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Author Topic: just help is all i can say, very frustrated  (Read 192 times)

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Offline livelaughlove

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just help is all i can say, very frustrated
« on: September 03, 2014, 05:38:33 AM »
Hi everyone, ive had bodywide fasiculations for 18 months now, no cause found. My doctor suggested that maybe it could be a side effect from the zoloft which i have been for like 14 years now at 50 mg once a day... i just think it would be weird that i never had any side effects on zoloft until 18 months ago and then bam i get all this weird stuff. It started with i would wake up and my eyelid wouldn't open. Then I had PVCs in my heart for 6 weeks, which i never had before, and never have had since. Then my lower eyelid twitched the week after my heart stopped, and the eyelid twitched for about 8 weeks. Then that stopped twitching and it moved to twitches on just the right side of my body only and right side of my face for about 8 weeks, then it just moved to everywhere in my body. I shouldn't say twitches, because it's not a twitch, it is a fasiculation. So i don't actually jerk a body part or anything, just the muscles contract. I don't get any cramping with it or charlie horses. About a year into this i went to a neurologist where i had MRI of my brain and EMG which was normal so he said BFS, likely post-infectious, because it started a few days after having norovirus (i did a stool test and it was positive norovirus and equivocal salmonella). So since that time period i have gotten better and some days i only have just a few fasics and feel really good, but other days i feel really bad and confused and that makes me anxious because i don't like to feel that way. I hide it, so no one knows this is what i deal with all day every day. I don't talk about it. Anyways, so i go to the doctor back in march and i say i am so sick of this, and she says maybe the zoloft is causing the fasics, because that is listed as a side effect, but i just think it's weird that ive been on it all these years and then all of a sudden it just craps out. So i weaned down to 25 mg which i have been on for 3 months now.
My other problem is bilateral hip pain and chronic chest pain since all this started. My chest pain has gotten really bad within the past month, and i do feel anxious when i am in stores with bright lighting, bright lighting really seems to trigger something in me and i start getting fasics if i am in that type of bright lighting and i feel dizzy like im gonna fall over. So i don't think i want to go off the zoloft. Anyways, lately my chest has really been hurting and i get deep breathing with it, advil makes it feel better and so does ice. It is worse when i lay flat, and then sometimes when i lay flat the pain shoots straight through to my back and around my right shoulder. I also get a lot of pain in my lower rib cage as well, like a shredded tearing muscle feeling. I wonder if i actually have some rheumatic problem going on, or if it is just a side effect from the zoloft, or if it really is just all related to costochondritis which my PCP said. I just feel they are missing something.
My labs have always been normal but i did have a small bowel biopsy and in the differential was celiac, systemic autoimmune disorder, RA, Hashimoto thyroiditis, collagen vascular disorder. So then i had bloodwork done and i do not have celiac. My TSH was normal. My ana was negative, So i just got told i don't know why you have that biopsy.
Yesterday i go to the dermatologist because i have developed over the past few months melasma on my face. Except i am not pregnant and i am not on the pill. So i guess it's just from too much sun, but hormone imbalances cause it, so do thyroid issues. He also took a biopsy of a mole on my arm which i didn't even realize looked irregular. Woops. So i am glad i went.
As far as my family hx goes we have a lot of lymphomas and autoimmune disease.
My dad and his sister = multiple sclerosis
My mom, her sister, and their aunt = both Hodgkin's lymphoma in my mom and non-hodgkins lymphoma in both aunts
My sister = hashimoto thyroiditis and Undifferentiated Connective Tissue disorder (which is like lupus but not lupus)
My brother = alopecia areata and he has bowel issues and skin swelling issues but won't go to the doctor
In distended family, such as cousins, etc we have ulcerative colitis, crohn's polymyalgia rheumatica. I don't have a very big family but as you can see we have a lot of issues going on.
SO anyway, from keeping everything in it is creating a not good feeling in me. I hide it and appear strong. But i struggle every day and i am always thinking from moment to moment will i feel good or will i feel really bad, and that creates a sense of panic/anxiety in me, like i don't want to be somewhere where i feel trapped like if i am food shopping because i want to feel free to get out of there if i start to not feel good.
Lately i keep on doing stupid things, mixing my words up, last night my chest pain was really bad. I kept getting this weird numbness sensation on my skull. That i kind of wonder if it is all from the zoloft decrease. I also for the past few weeks have been having difficulty swallowing, which is really annoying, like my muscles won't swallow right for a minute.
Anyways, last night i decided to take zoloft before bed instead of in the morning, maybe a switch will help me. So i am still on the 25 mg. I really want to go to a doctor and say my chest is really driving me crazy with the difficulty breathing, but i dont go because i feel like right away they will be like anxiety! But i disagree. I don't feel like they are really listening to me. Yes, i am getting increased anxiety because i feel i have a problem and they won't listen. I am very frustrated.
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