Poke those Heart Disease Perils

From the Healthcare Medical Institute:

Acupuncture Reduces Heart Disease Risk

Researchers have concluded that acupuncture reduces the risk of coronary heart disease in patients who have been diagnosed with fibromyalgia. A massive sample size of over 158 420 patients with fibromyalgia were included in the study. A total of 81 843 patients received acupuncture treatments and 76 582 patients never received acupuncture. A total of 12 522 patients developed coronary heart disease during the follow-up period. 4 389 patients receiving acupuncture developed coronary heart disease but 8 133 patients, that did not receive acupuncture, developed coronary heart disease. The researchers conclude that acupuncture “significantly decreased the risk of CHD [coronary heart disease] in patients with fibromyalgia with or without comorbidities.

203. acupuncture

Acupuncture decreased the risk of coronary heart disease equally for both men and women. The risk of coronary heart disease increased with the age of patients; however, acupuncture decreased risks across all age groups. In addition, acupuncture decreased the risk of coronary heart disease regardless of whether or not patients took steroid medications, NSAIDs (nonsteroidal anti-inflammatory drugs), or statins.

Patients receiving acupuncture averaged a total of 7.45 acupuncture sessions. A total of 85% of patients received manual acupuncture, 3.6% received electroacupuncture, and 10.7% received both manual acupuncture and electroacupuncture treatments. The duration of needle retention time averaged between 20 – 30 minutes per acupuncture session. The elicitation of deqi was a basic requirement by the TCM (Traditional Chinese Medicine) doctors.

Most TCM doctors applying acupuncture in the study had a baccalaureate degree from a 7 – 8 year medical doctor program of study. A smaller number of TCM doctors had a post-baccalaureate TCM degree from a 5 year medical doctor program. Acupuncture point selection was individualized based upon differential diagnostics. Importantly, this differs from the majority of research where there is a protocolized, fixed set of acupuncture points assigned to all patients.

The researchers note that prior independent investigations demonstrate that acupuncture is effective for the treatment of fibromyalgia. This study did not investigate clinical efficacy towards alleviation of fibromyalgia itself, but rather investigated whether or not acupuncture prevents coronary heart disease in patients diagnosed with fibromyalgia. The researchers conclude that “the incidence of CHD was significantly lower in the acupuncture cohort than in the no-acupuncture cohort.”

The researchers cite this interest in acupuncture’s ability to protect the heart from damage because pregabalin was the first FDA approved medication for the treatment of fibromyalgia. Pregabalin has been proven to reduce pain, improve sleep, and reduce fatigue in patients with fibromyalgia. The researchers note that “pregabalin has cardiac adverse effects because it may induce heart failure” and acupuncture attenuates “both ischemic injury of the heart and heart failure.” Based on these findings, the researchers recommend a study to determine if acupuncture ameliorates the adverse effects of pregabalin in an effort to reduce risks associated with drug therapy.

The researchers note that the prevention of coronary heart disease may be due to acupuncture’s ability to improve sleep quality. The research team cited prior research demonstrating acupuncture’s ability to alleviate insomnia. They add that insomnia is “highly associated with fibromyalgia and CHD.”

Common fibromyalgia comorbidities (e.g., hypertension, diabetes, heart disease) are associated with elevated levels of systemic inflammation. The researchers note that the prevention of coronary heart disease may be due to acupuncture’s ability to reduce inflammation. The researchers note, “Many previous studies of acupuncture were focused on the analgesic effect of acupuncture, but additional studies in recent years demonstrated that acupuncture attenuated inflammation. Acupuncture attenuated inflammation through the vagus nerve mediated by dopamine.”Untitled

#Fibromyalgia, Fatigue and some (naughty) Fun

I know that some of you cannot even think of having sex without bringing on a flare – Me? I’d put up with a flare at the moment for a little loving!

With Valentine’s Day approaching, imagine this:

It’s 9pm. You’ve just put the kids to bed. It’s been a long, exhausting day. It feels like 4 in the morning and you’re ready to fall over. Suddenly your other half looks at you in that way, smiles and strokes your arm, and you know he/she wants to ‘make lurve.’

So, what’s your reaction?

Decreased sexual interest is not considered a common characteristic of FM. Nonetheless, a 2005 Turkish study demonstrates that female patients with FM have distinct sexual dysfunction compared with healthy controls.292.FM Lovesong

What is Normal Sexual Function?

For women, sex is a complex issue because it involves both physical and emotional reactions. Normal sexual functioning, however, may be divided into specific stages that include:

  • Desire
  • Arousal
  • Orgasm
  • Relaxation

They are all tied together with feelings of fulfillment, satisfaction and pleasure. For a woman, this is achieved not simply through physical touching. It involves psychological and emotional engagement. It may be difficult at times to remain sexually engaged when your body is in pain or fatigued or you are experiencing low self-esteem.

Types of Sexual Dysfunction in Women with Fibromyalgia

Sexual dysfunction refers to the inability to either engage in or enjoy the sexual act. It occurs for a number of different reasons that include illness, the impact of medications on the body, or emotional distress.

Women with fibromyalgia may suffer from one or more types of sexual dysfunction. The more common types include:

  1. Decreased sexual desire or drive
  2. Less arousal but maybe adequate sex drive
  3. Difficulty in achieving orgasm
  4. Increased pain with sexual intercourse or vaginal contact
  5. Failure of the body to co-operate with the desired position or movement

I am not even pretending that I know how to help with the first three types. I feel I can offer some suggestion on the last two.

We already know that FM is more foe than friend.  While many of us are too tired for sex, it is the muscle pain that leads to pressure and a squeezing of the pelvic area and lower back that ultimately result in muscle cramping during sexual intercourse. This naturally causes a great deal of discomfort, making it difficult to engage in certain sexual behaviours.

Sex may eventually become something that is no longer pleasurable (I can’t believe I said that!), but a negative experience. One’s natural tendency is to avoid such physically intimate situations, especially given that one is too tired or sore for sex.

sexSo, who can be bothered? (Pick me! Pick me!)

Further, taking a toll on one’s sex life are FM medications that decrease libido and a man’s ability to attain or maintain erection. Anti-depressants can also take a toll on a person’s sexual functioning. A person living with FM may react negatively to bodily changes, like weight changes and the loss of muscle mass.

As lovers feel less connected in the boudoir, their sexual relationship takes a hit (ie: unless you take steps to stay mentally and spiritually connected while attempting to be physically intimate). It’s important to realise that the release of hormones and endorphins, natural opioids, during sex can help to relieve FM symptoms, like pain and depression, and boost well-being. This double-sided sword is that while sex can relieve symptoms of FM, FM itself may result in a decreased libido, and, definitely, fatigue and pain that hinder a person’s desire and ability to engage in sexual intercourse.

Maintaining your sex life is vital to your health and well-being. Consider adopting this plan on Tuesday:

  • Plan ahead to make this the night for sexual relations. Practice acceptance. Adapt. Make peace with the fact that you need to deal with this condition, and then allow yourself to reclaim your life in every way. This means ensuring you do not wear yourself out earlier during the day. You need to be well-rested so pace yourself.
  • If you have stiffness of your muscles or joints, consider ways to reduce the stiffness. Do some stretching to relax the muscles and make them limber.
  • Practice reducing stress. You can do breathing exercises. You can also combine exercise with stress reduction by playing soothing music while you do yoga. For some, a guided meditation or visualization will produce the desired result.
  • Take a warm bath or shower. A bath is excellent because it means you can pamper yourself. Play soft, romantic or sensual music and indulge in an sumptuous bubble bath
  • Prepare the room so it is relaxing, comfortable and reignites your passion. Clean, fresh, fragrant sheets can help. Pillows you can place to make positions easier are good tools to have handy. Soft lights and even softer music can also be effective in setting the right mood.
  • When it comes to the actual sex act, talk to your partner. Consider some positions that do not cause any discomfort but result in pleasure for both of you. Allow your partner to be more active during sex if possible (Absolutely nothing bad about THAT!) Talk it through.
  • Experiment with different sexual positions. There are plenty of activities and positions that are ideal for fatigue; and many ways to avoid painful sex. And have fun trying them ALL out! (see the attachment)
  • Enjoy each other despite flare ups. Part of this is not being so goal-oriented during a love-making session. Allow things to happen as they can.
  • Stay physically connected by just cuddling (unless such is not made possible by allondynia, where the brain misinterprets neutral or pleasant stimuli for pain).

The important thing is to learn what has produced your sexual dysfunction and to make an effort to maintain interest in sex. You can discuss any concerns you have with your doctor and your partner or spouse. Being honest with your intimate partner will help you maintain an active sex life.

Finally?

Don’t give up. It might feel like you’re never going to want to have sex ever again – but that’s the fibro talking, not you. Lust strikes at the oddest moment, and people can have sex in a myriad of ways. So have fun exploring what works best for you. and you’ll feel IT again.

And when you do, take advantage of it, and enjoy it!

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For those grown-ups among us (and those NOT easily offended), please check out these recommended sexual positions that require less physical exertion. This is adult content –  By clicking “I Agree” below, you are agreeing to the following:

  1. You are an adult, at least 18 years of age, you are familiar with and understand the standards and laws of your local community regarding sexually oriented media. You represent that, based on your familiarity with the standards and laws of your local community, you will not be violating any applicable standards or laws by requesting, receiving, downloading or possessing any of the video, audio, graphics, images or text (“Adult Material”) available on this Website.
  2. You hereby acknowledge that any use of this Website is at your sole risk. You understand that by accepting the terms of this Agreement, you are agreeing to hold the Publisher of this Web Site harmless from any responsibilities or liabilities related to your use of this Web Site and the Adult Material contained herein.
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How Many do You do?

Q. What do talking, showering, and doing laundry have in common?

A. They’re all activities that seem simple to most people, but can be thoroughly exhausting for us.

TheMighty.com partnered with the National Fibromyalgia Association to discover what everyday activities we engage in (or don’t engage in) because of fibromyalgia. How many do you do? Got any to add?

  1. “Not showering every day or keeping up with laundry. People see widget 5me as lazy but in reality, I’m prioritizing what I can do each day. Otherwise I’d be out for a month. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks.”
  2. “I keep a lot of my curtains closed and the brightness on devices on lowest; when I’m having a flare light hurts me so much. My smell and hearing are too sensitive. Repetitive noises are agony to me.”
  3. “Napping. I hate sleeping during the day. I feel miserable when I nap, but if I don’t lie down, I will fall down. Some of my friends love to nap and envy me when I tell them I spent the afternoon in bed. To me, though, napping is just one more way my life is not my own now.”
  4. I clench my jaw really tightly when in pain (probably just looks like I’m pulling weird faces!). Also people think I’m strange for not drinking alcohol, but it reacts with my meds and a hangover feels a million times worse!”
  5. “I rub my hands a lot and sometimes my feet. Most people don’t think this is anything more than self-comfort. The reality is, the weakness and pain in my hands, arms and legs is something I deal with every day.”
  6. “This weekend I was at a wedding. Most people at my table were dancing and were trying to tell me to join them. They don’t know I was bravely smiling through the pain and that it was a two-hour battle just to get dressed up and show up. There was no strength left for dancing.”
  7. “Google-Earth-ing everywhere I have to go (or am considering going) and have never been before to assess if the building would have stairs (inside and out) and a parking spot nearby.”
  8. “I wear a lot of fuzzy socks because I have cold feet issues. Having fibromyalgia means when I get cold my pain gets elevated even worse. Ugg boots are also helpful because they are soft and warm.”
  9. “Avoiding family gatherings as much as possible. I come from a very big and loud family who likes to hug. I’m surrounded by all of them and the kids are running a round and everyone is talking laughing and having a good time. No one realizes how huge that sensory overload is for me.”
  10. “A prime example is ‘test-driving’ chairs to find the most comfortable one. At work, there are several office chairs in the main work area that are used by various people on all shifts, so they get moved around and swapped for each other pretty often. When I’m working in that area, I sit in each chair for a few seconds to see which one is going to cause me the least amount of pain throughout the day (the chairs are identical, but some are older/used more than others). People who don’t know I have fibro may find it odd or humorous, but I think even people who do know seem to find it ‘amusing’ at times.”
  11. 119-fibro-fog“I’m soon to be 27 and have the memory of a goldfish. I mix up words and stutter so bad. People don’t realize I have fibromyalgia and this is why I do this.”
  12. “Taking a deep breath as I reach the entrance door at work, putting a massive smile on my face. Chest out, shoulders back… keeping on my ‘I’m OK’ face until I crumble back into my car at the end of the shift.”
  13. “I really don’t talk much because I have fibro fog and find it hard to carry on a conversation. So this sometimes makes me appear disinterested in others, but that isn’t the case at all. I find it hard to find the words to say.”
  14. “When I have to stand for more than a couple of minutes I rock back and forth to distract myself from the pain. Most think it’s just a nervous habit, but in essence it’s my pain control.”
  15. Giving up my social life. I go to work, and I come home. That’s all I can manage to do. I have to choose between going to church, family activities, and meeting with friends over rest. And lately, rest wins.”
  16. “Sometimes I’m having a really bad flare and can’t get out. Rather than admitting my weakness, I say the kids are sick or something, so no harm, no foul. It makes me uncomfortable admitting it, and it makes them feel even more uncomfortable/angry/disappointed, etc.”
  17. “I walk out of work when my shift ends and drive right home. I don’t say goodbye to anyone because if we end up chatting it’ll be even longer until I get to lounge at home and rest.”
  18. “Turning down TVs and radios when people come in the room. The noise sensitivity makes sounds get louder the more there are different sounds. Each added person, instead of making it harder to hear something, amplifies the sounds.”
  19. “When you take an extra day off work from a holiday weekend. It’s not to just play around and be lazy. It takes me days to recover from travel, from cooking the Thanksgiving turkey, from Christmas shopping, even from just sitting in an uncomfortable chair eating a holiday meal with family and friends.”
  20. “In college, people don’t realize I always tell them, ‘I have to go to the bathroom, be right up with you guys’ because I don’t want anyone looking at me me while I slowly climb my painful way upstairs. So I always make up an excuse to be the last one to go up, and alone.”
  21. “I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.”
  22. “I take a few minutes every so often when I’m out, like when I go to the bathroom or pop to the kitchen, and just sit and gather myself. Allow myself to feel the exhaustion and pain then breathe and go back in.”

Funny ☺But Sad 😓

This appeared on my Facebook feed so I reproduce, with permission (and some extra cartoons) for your (bitter-sweet) amusement

Top 10 Funny Living with Fibro Factors:

 

1. Hair dryers that look normal but actually weigh 3 tonnes when you go to dry your hair.

2. Having to allow extra time to cool off after showering because you’re now sweating bullets.

258. sleeping together

3. Sleeping under lots of blankets because you’re freezing but still needing the fan on because you are also too hot.

4. Thinking you were having a good day until you have to walk more than 8 steps and discover someone poured concrete into your legs when you weren’t looking

146. best exercise

 

304. smoke and mirrors

5. Trying not to get frustrated when people say “I thought you were getting better”…it’s a chronic condition, there is no better just good days, bad days and the ever dreaded flares.

6. Forgetting your children’s names…or why you came into the room…or how to drive…on brain fog days.

119. fibro fog

 

chronic comic 174

7. Trying to decide whether to be honest or just keep it simple when someone asks how you’re doing.

8. Mentally trying to weigh up if you are whinging too much about your fibro or not speaking up enough about what you are going through. Either way most people don’t understand.

85.second opinion

 

86. crawl into bed

9. Feeling exhausted all the time even when you get enough sleep OR not being able to sleep because pain is too much. Either way you’re still tired.

10. Knowing that you have to laugh at the absurdity of this condition because fibro has already stolen too many tears.

231. pleaSURES

 

100.1 pain in the ass

No-No to Nana Naps

According to a study published in BMC Musculoskeletal Disorders, when patients with FM nap during the day to cope with their symptoms, their symptom severity may actually increase. 75. good in bedA team of researchers from New Zealand, United Kingdom, The Netherlands, and Germany gathered data from an online questionnaire and noticed that frequent and longer naps taken during the day corresponded to greater symptom severity.

“Given the common use of daytime napping in people with fibromyalgia, evidence-based guidelines on the use of daytime napping in people with chronic pain are urgently needed,” stated the authors.

198. tiredThe questionnaire gathered data on age, sex, and other population descriptors, as well as measures to assess daytime napping behaviour. From this data, the researchers divided the patients into two categories: those who regularly napped and those who napped less frequently than once a day. The majority of daily nappers did so during the afternoon without meaning to take a nap. Only 22.5% of participants indicated that they plan their daytime naps. Generally, patients nap because they are tired or exhausted, do not feel well, need to make up for a bad night’s sleep, have a headache, or are experiencing pain.

FYI: Younger patients napped more than older patients during the day, both in frequency and in duration.

Although napping makes patients feel better at the time, this study suggests that overall symptom severity may worsen as naps become longer and more frequent.

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How are You?

Hello. How are you?

chronic comic 174

No…really.

I’m asking. I don’t want to hear that you’re ‘fine’ because you’re being polite; because you think I don’t care; because you’re used to most people not caring. So…how are you? You can actually tell me in the comments below because I’m going to tell you how I’m feeling…

I am so sad (yes, I’m depressed and I constantly get angry comments here for referring to it as sadness…but that’s what it is to me – it’s a deep, deep pool of sadness that I cannot swim out from). It seems that, suddenly, the people who I have chosen to surround myself with, no longer care how (or even, if) I answer the ‘How are You?’ question.

And, the worst part is that they don’t have to ask. They all know me well enough to see that there is something very wrong…they are just choosing not to delve further.

My sadness comes from asking myself why – they’re sick of hearing about my woes? they want to have a life beyond the lounge-room? they no longer believe in my worth? they no longer care?

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International Day of Yoga

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Yoga is a 5,000-year-old physical, mental and spiritual practice, with its origin in India, which aims to transform both body and mind.

international-yoga-day-logo-300x429On December 11 in 2014, the United Nations General Assembly declared June 21 as the International Day of Yoga. The declaration came after the call for the adoption of 21 June as International Day of Yoga by Honourable Indian Prime Minister, Mr. Narendra Modi during his address to the UN General Assembly on September 27, 2014 wherein he stated: “Yoga is an invaluable gift of India’s ancient tradition. It embodies unity of mind and body; thought and action; restraint and fulfilment; harmony between man and nature; a holistic approach to health and well-being. It is not about exercise but to discover the sense of oneness with yourself, the world and the nature.” In suggesting June 21, which is the Summer Solstice, as the International Day of Yoga, Mr. Narendra Modi had said that, “the date is the longest day of the year in the Northern Hemisphere and has special significance in many parts of the world.”

Yogi and mystic, Sadhguru notes the importance of this day in the yogic tradition: “On the day of the summer solstice, Adiyogi [the first yogi] turned south and first set his eyes on the Saptarishis or Seven Sages, who were his first disciples to carry the science of yoga to many parts of the world. It is wonderful that June 21 marks this momentous event in the history of humanity.”

FYI: 175 nations, including USA, Canada and China co-sponsored the resolution. It had the highest number of co-sponsors ever for any UNGA Resolution of such a nature.

95. yogaWhat better reason to do you need to give yoga a try? Tomorrow?

As most of us know (whether we do it or not!), exercise is an important part of managing fibromyalgia symptoms. Staying physically active can relieve pain, stress, and anxiety. The key is to start slowly. Begin with stretching and low-impact activities, such as walking, swimming or other water exercises, or bicycling. Low-impact aerobic exercises such as yoga can also be helpful. (Remember: prior to starting any exercise routine, or if you want to increase the intensity of your exercise, talk with your doctor.)

Now, yoga isn’t for everyone but exercise is! So why is exercise important for fibromyalgia?

  • Studies show that exercise helps restore the body’s neuro-chemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins. Endorphins help to reduce anxiety, stress, and depression.
  • Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. While only a small percentage of all serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods. For those who feel stressed out frequently, exercise will help to desensitize your body to stress, as an increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels.
  • A study, at the Georgetown University Medical Centre in Washington, D.C., suggests that exercise may improve memory in women with FM. Decreased brain activity, due to aerobic exercise, suggests that the brain is working more efficiently. The researchers suggest that one of the benefits of exercise for fibromyalgia patients is that it may streamline brain functioning. It may help free up brain resources involved in perceiving pain and improve its ability to hold on to new information. The findings may help explain why regular exercise decreases pain and tenderness and improves brain function in people with fibromyalgia. (These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.)

What Are Other Benefits of Exercise for Those With Fibromyalgia?

chronic comic 163Regular exercise benefits people with fibromyalgia by doing the following:

  • burning calories and making weight control easier
  • giving range-of-motion to painful muscles and joints
  • improving a person’s outlook on life
  • improving quality of sleep
  • improving one’s sense of well-being
  • increasing aerobic capacity
  • improving cardiovascular health
  • increasing energy
  • placing the responsibility of healing in the hands of the patient
  • reducing anxiety levels and depression
  • relieving stress associated with a chronic disease
  • stimulating growth hormone secretion
  • stimulating the secretion of endorphins or “happy hormones”
  • strengthening bones
  • strengthening muscles
  • relieving pain

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Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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