[Sleepless Sue]

Good Evening...
I'm new at this. I'm also frustrated, confused, exhausted & getting a bit short tempered. I was told I have lupus last August. I didn't think much of it because I had no idea what it was. All I knew, was that the horrendous pain I'd been living with for the past 4 to 5 years was going to finally subside to a degree that I could at least live with. The "body" pain would get so bad that I'd occasionally toy with the idea of suicide. Problem was, I'm a big chicken. I figured that if my luck with suicide was as good as my luck with marriage, I'd be in really big trouble! So, on many days, one minute at a time became a chant. This past September, I began taking meds designed to treat Lupus along with Prednisone. By November, I can't begin to tell you how thrilled I was to be virtually pain-free for the first time in almost 5 very long years. There's a lot more to this but I'd rather get to my question(s).
I'm rather frustrated because I can't find anyone who can really help me with symptoms. I don't mean the pain. I know about that! Does anyone out there (once you've been diagnosed) experience periodic sleeplessness, fatigue or just plain want to rip into someone just because!? I also think I'm going through a bit of depression. I just don't care about much anymore & I seem to fret about stupid stuff. The more I try to ignore it, the worse it seems to get & the next thing I know, in the hour or two of sleep I may be able to steal, the junk enters my dreams! I've even set up a CD player in my bedroom and play a relaxation CD all night...it's cool! Its rainforest sounds with subliminal relaxation messages. Anyway, I don't get it. I was thrilled when I was finally diagnosed. I know that sounds weird, but at least I knew what was wrong and there was a light at the end of a most painful tunnel. Could it possibly be the colder than usual winter? Are colder winters harder on us than for others? My joints feel like ice blocks & I swear I'm going to break a limb because they feel like icicles! To make matters worse, I bundle up or sit with my hot water bottle between my legs to warm up my blood then I'm too hot!! I don't remember any of this stuff before, but that's probably because the pain was always there.
Anyway, if anyone out there can help, I'd appreciate a word of advise or two. I'm open to anything but I'd prefer a suggestion that doesn't include another drug!
Thanks,
Sleepless Sue

 

[suebehar]

Hi Sue,
I so relate to your post. Getting a proper diagnosis is such a relief. My doctor added Lunesta (to help me sleep) and Zoloft for my depression. Most people with chronic illnesses do suffer with some form of depression. I also think the prednisohn may be causing you the "ripping" episodes. Do discuss all your symptoms with your doctor. Once all your symptoms are addressed, you will begin to feel much better.

Take care,

Susan

 

[pollianna]

Aww, Sue, I know just how you feel. I am going through the same stuff and I haven't even gotten the meds yet I can't seem to get to bed. I work 12 hrs a day and it's 2am here in the UK. I too am depressed, I'm all alone with this. Think you might be on to something with the winter idea. It's seemingly never ending. It's so hard to deal with the thought of having this illness forever. We could do ourselves in but that would mean we have gone through all this for nothing . I reckon I have been ill with Lupus for 10yrs. Do Pm me anytime, ride the storm

Pauline xx

 

[Sleepless Sue]

Thanks!

Hi...
Thanks for responding! I'm not really savvy with this computer internet thing. I don't know what a PM is :blush:! I finally got to sleep around midnight & woke up around 4. Fed the cat, made coffee, turned this thing on & here I am...AGAIN! It's quarter to 5 in the morning. I thought people like us were supposed to be tired and wanting to sleep all the time. That's what the doc told me. I've told him all my symptoms. I've been telling him all my symptoms. The problem is (I think), is that I have crumby insurance. It's county insurance and it's not very good. I think that's why none of this has been caught til now. Heck!! I can't even get a proper yearly exam from the guy!! This is my 4th doc since all this started. Not including the rheumy. They all figured I was a real pain (pun intended!), until the rash started. Then it took a year of dealing with that before I had to lie and say I thought I had skin cancer. I was finally sent to a dermotologist and he's the one that caught the lupus. I don't even mind that this is a life-long illness. I've had epilepsy since birth & 3 bouts of cancer. They told me I'd have cancer cells in the ol' bod forever. It's been at bay for almost 25 years now. So, dealing with something "forever" isn't really a big deal. It's adjusting to it so that I can have a decent quality-of-life that's the real pain in the butt!! Here in the states, if you've got good insurance, your odds are a whole lot better. Good insurance means good QOL! Cruddy insurance usually means you flail like a fish!
Susan, you said you were on Lunesta. Doesn't that make you feel tired during the day? I'm so afraid that taking something like that is going to make my days worse because I'm going to be dragging?!?! I need every ounce of energy I can get...I'm a housekeeper with sometimes 2 houses a day to clean! By the way, what are "ripping episodes"?
Pollianna...BOY, do I get the "never ending" thing!! I can't wait til spring!! I've had to buy big floppy hats for the sun, but I don't care. I LOVE to be outside & this winter has been hard. Seems like the older I get, the harder they get! There are times I look at the clock knowing it's time for bed & it's only 6!!! Oh, yeah... supper time!
Thanks for "listening" guys. Sorry I write so much but it's kind of a good way to get some of this out!
Hope to "see" you soon!
Sue

 

[x_claire_x]

just a thought.

Hi, I have struggled with sleepless episodes for years.. for a variety of reasons..before being diagnosed with MCTD in Nov 08; my rheumy has put me on amitriptyline low dose to help the body not feel so much pain and therefore sleep, its side effect is it makes you sleepy... I am only on 10mgs, with an option to go to 30mgs;it can be used as an antidepressant but at a much higher dose (think it starts at 75mgs ish). it takes a while to work but I am sleeping better and not needing the odd sleeping tablet that I was taking when desperate. Also, there are no electronic items in the bedroom, the bedroom is very dark and quiet. I try and potter for a while before going to bed, not go direct from book or TV to unwind my busy brain! I get up at the same time every morning even if I could just stay there all warm...
I also use a lovely 'sleep mist' from Molton Brown which I spray on my pillowcase... ummm, think that helps at bit too. Sleep deprivation is dreadful and makes you feel awful as you know, so I hope you find something that helps... good luck.. my sister is an insomniac too and found cognitive therapy quite helpful..... just a thought!

XClaire

 

[Joandublin]

Hi Sue

Welcome to the Forum.

Im sorry to hear you have so much trouble sleeping. Its never a good idea to continually have poor sleep. It makes everything else so difficult. It can cause aching muscles and depression as well as a host of other problems.

I have difficulty sleeping and eventually decided to take a herbal remedy which does help get me off for a few hours at least. I also work during the day so getting some sleep is critical for me too. I know you are in the USA so the product I use might not be available but anyway, its called Kalms Sleep. If you are going to try something like that to help you sleep make sure you find out if it can be safely taken with your medications.

As for the fatigue - Im sorry but I dont have any wise words to help with this. Its my biggest problem - the lack of energy and the feeling like I could just lay down on the nearest floor from time to time.:worried:

The only thing I can suggest is to try and schedule your day so that you can build in a nap. I usually get home from work by about 6.00pm and before 7pm I have crashed on the sofa - sometimes for an hour or two and sometimes longer Actually its the best sleep I get most days!

Having a diagnosis of Lupus does mean a reassessment of your life and that might have to include work. I completely understand the need to work for financial reasons because I live on my own and depend entirely on my income. If there are any readjustments you can make that will give you some rest time then I would definitely consider them if I were you.

You mentioned you didnt know what PM is. Thats a short form for Private Message. Every member can send a private message to another member. Simply find any post from that member and click on their name. A drop down arrow will appear with a few options - one being 'Send Private Message'. Select that and it brings you into another screen where you can type your message. These messages can only be viewed by you and the member in question. Hope that helps. If you have any trouble, post here again and I will help.

Nice to meet you and I look forward to getting to know you
Joan:rose:

 

[LolaLola]

Hello Sue,
You have a lot to adjust to. It has taken quite a while for you to get properly diagnosed and as you say you don't have the luxury of good insurance.
From what I can see, you Girls in the US seem to have a hard time generally with Insurance, long trips to Hospitals etc.

Like you I have had nights where I am on the computer a lot. Reading is also good but my hands tire out holding a book.

Do try the Chat Room here, everyone is friendly. Maybe like me, your typing speed won't be good to start with . When I try to rush I end up accidentally typing in Capitals! You will soon get into the swing of things. To have been through so much with Cancer you are obviously a resourceful person.
x Lola

 

[Pink Pearl]

Hi Sue, and welcome to the board.

I've dealth with various forms of lupus for the last 20 years. For insomnia I have found it often is connected to whether your joints and muscles are getting relaxed enough to let you sleep. If you find yourself with sore spots after a few minutes in bed, and you toss trying to find a soft comfortable spot, you may be also dealing with other "hangers-on" conditions. I find I need 4" of foam pads to relieve the trigger points of fibromyalgia. Without the soft suspension, I am so sore I cannot sleep. I use 3 eggcrate pads and 1 memory foam pad = 4".

You also mentioned you are often cold. Has your doctor tested you for raynaud's? It affects the dilation and contraction of blood vessels in hands and feet. If your hands turn blue, or bright red, talk to your rheumy about it. If this is a problem, you may need to think about wearing sleep socks &/or cotton gloves to bed to keep your feet and hands warm, using either flannel or fleece sheets to up the temp in your bed. I have always slept "cold" and so my bed always had a lot of blankets on it. Getting the fleece sheets last fall made a HUGE difference in the warmth of my bed this winter. Only a couple nights have I had to add on an extra blanket! This is unheard of for me!

Another poster brought up amitriptyline....... One of the parts of fibromyalgia is that the junction of tendon and bone does not relax properly so your body is in a constant state of tension. By using tricyclic antidepressants, this junction relaxes and you are able to get an adequate night's sleep. Again, this needs to be discussed with your rheumy. I also take amitriptyline.....without it I am so sore that I cannot hardly move.

At various points along the way, I have also used soft sounds to fall asleep. Without them, I just could not shut my brain down enough to sleep. So, I am pragmatic here, if it works, then superb.....if not, then why bother?

One of the things which often helps new lupus patients is to keep a symptom journal. Then, at your doctor appt, take this with you and review it with your rheumy. If he doesn't know it is going on, he can't help you. I also have to add that if you don't feel comfortable with your doctor, then consider interviewing one with whom you are comfortable. No one doctor has all the answers. They are human first, doctors second. If you are not hitting a personal match...... I had to go thru 3 other rheumy's before I finally settled on #4. I have also been with this doctor for over 15 years.

It can take time to get your medications "right" to let you live as comfortably as possible. The variety of meds available may take adjusting until it works for you. If your doctor is dismissing you, then you need to be assertive and make decisions as if that doctor is your best chance at living a full life with lupus.

I say that there is life in, with, and thru lupus. Meaning that with the quality of care available now, there are ways to keep you going as much as possible. You need to take care of yourself and NOT abuse your good luck. If you burn the candle at both ends and in the middle and run out of wax, you have only yourself to blame.

At points along my journey with sle, I have just crossed off every other day on my calendar. I did NOTHING outside the home on those days. It was the only way I found to take the best care of myself I could. You may have to do something like that, or another way which works for you. I also judged my day by how many naps I needed before noon. If it was a 3 nap morning, then I knew it was not a day I could do much else. The only way to find the balance, is to experiment. And, sorry to say, that takes learning.

Hopefully you will be able to take some bits from my experiences which will help you a bit.
The moderators on this board are superb and have a HIGH knowledge and experience of dealing with lupus. The other posters here have hints to share as well. Take care of yourself.
Sally

 

[Ticker]

I wish I could help you but I have problems sleeping too.

I am not depressed at all but I have fibromyaliga and Sjogren's although they aren't giving me much trouble right now. I take medicine for the fibro but they have me on so many, I can't remember which one helps it.
Good Luck

 

[Sleepless Sue]

WAAAHOOOOOO!!!! I slept last night!!!! Straight through!! Thanks everbody!!
I called my doc yesterday morning after my 4th sleepless night and reading what all you guys wrote. Even though I didn't want a "drug", I was desperate enough to go pick up some samples of Lunesta as suggested by another Sue. It's a very low dose of only 2ml. I seriously didn't think it would do much. I took it around quarter to nine last night & was passed out cold by 10 after nine!! My guy let me sleep on the couch until around 11 when he got me off & into bed. I don't remember a thing after that until FIVE this morning!!!!!!! Double WAHOO...I feel GREAT this morning!!!:bigsmile: Ticker...you may want to give it a try for a night or two!
This site is such a life-saver...at least for me! I don't think very well when I'm in the middle of a flare-up & I realized this morning that the sleep deprivation slammed me into one! (At least, I think it was the lack of sleep) I'm beginning to understand the importance of why we need to sleep & rest as often as we do. Even though I was diagnosed back in September of last year, I'm still trying to get the hang of this disease. Good thing I love a good challenge!! I also had to up the dose of the pred from 5ml to 10ml again. Yeah...with the docs consent. On my last visit, he gave me the go ahead to try to wean down to 5ml. He also told me that with the degree of pain I experience, I may have to be on 10ml for quite a while if not permanently. This was my 3rd attempt for 5ml &, once again, the bus found me. I'll try to wean down again, but not until I get this sleepless thing under control. I think then, I'll be able to determine whether the flare-up was caused by lack of sleep or the decrease in the pred.
Thanks again guys!!!
Slept-Well Sue:lol:

 

[suebehar]

Hi Sue, Lunesta does not make me drowsy the following day. I take it right before bed, and it really knocks you out. I'm out for 7 hours and wake up alert. It has really helped me.

The "ripped" was in reference to your statement that you were "ripping into people." An anitdepressant will help in moderating any mood swings, which is so common when you are in constant pain and have extreme fatique.

 

[Ticker]

That is very good news today. I will wait to see if you stay awake all day now.:wink2: Seriously, I doubt my family doc would be brave enough to prescribe any thing for me because she is a new doctor that is afraid to make a mistake. We are very short of family doctors out here in the country.

However I will ask my Rheumy when I see him. I don't want to sleep as much as you did though. I wonder if anyone has any herbal teas or something milder like that, that I could try?

Best wishes, Tinker

 

[onetay]

Hi Sue,
Welcome to the site. I am sorry to hear that thing were so bad for you that you thought of death over help. You should be seeing a specialist like a rhuemy or dermy for the lupus. I am glad that you have the pain under control finally. You have a place to reach out to when you are not feeling sleeping. Yes, it is common to sleep a little and get up ( feeling very tired ), then sleep some more and get up only a little while later ( still feeling very tired ). Many don't understand this about lupus, but lupies do lol. There are some meds the doctors can try if you ask them. I do understand everything you were talking about. It also sounds like an anti-depressant would help you also. You can ask any one of your doctors for help with that. It seems most of us in here are on them lol. I hope you will join us in the chat room sometime.

 

[Sleepless Sue]

Good Morning, Everybody!

Last night I elected not to take a Lunesta. Mistake. I was up & down all night until 3 when I finally gave in & got up. I can't believe how well I sleep when I do take it & how I DON'T sleep, when I decide not to. Also, I experienced NO sleepy or groggy side-effects on the days after I did take it. I got a bit gittery yesterday (which is why I decided not to take it last night), but that may be because I felt so energized that I may have done just a bit too much. I wonder if I'll ever be able to sleep through the night, on my own, without the aid of a sleeping pill. I've been cruising around this site & it looks like sleeping problems go hand-in-hand with our lupus. I'm thinking I'll take one again tonight & then tomorrow night, I may try an herbal sleep aid. I'll you all know how that turns out.

Take Care...
Sue

 

[Sleepless Sue]

If anyone is interested in a little early morning chat on occasion, just let me know! I'm usually up between 3 & 4 a.m. & wouldn't mind a little one-on-one!
Later...
Sue

 

[Angel333]

Hi Sue

Hey sweetie!

Boy do I understand! Your post really touched me and I think is was really brave of you to say what you did....I can only speak for myself, but I would assume that many people here have felt the feelings that you feel.

I can address a few things. I know a lot about sleepless nights. Sometimes I just give up trying to sleep and get up. I may do something like lesson plan for my boys (I home school), read a book, or just sit there and stare at the TV and listen to my hubby snore :hehe: I have been on many meds for the insomnia and the only thing that ever worked for me longer than 4 hours at a time was Roserem (sp) but at 350.00 for a 30 day supply (no generic and I had no insurance) that relief lasted as long as the samples the Dr. gave me. So I still suffer from the insomnia....sometimes due to pain, sometimes "just because".

The fatigue I experience is one of my absolute biggest and most maddening problems Now my Dr just started me on something called Provigil, BUT if I am in a bad flare, it does nothing for my fatigue.

So, I don't really have any suggestions to relieve your problems, but I can assure you that you are NOT ALONE! Girl, you have a kindred spirit in me

I sincerely hope that you can find some relief....this disease (and the different symptoms that can REALLY get us down) is frustrating and, for me at least, changes from one day to the next.

BIG HUGS TO YOU! I hope someone here has some help for your symptoms. I hope that this post provides a small shred of moral support

 

[Ticker]

I'm happy to see you are doing better now and I wanted to thank you for your note to me. I don't know how to send one back so this is the best I can do.
Take care,
Tinker

 

[ROSJAC]

Hi, In reference to your feeling so very cold: 12 years ago I was diagnosed with Raynaud's before Lupus. It affects my hands and feet. The cold causes my blood vessels to constrict and my hands turn dark blue. My doctors say I have a classic case and have asked me if I would allow others to observe my Raynauds, to become familiar with how it looks. The month of January has been bitter cold here in Illinois. The only time I left my home was for appointments. Many times in order for a blood sample to be taken from me, the nurse must place a warm towel on my arm to bring my veins up. When I reach into a freezer or I am in air conditioning my hands turn blue. I was recently told by my Cardiolgist, this also affects the vessels around my heart. I have lived with a great deal of stress in my life...stress is a Lupies worst enemy. I think we all have problems sleeping due to pain and racing thoughts. Muscle relaxers help me. I have arthritis in my neck and spine and Lupus in my lungs. Just take each day as it comes and on very bad days, pray the next will be better.. Take care, Rose