Living with an Undiagnosed Condition

I had an unexplained heart attack at age 42 (no family history, no risk factors, very healthy eating habits.) I had a stent implanted in my left artery, was given heavy doses of Coreg, Lipitor, etc. and became very weak and experienced constant pain. The symptoms worsened.

A few months later I saw a cardiac specialist who changed my medications, eventually discontinuing all statin drugs. My cardiologist diagnosed me as having coronary artery spasms. He also said it is possible my left artery looked more closed during the first heart cath (it was 80 % closed) due to the fact that I could have been having a heart spasm at the time. I take medication for coronary spasm prevention and nitroglycerine to relieve frequent chest pain

I had a rheumotology work up — (I also had a bright red rash similar to a butterfly rash now considered as dermatitis by my dermatologist) which began us all on an auto immune disease search– consequently I saw many rheumotologists… some said it was the statin drugs lingering in my system, a few said fibromyalgia because my blood work started out normal, although I never had the trigger points.

I never believed my condition was purely fibromyalgia, not only because I lack the trigger point symptoms, but because during my reading I never came across a fibro patient who described their symptoms as being like mine. My pain comes on with the duration of any task or movement- sitting, standing, even lying in bed for too long brings on pain and tremendous stiffness which can take over a day to work itself out. I have unusual (hyper kinetic?) reflexes from some stimuli, tremors involuntary muscle movement, and above all, very limited energy which requires a daily nap. I have extreme sensitivity to touch– (I have a jacket I’ve worn for several years and recently put it on and got into my car. I felt as if I had something behind my back, as if I had sat down and didn’t see something which I could feel between my back and the car seat. When I reached behind my coat I realized it was two flat buttons which had always been on that coat. )

These are just a summary of my symptoms .

About a year ago I developed a number of neurological like symptoms and had a three part MRI to look for MS. There were no lesions. I have seen a very good neurologist who I’m going to see again later this month to discuss the potential diagnosis of RSD I’ve read how horrible RSD can be, and it isn’t a diagnosis I would choose to have, however, after doing an extensive amount of research I believe my symptoms fit the RSD description.

I never know what is going to happen when I wake up, and I’m hoping that most of my recent problems (enlarged billiary duct coming from my gall bladder causing pain and a three day hospital stay just a few weeks ago, Yesterday I had a cyst removed because a lump on my neck quadrupled in size in a matter of days.

I have a fluctuating WBC, which has mostly been dropping, as well as spontaneous bruising. Consequently I was given a PET scan, but this fortunately came out normal.

To those of you out there who have struggled with finding a diagnosis, specifically for RSD, does any of this sound familiar?

For those of you in the same situation as I am, all I can say is keep in touch with your support system! I have a very large system of friends, family and medical professionals who I trust and respect. One person isn’t enough to provide the support it takes to go through a long term illness. Spouses and loved ones can be too close to always think things through objectively.

I recently had one of my closest friends tell me to stop trying to protect my family by hiding the truth from them… I didn’t want to scare them with the cancer tests, but my friend made me see that the energy I spent trying to protect them should have been used towards concentrating on healing and taking care of myself.

Concerning RSD, any qualified opinions would be greatly appreciated. Thanks.