it’s often necessary to consider additional treatment options that can include injections and even surgery. Many types of injections are available for soft tissue problems that include trigger point injection, cortisone shots, and even Botox injections. Injections that could be considered for a disc herniation and pinched nerves include epidurals, nerve blocks, or facet injections.
If your treating physicians have evaluated you and reviewed your tests and recommend specific injections, then I would certainly consider them. Likewise, if conservative measures are not resolving symptoms of disc herniations which could include pinched nerves and weakness and severe pain, sometimes surgery may be recommended. Usually if you reach a point where surgery is recommended, that means that other treatments have not given you the benefit as hoped and surgery would be felt to relieve symptoms.
You would certainly need to discuss this option in detail with the surgeon before making a decision. If you feel that your chances of being better off are greater having more aggressive treatment, then you may decide to pursue these treatments.
Q: Do you serve as an expert witness for legal purposes? If so, how is this arranged? Thank you for your wonderful book!
Dr. Pellegrino: Thank you for your nice comments regarding my book. I have served as an expert witness regarding fibromyalgia; I am usually asked my opinion whether trauma has led to fibromyalgia. My office can be contacted for instructions on how this can be arranged. [See “Contact Us” at the Ohio Rehab Center website http://www.ohiorehabcenter.com/]
The Live Chat Event with Dr. Pellegrino is about to come to a close. We thank Dr. Pellegrino for his typical generosity in being here today – and thank you, everyone, for helping to make this such a lively event. You exceeded the all-time record for chat attendance today.
Bye, Dr. P – Have a great day!
You are awesome – I’m buying your book!
Thank you so VERY much!
Doc P – Thanks for caring and making this invisible illness visible!
Dr. Pellegrino: This was hectic but fun! I am sorry I couldn’t get to all the questions… there were hundreds, seems like millions. Thanks!!!
The Dr. Pellegrino Live Chat Event is now closed. To learn more about the topics covered here and many others, you may wish to order Dr. Pellegrino’s highly recommended book – Fibromyalgia: Up Close and Personal – available now in the ProHealth store (under New Products).
Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.