Living With Fibromyalgia (which Isn't a Joint Disorder)
Posted: Tuesday, February 22, 2011
by Cheryl Collinson
http://www.lulu.com/spotlight/cherylk55atyahoodotcom
Firstly, I would like to clearly state that Fibormyalgia isn't a joint disorder! In fact, I was dissapointed that FMS wasn't an option under "health". A brief medical description of FMS is as follows: "Inflamation of the fibrous or connective tissue of the body. Coupled with widespread muscle pain, fatigue and multiple tender point, FMS can be debilitating". Of course there is more to the medical definition but those of us that suffer with FMS already know this. I am assuming if you are reading this, you have FMS or know a loved one who has FMS.
The next morning, I awoke in sheer agony. From the hairs on my head to the tips of my toes, I was in agony. Feeling like I had been run over by a train, I rang my Doctor. In the day leading up to my doctor's appointment, the pain became a bit more localized. My shoulders, elbows, upper and lower back, hips, knees (back) and ankles were in unbearable pain to the touch. Perhaps it was the emotional distress I was feeling and it manifested in the form of aches and pains? Perhaps I had Arthritis? All I knew was, I was in serious Pain!
During this time I was a Secondary Educator but there was no way I could get out of bed, let alone go to work. I rang my Principal to inform him of what I was experiencing. he advised me to take a few weeks off thinking perhaps that would solve my problem. I too actually thought, in a few weeks I will be fine. Surely this is just from the stress of my Father passing and I will get past it. I was wrong! The pain became increasingly intense day by day.
However, the time came around for the doctors appointment. Viles of blood were taken, a reflex tests was given then I was told to "Go get some Saint Johns Wart as this should help with your moods and pain." Believing my Doctor knew best, I left and went to get his recommended "natural" remedy.
Later, all the blood tests came back normal. I was stunned. My doctor sent me to get an MRI as well as a full body scan which was all done within 2 weeks of the blood tests. I ws also sent for a spinal tap to rule out Multiple Sclerosis. When the results came back normal I started questioning wether I was a hypochondriac! Could I be making all this up? Could I be making myself in this much pain? After all, I couldn't sleep, my appetite completly went and I lost so much weight that I was horridly thin. Could I actually be convincing myself I was in pain? I began to question my sanity!
I asked repeatedly for pain medication which my doctor was hesitant to prescribe. I clearly remember telling him, "If you don't write me a prescription for pain meds, I will get them elsewhere." He wrote me a prescription for Ultram which in turn made me vomit and I thought, "Do I really need another symptom? I went back to the doctor and said, "This Ultram is making me ill so I need you to prescribe me something else." Again, more hesitancy. Doctors are so afraid to prescribe narcotics because of the addiction issues but at the time, addiction was the least of my concerns. I wanted relief from all the pain!! My doctor referred me to a pain specialist and he gave me proper narcotics to deal with the symptoms of pain.
As a result of my doctor (GP) inability to help me, he sent me to a Rheumatiod doctor and thank goodness for that!!!!!!!! This doctor looked at my previous tests and said, "It's right here in your MRI Cheryl!" "There is a part of the brain which perceives pain that can appear altered on an MRI and yours clearly is. You have Fibromyalgia!" Shocked, relieved and numb I said, "I have what? You mean there is something wrong with me and it's not all in my head?" The relief of a medical professional acknowledging my pain was overwhelming. I must have sat in that chair and cried, (for what seemed like hours) for 5 minutes.
Consequently, a proper treatment began. I was put on medicaion to help me go into REM sleep so my body could restore itself while I slept, depression medication, (I was deeply depressed and was becoming suicidal) and a variety of pain medication until we finally found one that worked for me. I owe this doctor my life. He validated my pain!
Coupled with the fact that because people can't see pain, I didn't get much compassion, sympathy or concern from people for a very long time. I felt agony, isolation and confused. I now know these are very common ways to feel if you have FMS. Due to the fact I had no cast on my leg (arm or anywhere) some people felt I was putting on an act to gain sympathy. I even had a collegue say to me, "Cheryl, your Dad died, it happens. You need to stop seeking attention and deal with your emotions."
Above all, we must support each other. Not all illnesses are "visible". Some of us suffer in silence, some of us suffer with pity and some of us just can't cope at all. Some days just getting out of bed is a chore. Some of us look perfectly fine to you but on the inside we are hurting both physcially and mentally. Just because you can't see something doesn't mean it isn't very real!
Conversly, some people are compassionate, loving and giving. Support can come in many forms. I found support in a FMS chat room! There are many support groups out there and even if your not one of those people who likes talking in front of "strangers", remember, these are the only people who know exactly how you feel because they feel the same as you! Look in your local phone book, libraries,internet, etc. There are people out there who care, trust me. You must reach out and help yourself frist before anyone else can help you. Don't take no for an answer from a doctor. Ask questions, push for answers and don't leave until you get them! Take control of your life. Don't let others (doctors) who think they know what they are talking about put you off the path of learning to live with your illness.
Nevertheless, I have FMS. As I earlier stated, I have lived with FMS for 12 years. It hasn't been easy and I could go on and on with stories about my journey that would shock you to your core! I had to dig deep inside to find the strength (I never knew I had) to fight for me! Out of the 13 trigger points of a FMS patient, I have 11 in full swing on most days.
Earlier, I was labled, "Disabled" for 2 years. I hated it. I hated parking in the "disabled" car parking spots and having people give m dirty looks. I knew what they were thinking. They didn't have to say a word. Who does she think she is? Look at her. There isn't anything wrong with her. She's lazy. I heard the comments mumbled by people behind my back and to my face. I always felt a need to defend myself and my condition but no more! Yes, on the outside I look just like any other normal person going about their day but on the inside I hurt!
Subsequencly, we discovered that my FMS was brought on by an extreme trauma. The exasserbation of my Father's death was very hard on me. I kept all my feelings inside and therefore my body reacted. FMS can be genetic as we discovered that both my Mother and Grandmother suffered in silence with FMS! Above all, know your family medical history. If you don't know, ask. I just happend to remember that both my Mother and Grandmother were always saying they were in pain but during their time it was, "all in their heads." As we now know, it's not in our heads. it's as real as we are living and breathing. You are not alone, trust me, you aren't. There are millions of us out there suffering!
On the whole, the facts are 10 million American women have FMS, May 12th. is National Fibromyalgia Day (America), FMS can remain undiagnosed for months or even years, (don't let this happen to you!), 90% of us suffer with fatigue or tiredness, there are psychological symptoms (depression, despair), there are no definitaive tests for FMS. FMS is diagnosed by ruling out other illnesses with similar symptoms, 2-4% of the population have FMS, Medical and non medical treatments are used to treat FMS, exercise is important. Walk every day. Even when you feel like you can't move, try to go for a walk even if it's for 2 minutes and work your way up to a comfortable level that is right for you. What is right for one FMS patient isn't the correct treatement for all FMS patients. YOU know your body better than anyone therefore do what is best for you.
In the end, I researched Fibromyalgia thoroughly on the internet. I spoke to my Rhumatiod Doctor once every 2 months, support groups. I can't emphasize enough how important it is to take control of your life back! Don't let FMS define you! I am now back in Secondary Education (18 years now) and maintain a prettty normal life. (Normal for me) I have recently become a published author and am currently working on my next book, Living with FMS. I have a good friend who I met 12 years ago (internet chat FMS room) whom I have stayed in touch with all this time. I am hoping he will co-write with me as he has been a FMS, CFS (Chronic Fatigue Syndrome) sufferer since his teen years. He is truly an inspiration!
To sum up, look after yourself. Make sure you get pleantly of rest. If you are working and are finding it difficult to cope, speak up. Employers have a responsibility to accomodate you and your illness. Support,support,support!!!!!!! Find somewhere quiet daily to gather your thought because you will find that you'll experience Fibro-Fogs, this is where our brains become overloaded and we become confused easily. Give yourself a break. Your pain is real and your not alone!!!!!
Please feel free to post comments, concerns or questions. Clearly, I am not a Doctor but I do know my FMS and if I can help one person who can help another well then.....we can all make a difference! *Getnle hugs to my fellow Fibromites*
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