Fibromyalgia Patient Interview 5: Mae Allison Wells-Kress

Meet Mae Allison Wells-Kress from US, who was diagnosed with fibromyalgia after umpteen tests. She also has been diagnosed with Raynaud’s syndrome and Arnold Chiari Malformation.

Age: 28 (as on November 2013)
Location: Westerville, Ohio, US
Occupation: Senior Graphic Designer

Kind of occupation: Full Time
Year when symptoms started: 2008
Diagnosed in: 2009

Marital Status: Married

What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?

My senior year of college is when I started to have symptoms. I had always lived a very fast paced life and was always working on schoolwork, attending class, working both at my part-time job 2 internships and hanging out with friends when I found any spare time in my schedule.

The first symptom I started to have was fatigue. Because I was an on-the-go type of person, at the time I just thought it was my body finally catching up to me. When the fatigue failed to disappear after a few months I started having pain in my joints as well as indigestion. The doctors seemed to be more concerned about my stomach issues than my widespread pain and continued to conduct more medical test to look for answers to my digestive issues. On September 1, 2009 the doctors removed my gallbladder, convinced that it would solve all my problems. Unfortunately the surgeon somehow closed off my bile ducts while I was under the knife and a few days later I had to go back under and have a stint put in my bile ducts so that I would be able to eat and drink again.

A month later my symptoms have only seemed to worsen. My general practitioner conducted more tests, sent me out to numerous specialists, but none of the tests showed anything and the doctors seemed to focus on one or two of my symptoms, not everything as a whole. I finally went back for a check up with my regular doctor and while he was listening to my heartbeat through my back, he noticed how tender I was when he touched me. He conducted the pain point exam and he knew right there and then that it was Fibromyalgia.

I thought that finally being told what was wrong with me would be a relief, unfortunately I still have lots of unanswered questions. Knowing this information does not solve my problems, or kill my pain. I still experience pain daily but stay positive that I will get through this and believe that someday I will live a day without pain.

How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?

My pain is usually a deep achy feeling and lives in my bones and joints, almost as if I have a fever full time. I most often experience pain in my elbows, knees, down my neck and back and in my shoulders. I have sharp pains every now and then in my breastbone which makes it hard for me to breathe. I also experience daily headaches as well as migraines with double vision as well as numbness in my hands and feet a few times per week. I still have indigestion issues but have learned to stay away from certain types of foods (alcohol, gluten, dairy, corn) in order to help with my stomach issues. I am tired on a daily basis but have a hard time falling asleep. I never feel as if I get a good night's rest and getting out of bed in the morning is challenge. I also have a tough time regulating my body temperature and have a hard time tolerating cold and very hot climates. I am always cold and tend to have very low blood pressure majority of the time. Other symptoms that I experience on a regular basis include anxiety, frequent viruses and infections, myofascial pain, trouble hearing, muscle cramps and spasms and painful menstrual cycles.

Do you have any other medical conditions along with fibromyalgia?

I have been diagnosed with Raynaud’s syndrome, which is what causes the numbness in my hands and feet. I have also had a MRI and CT scan that showed I have low-lying cerebral tonsils, otherwise known as Arnold Chiari Malformation. Doctors believe that my headaches are associated with the Chiari, however I am still waiting to get into the Cleveland Clinic to determine whether or not I need surgery since my symptoms continue to worsen.

How has your life changed with Fibromyalgia?

As much as I try not to let my Fibromyalgia rule my life, I have had to make drastic changes in my life. I no longer live the fast-paced life I was used to. I often feel that people perceive me as being lazy or anti-social because I do not have enough energy to go out with friends or do housework. Working full time can be challenging, especially on the days my pain is in full force. I still have a hard time accepting that I may never be able to work an 8-hour day, come home make a nice dinner for my husband and still have enough energy to do the dishes and finish some chores around the house before bedtime. In my mind I still feel like I can conquer the world, but once I set out to do it, I don’t get very far before the pain sets in. I try to make sure that I still get out and see friends, exercise, and do things because it will keep me sane. And even if I only get out for a few hours a week it is enough to keep me happy.

How has fibromyalgia affected your relations?

Fibromyalgia has definitely affected my social life. I used to be the life of the party, and now I am surprised if I make it to the party. It is hard live like a normal 28-year old, going out to bars, having fun dinner parties, etc. when I feel that I am twice my age inside. My friends and family have always been very supportive. And the ones didn’t try to understand what I am going through aren’t worth fighting for to have in my life.

I am lucky to have a very supportive husband, but I know it is hard on him. He would love to go out with friends and stay out late, but I often feel as if I hold him back from doing so. He often has a hard time understanding what I am going through, and can’t seem to understand my level of pain. At times it is hard on our relationship especially since at times we lead two entirely different lives. He likes to go out and be adventurous and I know I have limits and often play it safe. My husband also thinks that I am no longer an affectionate person, which isn’t the case. I love him dearly and wish I could show my affection but there are days when hugging hurts, so I have learned to put my guard up in order to prevent being touched,

How has fibromyalgia affected your career?

My employer is very flexible and allows me to work from home if I need to at times. I know that most other companies would not allow me to work from home as a graphic designer. I don’t necessarily think that my condition has held me back from my current role, but I think it holds me back from exploring my options at other companies because I probably will not find another company that allows me to work from home when I do not feel well or take time off to make it to my many doctors appointments.

What kind of specialist you are consulting?

Currently I am seeing a Pain Management Specialist and a Rheumatolgist. In the past I have also seen a holistic pain doctor, neurologist and an internal specialist.

Has your medication changed over the years? What medicines you are having now and are they helping?

I have never done well with any of the medications that claim to help with Fibromyalgia symptoms, they upset my stomach and make me even more tired than I already was. In the past I have had doctors put me on and take me off medicines such as Cymbalta, Lyrica, and Savella. I have been put on Ambien as well as other sleep medications to help with my troubles falling asleep. I have been put on numerous pain medications like Vicodin, Hydrocodone, Percoset, Oxycodone, Tramadol, Ultram, Cortisone shots and the Butrans patch to help with my pain. I have also been put on Imitrex and nerve medications for my headaches.

Currently, I remain on the Butrans patch, which is a transdermal patch that I wear all the time. It gives off a continuous low dose of medication to help with the pain. I do think it helps with the overall pain. I change it once a week and though I do experience itchiness around the application site, the side effects are minimal compared to majority of other pain medications I have tried. I also continue to use the Tramadol for days when my pain is worse that usual.

I have taken a turn where my fatigue is worse than usual and have not needed to use any sleep medications in the past year or two. My headaches have been worse over the past year and I turn to over the counter drugs such as aspirin, Tylenol or Aleve first. If OTC drugs fail to do the trick I usually take the prescription medication Imitrex, especially when the headaches are on the verge of turning into migraines.

As controversial as it is, I look forward to medical cannabis being legalized in Ohio. I have been told by numerous people with Fibromyalgia that it does help with the pain, and I hope that the government can see past certain issues to realize that this drug does help a great deal of people with different illnesses.

Have you tried alternate therapy? Did it help you?

I have tried many types of alternative therapy such as massage therapy, tens units, water hydro-massage beds, chiropractic adjustments, physical therapy, acupuncture and neck traction.

The only method that I felt gave me any sense of relief was the massage therapy. I went to a massage therapist that is not the typical masseuse that would be found in a day spa. The massage therapist was familiar with fibromyalgia and was able to work my muscles without me having to point out my sensitive spots to her. The massage therapy method wasn’t exactly relaxing at the time, truthfully it hurt, but in the end it was the only method that relieved my pain for a few days. Unfortunately my insurance company would only cover so many visits per year, and it was very expensive to keep up with after I was responsible to pay for the entire visit and not just my specialist copay.

What are your personal tips for relief?

I have found that what I eat definitely plays a role in my pain levels. I have learned that staying away from dairy, gluten and alcohol greatly improves how I feel overall. If I eat like crap, I will feel like crap the next day. One of the other huge triggers that I have found greatly increases my pain levels is diet soda. For whatever reason, diet soda tends to make my headaches worse.

I have also found that light stretching each morning when I wake up and before I go to bed, helps to keep my body loose. My muscles and joints tend to tighten up if I do not stretch them regularly and it sends my pain levels sky high.

Do / Can you exercise? What exercises do you do? Do you meditate?

I do try to exercise when possible, however I am busy so I try to fit exercise in when I have free time. I find that most forms of exercise are hard on my joints. I do find that yoga is relaxing as well as a great way of relieving tension and pain. I try to do light yoga at home or on my lunch break at work a few times a week. Exercise makes you feel good, and if you can push yourself to exercise even when you are feeling bad, you will end up feeling better in the long run.

I have learned to meditate and do breathing exercises on my own. I do not feel as if it helps relieve my pain, but it does help in stressful situations which in the long run could prevent my pain levels from increasing.

Have you changed your diet / gone gluten free and did it help you?

In high school I started having problems digesting dairy, I gave it up completely and a few weeks later I felt like a million dollars. Years later I started having similar symptoms as I did in high school when I ate dairy but I had a much harder time tracing it back to anything since gluten is in so many things. I try my best to give up gluten because I know it makes me feel lethargic and even achy at times, but it has always posed as a challenge when eating out at restaurants and even going to dinner parties. It took me a long time to understand what I can and cannot eat while going gluten free, so I never assume that friends, family and even restaurant chefs know what I can safely eat.

What would you like to say to people who know someone with fibromyalgia?

Fibromyalgia is an illness that can’t be seen. You never know when someone with Fibromyalgia is hurting. We are strong and do not want your sympathy nor do not want to be treated as if we are contagious. All we want is your respect for what we go through on a daily basis. We live each day in pain, and that does not make us weak, it makes us stronger than most people. We are not lazy, nor are we unmotivated, however for us to live normal lives is easier said than done.

What would you like to say to doctors?

I would like doctors to stop treating Fibromyalgia as a term used for the garbage pail of symptoms that can’t be identified or linked to anything. I have had numerous new symptoms come up over the past few years where doctors will tell me that it is probably linked to the fibromyalgia. On any normal patient, the doctor would conduct a series of tests to determine a cause, but because I have fibromyalgia it does not mean my symptoms are linked to my illness. I learned that this year, when it took doctors 6 months to conduct an MRI ultimately showing that I have Chiari Malformation. Even after the MRI showed this, doctors told me that it tends to fall hand in hand with fibromyalgia. Fibromyalgia may not be very well understood, but that doesn’t mean you should give up on us since our cases our harder to solve.

What relations and activities makes you feel better?

I have found that friends and family are the best support you can turn to. I have tried Fibromyalgia support groups before and I felt as if I was the only person there with a positive outlook on life. Support groups are supposed to help you go on with your daily life and lift you up, not bring you down. I have found that ridding my life of all negative influences is the best way to keep a positive outlook on life. I want to live my life, and I am the only one who can control just how I choose to do so.

I do enjoy joining in on conversations found on numerous Fibromyalgia Facebook pages. It makes me feel better knowing that there are others in this world experiencing similar problems and sharing stories is not only a good release, but gives me insight as how others are trying to help their pain, what works and what doesn’t. It has become a go to when my doctor is unable to answer my questions and I find that I need answers. People around the world tune in every day to these pages and just want to help others find answers to their problems and have their questions answered in return. Fibromyalgia Facebook pages like an encyclopedia on the illness written by hundreds of specialists.

When did you join the Fibromyalgia Awareness blog www.fibromyalgiaawareness.com / the blog's Facebook Page? What do you think about our awareness initiative?

I joined the Fibromyalgia Awareness facebook page about a month or two ago. I feel that educating the general public is important in our battle with this silent illness. So many people only know what they have heard over the years about Fibromyalgia. I have had people tell me to my face that the illness doesn’t exist, is all in my head, it is just depression or it’s a cop out for hypochondriacs. Many people are uneducated on illness and unless we take a stand to try to set the record straight, people will continue to believe what they have heard in the past or from other uneducated individuals. We all have to do our best to spread the word that Fibromyalgia can’t be seen, but that does not mean it is real.

--------------------------------------------------------------------------------- Interview published on 6th September 2013. This blog and its owner have the rights to this interview. Do not copy the interview on your website / print / publish elsewhere without our prior approval that includes the approval of the interviewee. However, you can share the link of this interview to help us raise awareness. The opinions in the interview are solely of the interviewee and we do not advocate the use of medicines / drugs, if any, mentioned in the interview. Kindly consult your doctor before starting any therapy or medicine mentioned here. You can write to us on contact@fibromyalgiaawareness.com We hope you Like and Share our Facebook Page. ----------------------------------------------------------------------------------

Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every patient's story is a source of learning and inspiration. These stories serve many purposes like helping us understand the condition and symptoms better, helping people with similar symptoms get diagnosed in time, finding tips that work and making the 'Invisible Illness' visible so that sufferers are saved from the stress of making people understand that they really are unwell.

- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf

Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every patient's story is a source of learning and inspiration. These stories serve many purposes like helping us understand the condition and symptoms better, helping people with similar symptoms get diagnosed in time, finding tips that work and making the 'Invisible Illness' visible so that sufferers are saved from the stress of making people understand that they really are unwell.

Fibromyalgia Patient Interview 1: Grace Simpson

- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf

- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf

Fibromyalgia Patient Interview 1: Grace Simpson

- See more at: http://www.fibromyalgiaawareness.com/2013/09/fibromyalgia-patient-interview-2-keri.html#sthash.ELwUGdfP.dpuf

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Interview published on 22nd November 2013. This blog and its owner have the rights to this interview. Do not copy the interview on your website / print / publish elsewhere without our prior approval that includes the approval of the interviewee. However, you can share the link of this interview to help us raise awareness. The opinions in the interview are solely of the interviewee and we do not advocate the use of medicines / drugs, if any, mentioned in the interview. Kindly consult your doctor before starting any therapy or medicine mentioned here.
You can write to us on contact@fibromyalgiaawareness.com
We hope you Like and Share our Facebook Page.
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- See more at: http://www.fibromyalgiaawareness.com/#sthash.5Tz06piG.dpuf