Aa
Muscle Spasms
Does anyone diagonased with lupus suffer from crazy muscle spasms and twitching.
So, it's been about half a year since I posted here... I still have no DX...Except, the doc thinks maybe it's Fibro but they'll only say that for sure when she's ready to give up looking.. ugh.. I was referred to a neurologist who said he had nothing to add to my case but this past week, I think I had a Lupus Butterfly rash. It was mild and only lasted one day (although I put some Aveeno cream on it). It looked sort of like pimples on my face and was ever so slightly purplish and the following day I was sick with a cold. It is the 4th time this winter I have had a cold/flu and every time comes with fever and chills. This never happened to me before. I can't just get a cold anymore. It's so much more this year - fever, chills, body aches (my hands and feet are the worst), headache, fatigue(real bad)....
Prior to this, I showed my doc a video I took of the Carpal Pedal Spasms I get(finally she listens. lol) and she was sure I had a parathyroid problem - those tests came back normal. 3x they have tested ANA with 1x positive and 2x negative. Maybe I was in remission?
One thing I know for sure is with every "flare" up, I feel worse and have more trouble recovering from it.
I go back and forth every day trying to figure out for myself what is wrong, but with this recent rash, I really wonder - could be Lupus this whole time?
Prior to this, I showed my doc a video I took of the Carpal Pedal Spasms I get(finally she listens. lol) and she was sure I had a parathyroid problem - those tests came back normal. 3x they have tested ANA with 1x positive and 2x negative. Maybe I was in remission?
One thing I know for sure is with every "flare" up, I feel worse and have more trouble recovering from it.
I go back and forth every day trying to figure out for myself what is wrong, but with this recent rash, I really wonder - could be Lupus this whole time?
This discussion board has helped me realize I am not alone! I have started to have lots of twitches. They are anywhere on my body, but only when resting in my Lazy Boy or in bed. When I am very tired, they keep me awake for some time.I mentioned it to my neursurgeon (back surgery soon for a bone spur) and his response was, "I have heard he same from several patients." But he didn't give any explanation. It's frustrating, and others can't possibly understand. They just think I'm complaining again. I've had a full year now of back pain....tried everything. Surgery Dec. 17. I'm not thinking it will help the twitching, though. I'm really looking forward to getting off pain medications. I hope that will help!
How are you doing with the twitches? I have started to have them. They are anywhere on my body, but only when resting in my Lazy Boy or in bed. When I am very tired, they keep me awake for some time.
I am so happy to hear others experience the horrible muscle spasms that wrap around your waist! I recently been in & out of the ED because of it. I had a dr who literally tried to tell me it's pneumonia!!! I finally was given Valium to relax the muscles. I increased my prednisone too-- this has been very helpful. Please keep sharing your post-- w/o hearing from people living with Lupus I think I would be seriously depressed. It lets me know I'm not out of my mind.... Thank you all
Hi Guys :)
I'm 24 years old, and very much thinking I could possibly be (developing) Lupus. I have an appointment with an MD tomorrow, but I'm worried they will dismiss my symptoms and tell me I'm just stressed. It all started about 4 years ago.
I started getting numerous UTI'S in summer 2009. The UTI's were like clock work, every two weeks. I would even pee blood with them they were so bad. It was summer, I had a pool in my back yard, I was dating a new guy- the doctors came up with everything. I can't tell you how many times I heard "You're a female, this happens to us."
My sophomore year of college, I turned into a kidney stone- making machine! I even had one lodged in my ureter for a WEEK and they needed to do surgery. I had never been so sick in my life.This happened twice (2 surgeries). SEVEN kidney stones later, I went to an endocrinologist because one blood test showed a parathyroid hormore to be elevated. The parathyroid hormone was never elevated again in future blood tests, so I was released from the endrocrinologist's care. I am happy to say, I haven't been plagued by kidney stones for some time now. (*knocks on closest wood furniture*) I still get random "ticks" in my kidneys, maybe like there is stones bouncing around...
So, lately... I've been having some sort of "episodes" before my period. They usually come on approx. 2-3 days before my period. I am on a birth control pill. The gyno said that I possibly had too much estrogen in the pills, and we've tried a butt-ton of different ones. Nothing seems to deplete whatever these "attacks" are I'm having every month. Let me explain.
Every month, I wake up with a KILLER MIGRAINE. Like, I've been partying for days and days... such a sickening headache. I have thrown up multiple times from them being so bad in the past- can't keep my eyes open. Then, within a few hours, my body follows suit. My neck goes, my shoulders become so sore, my legs feel like I've been doing heavy squatting, very weak muscles. Simply moving from the bed to my couch in my tiny little apartment is exhausting. Needing to get up to go to the bathroom is so strenuous. When this starts, I know darn well there is no school for me,no work for me- no nothing for at least 2 days. It makes me feel so worthless because I'm in my last year of school and I want to get this figured out before I graduate and get a job.
Last month (September) I had a rash accompany the "attack". It was on my left shoulder. Red, raised, scaley patches. It stretched down to my shoulder blade. Didn't itch, just hung out for a couple of days and then vanished. I thought it was dry skin, so I put cocoa butter on it a couple of times a day and just chaulked it up to dry skin. The two biggest patches donned a boarder, the other smaller ones did not. I'm so mad at myself for not getting a picture to show the doctor. I usually stay sick for close to three days, until my period starts or I start a new pill pack. These "attacks" are so painful, I BEGGED my mom or boyfriend to take me to the hospital and they just told me to rest it off and I would be ok. "Resting" during one of these things is impossible. The heating pad is my only relief.
If it were just related to my periods, perhaps I wouldn't be so concerned, however, last semester during finals, I had the same sort of situation happen. This, however, was mid- cycle... completely ill. Pounding headache, body aches, next to "immobile", vomitting. But, I had ONE finger swell up... just one. My left pointer finger. (I'm right -handed) Thought I may have hit it on something (I just didn't remember), the joint was really swollen, looked like one giant sausage finger. I couldn't bend it down all the way. It stayed like this for a LONG time- quite a few weeks and gradually returned to back to normal. Not long after that, (this was May) I developed a weird little dry patch on the same finger. Somedays it looks red and irratated, other days (like today) it's just dry and cracking. It's still on the tip of my left pointer finger and now it's October. And of course, what lead me to this page... I have the muscle twitches too. Not painful by any means right now, just annoying when trying to fall asleep or sitting with my feet up.
Basically... I just need to know I'm not crazy guys. I'm SO scared this MD tomorrow will just brush me off (Tomorrow is our first meeting). Tell me what you think... and I will keep you posted.
For the record, I've had seven kidney stones by the age of 22, I KNOW pain, and whatever I'm going through right now is no joke- I'm not a wussy.
Whether it's lupus or not... I just want to get it figured out. I can't miss school when I'm so close to the end.
Night!! Katie
I'm 24 years old, and very much thinking I could possibly be (developing) Lupus. I have an appointment with an MD tomorrow, but I'm worried they will dismiss my symptoms and tell me I'm just stressed. It all started about 4 years ago.
I started getting numerous UTI'S in summer 2009. The UTI's were like clock work, every two weeks. I would even pee blood with them they were so bad. It was summer, I had a pool in my back yard, I was dating a new guy- the doctors came up with everything. I can't tell you how many times I heard "You're a female, this happens to us."
My sophomore year of college, I turned into a kidney stone- making machine! I even had one lodged in my ureter for a WEEK and they needed to do surgery. I had never been so sick in my life.This happened twice (2 surgeries). SEVEN kidney stones later, I went to an endocrinologist because one blood test showed a parathyroid hormore to be elevated. The parathyroid hormone was never elevated again in future blood tests, so I was released from the endrocrinologist's care. I am happy to say, I haven't been plagued by kidney stones for some time now. (*knocks on closest wood furniture*) I still get random "ticks" in my kidneys, maybe like there is stones bouncing around...
So, lately... I've been having some sort of "episodes" before my period. They usually come on approx. 2-3 days before my period. I am on a birth control pill. The gyno said that I possibly had too much estrogen in the pills, and we've tried a butt-ton of different ones. Nothing seems to deplete whatever these "attacks" are I'm having every month. Let me explain.
Every month, I wake up with a KILLER MIGRAINE. Like, I've been partying for days and days... such a sickening headache. I have thrown up multiple times from them being so bad in the past- can't keep my eyes open. Then, within a few hours, my body follows suit. My neck goes, my shoulders become so sore, my legs feel like I've been doing heavy squatting, very weak muscles. Simply moving from the bed to my couch in my tiny little apartment is exhausting. Needing to get up to go to the bathroom is so strenuous. When this starts, I know darn well there is no school for me,no work for me- no nothing for at least 2 days. It makes me feel so worthless because I'm in my last year of school and I want to get this figured out before I graduate and get a job.
Last month (September) I had a rash accompany the "attack". It was on my left shoulder. Red, raised, scaley patches. It stretched down to my shoulder blade. Didn't itch, just hung out for a couple of days and then vanished. I thought it was dry skin, so I put cocoa butter on it a couple of times a day and just chaulked it up to dry skin. The two biggest patches donned a boarder, the other smaller ones did not. I'm so mad at myself for not getting a picture to show the doctor. I usually stay sick for close to three days, until my period starts or I start a new pill pack. These "attacks" are so painful, I BEGGED my mom or boyfriend to take me to the hospital and they just told me to rest it off and I would be ok. "Resting" during one of these things is impossible. The heating pad is my only relief.
If it were just related to my periods, perhaps I wouldn't be so concerned, however, last semester during finals, I had the same sort of situation happen. This, however, was mid- cycle... completely ill. Pounding headache, body aches, next to "immobile", vomitting. But, I had ONE finger swell up... just one. My left pointer finger. (I'm right -handed) Thought I may have hit it on something (I just didn't remember), the joint was really swollen, looked like one giant sausage finger. I couldn't bend it down all the way. It stayed like this for a LONG time- quite a few weeks and gradually returned to back to normal. Not long after that, (this was May) I developed a weird little dry patch on the same finger. Somedays it looks red and irratated, other days (like today) it's just dry and cracking. It's still on the tip of my left pointer finger and now it's October. And of course, what lead me to this page... I have the muscle twitches too. Not painful by any means right now, just annoying when trying to fall asleep or sitting with my feet up.
Basically... I just need to know I'm not crazy guys. I'm SO scared this MD tomorrow will just brush me off (Tomorrow is our first meeting). Tell me what you think... and I will keep you posted.
For the record, I've had seven kidney stones by the age of 22, I KNOW pain, and whatever I'm going through right now is no joke- I'm not a wussy.
Whether it's lupus or not... I just want to get it figured out. I can't miss school when I'm so close to the end.
Night!! Katie
Have you been diagnosed with Scleroderma. It can definitely cause swallowing issues to occur.
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