Tuesday, July 26, 2011
1. Know the Questions You Want to Ask Beforehand
In the days leading up to your appointment, leave a notepad out so you can jot down questions as you think of them. This is a lot easier and less frustrating than trying to brainstorm all your questions at once, and makes it much less likely that you will forget any questions you may have. The night before your appointment look over your list and rewrite your questions in order of importance. This helps you go into the doctor's office with a clear idea of what your purpose is for going and what you want to get out of your visit. Once you get in the exam room, though, it can be useful to start by asking one of your easier/less complicated questions first. This helps start the appointment on a positive note and helps you build a rapport with your doctor which will make asking more difficult or detailed questions a little easier. Its also important to remember that doctors are almost always running behind schedule, and many may try to rush through your appointment. If this is the case, stick to your list and do not let the doctor leave before he/she has addressed all your concerns - remember, you are paying your doctor to be there, and you deserve to have all your questions addressed. If you want, make a copy of your list of questions and hand it to the doctor when they walk through the door. If the doctor has your list, he/she is more likely to stick to it and not try to leave before you have discussed each point.
2. Have a Clear List of Symptoms
When dealing with a complex, chronic illness like hypermobility syndrome it is important to always keep a health dairy. You don't have to write a lot, but you should try to jot down all the symptoms you have each day (pain, headache, fatigue, muscle spasm, etc.), how severe those symptoms were (either on a scale from 1-10 or describe what that symptoms kept you from doing), when they happened, how long they lasted, and if you felt there was a specific trigger for any of those symptoms. It is extremely helpful to bring your diary to your visit so your doctor can get a complete look at your condition and how it impacts your life. It can be a bit unpractical for your doctor to read through your entire diary in one visit though, so the night before an appointment I like to print off a blank calendar on a piece of paper and then write the name of each symptom on the days I had them. This is great because it not only tells your doctor your symptoms, but also helps them see any patterns that might help them make a diagnosis or formulate a treatment plan.
3. Bring Another Set of Ears
If you can, it is always helpful to bring someone with you to your appointment. A lot of times I will leave an appointment and ask myself 'what just happened? what did the doctor say?' Things can make sense and sound good in the exam room, but once you leave it it can be hard to remember everything the doctor said and figure out how that doctor talk translates into real English. Having another person is great because they can not only help you have a good appointment, but afterward you can ask them 'what did you think the doctor said?' 'what did you hear?' It always helps to get another person's opinion, especially when it comes to complicated medical matters. If you can't find anyone to go with you (and even if you do), it helps to bring a notebook so you can take notes. This will help you remember the most important things your doctor said. If you go alone you can also ask your doctor if its okay for you to record your session so that you can go back and review it as many times as you need.
4. Make Sure You Leave with a Plan
Hypermobility syndrome is a complex disorder that cannot be treated or solved in just one visit or even by just one doctor. Because of this, its best not to look at any one appointment as 'the one' that will solve all your problems, instead look at it as helping you take one more step in the right direction. So even though you probably wont be leaving your doctor with a 'cure' its important for you to at least leave with a plan. The plan your doctor gives you should have two components: first, a plan for what to do in the immediate future, and second what your next step after that should be. It is important to leave with a plan for the immediate future so that you can be proactive and feel in control of your condition. Even if your doctor doesn't know or understand what is wrong they can still give you a plan - maybe to try a new medication, increase the dosage on a medicine you are already taking, visiting a specialist, or just watching your symptoms for a few more weeks until your next appointment. It is also important to leave with a plan for what your next step will be so that you know even if your current plan/treatment isn't working that its not the end of the road. Hopefully you can leave with a plan for what to do if your current plan works as well as a plan for what to do if it doesn't.
I hope these guidelines will help you get the most out of your next doctor visit. And always remember that if you see a doctor who doubts you or disrespects you, you can and SHOULD find a new one. Even if you have a great doctor it can still be helpful to get a second opinion. Hypermobility syndrome is a complicated illness that will take multiple visits to get control of, so be persistent and never take no for an answer - its your health and you deserve the best care possible!
Love and Hope,
Friday, April 1, 2011
In the April 2011 issue of More magazine, Alice Lesch Kelly writes a brilliant article entitled “The Male-Female Pain Gap” which explores why men often receive better pain relief from their doctors than women. In her article, Kelly uncovers three disturbing statistics ...
1) Women are less likely to be treated for pain and or/pain disorders than men. Kelly gives several examples of studies which show that women are treated less often for pain than men. Kelly explains that one reason for this is that women tend to describe their pain with more emotion than men, which has led many doctors to believe, consciously or unconsciously, that women tend to exaggerate their pain. As a result, the myth that women make up pain that doesn't exist or that they experience pain that is only 'in their heads' continues to circulate within the medical community. These biases often mean that women are more likely to have their pain dismissed or ignored by medical professionals than men.
2) Women experience more pain than men. Kelly explains that despite the fact that women are treated less frequently for pain, they are much more likely to suffer from long-term conditions that cause pain such as fibromyalgia, osteoarthritis, and irritable bowl syndrome, and are also more likely to to suffer from more than one painful condition at a time. There is also evidence that female hormones like estrogen can diminish women's ability to tolerate pain, and can also affect the effectiveness of many painkillers. Kelly also reveals that although there is a general belief that women can handle pain better than men because of their ability to handle childbirth, women tend to have lower pain tolerance thresholds than men. The result? Women tend to experience more pain in their daily lives than men do.
3) Women are less likely to be prescribed adequate pain medication. Despite the fact that women experience more pain than men, Kelly reveals that women are significantly less likely to be prescribed high-potency painkillers and that physicians are often more apprehensive about prescribing potentially addictive drugs to women. She also found that African American women were less likely to receive proper pain medication than white women with the same condition.
So what does all of this mean for patients with Hypermobility Syndrome? Well, although HMS affects both men and women, the condition is more commonly seen in women, and many of the gender biases described above help explain why many female HMS patients spend months and even years trying to get a proper diagnosis. Like fibromyalgia, HMS is often seen as a 'women's disease,' and as such its seriousness and ability to affect a patient's quality of life are often downplayed because of gender biases that suggest that women exaggerate their pain symptoms. Fighting these gender biases within the medical community is one way to ensure that HMS patients of both genders will their voices heard and their health-care needs met.
So, what can I do to make sure my pain is properly treated? Kelly gives some great suggestions for anyone seeking medical assistance for pain. Try following these tips at your next doctors visit to help ensure that your pain symptoms are properly addressed.
1) Use clinical language when describing your pain - when describing your pain symptoms to your doctor try to not get emotional, instead, try to use objective language and give your doctor concrete examples of how the pain is affecting your life. When describing the severity of your pain, use the ten-point scale, with 0 representing no pain and 10 representing the most pain imaginable. For example, instead of telling your doctor 'my back really hurts' try explaining your symptoms like this - 'three days this week I experienced back pain that was a six out of ten, I was forced to take a half-day off of work, and was unable to attend to my household duties so I had to call a friend to watch my children and have my husband cook diner.' Describing your pain this way, by giving specific information about its intensity, duration, and impact on your daily function will give your doctor important medical information, and encourage them to look at your pain more objectively. Remember, pain is a subjective experience, you can't measure it or see it, but doctors like to treat conditions where their are objective tests that can show them there is something wrong. By being more clinical and objective when describing your pain, you are translating your personal experience into language a doctor can better understand and is more likely to respond to.
2) Keep a pain journal - one great way to convey your pain symptoms to your doctor is to keep a pain diary. Be as specific about your symptoms as possible - what type of pain did you have, was it burning, stabbing, aching, crushing? When did the pain occur, was it triggered by something specific? How long did it last, did it respond to anything you did? Did your pain affect your appetite or ability to perform daily tasks? Try going to www.caremark.com/Imagebank/Health_Diaries/DailyPainDiary.pdf or www.healthinaging.org/public_education/pain/my_pain_diary.pdf to download a free template that you can use as your daily pain journal. Each time you visit your doctor, bring your pain dairy. This will give your doctor information that will help them spot patterns in your symptoms and make it easier for them to recognize the presence of an underlying condition or stimulus for your pain. A pain diary will also help you understand your pain better, help you to spot triggers and the treatments that work best for you, which will help you handle your pain better.
3) Find the right doctor - some doctors are more experienced and more comfortable treating pain disorders than others, so if you feel your doctor is not the right fit or if they downplay your pain and/or accuse you of making it up, find a new doctor! Try looking for doctors in your area who have either studied pain management or have experience with pain patients, or try visiting a pain management center. You deserve to have your concerns listened to and respected, so if you find yourself in a situation where you think you are being doubted or disrespected, you have the right and the duty to yourself to seek medical help elsewhere. In her article, Kelly found that female doctors are often more likely to treat pain symptoms than male doctors, especially if the patient is female. So try finding a sympathetic female doctor who will listen to your concerns with true interest and respect.
4) Know that pain management and treatment is often a long term process - even if you find a doctor who is willing and eager to treat your pain, its important to know that pain management is not an exact science. Pain medications work differently in different people, and even if you are prescribed one, there is only a 40-60% chance that it will be the right one. Its important that you understand this when you are going into your doctors appointment and that you ask your doctor about the benefits and risks of different treatment options and leave with a plan already in place for the next treatment option you would like to try if your doctor's first attempt at treating your pain does not work. Try to be open to different types of treatment - antidepressants are often prescribed for chronic pain because they help block pain-communication pathways in your brain, so don't let the stigma of being prescribed an antidepressant deter you from giving that treatment option a try. While you are working with your doctor to find the right pain treatment for you, it is great to try out alternative pain relieving techniques, which can help you get by while you are waiting for a more formal treatment plan. Acupuncture, message, certain types of yoga, meditation, hypnosis and guided relaxation, biofeedback, and other relaxation techniques are often wonderful at treating pain without the need for medication and can teach you skills you can apply at home to help you treat your own pain.
I hope these tips will help you navigate the tricky process of pain management. Just remember that you deserve the best treatment possible and if you don't feel like you are getting that currently, you have the right to seek treatment elsewhere. Keep your chin up and know that there is a solution to your pain problems out there, you just have to have the perseverance to find it!