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!
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!
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.