I just experienced my first deep tissue with heat massage and I loved it. At first, I did not feel the effects, thinking (oh well I just spent money I will never see again) but now almost one hour later, I feel very relaxed and my knees are not bothering me for the moment. The deep heat treatment for my knees was needed. Last night I had extreme pains in my knee, in addition to insomnia. After the massage today, I am sleepy and my knees are not as painful.
One thing I do to maintain positive energy is to stay off unofficial Lupus websites, they can make you depressed, as I was becoming. Second, remain thankful for the good days you will have and the possibility of remission for some. My family is planning a trip to Florida in December because I can not deal with the extreme heat in the summer months. Hopefully, it will benefit me and not cause a flare.
Lastly, I love hearing stories of survivors with Lupus for years, with children and lead full lives, these posts warm my heart and give me hope when I feel upset and unlucky for having inherited this illness. Sharing stories of hope, love and acceptance within the lupus community and sharing coping strategies can help to improve our outlook on quality of life. So, please keep all the stories coming about living with lupus and finding balance as I am eager to read and envision similar successes in my life.
I am pleased the massage helped in many ways but concerning your insomina my hubby suffers with that and it must be so stressful trying to get sleep when you need it, especially with the Lupus.
I used to have the massages years back and they was stopped for some unknown reason it used to start my seizures off?? but so relaxing afterwards.
I cope daily just hoping to get out of bed and being able to walk more than anything. xx
Has walking now become a problem Tez_20? Is that a stage of Lupus?
Tez_20 said:
I am pleased the massage helped in many ways but concerning your insomina my hubby suffers with that and it must be so stressful trying to get sleep when you need it, especially with the Lupus.
I used to have the massages years back and they was stopped for some unknown reason it used to start my seizures off?? but so relaxing afterwards.
I cope daily just hoping to get out of bed and being able to walk more than anything. xx
Within the last 2yrs since being diagnosed 5yrs ago but i was born with it and never knew...my body as gone down hill quickly with the muscle wastage of the sjogrens and having todds-paralasis, then the lupus cramps my joints up and body frame besides having spasms....i have to use walking sticks/3 wheeler rollater which as been a god send and if i go paralized my wheelchair and if i wanted to walk out that's a no go situation because of my joints so it's my electric scooter but alot of the time i keep indoors, due to my raynauds connected with my DLE.
Unshoreandscared said:
Has walking now become a problem Tez_20? Is that a stage of Lupus?
Tez_20 said:
I am pleased the massage helped in many ways but concerning your insomina my hubby suffers with that and it must be so stressful trying to get sleep when you need it, especially with the Lupus.
I used to have the massages years back and they was stopped for some unknown reason it used to start my seizures off?? but so relaxing afterwards.
I cope daily just hoping to get out of bed and being able to walk more than anything. xx
Sjogren's is a pain and very strong in my system is it the same with you also??
I get nose sores with bleeding. odd mouth ulcer/dry mouth/dry gullet and it hurts swallowing/ paralization in the face as it causes muscle wastage and the sister up the hospital said it works from the face downwards well it's affected my legs and walking more/leg and muscle spasms ....as anyone said you've had it all your life or was born with it. xx
My RA said the Sjoren's is primary and the SLE is secondary, but, a second opinion did not agree. But, the two are interchangeable at times. I get mouth ulcers roof of my mouth near my teeth at times, but only when there is a flare. I have feeling of nose hairs out of place. Are you on Salagen? its for sjoren's.
If i was in your place and this is my opinion i'd be going by the second opinion because they can be interchangeable at times, in other words the symptoms swap and change that much it's like your body doing a riot act. I've had the ulcers at the back of my gums but have cleared up quickly, i don't get the feeling nose hairs are out of place but because the sores i develope up my nose hit my left more, they cut across the bone in my nose and my nostril looks like it being eaten away and my nostril seem bigger than the other like as if it's hollow.
I'm not taking no meds for it as they don't want to take risks with other meds i'm on because i'm on high dosages as it is.
After 15yrs of pain and thinking i had gallstones i was sent to a gastro specialist i've seen before and knows about lupus, he tested me for coeliac disease that came back negative, then a biopsy was done of my bowels and i've got bad IBS and taking spasm tablets 3 times daily and medicine to help regarding the toilet....i've had 6 various operations to help regarding lupus and symptoms it's caused and i had an operation in february and now this stroke...what next i wonder.
Unshoreandscared said:
My RA said the Sjoren's is primary and the SLE is secondary, but, a second opinion did not agree. But, the two are interchangeable at times. I get mouth ulcers roof of my mouth near my teeth at times, but only when there is a flare. I have feeling of nose hairs out of place. Are you on Salagen? its for sjoren's.
All i can say is trhe best of luck you seem really boosted up which is good and i hope all goes well but you have pointed this issue out about vitamin D deficiency, that's one thing i've never asked my GP about although bloods are done regular and i'll watch the links tomorrow and see how you get on as it's time for bed for me.
All i can say is trhe best of luck you seem really boosted up which is good and i hope all goes well but you have pointed this issue out about vitamin D deficiency, that's one thing i've never asked my GP about although bloods are done regular and i'll watch the links tomorrow and see how you get on as it's time for bed for me.
Watched the video mate and kept stopping to tell ste some of it, no wonder we brits are so ill and especially dark haired people like us mainly and i was born with a brownish tan also, it sounded brill mate on how it was explained and thanks for the music at the end.lol
I hope the seminar went well for you mate plus your cous cous went down well...can't wait to hear how it went.
I try and take things day by day... Thats the only thing I can do at this point. I try not to let things get me stressed cause that there can really cause a flare, thank god for my oldest daughter, she helps me so much around the house and also with my 3 year old, I try not to put to much on my husband cause he is the only one that is working right know and I know that he gets enough stress at work. But when I have my good days I always make it up to them by cooking every one there favorite meals. I get alot of the cleaning, and wash done. My husband aways say when he comes home and house is cleaned and dinner is done that mom must be having a good day... and I love to hear him say that....
I said i'd watch them because it was late the night before...but listening to how english people can be affected to other area's shocked me and straight away, i thought no wonder i'm ill like i am.
I'll view your video's later Ann and pleased your dinner went down well....alot of foods which sound so lovely i can eat as th sjogren's alone stops me and the IBS ontop ahhhhhhh.lol
Well in all you had a great night at the seminar and seeing friends topped your night, i am so pleased for you ann. xxx
It won't hurt you to rest and i have a friend who orders shopping on line also....i send my hubby over to morrisons to get ours.lol
If you don't mind me asking what's prime membership, i understand if you don't want to answer and it will do you good to stop in bed and rest. xxx
Ann A. said:
Of course, after my adventure yesterday, I cannot walk well enough to go shopping today. So I am ordering groceries through a service that delivers locally grown and organic foods. I still do not have access to Walmart's Groceries to Go. But I have used their "free delivery on orders over $45" to stock up on heavy and bulky household items. And what they don't have I will order from amazon. I derive great benefit from my prime membership. I am going to stay right here in my bed and study. I like being retired right now.
Is prime in all states or is their a subsidiary name? Now, I shop at Sam's club to elevate the walking around for items and less joint pain during flares. I can order my items online, when they are pulled an email is sent to me and I go, pay and get them from the customer service desk.
Ann, that membership does'nt sound bad for the year with what you get with it like you mentioned and it's more handy with you living on your own and you can't moan with a 2 day delivery.
Well besides the site and the staffyclub and my family tree with Genes Reunited, i don't bother with Amazon but my hubby does with ebay, so if i want anything i take a browse pay him sometimes and he orders...i got my electric scooter off there with a firm and 6mths guarantee....otherwise he does the main shopping.lol
I hope your rest as done you some good. xxx
Ann A. said:
Prime membership is a yearly fee of $80. Then for that year you get free two day delivery on many of the items that are sold by amazon and you get access to a large number of television shows and movies online at no additional charge, and access to some kindle books. I really love the two day delivery. I can need something on Monday and have it on Wednesday. And because there is a facility not to far from where I live, I get many items in one day. I live alone and sometimes I can want or need something but I can't just get myself together to drive to the store to get it. So, I go ahead and order it and it is often here before I would have made it to the store.
The weight of what I order doesn't change this - as long as it is prime eligible - there is no additional charge for delivery. I can see that this the business Walmart wants me to send their way.