Fibromuscular Dysplasia

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    Hospitalized in severe pain and EDS was overlooked even though it was on my medical records

    Hello, this is my first posting and I hope that I can explain my situation and reach out to others with similar experiences.

    In November 2018 I was suddenly stricken with the most excruciating pain on the lower right side of my abdomen. The pain began out of the blue and very suddenly. The pain was so extreme that all I could do was scream. I live alone and all I could do was to dial 911 and scream, hoping that my call could be traced. I literally could not speak and the pain was constant. My call was traced and the paramedics arrived. They tried to ask me necessary questions and all I could do was scream plus I have a severe hearing loss (wear hearing aids in both ears) and it was very hard to hear them.

    I was rushed to ER and right from the beginning the nurses and staff were frustrated between my being unable to hear well and speak due to the severe pain. After standard tests they gave me morphine, but it did not lessen the pain. I have two grown children who do not live near me and they are diagnosed with high functioning autism. My other family members have all passed on. I was admitted to the hospital and tried to speak a few words between the constant pain. After they obtained my medical records there was a long list of illnesses too many to mention, but the one illness that was listed most recently was the diagnosis of having EDS hyper mobile, possibly sub vascular. The nurses were angry and callous and continued to tell me to stop crying and screaming. when being in a hospital is it not common for people to be in pain and show it???

    I had no personal belongings and no one to go to my home to gather things. I had an iPhone but no charger with me and the charge was about half gone. I needed to contact my daughter and son and could not due to the pain. I gave the staff members the phone numbers for my son and daughter to contact them. My daughter was able to speak with a nurse and then text me what information she was able to gather. After hours of testing I learned that my liver had a large abscess, I had three gastric ulcers, a massive infection due to chronic UTI infection and sepsis, also severe headache (migraine with aura). There were two infectious disease doctors, and one urologist and gastroenterologist reviewing my case. I needed a PICC line put in to administer antibiotics but when the PICC line was put in it caused a blood clot in my left arm...very painful...all I remember is so much pain. I was strapped to the bed and not allowed to use the bathroom. They put a large napkin beneath me and the strong antibiotics caused my bowels to empty and they did not hook me up to a catheter. The continual exposure to the acidity against my skin from laying in my bodily discharge caused my skin to burn, blister and bleed. I was forced to lay far too long and they did not hook up a catheter either and the nurses were not happy with attending to me. One nurse balled me out and shouted that I should have asked for a bed pan. I told her I did ask for one...there was a button to push to ask for help and when I pushed the button for help no one would come...they were clearly understaffed. I did not know if I was going to live or die, the pain was excruciating. I had a tube put in my side that went into my liver to drain the abscess, I had a PiCC line in my right arm and my left arm was so badly swollen from the blood clot that I could not move it or use my fingers. I had no family there to oversee or bring me much needed items.

    Since I could not hear the doctors when they came to see me there was no one to help interpret things...I lost my hearing when I was 27 years old over a period of several weeks. It was a permanent loss. I wore the best hearing aids one could wear to enable me to hear conversation and I had surgery in both ears. I did not learn sign language nor did my family. Doctors could not explain why my hearing was lost so suddenly. I did well reading lips and dealing with the hearing loss and did all that was possible to fit into the hearing world. So being in the hospital and alone and not hearing the doctors and staff was very difficult and the pain was more than I could bear. I cried often and at times had to call and yell for help asking someone to please help to change me and clean up because of the worsening rash. It was humiliating beyond words. One nurse while she was standing beside me called the doctor and she shouted in an angry tone (and I did hear her) saying that all I do is cry and moan and cry and moan. The doctor ordered pain medication every three hours (dilaudid). There were many tests and some took many hours to complete. There was no sleep. There was no Kleenex, no one to wipe my face, no bed changes. Many of the tests required fasting with no water or food and the tests were delayed so it was many hours without water. When I asked a nurse for a chip of ice she 'no'...

    I did cry and moan but is that something wrong to do when being in sick and in the hospital? Had no one seen other patients in pain too and understood the depths and emotional aspects of being sick and alone? After spending eight days in the hospital I was transferred to a home and kept on a PICC line for 8 weeks and given antibiotics. The nurses at the home were callous and again would ball me out if I asked for help. I was approached by two people who wanted me to sign (right then and there) a document that would instantly place me in assisted living. I had a home and a life and bills and suddenly I am strapped to a bed and told to sign papers and be put away. I did not sign anything. It is sad how people can slip through the cracks, but even sadder how people who are so very sick can be mistreated and neglected. I have nightmares and flashbacks and PTSD. I told doctors and nurses about being diagnosed with EDS. No one ever paid attention, and I do understand that there are few people who have heard of EDS. I am in constant pain every day from the many comorbidities I have due to EDS. I had a brain aneurysm at age 38 and have been taking verapamil (a calcium channel blocker) for over 30 years. The neurologist I saw at that time diagnosed me with FMD (fibromuscular dysplasia)...when I was diagnosed with EDS hypermobile the doctor also diagnosed AS (ankolysing spondalitis) CFS (chronic fatigue syndrome) advanced osteoarthritis, kidney stones, chronic bladder and UTI infection, chronic pain and inflammation and joints that pop out of place, migraine with aura, IBS, hemorrhoids, TMJ, irregular heartbeat and palpitations...too many illnesses to juggle anymore, but I feel the lack of awareness about EDS can leave people in situations that are horrific.

    I hope that some day the medical community will be aware of EDS and its many facets and there will be preliminary tests given when patients have multiple unexplained symptoms. I pray to keep writing and sharing the many illnesses involved with EDS and it's many forms. I pray that people will not fall through the cracks and be told to stop crying and moaning due to pain laying in a hospital bed.

    Thank you for allowing me to share. #EDS

    Question

    How do you get ER to listen to why this is an emergency situation and not just do a ekg and make you wait 4-8 hours in waiting room?

    #FibromuscularDysplasia

    Question

    What is fibermyalg #FibromuscularDysplasia

    I have endometriosis and in constant pain, I have several other things too but how do I ever find peace and understanding, when all I see is negative affects? The pain consumes my thoughts!!!

    Post

    CfS/ME plus Fibromyalgia

    How do you keep up with your home when you are a full time mom, you work from home, your husband travels 25 days out of the month, and your body is trying to destroy you. I moved to a much colder state to care for my parents before they died. I feel like my body is beyond exhausted. I can sleep forever and still be fatigued. I really feel like I’m just a body. To accomplish the daily tasks of life seem so hard lately. Anyone else feeling this especially during the pandemic? #FibromuscularDysplasia #MyalgicEncephalomyelitis #HypothyroidismUnderactiveThyroidDisease

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    Myself

    I have been ill with one thing or another all my life, physically and mentally. As l have aged it has worsened. So now l am 62 with Clinical Depression, Anxiety, and other minor mental health issues, fibromuscular dysplasia, Ehlers Danols Syndrome, Arthritis in at least half of me ,chronic headache, IBS, l've had 2 minor strokes, l can't remember what else. I wish God would take me to heaven where there is no more suffering or pain. No more tears.

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    # all diets are a lie

    Nothing changes #FibromuscularDysplasia #ScrappyLittleNobody THAT NOBODY GETS! #acute chronic sinusitis #intractable chronic migraine # Chronic Fatigue; everyone 🍁 leaves me

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    Spasms

    Am I the only one that has spasms?
    They started about a year ago and have since worked their way all over my entire right side and yesterday I started having them in the left side o f my lower back. I have medication for them and it does help at times but, not enough to let me get out and do anything. #FibromuscularDysplasia #FibromyalgiaDiagnosis

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    Pain B&W

    pain it not black and white it’s all grey there no see no other #FibromuscularDysplasia

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    She us #FibromuscularDysplasia #MentalHealthHero

    She knows our pain physically and mental

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    I had a double STROKE at 41 with no WARNING

    I imagine having a #Stroke at any age isn’t easy, I mean really, it sucks! But having a stroke at 41 is well hell, especially the two I just had, yes TWO! Let me start at the beginning. Some of you may know, some of the story, so bear with me.

    On Monday March 11th I woke up like it was a normal day, I felt like I might be coming down with Danny’s cold, but other than that, nothing out of the ordinary. I started my shift at work, 9:30am on the dot, as usual. As the day progressed, I started feeling more and more tired, I chalked it up to coming down with the cold. I worked until 6:00pm, and immediately laid down for a little nap (totally out of my norm, but I just couldn’t handle being awake any longer).

    I slept for about an hour and a half, got up cooked dinner for everyone, ate none of it, I just didn’t want any. I did manage to stay awake long enough to spend some quality time with Danny, which of course is a must. Around 10:00pm I couldn’t take any more and decided I had to lie back down. No sooner than I got to our room did I suddenly get the most intense #Headache I have ever had in my entire life. And since I have migraines, I can tell you this headache makes every #Migraine I’ve ever had seem like child’s play! I grabbed my head, fell over onto my bed and started crying. Then all of a sudden the whole room was spinning, and I don’t mean I was dizzy, I mean the whole room felt like it was spinning like when you’re on the tilt-a-whirl at the fair. I couldn’t make it stop. And OH BOY… here it comes I knew I was about to vomit, and I couldn’t stand up much less run to the bathroom all the way down the hall…. So I managed to barely Ping-Pong myself between my dresser and bed to the trash can, and there I stayed propped on the wall for who knows how long.

    After what seemed like an eternity, I Ping-ponged myself back along the dresser and bed, this time with trashcan in tow and managed to lie down on my bed. I’m not sure how long I laid there before my husband came in and found me like that. But I know I was unable to open my eyes, or so much as move one of my arms or legs or even my hand without the room spinning again. I vomited nonstop for more than 36 hours.

    I stayed in my room, on my bed for a total of 2 days without moving other than to lean over the trash can. I did not eat, I did not drink. I laid on the same side. I did not get up at all. At some point on Wednesday, I conceded that I may need to go to the hospital, but only because this was the worst stomach bug I had ever had, and I had to be dehydrated because I couldn’t drink anything and keep it down. So I reluctantly allowed my husband and sister to call an ambulance, because I couldn’t move and they couldn’t take me on their own.

    A short but very unpleasant ambulance ride over to our local hospital. Thankfully I didn’t have to wait too long. They put in for a rush on blood work and CT scan, I don’t think they wanted a dizzy, pukey, moody lady yelling at them too long.

    After a rushed CT scan and vials and vials of blood taken the ER doctors finally came in my ER room. They tried to look concerned but honestly I didn’t care. All I really cared about was the pain in my head, the spinning of the room and the nausea in my stomach.

    They said the Radiologist saw 2-4 spots on the back of my brain, but since they don’t any previous scans of my brain, they do not know if they are old or what is causing my current problem. But on the bright-side, they don’t think they look tumors or cancerous.

    I guess I was suppose to care, I was suppose to worry more, but at that moment all I cared about is that they were finally going to give me something for the nausea and pain. All the rest I’d worry about when they stopped guessing and had real answers to give me. I’ve never been one to freak out ahead of knowing all the facts. On the other hand, they were going to keep me and do a lot more tests. I could now send my mom and sister home to get some rest (Jim was home with Danny).

    After a little bit of time I was visited by another set of doctors, neurology came to see me, and they had a whole new theory… I had had a stroke… actually a set of strokes, one on each side of my cerebellum. But I had to have a MRI to confirm it. A ? 2 strokes? Are you serious? I’m 41 not 61? And in my cerebellum? Is that even a thing? (Not the cerebellum, having strokes there) This dizziness has to stop so I can jump on a computer and start researching this!

    And then finally the news came that I was given a room upstairs on a real floor out of the hustle and bustle of the ER. Woohoo, some quiet, or so I thought. Nope, lots more doctors. Apparently I am now some sort of side show attraction. “Come one, Come all, see the 41 year old woman who had the 1 in a million double in her cerebellum!!!!”

    Truth be told, a Cerebellar Stroke, as they’re called, actually account for less than 10% of all strokes! And lucky old me I had 2 of them at once!! So now knowing that, I really was the freak show in the hospital, most of the younger neurologists and neurosurgeons probably had never seen or met a cerebral patient before.

    Anyway, back to my trauma. They were wasting no time at all. My MRI was scheduled for 11:30 that night! Can’t a girl get some rest? A silver lining though, my sister was home watching Danny so my hubby finally got to come see me. But that also meant I had to break the news to him, I may not be superwoman after all. I have to admit, he took the news pretty well.

    I have to be honest with you, I still wasn’t really buying the whole “ thing”. I mean, I’m 41, I can still talk, I can move all of my extremities, I do not have the droop on one side of my face, I have none of the classic symptoms. It just doesn’t make sense; I guess we’ll know more after the MRI.

    The MRI seemed to take forever!! I hate those things. But you know what didn’t take forever? My neurologists popped right up in my room after, with the test results, totally unheard of, right? A double indeed, at 41. Yep, meet Mrs. Freak Show in room 478. Now to find out why…

    But you know what I got this… People have strokes all the time, they get better. They overcome them. I’m a fighter!! I’m superwoman remember?

    Bright and early the next morning a cardiologist came in, and insisted that my heart absolutely must be the reason I had these strokes so young. I must have A-fib, it must have thrown a clot, there must be a reason somewhere in my heart, because all of my labs are perfect (except of course from my extreme dehydration), I am healthy as one can be. The only physical ailment I have to speak of is #Fibromyalgia, and to be honest I don’t even speak of that much, I live by the philosophy “suck it up buttercup”, and go on with my day. So here I am arguing with the cardiologist about how healthy my heart is. I’m insisting it is, he’s insisting he “will find the problem”, I wished him the best of luck as he scheduled tests.

    Over the next hour or so, I had an EKG, and then an echocardiogram, and then an echocardiogram with bubbles. Let me tell you the echo with bubbles it pretty cool, lol. I have never before watched bubbles shoot into my heart and bounce around like a bunch of 5 year olds in a bounce house. It was pretty freaking cool. All tests came back normal; the cardiologist came to my room still insisting he was not “done” with me yet. He was going to put a halter monitor on me for 30 days, and if that didn’t show anything, then he wanted to implant something like a pacemaker, except it would just monitor my heart from the inside for up to 2 years and then we would “surely find out what my heart did to cause my ”. Whatever dude!

    My neurosurgeon decided to stop by, and said he was going to do an Angiogram. That is where they insert a catheter with a camera on the tip in my upper thigh (groin) area and send it through my vein all the way through my heart and up to my brain and see if they can spot the problem. Okay, sure, why not?

    The next morning I watched on the screen as they sent this camera up my vein, through my heart (pretty cool if you ask me) and all the way to my brain, where my strokes happened. You know modern medicine is pretty amazing. I have no idea what I was looking at, but it was pretty awesome, or maybe it was all the sedatives that they were giving me lol.

    Later that afternoon I got another visit from my neurosurgeon. This time he pulled up a chair. I should have known right then that things were about to change in my world. Yes, indeed I had had a double Cerebellar . I had them because I had what was called a vein dissection, or tear. Yes, the main vein that is feeding my cerebellum had a large tear in it. I’d never even heard of such a thing. Oh but it gets better. He came bearing a diagnosis for me. This occurred because I have a rare condition called FMD, #FibromuscularDysplasia. They were able to diagnosis because of the Angiogram. There is no cure, this is a lifelong congenital, chronic condition.

    Remember earlier where I said… “But you know what I got this… I’m a fighter!! I’m superwoman remember?”?… Yeah, I don’t got this… that man may have just as well walked in and strapped a collar of kryptonite around my neck. I am broken!

    I literally can have another at any given time. My veins are weak, not because they are unhealthy and clogged with cholesterol, but because they grew that way. There is absolutely nothing I can do to fix this or them. I can never go to a chiropractor, any manipulation of my neck, intentional or unintentional can cause another . I will be likely be in at least some constant head and neck pain for the rest of my life. Yoga with any type of stretching of my neck is out. This btw, was my go to for my fibromyalgia pain. Oh and if I ever do get a stomach but, I have to check myself into the hospital, because the motion of vomiting can cause my vein to tear again, or a different one to tear. I’m not even allowed to have a bad respiratory infection, because the act of coughing repeatedly can cause another vein dissection.

    I also feel like people don’t believe me. They look at me as though I’m making it all up. I tell someone, anyone that I had a last month and they instantly get that “yeah right!” look. Just because I’m able to walk without a cane and talk without a slur, and my face isn’t droopy. I feel like most people think I’m making it up. I’m getting to the point where I don’t even want to tell anyone. I feel like more people believed me about having fibromyalgia, and trust me I got plenty of eye rolls about that. I think people need to see you missing a limb or have your diagnosis tattooed across your forehead for them to believe you. Trust me, I’d so much rather not have anything wrong than to be going through all of this.

    I’ve never known anyone who had a and could walk and talk right afterwards either! So I get it, but please stop judging me with your eyes and ask me and then look it up. My pain and damage is on the inside. And trust me, it’s there.

    I am truly broken!

    I am Depressed, I am Sad, and I am so ANGRY that I am so depressed and sad. And I am depressed that I am so angry. I am in so much pain. I am so very tired, so very tired. I walk like I’m drunk, even though haven’t alcohol in my system in a dozen or more years. I have almost constant vertigo. My hands shake off and on, sometimes worse than others. This morning, my coffee cup was rattling against my teeth my hands were shaking so badly. I can’t write, because my handwriting is illegible right now. My typing is the speed of a 3rd grader. And I think worst of all I am scared. I don’t get scared, but now I am terrified. I had a near death experience and didn’t even know it. I could have died, I laid in my bed for 2 days after having a . I could have left my husband and my son without me to care for them. That thought scares me more than anything else I’ve told you about here today.

    I had come to the realization that I may outlive my son because of his diagnosis, but the thought of him having to face this world without me is too much for my heart to bear.

    I don’t want pity, I don’t want to be coddled or babied. I just want understanding. Understand that I am trying to adjust. Understand that I’m trying to cope with all of this just like everyone else.

    I am writing this to give a small glimpse into the mind of a 41 year old VICTIM! Yes I am a VICTIM, but I will also be a survivor! And damn it, I’m not going to give up.

    *I have since being home, created a Will and POA, just in case.