[LAURINAJAY]

I WAS DIAGNOSED WITH LUPUS EARLY THIS YEAR.
ID ALREADY BEEN THROUGH A BAD TIME AND IT IT ME WORSE.
I CANT GET UP ONCE IM ASLEEP.
I GET WEIRD ACHES AND PAINS AND DONT KNOW IF THERE RELATED TO LUPUS.
I HAD STOMACH PAINS ON THE LEFT SIDE(LIKE A STITCH PAIN PULSING.THE DOCTER SED IT WAS THE EDGE OF MY SPLEEN AND SENT ME 4 A ULTRA SOUND N EVERYTHING WAS NORMAL..BUT I STILL GET THE PAIN.
I GET BLOATED SOMETIMES REALLY REALLY BAD AND HAVE THE WORSE PAINS IN MY STOMACH AND LOWER BACK.I ALSO GET PAINS AS IF I HAVE A WATER INFECTION.THE DOCTERS ARE CONSTANTLY GIVEN ME TABLETS THAT DONT DO ANYTHING.IM JUST GETTIN MORE DEPRESSED AS IT SEEMS LIKE IILL NEVER GET BETTER.. PLEASE CAN ANY ONE TELL ME IF THIS IS NORMAL OR NOT.
THANKS.XXXXXXXXX
HERES MY ADDY [email protected]

 

[cad]

Hi Laurin,
Welcome to the site.
I know someone else will be along soon who is much more knowledgable than me but i just wanted to say i am sorry that you are feeling so bad.
Which medications are you taking at the moment, are you on any pain meds?
I think a lot of people experience not feeling ok but test results coming back ok including myself, which can be very frustrating because that means that without a diagnosed problem we don't get treatment and the worry and sufferring goes on.

I hope things get better for you and its good that you have found thi site, there are so many wonderful people on here with lots of knowledge and experience of dealing with the disease and its related issues.

Take Care

Good Luck.

Cassie

 

[cath]

Hi Laurinda (did I get your name right?)

Welcome to the forum. I am sorryabout your lupus diagnosis and that you are not feeling well.

The issues you describe with your stomach and bloating sounds wuite like IBS. A lot of people with lupus get this. It is not caused by lupus per say, but it occurs more frequently that you'd expect from chance allone, so there is a link somewhere. Also, plaquenil can aggrivate these symptoms.

I find for myself the best tip is stress avoidance - if my tummy swells up the best thing is to go lie down and relax, otherwise it just gets worse. Also I avoid having anything tight on around my belly - so no tights or belts or skinny jeans etc, and lots of stretch fabrics and loose dresses.

A fibre rich diet helps too, as constipation will make it worse.

The joint pains are pretty much normal for lupus, but how bad they are and the total picture will influence what needs to be done. If you have bloods off, low compliment factors and other symptoms of active disease you may need to step up DMARDS - ie add another medication to your current regime. Your rheuatologist has to be the one to discuss this with you and to decide what to do.

What meds are you on?

I think most of us, even with a good medication level and fairly quiet disease activity have aches and pains. My own boundary as to what is acceptable and what is not is - how bad is the pain. I use a pain score from 0 (no pain) to 10 (worst possible). Anything from 4 and under I learn to live with.

The other thing to get your rheumy to test you for is fibromyalgia. This can be much more painful that lupus and happens quite often alongside lupus. It is worth knowing about it because sometimes medications (like to improve your sleep quality) help a lot.

You mention that you feel depressed. This is very commn with lupus, and you needn't feel ashamed of it - almost all of us know what you mean from personal experience. Sometimes it is the disease itself affecting the brain, othertimes it is from the stress pain and frustration of living with a chronic illness that is the trigger. Either way it is worth treating - getting counselling and or antidepressant medication.

For your next post, can you please not use all capitals. It is hard to read, and in computer language means shouting, which I'm sure you didn't intend it to.

Take care,

X C X

 

[sadieone]

Hi Laurinajay,

I agree with Cath. As you were describing the symptoms you have, it sounds like me on a bad IBS day or constipation.

A lot of the drugs we take process in our systems differently. The antidepressants i take now make me very constipated if I am not careful.

I must ensure to eat a high fiber diet and lots of water to keep my system flowing properly.

The day i discovered i had to have a high fiber diet was when i was constipated and had not have a "Movement' in a couples of days, when i normally have one every day and sometimes twice a day.

I was doubled over in pain one morning after eating oatmeal for breakfast. It decided to push everything i own through my system to pass right then an there.
A very uncomfortable hour,, i might add, included the feeling of a rock going through my left intestine. Nausea was another symptom. I guess my body was saying it was coming out one way or another.

Now i eat oatmeal and yogurt for breakfast with a tall glass of water and i'm good to go. If I feel it is especially difficult i'll add a little metamucil to my orange juice at lunch or just drink some prune juice.

Eat lots of salad, roughage and less junk or meat. Raw broccoli and carrots work wonders.

After that painful ordeal i have tons of remedies for constipation and bowel regulators.

I hope you find out what is going on with you soon.

Maybe a trip to an gastrologist (sp?) will help you find what is wrong

A nurse once told me, just because "that" doctor or those doctors could not find out whats wrong, doesn't mean there isn't anything wrong with you.. Keep searching and you will find it.

She was right.
I hope you do the same.

Take care

 

[LAURINAJAY]

Thank You

Hey every one thank you so much for your advice and oppinions.
They mean so much as my family and parents dont really think its true.
ive been told its all in my head.It started when the docter took a blood test and said something about my borderline and i have clots and should take asprin daily.
I have been given medication (apparently i had a womb infection then some thing about my fallopian tubes then they gave me 3 diff kinds of medication and all 3 said dont take if you suffer from (SLE) i was sick while taking them so i stopped)docters have foned me and sent letters sayen something about some other medication i was given being insufficient or afficient and i had already taken it.
This scares me as i am begining to not trust the docters advice.

I just feel like no one knows how it acutally is.
My family say its all in my head and because the docters cant help me im starting to think the same..
Just tell me.. does any one sometimes feel there alone and just wish you could show the exact feeling to people who dont suffer from it.
Just to show how we feel and how low you can actually get.

Ohhhh my :rotfl::rotfl: since finding this site i dont seem to shut up asking questions lol....
guess im a (L)earner.This is really silly to ask but has any one sufferd bed wetting because as a child i have really bad.docters said it was stress.But i still have bladder problems today.
I Spend Half Of My Time In The Toilet.
some times i get a nasty pain simalar to a water infection.
and the only place i feel i dont get it is if i sit on the toilet.
i cant help but to think im defo not normal.....
xxxxxxxxxxx
please tell me there is others out there feeling like this its a scary experience........

 

[Pickles]

Hugs to you,

Most of us have been there with everyone thinking its all in our heads. If people can't "see" something wrong, people believe that we're making it up or just want sympathy. I had a problem with people at work until I lost 70 pounds and then they said "what are you doing" or "what is wrong with you?" Of course, right after that I was diagnosed with Lupus and doc put me on prednisone and all the weight came back.

Just hang in there and find another doctor. I also have IBS with lupus and everything else. I have had that for over 20 years and I have always got to be near a bathroom. I get sick even when I don't eat anything. I have never had a problem with bedwetting but I do sometimes barely make it to the bathroom. Thankfully now, they have things that you can wear when you have these problems.

Are you tired all the time? One of my major problems is the fatigue, I never seem to get enough rest. I used to take a nap every day but I don't do that as much as I used to. I still have bad pain somedays and would love to lie down and go to sleep but the pain pills I take(Lortab, Darvocet, Percocet)I've tried all of these...keep me awake. NO, I don't take these all at the same time.

I know I went to several doctors before I got a diagnosis. My regular doc thought it was carpal tunnel syndrome cause at first my hands just hurt, then it went to Rheumatoid Arthritis then Lupus then Raynauds, then Scleroderma and Sjogrens and many more.

I hope you get your answers soon and hope the family and friends will start believing you and try to help you more. Heaven knows, we do not make this stuff up.

 

[LAURINAJAY]

Thank you.

Hey
Thank you for being so understanding.
And sorry guys about writing in colour.
lol and the caps..my eyes are really bad and it makes it easier for me to read in caps///(sorry)
Im new to this and i was jst tryen it out lol.
yeah i get tierd all the time but whats weirds is
this what you said::I used to take a nap every day but I don't do that as much as I used to. that is all i seem to be sayin these days.
This is exactly what i was like i used to feel hhorrid in the morning get up get a drink then go back to bed for hours get up get a snack and g back to bed.
and not matter where i was during the day i still felt tierd and need sleep.
i was put on anti-depressents and they made me get up early and feel better
.But not for long id be back to sleep after a few hours.
i cant beleave how much my sleeping pattern has changed.
Months ago i just stayed in bed and felt so low and depressed.
I thought i had cracked up because no one around me cared.
No one really seemed to notice.
But recently i have been getting up early and feeling good in the morning(im normally not a morning person ha ha)

Its really hard when no one beleaves you and you get sore and feel alone and it seems im getten newer symptoms every day....(well not every day but when i get a flare up)
I was researching and found that stress can start a flare up...
This is hard as i also suffer from depression and thyroid problems.
1 docter said it was under active.
Then anther said it was over active.
After many test we found out it was both.changing all the time.
Making me like a split person which i really dont enjoy.
As sometimes im a nasty person

 

[LolaLola]

Dear LaurinaJay,

You will soon learn how to hold your own with the Doctors. We have all had to learn!!! I am sorry your family do not believe you. Many people with Lupus or similar illnesses can look quite well, which does not help. Anyway, just wanted to say I am here if I can help at all.
x Lola

 

[LAURINAJAY]

Thanks...

Thank you for being so understanding..
It gets really hard when im ill and scared to go the docters.
But my docters a lovlery women and very nice and understanding.
I just feel they dont actually know how bad it is because they cant feel it.
And i defo cant explain how bad it can get.
But this site helps me feel better and makes me feel like i have some sort of control with my health because theres alot of understanding people out there...
xxxxxxxxxxxxxxx

THANKS.
XX