Hi All- Today is so cold where I live, but my body is reacting so weird today??? First of all the stiffness in my body such as arms/hands/wrists, legs/knees/feet/toes etc etc etc… are so extra bad? And from the cold the bluish/purple dusky shade of my hands/fingers, even forearms, feet/toes even lower legs & upper thighs…very odd? I know I have Raynauds from the APS I have had forever. But I never had anything like this. I rested today, but couldn’t get my fingers or toes warm enough, my skin on my fingers was tight too? Couldn’t extend or bend all the way? Now I have the woodburner roaring relaxing on my recliner and I feel some warmness, but now I feel burning, pins & needless & numbness type of pain in my feet toes and lower legs? But it is so painful. My toes are real puffy too & I am seeing that my feet are now getting like my hands have been…UGH… I have my legs up too? I just think something odd is happening & I am wondering if any of you have felt like this? I almost think I may be developing CREST, since the skin on my hands & fingers alsmost feel tight & I have like calcified lumps on my knuckles. Anyone w/ knowledge on CREST, I would appreciate an input from. Thanks. I just hurt and it really SUCKS BIG TIME!!! I HATE DAYS LIKE THIS!!! The pain becomes unbearable and I am tired…I doubt I am alone, just give me some advise, thanks :(… Suzie
My brother is Gluten free for his Ataxia. It seems so many are trying that. I do have to give it a shot, after I get some other issues squared away. Thanks for the info. I def. have to do something, can't go on like this too much longer.
Rachel Simpkins said:
Every night my hands go very numb. It is so aggravating. I havent been able to pin point why.
I just wanted to mention though, Gluten free diet is helping maybe half of my flares, they still happen
but now as bad. I know Im on chemo, its helping, but before I started that I went Gluten free for 6 months.
I got some relief, I am still Gluten free to this day. I also watch my sodium intake, I looked at all the food
labels and cannot believe how much salt they add to our foods! WOW! Amazing what them labels say.
Hi Again,
It may be the Raynauds Disease. I have that too, as well as the Lupus SLE, and I also have a rare form of Neuropathy, called Dad's Disease. (Distal Acquired Delaminating Sensory Neuropathy) It is rare...
I have heated rice packs that I put in the bottom of my bed at night. It is the only way I can get to sleep.
Today it is raining and cold. I feel it all over. My hands and feet turn almost purple. I just try to stay warm any way I can. I am typing this and looking at my purple hands and wonder what the heck am I doing.
You may have to go back to the doctor. Maybe you have Dad's Disease too? I always have to use gloves outside.
I am saying this as I had the exact same thing happen to me 2 years ago. I went to my Rheumatologist. He really didnt have many suggestions. I went home and just tried to get warm.
Thanks Kathleen, I have to try the rice packs, it has gotten so darn bad the past month. And it is cold out for spring, but not as bad as it was in Jan/Feb? So why so bad all of a sudden? I have APS Antiphospholipid>Anticardiolipin Antibodies, I really think that is causing many strange complications these days. Wierd, if ya ask me. I have raynauds pretty bad now, along with livideo reticularis on my legs real bad. My one foot is sooo bad, it is beat red, the pain is outrageous, can’t walk right, and when I put them up, it still is so painful and tingly??? I have to get to Dr. I am w/o health ins. for way too long now and it is costing me my enjoyment of life. I have an appt. on Apr. 12th for the Hospital Care Assistance Program, so I see some relief in the near future, Thank the good Lord! Feel Better my friend, the rice packs sounds toasty & nice right about now, lol. I gotta try that, BUT I gotta check if i even have rice in the cabinets right now?!, lol. I MAY be out. Of course, though, just my luck! {{HUGS}} Have a good night! Suzie :0)
Suzie D. said:
Thanks Kathleen, I have to try the rice packs, it has gotten so darn bad the past month. And it is cold out for spring, but not as bad as it was in Jan/Feb? So why so bad all of a sudden? I have APS Antiphospholipid>Anticardiolipin Antibodies, I really think that is causing many strange complications these days. Wierd, if ya ask me. I have raynauds pretty bad now, along with livideo reticularis on my legs real bad. My one foot is sooo bad, it is beat red, the pain is outrageous, can't walk right, and when I put them up, it still is so painful and tingly???? I have to get to Dr. I am w/o health ins. for way too long now and it is costing me my enjoyment of life. I have an appt. on Apr. 12th for the Hospital Care Assistance Program, so I see some relief in the near future, Thank the good Lord! Feel Better my friend, the rice packs sounds toasty & nice right about now, lol. I gotta try that, BUT I gotta check if i even have rice in the cabinets right now?!, lol. I MAY be out. Of course, though, just my luck! {{HUGS}} Have a good night! Suzie :0)
Good Morning. I just learned that Toni Braxton has Lupus. Saw it on Good Morning America interview this morning. It helps to have celebreties that have Lupus raise awareness for us. I saw a segment on the "The View" with Snoop Dog and his wife and Kid. His little daughter has Lupus. They are trying to raise money and awareness for Lupus patients.
I am very tired today. I need money so I work with a neighbor cleaning houses. We do 2 high end houses a day. She has not used me for a few weeks. I was so tired yesterday and I am still tired. My face is flushed. I think I am having a flare up. It is stressfull filling out college apps and managing a senior in high school as a single mother.. She is active in the theater.
I feel hot. I cant go to the doctor right now as I do have a health plan but it has a $5,000.00 deductable. I cant afford the doctor visits. I cannot get any help from the state as well. I feel I have to be positive for my daughter. I have demanded that all 3 of my kids get tested for Lupus. So far they have tested negative.
I hope you feel better soon. I feel alot better when the weather is Sunny.
Kathleen O'Neill said
Suzie D. said:
Thanks Kathleen, I have to try the rice packs, it has gotten so darn bad the past month. And it is cold out for spring, but not as bad as it was in Jan/Feb? So why so bad all of a sudden? I have APS Antiphospholipid>Anticardiolipin Antibodies, I really think that is causing many strange complications these days. Wierd, if ya ask me. I have raynauds pretty bad now, along with livideo reticularis on my legs real bad. My one foot is sooo bad, it is beat red, the pain is outrageous, can't walk right, and when I put them up, it still is so painful and tingly???? I have to get to Dr. I am w/o health ins. for way too long now and it is costing me my enjoyment of life. I have an appt. on Apr. 12th for the Hospital Care Assistance Program, so I see some relief in the near future, Thank the good Lord! Feel Better my friend, the rice packs sounds toasty & nice right about now, lol. I gotta try that, BUT I gotta check if i even have rice in the cabinets right now?!, lol. I MAY be out. Of course, though, just my luck! {{HUGS}} Have a good night! Suzie :0)
My hands and feet go numb all the time. I have a rare form of Neuropathy as well as Lupus.
How I get to sleep is to put hot rice packs in my bed and it warms my feet so I can sleep.
Sometimes I have to wear cotton gloves as my hands get cold too.
Rachel Simpkins said:
Every night my hands go very numb. It is so aggravating. I havent been able to pin point why.
I just wanted to mention though, Gluten free diet is helping maybe half of my flares, they still happen
but now as bad. I know Im on chemo, its helping, but before I started that I went Gluten free for 6 months.
I got some relief, I am still Gluten free to this day. I also watch my sodium intake, I looked at all the food
labels and cannot believe how much salt they add to our foods! WOW! Amazing what them labels say.
Hi All,
Thanks for all of the replies regarding this very annoying symptom. I see that alot of us are affected by it. It does help feeling as though we are not alone though, right? Anyway, the blood vessels I feel has so much to do with many of the problems discussed. The inflammation wreaks havoc on the vessels, thus causing all of these painful symptoms. I can't stand sometimes, the throbbing discomfort & pain in my legs and feet are ridiculous! After standing or even sitting w/o feet raised causes my feet to throb so bad, also tingle with pins/needles type of pain also turn bright reddish purple. Almost as if blood flow is blocked. I could cry, it gets so severe. As I awake in the morning the swelling has subsided from laying flat all night, but the pain is soooo bad along with a lot of major stiffness. I feel as if I am walking on two stiff sticks! So sad how we suffer. I hear Kathleen about the damn insurance. See you have it Kathleen, but are limited in receiving proper medical care due to ridiculous deductibles! SOOOOOOO SAD! In the country we are in, we should not have this, I am sorry, but something has gotta give with health care. I literally feel as if we are left to die, sadly but true. I am in need of care for years now. Scared to go to the ER or doctor due to financially being unable to take on such high bills! Then if not paid, my credit will be shot! I am stuck between a rock & a hard place so to say!
I saw Toni Braxton this morning on GMA also, see how her heart problem, is related to Lupus too. Once again, another subject as you all know I have brought up. My chest gets so bad alot of times. Almost like what angina does cause. So scary, but hey maybe now as more of the "famous" people suffer with Lupus maybe our concerns will be addressed. I hope they can make a difference for all of us! Let's just cross our fingers! Even Snoop Dog his poor little girl has it, she is so young but has gotten soooo sick! It is beginning to be an epidemic if u ask me. Everyone either has or knows of someone that has it. Or any of the debilitating Autoimmune dieases out there. We have to stick together and fight together! I am in, and I hope u all are too! {{HUGS}} to u my friends! Be Well, Suzie :0)