Who says you can't run when you have Fibromyalgia?

Dancing the Happy Dance with Sister in Law Tessa

Jennifer and myself waiting for the start of our race.

This says it all.

So I started running...yes you can run when you have Fibromyalgia. I have had people say " Oh I was told you can't run when you have fibro" Well doctors have told me I can't do a lot of things that I do.  Who are they to determine what we can and can't do.  I am the navigator of my life and I will try everything I want to try go where I want to go and be WHO I want to be and bring a victim of this disorder is not what I want to be.
To prepare for running I actually did a 5K in April for the National Multiple Scoliosis Association (MS Walk).  This is was the 5th year for and my 3rd as a team captain.  My team was small consisting of 5 people. Together we raised over $500.  During this event I only ran for about 3 minutes.  But I was inspired to run more.  I started training for a jogging event by going around my block alternating walking and jogging.  I start out jogging for about 3 minutes and then alternate walking and jogging for the remainder of the time.  I am able to make it around the block in 5 1/2 minutes. Not to bad since the block is 1/2 a mile around.
 My next event was a benefit for a fallen soldier.  This was a 5K that was on a route that the fallen soldier use to run when he was home on leave.  This one I power walked with my dear friend Sandra and we finished in 49 minutes.
This weekend I walk/jogged in an official 5K with my sister in law's Jennifer and Tessa.  Tessa has been doing 10K's and 1/2 Marathons since the beginning of the year and like myself this was Jennifer's first race. I did a lot better then I thought I would.  I started out great, paced myself and ended up finishing 22 out of 33 for my age group of 40-44.  I used the GPS on my phone along with iMap My Run Program.  I did it in 38.21 min at a pace of 11.48.
I am so happy I did this run.  I was a little sore later that day  and my feet are sore even now
days later but it was well worth it.!  I have already signed up for my next 5k and I am contemplation joining a running club so I have people to inspire me to run on a consistent basis.

Doctors Visit...Questions

So today I have a visit with my rheumatologist.  I have been experience a loss of memory...really loss of skills.  I have be unable to perform some tasks that I use to know.  It really showed up during the last month of my math class. I knew the material but failed one of my mid terms.  Is it due to stress?, Side effects of a medication? Or something new altogether? I don't know but it is worrying me.  If it is something I have to really think about to do, I am having a hard time. Well hopefully talking to Dr. Silverman will give me some in site as to what is going on.
Well I hope everyone has a great day and (((Gentle Hugs))))
♥ Debbee

What is the one thing you had to give up since Fibromyalgia?

The one thing that I have had to give up since having been affected by fibromyalgia was....who am I kidding?  I have had to give up so much. My career, my dirt bike, friend, high heeled shoes...oh I miss high heel shoe.  I us to wear them to work at the salon and feel fine at the end of the day.  Since Fibro I have not been able to wear them without paying for it with in an hour or two.  The sore legs, the lower back pain, the hip pain.  It just sucks. I have now been relegated to wearing flats.  At first it was really hard because I love shoes (check out my other blog) and I did not have many choices.  Well that has been a few years so now I am loving it because there are so many cute flats now.  So tell me what you gave up that really turned out not so bad.

Fibromyalgia: A brief summary from a patient

I had to do a health report for one of my classes and what better subject then Fibromyalgia.  I took some of the information from the two books listed at the bottom of this posting and some of the information is from experience.  I hope you enjoy reading this no nonsense summary of what fibromyalgia is to me. 

Fibromyalgia: from the Latin word fibro (fibrous tissues), my (muscles) and algia (pain), it is a chronic syndrome that affects approximately 4 percent of the population with 3.4 percent being women. This disorder affects a person’s muscles and soft tissue and almost always is accompanied by sever fatigue.  The cause is unknown but thought to because by stress, sleep disorders, trauma and possibly a change in hormones.  Unlike multiple sclerosis or rheumatoid arthritis, fibromyalgia is not progressive.  A progressive disease continues to get worse and can be fatal.  Fibromyalgia is for life and has periods of remission and flare-ups that vary in length and severity. This cycle keeps a person diagnosed with fibromyalgia in a constant state of waiting, waiting to feel better and waiting for the next flare-up to come. A person who is eventually diagnosed as having fibromyalgia may have started out by having by an episode amplified pain.  Maybe they had a minor surgery or injury but the pain is a hundred times worse than it should be. For the person without fibromyalgia the pain may be intense for a few days, maximum, but a person who is experiencing intense pain past that may be suffering from something other than a normal pain.  Along with this amplified pain comes a host of other ailments.  The best way to deal with this disorder is to be under the care physician of a qualified physician who understands the fibromyalgia patient.

What: Fibromyalgia is characterized by wide spread musculoskeletal pain, aching, and stiffness associated with sleep disturbances and fatigue. Fibromyalgia strikes people in all age ranges from young children to the elderly. Most people develop it in their 30’s and 40’s.

Why: Research on the brain inconclusively discovered that people with fibromyalgia have lower levels of important neurochemicals in the brain that effect how the brain processes things.  These include:

~Serotonin, a chemical messenger that plays a part in feelings of well-being, modulating pain and promoting deep sleep.

~Norepinephrine, dopamine and cortisol, important stress relieving hormones

.~phosphocreatine and adenosine triphosphate (ATP) which regulates calcium in muscle cells need to contract and relax.

Symptoms:

Main: Muscle pain, Tender Points and Sleep Disturbance.

Other Symptoms Associated with Fibromyalgia includes:

Fatigue, /Chronic Fatigue Syndrome, Joint Pain, TMJ, Headaches/Migraines, Irritable Bowel/Bladder Syndrome, Cognitive Impairments/Memory Problems, Restless Leg Syndrome and other sleep disorders that do not let your body get restorative sleep.  Raynaud’s Phenomenon, Carpel Tunnel Syndrome, Mitro Valve Prolapse, depression/anxiety and panic disorders. Also includes wide spread pain above and below the waist on both sides of the body.

Diagnosis: Ruling out other conditions.

The doctor needs to rule out other problems and/or diseases such as rheumatoid arthritis, lupus, reflex sympathy dystrophy, multiple sclerosis, and other arthritic conditions. They also need to rule out perpetuating factors such as growth hormone deficiency, hypomagnesaemia, thyroid dysfunction, vitamin deficiency, or infections such as Lyme disease or the Epstein Barr virus.

No blood test exists for fibromyalgia but excluding other conditions is important.  To proceed with a fibromyalgia diagnosis, a history of at least 3 months of widespread pain must be present. A joint and muscle examination, a neurological examination and a tender point examination test will be done. During diagnosis, your doctor will palpitate eighteen areas ranging from your neck down to your knees f testing for pain. If eleven of the eighteen points are painful (not tender) the diagnosis of fibromyalgia will be made.

Treatment: So Now What

Once diagnosis is made you can start moving forward.  You can successfully live with fibromyalgia if you manage it properly. Your doctor may prescribe medication for you to take. There are several medications on the market approved for fibromyalgia such as Cymbalta, Lyrica, Savella.  These are medications that ease pain by working on the brains chemistry.  Your doctor may also put you on an antidepressant or a mood stabilizer to help with depression and feels of hopelessness.  To also deal with your pain they may prescribe Ibuprophen or Vicodine for depending on the level.   

Lifestyle Change: Now it’s up To You.

Now is the time to make some significant changes in your life.  There are professional that can help you alter your life style so you can better manage your symptoms.

Occupational Therapy:

An occupational therapist can help you modify how you do things, sleep better, work more efficiently and have better quality of life.  They are educated in getting people going to live a full life again.

Physical Therapist:

A physical therapist will teach you how to exercise in such a way to keep your pain at a minimum while you are getting the benefit of exercising. When you have fibromyalgia the worst thing you can do is lay in bed.  Physical activity is good for your body and your spirit.

Therapist/Psychologist:

Seeing a therapist who understands what it is like to have fibromyalgia is very important. Fibromyalgia is sometimes difficult to explain and some people have a hard time understanding that it is real. 

Stress Management and Relaxation:

In order to keep your fibromyalgia in check you need to be as free of stress as possible. Chronic stress can lead to a significant flare. Eliminating anything from your life that you consider stressful will be benefit to your health.

Bibliography:

Online Sources:

Web MD Internet Site

Fibromyalgia Health Center romyalgia Health Center

http://www.webmd.com/fibromyalgia/default.htm

Hard Bound Resources

Taking Charge of Fibromyalgia: Everything You Need To Know to Manage Fibromyalgia. By Julie Kelly, M.S., R.N. and Rosalie Devonshire, M.S.W., LCSW Fifth Edition Published by Fibromyalgia Education Systems, Inc. 1991-2005

The Complete Idiots Guide To Fibromyalgia, Second Edition By Lynne Matallana with Laurence A. Bradley, Ph.D. Published by Alpha, A member of Penguin Group(USA) Inc. 2009

Additional Source:

Debbee Finney, I have fibromyalgia.  I was diagnosed in 2004 and have been to doctors that think I am lying, I’m a hypochondriac and I have mental problems.  Fibromyalgia has a huge psychological component when it comes to the support you get.  I was fortunate enough to find a doctor in 2009 that changed the way I deal with my illness.  I went through a Rehabilitation program at Cedar Sinai in Los Angeles in 2010 and have been doing very well with the lifestyle changes I have made. Some of the information in my report comes from my experience as a patient. 

What a Difference a Bed Makes.

So in June of 2007 I cut back my hours behind the stylist chair for a more body friendly job.  Sitting behind a desk.  I started to work part time at a attorney services company.  I love this job, so much that by October of that year I was begging to have a full time position and they gave it to me. Shortly after going full time I had a set back having to do with the stress of my son going into the Army and possible deployment to Iraq. The stress had cause me to experience such sever pain in my lower back and hips that I was walking with a cane for a couple of weeks.  I finally got relief for ibuprofen and Soma. They worked wonders but I had to get to the bottom of why I was now having the hip pain.  I saw a chiropractor and received a few adjustment when it was discovered that my hips were out of alignment.  Think, Think, Think what could be causing this to happen.  Yes I know that I have Fibro...I was not ignoring that fact, but how did my hips become so far out of whack.  I only thing I could think of causing it was my bed.  Now my mattress was only about 4 years old so could it be the culprit? With much prodding on my part and the fact that it was tax season, I convinced my husband to let "us" get a new bed   The bed I wanted to try was a memory foam mattress, no springs and no wood. After I tried it out in the showroom for about 30 minutes I was willing to give it a try.  Now I bought a knockoff but I do not know if there would have been a difference except for the price. We paid about $800 for bed, box spring and frame.  From the moment I started sleep on it I know that this was the best $800 we ever spent.  Within a week my hip pain has dissipated. What a happy girl I am!! Now these mattress are not for everyone. I tend to like a really firm mattress so I has been a god send for me but hubby on the other hand hates it.  Remember "The Princess and the Pea"?  I think that is him.

Not my bedroom but I can dream.

From then, which was April 2008, I was pretty much under control with my pain issues.  It did help that the lord looked down on me and saw what I was already going through and had the mercy to see that my son be sent back home to me.  By June he and his fiancée were back home and all was well on the home front for a while.

Moving on...

So that was a traumatic experience...so sad it had to come to that for me to get someone in the medical field to actual listen to me. I now started on a journey of therapy and psychiatric sessions.  New medication...less stress that was the plan.  Not more as in quantity but different functioning medication. I resumed my part-time position behind the chair armed with tools to help me work more efficiently. A step to raise one leg up on to relieve the pressure on my back, only one weave a day, no more then 2 appointments in a row. I was trying with all my might to act normal, like I did not have this horrible thing that nobody believed in.  I found doctors but the people around me were still a little questioning, not so understanding.
I needed to change. Something. A phone call one day was just what I needed...a different job.

I'll be back

Getting into the swing of things with the new semester at school so I will post a new chapter tomorrow.

♥Debbee

What am I doing?

What am I doing? I can't stop crying...I really feel like a crazy person.  Here I am in a small office waiting for them to admit me to the Psychiatric wing of the hospital. Seriously I should be in the the regular part of the hospital with a doctor who will listen to me about all the pain I am experiencing.  But instead I have to go through my bag of clothes and  take out the strings from my sweat pants and shirt and have my toiletries looked through for anything sharp. Now for the interview: why am I here, am I going to hurt myself, have I ever tried to hurt myself...the questions were endless. I just wanted to go in a dark room and go to sleep.  Thank goodness they gave me something to calm me down so I could sleep. During my stay I was required to see a Psychiatrist. Little did I know that this would be the first person who actually believed me that I was in pain and  was having a hard time dealing with it. I just needed some help.  Dr R. was the doctor who put me on Cymbalta.  It took a few weeks but it was what I needed to control the pain.  He wondered why the doctor in Santa Barbara did not put me on it, I wondered too.
My time spent in there is kind of a blur but it was a relief to not have to put on a show that I was fine when I really wasn't.  I  saw the psychiatrist a couple times a day and also went therapy groups to learn how to deal with the emotions that had piled up.  My family was very supportive and came to see me everyday, twice a day over that weekend. It was really like a long needed vacation. Don't get me wrong it is something that I would never want to experience again. Sometime you have to scream out for help instead as asking politely.
It was so unfair that I had to get brought down so low in my struggle with fibromyalgia that it resulted in a breakdown.
I left the hospital with a small sense of hope.  Someone was actually going to help me with my pain. I love Dr. R ...I felt he saved me in my time of despair.

Drastic Measures

In my quest to find a doctor to help me I found out how the medical field really views the diagnosis of Fibromyagia. They don't believe you.  "Hypochondriac"," lazy", "exercise more", "eat better", "your just depressed"..on and on it went.  I now had a diagnosis but no one I could turn to.  Every time I had a problem it was difficult to travel to Santa Barbara, so I eventually gave up on seeking help from any doctor. I only went to an acupuncturist at that point along with self medicating myself.
I had plenty of pain pills, anti inflammatories, a tens units and plenty of alcohol. That is the way I made it through the day.  I was in bed, in pain, all day. It was all I could do to drop off and pick up the kid from school.  It was back to my bed  until I had to cook dinner and act like a wife and mother. I would have more then a few drinks to make it through the evening and then I had insomnia so bad that I stayed up all night trying to do some sort of crafts to keep my mind busy.  This was the vicious cycle I had created.  It got to the point where I was not making rash decisions.  My husband had no idea what was going on financially. Between my not working and trying to keep my spot at the salon, we were in trouble financially but I was so far out of it that I did not think to tell him. All the stress of the constant pain and worry over if I was ever going to get better had caused me to lose touch with reality, I was on my way to having a mental breakdown.  In late November I was done, I'd had enough of everything and lost it.  I cried all day.  My son came home to this broken women.  Poor boy he had no idea what to do. All I knew was that I wanted to go away. I did not want to hurt myself I just wanted to disappear. I was confused and feeling helpless. I had to get myself help. The only way I could think to be heard, to get help with my physical pain that was causing me this extreme mental anguish was to be committed. Yes as in "Psych Ward" kind of committed.  I spoke with my friends mom ,who is a nurse on a psychiatric ward, to ask where to go, who to see.  She gave me great advice and really understood how I was feeling.
My husband knew something was going on at home but since he was at work he did not fully understand it when I hold him, "When you get home I need you to take me to the hospital ". I explained when he arrived. Stunned, my husband did as I asked.  After a tearful drive to a local ER, I told the nurse that I felt I was having a breakdown and that I wanted to be admitted for a psychological evaluation. (dramatics have been omitted since this was like an out of body experience for me)
Next would come the walk through the double glass, double doors where I would spend the next 72
 hours...

Trying to find sleep.

After my diagnosis I was sent to have multiple sleep studies done since the lack of sleep is a big component of Fibromyalgia.  Turns out I suffer from Periodic Limb Movement.  The movement of my body was waking me up then 85 times an hour...no wonder was exhausted. Now it was time to experiment  with multiple sleep aids...I can not remember them all but I do remember that I was put on experimental fibro drug controversialists past, The doctor prescribed me Xyrem. This is the same thing a GHB, the date rape drug.  It is the most controlled substance anyone can be prescribed. It was a salty liquid so I had to drink it with something sour like lemonade just to get it down. I did that for a month without a positive result. In the end it was not the sleep aid for me. I was eventually put on a medication for Parkinson Disease (Mirapex) Amazingly it did help with the movement but I still was exhausted. I could sleep but it was not the restorative sleep I now know that I needed. I found myself still sleeping a majority of the day so I could act like I was a normal person when my husband and teenager came home. I would go to work at the salon when I absolutely had to.  My rheumatolgist did not do much in the way of helping me feel better and he was all the way in Santa Barbara.  So now I had a new mission...find a doctor that could help me get my old life back...and this was just the first 12 months after diagnosis, Fall 2005.

My Journey Back to Living, Diagnosis

Hi I am Debbee and I suffer with Fibromyalgia.  I was diagnosed in 2004 but was undiagnosed for the many years prior with sever back, arm and leg pain... Migraines, depression, pain, bleeding, days in bed, a fallen uterus, a sagging bladder, crying, despair, exhaustion, insomnia and sever gastric problem

 I was not until I went to the Sansum Clinic in Santa Barbara, California that I was diagnosed. That was a major turning point in my life.  Along with the pain I had been suffering, I was dealing with sever menstrual bleeding that lasted for 21 days of my 28 day cycle along with a fallen uterus.  I visited every doctor in my northern Los Angeles County area and was left feeling hopeless. No one could tell me what was going on with my body.
Upon completing a comprehensive physical, I was diagnosed with Fibromyalgia. The female problem was still a mystery.  I was referred to specialists in the fields of gynecology and rheumatology. For my female issued I was finally offered what was to be the only solution to the bleeding: a  total hysterectomy.  I know it sound drastic but after having the sever bleeding for over 18 months I was ready to be done with the whole 'period" thing.  Since my husband and I had already decided to not have any more kids and had made to official by my husband getting fixed, the issue of future pregnancies was a non-issue. I was 37, married with a 15 year old son and I was ready to move on. Next was to see what I to do about this ailment I was diagnosed with. So begins my journey to become well.