Where did the energy I never had go?

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pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 9/30/2010 1:17 PM (GMT -6)   
So I always struggle with energy - even before I was diagnosed with lupus - understandably since I have Chronic Fatigue syndroome and Fibro as well...but as many of you read I went through a heck of a flare for a good 6 weeks with chest symptoms then extreme leg and joint pain.  Well now that I've finished my prednisone titer I can't stay awake for the life of me...and not even sleepiness..just energy.  If I take one 20 minute call for work, I lay down afterward huffing and puffing and heart racing like I just did a workout!  Then I can sleep  for 2 hours and still feel exhausted.  Even taking the energy to type this is making me feel like I'm going to crash. 
 
I'm finally starting to recognize flare signs but I'm scared to death because yesterday my lymph nodes in my underarms were so sore I was walking around all day like a weirdo with my arms out.  This is exactly how the last 6 or so week flare started and now I do one little task for work like an email then its sleep time for me.  I've never been this exhausted...and it may be my other illnesses flaring up too but I'm nervous...I'm trying to sleep as often as my body tells me to because I DO NOT want to have another 2 month long flare...but man...I thought I didn't have any energy before...so now I have less than no energy!  Even the thought of doing something is too exhausting to do it. 
 
Wow I feel like this is the least of my worries considering how much pain I was in before this is nothing at all and I can DEFINITELY deal with this symptom, its just affecting my work for sure...do you guys deal with this a lot harder when a flare is coming on or while you're in one?  And does sleeping more help keep the flare at bay?  Thanks so much!

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/1/2010 2:29 PM (GMT -6)   
Hi Penn. It sounds like a few weeks of sleep are calling your name. I'm sorry you have to work feeling this way. The bad news is lots of us get the blinding fatigue before a flare starts and of course the fatigue just continues thru the flare. Once this happens several times you will be able to tell if it's lupus, fibro or both from the type of pain. You need to see your rheumy. Mine will change my prednisone, give me an "all over" steriod shot or both. I can't imagine having chronic fatigue too. What a rough combination.
 
I went on disability in 2008 and although I was a type A, go for it woman, I don't miss work at all. When lupus started I went to bed every day about 1 1/2 hours after I got home. Even if sleep doesn't ward off a flare, I had no choice what so ever. Oh BTW, for me sometimes mind numbing fatigue for weeks is the flare. Go figure.  Love, Butterflake
 
 

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/1/2010 8:05 PM (GMT -6)   
Hi butter flake...thank you soooo much for answering my post I was starting to think I wouldnt get any answers to this one. My pain gets so bad at times just like many others, that I almost felt bad about complaining about this exhaustion.

Well I did take your advice and have been taking naps whenever I feel the tiredness come on...which is easier since ive been working from home. It's weird when you said about sleeping an hour and a half because that's exactly what I used to do! I had to...and now these naps are usually an hour and a half. I was right about the flare sign because today I started to get that bone crushing type pain again in my arms and legs as well as horrible joint pain.

I'm so frustrated with my roomy I need to find a new one but either way I think I'll be going back on prednisone...just gained almost 15 lbs from the last 14 day titer :( I asked if others got that bone crushing type pain before and not too many answered so I thought maybe it was just that my joints hurt so bad it felt like the rest of me. Then today I found a question someone posted that described it as "something eating away at the bone" or broken bones as they are healing but hers was from her fibromyalgia....I just never really had it until 3 months ago.

Well sorry for blabbering on, but basically I was grateful to get your response and am definitely taking your advice to go see my rheumy...even if it's a new one, first thing next week! Thanks again!

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/1/2010 8:11 PM (GMT -6)   
Oh...and I meant to ask, what did you mean by 'even though I was type a'? I'm 26 and got my masters degree and can work from home so I'm really trying to hold on to it...but I feel like even though I have very understanding coworkers, I feel like it's hard to be my best because of either being in a flare or being exhausted...and not doing my best drives me crazy.

I recently started to volunteer with the local chapter and that I love...but it's so hard to commit to anything. Even if I feel well in the morning by evening i may have to cancel...so frustrating. Anyway, since it sounds like you have lupus and fibro, what was the disability process like for you? My company has long term disability as well so i would get both I guess? The only thing that worries me is the director of pain management told me to keep working as long as I possibly could because his patients always get worse once they stop...although I think I could fill my time...thanks again so much!

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/3/2010 5:45 PM (GMT -6)   
PennState it seems more than 1 or 2 members have dropped our forum. That's the only reason I think there aren't more replys. As for my type A personality, I joined the Air Force, married, had a beautiful daughter, divorced, worked in a Federal prison hospital, finally I got my BS in medical technology at 36 from Missouri State, moved to AZ and became a health services administrator for 600 inmates, moved to Las Vegas & quit prison, became an epidemiologist, founded a non-profit to fight antibiotic resistance (it's still running), moved to Atlanta worked at CDC for 6 years before disability. I was always taking on as much as I possibly could.
 
At CDC I used to travel the country, but when I became sick I had to work in a lab ordering supplies, then they set me up working at home, but finally I became so sick I could barely walk with my walker and just had to quit. Here's a BIG tip: make copies of all your medical records from ALL your doctors. Keep it up to date because when you finally must quit you will be too sick to get them. You will need them for both types of disability. I get Social Security and Federal disability.
 
It took me 2 years to get diagnosed. I continued working a couple of years while trying different meds and feeling like crap. Anyway, I had a stack of medical records 8 inches high and my Federal (work) disability was approved in one month.
 
As for volunteering, I suggest you don't until you get your diseases under control. Any time I am obligated to do something I still have anxiety issues. (Depression was my first lupus symptom) I mean it's great that you want to , but it's taking precious energy.
 
Everyone should read The Spoon Theory at www.butyoudontlooksick.com
 
Lastly my bones hurt too. I've gained almost 100 pounds thanks to prednisone and comfort food and I'm scheduled to get a gastric by-pass Nov 11. I can hardly wait for the surgery. More importantly, I've never missed working. It's work just maintaining my health. I'm sorry this is so long. There was just something about you that sent my fingers flying on this keyboard. Love, Butterflake

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/5/2010 10:41 PM (GMT -6)   
Hi butter flake - don't apologize for length as I always go on...I totally get the type A...I can't believe you did so much! I was just grateful i got my MBA before the worst of this started.

Turns out all of the exhaustion was a sure sign of a flare...I'm now sore and aching from head to foot and the meds that are the only way I can get out of bed in the morning are not working...it's just pain everywhere even on soma, norco and valium. My lidocaine gel is helping the joints a little but unless I can take a bath in it....

And about the work...it's been working well being able to work from home but now I'm stuck in a different city for 3 days in a full blown flare. Starting to get the disability. I'm so worried about becoming a bedbugs and never getting out and going crazy...I can see myself doing that. And the spoon theory is my favorite, vie explained it to people and ant it off...been when I thought I only had fibro. I agree about the medical records too...I keep everything from everywhere!

The prednisone helped a little but I've been off it for 5days and still eating a lot! I'm nearbous about being on it long term but I need some help. I started taking a little ibuprofen again and right away my ulcer started acting up so I'm just at a loss...this just stinks...i've always had at least 2 hours here and there of relief...thanks so much for your responses...they're so reassuring...

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/7/2010 8:24 AM (GMT -6)   
Hi Pennstate. I hope you're back home from your trip and your pain is under control. My favorite OTC med for pain is Tylenol Arthritis Pain Formula. Usually it lasts for at least a few hours. Also take warm/hot baths with epsom salts. I like it with lavender. Epsom salts is an old remedy and I know several on the forum who bathe with it. On bad days I soak while reading a magazine. Lastly, my prescription pain meds are neurontin and celebrex. You might not be able to take celebrex due to your ulcer. I'm not familiar with your pain meds, but tell your rheumy they aren't working cause there are lots more you can try. Your internist can prescribe pain meds too. One last side note: pain causes fatigue. Often if I get pain relief I have more energy. I sure hope you're feeling a bit better. Love, Butterflake 

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/10/2010 11:11 PM (GMT -6)   
I was actually just going to start a new link on this because I'm constantly in so much pain. I tried tramadol which didn't work and with my fiber being so bad I take soma as my muscle realxer and low dose Valium inserted which helps with a lot of pelvic pain. Then norco is my pain med and I use lidocaine patches but I am still in so much pain it makes me cry. Try the baths and my parents have a hottub and made a massage oil including lavender with a few other things. Also on savella and low dose select along with the plaque nil but it's only been 2 moths.

They finally put me on 10mg daily then down to 5 hopefully of prednisone. I'm just constantly in so much pain...especially in my knees and lower legs and even all the meds and lidocaine...I het maybe an hour of relief. I wondered about cele Rex but k ow there were some articles about problems. I just don't know what to do. Ithink you mentioned the perfect thing...my pcp is amazing and does so much but I really need an amazing Internist....other than that I'm up until at least 4 every night in pain, running out of my meeds early because it's nit enough and on top of all of that that makes me fatigued like you said...it drives me nuts. Then I can't remember anything because I'm so out of it. The pain causes my heart rate to constantly be in my card zone which of course makes me feel like vie ran miles lol.I know pain..a lot of diseases and 5 major surgeries by 26 so I'm not a Pansy in actually admitting it's so bad. I just didn't know if it got this bad for others. Ik ow it's a combo but I'm also nervous of getting tolerant to some of these meeds at 26. I was also wondering if there were any less strong pain meeds that come in a patch to avoid some of the stomach/lover/kidney stuff...I don't want to go to fentanyl anytime soon.

Sorry so long just so much pain and I walk around n stretch n I guess I just have to put up with this flare n hope the prednisone works and fine myself a darn good I ternist!!! Thanks sooo much for everything you've suggested. Not only have you given me great ideas but it's kicked my butt into gear with things I need to do. Thanks again <3

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/11/2010 8:55 AM (GMT -6)   
Hi Pennstate. Just reading your last line and it already sounds like you're kicking your butt in gear. Sometimes you have to to see ends results. You've only been on plaquenil 2 months, but usually it takes 4-6 months before you feel a difference. Took me 6 months now it's a staple. Try to be patient. Your rheumy will probably wait till plaquenil has had a chance then he may then try methotrexate, then imuran. I've taken the chemo drug Cellcept for 1 1/2 years and will probably always be on it to keep my neurological symptoms under control. Anyway, once you have been on some lupus drugs you will probably get some pain relief and energy.
 
I hate taking narcotics so when I do I make sure it's only for a few days. I'm sure addiction on top of all this sux big time. I've been taking prednisone daily for many months. I'm at 7mg now. Necessary evil.
 
Buy The Lupus Book, by Daniel Wallace. Many of us own a copy. I refer to it often.
 
Since plaquenil is the only lupus drug you've been on getting disabiliy might be hard, but when it comes time to file for disability, go to the Social Security site and fill out the form completely online. Gather ALL their required documents and take them to your local soc sec office. Don't let them get your documents even though they will cause it will take them forever. There's also lots to be said for helping them do their work- it's appreciated.
 
BTW I know you're not a Pansy. Lupus can be a dreadful disease. It took me years to find the right combination of lupus and pain drugs and I still flare often. Thank God the flares now usually last days instead of weeks. Love, Donna

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/11/2010 5:07 PM (GMT -6)   
I actually have the lupus book...well my grandfather is borrowing it at the moment because he's been going to upenn for years for interstitial lung disease and platelets etc. So we are thinking with all of the autoimmune he may have it too.

In any case, I'm definitely not addicted to the narcotics...don't get major withdrawal symptoms when I stop, I'm just really tolerant to them so I need higher doses to get by (or I literally cry in bed all day). Plus my first surgery was when I was 16 and have struggled from there. I've been diagnosed with interstitial cystitis for 5 years now and fiber and cfids for a year. I was on neuron tin for about a year up to about 2600 mg a day and they took me off bc it wasn't working. I ended up in every specialists office telling me they've tried everything. Even the director of pain management at a big teaching hospital where I live said he didn't know what to do bc my pain was so widespread and deep all over and I didn't want the pain patch this young. So I took almost 2 months off of work to do a pain management program that was considered the 'end of the line' chronic pain management program which was great but then I was diagnosed w.lupus dater. I'm saying all this because as far as disability goes knave a long history but the lupus is the strongest and it's the shortest amount of time. Ithink my best bet now is to find a great internist then a new rheumy and good specialists from there. They'll be able to handle the meeds and flares better I think when they realize exactly how far over my body this has gone.

Thanks again for all the suggestions...oh and do you take any supplements? I've heard a loft about fish oil too but but I eat a lot of fish so want to be sure it's not too much.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 10/11/2010 5:12 PM (GMT -6)   
Since I see that you have Fibro as well, has anyone ever suggested a trial of Lyrica? It's something to look into, at least.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/11/2010 5:47 PM (GMT -6)   
Wow I didn't know you've been sick so long. You poor sweet girl. I have a 25 y/o daughter who shows some lupus symptoms, but is still healthy. I feel so badly for you. I hope a good rheumy and internist really help. A good rheumy is willing to try everything and not give up. I have 3 main docs: rheumatologist for lupus, fibro, sjogrens; internist to keep track of my overall health; and a psychiatrist for obvious reasons.
 
I've tried so many meds I can't remember. Or is that just lupus fog? I took neurontin before diagnosis and took larger & larger doses. Then was taken off, but I've been back on it for a couple of years. In the right mix of meds 1200mg works well for me.
 
Take Lynn's advice and try Lyrica too.
 
My supplements are vitamin C, B complex, mult-vitamin and just recently flexamin. I took flax seed oil for years, but it didn't seem to help. Just beware of the folks who insist you try "their cure." I tried noni juice and flared big time. Love, Donna

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/11/2010 5:50 PM (GMT -6)   
Yes, I tried lyrica for a while. Unfortunately it didn't help at all. Now I'm on savella which has definitely helped more with the muscular and skin pain and I have vulvodynia and vulvar vestibulitis so it's helped with the nerve pain there....moreso than lyrica. Although some of my friends, it's been amazing for them.

I've heard of this new voltaren gel so I'm thinking maybe that may be a good suggestion. My knees N hips n ankles all the way thru...especially my thighs and mostly nonstop aching and pain in the front of the bottom of my legs. I've been using the lidocaine ointment but I can't even sleep it's so bad. Just hoping the prednisone helps and I can start to get off of everything else.

I just didn't know if other people had this kind of pain? Or if it's just a culmination of everything.

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/12/2010 7:12 AM (GMT -6)   

HI Pennstate. I get that kind of pain in my legs, but it only lasts 10-15 minutes so I just grit my teeth til it's over. This happens just a few times a month. As for sensitive skin, just last week while lying in bed my BF rubbed his whiskers against my leg and I snapped, "Don't do that!" and instanting curled into the fetal position.

Regardless, these pains are nothing like the horrible pain you describe. In the proper dosage prednisone works very quickly for lupus.  It generally doesn't work on fibro. That's why a good rheumy is so essential. I hope the voltaren gel helps. Love, Donna 


pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 10/12/2010 4:16 PM (GMT -6)   
Oh I really hope your daughter doesn't end up with lupus but it sounds like you're on top of it so at least it will be caught really early.  I feel like my rheumy isn't connecting the dots that maybe all of this for the last 13 years or so is connected...no reason I should have had all of those chronically infected organs (thank goodness that I didn't neccessarily need!)  I started looking up good internists in the area I'm just struggling with staying within the same teaching hospital system or going to the other larger system in the area...I'd like to stay with all doctors in the same beause its easier for records and potential er visits, etc.  I feel like they would be able to connect the dots a little better with everything going on and then go to my rheumy...especially because some of my diseases are not rheumatic. 
 
Now that you've mentioned your leg pain, I really think that I'm flaring with the lupus, fibro and cfids.  I can't keep awake during the day, but the prednisone has started to keep me up at night, my joints hurt like never before and are swollen...although I've only started on 10 mg about 3 days ago.  At first I couldn't tell if the pain was just shooting down my legs from my joints, but now I think its the fibro...nerves or cartilege in my legs...because its only been getting worse.  Today's the first day I thought maybe a little better til I started to drive then nope.  I thought maybe I was laying/sitting too much so walked around more which hurt...hurts when I lay or elevate.  No matter what I do its just like my bones are broken its really the only way i can describe it...like they're healing which I know I made a topic of on here before and not many people responded so maybe it really is more of the fibro.  I think I'm going to have to go see at least my family doc. tomorrow because its tough for me not to give in and head to the ER...especially a night like last night.  Hopefully just getting better from the prednisone and will keep getting better once one calms down..the rest will follow!!
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