Jersey Girl

I have not had advil (or generic )in many years. At first I couldn't understand why I was reacting with increased symptomology, but I was, so I totally avoid it. I have had to mention this to anaesthesiologists because apparently something similar is mixed into the cocktail that they routinely give. Martha

Me too, unfortunately. Martha

I am so sorry your daughter has these horrible symptoms. Reading your post reminded me of when I was initially ill and did not have a diagnosis. I vividly remember not being able to get up off a stretcher after having an MRI because my legs wouldn't support me--it was so frightening. I have had POTS for over 6 years and still have weakness in my legs on a regular basis--exercises have helped somewhat. Martha

Yes, I have this quite often, mainly on my left side. And the squeezing was so, so much worse when I first developed POTS years ago, that I had multiple cardiac tests, including a stress test lying down! I usually get this symptom along with other POTSy symptoms and end up taking Xanax as it is distressing. Martha

You should request that your son have a home tutor if he has been absent a certain number of days in a row, ie 3 days. It is hard to make up that level work by yourself. Being labeled "chronically ill" in my state has certain advantages, although no one likes to have a label. Martha

Dear Brenda, I am so sorry to hear about your 11 year old daughter. It must be so difficult for your family, as I know it was for mine when I was initially ill and then didn't "get better" even after I was finally diagnosed 2 years later. Westchester Medical Center in Valhall, NY is supposed to have a good pediatric program--I'm too old, darn it. I initially had to spend alot of time just resting and sleeping for almost a year. Talk about role reversal, I "practiced" walking again holding on to my daughter's arm. It is easy to be deconditioned with this illness and important to keep your leg muscles strong. For whatever eason, exercising in the water can have a therapeutic effect. I also joined Curves for 1 year after about 3 years and found that they had good equipment for the lower body, but looking back I wish I had a recumbent bike at home. Differnet plain warm soups with extra salt was a bonus at first. There is a tremendous overlap for some of us with Chronic Fatigue Syndrome that has only recently been treated as a serious condition in the pediatric population. Neurontin was a big help for me as well--the only medication which I didn't react to. I hope she is eligible for home tutoring and support from your school system. Martha

Oh Melissa, I can hardly believe it. I wish you a speedy recovery. Love, Martha

Many local anaesthetics like novocaine may also contain epinephrine which I personally cannot tolerate. I also have chemical sensitivities to many medications as well-- more severely reactive than allergic-- reactions to Relafen and Alesse landed me in the hospital overnite twice without a good explanation. Martha

Yes, it is hard to get up because I also have that where you have to wait for your muscles to wake up. If I drink something 20 minutes before I get up, it does help a little. Martha

I usually lie down after eating for about 40 minutes, especially after breakfast. I immediately bloat, no matter what I eat or drink. I just accept this as part of my day. Best, Martha

No, I am 5'9" tall and slender. My mom also bruises extremely easily without explanation after a full workup and her skin is paper thin. Martha

I was instructed to drink enough fluids to make sure that my urine was almost clear and that if it wasn't, I wasn't drinking enough! I have to drink flulids during the night. Martha

Hi Nina, I am also fair skinned and formed large keloids at the incisions following surgery on both my shoulders due to CALCIFICATIONS throughout both my rotator cuffs that I have yet to get an explanation for how they formed. (the keloids are somewahat painful also) The bone in my fractured wrist (when I fell when I was dizzy) healed up ok but the many muscles involved in making one's wrist move were extremely stiff and I needed so much extra therapy that I was in a constant fight with the insurance company. I also had to have CALCIFICATIONS of cysts in my breast tissue aspirated to make sure they weren't cancerous. I have to do my water aerobics class on a regular basis or I stiffen up quickly. Does your insurance company cover the cost of the genetic testing? Is there a genetics clinic at U Of Penn? I have 2 daughters of childbearing age. Best, Martha

Angela, I never heard of this before. I hope you get some relief. Take care of yourself. Martha

I hope it goes better than you expect, because then you will get a moral boost! You deserve to be treated with respect. Martha