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crystalcandance
01-08-2008, 11:01 PM
ok so i think im having another flare...it started about 5-7 days ago- with extreme fatigue- i mean 15 hours of sleep i still dont want to move...for days and even if i try to sleep like 8 - still not enough- so i know its not from over sleeping cuz i feel a little better with the 15- but still not totally revived...but then I started with muscle spasms 4 nights ago and 3 days- all in my back from my neck to my back just over and over all day all night...and then today my wrists and knees hit me with the joint pain - so i'm guessing a flare??? I finally gave in- I have a really big concern about these steriods b/c of the weight gain...argh! I just finished being pregnant for literally 3 years with a couple month breaks...3 miscarriages in a row and 2 pregnancies one 40 weeks and one 36 weeks. I just want to lose the 15 lbs i still need to and steriods aren't going to help. called the rhuemy said to take the steriods- if they dont work to call her back...does anyone suffer from muscle spasms with Lupus? I havent heard much about that and Lupus just a polll i thought i'd ask....PS I LOVE THIS SITE THANKS TO EVERYONE FOR ALL THEIR ADVICE AND FRIENDLINESS even if i never get the L dx I'm sticking around- you people are sure growin on me :lol:

crystalcandance
01-09-2008, 02:49 PM
its me again- does anyone know how long it normally takes until the steriods kick in and work???

Faith
01-09-2008, 04:32 PM
Hey Crystalcandace,

You are growing on us too. lol.

If you don't want to take steroids, ask for a kenalog shot for joint pain; no weight gain nor sleep problems and you can have one every 3 months!!

A couple of questions for you. First, do the spasms feel like you have pulled a bunch of muscles and burn? Is it neck and upper back only or is it also lower back? Specifically, is it shooting pain down the lower back to buttocks?

Lupus is normally associated with joint pain. What you have somewhat described sounds like, I am not a dr, Fibromyalgia. I have Fibro; and steroids aren't going to help you with it at all. Bathes, and a prescription for Flexeril 10 mg (nightime) will relieve the pain along with a heating pad. Muscle relaxants usually help. I cut the Flexeril in half and take one-half at 8:00 pm and the other half at 9:00. Previously, I was waking up in the middle of the night with leg spasms; it's definately not fun!! FM is another auto-immune disease that follows Lupus. When you have one auto-immune, there is a 60% chance of having another.

I have also found a device called Light Relief with heat; google it. It helps with the pain; I just wish I had a couple of them. lol. Check out a couple of books, one is by Maureen Pratt, who wrote a book on Coping or Living with Lupus (amazon or library). The other book is by Daniel J. Wallace and it is called All About Fibromyalgia, A Guide for Patients and Their Families. It can be found at amazon or through your local library. They are both awesome and explain what Fm is and how it effects your body.

I would call your rhuemy and talk to him/her. Have you checked on the life insurance as we previously discussed? I wish you the best and keep us updated.

Take care,

Faith 8)

MommyKaren
01-09-2008, 04:55 PM
I was sent to a Urologist because I wasn't retaining my magnesium levels. I take Magnesium Oxide daily. The doctor said that the Lupus appeared to have damaged my kidneys slightly causing me not to retain magnesium. Tell your dr about the spasms, they will probably recommend checking potasium and a few other things, they don't usually think of magnesium, so you might want to ask. I felt funny asking about it but my levels ended up being low so, it was worth it.... my spasms stopped

Numpty
01-09-2008, 05:40 PM
Are only joints affected with Lupus? I have no dx yet but have started to have sore joints along with an aching (sp?) crampy feeling that really hurts. It feels like a dead leg (remember those from school?) only about 5 times worse and it doesn't seem to want to go away! At the moment I have that between my right knee and ankle, front and back of the leg.

I think its gonna be time to break out the walking stick for the first time tomorrow! :shock:

crystalcandance
01-09-2008, 07:11 PM
The muscle spasms I have burn btwn my shoulder blades...its more of a striking though- they migrate in striking pains up and down my back from my neck to my mid back specifically on the left and right of my spine. I also have a pain in my lower back - where it feels like a ton of pressure has been placed on my back- like an elephant...sometimes i cant walk for a minute i just stoop and hold it. I am really irked...I started the steriods and yesterday I felt a little better not as severe...but today its like my back is a huuuuuge spasm and it hurts in my lower back to sit stand walk...etc. I'm in more pain today then ever have been. The heating pad remedy works for me- actually I've been sleeping on the couch with one with a massager and its the only way I can get some rest lately. I have used flexorol before - knocks me off my socks after an hour or 2. Only thing with that is my kiddos are young- 21 months and 10 months...so i dunno...but if the pain isnt better by tomorrow i dont think i can bare any longer - im calling the rhuemy..will make sure to ask about magnesium. Hopefully I get some answers soon cuz I dont think I can take another day like today!! argh!! :mad:

crystalcandance
01-09-2008, 07:15 PM
yes and since yesterday my joint pain has went not only from my wrists like usual- starts with the wrists and my fingers toes tops of feet and knees even hurt...i dont even like holding a cup it hurts to bad. or picking up my children...argh!!!!!

sick n tired
01-09-2008, 11:48 PM
Hi Crystal,

I have been diagnosed with sle and fibromyalgia. When I first went on steroids it took a few days for the fatigue and some of the lupus pain to subside. It was miraculous for me. I still had the fibro pain, though. Thats the thing. If some of these spasms are fibro related, then I don't think that the prednisone helps.
I also have those spasms and it is the pits.

I hope that you wake up tomorrow a new woman, :D

In Him,

Karen
:B-fly:

Faith
01-09-2008, 11:53 PM
Hi crystal,

Is the pain in your feet joint of burning across the top and sides of your feet? If it is burning or striking; more than likely Fibro. I would talk with your rhuemy about muscle relaxants. Another natural alternative is to get an rx for therapy "anodyne infrared therapy" which with Fibro. The copay is usually $5.00 per visit and it really does relieve the pain.

Keep us updated and I hope you feel much better.

Faith 8)

crystalcandance
01-10-2008, 08:18 AM
nah its not burning on my feet...its def. achy arthritis pain...just my joints hurt...ya know- my tops of my feet i'd say just hurt all together...kinda as bad as my fingers do...thanks for all the input...so far just got up- feeling a little better...last night i didnt sleep very well- went from couch to bed at least 3 times...we will see hopefully i feell this much better all day :roll:

crystalcandance
01-11-2008, 08:12 AM
So I called my rheumy yesterday and told them the prednisone is not taking away the spasms and what to do...well the nurse called me back- missed her call- so i called her back an hour later and she had already called me in a prescription for flexorol...I LOVE MY NEW RHEUMY! She listens so well and doesnt act like I'm crazy. The docs on base won't even give me meds ever anymore...they just told me while i was waiting to see the rheumy for th first time to call for cancellations and they cant do anything about it. i mean seriously when somone comes in to your office and says they cant sleep for days b/c of it and they are in tears- you think you would give them a muscle relaxor....nonsense lol...but i'm excited...i think this ones a keeper only deal is in one month I'm moving far away ARGH! yay for the new rheumy anyways!! heres to the good docs :lol:

luvwine2007
01-11-2008, 09:36 AM
I'm glad you got a good rheumy! Doesn't it make all the difference in the world? I had lots of problems with drs on base...they wouldn't listen, or they gave me medicine just to shut me up (which I didn't take because it wasn't what I needed). Then they sent me to a military rheumatologist and he said I caused the joint pain myself by cracking my knuckles!!! :!:
Nevermind that there is a history of lupus in my family and my ANA was positive at the time. He ran one blood test to test my liver...that's it!

Anyhow, a good dr that listens is such a blessing!!

crystalcandance
01-11-2008, 03:20 PM
oh i know the story...i've been getting the run around with the base doctors for some time now- luckily i see a cardiologist off base and got him to run some inital tests and then brought the docs on base those test results...on the down side though- the base doctors will not prescribe me anything- and my ana (1:80) but negative so they dx me without lupus but with APS (antiphosopholipid syndrome) but had to send me to a rheumy for the APS anyways so I kinda got lucky. I know how these base doctors can be- being a military brat i def. know...my mother almsot died b/c of medical neglect telling her it was all in her head- and had to rushed (medi-vacced) to a different state after an entire month of going to the base ER everyday - b/c her entire body was shutting down organ by organ. And instead of sueing due to her life span was only 6 more months...they gave her - her medical records and had a deal worked out where she could see any doctor she wanted anytime and they would pay. Never having to go to the base again. So I def. know how they can be on a base. But do you really blame them- I mean it sucks b/c most of them 90% dont even have a doctrate degree...its very rare if you find one with one...b/c most just go to the basic training and air force medical school and be on with their way. So I dont know why I expect such better care from them- given the circumstances lol...Sorry about your run around with the base doctors too! At least here's to us all getting better medical care! I pray it will be better when my children are my age! :mad:

crystalcandance
01-12-2008, 07:31 PM
just wanted everyoen to know that after 8 days of pain- i am feeling a bit better today! yippee i prob wont be too much longer though cuz i went through a huge cleaning spree cuz i felt good at the time lol...man i really need to take it easy some days but it just feels sooo good to fell normal occasionally that i go over board..welp gonna go lay on the couch on a heating massager and watch t.v. and then get some shut eye early since i feel sooo great today! hope everyone else is having a fantastic day! :lol:

Faith
01-13-2008, 12:25 AM
Hi Crystal,

I am glad to hear you are feeling better. Just remember; don't overdo it or you may pay for it. I seem to do the same; and I am learning the hard way. lol.

Hope you have a wonderful and restful weekend.

Take care,

Faith 8)

sick n tired
01-13-2008, 12:41 AM
Hey Crystal,

Great news that you are feeling better. I also have a tendancy to overdo it when I am feeling better. But Oh the fun.

In Him,

Karen

crystalcandance
01-23-2008, 08:29 PM
Just wanted to update everyone...I have my big appt tomorrow with my follow up on lab work with the new rheumy! So crossing fingers maybe this time they can figure something out...and You know what I'm sooo glad I finally took the prednisone...I've been feeling good since my last post...a couple of days with mild pain but I dont think I've felt this great in FOREVER!!!!!!!! Yay me - lets not jinx it though lol...Anyways would like to say hi to everyone- sorry been super busy getting ready to move and all...Hope everyone is doing great!

Candace :lol:

sick n tired
01-23-2008, 08:35 PM
Yay Candace!!!!!

Prednisone is great.........My doc said that was as much a diagnostic tool as some of the others because if you have fibromyalgia then prednisone doesn't touch that pain, but the fact that you are feeling remarkably better says that something is there. He said that before my bloodwork came in.

Here's to a diagnosis,

Karen