Fibromuscular dysplasia (FMD)

Hello, I have fmd. I'm 50 yrs old and had an aortic dissection in nov 2015. Then aug 2016 had a stroke. I'm kind of confused with all that's happening to me. I don't know what's happening actually. I was perfectly healthy now not so much, i go from Dr to Dr and it's annoying. Any advice?

@sylviam, thank you so much for reaching out to Mayo Clinic Connect, I have so much I would like to share with you about FMD, I have been diagnosed for over a decade and have learned a lot in that time. My son just graduated tonight, so I am a bit tired to go into great detail, and I want to give this post the time it deserves, so please forgive me, but I would like to answer when I have more time, so I can focus on giving you the best advice I have to offer. I hope you forgive me for being brief tonight. Just quickly, I have widespread FMD with brain aneurysms and avm, I also had open MALS surgery twice. And ehlers-Danlos syndrome, it sounds like a lot, but for some of us there is a connection. Have you been checked for EDS? Or any other connective tissue disease on top of the FMD? Would like to hear more about your symptoms. I will try and give a better picture of FMD tomorrow! Remind me if I forget!!! Thank you again for posting!

@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!

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!

@bluegiraffe I waned to welcome you to Mayo Connect! I hope you see this message!! Would love to hear your experience with FMD if you feel comfortable sharing it. I have widespread FMD with small brain aneurysms and a AVM. I still have my pajama days despite having years of experience with this disease. Hope you are doing well and again welcome to the community.

I am Cher and I have Fibromuscular dysplasia (FMD). I started spiking Blood pressures clear up to 26os/180's to 200s' in 2010. But mine where intermittent. I was sent to Mayo 2012 because I also have Coronary Artery Spasms (CAS) and in 2010 I started the sever hypertension. Tachy/Brady/ and hypoxia which all set of the CAS. Mayo Dr. Abhiram Prasad got the Spasm down some with several actions. Removed Metoprolol is a beta-blocker they had put me on for the Tacycardia and beta blockers make CAS worse. Then he changed med. Did heart caths to confirm the CAS and he did. Unfortunately he left for UK before they figured out why I had sever hypoxia or why the BP's Spiked. I diverted a plane coming back from Mayo and so went up the chain of Cardio & Pulmonary physicians at Colorado University an they then sent me to National Jewish Health (NJH) Denver. So they confirmed the Fibermuscular Dysplasia and I have had 2 angioplasties on that. Mine is complicated because my renal arteries, vessels in eyes & carnium all spasm. I had tia from the ones in head as well. Then they figured out in 2015 when I was on 7-12iters of oxygen with the first visit to NJH I have Tracheobroncho Malacia. I had Tracheobronchoplasty for that in Dec 2015. SO whenever the renal arteries start to get narrowed the artery spasms send me in to Hypertensive Emergency and they take me in for angioplasty. SO right now they are doing a workup because I have many symptoms for autoimmune and think I have Relapsing Polychronditis. SO right now FMD is calm but the autoimmune is setting off the Angina and CAS.

@cherfenn very nice to meet you and thank you for sharing your FMD experience with us! You have been through a lot and I admire your perseverance. You may have mentioned this in another post but do have any experience with Nitro for your CAS? Not sure if that is a treatment or not, I found that long acting nitro did not get along with my Fibromuscular Dysplasia and it would give horrific long lasting headaches, however sublingual nitro worked well, I would get a headache and would have to lie down while taking it but after 15 minutes I would feel a lot better. Very curious are you on Cozaar?

I do not get headache unless I am on 65 or more nitro drip been using it so long. The Nitro calms down the renal artery spams as well they kept me on nitro 4 days until they could do angioplasty in March when I was having hypertensive crisis from FMD
IMDUR ,isosorbide mononitrate 120 , verapamil 180 mg,spironolactone 25 , NIFEdipine 30 mg
aspirin 81 mg , arginine HCl (L-arginine) 1,000 mg 3x 3 times daily. CRESTOR Take 5 mg
When Angina Coronary Artery Spasm (CAS) epicardial coronary spasm, Fibromuscular dysplasia(FMD) , Tracheobronchomalacia (TBM). After 2 NIFEdipine 10 mg gel cracked under tongue with 3 nitro sprays inbetween if angina does not stop go to ER or call ambulance ASAP.. Also take isosorbide dinitrate 40 mg tablet known as: ISORDIL PRN for Angina when not close to hospital or Ambulance.

I should say I do not get headaches with the nitro but right now for three weeks I have a headache that will not stop night or day no mater what I take. I figured it was artery spasm at first but now I am starting to worry I am having double vision. But the Rheumatologist said the Relapsing Polychronditis causes inflammation of arteries and head aches. But I am a but worry since I already had TIA and thinking someone needs to perhaps to a scan of head vessels and carotid arteries. They had checked them over two years ago but I know that can change at any time.