I just want to know if these symptoms are common or known in lupus as I am getting scared of having OTHER autoimmune diseases.
1. my hands get hot and red ; usually when I am warm - its NOT raynauds their not even cold ... when they get hot and red they itch . .
2. I have 3 spots of telangiectasia (spider veins) on my hand - very very small . . but im also very pale. this gets me thinking about scleroderma (though I don't have raynauds) so obviously frightens me
3. my joint pain feels like there are icicles going thru my joints - its usually a sharp but sometimes achy pain
4. when the weather changes (aka rains) I feel Horrid - I get very flu like and sometimes even get chills...
5. Anyone else have very bad GERD?
someone please advise me if these things can happen with Lupsu I am still new to this and I still worry
Some of them are normal issues that anyone can have. I have raynauds and still get the hot red hands. It mostly happens in the summer though. I also have little spider veins, mine are on my face (yuck) but the doc said that they are common among fair skinned people. Something to do with our skin being thinner if I remember correctly. Prednisone also makes skin less elastic so that doesn’t help. My cousin has scleroderma and has had multiple surgeries to stretch the skin on his arm as he was growing so I completely understand your fear. You also very accurately described my joint pain. I always said it feels like an ice pick jamming into my joint. I also get very achy and flu-like before a storm. The barometric pressure just wreaks havoc on me. I’ve had the disease since I was 8 so I’ve grown up with all of it. I’m 44 so it’s been a while…lol I never really know if the weird things that my body does are lupus related or not. I have multiple other conditions so it’s hard to pinpoint. My last doctor who was awesome just told me to stop trying to label it because there is so much overlap between conditions that it would be impossible. In other words deal with what is and don’t borrow trouble. Very sound advice that has kept me going. I don’t have gerd but know that non-lupies have it too. I’m sorry you have to deal with this it is not the easiest thing to live with. To give you hope I have had remissions that lasted for several years so it won’t always be this bad. Gentle hugs, Annemarie
Annemarie - its so nice to here such a sound voice reply to this - thank you so much. . . in the past 2 years I have lost my new born baby - got diagnosed with a rare condition called Postural Orthostatic Tachycardia Syndrome then 3 months later diagnosd with Lupus . that I am just a mess. thanks for your words its very helpful
Annemarie said:
Some of them are normal issues that anyone can have. I have raynauds and still get the hot red hands. It mostly happens in the summer though. I also have little spider veins, mine are on my face (yuck) but the doc said that they are common among fair skinned people. Something to do with our skin being thinner if I remember correctly. Prednisone also makes skin less elastic so that doesn't help. My cousin has scleroderma and has had multiple surgeries to stretch the skin on his arm as he was growing so I completely understand your fear. You also very accurately described my joint pain. I always said it feels like an ice pick jamming into my joint. I also get very achy and flu-like before a storm. The barometric pressure just wreaks havoc on me. I've had the disease since I was 8 so I've grown up with all of it. I'm 44 so it's been a while...lol I never really know if the weird things that my body does are lupus related or not. I have multiple other conditions so it's hard to pinpoint. My last doctor who was awesome just told me to stop trying to label it because there is so much overlap between conditions that it would be impossible. In other words deal with what is and don't borrow trouble. Very sound advice that has kept me going. I don't have gerd but know that non-lupies have it too. I'm sorry you have to deal with this it is not the easiest thing to live with. To give you hope I have had remissions that lasted for several years so it won't always be this bad. Gentle hugs, Annemarie
I have awful gerd and my joints ache and feel awful. When it rains its even worse
Aside from the spider veins I have all of your described symptoms (and more of course). I am in the same boat as Annemarie with multiple conditions and I try not to worry or label things too much. My doctors just try to treat what is going on at the moment. Mind and body are very connected and the more I worry the sicker I feel. I am sorry you have gone through so much in a short time. Things will get better,
Meg
I too have similar symptoms as part of my lupus. It is different for all of us, but there are a lot of similar symptoms we all share. Try not to worry as that will make it worse! The weather does affect me as does the sun, it is like poison to me. I try to cover up with SPF shirts, hats, sunglasses and always lots of sunscreen. All of that doesn't always work so I just stay out of the sun as much as possible. Are you taking any lupus medications or pain meds? They will help.
Try to relax and treat one symptom at a time! I have GERD from time to time too!
Best is to just ask your doctor/rheum next time you are in there.
We tend to get GERD from taking anti inflammatory drugs such as motrin etc. So that is normal. Just try to eat always a tiny bit before taking any kinds of those pills and should help. Also try to not take GERD medicine daily as more one uses them worse your GERD can get and eventually you can end up with very bad stomach acid if you do not take it even for a day. So they been recommending for at least 5 years now to try and not take it daily only as needed.
NPR had excellent story about a woman who had GERD and took hers' daily...woke up with most severe pain due to her stomach was producing way over normal amounts of acid due to drug reducing it so without drug it was out of control.
Rest...can be normal stuff things as in many people healthy or with SLE get them but sounds like you might have RA or some arthritis going on which is normal for us as well...plus most of us do hurt with weather changes.
If you move where humidity is different eventually your body adjust and still hurt. Again speak to doctor about what helps..heating pads and TENS plus epsom salt baths help with that kind of pain for myself and may others.
good luck...try to not worry....i have many other auto immune diseases and yet still have lived pretty okay life. Worked most of it even if i had to go down to part time some of the time..but often worked full time if they were in bind...been hiking and back packing...only thing i cannot do since getting RA in twenties was play tennis...hurts my feet plus i cannot stop fast enough to be any good. Other wise most other things i can do so i hope this gives you encouragement and hope that life with lupus can be pretty normal and just fine. A lot is just trying despite the fear and i agree, it helps to have someone with you though i did get sick with just my dogs...eventually even fainted. I came too with the 3 of them laying down surrounding me...and never felt so safe in all my life. So i knew i be okay out hiking with them alone after that date.
If you continue to be scared, try speaking with counselor about it who might give you some small things to do that will help your self esteem to try and realize it or most can be done. good luck and try to enjoy life as much as possible...makes lupus better plus your head and just everything!!
thank you SO much
siskiyousis said:
Best is to just ask your doctor/rheum next time you are in there.
We tend to get GERD from taking anti inflammatory drugs such as motrin etc. So that is normal. Just try to eat always a tiny bit before taking any kinds of those pills and should help. Also try to not take GERD medicine daily as more one uses them worse your GERD can get and eventually you can end up with very bad stomach acid if you do not take it even for a day. So they been recommending for at least 5 years now to try and not take it daily only as needed.
NPR had excellent story about a woman who had GERD and took hers' daily...woke up with most severe pain due to her stomach was producing way over normal amounts of acid due to drug reducing it so without drug it was out of control.
Rest...can be normal stuff things as in many people healthy or with SLE get them but sounds like you might have RA or some arthritis going on which is normal for us as well...plus most of us do hurt with weather changes.
If you move where humidity is different eventually your body adjust and still hurt. Again speak to doctor about what helps..heating pads and TENS plus epsom salt baths help with that kind of pain for myself and may others.
good luck...try to not worry....i have many other auto immune diseases and yet still have lived pretty okay life. Worked most of it even if i had to go down to part time some of the time..but often worked full time if they were in bind...been hiking and back packing...only thing i cannot do since getting RA in twenties was play tennis...hurts my feet plus i cannot stop fast enough to be any good. Other wise most other things i can do so i hope this gives you encouragement and hope that life with lupus can be pretty normal and just fine. A lot is just trying despite the fear and i agree, it helps to have someone with you though i did get sick with just my dogs...eventually even fainted. I came too with the 3 of them laying down surrounding me...and never felt so safe in all my life. So i knew i be okay out hiking with them alone after that date.
If you continue to be scared, try speaking with counselor about it who might give you some small things to do that will help your self esteem to try and realize it or most can be done. good luck and try to enjoy life as much as possible...makes lupus better plus your head and just everything!!