Living with chronic disease is all about supportive relationships


Is RA worse than OA?

I recently received an email from a husband who was concerned about his wife who was diagnosed with rheumatoid arthritis (RA).  He wondered if it was both to have both RA and osteoarthritis and which one of the two was worst.

Here is my response:

I also have RA and I was diagnosed about three years ago. First, Rheumatoid Arthritis (RA) is worse than osteoarthritis (OA) and it is not usual for someone to have both conditions. Both RA and OA are serious but they have both have the possibility of being manageable. RA can also be very serious.  This is because RA is a long term disease that leads to inflammation of the joints and surrounding tissues.  It can also affect the organs.

The cause of RA is not known but infection, genes, and hormones are believed to be contributors to the disease.  It is an autoimmune disease where the body’s immune system attacks itself.  A normal immune system fights off infections and viruses but with autoimmune diseases, the body attacks healthy cells because it mistakes them for unhealthy ones.   RA can happen at any age and women are more often affected than men.

Doctors believe that RA affects joints on both sides equally but that there are cases where one side is affected and the other not, or one side of the body is worse. However, at some point, it does eventually affect both sides.  The wrists, fingers, knees, feet, and ankles are most commonly but other joints can be affected. The course and the severity differs of the disease differs from person to person.

The disease often begins slowly with symptoms similar to those in other illnesses.  These include fatigue, loss of appetite, low grade fever, swollen glands, and weakness.    Eventually, joint pain appears.  This includes morning stiffness that lasts more than one hour. Joints can be warm, tender and stiff when not used for as little as an hour.  Joints are often swollen and feel warm and boggy/spongy to touch.  Over time, joints can lose range of motion and become deformed.

Other symptoms include chest pain when taking a breath (pleurisy), eye burning, itching, dryness, and discharge, nodules under skin (these indicate that the disease is severe), and numbness, tingling, or burning in hands and feet.  Joint destruction may happen within 1 to 2 years after the disease appears.

RA usually requires lifelong treatment including medications, physical therapy, exercises, education and possibly surgery.  Early and aggressive treatment for RA can delay joint destruction.  Medications include diseasing modifying drugs, anti-inflammatory medications, anti-malarial drugs, corticosteroids, and biologic agents.

Again, the course of RA differs from person to person.  For some patients, the disease becomes less aggressive over time and symptoms improve.  Other people develop a more severe form the disease.  People with a rheumatoid factor, an anti-CCP antibody, or subcutaneous nodules seem to develop a more severe form of the disease.  Persons who develop the disease at younger ages seem to get worse more quickly.  Treatment has improved in the last 10 years.  Many people continue to work fulltime.  I am not saying that life with RA is not a painful – it is a very painful disease and it can make life difficult.  After several years, ten percent of persons with RA are severely disabled and unable to do simple daily tasks such as washing, dressing, and eating.

RA can cause severe complications for some people.  It is not only a disease of joint destruction.  It can also involve all organs. More severe problems include anemia due to failure of the bone marrow to produce enough new blood cells, damage to lungs, injury to the spinal cord when the cervical spine becomes unstable from the RA, Rheumatoid vasculitis (inflammation of the blood vessels), which can lead to skin ulcers and infections, bleeding stomach ulcers, and nerve problems that cause pain, numbness, and swelling and inflammation of the outer lining of the heart (percarditis) and the heart muscle (mycarditis).   Both percarditis and mycarditis lead to congestive heart failure.   Sjogen’s syndrome and fibromyalgia are secondary conditions that come after an RA diagnosis and further aggravate RA symptoms.   Moreover, RA treatments are strong and cause some major side effects.

It is very possible for RA patients to have normal lives – not easy, but very possible.  It depends on the degree to which RA affects a person’s daily activities and how well that person can hope.  Coping strategies are important but it takes time to find ways that work for each person.  There is no one solution for all approach with RA.  Patients must take control of their health, work their doctors, and work on a trial and error approach to find what best works for them.  It is also important to know limits: i.e., resting when you are tired because RA can make a person prone to fatigue and muscle weakness.  It is also important to connect with others and to make time for oneself.

Why I Advocate

One of things I often wonder about is whether spouses and significant others actually understand the physical and emotional tolls that that RA and other chronic pain bring to the sufferer and their relationships.   As sufferers, we all know that chronic disease can destroy a marriage, a relationship or a friendship.   We all have come across people that just don’t understand.  It is one of the reasons I keep going even one I can’t because I don’t really have time to deal with people who just don’t get it.  In fact, I am not alone here.  We are all faced with the pressure of appearing healthy when we are not.

I don’t want RA or fibromyalgia to limit me but they are both pretty serious and painful diseases.  They affect every aspect my life.  I have lost my share of friendships and other relationships as a result of my health.  As a result, I have learned to take a proactive view on life with these conditions.  I am not alone and one thing I know that is that there are people in my life who actually are willing to make the effort to understand.  Moreover, I have learned to forget about the ones that don’t.

While for me, it was not that easy, I wish for others that relationships don’t end because of disease.  I wish that spouses, significant others, family members and friends would make the effort to understand.  That is why I advocate – not just for me but for all of you who need support and understanding. No one has to go at this alone.  In addition, I advocate because I want to set an example for my children that relationships are not just about convenience but about truly being there for the people we love.

My goals didn’t seem so clear in the beginning but they become so much clearer as my watched my brother struggle with a terminal illness.  I saw what it did to him on both an emotional and a physical level and all I could do was stand by and hold his hand.  While I know that it may have not been enough, it was enough for him so that he didn’t feel alone.  Loneliness when you are chronically or terminally ill is a powerful thing.  So, for those of you are fortunate enough to be healthy, know that support is the greatest gift you can offer. It means the difference between happiness and sadness. It is what love is really and truly about.

I never knew how important love was until my siblings and I held on to one another through my brother’s illness and his passing.   Love means you won’t have regrets.  My relationship with my brother wasn’t as strong or as close as it should have been but he became sick, it was like we knew what we had to do so that we wouldn’t have regrets.  While I wished that he and I had a better relationship before he became sick, we made up for it the last two months of his life.  I am very grateful to have had that chance and I know that so many don’t.  Supporting those you love, especially when they are ill, is the best gift you can offer to them and that you can offer to yourself.

***If you a question related to RA, Fibro or chronic illness you would like me to answer, please feel free to send me an email to livingit-lovingit@live.com and I would be happy to answer your question.  Be sure to put “Blog Question” in the subject line so that it does not end up in my junk folder.

 

What do you do about misdiagnoses?


I recently received an email from someone who suspects they may have fibromyalgia but after visiting half a dozen doctors for the last three years, she is conflicted and wonders whether it may in fact be in her head. She tells me that she “hurts all over and no one knows why.”  She wants to know if she should give up on trying to find a diagnosis and simply accept “that it is all in her head.”  She has been misdiagnosed over and over with IBS, migraines, anxiety, panic attacks, etc.   She wants know what she can do to get a proper diagnosis or whether she should just give up.

What doctors know?

It took me ten years to finally get a fibromyalgia diagnosis but before I discuss my experience, I want to talk about the process of getting a fibromyalgia diagnosis. Fibromyalgia is a syndrome and the diagnosis is a process of exclusion.  No doctor will give a patient a fibromyalgia diagnosis before ruling out a host of other conditions with similar symptoms such as infections, rheumatoid arthritis or lupus. Doctors will order labs and imaging tests. Rheumatologists generally diagnosis and treat fibromyalgia and the American College of Rheumatology was the first to determine criteria for the condition in 1990 and has only recently updated that criteria to allow doctors a better understanding of fibromyalgia.

Fibromyalgia is often misdiagnosed as something else usually depression or arthritis.  It has even been diagnosed as Chronic Fatigue Syndrome.  It can take several years and half a dozen doctors to get a diagnosis.  In addition, there will be misdiagnoses and when treatments don’t work, doctors know the diagnosis is wrong.   If arthritis is ruled out, fibromyalgia becomes a great possibility but if it exists, then the fibromyalgia may be more difficult to get.

My Experience

In 1998, I was living in Jerusalem, Israel and all I knew is that I was sick all the time.  I went to see an immunologist at a highly accredited hospital and looked at my labs and told me “nothing” was wrong with me, and that he would be happy to refer me to a therapist for further evaluation. That was probably the forth or fifth doctor that I saw for whatever was going on inside of me and I decided my quest for answers was over.

My first marriage ended in 2000 as a result of my health, among other things, and my ex-husband called me “defective.”  When I left, I had to leave my three daughters behind and only took my infant son.  That was ten years ago and when I filed for divorce, I tried to get custody of my daughters and my ex-husband’s lawyers told that I did not have a chance and that I would lose my son as well because of my so-called “mental instability” of which they had documentation of so I gave up trying to get custody of my daughters because my mysterious illness turned me into a mentally ill person.

In mid-2000, I was back in the states and trying to find answers. Because I was going through a messy divorce, it was suggested that my symptoms were a result of depression, stress and anxiety. I was prescribed Paxil and it only made me sicker.  Then Prozac, and after my symptoms continued to get worse, I weaned myself off and decided that “I was not crazy.”  In 2002, my health was getting worse and I will even nod off while I was driving.  No matter how much I slept, I was never rested.  I was dealing with nausea, dizziness, headaches, and extreme fatigue on a daily basis.  One day, I was sitting in the passenger seat of my sister’s car when my chest started to hurt and my right arm went completely numb – the first thing that came to my mind was a stroke or a heart attack.  Here I was at age 26, at a size 10 so I was not overweight, and I thought I was having a stroke or heart attack.  My sister rushed me to the emergency room.  A couple hours and several tests later, I was told nothing was wrong and sent home with a referral to a behavioral specialist.  No one wanted to hear about my laundry list of symptoms because they all thought I was crazy.

Towards the middle of 2003, I realized I needed to clear my head and I couldn’t do it near my family so I moved to a rural area of southeast Pennsylvania.  I didn’t even give my mother my address or phone number.  I wanted a clean break and I wanted to figure out whether what I was feeling was related to stress and anxiety or real.  Hundreds of miles from every one we knew, my son (three at the time) and I started a new life.  My health did not improve but it became clear to me that what was going on inside of me was not in my head.  I was transferred from doctor to doctor because no one knew what wrong with me.  This became the norm for the next few years.  Everyone was diagnosing my symptoms and no one was really figuring out what was causing all these symptoms.

In mid-2006, I had just been laid off from my job and was in the process of finding a new job when I would have what seemed like gallbladder attacks. After several trips to the ER and tests that found, yet again, nothing, I was at my wits end. I decided I needed to see a new doctor and start over because I knew I wasn’t crazy.  He was fairly new doctor in his early 30s and when he walked in and asked what was going on, I started to cry.  I told him that this had been the norm for me for the last eight years and no one could figure out what was wrong with me.  I was tried of being sick and in pain all the time and I just wanted answers.  After more tests that concluded nothing, I was sent in for a nuclear medicine scan which showed that my gallbladder want not functioning so I was scheduled for surgery in early September, only a couple weeks after I started a new job. My journey did not end there.  I never got better after healing from my surgery which took me many months and my all over body pain got worse.  I was sick all the time and it was one infection after the other.

In late 2007, I was remarried, moved back to my home town, had a new job with a great law firm and was pregnant.  While my health was still bad, I was feeling optimistic.  While I was pregnant, my pain symptoms had dissipated but I had morning sickness all throughout my pregnancy.  Despite that, I actually felt better than I had felt in a long time.   That did not last long because only days after my son was born, I woke up to every joint and muscle in my body swelled and my hands were curled into fists. What I did not know was that my life was about to change.

A week later, I was in to see my family doctor who told me she suspected rheumatoid arthritis and after lab work, she called to confirm her diagnosis.  Here I was a new mother, 32 years old, and I was looking at what I thought was a death sentence.  I picked up the phone and called my sister who came down and stayed with me until the baby was four months old.  If not for her, I am not sure what I could have done – I was barely able to hold a fork let along take care of a newborn.  My first trip to the rheumatologist confirmed fibromyalgia in addition to RA.

Never Giving Up

I don’t remember the exact date I was diagnosed, the onset of their symptoms and even what triggered the disease.  All I know is that for ten years, I visited doctors as my symptoms continued to grow.  I would tell them that I was hurting, I was exhausted and that sometimes, I could not get out of bed.   They would look me up and down like I was crazy and some would try to diagnose my symptoms.  However, I never stopped searching and even though I was deterred when life forced me to be, eventually, I would go back to my quest for answers.  All I ever wanted to hear in ten years that someone believed me and it took ten years and a lot of pain and suffering to find someone who did.

When I got my diagnoses, I was emotional mess but I learned that I wasn’t alone.  I learned through the experiences of others how to get my life back.  I also made a decision to tell my story so that others would learn from my experience.  I know that I have been blessed to finally have answers and learn from that experience.  I went through a lot to find answers but I am grateful that I did.  I learned to be a fighter and a survivor and I fight with everything that I got and more.  I also take each day as it comes and do what the best that I can when I can.  I am blessed with a wonderful family and friends who support me but they don’t always understand. Actually, they rarely understand but they try and, because of that, I fight.

So to my friend searching for answers…

What I can say is don’t give up and keep looking for answers.  Find doctors who will listen.  Trust yourself and your instincts.  Learn who you can confide in and who you can’t and keep believing that the answers will come.  Write your symptoms down daily so that you can show these to your doctor.  If you doctor doesn’t listen, then find a doctor who will listen.  My journey for answers took nearly ten years but I hope yours doesn’t and I hope my experience helps you. Unless you stand up for yourself and advocate for yourself, you are not going to find those answers so please do not give up.

Parenting and Chronic Pain


When I check the searches to my site, this one stands out: How Can I be a Good Mother When I Suffer from Chronic Pain? This is a question that I ask myself almost daily but I realize that I am not alone here. There are thousands and even millions of young mothers trying to make sense of motherhood and chronic pain and while they shouldn’t really go together, they often do. I used to believe that we were a minority group but it turns out that there are millions who parents out there who live with the reality of chronic pain on a daily basis.

 

Parenting is hard but parenting with you live with chronic pain is really hard. Parenting means you draw attention from yourself and give it to your children because they need you. That is really hard when you are in pain daily but the sad reality is that you are not the only one suffering from the affects of your pain. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about pain and while this is difficult, it is a necessity to make your child feel at ease. 

 

I am a mother to a toddler and a preteen. My toddler understands that mommy hurts and I find that on the days that I am most stressed out with pain, he knows because he starts to act out. For example, the other night, I had an ice pack under neck because I was having excruciating pain in my neck and shoulder muscles. The pain was so bad that I was near tears. My toddler looked at me with the saddest eyes, laid down next to me and wanted to be held. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my toddler, told him that mommy’s ouchie would go away soon and that I would play when him when the ouchie was gone. 

 

My ten year old has questions about how the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about our schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. For me, my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true. 

 

I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and never will. I know that they know honesty and openness and they know how to be caring and sensitive. The best a parent can do is share their good days with their children because those are days that help them get through when bad pain days come. It is also important that parents stay on top of their children’s moods and behaviors because children are equally affected when a parent suffers from chronic pain. 

 

I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I often find myself irritable and crabby and it does not make me a pleasant person. That is why I have learned the importance of being honest with my children and not making promises that I cannot keep. Hiding my pain is not good for any of us. I also see my ten year old trying to turn into my caregiver and that is where I have to draw the line and I think that is where every parent has to draw the line. As parents, we need to be the responsible parties for our health and for our children’s security. That means we have to continue to be parents with chronic pain who pay particular attention to how our children are affected.

Arthritis in the Bedroom


Sex as a Taboo Topic

When I asked to discuss this topic, I was a bit hesitant because I was not sure how the readers of this blog would respond. Moreover, I generally offer my personal experience when asked to write about a particular topic, and I was not prepared to do so in this instance. I did eventually decide that this was a topic worth discussing because there is so many people who feel like arthritis and chronic pain have no place in the bedroom, in particular those of us who suffer.
I also took into consideration that society looks the discussion of sex as taboo and talking about how it pertains to chronic pain is similar to opening Pandora’s Box. In general, people do not want to discuss sexuality because we do not want to talk about what happens behind closed doors. This even applies to couples in meaningful relationships because even they hide their feelings on this subject from each other.

I debated the subject and decided to forget the taboo and go ahead to discuss the effect that arthritis and chronic pain have on sexuality. After all, what do I have to lose?

What is Intimacy?
We all know what intimacy requires and includes. Ideally, it includes love. It can also include romance. Two additional critical components are mood and setting (hopefully, setting is ideal). Last, intimacy includes the act, with positions and physical attributes.

In addition to the requirements of intimacy, we can also look at why intimacy fails and why breakups and divorces occur. In looking at the reasons for failure, we see that there are challenges to successful relationships and that once successful relationships can fail. Moreover, when we consider the reasons for failure, we often forget that, in addition to emotional factors, physical factors can play a part in the success or failure of a relationship. Emotional factors are a given, as are intimate issues. Physical factors can include arthritis and chronic pain conditions.

Intimacy and Arthritis

The problems faced by arthritis sufferers are both emotional and physical. Emotional factors include self-doubt and poor body image. Physical factors include joint pain and other symptoms that are characteristic of a person’s specific arthritis condition. These concerns not only affect the patient, but they also affect that person’s partner as well. Barriers include physical pain, the ability to perform because of joint pain or other symptoms, expectations and personal needs- both sexual and emotional. This complete consensus can result into strong complications in a relationship.

What it all comes down to is that sex is supposed to be enjoyable, but for arthritis sufferers, it can be difficult. In additional to physical pain, psychological factors come into play. The nature of a couple’s sexual lifestyle prior to the diagnosis further complicates the situation. This can result into resentment, worry and fear for both partners.
The Effect of Arthritis on Sexual Intimacy

The effects of arthritis pain, stiffness, fatigue, lack of mobility, and swelled joints can make sex difficult, painful, and unappealing. When arthritis affects your back, your knees, your hips, ankles, etc., sex cannot possibly be enjoyable. In addition, side effects of medications can diminish sexual desire and cause other problems such as vaginal dryness, erectile dysfunction, inability to orgasm, and fatigue that also lessen the desire to be intimate. Then, as the sufferer, you feel sexually unattractive and, as a result, you cannot feel relaxed enough to enjoy the actual act. These feelings bring with them anxiety and stress and further worsen our symptoms.

When you sufferer from arthritis, your partner may not necessarily be aware of the changes happening to your body – both physical and emotional. Your partner cannot understand your pain levels, nor can he or she know whether you are using pain levels as an excuse not to be intimate or whether your excuses are legit. All of these factors can lead to the failure of a relationship when the real and best answer comes down to communication.
What can we do?
Change Expectations

Sexual intimacy is not just about achieving an orgasm or the act itself. If we can change this perception, we can change our expectations. Taking a slower approach to intimacy works best for partners when they share mutual respect, care, trust and love for each other. Moreover, barriers can be approached through communication on what is comfortable and what is not. Arthritis does not necessarily affect sexual organs but the physical effects of the disease can make intercourse painful. Moreover, emotions come into play because of those physical aspects. Therefore, couples must address the emotional aspects, as well as the physical, openly and honestly.

Communicate

Expressing fears and concerns allows the partner without arthritis to support and reassure. In addition, talking about fears will allow the arthritis sufferer to let go. What the arthritis sufferer must take in mind is that his or her fears can be viewed as rejection and vice versa applies. Rejection turns into distance and emotional breakdown of the relationship.

If these topics are sensitive initially, writing a letter to a partner to express fears and concerns can be another approach, but the next step would be to talk openly about what has been written down.

Sexual Wellbeing and Getting Creative

Psychological wellbeing and social support can contribute to a fulfilling sexual life. By learning to separate the emotional aspects of arthritis and working creatively to deal with the physical aspects, couples can take a more practical approach in dealing with changes brought about by arthritis and in turn, make accommodations for one another when dealing sexual intimacy.

Changing sexual habits and planning is the first place a couple can start in order to continue to have a fulfilling sex life. For example, if the arthritis sufferer wakes up stiff and in pain in the morning, sexual intercourse can be saved for later in the day or at night prior to bedtime. If being resting helps, perhaps the arthritis sufferer can a nap prior rather than avoiding the act altogether simply because of factors that contribute to the inability to perform. If muscles and joint become tense during sex, then a perhaps considering a warm bath to sooth muscles prior to sexual intimacy may help to ease those tensions. Other considerations can include taking pain medications prior so that its maximum effects happens during sex, using massage to help ease muscles and joints as foreplay, using pillows or rolled sheets to support joints, or even pacing yourself to conserve your energy for you and your partner. Vaginal dryness can be addressed by using over the counter lubricant. Other more difficult issues, such as erectile dysfunction, may require a medical perspective. What it all comes down to is that couples have to be willing to work together in order to allow for intimacy to be fulfilling for both partners.
Sexual intimacy should not make the disease worse. By focusing on the physical and emotional aspects rather than intercourse and orgasm, being creative, and open and honest with each another, couples affected by arthritis can continue to enjoy sex and find satisfaction with intimacy.

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If you like have a question related to rheumatoid arthritis or fibromyalgia that you would like me to answer, please feel free to either leave it in a comment box anytime (leave your email/website link so I can notify you when it is answered) or send me an email to lanab2005@msn.com. I will do my best to answer your question. See Disclaimer.

Natural Healing- How can I minimize my symptoms – Part 4


In response to a question by a reader of this blog, I have in the last several days looked into natural methods of healing for those of us living with chronic illness. These approaches can be in conjunction with a medicinal regime or as an alternative. Now at our part 4, the final part of this series of posts, I am going to look at positive thinking and taking control of your health.

Please be sure to check out the other blog posts in this series on natural healing.
Part 1 I wrote about educating our selves about our conditions, having a desire to make change happen, and taking in consideration what it is we need to heal and how.
Part 2  I discussed nutrition, supplements, and exercise and how their combination is important to over all success towards good health.
Part 3 - I looked at stress reduction and adequate sleep. 


 Positive thinking – Whistling and Skipping


Since my diagnoses, I have in many posts touched on the idea of positive thinking by reflecting upon having hope , the importance of feeling positive , touching on the idea of understanding ourselves, and having a sense of humor despite chronic illness. All of these are ingredients are essential to long term health success because the word chronic means “long-lasting,” and our illnesses, in most cases, are permanent. Now, I am not talking about whistling and skipping here or putting on a false smile; I am talking about making a choice to take a positive approach on life despite feeling not so positive on a daily basis.

A positive attitude is the greatest gift you can offer yourself when it comes to a life of chronic illness. Developing that positive attitude means maintaining an emotional balance during the course of illness, being open minded towards treatment options, and dealing successfully with interpersonal relationships. Self image also comes into play and if that self imagine is not good then positive attitude is impossible, and in turn, that has an adverse effect on a person’s health. Other emotions, as chronic illness sufferers, include anger, grief, fear, and loss of control and while these emotions are justified, they can be self consuming if we let them. Moreover, and in turn, they affect the two major aspects of successfully living with chronic illness: treatment and personal relationships. We need to be willing to take an open-minded approach towards treatment and be willing maintain personal relationships because both play a major part of good health and any chance of attaining overall better health.

Positive attitudes affect our emotional and physical well being. Moreover, the importance of developing positive mental thinking is essential to the healing process. From personal experience I know that positive thinking and chronic pain do not necessarily go hand and hand. However, in my journey, I have learned that the most important thing about healing and feeling better on a daily basis is the attitude that I have. There are days where I feel like I can conquer the world and there are days where I just do not want to get out of bed. I have learned that even the bad days count because on the bad days, I have to remind myself to “just suck it up and move on,” and I do. I remind myself the importance of counting my blessings and not sweating the small stuff.

I understand that my bad days will pass because they always do and because I do have good days. I find strength in prayer, mediation, and relaxation. I spend less time focusing on the pain and more time living my life. I have also learned that I have a choice to suffer alone but I am not required to. I find comfort and support when I need it, and I ask for help instead of taking challenges alone. I have learned that I have limitations and I cannot always take chances alone. I have accepted that there are things in my life that I no longer control but I don’t have to dwell on them. Instead, I can focus on things that I can control.

I have made a choice to be positive despite my conditions and while I don’t have control of my physical health, I have control of my responses, my feelings and the outcomes. I have also learned that being positive is not just about me. It is about everyone I come across everyday, including my family, my coworkers and even complete strangers. Deciding to take on a positive approach despite limitations takes practice and patience. It is something that teaches you resilience, planning, and even how to whistle and skip at the same time.


Taking Control – You are responsible for your health

Ten years of trying to find a diagnosis taught me two things: how to advocate for myself and how important advocating for myself is. The advice I always give to newly diagnosed person is to “educate yourself and to advocate for yourself,” because no one else is going to do this for you. Chronic illness is serious problem and if you do not believe how serious it is, you will not be motivated to manage your illness, educate yourself, and to work successfully with your medical providers. These things all entail your willingness to make lifestyle changes and taking your prescribed medications to be as healthy as possible. If you are not willing to take care of your body, you will be looking at some serious health complications in the future. While your excuses are justified because chronic illness is overwhelming and can lead a sufferer to be helpless, it does not change the fact that you still have to be willing to take responsibility of your health.

Taking responsibility of your health means managing your own care and taking your medications as prescribed. If you are not willing to do that, then your medical providers and family and friends have no responsibility towards you. They cannot support you or help you to change your attitude or behavior so in a way, you hinder their ability to do their jobs or provide a supporting role. Only you can take charge of your health and you and your doctor cannot be partners in your healthcare if you are not willing to take the first step. Once you are willing to take the initiative, you can educate yourself about your conditions and the treatment options out there. Discuss with your doctor the things you have learned, your feelings toward your health and those options, and work with your doctor towards a treatment plan that is right for you.

As part of taking responsibility, you also must learn to seek support. No one knows your feelings, your actions and your health better than you and no one knows how all these things work together better than do you. Therefore, it is your responsibility to ask for help when you need it and to learn to accept support. There will always be people willing to help you be successful but no one will know you need that support if you do not ask for it. That support can come from family and friends, as well as your doctor or a support group of people who also suffer from your condition.

Probably the most important aspect of taking responsibility of your health is changing your behavior and if you are not willing to do that, you are not willing to be successful. Of course, our illnesses make us feel helpless but we should let that hinder us from being successful and working to find out everything we can about our conditions, being open with our doctors about our concerns, and following through on our goals towards better health, including diet, exercise, medication and supplements, stress management, and sleep. This willingness to take responsibility will lead to better health in the short and long term.

Thanks Kelly for posting this question. You are free to post comments related to all four posts or any of the four. It definitely has been a meaningful topic to write about. I was also asked to discuss personal relationships and intimacy as it relates to chronic illness so look for that post in a week or so.

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If you like have a question related to rheumatoid arthritis or fibromyalgia that you would like me to answer, please feel free to either leave it in a comment box anytime (leave your email/website link so I can notify you when it is answered) or send me an email to lanab2005@msn.com. I will do my best to answer your question. See Disclaimer.

Natural Healing- How can I minimize my symptoms – Part 3


In response to a question by a reader of this blog, I looked into natural methods of healing for those of us living with chronic illness. In particular, I incorporated that approach towards fibromyalgia but it can also apply to rheumatoid arthritis, other autoimmune diseases and various chronic illnesses. These approaches can be in conjunction with a medicinal regime or as an alternative.

While I am for a non-medicinal approach for fibromyalgia, I am not sure I am for rheumatoid arthritis. A natural approach has worked for others with RA, but I am hesitant to take that route. For one, I was delayed on my Humira injections as result of errors at my doctor’s office. I only today was able to pick up a new prescription and since I am not home to receive it, I probably will not be able to get my injection until Saturday which means, I will be three weeks behind and I am already in a lot of physical pain. I have made a lot of healthy choices including supplements to further my health, but no matter how many changes I incorporate, in addition to medication, the pain free days are probably two days in one month. What I do know, however, is that I feel better than I did a year ago with my conditions and I know a lot of that has to do with the lifestyle changes I have made including diet, supplements and exercise.

In part 1 of Natural Healing- How I can I minimize my symptoms, I wrote about educating our selves about our conditions, having a desire to make change happen, and taking in consideration what it is we need to heal and how. In part 2, we discussed nutrition, supplements, and exercise and how their combination is important to over all success towards good health.

Now, I am going to discuss stress reduction and adequate sleep. My goal was to also include positive thinking and taking control of your health in this post but it turned out to be lengthier than I thought so there will have to be a part 4 on positive thinking and taking control of your health.

Stress Reduction – A Stress Induced Coma?

By no means is my life easy. I often refer to my life as a stressed induced coma where I sleepwalk through my chaotic life. I know the effect of stress on my conditions and my pain levels. I try to be aware of that and I work to remind myself what triggers flare ups and increased pain.

Stress is linked to fibromyalgia pain. It is also linked to other chronic pain illnesses, including rheumatoid arthritis. For many people, it is believed that a stressful event triggers fibromyalgia. The same may be true for any of the 100 autoimmune diseases out there. Often FMS and autoimmune diseases show up after a serious illness or a traumatic event. Some people believe that FMS is linked to genetics and it is often misdiagnosed because of its correlation with stress.

New research has found that FMS is a disorder of the central nervous system wherein the pain sensing nerves are extremely sensitive or the brain itself is sensitive to pain. Further, FMS sufferers have poor functioning of pituitary and adrenal glands, and because of that, the body’s response to stress is overexerted. Researchers have not been able to determine how pain sensitivities and abnormal response to stress are related but they do know that people with FMS experience more pain when they are stressed.

I believe that just having FMS is stressful as is with any other chronic pain condition. You are dealing on ongoing pain, fatigue and mental disturbances and you are not able to live your life as you would if you were not sick. This, in itself, is stressful. Moreover, people in you life don’t actually understand how stressful living chronic illness is and how stressful lifestyle changes can be. Therefore, stress reduction has to be an important part of pain and life management.

What I do now is that when I am less stressed, I experience less pain and fatigue from both my conditions. Here are some suggestions that I have come across in my research.

• Stress management includes self care by eating a nutritious diet and getting the right type and amount of exercise, sleeping well and taking relaxation time.

• You should also be aware of you body and learn to cope with pain, rather than to ignore it. If you learn how your body works, you can be aware of the triggers of your flares and respond appropriately whether through exercise, therapy or relaxation.

• You have to change your perceptions on your illness, your life and response to all these things. This takes time but it is not impossible to learn to not sweat the small stuff.

• You can also keep a stress journal as a tool to help you indentify what triggers your stress and how to avoid these triggers. The journal also gives you an opportunity to reflect on how you can better respond to situations in the future.

• You can also practice some stress management techniques, such as mediation, visualization and deep breathing when you feel stressed because this can decrease the neurochemicals circulating in your body. In turn, stress and pain is reduced.

• Physical therapy is also a great stress reducer because it helps to decrease muscle tension and stress and minimizes pain.

• You can talk to a counselor who specializes in stress and pain management. That person can teach you additional ways to manage stressful events in your life.

Adequate Sleep – One more hour please

My husband loves to sleep and nothing in the world takes him away from his sleep. I tell him that this is the reason he is healthier than I am. I believe that one more hour of sleep would greatly benefit me, but because of the person I am, I am constantly running in multiple directions. My husband says I am going to run into a brick wall if I don’t slow down and he is probably right. I often tease him and tell him if I only could get one hour of the sleep he gets, I am would be less grouchy and easier to put up with.

Sleep is something that I have the most difficulty adhering to when it comes to my health and as I write this section of the post, I feel like a hypocrite because sleep and I aren’t actually the best of friends. Before my diagnoses, I was living on six hours of sleep at night. If I was lucky, I would get seven or eight and that worked when because I was focusing on school, my career and my family. But then, I got pregnant and shortly after delivering, I was diagnosed with rheumatoid arthritis and fibromyalgia. Then, a good night’s sleep became difficult with so much happening in my life and the pain and stress were in addition to being a new mother. Most people with fibromyalgia complain that they have trouble sleeping and no matter how much sleep they get, they feel restless.

Sleep problems that are associated with fibromyalgia include insomnia, difficulty failing asleep and frequent awakening throughout the night. Restless leg syndrome and sleep apnea are also associated with fibromyalgia. People with FMS say that they wake up day after day feeling exhausted and having no energy. Usually, they are more tired in the morning and try to nap during the day to ease fatigue. In addition, it is not usual for those with FMS to have trouble concentrating because of a condition called “fibro fog.” Some research shows that the constant pain of FMS causes sleep interruption. Other research shows that there evidence that FMS is related to abnormality of deep sleep.

To get better quality sleep, a FMS or chronic pain suffer should consider how sleep affects their symptoms. These recommendations come from WebMD.

• Sleep only as much as needed to feel refreshed and healthy the following day, not more. Curtailing the time in bed seems to solidify sleep. Excessively long times in bed seem related to fragmented and shallow sleep.

• Keep a sleep diary. Write down how you slept each night and triggers that may have interfered with your sleep. Reviewing your notes over several weeks may give you insight into your sleep problems.

• Have a regular time to wake up each morning. A regular arousal time helps strengthen circadian cycling and leads to regular times of sleep onset.

• Use relaxation therapies. A gentle massage, deep breathing, and other relaxation techniques are all generally considered beneficial to managing fibromyalgia and boosting restful sleep.

• Exercise regularly (but avoid exercising three hours before bedtime). Exercise may exert its beneficial effect by promoting a deep level of sleep (non-REM sleep).

• Sound-attenuated bedrooms may help those who must sleep close to noise. Occasional loud noises — for example, aircraft flyovers — disturb sleep even in people who are not awakened and cannot remember them in the morning.

• Avoid daytime naps. Napping in the afternoon interferes with nighttime sleep.

• Keep the temperature in your room cool. An excessively warm room disturbs sleep.

• Hunger may disturb sleep; a light snack of carbohydrates may help sleep.

• Avoid caffeine or alcohol in the evening. They both disturb sleep.

A doctor can prescribe a prescription for sleep medication but since we are discussing natural methods, we can talk about natural supplements to help with falling sleep at night and getting better quality sleep. There are several herbal sleep aids that can help.

Chamomile comes from nature and is probably one of the oldest and gentlest herbal sleep aids out there. You can drink it as tea because it has a mild and pleasant taste. In addition to promoting restfulness, it can also be used for stomach irritations. The good thing about chamomile is that it can be taken often and is mild enough to be used daily. There is no addiction factor and it has no side effects. Allergies, however, can be a concern if a person is allergic to daises. Experts do not know how chamomile works to induce sleep but they believe that apigenin, a flavonoid in chamomile, may be the chemical that promotes sleep, but there is a possibility that other components are involved.

Valerian is root that also been long used but it smells like old socks. It can be used to help with occasional sleeplessness but it’s helpful for long turn use. Many studies have shown that is safe and an effective method of promoting sleep and patients report less anxious and nervous behavior and that they get a better night’s sleep. The only concern may be that high doses can cause nausea, dizziness and headaches.

Melatonin is a chemical that our bodies produces at night and is often called the “sleep hormone” because its role in healthy sleep. As a supplement, it can be taken as a short term sleep solution and it is helpful to patients trying to wean themselves of sleep medications.

SAMe (S-adenosyl-methionine) is an amino acid derivative that is normally found in the body. It is typically used as an antidepressant but can be used to treat chronic fatigue syndrome or as an herbal sleep aid. It helps the body to promote healthy sleep cycles, and can be taken daily for several weeks.

There are many other natural and herbal sleep aids out there and the choices can be quite overwhelming. When deciding on which works for you, you must understand that some supplements are meant for occasional use while others can be taken long term. Further, many supplements offer additional benefits so you can take one supplement to meet several needs. You can also check with a naturopathic physician, a dietician, or a herbalist to help figure out what natural sleep aid works best for you.

To be continued…stay tuned for part 4 where I will be discussing positive thinking and taking control of your health. I was also asked to discuss personal relationships and intimacy as it relates to chronic illness so look for that post in a week or so.

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If you like have a question related to rheumatoid arthritis or fibromyalgia that you would like me to answer, please feel free to either leave it in a comment box anytime (leave your email/website link so I can notify you when it is answered) or send me an email to lanab2005@msn.com. I will do my best to answer your question.

Natural Healing: What can I do to minimize my symptoms? Part 2


Yesterday, in response to a comment left by a reader of this blog, I started discussing natural methods of healing. Many of you have explored this route whether as a supplement to current medication regime, because you do not have health insurance, or simply because you want to try natural healing before taking, or instead of a medicinal approach. In my last post, I mentioned that natural healing comes down a combination of nutrition, supplements, exercise, stress reduction and adequate sleep. Today’s society is busy, and as a result, we ignore the basic necessities for our human survival. We assert that these things are difficult without making the effort to realize how simple they are.

 

Losing My Way

 

Before I start preaching about the necessity of simple things towards feeling well, I want my readers to understand that I, too, am human. I, too, often get busy in my own life and get off track, and I, too, pay for it later. As a matter of fact, this morning I am dealing with the effects of the non-healthy choices I have made the past week.

This past week as been a combination of job interviews, school shopping for both my son and my younger brother who left this morning to a college two hours away, and trying to deal with a now vacant property because our tenants failed to give us any notice of moving until the rent was done. As I result, I have missed doses of my medication and supplements, lost sleep, became stressed out beyond belief, lost sense of my nutritional philosophies, and now, my joint pain and symptoms are a reminder of my ignored responsibilities towards my health.

 

Last night, at the millionth trip to the mall this month to pick up a few last minute items for my brother, we stopped to eat dinner in the food court. About six months ago, I made a decision about eating out, and that involved knowing exactly what I put in my body and even asking how food was prepared. But last night, I went against my own philosophy and ordered Chinese food from the Food Court at mall. I should have ordered something from Subway, but stupid me was craving Chinese food. The mall’s food court is the last place anyone should order Chinese food from especially someone with food sensitivities. I asked my brother to grab some bourbon chicken with veggie fried rice and an egg roll while I got my kids situated. From the minute the meal arrived at the table, I looked my brother and said, “What did they do? Dump an entire bottle of bourbon in this.” I ate about half a cup of the food that was in front of me and then proceeded to dump it into the trash.

 

Within a half hour, I was plagued with dizziness and nausea. My skin started to swell and my head started to pound. I am one of those people that are MSG sensitive and for five seconds, my cravings forced me to forget. I also had not taken my vitamin B6 supplement because I had a busy day so the Chinese food hit me like a slap in the face. I have ordered Chinese food before, in particular at a restaurant in my office building but that restaurant does not use MSG and ordering from there never makes me sick. However, as I was reminded, ordering Chinese food from the food court in your local mall is a big mistake when you suffer from conditions that render you sensitive to certain foods. Last night, I slept with ice packs on my head, under my head, and underneath my lower back. It was a combination of an RA and FMS flare-up.

 

My choices this week left me in a vulnerable position and adding the Chinese food to the mix was not a good choice. Lesson learned. With that said – natural healing with whatever approach you take – is simpler than your think. It goes down to a combination of five things – nutrition, supplements, exercise, stress reduction and adequate sleep and with those come many excuses, including my own. I hate to admit it, but when I was first diagnosed, I thought I would never make time to incorporate all these things into my life and, the hardest of these for me have been adequate sleep and stress management.

 

Nutrition – But my life is too busy to plan!

 

I love nutrition excuses because I have made them for nearly fifteen years. “My life is too busy to plan” my meals – that was my favorite excuse that I made about eating healthy. Understanding that my symptoms can either be greatly reduced or gone was my motivation to want to change. I now understand that food does not have to be my enemy and that it can be the best medicine that I offer to my body.

 

My suggestion is to stay away from foods that you believe are allergens. The most common food allergies are wheat and gluten containing products. Milk and other dairy products, sugar, artificial sweeteners, alcohol, caffeine, soft drinks, food additives (MSG!!!) and colors, preservatives and peanuts are also foods that cause flare-ups. Further, caffeine, alcohol and sugar make you more fatigued, increase muscle pain, and interfere with sleep patterns so it makes sense for your overall health to reduce intake or cut it out completely (Coffee has been hard for me to give up but I have been able to give up soda drinks and sugar and I am not an alcohol drinker). Minimizing your intake or completely ridding yourself of these things can greatly reduce the number of flare-ups and inflammation you may have as a result of your food sensitivities.

 

Your next question is “what is there left to eat then?” Well, I am glad you asked. Eat a diet that is high in raw fruits and veggies. Fifty percent of your foods should be in raw state. This may seem difficult think about it this way, eat a salad with your lunch and with your dinner and add fruit with your breakfast. Snack on veggies, raw nuts, seeds and fruit throughout the day. For some people, nightshade vegetables have to be given up depending on your tolerance. Drink 8 to 10 glasses of filtered water per day, fresh vegetable and fruit juices, and herbal teas. What is good about fresh juices is that they contain enzymes that reduce inflammation and pain and provide your cells with energy and help your body to heal. Veggie juices are best but if the taste bothers you, add an apple to the juice to give a sweeter taste. I read somewhere that apples are particularly good for fibromyalgia sufferers because they contain malic acid which creates cellular energy.

 

Eat four to five smaller meals rather than three larger ones. This will ensure that you are taking a steady supply of nutrients for proper muscle function.

Your remaining food choices should include brown rice, pasta without wheat or white flour, legumes, and meats especially lean proteins such as fish and poultry. Seafood such as trout, cod, halibut, mackerel and salmon contain omega-3 fatty acids that act as inflammatory. Include flax seed into your diet because flax seed contains essential omega-3 alpha-linolenic acid that also helps with inflammation. Alfalfa can be eaten for pain control because it contains vitamins, minerals, and amino acids that work to reduce arthritis pain, swelling and stiffness in the joints.

 

Supplements – A Surprising Benefit

 

I stopped taking Lyrica for Fibromyalgia and went back on Gabapention on my own accord and without consulting my doctor. Up to 14% of those taking Lyrica reported weight gain and I was one of those people. I had all these great goals in mind and Lyrica was taking them away from me so I made a choice and the pant size smaller that I have become since stopping Lyrica is proof that I made a good choice. My goal is to completely be medication free for fibromyalgia and later this month, when I see my doctor, I will be discussing the game plan with her. In part 3 of natural healing, I am going to discuss “taking control of your health” and this Lyrica discussion will be revisited. However, the reason I bring it up now is because I made a choice to figure how to use supplements to keep from gaining weight and to further weight loss.

The worst part about struggling with fibromyalgia was the constant feeling of swelling and puffiness all over. Some of it was retention of fluid and other times the feeling of swelling and puffiness was there even without inflammation and swelling being actually present. Needless to say, it was a miserable way to live. Truth be told, (and I am sure that other chronic pain sufferers- in particular, the newbies can agree) this type of pain and swelling makes person wish that they could just die. I am glad that that dark period of my life has passed but for those you who have symptoms of an “unknown” illness that no one is able to diagnose or if you are a new sufferer, there is hope. In addition to medications (or without medications, if you decide that course), nutritional supplements can provide relief.

 

Nutritional supplements, in addition to providing relief, can help the body to heal. I already mentioned omega 3 fatty acids, Alfalfa, and flax seed. I have not tried the alfalfa but I do take an omega 3 supplement containing flax seed. You can use flax oil cold pressed (never heat it) as a dressing for salads, baked potatoes or other cooked veggies. Omega 3s and flax oil work to promote healthy cells and the immune system. In addition, I take a Vitamin B6 stress complex supplement daily which has been a Godsend to me.  Mine comes from Nature Made and is relatively cheap and contains thiamin, riboflavin, niacin, Vitamin B-6, folic acid, Vitamin B-12, biotin, and pantothenic acid, along with Vitamin C.

 

Malic acid and additional Magnesium can help those with fibromyalgia to support the muscular system and energy production at the cellular level. Those with FMS tend to be deficient of Malic acid and Magnesium. I have also heard about liquid oxygen for oxygenate cells, providing trace minerals and enzymes which help to cleanse the body of toxins. However, I do not have any recommendations and the link provided is only for educational purposes. If anyone has a recommendation for a product, please post that in the comment box. I have done body wraps which I have found helpful in removing toxins, but they are rather expensive to incorporate often. Other supplements that can be used include willow bark, turmeric, cayenne, ginger, multienzymes, bromelian (pineapple enzyme) and pathothenic acid. Again, my knowledge is only limited to what I have read about these products so please do your own research and figure what works best for you because this is different for everyone.

 

Exercise – I don’t have time to work out three times week!

 

I work in the legal field. I wear suits and dress clothes nearly everyday. As a matter of fact, I only own one pair of jeans, one pair of sweat pants, a few t-shirts and one pair of tennis shoes that does not fit on the days my feet are swelled. I am not the physically active type nor do I dress the part because more often than not, I am wearing dress shoes or dressy sandals. It is the person I have evolved into as a result of my career choices which come to play in all aspects of my life. Even when I go grocery shopping, I am often dressed in a business casual way. It is part of who I have become (My husband says I am classy; my sisters say I am boring) because of my career choices and while I am very proud of that, I am not the person you will see during your afternoon jog, or your aerobics’ class, or even at your local gym.

 

The person I am will never change and truth be told, I do not have time to work out times a week at my local gym but I am the person who walks everywhere. I take the stairs every time unless I am having serious pain and symptoms. I park my car the furthest away so that I can walk from my car to my destination. I play with my kids when I can and I take an afternoon walk when the day at the office is not busy. To me, this is active. I am constantly moving when I am at home and I do not sit down until my head hits my pillow at night. I am never going to be a top-notch fitness junkie but I am content with the physical activity I make a part of my daily life. I am not lazy either because I make a choice to be as active as I can be considering my daily physical pain.

Those with fibromyalgia and pain conditions refrain from exercise because often, it worsens their symptoms. That has been a big deterrent for me, but I also understand that over time the lack of exercise causes less blood and lymph flow through the body and this worsens your symptoms. So many us fall in this category and our excuses are many. My advice: start exercise slowly, keep moving, and do what works best for you.

 

To be continued…stay tuned for part 3 where I am going to discuss stress reduction, adequate sleep, positive thinking and taking control of your health.

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If you like have a question related to rheumatoid arthritis or fibromyalgia that you would like me to answer, please feel free to either leave it in a comment box anytime (leave your email/website link so I can notify you when it is answered) or send me an email to lanab2005@msn.com. I will do my best to answer your question. See disclaimer.