Hi everybody, I hope each day brings you a little less pain and a little more strength. Today i went to see my reuhmatoligist, and to my pleasure he reduced the amount of prednisolone to 7.5 mg a day. Yaie >u<. But along with that he said that i am showing typical signs of Autonomous Nervous Dysfunction. My pulse rate goes as high as 150p/s, my palms and sole swell and hurt as if i have worked for hours and there are blisters, bladder and bowl issues, sweating excessively from palm and sole etc.
I wonder if this is common with people having Lupus. If any of you suffer from the same, how is managed?
Remember in prayers :)
Hi Pollen, I am just starting out on my journey understanding what Lupus is. I do understand the high heart rate and my hands and feet hurting as if I worked all day instead of just 4. I don't get blisters, but I do have the bladder and bowl issues. I hope you find better days ahead and less pain. I will remember you in my prayers.
Yes I have the same symptoms of Autonomic Dysfunction, but I haven't found anything that helps.
I tend to always have a high pulse rate, so I just accepted it as normal.
I am on a beta blocker. I have had autonomic dysfunction for almost 20 yrs - I got tired of going to doctors to figure it out and just deal with it...I go when symptoms worsen and hope they can figure it out. I get a lot of hot flashes, movement dysfunction, bladder/bowel symptoms, reflex issues, blood pressure issues with big fluctuations, breathing issues...I decided to go to make an appt. neurologist and have to follow up with a cardiologist. Lately been having issues with swallowing food/drink and it seems like things are heightened. You basically have to go to a rheumatologist and then to the specialists who deal with the systems you have symptoms with. If you have to work FT and have a family (I have young kids), it's so hard to get to appts. My issue is trying to find a GOOD specialist. I'm even thinking of finding a hospital that has a Lupus Program. But starting a new job in April, I hate to have to take off work in the beginning.
thank you for the reply. Its been one year since i am diagnosed with Lupus and i am still trying to understand it. :) stay strong. warm hugs.
JewelofDenial said:
Hi Pollen, I am just starting out on my journey understanding what Lupus is. I do understand the high heart rate and my hands and feet hurting as if I worked all day instead of just 4. I don't get blisters, but I do have the bladder and bowl issues. I hope you find better days ahead and less pain. I will remember you in my prayers.
my doctor has suggested me Gabapentine 300mg and mecobalamine for these symptoms. lets see if it works.
Sheila W. said:
Yes I have the same symptoms of Autonomic Dysfunction, but I haven't found anything that helps.
I understand how hard it is to find a Good specialist. I am satisfied with my reuhmatologist, but not with the cardiologist. Just like you i am also prescribed beta blocker but it dosent seem to help me much. the only difference it made was now my pulse stays around 120p/s. so my reuhmy has suggested me Gabapentine 300mg and mecobalamine. I hope it works.
I understand how hard it must be for you to handle it all along with job and family. Good luck with the new job. Stay strong. Warm hugs.
Contagioussmiles said:
I am on a beta blocker. I have had autonomic dysfunction for almost 20 yrs - I got tired of going to doctors to figure it out and just deal with it...I go when symptoms worsen and hope they can figure it out. I get a lot of hot flashes, movement dysfunction, bladder/bowel symptoms, reflex issues, blood pressure issues with big fluctuations, breathing issues...I decided to go to make an appt. neurologist and have to follow up with a cardiologist. Lately been having issues with swallowing food/drink and it seems like things are heightened. You basically have to go to a rheumatologist and then to the specialists who deal with the systems you have symptoms with. If you have to work FT and have a family (I have young kids), it's so hard to get to appts. My issue is trying to find a GOOD specialist. I'm even thinking of finding a hospital that has a Lupus Program. But starting a new job in April, I hate to have to take off work in the beginning.
Thank you - same to you. I will have to ask the dr about the medicines you are on - please let me know if they work. I have to see a cardiologist, neurologist, and some other specialists to see why I can't seem to swallow and my throat hurts all the time/feels swollen, why my fingers, arms jolt/twitch involuntarily, and more. I have a lot of internal organ issues and am trying to stay off of prednisone b/c I was on it about 12 yrs ago and it made me blow up like a cartoon character....felt like a million dollars....but 60 mg of prednisone for 6 months seems like a lot of time for what I'm reading on here. I have to find out what is tied in with SLE and what is something else...not sure if it's all tied in together. They thought I had rheumatoid arthritis as a kid with the problems I had. I'm wondering if I've had SLE the whole time. Been anemic since before I was one year old, had osteochondritis in both knees at age 8, always had stomach issues, as an adult found out I have lung nodules that need to be followed (never smoked), an enlarged thymus that I will have to follow up on again now that I know I have SLE, the twitching/movement disorder, trouble breathing, heart palpitations, septal anterior aneurism and pfo in heart, have to get kidneys tested, had to stop meloxicam b/c liver enxymes were up (have have been up and down last 20 yrs), have had hot flashes/heavy sweating since early 20's after I was on Lupron for endometriosis, have polycystic ovarian disease (endometriosis and PCO go hand in hand with a lot of people who have lupus), surgery due to Dequarvain's Tenosynivitis (sp?), two complicated pregnancies, fluctuating blood pressure (when I wasn't overweight - bottom number), extreme exhaustion, hyper reflexes, a lot of pain/stiffness in joints..and even feel like my throat has a stiff feeling....weird....hypotonic bladder, and a lot of complications from when I was hit as a pedestrian in my mid 20's by an SUV....think it's what set off my autoimmune disease....I'm in my second worse flare since my mid 20's when my legs/whole body swelled up where it gave me stretch marks, my leg was just kicking up in the air on it's own until I was on the prednisone, and I had this uncontrollable feeling like I was falling to my left side. I have a lot of test to go. It takes so much energy to keep up with this disease. Warm hugs to you too...we all need a good hug. I know I'm forgetting stuff...oh yes, my memory is horrible now and my mood has changed...like my personality is changing ...and that is the toughest for me...hoping it's only part of this flare. I think I have to force myself to exercise no matter how horrible I feel...I gained a whole lot of weight right before the flare...sometimes lost weight...which seems like it's uncommon (?) b/c most people lose weight? I don't know. This disease sucks and is one big pain in the a$$....and well, everywhere.
Pollen Grains said:
my doctor has suggested me Gabapentine 300mg and mecobalamine for these symptoms. lets see if it works.
Sheila W. said:
Yes I have the same symptoms of Autonomic Dysfunction, but I haven't found anything that helps.