Living with Fibromuscular Dysplasia

Since birth I have had intermittent excruciating pain in my legs and arms (my arms up until around age 20) and restricted movement in all joints. As I have no swelling, it has never even been checked into by doctors.

Almost 2 years ago I started having episodes where my right side of my face droops, eyelid especially and have difficulty with speech as my tongue pulls to the right. I don’t know if it’s all a part of what is happening but I experience difficulty finding the correct words to use sometimes and have difficulty thinking clearly. This comes and goes but when it starts, it can last for days or subside within hours only to return a few hours or a day or two later.

I am also experiencing extreme heaviness in my limbs, have a swelling on the inside of my left knee which hurts when I walk but seems to subside when I rest my leg. Alot of the time I am so weak all over my body that I just sort of flop over and any movement of my arms, legs or neck is extremely hard. Have been sent to the U of A Hospital here in Edmonton to the Emergency department at least twice by doctors but overheard by a doctor outside my cubicle that I was a “make work program” and was told to go to the psychiatry department.

This is not in my head and I feel so upset at the implication. My daughter and boyfriend were also so upset when they did this to me. I am now on the waiting list for the past year to see a movement specialist and have been unable to work for a year and a half and been denied disability benefits by both my bank and through my work. From the beginning (January 2007)I have been telling the doctors that with my right side of my head symptoms, I go to sleep ok but often wake up with the right pupil fixed and a different size from my left pupil and the right side of my head hurting in the temple area and feeling disoriented. This lasts for about an hour and then progresses to severe right eyelid drooping and right side facial drooping and drooling out of the right side of my mouth. I have questioned the doctors on the possibility of something being pinched as I sleep as I have had restricted mobility in all my joints since birth. I know that when I sleep I hold myself in some pretty strange positions in my neck and arm areas.

When reading about Fibromuscular Dysplasia, it seems to fit. My legs and feet have mostly been purple with white spots most of my life and I am always cold. I rarely sweat but have had 3 occassions in the last year which lasted approximately a month each where every few minutes I break out into a sweat so bad my hands can’t hold anything and my shirts actually get wet and I can wring out the water. The first time I sweated like this for a month, a swelling (pocket of fluid) appeared on the inside of my left knee and the sweating seemed to stop within 24 hours. The pocket is still there and the doctor’s response is that it is very strange. The swelling is still there and I don’t know if it is the cause of the constant pain in my left leg.

I don’t know if this was a coincidence but on another occassion, I was kept up all night with sharp pains in my right arm only to find the next day that there was swelling on the inside of my arm from my elbow almost to my wrist. I have had sharp pains jump in different areas of my body, sharp enough to make me cry out. The pains are like pulsing pains and the worst has lasted a couple of hours in the same location, my upper left arm. I do not have a diagnosis yet, it’s been 2 years and a neurologist a year ago stated that I may be having TIA’s, a molecular or genetic problem but checked nothing out. In the end, he said he had no idea as to what was going on however had another lady with similar symptoms in her legs and still did not know what it was. He did however state to my disability insurance provider that it may be psychological so I have been denied LTD benefits and have had no income since July 2007.

I do not know what is happening to me but I do know it is not psychological. Nobody has ever checked my circulation however a chiropractor I seen a year ago quesitoned whether I had a circulation problem. The medical doctors won’t listen and my only advice is to be careful with my neck. I have had a CT scan and MRI on my head showing 2 possibly calcification areas. I am 46 tomorrow, have a sister also with lifetime restricted mobility but not as bad as mine, the next youngest sister with Lupus and a younger brother experiencing symptoms similar to mine who has also been told it is psychological. I am a very intelligent, logical, woman and know that whatever is happening to me has taken away my job, my lifestile and just need help as I cannot find a way to fix this myself as I want to resume my life.

Fibromuscular Dysplasia seems to be something showing alot of my symptoms but how do I get a doctor to listen? I am to be checked next July for dystonia. I have large red blood cells, positive Hoffmann’s sign. I am afraid to go to sleep now, afraid that I may have a stroke in my sleep and not wake up although sometimes I think it may be easier than having to live like this.