Fibromyalgia
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Fibromyalgia: My Story
This is an ongoing story detailing what I have been through over the last 2+ years. I decided to write about my experience and disease process, not to complain or get pity from strangers, but to work out my own frustrations and help others who are going through the same frustrations. I am not a doctor, just a person who is suffering with daily pain trying to get my life and mind back.
Pain is normal. It tells your body there is something wrong which needs attention and to take care of yourself. I think too many people are frustrated by the little aches and pains, expecting a pill to not feel any of it. Life cannot always be pleasant.
Then there is a point where pain becomes abnormal. The type of pain of cancer, breaking a bone, or losing a limb; those are obvious and those who suffer those types of pain gain sympathy. There is also the pain of loss and depression which can manifest with physical symptoms; all too often you hear of a widow greiving a spouse only to end up dead within months. There is also the abnormal absence of pain when someone feels nothing where a normal person would react.
Fibromyalgia is an abnormal pain. There is often no inflammation or any physical manifestations or tests to prove one is in pain, but it is real and chronic. There may be good days when the sufferer will feel normal, but there are also bad ones when the pain will not let up. It is mostly thought that the pain felt is a result of overactive nerves that cannot stop sending pain signals.
Life is good. Sure there were ups and downs that go along in a troubled marriage, raising kids, living with in-laws, trying to run a business, and going back to school. I was busy. Having hypertension when I was a teenager and problems where my heart would race out of control seemed to go away by the time I was 20. I have always had a large thyroid gland, but every time I went to the doctor and they commented on it insisted on running a test which always came back negative.
In my late teens, I was going through a rough time. Misdiagnosed time after time and put on rough medications, I ended up being diagnosed in the end with post traumatic stress disorder, a far cry from being labeled schizophrenic initially. One of the habits I developed as a child was cutting, a self-injury disorder where I would express my frustrations on my skin; something that I am always fighting the urge to do.
I also had a tendency to get sick easily. If the kids or their friends came home with a bug, I would not only get it, but stay sick three times longer. Asthma has been a chronic problem with me ever since I had chicken pox when I was 21 years old. I used to be highly allergic to cats and dogs, but fortunately I outgrew that and hoped the asthma too would be a phase. Although as I got older I became lactose intolerant and had the same symptoms of that whenever I had any form of poultry. Certain acidic foods would give me rashes in my mouth like pineapples. I had allergies to mold, dust and grass; if I even sat on the grass it would result in hives.
Other than that, I was relatively healthy. Never broke a bone. I didn't have any other serious illnesses. I used to walk everywhere when I was younger. Walking 25 miles out of boredom was something I could do in an afternoon without much thought. I was on the track team in high school and loved to run. I used to love to dance. My younger days were much more active. Then as I got older and became a parent, I slowed down.
When I got married, I was only slightly overweight. By the time I had my second child, I was morbidly obese. I stayed at home with the kids and ran my own business, although very busy, it was not physically active. I got headaches a lot. I developed carpal tunnel syndrome from using the computer sometimes up to 16 hours a day. There were many nights where I could not sleep at all and others where I was told I snore very loudly and suddenly stopped breathing. Sometimes to de-stress, I would walk around outside and come back with many bug bites from ticks and mosquitoes because they see me and target me as a tasty meal.
I am also a regular blood donor. By giving blood every 60 days, I feel I am doing my community service by saving lives. I should have known something was up when two times in a row I was rejected for being anemic, but figured I would take some iron pills and try again.
One might say I have many of the risk factors common in fibromyalgia: middle-age female living with a stressful situation, obese, and sleep problems. However, this syndrome is not the same in everyone who may not have any of the associated risk factors. In fact, many people still think of this as a disease classification of last resort when they can't figure it out or worse, that it is all in one's head. When I decided to seek help, the thought of fibromyalgia never crossed my mind.
I was talking to a friend on the phone and all of a sudden my heart felt like it was racing out of control. I had to end the conversation suddenly because the pain was intense, almost like the feeling one would associate with a heart attack, but I knew it wasn't one. It was something I never felt since I was a teenager which was a result of high blood pressure making my heart go into spasms and corrected with a short course of Caduet along with a statin to help control the cholesterol build up, and something to control the blood pressure.
I went to my PC doctor who was about a mile away and told him about the symptoms. He asked me some personal questions after checking my blood pressure which was high and ran a blood test, then dismissed it as a panic attack after seeing some fresh self-inflicted cuts on my arms and legs. He gave me a prescription for Cymbalta. A few days later I got a call about the test results and he said I was very anemic and gave me a prescription for iron pills. I asked if it is possible that anemia could cause heart palpitations, he said that was unlikely and it was only a panic attack (although research showed that anemia does cause heart palpitations, it can also be a sign of mitral valve prolapse [occurs when the valve between your heart's left upper chamber and the left lower chamber doesn't close properly] which is usually not life-threatening, but can make the heart skip beats).
Then it happened again, despite being on the computer doing my work on a subject I loved, HTML class. There was no anxiety going on that day. I wasn't worried about anything. I was taking the iron and the Cymbalta. That time the heart skipping beats was not letting up, so I went back to the doctor the same day. He told me to continue with the iron and upped the dosage and switched me to Lexapro. I was then scheduled to see a cardiologist.
I took a battery of tests including a stress test which I could not finish as I could not last more than 30 seconds on the treadmill, so they gave me the nuclear stress test that was excruciatingly painful. They also gave me a test where they went through an artery in my leg, ran a catheter up to my heart, and took pictures. Everything was normal. He sent me back to my PC doctor.
I was hesitant about going back, but when I tried to donate blood again, I was still anemic. I asked him about it and then he asked about my monthly cycles which were apparently very heavy, but since I was that way for a very long time I assumed it was normal for me. He referred me to a gynecologist and after being examined by him, he referred me to an oncologist gynecologist. She spotted fibroids and pre-cancerous cells and gave me several options. I chose to have a total hysterectomy thinking if everything was gone it should permanently end that problem. So two days after my 41st birthday, I went in for surgery.
Recovery was difficult. My kids and husband needed me, so getting rest was next to impossible. School was still in session and my business wasn't going to run itself, so I had things to do and could not devote too much time to rest. Unfortunately, that led to three of the stitches busting open and profuse bleeding. Two ER visits and a follow up trip to the doctor, the bleeding stopped and the stitches all healed, but the scars ended up looking funny.
I was expecting to go through sudden menopause. Didn't get hot flashes, but I had some intense memory lapses, headaches from hell, extremely dry skin and mouth, mood swings, constant dizziness, and twitching/trembling in my hands. All were common for menopause, but were also common for fibromyalgia.
Then I developed a sharp pain in my upper right abdomen along with nausea, vomiting, and diarrhea. I went to the ER thinking I had food poisoning. I brought with me the medication I was taking. After running tests, they determined it was not my gallbladder or liver or the flu or food poisoning. The doctor commented that I was slightly anemic, but suggested that the dose of iron I took was way too high and could be causing an upset stomach. I was also taking a combination of Tylenol, aspirin, and ibuprofen for the pain from my surgery that was still there. The doctor then suggested I had a stomach ulcer and recommended me to take Lexapro, gave me something for the diarrhea and nausea, and to calm my stomach. He told me to follow up with my doctor.
At this point, I was feeling frustrated. I didn't know what else to do. The pain was always there and so was the diarrhea and nausea. I asked him if it was possible this was related to the surgery, he said probably not. The PC doctor set me up to see a gastroenterologist. I was given an exam; he took blood and then set me up for an endoscopy/colonoscopy. I had a CT scan and an MRI. When the results came back, he determined I had a bleeding ulcer and gave me medicine for that and referred me back to my PC who suggested I lose 25 pounds and come back in for a physical.
Both of the doctors seemed to dismiss the idea that the pain in my upper right abdominal area could be related to a nerve that may not have healed after the surgey. In my mind, if there is no inflammation and the tests show my liver is fine and there is no other organ in that spot, it must be a nerve that could be compromised, after all, there were two unevenly healed scars from the surgery that were both less than two inches away from where the pain was intense.
I stopped taking the iron and began eating liver on a regular basis which allowed me to give blood again, but I felt crappy most of the time. I tried to start a diet and even began to do a prolonged fast which made things worse. I tried to exercise, but could not last longer than 5 minutes of walking. So I went back to the PC and when he said I was just depressed and all of this was a manifestation of my depression, I refused to see him any longer.
I don't know about anyone else, but I am highly in tuned with my body. When I was going into labor with my daughter, for the first 6 hours I let them know I was having contractions so they put things on me to measure them. The machine was not picking them up and they said it was all in my mind and would NOT give me pain medicine for it. At the sixth hour of labor and them not being able to tell I was in labor since I was also not dilated enough in their opinion, they were coming to send me back to my room to discharge me in the morning. Then they saw her head sticking almost out and had to rush and carry me into the delivery room. Without pain killers, they gave me an episiotomy and yelled at me for screaming.
So when I felt physical pain and the tests could not find anything and it must be all in my mind, I was incensed. I had too much going on to want to give up on life and be a recluse in bed most of the time. I was not crazy, but getting depressed because THEY couldn't figure out what was wrong. I was not depressed therefore the depression was causing these symptoms, but was getting depressed which made the symptoms I had feel worse.
Some of the ladies who work with my husband recommended another doctor, so I went to see her. She was personable and thorough. She ran every conceivable blood test my insurance would allow and set me up for a bone density test and mammogram. She also set me up for several MRIs and CT scans. She couldn't find anything, but promised me she would stick with me until she can find out what was wrong. She also dismissed the idea that the pain could be a result of the surgery. In the meantime, I cycled through at least 18 different medications with her; some worked and others did nothing.
The only thing she could initially confirm is high blood pressure and high cholesterol with non-alcoholic fatty liver. She gave me medication for that and the nausea and diarrhea. She suspected fibromyalgia from the start and put me on Lyrica. Wonders of wonders, on Lyrica the pain in my side stopped. When I went back to her, she told me of her suspicion of fibromyalgia and explained to me she would have to rule a lot of other things out first.
While undergoing her care, new symptoms were developing; a severe depression with suicidal idealization, side effect of Lyrica. She gave me Pristiq to help with the depression. Then my blood pressure got dangerously out of control; a side effect of Pristiq. So she gave me Clonidine which sent my blood pressure from 235/196 down to 52/35. The Clonidine was wrecking havoc with my memory, balance, concentration, and I suspect was what gave me seizures (although they are still running tests on me to determine the cause).
Living in an emotional abusive situation, my husband was growing impatient with me because I was always sick, lacked energy, was always in pain, and was unable to do much. He kept pressuring me to get a job to help out with finances and said unless I had a job he would not even consider moving out of his mother's house. Living there was a source of stress that was making things worse and he refused to see that, so I got to the point where wishing for death on a regular basis was my norm. I wanted to do more work on my own business, but didn't have enough energy for that as I was already struggling with school, so I didn't see how I would get a job and keep one and even though I tried, no one would hire me.
I noticed when I was at the computer for long periods of time, or playing a video game, or cleaning the freezer, or going anywhere cold; my hands (and sometimes my toes) would start to get numb, tingle, and turn stark white, almost like a corpse. The rest of my skin was a normal color. Then it would start to turn blue and almost immediately start to sting really badly then blood would rush into the area and become almost a purplish-red. I didn't know what to make of it, so I brought it to my doctor's attention and she told me what it was. I had Raynaud's Syndrome, something I thought was odd. It was another confirmation in her suspicion of fibromyalgia.
I can see how one might think the symptoms of fibromyalgia might be in one's head, but there is no way I could make that last one up. I never heard of it or seen it happen to anyone before. I even took pictures of it one time so people who thought I was some sort of hypochondriac could see the physical proof that something odd was going on.
I was a mess and my husband was extra cruel to me during this time. He was getting impatient and wanted me to be fixed and insisted I look around for another doctor because this one wasn't doing anything other than giving me drugs, running tests, and speculating what might be wrong. I spoke with my doctor about the situation I was living in and she agreed that it could be the cause of many of my problems. I left with the kids to go to a shelter and almost immediately started to feel much better, although I was still feeling pain, nausea and diarrhea. My blood pressure was still high, but under control. At least my cholesterol was finally under control. I still had constant headaches and sleeping trouble.
Then there was a really bad period of time while on Clonidine that I could not remember whole chunks of time. Apparently I my husband gave me $500 to pay a bill. I don't what happened to the money, but the bill was not paid and I had no clue as to where the money went. He didn't believe me and berated me over it, even after counseling, he says he is trying to believe me although it makes no sense to him. It is frightening to me to not know. I stopped taking that drug and threw the rest out.
I was sent to a neurologist to investigate the nature of my "seizure-disorder". He was skeptical to call it a seizure or to accept fibromyalgia as a diagnosis until he could rule things out. In the meantime, he labeled the incident as a blackout with seizure so as to not pin me down as having seizures, but he also suggested I do not drive for 6 months after having an incident and any time I had another incident to start the count again.
I had another MRI and an EEG and then a sleep study. My brain and brain activity is normal, the model of a near-perfect brain, but I still shouldn't drive. The sleep study showed I had severe obstructive sleep apnea (apnea-hypopnea index of 90, 90 incidents in an hour).
The sleep doctor put me on a CPAP machine which makes sleep quite difficult and noted the extra pain I had on waking up and trying to get out of bed in the morning. My regular doctor ran another serious of blood and urine tests to investigate if there was any sort of rheumatoid arthritis going on. With negative tests, she feels safe to diagnose me with fibromyalgia. The neurologist confirmed the sleep disorder, widespread body pain in all 18 of the 18 points, and hyper-reflexia. He is of the belief that if I lose weight and get sleep, he will revisit the topic of fibromyalgia, but for now does not want to stigmatize me with that either.
Having the last confirmation or not is a moot point to me. There is no cure for fibromyalgia. One just has to find a way to work life around it. Some days are better than others. Some days I just want to jump in front of a speeding train. There are a lot of worse things that can happen and I am not completely convinced of the general consensus of my doctor and the sleep doctor. I knew something was not right with my body, even though my PC doctor dismissed me.
My personal theory to my "fibromyalgia" is that when I had a hysterectomy and made the incisions, a nerve or two were cut in the process or tore during recovery which resulted in the nerves sending signals to my brain, but having had the pain for so long unresolved my brain became hyper-active in feeling pain all over. I believe the hypertension and cholesterol are a result of heredity and that being obese and menopause is a factor in many of the other problems. Of course, none of my doctors have reached my same conclusion and insist it is either fibromyalgia, something else, or just in my head.
I know I have three out of four of the "Fatal Four": obesity, cholesterol, diabetes, hypertension which means I have an increased risk of an early death from heart disease, cancer, stroke, diabetes, kidney disease, Alzheimer's, and other things, but I also know many of these factors are things I can do something about. and plan on going through a gastic by-pass operation. I know I am in constant pain, but for the most part live around the pain as the Lyrica stopped being effective and the Savella does nothing. I know if I take any NSAID it will give me ulcers and taking Tylenol will make the nausea worse. I know if I do not take my pills for high cholesterol, blood pressure, nausea and diarrhea, they will come back with a vengeance. I know if I stay still too long, my joints and muscles will become rigid, stiff, and painful and waking up in the morning will always be hard. I know I must write things down before I forget them and try to keep to a schedule or I will become overwhelmed. I know if I get too cold or stressful, my hands and toes will change colors. I know if I continue to sleep without the CPAP machine, I will continue to have sleep interruptions which can lead to a stroke or heart attack, however, I just cannot sleep with that damned machine. I know to stay close to home or else I might get lost. I know I need to take better care of myself because no one else will do it for me.
Life is good, really!