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Jerzi
07-14-2009, 10:19 PM
For the past week and a half (quickly approaching two weeks) I've been rendered pretty much useless due to my crazy amount of fatigue and pain. I wake up every morining feeling like a train hit me while I was asleep for my usual three hours, then I can't even roll out of bed. I try to shuffle myself to the living room just so I'm not confined to my bed all day, but that drains me even more and after I get to the couch I'm down for quite a few hours.
I can't even manage to eat anymore and have lost 15 pounds as a result. It's just getting ridiculous and I'm sick and tired of being sick and tired. This is the summer of my graduation and so far I've spent it lying on the couch unable to move. I'm making an appointment with my doctor tomorrow to see what can be done (he seems to be the only person outside my family I see anymore). But I'd also appreciate any advice from people who have experienced this level of exhaustion. Is there anything I can do on my own to get myself moving again? I was hoping to go out and get a job, but I can't really do that when I can hardly stand up for five minutes without my legs killing me and wanting to buckle.

debbie-b
07-15-2009, 04:27 AM
I am sorry, that you have it this bad. I have had it, but not to this extend. The only one who might be able to help you, is your doc, so make an appointment and try to get in asap. I hope you feel better soon, and you HAVE to eat. Feel better.

Debbie

Oluwa
07-15-2009, 05:01 AM
Jerzi...Hi...hugs

I was wondering for you if it is because of your little sleep. Three hours is not enough for us. Little sleep is probably contributing to your overwhelming fatigue and pain. Perhaps ask for a sleep aid. I find for me, Lunesta is best over Ambien. I am out in 15 minutes, sleep hard, sleep good and wake without any additonal fatigue or drowsiness...

I see you take Tramacet...do you pop one before going to bed, oh about a half hour prior so it kicks in just before you go to bed to stop the train hit feeling when you wake? Maybe this will help lessens the fatigue by getting a night of rest. I do that with my Lortab...aka Vicodin for my pain, that leads to sleeping nights, that then stops the domino effects into overwhelming fatigue and pain.... I sleep hard, I don't wake in the middle of night with pain, unable move or roll over...and I feel better in the morning.

If that doesn't help...ask for a little stronger pain reliever.

Pain, fatigue, and a sleeplessness night is such a vicious circle...we have to remove one of the elements...and for me it starts with getting sleep to conquer the other two or bring them to atleast a manageable place. Try one of the things I listed above...

Have you been evaluated for Fibromyalgia?

Hope tonight is better and tomorrow will start with a skip in your step and not just a shuffle.

And do eat, no food intake creates weakness and fatigue. Me..sick or not I always, always eat. Atleast drink a protein drink, Ensure, Special K....eat a bowl cereal, Kashi..very nutritiousness with milk..a banana.

Call the doc, the earlier you call the quicker you will get in...there is so much treatment out there, no one needs ot be in such pain and fatigue...do call..now...hugs.

Love,
Oluwa

mountaindreamer
07-15-2009, 05:09 AM
hi jerzi,

so sorry you are spending your summer dealing with this fatigue. I agree with others....call your dr., there is treatment out there that will help with this. I also see you are on prednisone.....this could be interferring with sleeping and eating. I, like oluwa, find that if i can get enough sleep, the other symptoms will be reduced....sleep seems to really be the key to dealing with everything.

good luck, hope the dr. can help you.

ritzbit
07-15-2009, 05:25 AM
Im sorry that you're going through this too. I've been dealing with the same thing on and off for weeks, though maybe not quite as bad as yours. I went to my doctor about it and along with other things they think becuz of the way I've been sleeping I might be showing signs of fibromyalgia. What my doctor put a huge emphasis on was getting enough sleep and exercise. So I've been trying to go to bed around 11 or 12 instead of 2 or 3. It really has helped along with maybe walking or something for like 10 min. I hope you start feeling better soon.

Angel Oliver
07-15-2009, 07:16 AM
Oh im so sorry to hear what you are going through.So many of us understand you.
I see you have been given excellent advice so far. Make that appointment today.You need urgent attention.You must eat and get a proper assessment and soon.
Im thinking of you
love Amanda.xxxx

crmj1183
07-15-2009, 08:46 AM
Hi Jerzee,

My heart is really aching for you because i know how you feel, I ve been there and I think we have all been there at some point before. Things will get better, I just hope soon. Thats the thing about lupus we always get better... but when is the question or how soon and when we sre going through the flares it seems like an eternity. Go see your doctor, they can definitely get you some meds to get you through this. Im sending you hugs.... Feel better and try and stay positive:yes:

Chriss

Jerzi
07-15-2009, 03:16 PM
Thank you all so much for your advice on this. It's just been ridiculous and I'm hoping the doctor can figure out something to get me out of this vicious circle of sleeplessness, pain and fatigue. I've been forcing myself to take mini-walks around the house every half-hour/hour and took the advice about the protein drinks (it's better than no food).
As for the Tramacet matter, I'm thinking it's just not working for me. I've been on it for a while and it never really helped pain wise so I'm going to bring it up with my doctor that I may need something stronger (at least for nights). I'm also going to bring up the sleeping aid idea.
Once again, thank you all so much for your advice. I'm sorry that each of you have had to deal with these shenanigans.
<3

Mellie
07-15-2009, 06:19 PM
Hi,

I just got done with a bad flare up like what you described, with nauseau. My husband had to help me out of bed. I missed a bunch of work and slept 10-12 hours a day...ect. I went to the doc a couple times and this is what he did...

My rheumy increased my prednisone (sucks because I am trying to get off of it) to 60mg a day for three days, then 40mg for a few days , then 20 mg till the bottle is gone. Plus he prescribed vicodin for the pain.

It was awful, but hopefully it'll be over for you soon, so you can enjoy your summer.

Melissa

Danica01
07-15-2009, 08:07 PM
I do feel like that at times but Oluwa is right........I only feel like that when I do not sleep. It is a vicious cycle that will gt us if we let is go on for to long. I use a sleep aid and I do not mind using it at all. Just knowing what I feel like when I don't sleep makes it all worth it. Be open and honest with your doctor about what you need for the pain and to help you sleep. He is the only one who can physically help you get through this. However, we can emotionally get you through this. Keep talking to us and keep us updated on what you and your doctor decide. I am thinking about you tonight and sending you gently hugs and thoughts of sleep :hug: Hang in there, it will get better, I promise!

Jerzi
07-17-2009, 12:48 AM
I'm not sure what to do right now. My current health still hasn't improved (but I have been drinking meal replacements just so I'm still getting some form of nutrients and snacking when I feel I can stomach it). The pains still ridiculous, and the fatigue is still horrid.
I called my doctor a few days ago and had issues getting through, then when he finally called back I found out he's going to be out of town for the next two weeks. I don't think I can wait two weeks for a doctors appointment. Does anyone know what I should do? I've gone to walk-in clinics in a pinch when I can't get into my doctor, but they just don't take me seriously. All they do is prescribe more naproxen (even when I tell them I'm already on it) and tell me to take some Tylenol.

Oluwa
07-17-2009, 05:13 AM
Jerzi..morning..

Does your doctor have another partner in his office..or a Physician Assistant or make an appointment with your Primary Physician..he should have some of your records to know your status and be able to treat you.

Also too, ask to be evaluated for Fibromyalgia...
Ask about Flexeril - muscle relaxer..., Lortab..stronger pain reliever and Lunesta...sleep aid...

Are you dosing with any immune suppressants? Steroids? If not, a round of steroids, taper pack may bring you out of this flare...

Being so tired have you been showering? Times a nice longer than usual warm shower can help to loosen the pain's grip, not rid yourself of it..but may bring it to a manageable place.

Have you ever tried those heated rub creams..Capzasin Topical Analgesic Gel? I was just reading in my All About Fibromyalgia..a great read by the way and it says that may help...

It is important to keep getting healthy, nutritious food into you...stretch everyday..a little so you don't stiffen up.

Do you take supplements..Fish Oil for inflammation?

Are you under any stress at home..family, work, friends...if so , find ways to manage it...

These are things to consider to manage your Lupus, to prevent flares before they happen...eat healthy, exercise..even if it is just stretching, walking.., manage stress, take medication on schedule...keep appointments, avoid junk food..avoid the sun, use sunblock....

I wish you wellness soon, Jerzi..hugs.
Love,
Oluwa

Jerzi
07-17-2009, 05:33 AM
Morning to you too, Oluwa, and thank you for taking the time to reply (again).

I'm making an appointment with my primary physician today (I don't know why I didn't think to do that, I've been so out of it). And I wrote down in my medical journal to ask about fibromyalgia. My aunt seems to think that may be whats going on, as well, and I'm trusting her opinion on it considering she has it herself.
Showers have been a bit of a trial, but I have been throwing myself into warm baths and piling on the hot water bottles and Absorbine Jr. (which I think is like that Capzasin Topical Analgesic Gel you mentioned). On that topic, I just looked up the Capzasin stuff, and am definitely going to give that one a try.
I do take fish oil, vitamin C, vitamin B12, vitamin E, calcium, and magnesium. It's quite the little line-up.

Thank you so much for taking the time out of your day to reply. It's nice to get advice from someone who has better understanding of my current situation. My family/friends are great, but they seem to have that 'walk it off' mentality when I get this sick. I greatly appreciate all your suggestions. =]

Hugs and spoons,
Jerzi
<3

Oluwa
07-17-2009, 07:02 AM
You're welcome Jerzi...

I find when I feel I have a direction to head towards.. through ideas, suggestions, a scheduled appointment.... those things help to ease a bit of the pain and fatigue. I think that is because I am feeling I have a more control over it...you too?

When we finally get to the doctors our symptoms seem to all but disappear sometimes...go figure.

Happy Friday.
Love,
Oluwa