A Few Sore Muscles...

FIRBOMYALGIA (FMS)-Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe. FMS means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain. Fibromyalgia is frequently associated with stress-related disorders such as posttraumatic stress.

The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to "push yourself" to get things done.

Fibromyalgia is described as a "central sensitization syndrome" caused by biological abnormalities in the nervous system that acts to produce pain and cognitive impairments as well as psychological problems. The term "fibromyalgia" derives from new Latin, fibro-, meaning "fibrous tissues", Greek myo-, "muscle", and Greek algos, "pain"; thus the term literally means “muscle and connective pain".

Fibromyalgia is classed as a disorder of pain processing due to abnormalities in how pain signals are processed in the central nervous system. Exercise improves fitness and sleep; and may reduce pain and fatigue in some people with FMS. In particular, there is strong evidence that cardiovascular exercise is effective for some people

Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating. The muscles in these painful areas can feel tight, knotted and rope-like.

Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though concrete blocks weight down their arms and legs and their bodies may be so drained of energy that every task is an effort.

Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks. This symptom is referred to as "fibro fog" and may hinder job opportunities.

Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the un-refreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep. As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. Overnight sleep studies will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.

Why in the world would I spend so much time telling you about fibromyalgia when this is a blog about grieving mothers? Because I have recently been diagnosed with this chronic illness. I began by listing some of the symptoms of this syndrome but there are so many more than the small list I began here. The other idea that scientists are working on is a genetic link that this is passed from generation to generation. I have a birth mother that has chronic insomnia and a birth father with Parkinson’s and severe restless leg syndrome; both of these are neurotransmitter disorders. Actually 90% of people who have severe restless leg syndrome are diagnosed with FMS.

I have had severe insomnia for going on 13 years. It just seemed to hit out of the blue when suddenly I could not sleep. I was tired and sleepy but full restful sleep didn’t come. I went nearly 10 days with no meaningful sleep when I was finally placed on Ambein. That was a life-saver and it worked very well for me, till almost 3 years ago. I began waking up and being restless at 3AM or 4AM every night. I was not able to see my primary doctor in a timely fashion so I decided to see the assistant. (Which I have recently learned is only a nurse practitioner.) She tried to place me on antidepressants when she heard Heather died. After weeks of trying and three rounds of different types of anti depressants that also work for sleep, I demanded Lunesta. Lunesta has never worked right for me and I called and had her add Ativin with it. She wanted me to do Xanax first, so I tried it and after a few months took myself off that slowly and demanded Ativin.  

After I did not continue working at the Disney store, I went to work as an assistant manager at Harkins Theatres. I kicked it right off working over 42 hours a week. After three weeks I was not functioning and changed my hours to just over 32 hours a week. This also seemed to be too much for me as I just could not sleep and rest and I felt extreme fatigue, so I went down to about 15 hours a week. This seemed to be an okay schedule but I was having issues with “brain fog” and doing inventory. This was very hard for me as I have always been good with inventory and could not understand why I was struggling so much with this task at work.

Then came Disney weekend and the Tinkerbell 10K…and I fell like I have never recovered from that event. I was beyond exhausted and hurt all over. It seemed every muscle in my body hurt all the time. I had blood work done and it came back all messed up; so it was recommended that I take some time to focus on my health. It has taken till now to get a doctor to listen to me and then get the right blood work done to accurately diagnosis me.

I have had doctors’ misdiagnosis me because I am a grieving mother. They automatically assume that I am depressed because my daughter died and I need medical help with that. I have news for doctors, not all grieving mothers need drug intervention with grieving, and sometimes we have actual real health issues that need attention. I am very in tune with my body and what is going on so when doctor’s won’t listen I did my homework and looked things up. I knew what blood work to order and I went in strong and demanded they listen to me. Did I ask for this? NO! Can I just keep going the way I am going? NO! Will I let this define me? NO WAY!

I know that I was already predisposed to possibly have this with the insomnia and restless legs. I also have the extreme sensitivity to hot and cold. If anyone has been near me they know right after I eat I freeze even in the heat of summer. I have been known to wear a jacket while being 110 outside. Hot water can actually hurt when it hits my skin and not because I am cold, it just sends pain shooting when it hits my skin. It is also proven that a traumatic event, illness or accident can cause Fibromyalgia to begin with no warning. Do I believe that Heather’s death did this? YES, I DO!

I am working with my doctor and a pain management doctor to try to come up with a drug combo and dosage that works to control the pain, allow sleep but then also allow me to function during the day without dizziness or sleepiness. This has been quite the process. I also have been told by both doctors that my workout is the best thing I can do. The cardio and the weight strengthening I am doing are really good and I can continue to workout since I have been doing the workout for more than 3 years. Of course if I have a day that I just can’t do the workout I will go lighter or go home. I have learned the hard way that I have very different limits now and I need to listen to those limits.

Bill and I have laughed that 20 years ago we were sure that fibromyalgia was “all in the head” of pastor’s wives. This was their excuse to get out of doing things. While I still believe that some women take this too far and become debilitated of their own choice, this is a very real condition. Of course we joke that now Bill needs to become a pastor so I can have this condition. Yes, I am joking, kind of. I have limits now, but I will not allow this to define who I am. I will not be known as the lady with the chronic disease. I am hoping that after vacation I will be able to return to a limited work schedule. I miss the theatre and all the people there.