Hi, I am a newbie here but am on another general forum where I live, so the layout is pretty much like ours.
My name is Trish, I am female, married with one daughter and one G-daughter.
I have SLE and MCTD and the pain that is in my bottocks, thighs and calves are unbearable when I sit or lay on a bed/couch.
I was hospitalized last week for fear of what might be a heart attack. Heart problems is something I haven't had so I wasn't that concerned it would be my heart.
My mid chest and mid stomach was hurting like a squeezing sensation, sweaty, chills and very clammy. I had a very bad taste in my mouth that I couldn't describe but had a faint hint of alcohol.
I had 1 1/2 glasses of wine the evening before with dinner and this attack happened 12 hours later.
When I got to the ER, they did standard blood work and normal triage procedures. They gave me an injection of Demerol and something for nausea.
When my blood work was back (seemed like just a few minutes) the ER doctor said he would have to admit me because my Liver enzymes were over 500 and should be around 10-20.
I told them I have SLE/MCTD and they were pretty clueless and I educated them a little about the diseases. They were convinced I was a binge drinker and that I use street drugs or narcotics on a regular basis.
My primary doctor is in another town, about 75 miles away so we didn't want to chance that drive with HA symptoms.
It took a full day to convince them I wasn't either a binge drinker or drug user of any kind (other than what my doctor gives me).
Has anyone here that maybe has SLE/MCTD had any of these symptoms that I might be able to read about? I have to go back to that hospital tomorrow and pick up my medical records of everything they did to take to my Primary on Monday. I think they probably ran over 300k dollars in tests and some I definatley don't want to do again.
Any suggestions are very much appreciated.
Re: Unbearable pain in my bottocks, thighs and calves
Yes the lower extremity pain is a staple of my symptoms. I am at this moment sitting in a recliner on top of a feather pillow and two heating pads. This is my normal routine as my hips and thighs and calves ache continuously. I had a reprieve a couple of weeks back as I had an upper respiratory thingy going on and the meds I am on was making me reject the meds used for the respiratory thingy so I had to leave off all my meds to get over that problem. I was elated that my Lupus & Fibro symptoms were so much better but as I went back on those meds, I am in a major flare, even having constant fainting feeling. I am at a loss as to whether to stop the meds and add them back one by one to see if I can identify the offender even though I was told I could add them all back at once. My suggestion is the use of heat, some topical analgesic (I use Biofreeze), hot relaxing showers or baths, and prayer. I also recommend foot pumping exercises so as to keep the blood flowing. I fully understand what you are dealing with.