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Chronic Pelvic Pain and Chronic Pain
Tag: pain
Endometriosis…it’s a real beast and should not be ignored!
Ok ladies, let’s talk about endometriosis. First of all, what is it and why should we care? For those of you lucky ones who don’t know. Endometriosis is a disease where implants of endometrial tissue set up shop all over the body, especially the pelvis and cause pain and painful and heavy periods. For most of us, while most of that endometrial lining sheds out our vaginas during our periods, some of it backwashes up through the fallopian tubes into the pelvis, where nothing happens and it just shrivels up and disappears. In the right unfortunate person, those implants set up shop wherever they want and the havoc ensues. Did you know, that endometriosis behaves almost like a cancer? It can travel through the bloodstream and end up anywhere? We don’t call it cancer because it does not kill you, but it is just as awful. I have even seen endometriosis in brains and lungs! What the hell?!!!
So, how common is it? At first glance, the stats say that it can affect one in ten women. It doesn’t sound like much at first, but when you elevate that to a global level and take into account every country and continent, that amounts to about 190 million reproductive age women who are affected at any one time! Ok, that is a crap ton.
How do you diagnose endometriosis? I have people coming in to see me all the time saying that they know that they have endometriosis and that their doctor told them. I then ask them how they know and what tests that they have had. Most of the time, they haven’t had any or they had one usn and were told that endometriosis was seen on that. AAAAANGH. I am pressing the no buzzer on that one. Besides the instance when you have some gigantic ovarian tumor cluster of endometriosis, you cannot see anything on an ultrasound so that is just not true. The only absolute way to diagnosis endometriosis would be to have a positive biopsy of a lesion or the peritoneum. The other way is to visualize lesions on a laparoscopy. The other possible way is to get a really expensive mri of the pelvis that could possibly see possible lesions that could possibly be endometriosis…or something else. On top of that, sometimes when you do get a biopsy of what appears to be normal appearing peritoneum, 20 percent of the time it could be endometriosis hiding underneath. It is a really sneaky bugger. The realy key is a tissue diagnosis but if I see a bunch of visible classic lesions on laparoscopy, I am going to go for it and treat it.
So, what can we do about it? The ultimate goal in treating endometriosis is removing its hormone food source. That’s right you guessed it ladies. The ovaries themselves provide its main food source. This means that the ultimate permanent treatment for endometriosis is to remove everything: the uterus, cervix, the tubes, and the ovaries. You can also ablate lesions individually or resect them. But, it is practically impossible to remove them completely forever. This usually means a significant surgery with a significant scar and significant down time. On top of that, you are thrown into instant surgical menopause overnight instead of the 6 months to 2 years that it normally takes. Bring on the hot flashes, night sweats, increased farting and bone loss…overnight! Yikes! But at least then it is gone for good, usually about at 6 months after surgery when the last of the hormones have washed out of the system and the microscopic implants that you could not see have resolved.
Now, we have some medical options as well. The old standard was Lupron, an injectable, every month to every three months GnRH analog that shuts down hormone production and puts the patient into medically induced menopause. It can be used for a maximum of 6 to 12 months and maybe can be repeated later if symptoms reoccur. It is expensive and the side effects are kind of awful. We now have more modern oral meds like Orilissa(elagolix) and Myfembree(relugolix). Orilissa is a GnRH antagonist like an oral version of lupron. It also has a bunch of side effects and is not recommend to use beyond 2 years. Myfembree is also an oral med which has some estradiol and norethindrone in it so the menopause side effects are less while still being able to control the endometriosis. It can also be used up to 24 months. It was originally invented to treat fibroids but I have found that it is pretty successful for endometriosis too. Both are costly and you have to jump through multiple hoops and hurdles to get them covered. But, when they work, they can be a real bonus for the patient.
Bottom line is, endometriosis completely sucks, but now there is more than one option out there. Make sure you seek out a physician who is willing to put the time in to help improve your quality of life and help treat the endometriosis in the best way possible and treat you like an individual and be mindful of your particular goals. If you can’t find one near you, come see me. I got ya covered.
Dr. Katz
No, it’s not ok that your vagina hurts and no, you don’t have to just accept it as a part of the natural course of aging….the vagina manifesto!
Oh lord, people. I hear this from patients all the time. They have been in pain and discomfort, sometimes for years, to the point that they can no longer enjoy any part of an intimate relationship or ever feel comfortable in the hinterlands. I am now understanding that this is being told to women by both male and female physicians. What the? I can sort of see it coming from male physicians because they have no personal perspective to relate to but female physicians saying this too? Shame on you ladies! You know better. I am willing to bet that you are just not willling to spend the time dealing with it. I am not sure why though.
Well, I am here to tell you that you don’t have to just accept that….from any physician. Is it true that our vaginas become drier with age? Well, yes they do, but there in fact is all kinds of stuff we can do about it! It is not just something you have to deal with and suffer. I am hollering bullshit over hear when I hear that.
I know we are always going around telling ourselves that sex isn’t everything and it is not the key to a relationship. I am not saying it is either, but we are kidding ourselves if we think that depriving ourselves of that level of intimacy with a person that we really care about, or lust after as the case may be..lol has no consequences.
So, let’ s first talk about why the vagina changes so much as we age. It is time now to bring out the hormone blame. As the hormone levels drop or lose their equilibrium, the vaginal tissue becomes thinner, more friable, more delicate, looser, and unable to self-lubricate. The PH also gets off and leads to increase risk of infections. In fact, the angle of the vagina also changes to the point that hitting that magic g spot becomes almost impossible at times. On top of that, as our testosterone levels drop as well, our libido goes down the toilet. How’s that for abject chicanery? We are dry, we hurt, we don’t want to do it in the first place or we don’t want to do it because we know it will hurt.
I have good news coming! All of this can be addressed and the pain can resolve and the pleasurable sexual functioning can be restored! There are all kinds of creative and safe options that can be individually tailored to the specific woman.
First let’s address the dryness. I said that the vagina gets thinned out and irritated right? So, we need ways to plump it up and relubricate it. I have several. One is to do it with hormones, either orally or directly into the vagina. Usually estrogen is the key here and testosterone too.This is a potentially awesome option with relatively quick positive effects. There are several things to consider before entertaining this option though. You have to know your patient’s entire history. Women are not a candidate for these hormonal options if they have a history of certain cancers or blood clots. Women who have these conditions are not a candidate for hormonal therapy. Also, you have to keep in mind that if they still have their uterus, you cannot give them estrogen only because it could overstimulate the uterus and potentially lead to endometrial hyperplasia or cancer. But, no problem there, just balance it with some progesterone too and you are all good.
The good news is that there are plenty of alternatives for the patients that cannot take hormones. You wouldn’t think of this first but regular fresh out of the kitchen extra virgin olive oil is an excellent lubricant. So is coconut oil. My personal favorite is olive oil because you need less of it and it tends to be less greasy and get everywhere. All of those amazing feminine lubrication products out there tend to be the devil in my opinion. If you read the fine print there, there are all kinds of those things in those products that actually irritate the vagina more than they lubricate it. All that scented stuff that makes us think we have to smell like flowers, cake or pie? I say run in the other direction. The vagina has it’s own smell and no one is going to swoon away by letting it have its own natural odor. But, I have to admit that the packaging is very attractive. They also tend to be expensive too. I say forget it and just go with the olive oil or the coconut oil. Or, at least pick a water-based lubricant like astroglide. It seems to be the safest.
I have another good option for those that cannot do hormone therapy, the forma V intimate rejuvenation treatment. It is a radiofrequency treatment that involves inserting a wand into the vagina multiple times for a ten minute or so, in-office treatment, that replumps the vaginal tissue, relubricates the vaginal tissue, tightens the muscles, resets the vaginal angle and tightens the skin as well. It has no significant risks. You can even get it done if you have had a history of cancer or a previous sling or anything like that. We are using this awesome procedure lately to even return 80 plus year old patients back to the bedroom. There really has been no significant discomfort with this procedure so far in the last several years of doing it besides some pressure at the time of treatment only. The catch is that insurance does not cover it so there is an upfront charge, but every patient I have treated with this procedure has thought it was very effective.
There are other reasons to develop vaginal and vulvar pain as well. The most concerning ones are something called vulvodynia with or without vaginismus. Vulvodynia is a condition when there develops certain pain trigger points around the clitoral hood, around the urethral opening or at the bottom entrances (the vestibule) of the vagina. This trigger points become so inflamed that any attempt at penetration causes an extreme pain response. This can sometimes lead to an intense spasm of the muscles called vaginismus. Sometimes you get lucky and can determine a specific lesion or area of irritated skin that is causing the pain and you can treat that and the pain goes away. More often that not, there are just these trigger points with no set lesion. If this is the case, temporarily treat these areas with topical hormone cream for a month or so and then convert to a long-term topical combination anti-spasm, analgesia, anti-pain medication that the patient may have to use daily for the rest of her life. But these options do really work well and can even help return these patients to an intimate relationship. The other thing i do with these patients is that we take a deep dive into their cleansing regimens and use of certain detergents, soaps, and toilet paper and make any changes to their routine that could be contributing to any inflammation or irritation. I call it my be kind to your vulva tip sheet. You would be surprised at how many things you could be doing to harm yourself without realizing it.
Let’s talk lastly about libido and its relationship to intimate relationships. If you have no desire to have sex because you are afraid it is going to hurt, then you treat as above and once you eliminate the fear of pain, libido will usually return. If your lack of libido is due to a testosterone deficiency, you can either treat with oral micronized testosterone or local vaginal testosterone with great results. If you are not a candidate for hormone therapy, there are a variety of excellent herbal alternatives like schizandra or argin max or even yohimbe that can be very helpful.
The bottom line is that all is not lost. Ask for help. Seek a physician who is actually willing to take the time to get to the bottom of your particular issues. It will be worth it. The bedroom is calling!
Dr. Katz
Why does my period hurt so much?(Primary dysmenorrhea debunked) The pain is real guys!
So, what the heck is primary dysmenorrhea? Primary dysmenorrhea is defined as significant pain during your menstrual cycle without a specific or identifiable cause. To me, this is a bit misleading because there is a cause for the pain, and we will explain that in a bit. I think it should say without a specific anatomical or additional pathologic cause outside of the normal biochemical reactions in our bodies.
Dysmenorrhea can interfere with our quality of life and our daily activities and performance. You know what I mean. We all know women who have to miss work or school because of their severe cramps, pain and bleeding. Dysmenorrhea is the most common gynecologic condition affecting women. The percent is reported anywhere from 17% to 90% depending on what you read. Sometimes the pain is minimal but sometimes it literally stops the woman from being able to function. Current statistics state that up to 15% of women that have dysmenorrhea actually miss work or school or functioning in general with regularity. Even for those women that do not miss work or school, the pain is often enough to reduce focus and productivity. In the United States, it is estimated that there are about 600 million hours of productivity lost to dysmenorrhea. This translates to about 2 billion dollars annually. I think that deserves our attention. Just keep it in mind the next time a work or school colleague has to stay home because they are in pain with their period. This stuff is real folks!
So, what causes this pain? What is primary dysmenorrhea? Primary dysmenorrhea is pain with menses that has no underlying pathology. Dysmenorrhea is called secondary if it caused by another condition like endometriosis, fibroids, pelvic inflammatory disease, or interstitial cystitis. For the purposes of this blog, we are going to focus on primary dysmenorrhea.
Primary dysmenorrhea usually starts at the onset of ovulatory menstrual cycles. Usually women do not ovulate for about 6 to 12 months after menarche( the onset of menses for the first time). Sometimes ovulation does not start for up to 2 years. The pain is usually crampy, comes and goes, and increases in intensity. It starts just before the bleeding starts and lasts up to 72 hours. There can also be nausea, bloating, diarrhea and vomiting.
Who is at risk for primary dysmenorrhea? There are multiple factors: 1) body mass index less than 20, 2) smoking, 3) longer menstrual cycles, 4) irregular or heavy flow, 5) history of sexual assault, 6) menarche younger than 12, 7) age younger than 30, and a family history of dysmenorrhea. Usually it gets better with age and after child bearing
Here is the pathophysiology of primary dysmenorrhea. The pain is probably due to the increased prostanoid secretion. So, what the heck is a prostanoid? Prostanoids are prostaglandins, thoromboxanes, and prostacyclins. And what are those things? Basically, all we need to know is that these are chemicals that cause cramps. So, the process goes something like this. When we ovulate, our progesterone stabilizes something called lysosomes, which are like storage containers full of inflammatory chemicals. At the end of the luteal phase of our cycle, our progesterone levels go down and the lysosomes break down and release something called phopholipase A2. Well this phopholipase starts the cyclooxygenase pathway, which then causes production of the prostanoids that I mentioned before. Then voila! Cramps! The main prostanoids that concern us in dysmenorrhea are the prostaglandins. They are the compounds that cause uterine contractions that restrict blood flow in the uterus. Because blood flow is restricted, there is less oxygen. Because there is less oxygen, metabolites are produced that stimulate pain receptors. In addition to that, some of the prostaglandins lower pain threshold because they actually sensitize the nerve receptors. And, if that weren’t enough, the prostaglandins are also responsible for all the gi symptoms we know and hate. There are other compunds that are involved in this process as well but since the prostaglandins are the main culprit, we are going to focus on those for the purposes of this blog.
As if the prostaglandins weren’t enough of an issue, it has also been documented that women who suffer from primary dysmenorrhea actually have an altered pain sensitivity in the first place. Altered pain perception in dysmenorrhea has been studied all the way back to the 1940s. This altered perception is part of central sensitization syndromes. These syndromes are all associated with pain hypersensitivity without documented tissue injury, inflammation or an actual nervous system lesion. This include several disorders such as low back pain, tension headaches and irritable bowel syndrome. All of these conditions lead to amplified sensory input. These result in the patient having more pain with less stimuli.
I think we have now effectively established that primary dysmenorrhea sucks. So, what can we do about it? There are multiple options. Right now we are going to focus on the non-surgical ones. The goal of each option is to interfere with the prostaglandin production, decrease muscle tone in the uterus, or inhibit pain perception with analgesia. Before we go into these options, it is important to remember that the real key to success and compliance with any regimen is SHARED DECISION MAKING between the patient and the doctor. Have the patient be an active part of deciding on treatment, after discussing side-effects, efficacy, etc and this will help greatly. If the patient is invested in the option, it is much more likely to be helpful.
The first category of options is hormonal. Combined( both estrogen and progesterone) birth control pills are number one in this category. They are effective in about 70-80% of patients. They inhibit ovulation and prevent multiplying of endometrial cells, which decreases prostaglandins, progesterone and vasopressin. This applies to the pill, ring and the patch. Extended use( skipping the placebos) seems to be the most affective. There is a possible risk of blood clots with this method, although this risk is very small in low risk, non-smoking patients.
Progesterone only contraception like Depo Provera or the Mirena Iud. They also inhibit ovulation and eliminate menstrual cycles. Sometimes these methods can cause irregular bleeding. Since this bleeding is still anovulatory, it is not associated with dysmenorrhea. The risk of blood clots is lower with this method. Sometimes there is weight gain reported, but this can usually be avoided with proper nutrition monitoring. Depo Provera itself has been associated with decreased bone density, which seems to be completely reversible after stopping it. While this sounds concerning, it has not been deemed enough of a reason to discourage patient from using it.
There are non hormonal options as well for primary dysmenorrhea. NSAIDS( non steroidal anti inflammatory drugs) are a first line treatment and are effective for the vast majority of patients. They work by inhibiting the cyclooxygenase enzyme we were talking about earlier, which then suppresses prostaglandin production. It’s like stopping the cramps before they can even be created! They also have a direct analgesic effect at the central nervous system level. There is not a lot of evidence to say that one is better than the others. Usually medications like Motrin, ibuprofen, Alleve, and Anaprox are among the first choice options. More expensive medications like Celebrex are reserved for second options. Ideally, these are taken as needed only. One suggested regimen is to start the medication 2 days prior to the onset of menses and continue for the first 72 hours of the menstrua cycle. The key is not to wait until the pain has already gotten started and try to catch up to it, but to act proactively.
Another possible non hormonal option is Magnesium. Magnesium appears to reduce the amount of prostaglandins in menstrual fluid. It is also a muscle relaxant and causes blood vessel dilation. This sounds logical but there is not a lot of data just yet.
Calcium channel blockers like Nifedipine can cause muscle relaxation and decrease prostaglandin production and possibly reduce uterine contractions. More data is needed here as well. I personally would feel hesitant to prescribe a blood pressure medicine for cramping.
Vitamin E, in some small studies has been shown to reduce dysmenorrhea. It has been shown to increase oxygen delivery to uterine cells, decrease prostaglandins production, and inhibit cyclooxygenase. This should result in reduction in pain and cramping. Unfortunately, so far the majority of this data is in the mice population.
Ginger also inhibits cyclooxygenase activity and decreases menstrual pain. The added bonus to ginger is that it is also an antiemetic( anti nausea) so it may help with the gi effects as well. Thus far the doses studied have ranged from 750 to 2000 mg a day with the same efficacy as NSAIDS. Go Ginger!
There are some other proposed non hormonal options for dysmenorrhea as well. All of these require further study but they are interesting prospects. The first is transcutaneous electrical nerve stimulation(TENS). This is hypothesized to work in three ways. 1) it sends electrical impulses to the nerve root, elevates the pain threshold, and the pain sensation is not felt. 2) It stimulates the release of endorphins which reduce pain. 3) It increases dilation of blood vessels in the uterine muscle and reduces hypoxia which also reduces pain.
Acupuncture( needles) and acupressure( firm pressure) stimulate designated locations to relieve pain. There are specific sites on the body on the auricle of the ear, the medial calf muscle, and near the medial malleolus of the ankle that have been identified as possible beneficial treatment areas for dysmenorrhea. There are no specific regimens that have been backed up by studies to recommend with confidence at this point. So far, the range varies from a once a menstrual cycle treatment to daily for 7 days during the menstrual cycle. More to follow later here.
Let’s not forget the good old heating pad applied directly to the suprapubic region. Local heat improves tissue oxygenation, dilutes the levels of prostaglandins and increases blood flow. All of these effects can lead to decreased pain as well. A lot more evidence is needed, but it makes sense.
Apparently exercise and yoga play a role here as well by increasing endorphin release, lowering stress and anxiety, and increasing blood flow. I am here to tell you that as good as that sounds, the thought of jumping on the exercise bike or doing some aerobics in the middle of a crazy period sounds a little daunting to me. I get that there is some moderate quality evidence that this helps over the long term, plus the other health benefits of exercise, but I still think I would have a hard time putting it into practice. I am going to opt to continue to follow how that plays out.
There are a number of herbal and complimentary remedies that have been suggested as well. Rose tea, fish oil, krill oil, sweet fennel seed, low fat vegetarian diet and decreased dairy intake. So far, there is no high quality evidence for any specific dietary supplement. Still, the side effects are minimal so they may be worth trying.
The bottom line is, dysmenorrhea is a real thing that affects millions of women and costs billions of dollars in lost productivity. Beyond that, it can really affect quality of life and daily function both mentally and physically. It deserves our careful attention with a thoughtful plan tailored to the patient’s specific needs and risk factors.
Dr. Katz
Man! It’s hard to feel sexy when you have cancer.
Picture the scene: Your partner gives you the let’s get frisky look. They start petting you in the way you are normally into. The sexy dance has started. The lights are dimmed aaaaaaand……nothing. You are laying there all bald and post chemo( well it has been a few days but you get the idea), fresh off your latest chemo hot flash, tired, bloated and not the least bit sexy….in your mind. You just aren’t up for it. It’s not you. It definitely isn’t your partner. It’s the freakin absence of sexiness that sometimes comes with cancer and chemo. I tell ya, the changes in appearance alone are a real confidence killer at times. My husband is the most amazing partner and best friend on the planet and regular me can’t get enough of him. But, cancer me is another story.
Cancer and cancer treatment can have a very significant impact on a woman’s sexuality in many ways. Disfiguring surgery may be required that can significantly affect your self esteem and confidence. Treatments can sometimes put you into premature menopause with hot flashes, vaginal dryness, pain with intercourse and decreased libido. Certain pelvic cancers require such extensive surgery, radiation, etc that a woman is left without proper function of her sexual organs permanently.
I get it, this sounds all doom and gloomy. The good news is that not all women are left with permanent sexual dysfunction after cancer. Sometimes the effects are temporary and things go back to normal when treatment is over. I am seriously hoping that I fall into this category.
Fortunately the data shows that if a woman was able to have satisfactory sexual experiences before cancer, she will be able to again. The American Cancer Society has a whole section of helpful tips and information for women who are having sexual issues resulting from cancer treatment. Some of these are in fact very helpful. The bottom line of all of them is that sometimes you have to get creative and you have to reinvest in your own self-love and confidence. Sometimes the same techniques for sexual satisfaction that you used before will not be successful anymore. You might not even have the same parts anymore. You may have to use more lubricant when you didn’t have to before. You may have to explore different things that excite you. You may require a vibrator for extra stimulation. You may need to try different positions. You may need to employ more fantasies into your sexual relationships. You may need dilator therapy to re-stretch the vaginal canal. These are just a couple of examples.
There is an interesting set of exercises recommended by the American Cancer Society for patients feeling anxious about sex and the way that their appearance has changed and adjusting to those changes. They suggest looking in the mirror, dressed at first, and noting the changes in your appearance: your surgical scars, ostomies, missing parts, etc. Then notice what you try to avoid looking at. Then while dressed, try to find three things that you like about your appearance. Once you are comfortable looking at yourself as a stranger might see you, then change the exercise and repeat it with you being dressed “sexy” for your partner. Finally, repeat the exercise nude with the same steps until you are able to look at yourself and adjust to the changes and feel comfortable. Don’t stop until you can give yourself 3 compliments like you did in phase one of the exercises.
The last thing to address regarding the impact of cancer on sexuality is the anxiety that goes along with it. It takes time to realize even when treatment is over that you are actually better and that life can go on, including sex. Clear communication is the absolutely paramount here. Talk openly with your partner about your fears and issues. Don’t leave them in the dark and just reject them. They can’t possibly understand what is going on in your head unless you tell them. Get therapy if you need to. Talk openly with your doctors. You be the one to bring it up. I can tell you right now that most physicians are not comfortable enough to make sure to address sexual issues at any time, much less with their cancer patients. This will be something that you really need to take charge of and advocate for if you want things to change and improve. As much as we try to deny it at time, our sexuality and sexual health are key components to our relationships and overall health. Sex is just as important for cancer patients as it is for every day folks. So, do what you can to preserve it. It’s for your health!
Dr. Katz
Does my pain have street cred even if you can’t see it?
It started off innocently enough…..some serious car accidents that I was not supposed to be able to walk away from. So, right off the top, I already know I am a blessed woman. I have not forgotten that. Then, the residual injuries slowly and insidiously crept in and invaded my bones and nerves, but that was to be expected over time. It’s not the kind of thing that you consider very much at the time because you are just lucky to be alive, right? A few aches and pains are nothing compared to losing your spot on Earth. Gotta keep it in perspective.
However, fast forward 20 years and words like stenosis and spurs and compression dominate my latest MRI. Right now as we speak, I am thanking my lucky stars that I did not have any patients today because I am having the granddaddy of all fibro flares. Being able to be at home allows me to take my Motrin, stay in my pajamas, drink a ton of water, and lay back in my ice helmet all day if I need to. I don’t have to show off my unsteady gait because of the inner ear inflammation. I don’t have to struggle just to move my arms and legs while hot pokers of pain are sticking through them as I am faking a smile. I don’t have to worry that my head and neck may blow right off my shoulders at any minute. ( Ok. Just kidding on that one. I know that is not going to happen. It just feels like it is.) I don’t have to be afraid that someone will want to show me affection with a hug that I might stiffen during, afraid to offend them because their display of kindness will only translate to pain for me. I can run to the bathroom as many times as I want with the temporary IBS symptoms that I get. Please do not misunderstand. If I had patients today, I would get myself to the hospital somehow because that is the job that I love and I would just spend the day worrying about who I let down that day anyway..lol. There is no question about it. I am just saying that I can get through this flare a little faster if I am able to concentrate at home. I consider myself lucky at this point. I am not on any chronic pain meds. That is largely because I am ferociously stubborn and the fact that I realize that, with my family history, that would potentially be a move with more risk than benefit. I still go to work. I live my life as fully as I can. I struggle but am mostly successful in maintaining an empowered attitude, which I truly feel impacts the severity of my disease. But, there are some days like this one when I need to just stop a second and breathe.
The thing is, I am not different than millions of people who are suffering from those chronic, invisible diseases every day. There are so many of them: arthritis, chronic fatigue, fibromyalgia, depression and mental illness, diabetes, digestive disorders like IBS or celiac, Lyme disease, migraines, Lupus, and Sjogrens. So, what the heck do I mean by a chronic, invisible disease? An invisible disease is one that does not show obvious external signs or symptoms. They may cause symptoms like dizziness, pain, fatigue, or mental health issues. None of these are things that a person walking by would notice. If they look ok, they must be ok, right? Wrong! Occasionally, we get excited about one of these conditions if they get featured in an article about a celebrity that was affected. But, the vast majority of the time, they go unrecognized and misunderstood by both health care providers and the general public. This really adds to the mental weight of these conditions for the patient and paves the way for feelings of isolation and hopelessness. Did you know that the U.S Department of Health and Human Services estimates that by the end of 2020, 157 million people in the United States will be affected by a chronic illness? In addition to that, the United States Census Bureau estimates that 96% of these chronic illnesses are invisible. That is a huge number! Did you also know that many studies have been done as far back as the 1990s that looked at the lack of validation( belief that the patient was really suffering) as a factor in their disease. The vast majority of patients in the focus groups said that lack of validation was their most significant challenge in managing their condition. It makes sense though, doesn’t it? We all want to be believed. When someone doesn’t believe us, it actually has the power to cause it’s own kind of pain, beside the physical pain we are already experiencing.
There are so many misconceptions about invisible chronic illness. The first one we have already discussed. A person must feel ok if they look ok. We already know that is incorrect. Most patients with these conditions have spent a great deal of time developing coping mechanisms to allow them to enjoy regular daily life. I do it every day. The second one is the conception that the person just needs to rest and they will feel better. I can tell you first hand that all the sleep in the world is not going to break or cure a fibro flare. Sometimes, you can’t even sleep because the pain gets so ridiculous. A third misconception is that all people with chronic invisible illness are really drug seekers. Labelling all of those patients as drug seekers once goes back to the lack of validation of their symptoms that I mentioned earlier. The implication that they are drug seekers indicates that their symptoms cannot be real and they cannot be in any kind of true pain. Wrong again. Another misconception that I hear is that those patients that unable to work because of their pain must “have it made” because they get to stay at home all day and goof off. I actually have heard people say this with an obvious tone of jealousy because they truly think that those homebound patients have a dreamy lifestyle, doing whatever they want all day. Let me paint you a picture: You are trapped at home, in pain, unable to work and support yourself and unable to do the things that you enjoy on a regular basis. Does that actually sound dreamy to you? I think not. Last but not least, I have heard that stress reduction is all that these patients need to get better and that their pain is “all in their head” and they need to “get over it.” Stress is definitely a factor in pain severity, as is emotion. As stress invokes emotion, pain is heightened. Emotion and perception of pain signals are biologically intertwined. However, stress does not CAUSE pain. You can be just sitting somewhere, minding your own business watching butterflies and a flare can envelop you before you know it. That kind of thinking is far too simplistic to explain chronic pain. It really boils down to another type of lack of validation.
The real question to ask is how do you support these patients, not how to cure them. There are no cures as of yet for any of the diseases that I mentioned. There may be treatments, but not cures. Many of these treatments have side effects that need to be weighed against the symptoms of the disease itself. This is important to keep in mind. So, how do you support them? You support them by listening and believing them and throwing away your preconceived biases if possible. Try not to get frustrated because you can’t cure them or that there is no obvious external marker for you to pick up on and follow. Be supportive when they need it and back off when they need space. These patients are challenging to say the least. I always use a multi-disciplinary approach that addresses the physical and the mental aspects of their condition. The team approach has worked the best in my practice. These patients are going to need pain control options, whether it be massage and acupuncture, anti-inflammatorys, Lyrica or narcotics. Their pain is real. Be ready. Most of all, you need to believe them. Sometimes the very key to their path to a reasonable quality of life may just be getting someone to listen. Have a fantastic day everyone!
Dr. Katz
Fibromyalgia is a real pain in my…..everything!
Ah fibromyalgia! So often maligned as a bullshit, all in your head disease. Patients are placated, symptoms downplayed as just being overemotional or “making yourself sick” or dismissed all together. Seeing is believing when it comes to diseases right? If you can’t see anything on the outside of a person, they must be OK right? Wrong! Did you know that some physicians feel so strongly that fibromyalgia is baloney that they will refuse to see patients that have that on their history list. How do I know? Because I am one of them!
Ok, now that I am semi-finished with that initial rant, let me educate you a bit about fibromyalgia. I feel like it is time, as I am sitting here in full flare, probably brought on by the itty bitty amount of stress around me in the world today…lol
Let’s start out with some diagrams about fibromyalgia and all that it affects
Now let’s talk about fibromyalgia. We are not going to be able to discuss everything in the diagrams above, but we are going to hit some of the key points. The following information regarding fibromyalgia comes from a mix of two sources: my own experience and the Mayo Clinic. I figured that it would probably mean more to pull out a big gun like the mayo to help convince the dubious of this crappy disease’s validity. Well, here goes. Fibromyalgia is a real beast. Did you know that fibromyalgia is one of the most common chronic pain conditions in the world. It affects about 10 million people in the United States alone, according to the National Fibromyalgia Association. It is a disorder that is characterized by widespread musculoskeletal pain and fatigue. It does not cause joint damage per say, but the musculoskeletal pain is still quite severe. It also affects sleep, memory and mood. YAY! There is research that suggests that fibromyalgia amplifies painful sensations by affecting the way the brain processes pain signals. Huh? What? For example, a typical person might find light stroking on their arm(“arm tickles”) pleasurable on any given day. For a person with fibromyalgia on a flare day, they might perceive those light arm tickles as a person literally digging into their arm with hot pokers, which is about the furthest from a pleasurable sensation that you can get. This can definitely get in the way of a good episode of hugging or snuggling.
So, why does it hurt? We think that this abnormal processing of pain signals in fibromyalgia patients is due to abnormal levels of the neurotransmitters in the brain, spinal cord, and nerves. We have seen that repeated nerve stimulation in fibromyalgia patients actually causes changes in the brain and abnormally increases these neurotransmitters. On top of that, the pain receptors in the brains of fibromyalgia patients then go on to develop a type of pain memory and become even more sensitive. This results in the receptor “overreacting” to any pain signals.
We really do not know for sure what causes fibromyalgia. It is said that fibromyalgia symptoms can begin after a physical trauma, surgery, infection or significant psychological stress. However, there are other patients with fibromyalgia that gradually develop symptoms over time with no triggering event. Family history also seems to play a role in fibromyalgia. A patient is more likely to develop fibromyalgia if they have a relative who has it. I have seen this myself over the years. In my particular case, I can check off several of those boxes. I am blessed to have survived some horrendous car accidents. I have experienced lifetime movie-worthy psychological stress, in addition to multiple surgeries and I have family members who suffer from fibromyalgia.
The part about the correlation to psychological stress is what really gives fibromyalgia a bad name and it’s victims a lot of discrimination. This fact just makes it easier for people to label those patients as psychosomatic or treat them as if their pain is not real. Trust me the pain is real! The flares are real! I am very fortunate that I do not get flares that often, but when I do, I experience a multitude of symptoms including diffuse hot pain, especially in my neck, back and shoulders. All my sensations are off. I could scratch an itch on my arm and swear I just accidentally burned myself with a hot drill. My head hurts. I feel feverish. I am exhausted. Sometimes I even feel dizzy. My TMJ acts up. I get temporary irritable bowel symptoms. It just really adds up to a super fun day. I will admit that there is a correlation between stress, emotions, and symptoms. The symptoms are definitely worse when I am stressed, but then sometimes I have symptoms even when there is no stress and then I become stressed out because I feel so shitty. It can really be a vicious cycle. I am not sure that anyone can truly understand what a person with fibromyalgia goes through unless they have actually experienced it. We tend to judge people and their disease severity by outward appearances. It’s like we can’t believe something is real until we can “see it with our own eyes.” Well folks, there is nothing to see here and I guarantee you it is very real!
Let’s break down these symptoms a bit more: widespread pain, fatigue, and cognitive difficulties. Fibromyalgia pain is often described as constant dull aching that has lasted at least intermittently for at least three months. It has to occur on both sides of your body and above and below your waist to be considered widespread. As far as fatigue, fibromyalgia patients often wake up exhausted, no matter how long they have slept. Their sleep is often interrupted by pain and other sleep disorders like restless leg syndrome and sleep apnea, just to add to the fun. “Fibro fog” is a term that is used to describe the cognitive troubles like impaired ability to focus, pay attention and concentrate. I get it, fibro fog sounds made up, but it is very real as well. There are times when my level of discomfort really does get in the way of finishing a thought at that moment.
Fibromyalgia likes to hang out with a multitude of other painful diseases like migraines, irritable bowel syndrome, migraines and other headaches, interstitial cystitis( painful bladder syndrome) and TMJ. It’s almost as if all the fibromyalgia components aren’t enough by themselves. It’s like a domino effect with other body systems falling in line with altered pain perception with emotional component. The patients that have more than one of these pain syndromes truly have the capacity to suffer without some compassionate help.
Did you know that women are more likely to develop fibromyalgia than men? According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, women are eight to nine times more likely than men to have fibromyalgia. It has been suggested that women could be more at risk for fibromyalgia in part due to the role that hormones play in the perception of pain. Fluctuating estrogen and progesterone levels during the menstrual cycle seem to correlate with severity of fibromyalgia symptoms in some women. This fact of course leads to more discrimination as women are often thought of as the more emotional sex to begin with. This is consistent with the misguided thinking that fibromyalgia ORIGINATES from emotions and emotional triggers rather than the more accurate fibromyalgia is AFFECTED by or ACCELERATED by emotional triggers. There is a difference.
How is fibromyalgia diagnosed? Back in the good old days, doctors would put a patient through an 18 point pain exam. This exam consisted of a physician pressing firmly on 18 different points on a person’s body to see if any of them were painful. Nowadays we do not put patients through the tender point exam. Now doctors diagnose fibromyalgia based on the patient’s symptoms and if a person has had widespread pain( both sides of the body and above and below the waist) for more than three months with no underlying medical condition that also causes pain. There are no specific blood tests or x rays to diagnose fibromyalgia. But, doctors will probably draw a complete bood count, sed rate, ccp, rheumatoid factor and thyroid function tests to rule out other underlying disease.
So, how do we treat it? Is there any hope? The best option for fibromyalgia treatment is a combination of medication and self care. I am a fan of the multidisclipinary approach, emphasizing good physical and mental heath, along with management of pain to increase quality of life. As far as medications, the U.S Food and Drug Administration has approved three drugs for the treatment of fibromyalgia. Two of these drugs alter serotinin and norepinephrine levels to help control pain: Cymbalta and Savella. There are some older drugs that affect these same neurotransmitters as well like Elavil and Flexeril that can also be helpful. The third drug approved to treat fibromyalgia is Lyrica. Lyrica works by blocking the overactivity of nerve cells that are involved in the transmission of pain. Neurontin works in a similar way and is also sometimes used. Over the counter pain relievers like Tylenol, Motrin, and Alleve can also be helpful. Narcotics and opioids are not a good idea for fibromyalgia because they can lead to dependence and even worsen pain over time a a result. In addition, the side effect of sleepiness would only accentuate the baseline fatigue that fibromyalgia patients already suffer with.
There are non drug therapies as well. Physical exercise is the most effective treatment for fibromyalgia and should be used in addition to any drug therapy. Patients benefit the most from regular aerobic exercise or other body-based therapies like Tai Chi and yoga. Let me be clear, I am not saying anything about it being EASY to exercise with fibromyalgia. More often than not, I am usually cursing like a sailor when I first get started, especially if I am having a bad day and am hurting. The good news is that, even if a patient is in pain, low impact physical exercise will not cause any harm. I have to admit that, even if I am hurting at first, I usually feel better when I am done and I definitely feel better day to day if I keep up an exercise regimen. Physical therapy is also a good option because the therapist can individualize exercises for strength, flexibility and stamina. Water based exercises are very helpful as well. My motto is it’s ok to keep cursing, as long as you keep moving.
Acupuncture has also been suggested as an option for Fibromyalgia. Acupuncture involves the insertion of very thin needles through your skin at particular points on your body. It has been a key component of Chinese medicine for thousands of years. The Chinese use it to balance the flow of energy or life force (chi) that flows through the meridians( pathways) in your body. They believe that inserting these needles will re-balance the energy flow. In Western medicine, the acupuncture points are viewed as places to stimulate nerves, muscles and connective tissue. By stimulating these points, your body’s natural painkillers are stimulated like substance P, endorphins, and met-enkephalin. This stimulation of natural painkillers can possibly help with fibromyalgia pain.
The S.H.I.N.E protocol has also been suggested as a holistic approach to treating fibromyalgia and chronic fatigue syndrome. S stands for sleep. Get adequate sleep to replenish your energy and muscle repair. H stands for hormones. Correct any underlying hormone imbalances such as estrogen, progesterone, testosterone, or thyroid hormones. I stands for immunity and infections. Looks for underlying viral, bacterial, bowel, sinus or yeast infections and treat them. N stands for nutrition. Make sure that your vitamins and minerals are in optimal balance. E stands for exercise as able. Don’t overdo it and cause undue fatigue. Gradually increase exercise as tolerable.
It is very important to keep yourself mentally healthy with fibromyalgia. All that pain can really drag you down. Patients with fibromyalgia have a high percentage of anxiety and depression. Some of them had anxiety and depression before developing fibromyalgia. Some develop anxiety and depression after fibromyalgia. I think that chicken or the egg question can never be answered with certainty. I always recommend regular counselling to my fibromyalgia patients and I use it myself as well. A counsellor can be a fabulous resource for stress management strategies which can help lessen flares. In addition, a counsellor can help get at the root of any psychological trauma the patient may not have processed yet.
Last, but not least, I think it is important with fibromyalgia to take an active hand in developing your own strategy for how to deal with flares, keep moving and increase your own quality of life. I have noticed over the years that the biggest predictor of quality of life in my fibromyalgia patients is whether the patient is actively seeking ways to feel better and be captain of their own ship or if they have given up, resigned to be a victim forever. I have some patients who are in a wheel chair and on disability and I have some patients, like myself, who are active with jobs and living their lives. I really do believe that there is a mental game that must be played and won with fibromyalgia in order to not let it rule your life. I know that for myself, I have to get up every day and will myself to keep plugging and keep going, even if I don’t feel like it. I am not successful every time. There are some days when I am having a flare that is so ridiculous that I have to stay home, drink tons of water and wear an ice helmet around my head and neck. I have to force myself to go for a walk or workout because I don’t always feel like it and it hurts when I do it sometimes, but I know it is essential to keeping me moving I have to come up with ways to manage pain that still allow me to function during the day. My favorite pain management so far is to use some daily turmeric as a supplement, do some kind of workout every day, use Motrin when I have to, and drink tons of water to help me clear whatever inflammatory lactic acid that I have built up in my muscles. Massage is great too, when I can get to an appointment. I try to manage stress the best that I can, but I would be lying to say that I am perfect at it. Stress is unavoidable in my line of work…and life..lol The point is, that I have developed some strategies that are working for me..most of the time. Everybody is different. This disease sucks, but it is not life-threatening. We need to own it and work hard to find whatever strategy works for us. You are not going to cure it, but you need to find a way to live with it. That’s all for now.
Dr. Katz