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SandraH (@sandrah1)

Fibromuscular dysplasia (FMD)

Heart & Blood Health | Last Active: Sep 11, 2019 | Replies (56)

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@kariulrich

@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say the least. Please know you are not alone in this journey. It takes many years to get use to a FMD body. It is important to find a physician you trust and that can work with you until you get a handle on what your body is telling you. The first few years I was visiting my specialist monthly to understand what my symptoms meant. I was always second guessing myself if I had signs of tia, but with the help with my amazing team of doctors together we learned. You will find out you are you best advocate… do not be afraid to ask questions. I would keep a calendar of symptoms and questions to show my doctor, that way he would get a better picture of what was happening in between visits. Going from doctor to doctor is overwhelming, but necessary when you have a multi-system disease. If it gets overwhelming please let them know, sometime we need a break from the hospital and clinical environment. You may notice that you have more fatigue now, that happens to so many FMDers. no one can tell us why but to me there is validation knowing other patients need “pajama days”. Other patients are a great resource, use us, that is what we are here for. We may not always have the answer but we sure will try to point you in the right direction! What kind of work up have you had for FMD thus far? Have you been checked for brain aneurysms? Hang in there, one moment at a time!

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Replies to "@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say..."

Hello, I’m so confused though about all of this. I keep going from Dr to Dr for different tests. Today I went to respiratory and was crying, for no reason. I feel so short of breath all the time. Tired too. I can’t even workout cause I feel like I’m dying. I want it all gone. Granted I know now that I’m 50 things happen but lol. My boyfriend doesn’t get it. He pushes me to work out all the time. I keep telling him I can’t. He means well but ugh. What kind of work up do I need for fmd? I see a cardiologist, a kidney Dr, oh and I forget a lot of things too. Is that normal for fmd or just age lol thanks for reaching out.

@sylviam This disease is confusing! I believe both Mayo Clinic and Cleveland Clinic are recommending a one time full body CT scan to check for vascular beds affected along with aneurysms. It is OK to cry! I have had this disease for over a decade and I still cry… I don’t believe it is for no reason. I think when our body and mind gets overwhelmed with it all we cry and that is OK! I get short of breath walking up a flight of stairs or talking on the phone, it comes and goes. Some days are better than others. One suggestion that I have that I believe all newly diagnosed FMD patients should go through is cardiac rehab, although we have not had a typical MI we have the same vascular problems and concerns, I have found it to be beneficial. Unfortunately getting proactive treatment depends on your team of doctors. Exercise is good, however you must talk to your vascular doctor about any limitations. This is a systemic disease and we do not recover as fast as most people. We can have a good day and it could take several days to recover from that one good day. This has nothing to do with you age and everything to do with the disease in my humble opinion. Maybe your boyfriend could join us here on connect to give him a better idea of how we have to modify ourselves after diagnosis. Forgetfulness is common amongst the FMD community, although the medical community has not figured out why this happens, we call it brain fog. It just takes us a little longer to get words out, or remember certain things that came so quickly prior to diagnosis. You will find that FMD patients are very intelligent and educated on their disease. We adapt quickly but it is not easy. You will go through many physicians until you find the team that is right for you, don’t get discouraged if you feel dismissed at times. This happens, and we have each other to lean on. Our disease is invisible, we do not look sick or unhealthy on the outside and that makes is very difficult for others to understand what we are going through. Give yourself permission to rest, to cry and to regroup and fight again. Gentle hugs! Oh…just a FYI, here is a list of my team of doctors I see: Internal Medicine, Neurology, Nephrology, Vascular Medicine, Vascular Surgery, Genetics, GI, Cardiology, Women’s Health, and I have a great therapist when I need her. I am sure I am leaving a few specialist out, but you get it…we all have a tremendous team of physicians!

Hi Kari, so I had been gone for a while. turns out i have another dissection. it was discovered when i went to a scheduled appointment for a ct scan cause i thought it was bad heart burn, i ended up in the emergency room on monday night for 10 hours and left with no kind of anything. i received a call from my primary which said to go to e.r i let them know i went that night because the hospital had called my primary office and that’s what the dr oncall had suggested. they then said they were going to get the notes and would call me back. i was informed to call my vascular dr. which im waiting for a call back now. ugh so frustrating

@sylviam Thank you so much for letting us know!! I am so sorry to hear about your dissection! Where did the discover the dissection? Please let us know what you vascular doctor says! I understand your frustration and my heart goes out to you. This scenario is happening to often to FMD patients. I know your mind is on this and how to heal. I am curious if your vascular doctor will want to do any intervention for this dissection or let it heal on its own. Do you have a medical ID that you wear? Sending hugs and well wishes.

@kariulrich i know i’m all over the place with this. sorry. i left a call for the vascular so they’re checking the hospital notes and are to call me back, i didn’t hear from anyone today. this dr will be new to me as my vascular that did my previous procedure left boston mass general hospital for a position in new york. i don’t know much yet. i don’t even know if its part of the previous aortic dissection i had in 2015. thanks for hearing me out. no medical i.d. for what? from where?

@sylviam aortic dissection, that is a big artery! Do not hesitate to go back to the er if you have symptoms before you hear back! Sorry I was not clear about the medical id… a medical ID bracelet, in case of an emergency, something that lists you diagnosis. So you go to Boston Mass gen, they have a great vascular department, happy to hear you are in good hands.

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