We're having a pretty extreme heat wave for this early in the summer. I am in such pain today it almost feels like my joints are on fire and my skin is tight, and just ACHY all over. Is this a 'normal thing' for Lupus? I've never experienced this kind of pain. Note I put normal in quotes since I know nothing with this disease is ever normal. :)
Hugs...Jenn
I understand fully what you are talking about...I had been used to the everyday aches and pains that I always experience but as of yesterday I started feeling pretty lousy. I have been achy and my skin feels like it is on fire, not only that it hurts to the touch. Anyone that touches me is getting a side eye from me because of the pain it is creating. I have been taking my Tramadol to no avail but I'm going to continue to rest and pray this too shall pass. Sorry don't know if it is normal or not but I know that I'm very familiar with how you feel. Praying you feel better soon.
Hi Jenn,
This is quite normal with Lupus...our hotness here at the late 50s i can just only cope with.
Your joints will swell, as mind do on my knees alot and my hands go unrecognizable to my own body and refering tightness to the skin it gets bad if your feeling like me where you to slit the skin to let it breath, i find that really bad especially more with the legs as it's alot harder to walk then...when your aching all over try and get rest as much as possible and when your able to do things pace yourself slowly and still take rests in between...alot of member's have found by doing this it helps a great deal overdoing things will make symptoms feel double of what they felt before.
Your right nothing is normal with this disease and from one day to the next you never no what's waiting for you but it's all about learning your symptoms and trying your hardest to master them.
((Hugs Terri)) xxx
Hi Jenn------
so sorry to hear of all the pain u r in. I sooooooooooooooo know the feeling. Can u get Literderm patches from your Doctor? They do help a lot if u place them right on your joints.
Sending u lots of healing light!!!!!!
Peg
I just came inside and am having the same thing. I can barely hold the baby and I feel sick.
Jessie, i can't tell you what to do but only advise you but if possible lay your child down while your feeling bad mate.
Love Terri xxx
Jessie said:
I just came inside and am having the same thing. I can barely hold the baby and I feel sick.
I think intolerance to extremes of hot and cold are “normal” for my lupus condition. In the heat I sweat so much I could change clothes 5 times a day! Yet, when I get too cold in air conditioning a little warmth…not in the sun…helps some of the aches. I would recommend drinking plenty of water or Gatorade … Or whatever you like…not soda, so much…to help keep cool and your kidneys flushing your system. I find I do better with sandals, not socks and tennis shoes most of the time. Sometimes, if I am sitting I have a small fan blowing on my feet and lower legs. I always rest during the hottest part of the day…and do errands or shopping early or late in the day. I take Tylenol…bc of I had a stroke…for really achy days, but ask your doctor, what he/she recommends!
Know how you feel…just try to find something that works for you! Seasons change…eventually!
Everyone please listen to "Ann's" advice because if you've just been diagnosed but don't know actually what's linked with your symptoms and still going through tests or member's still waiting for furthur results but having symptoms, either way...you still need to avoid the sun as best as possible or if you have to go out cover up well and use protection member's have advised.
All member's who have had Lupus for years are just thinking of you in the best possible ways.
"Thank you Ann" for the links. xxx
Momma2mm,
I live in Central Texas and the temps are already in the 100's with the heat index at something like 108. These temps are expected to rise even higher next week. I do not go in the sun at all. If I go outside I stick to the shade only. However the shade does not protect me from the heat. I mainly stay in doors. Earlier this week the central air conditioning was not working properly and it was in the 90's INSIDE the house. I could barely move or breath and my pain pills were not working at all, I could not get comfortable no matter what and couldn't sleep. I had wet washcloths all over me and I felt like I had the worst case of the flu I've ever had.
This happens to me every single summer. I don't have to be in the heat for long at all. My Rheumy says that this heat sensitivity is due to the Lupus and I should avoid the heat as much as possible - obviously the sun as well, but he emphasized the heat when making this point. I do not seem to sweat very much which is not a good thing at all - I forget why it is not a good thing.
Please avoid going outside in the heat. If you have to go outside, please stay in the shade, use sun protection (I have tan lines from being in the shade) and maybe bring a spritzer bottle of water out with you to spritz yourself and even your baby with? It can help keep you cool for however long you are out there. This is what my doc recommended for me living here in Texas where there is not much escape for horrible summers - well, other than just not going outside at all!
I hope that some of this works for you Jenn! This heat is really miserable!
Draginfli
Our weather in Las Vegas is 106.To handle my joint pain in the summer, swimming is an excellent way to ease my joint pain and fatigue. I usually go early before 10 am. Lots of H2O 6-8 glasses a day. or fresh juice or teas.
I noticed in the summer months my appetite is way off, which contributes to my headaches. So I treat myself to fresh organic fruit and cold smoothies. The other day was another hot day 108. I had taken my meds and diarrhea developed with lots of abdominal pain. I wet a towel laid the towel on my stomach and laid down in a dark room. It was quiet time. We have to prepare for the heat and the discomfort, listen to the signs of our body with this disease and we can control some of the heat issues. Have a cool summer>>>>>>>
I need that angel its breathtaking. Tell me how I can get it.
Calvinia
Tez_20 said:
Hi Jenn,
This is quite normal with Lupus...our hotness here at the late 50s i can just only cope with.
Your joints will swell, as mind do on my knees alot and my hands go unrecognizable to my own body and refering tightness to the skin it gets bad if your feeling like me where you to slit the skin to let it breath, i find that really bad especially more with the legs as it's alot harder to walk then...when your aching all over try and get rest as much as possible and when your able to do things pace yourself slowly and still take rests in between...alot of member's have found by doing this it helps a great deal overdoing things will make symptoms feel double of what they felt before.
Your right nothing is normal with this disease and from one day to the next you never no what's waiting for you but it's all about learning your symptoms and trying your hardest to master them.
((Hugs Terri)) xxx
I was achy all over on Monday, but I think there was some kind of virus going around because my neck was hurting too. This is my first summer since I had my flare almost a year ago. Trying to manage the summer heat with foods like celery, cucumber and watermellon. Hoping it will alleviate some of the swelling I'm feeling and pain in knees.
Calvania - Swimming or just getting in the water is great! Smoothies sound awesome, I hadn't thought of that at all! Your like me with the cold wash cloths! Those feel really good! :)
I like the smoothie idea!
:) Draginfli
calvinia said:
Our weather in Las Vegas is 106.To handle my joint pain in the summer, swimming is an excellent way to ease my joint pain and fatigue. I usually go early before 10 am. Lots of H2O 6-8 glasses a day. or fresh juice or teas.
I noticed in the summer months my appetite is way off, which contributes to my headaches. So I treat myself to fresh organic fruit and cold smoothies. The other day was another hot day 108. I had taken my meds and diarrhea developed with lots of abdominal pain. I wet a towel laid the towel on my stomach and laid down in a dark room. It was quiet time. We have to prepare for the heat and the discomfort, listen to the signs of our body with this disease and we can control some of the heat issues. Have a cool summer>>>>>>>
I hadn't been in the sunshine at all yesterday. I do however, working at a coffee roasting facility (thankfully in the office), but even my office yesterday I had to beg for a fan. I will admit that since I'm so new to this illness, a lot of things I'm finding out the hard way. Although I do work in the office, I was out by our coffee roasters for about a half hour taking pictures for our website. While it was really neat to learn all about what happens when we roast certain coffees, I paid for it later.
I'm thinking I'm either starting another flare or I'm REALLY paying for my short time in the heat yesterday. I woke up this morning with cramping abdominal pain (same pain I've had many times before, so I have medicine for it), a sore at the corner of my mouth, fatigue, trouble breathing and horrible joint pain. This was even after getting a ton of sleep last night as I left work and went straight home to bed.
I go to my next Rheumy appt. on Thursday, so hopefully I can get on the right track medicine wise or something to start helping ease these symptoms. I'm a single mother and have to work, so taking off of work when I'm feeling crappy isn't really an option. :(
Hugs to all who are suffering :)
Jenn
The heat is also killing me. I was out in it for an hour and i broke out in a terrible rash all over. My hands started swelling. My feet turned purple and my toes were red… I cant stand the heat. Hot packs, hot showers, hot food, all leave red rashes and make me get dizzy. Cold isnt so bad as long as i keep warm… Heat is way worst to me then cold.
I have been finding the heat ia making my pain and flares worse . went to my rheumatologist today and she said exteme heat or extreme cold affects lupus patients so i know its not just me . She said just try to stay in air conditioning. I hope this advice helps. Been a real tough few weeks for me
Hi there , i know what you mean about the heat an the pain !!!! smile I live in Georgia , and the temp. has been CRAZIE!!!! I can't really go outside for a long time( the sun burns me nd leave red marks on my skin- it hurts so bad ) .And i also have the butterfly rash , which flares at times , and itch really bad when i sweat , so i just try to stay inside as much as possible under the aircondition / or fan. Yes this disease is never normal for us , it's always changeing ( exspecially with the weather - the rain is what gets me ) , if it rains am in the bed on the heating pad , with bathroom trips only!!!! smile . I think that the doctors guess at what could happen to us - they really don't know !!!! But being here on this site , we share our stories and pains to help one another get through the rough moments - it has really helped me alot to deal with this LUPUS stuff. Hope that you find the answer that you are looking for and the comfort of knowing , talk with you later ....Beverly L.
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