I'm Leslie, I'm kind of freaking out a bit here. A bit of background-I'm 52, use FitBit and exercise a ridiculous amount in the course of the week between work and dogs. My dogs are the light of my life. Callie is an AmStaff, Sophie an AmBull. Don't think fighting dogs or scary dogs. Since adopting them I've become a bully breed advocate. Big, strong, imposing looking, goofy, happy lapdogs.
I've been married almost thirty years. My husband has Parkinson's. Early stages and he can still get around. A special needs daughter, not a big deal because you learn to deal. But the doctor sent me for a followup blood test today. He's saying on one hand he's testing for lupus but then he's saying he doesn't think it's lupus. He seems damned concerned over what he doesn't think it is.
But he won't have the test result until maybe next Friday. I have no idea what lupus is. I know I've had chronic ankle pain for maybe a decade. Weird places too like my wrist, back, thumb joint...always the same places. Attributed it to arthritis, just getting older, the dog pulling me down, straining something at work-I do heavy lifting sometimes...but not like some kind of illness.
I'm scared, my husband is going to get more feeble, he's not doing so hot now. I have to hold up the circus ya know? Grown son still living at home but it's still a lot. Guess it's about finding out if it is in fact lupus. I was reading that it's hard to diagnose sometimes. I'd appreciate any thoughts
Hi there…i am new here as well and still waiting for a diagnoses. Almost a year ongoing for me but thats far less than some. I dont have much advice but can tell you that this support site is awesome. I have never felt so much love,care and concern anywhere. Warm wishes and prayers your way.
Laura
loveabull, I know it's hard, but I would say to hold those thoughts until you get a diagnosis. Any symptoms other than pain? A lot of conditions cause joint pain.
Welcome. Autoimmune diseases are hard to diagnose sometimes. Sounds like arthritis, maybe osteoarthritis, is what you are describing in joints. thats autoimmune. You said you are exercising an enormous amount. That’s hard to do with lupus. We have enormous fatigue and often become disabled from that. Usually there is a skin rash over mouth nose area that can look like a sudden sunburn. There r blood tests but sometimes won’t show for years. There are however tons of other autoimmune diseases that are similar. From what you are describing though, unless there are more symptoms, I’m not sure how the dr comes to that conclusion. i wouldn’t get worked up til you find out the real diangnosis. Lupus is similar to tons of other diseases like arthritis. Some not so bad. You have enough to worry about without adding more until you might have to.
I agree…don’t get yourself worked up till you have a diagnosis. Although I can tell you I have had the ankle and foot pain for over 5 years…blaming it on my activities. Felt it in my neck, back, wrists, etc. It has felt better recently though. I was diagnosed almost a year ago. Have had a lousy few years with being ill but even with the Lupus, just started back 2 months ago with sports…rowing, tennis and golf. I’m almost 60 and think I’ve been sick for years just never diagnosed.
I agree…don’t get yourself worked up till you have a diagnosis. Although I can tell you I have had the ankle and foot pain for over 5 years…blaming it on my activities. It was in my neck, back, wrists, etc. It has felt better recently though. I was diagnosed almost a year ago. Have had a lousy few years with being ill but even with the Lupus, just started back 2 months ago with sports…rowing, tennis and golf. I’m almost 60 and think I’ve been sick for years just never diagnosed.
Don't panic, one step at a time. Reading up on possibilities is good on the prevention side, but deep breath...baby steps will help you to get a handle on all things...your pain is real and remember even caregivers have to stop now and again to rest and smell the roses....I can say this because I am a late bloomer to this..please keep us posted. It is a great supportive site..blessings to you!
Hi and welcome to the group. I was diagnosed with fibromyalgia about 20 years ago and just last year with lupus, sjogrens and raynaulds but think I’ve had those a lot longer, I’m 64. We seem to have some things in common. My mother had Parkinson 's for about 15 years until she died 3 years ago. I adore dogs but mine are small, chihuahuas. I have one long haired and one short haired tiny one we are getting in a couple weeks named Sophi. I’ve had joint pain with swelling for years especially in my thumbs and pinkies. I’ve had too many surgeries due to lack of cartilage (both knees, big toe joint fused, 3 cervical disc’s, shoulder and jaw.) Two surgeries because of adhesions. I go next week for a CT on my kidneys because of pain and an ultrasound that showed a nodule or growth. If you talk to 20 people with lupus you will get 20 different sets of symptoms and they seem to change from month to month with each one. I also have MGUS which is an increase of M protein that shows up in the blood that can possibly mean other issues so have to keep a close eye on it with oncologist. Some days are good some are bad and like arthritis you just take a day at a time and learn to take it easy more. Twenty years ago I was slim, athletic and a black belt in Taikwondo then it just started going downhill from there. Now I’m 64 and about 60 lbs overweight and unable to walk a block without pain or being totally wiped out. Just standing in one place for more than 5 minutes and I’m dripping sweat and in pain in my back. A dear friend of mine was just diagnosed a few months ago with lupus and she isn’t as symptomatic as me so I never know if the problem of the day is lupus or a fibromyalgia issue. Like I said everyone is different. I wish you God’s blessings and hope all goes well with you.
Hi Loveabull.... I know right now your mind is racing with all the possibilities of what if's but if there is one thing Lupus has taught me is plan for the worst but hope for the best. Honestly I hope it is something a little less complicated than Lupus you sound like your plate is already full. And my saying don't freak out until the doctor gives you something to freak out about is easy for me to say and so so hard to do. Just know we are all rooting for you here. please keep us posted . Will say a prayer....God Bless Julie
I’ve had joint pain with swelling for years especially in my thumbs and pinkies. I’ve had too many surgeries due to lack of cartilage (both knees, big toe joint fused, 3 cervical disc’s, shoulder and jaw.) Two surgeries because of adhesions. I go next week for a CT on my kidneys because of pain and an ultrasound that showed a nodule or growth. If you talk to 20 people with lupus you will get 20 different sets of symptoms and they seem to change from month to month with each one. I also have MGUS which is an increase of M protein that shows up in the blood that can possibly mean other issues so have to keep a close eye on it with oncologist. Some days are good some are bad and like arthritis you just take a day at a time and learn to take it easy more. Twenty years ago I was slim, athletic and a black belt in Taikwondo then it just started going downhill from there. Now I’m 64 and about 60 lbs overweight and unable to walk a block without pain or being totally wiped out. Just standing in one place for more than 5 minutes and I’m dripping sweat and in pain in my back. A dear friend of mine was just diagnosed a few months ago with lupus and she isn’t as symptomatic as me so I never know if the problem of the day is lupus or a fibromyalgia issue. Like I said everyone is different. I wish you God’s blessings and hope all goes well with you.