[sadieone]

Hello Everyone,

I have a concern i would like to share with you all and hopefully, with you being on the outside looking in, you can give me a different perspective of what I see.

I feel like i have been sleeping way too much. I literally get sleepy after doing the smallest of chores some days.. like washing the dishes.

I have gone through a change in meds for my fibro, but it just kept me sleepy. I have been off those meds for a few weeks now.

When i do sleep (nap) i am told i snore loud and hard like i'm exhausted and i sleep from 2 -5 hrs most days.

I go to bed around 12 or 1am and wake up 9am. I can drink a cup or 2 of coffee and by 11am i'm sleepy again. I'll lay down and next thing i know its 2 or 3pm.

The only meds i take that can make me sleepy now is the amytriptaline, at its smallest dose and i take it at night and i sleep well at night. Its just the day time I worry about. I'm worried because it feels like a depression.. I don't really want to get out of my temperpedic bed, I just want to stay there. Im not interested in getting up to shower or eat and if I could get someone else to go to the bathroom for me i would. I have things to do but i just don't want to do them,, my dog has to fuss at me to get me up.

My last doctors visit upset me because he fussed at me about losing more weight. He said its not the air that is causing my weight and that it comes from somthing i do.

It upset me because i worked very hard to be able to maintain my weight for a year. And i told him all of this. I walked on the treadmill,, bought a recumbant bike so when my back hurts i can still exercise. And here he is saying, its not good enough. He has no idea what it feels like to have fibromyalgia,lupus and 2 slipped disks in my lower back while walking on a treadmill for an hour every day,, or how to deal with the aftermath. I had to drug myself beyond belief to exercise. I literally ate one meal a day,the rest was a piece of fruit her,, lots of water and sugar free gum.

I was so upset i have stopped working out.

I'm beginning to like staying home by myself, so when my husband is traveling for work i'm releived. No lunches to make or dinners to prepare.
I also don't like leaving the house,, i don't want to see my nosey neighbors and be talked to death about nothing. I get my mail after dark. I'm starting to live without certain things because i don't want to go out to the store to get things.

I usually travel with my husband when he drives to nearby states for business, so i can enjoy room service and the indoor pool by myself most times. But i don't really want to go these days.

My memory has been terrible as well,, hubby wrote out a list of his itnerary for business travel and things I needed to do while he was away, like pick up his dry cleaning. The list sat on the kitchen table big as day with yellow and pink highlights and arrows all over it so i could see it and won't forget.

I forgot to look at the list. I had to get up 6am to pick up his clothes the day of his travel so he would have somethng to wear for the next week.

I don't know if this is depression,, laziness,,, defiance or a different type of flare, i have never experienced before..

From what i have written i'm hoping someone can relate and give me some ideas of what to do about it.

Thanks again,

 

[ALWIN]

:hug: :hug: :hug:

Hello Sadie

I am sorry you are feeling so low. I cannot offer you a different perspective, Sadie. You said it 'feels like depression'. My perspective is that it sounds like depression too, but i am far from a good 'judge'. But you have my sympathy. I do hope there is another explaination because depression is a terrible and lonely old thing.

I think you really do need to see your doctor again. Since he upset you so badly last time you visited by focussing on your weight I suggest, if there is not anybody you could confide in and take with you to the appointment, do so. You could also jot a few things down that you can hand over if you find it difficult to talk to your doctor. A good friend might help set the ball rolling by introducing your current problems and gently pointing out that today you are not here to discuss your weight directly as it is too painful right now.

If your doctor has any sense s/he will realise that your weight is not your primary concern, but linked to other important issues such as your quality of life and mental health - which clearly need some TLC. The rest can come later.

Who can lose weight and exercise when they are unhappy, unwell, and probably actually not really eating enough? Our bodies go into fat storing mode if we don't put enough food into them. Then we get tired and move less. If we get dpressed as well we slow down even more, and before we know we it fail to care very much.

It sounds like you have gradually stopped doing more and more things and are beginning to isolate yourself. But you have very clearly described a variety of logical reasons for it. It seems to me you know yourself well, have legitimate concerns, and you know you are probably at the point where you need a bit of help to prevent yourself from deteriorating further.

All I can say is that if I have read your post correctly, I think you are quite right. I think you should be gentle with yourself - BIN the 'lazy' word for starters, and try to take your courage in your hands and get yourself to your doctor.

If it helps, and it probably won't Sadie, I too am trying to decide if I am in the same position re depression. I am taking each day as it comes right now in the hope that things will seem better in the morning. However, a little trip to the doctor is probably on the cards for me too. I have a very healthy fear of depression having experienced it many years ago. I promised myself i would never get so low i could not clamber back over the precipice again.

I think it is to do with our illnesses, but I see no reason to suffer in silence. If you have any worries you might not be able to drag yourself up, do get help - sooner rather than later.

If you don't feel any better very soon, please go and let us know how you get on.

With my love and hugs. You take really good care now.

 

[Maia]

I think it's depression, at least it really sounds like it. I'm worried about how much you are isolating yourself from people in particular, and how you have lost interest and no longer want to do the things you once enjoyed like traveling with your husband. Sleeping all the time can be in part due to a flare but is also commonly due to depression.

If you think it may be depression, then it probably is. I really hope you will seek help for it, even if you have to bypass that GP. There are some physical reasons for this conglomeration of symptoms too - most notably low thyroid functioning but I'm guessing this has been tested for already?

It makes me downright mad how that GP treated you about your weight... I am of normal weight but I have reached the point where I won't get on the scales routinely anymore because of comments from doctors/nurses about weight! It's annoying at best, and very hurtful at it's worst. You just keep working on it, and take pride in your efforts.

Best wishes for you and I hope you seek out some care for possible depression. Let an expert help you

 

[confused1]

((((((( Sadie ))))))))

Girl, you sound genuinely depressed. And your doctor sounds like he isn't listening very well. Please go back to him, or to some other doctor with better listening skills, and talk about being depressed to the point that you don't want to get out of bed. That's serious.

And, I wonder if you aren't flaring a good bit..... the physical stuff you describe is what I feel when I'm flaring. Although I don't want to hibernate in the house, sometimes I have no choice because of low energy and feeling truly horrid. Perhaps your lupus is acting up, throwing you into a depression (which can be a symptom of the disease itself), or the depression is exacerbating your lupus.

Either way, you really need to see someone soon and get on some medication for depression. I know how hard that feels, but the sooner you act the better.

Keep us posted. You have lots of people here pulling for you, caring about how you feel and how you're doing.

Hugs,
Sunny

 

[JoD]

another thing

Others have spoken about depression and have given you good advice. I was struck by your statement of the exhaustion, falling asleep in the middle of the day and snoring. Have you been checked for sleep apnea. It makes losing weight harder. It also leaves you unrested after a " good " nights sleep.
http://www.stanford.edu/~dement/apnea.html
Joanne

 

[sjink]

Dear Sadie

I agree with everyone else, you have most likely slipped into depression. It can take you unawares, it did me recently. I recognise the sleepiness, lack of energy and lack of interest in myself. It is everyone here that encouraged me to go to the doc and sort out some help.

It could also be fatigue, I sleep for England when the fatigue is bad.

I am waiting for appointments and meanwhile have that memory problem you describe, an irresistible urge to be in bed etc. etc. I have also put on weight because i have been too tired and too miserable to do any exercise. I am flaring as well. For myself I believe a flare can trigger depression, partly because it is so awful coping with the additional symptoms and partly because it tends to go for my central nervous system. I have found that now I am accepting thta I am depressed I can cope a bit better and am sure once they sort out meds that I will be better still. This list has been such a support, everyone so kind.

Can you see a nurse at the GP practice, or ask for a counselling referral. Some GPs just don't understand how lupus affects a person and are less than empathetic. Is there another doctor at the practice you could see. Your docs comment about "air" was less than kind I think. Alwin has made some great comments on weight gain.

Hope you are feeling a little better today.
Hugs
Sara

 

[chilli]

Sadie, i too have similar things going on and depression has been diagnosed. i thnk that a certain amount of tiredness is to be expected..for me, alongside pain i have a great deal of tired ness with my lupus. some days it is easier other days i can just about manage to get out of bed.

its not about being lazy if you dont have the energy and overdoing it only makes things worse. your dr is very rude and if you can would mention to him that you would rather he keep his snide comments to himself (or am i being beligerent here!!!!). it doesnt help and only serves to make you feel worse about yourself.

so perhaps you will need to readjust your meds????? i see that you are taking amytriptaline.....i was given this to help me sleep and it is also an antidepressant and works on nerve pain too. however, in order for this to be effective as an anti-d you need to being taking a very high dose, so maybe you should discuss this with your doctor.

take care sadie x

 

[BigSis]

Hi Sadie,
You have had some good, supportive advice here and I would just like to agree that depression seems likely .

You obviously need more help than your rude GP has offered so far. Perhaps someone can go to your appointment with you to fend off his unhelpful remarks!

I do think a woman's weight is an easy target and usually garenteed to shut us up.
When I was very frightened by the amount of weight I was losing with a flare, my (now ex) GP said 'well you could do with losing some'
not relevent and not helpful

 

[sadieone]

Thank you ALL, SO MUCH for your replies.

I didn't know what to make of how i was feeling. I know i'm in a flare because my back is killing me. But the other symptoms i wasn't sure about.

oh yeah, this was my rhuemy who did this, old enough to be my son. I will put him in time out nexttime i see him. my GP is a nice man.

I have been depressed years ago after my mom and dad died and i divorced my x and left my job of 15 yrs. all in the same year. It was a terrible time. I wasn't diagnosed then but i believe all of that set Lupus and fibro into action. Then, I knew I was depressed and worked through it without medication.

Now, i have so many variables that its hard to put things in its place.. That is why i love this site. I can seek help from those in my shoes to guide me.

I believe everyone here is right. For awhile i thought my feeling down might have been due to me being in a flare again from my daughters accident. But then i realized i was depressed before all of that happened. I remember how i bought all of my comfort foods a couple of weeks ago, thinking, these are the things i need when i go into hybernation.
Potato chips 2 bags, i made 2 loafs of banana bread, almost bought ice cream but remember i have lactose intolerance and IBS. My daughter and husband helped me eat the banana bread but i took care of the potatoe chips myself,, i'm on bag #2 now. I torcher myself by eating blue cheese ( i love bc) with my buffalo wings and end up living in the bathroom the next day.

Also, I knew something was wrong when i got upset with my husband and snaped at him because he wanted me to do something. I never snap at my sweetie. I just wanted him to leave me alone, i do too much as is and i'm tired. I just wanted to say; cant you see i'm sick and tired? just leave me be. He looked at me funny, like what is wrong? but didn't say anything. As long as i'm smiling he will think everything is ok. He will just keep going as usual until whatever is bothering blows over.

JoD you are so right. I have an appt. with him the end of this month. Whether he talks about my weight up or not i'm going to tell him just this.......

From now on Dr. S,, i would appreciate it if you NEVER talk about my weight again. The last time i was in your office i felt terrible about the things you were saying, as if i was doing nothing to control my weight. You never ask me what i do to help control my weight. otherwise i wuld have told you i have to take a muscle relaxant and 2 tramadols to be able to walk on the treadmill at its lowest speed for 15mins every day. Then i suffer with fibro pain afterwards and sleep like i hadn't slept in weeks. I eat one meal a day and spend my life savings on fresh fruits and veggies to eat and deprive myself of the things i like to eat. Since my last visit with you i have been feeling very depressed. I stopped working out,, started eating comfort foods, slept 17hr a day and snap at the ones i love. If it wasn't for my online support group i don't know where i would be now. So i think it would be better if you and I never mention my weight again. Thank You.

I still feel bad :lol:. But its a good bad.

Someone mentioned an increase in my anti depressants to help with depression. I think you may be right,, cause it is getting harder to get out of the funk that i am in. There are not support groups for lupus out here where i am. People here either think your dieing if you have lupus or they treat you like you have a pimple to complain about.

I don't want to stop trying to feel better but it seems like it is getting harder and frankly whats the point.

I know i shouldn't be saying that , but if i can't be honest with you all here than i'll keep it all to myself.
I think i will have to talk to my GP more about this. Because right now I can't trust my rheumy with my feelings,, he is too busy trying to meet his patient quota for the month.

I'll just see what my rhuemy says after i give him my weigh control speech.

THANKS AGAIN EVERYONE.

XOXOXOXOXOXOXOXOX

 

[peonyprincess]

Sadie,

Sorry to hear that you are feeling so crummy. I have read the other replies and while they all pretty much think depression could be the culprit, and it very well could, I want to throw another thought into the ring. Have you had your lungs and oxygen levels checked lately. You state that you are tired, you snore, etc. I was also having difficulties and when I went to my Rheumy appt. he decided to run some stat ABG's and had me immediately go to ER. My oxygen level in my body was just over 50%, a far cry from 100%. I was admitted to the hospital and now I am home on 4L oxygen and have never felt better. I still have my moments from time to time but overall, I feel like a million bucks. The thing is, I probably would have thought flare, an infection, or something. Docs do not order ABG's routinely. I don't mean to alarm you, but just to give you another place to look, just in case your doc would rule out flare or whatever. I would not want him to say well, "it is all part of it."


Goodluck,
Nancy

 

[sadieone]

Hi Nancy,

My Rhuemy would think it is all relative to lupus.

I will bring this up to my GP, he is more open minded about things such as that.

I do have COPD, and i haven't been taking my spiriva lately. Though every morning i cough up what taste like (and i don't mean to be gross) cold mucus, it is white. I don't consider it to be anything significant, because it is not a constant cough or congestion problem.

Since i have been going through that i think your advice should be considered.

I'll keep you updated with doctor results.

Thanks again,

 

[cath]

Hi Sadie,

The others have given you good advice, so I won't repeat it, and you have also shown a great deal of insight into your own situation. Recognising it is half the battle:blush:.

I was given these instructions a few years ago. Their simplicity but usefulness in terms of quality of life have been very useful to me.

Every day make sure that you:

Go outside
Do something active
Do something social/see and talk to someone
Do something you feel like doing.

How much is up to you, so even if you walk 100m to the local store, chat to the grocer as you buy yourself a treat and are back again in 10 minutes, you have done something towards maintaning your sense of wellbeing.

All the very best, and here's to better days:wink2:

X C X

 

[Katharine]

Hi there,

I haven't replied before but wanted to send loads of hugs :hug:

Even though I have been pretty lucky with depression, only suffering from occasional low points which I seem to work through, I can relate to some of what you're saying.

Everyone has given far better advice than I could possibly have done.

For my part I found that being "obliged" to participate in activities has been a huge help. I used to be very involved in the aikido club (as I was the president) and only gave that up after several months of teaching aikido when I could hardly walk! Thankfully I also have a young dog who is quite a personality and I have now got into training him. In the beginning I just went to the lesson and went home. I said hello if people said hello to me but not much else (it's not depression with me but extreme shyness - that's why I can relate to some of it, there are some similarities). Gradually, as I became more interested in something that I could actually do physically, I also learnt to know people etc. Even when I'm tired I force myself out, I tell myself the dog "needs" his training (though maybe I need it more).

All that to say that I agree with Cath's simple formula. Little goals that get you out there and once you are, you'll forget you didn't want to.

hugs :hug:
Katharine

 

[sadieone]

Cath,

Every day make sure that you:

Go outside
Do something active
Do something social/see and talk to someone
Do something you feel like doing.

You made me think on that one. I haven't done enough for myself lately. Its summer time and i don't own one summer dress. I guess i feel that since i don't go out of m.y home to work like my husband does, i should be the last one to get anything.

I forget how much work i do to keep the roof over his head (paying bills)and keep him fat and happy in a clean house.

I think it is time to give myself a break.

Lately, i have been thinking of going to the mall 30mins away from my home and just walking every day around the mall. It makes me go out no matter what the weather is and i get my excersize at the same time. I like the mall because they have my favorite pizza slice with extra tomato sauce and a great place to get my frozen yogurt drink, but don't worry, i'm not going there to get fatter. Not to mention all the great stores that i haven't been in since christmas.

Here is my plan. Every day i'll drive out to the mall and walk around the whole mall at least one time, both levels. That should take me about 30mins. I'll bring my cane and if i get tired, i'll take a seat at a bench. I don't have to worry about the weather as i'll be inside. I'll treat myself everyday to something whether its the yogurt drink or a new summer dress or a pair of earring or a piece of gum from the gum ball machine.

I don't like shopping really because in the past i could never get anything for myself just for the kids. They are gone, all grown up,, its just me and the hubby,, and while my youngest works at JC Penneys, i can get good discounts before she goes back to school.

I'm sure i'll meet shop people or people who are doing the same as I am.. I just hate when you run into crazy folk that look normal or guys that want to pick you up even though they see the rock on your hand. They just ruin my day.

So that's the plan.

Katharine,, i'm very shy as well. Most times i say hi to men they think i want to chat. It discusts me more when they see the rock on my finger and still think they can win me over. Most women don't conversate, they look like they are on a mission. So i stay to myself. The only people i really talk to are the ones in my church,, and i mainly chat with them in church only.

I love going to church to see all of my loved one's.. Lots of hugs and kisses and people genuinely concerned about you. I'll have to try and make womans bible study class more often. We relate our lives to the material we are reading at the time. Its more of a vent session.

I went to church today and left feeling BETTER. I told my husband what was on my mind, after he asked me what was wrong because, i got up and ready for church long before he did. That NEVER happened before.
After expressing my feelings about the what the doctor said,, though i don't think he wasn't in agreement with me,, but he was smart to keep his opinion to himself, I felt better.

There is still a lot of work that needs to be done. After church i took a nap and didn't want to get out of bed again,, it was 6:25pm and i had a headache still do and was contemplating taking a pain killer and downing it with the water i had on my side table when, my dogs came to rescue me.

My american bull dog mix(chakka) knows how to say MA. She'll stand at the side of the bed and won't stop saying it until i ask her what she wants. Each time she says it, its with more and more emotion. When i ask her what she wants then she jumps on the bed, which make my bullmastiff(shaq) jump on the bed and they both try to kiss me. Sloppy wet kiss from 80+ pound dogs walking all over you leaving you no room on the bed, will make anyone get up. They know when i'm down or sick and know what to do to help me feel better or just go on with life.

I would love to be able to walk them more, since we have a nice huge park down the street from me. But the minute i get them out of the door they think they have to run a race.

Katharine, I need you to come train these animals... Shaq had formal training classes,, but when i got sick we didn't have enough chances for him to use his newly learned skills, so that was a waste of money. Chakka is good but very subborn and heavy. The 2 of them overpower me before we get out of the door. Though there is a 1/2 acre of fenced in backyard for them to run around in every day all day, I still would like to walk them at times. My oldest daughter who is the animal control police officer, comes occasionally and takes them for a long walk in the park. I get jealous because they are enjoying the outdoors. Last time i went,, it put my back out and put me in a flare for 2 weeks. She had the dogs,, i just walked. She also takes them to the vet for me when scheduled. I can't risk it, one tug and my back is out for a while.

So far you all have given me some great advise. I'll try and adhere to it. Just don't go to far,, i may needs some more ideas or some coaxing.


YOU ALL ARE WONDERFUL AND I THANK YOU FOR ALL YOUR HELP ONCE AGAIN.
XOXOXOXOXOXOXOX

 

[KarolH]

Sadie,

I agree with the others and I do think this is depression. Of course there are drugs to treat this but maybe counseling would help too. It really concerns me that you are isolating yourself from people around you.

That being said it also sounds like you may have sleep apnea as I do and may need a sleep study done. My study showed severe obstructive sleep apnea and so the CPAP machine was introduced to me.

The machine did not work for me and it went back to the company it came from yet most people who use it really truly benefit from it.

Also, I take Provigil for fatigue and it really helps me get through the day. Maybe you should talk to your GP about meds for fatigue.

Last but not least................you Rheumy doctor needs a good swift kick in the a**!!! I am in New Jersey and would be more then happy to come down and do it for you....................what a IDIOT!!!

Please find yourself another Rheumatologist, one who wants to work with you and not against you. You do not need to put up with his BS.