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May 7th, 2008


l_is_for_lupus
09:39 pm - Welcome!
L is for Lupus, an online directory of reviews and recommendations for patients by patients, has officially gone online today.

Bear in mind, this is just the beginning. This site will not be limited to just lupus-related material. I've begun to include Fibromyalgia books and websites to review, and I hope to include other auto-immune diseases as well.

I'm very excited to be ahead of schedule! Please help get this started and write some reviews! Your opinion will help others research their auto-immune disease. I hope to see you there!




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April 22nd, 2008


l_is_for_lupus
10:00 am - L is for Lupus - reviews+recommendations
Beginning May 15th, 2008, L is for Lupus will be an online directory of reviews and recommendations for lupus patients by lupus patients. An online community/bulletin board is also in the works.

L is for Lupus is currently seeking submissions for books and other items to review. We're not ready to accept actual reviews just yet--that will begin on May 15th. If there's something you would like to see reviewed on L is for Lupus, please let me know by posting below or send me an e-mail!






L is for Lupus on MySpace
L is for Lupus on Twitter
L is for Lupus on Facebook
L is for Lupus on LiveJournal




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March 8th, 2007


bluesuitcase
04:09 pm - Hello! Newbie.
I would like to start off by saying that I realize these communities to which I am cross-posting are not substitutes for actual medical advice. I have been to three different gastroenterologists and undergone routine testing, which have only added to my frustration. I am simply here to see if anyone else has shared any or all of my symptoms, and what has been done to cure them. Here goes...

For the past three or so years I have battled severe constipation. Throughout this time period I have been on endless dosages of ex-lax, Colace, Fiber-Sure, Metamucil, Fiber-Choice, and GlycoLax, sometimes all at the same time. Despite of these medications, frequent exercise, and a diet high in fiber and low in fat, the most regular I am is having a bowel movement every 6-9 days. When I finally do go to the bathroom, it is not like I am 'making up for lost time;' my stool is dark, hard, difficult to pass, and usually between the size of a grape and a ping-pong ball. I never feel relief, and I often have feelings of 'incompletion' after using the bathroom. There is often bright red streaks on the stool, and I have faint-but-bright pink marks on my toilet paper. There is never fecal residue on the toilet tissue.

I usually drink about 4 liters of water per day, intake 45 grams of fiber, and rarely have more than two servings of starches per day. I am a vegetarian, but I do not eat eggs or cheese. I love to exercise, except since whatever I eat just sits in my stomach, it's so difficult to get the physical energy to become active. Regardless, I walk 30 minutes a day, but am no longer able to do aerobic exercise. My stomach is constantly EXTREMELY bloated, and I feel it literally weighing me down --- my legs are constantly achy and I have constant cramps.

It's getting to the point where it is painful to urinate. When I go to the bathroom [every 7 days or so] it's usually because I am so fed up so I resort to an enema. However, I can retain the liquid for over 30 minutes [the doctors told me to keep it in as long as possible] and I really have to strain and use my pelvic muscles just to expel the liquid. I wake up every morning to severe nausea, and have landed myself in a Catch-22. I feel extremely hungry, and my stomach hurts, so I eat. When I eat, I become extremely full very quickly, and I feel lots of bloated-ness and stomach pain.

I'm mostly just tired of not knowing what is wrong. If it helps to know this, I have major depression but am not on medication since my psychologist is super-Freudian. I was recently put on Zelnorm, and my GlycoLax prescription has been doubled. But, it's only my fourth day on these medications, so I have yet to experience relief or have a bowel movement.

I recently went to the ER because my weight had increased over 10 pounds in 9 days, and I am only 5'1". But, the hospital said I just have constipation and sent me home without any further consideration. I don't know what to do! I am going crazy. I feel so dizzy, can barely walk, am queasy, and have constant sharp, shooting pains throughout my stomach-region. I have a very skinny body except for my stomach, which seriously looks as though I am going to give birth within the next several weeks. I am also beginning to experience incontinence.

So...any ideas or similar experiences? I've been do different doctors and hospitals. All of my CT scans have shown severe stool backup, and the physicians say I simply have constipation, but then they just discharge me without answering questions or providing care. How do I get rid of this backup? Enemas, laxatives, and stool softeners do not work, period, but even more so since this fecal blockage is in my UPPER GI-tract.

Thank you for any potential help!!!

(4 comments | Leave a comment)

August 21st, 2006


orientallilly
09:17 am
So today I woke up and my intestines ( Small and Large ), mainly the small feels like someone came into my room and repeatedly beat my torso with a rolling pin.

this hasn't happened in a while.  I'm thinking that it's just ibs related.  has anyone else had this kind of thing happen??

(Leave a comment)

January 3rd, 2006


swillyjilly
04:30 pm
Hi, I'm Jill.

I wanted to tell you guys about a new community i JUST created called untreated_pain


I have had pain for 10 years, I have been through many many months of physical therapy, 2 sugeries and delt with several disrespectful doctors. I often feel suicidal as I am so frustrated that I can not get rid of this pain and I cant seem to find a doctor to help me!

I have recently encountered many people here on LJ who suffer from chronic pain are are untreated because they are young or have an alternative look (tattoos, piercings dyed hair etc)or just because they dont have health insurance.

so if this interests you please come join my community, share your story, and help me get people organized so that we can get treated and be pain free!

(Leave a comment)

July 24th, 2005


paradiz
10:02 pm - 1st pain diary entry(I have fibromyalgia)
Lately the warm warm weather in South Cali has caused me to feel more fatigued from the time I get up, until the time I go to bed, and I've been having pain the same areas of my body since the heat has been constantly humid and hot with rare a breeze.

Sore,aching nawing pain, sharp pain in the mid to low back, and the back of my knees and back of both legs. The back of my neck feels like it's been yanked on, so it's a aching feeling along the back of the neck.

That's how my pain has been today. :-/ PAIN levels are between 6/9

Current Mood: indescribable
Current Music: Breathe(2am)

(1 comment | Leave a comment)

July 20th, 2004


biailisha
02:50 pm - CPPS
Pain since yesterday. Levator ani. Big flare up on psoriasis does not help. Internal work yesterday did not help. 4/10 pain. Semi-bedridden.

(1 comment | Leave a comment)

July 5th, 2004


biailisha
02:01 am - CPPS
Was pretty bad from last Friday to early Sunday. 5/5. General flareup, although mostly posterior levator ani. Has to be drugged twice (Friday=Saturday, Saturday-Sunday). Flareup was unusual, as the anterior levator ani has less of a flareup. The entire episode might have something to do with me having 1/3 pint of coffee ice cream (caffiene). It's the most caffiene that I had for 9 months.

(Leave a comment)

June 30th, 2004


biailisha
08:55 pm - CPPS
Yesterday was no good, posterior levator ani 5/10. Internal work done, smoothes some pain down to a 3/10. Took valium, ibuprofin, and doexpin, slept for 17 hours. Pain is now down to a 3/10.

(Leave a comment)

June 14th, 2004


biailisha
01:26 am - CPPS
4/10. Tremendous amount of perineal massage and trigger point on abdomin finally relieved the pain. By midnight it is down to 1/10.

(Leave a comment)

June 13th, 2004


biailisha
12:07 am - CPPS
Full blown levator ani anterior pain starting when I woke up. First time in over a month that I wake up with pain. Therapy was done around 10pm.

4/10 Pain

(Leave a comment)

June 11th, 2004


biailisha
01:42 pm - CPPS
Major break out continue, 3 hours after waking up. After therapy, conditions remains 4/10. Psoriatic breakout around area, and dermovate was applied around 6pm. Bedridden throught the day. Average Pain remained 3/10

Today condition was lessoned to 1/10 after ibuprofin.

(Leave a comment)

June 9th, 2004


biailisha
10:14 pm - CPPS
Bladder out of control onSaturday, drugged myself to sleep.
Today a major flare up around 3:30pm. 5/10. posterior levator ani. internal work done at 9pm. Still hurting. Ibuprofin, still hurting.

(Leave a comment)

May 30th, 2004


biailisha
10:57 am - CPPS
I just do not have sex often anymore, because of the illness. Once every three weeks is the norm now, and it is more for romantic reasons than sexual, since it always guarantees a flare up, and more painful consequences afterwards. Or pain during. It was never pleasurable.

Usually what happened was that either I used the levator ani (kegel) too hard, flaring it up; or by trying to avoid doing so, I substituted with other muscles and caused those muscles to screw up. Dysuria was the norm.

Last nite something happened differently. We decided to use a condom instead of the usual inserts. This means a lost of sensation to me (more so than the past when I used condoms it seems). Suddenly with no sensation, all I did was moving my hip, and my entire pelvis was relaxed during the entire ordeal. I actually at various times totally stopped because the relaxation was so nice it felt like my pelvic muscles finally got the rest that it never had for like 10 years.
When orgasms finally came (it took forever), it was a sensation that I had never had...multiple orgasms in waves...never intense, but just strong enough to be pleasureable. I wonder if this is how women feel.

No flare ups afterwards, no pain either. I also felt tired...a very different form of tiredness and sleppiness that I used to experience. I felt tiredness because my muscles relaxed, as opposed to sore and slight pain (espeically around kegel), which was the way I used to experience ever since I started to know sex.

The doctor told me that sex was supposedly a relaxing activity, so what I experienced must be it...first time in my life. Seems like I was doing it all wrong ever since the start of my active sexual life.

As for the record, I had went through close to four days of no pain last week, then pain at late evenings twice until Thursday (therapy day), after which I had no pain until yesterday afternoon. All the pain was contained by anti-inflammatories, or therapy. I had been doing paradoxical relaxations intensively for the past two and a half weeks. It is working, and I had not had a single morning of pain yet, as oppopsed to the past (every morning).

Nowadays I expect to have no pain everyday, until late afternoon early evening. Then I have to be in bed, doing all sorts of preventive measures, go to sleep early, and the next day I will be fine.

If this form holds up, perhaps I can start thinking about getting a part time job by July.

(Leave a comment)

May 19th, 2004


biailisha
09:00 pm - CPPS
It's been a struggle since last Friday, as I only got one good day (part of Saturday to part of Sunday). My intenstines are all so knotted up that it was unbearable. Taking medications put me to sleep non stop from Monday to Wednesday.
I felt like crap waking up. I am still hurting but right now it is down to a 2/10, so it is bearable again, as long as I stay in bed.

The only good times I have nowadays is in my dreams. No pain and I can run around or walk. I don't care whether it is a nightmare or not, as long as I am healthy in my dreams.

I'm just very very depressed.

(Leave a comment)

May 12th, 2004


biailisha
10:09 pm - CPPS
First time in two months that I have right testicular pain. Nausea all evening.

Pain: 3/10
Discomfort: 5/10
Distress: 2/10

(Leave a comment)

May 11th, 2004


biailisha
05:07 pm - CPPS
I'm not well at all. After going through six days with little or no pain, my pelvis gave out and I have been in pain since Sunday early evening. Therapy helped some but not all.

Pain is consistant between a 2 to a 4/10. Just enough to prevent me from doing anything constructive. I feel aweful again to be stuck in bed since Sunday night.

(Leave a comment)

April 2nd, 2004


biailisha
02:55 am - CPPS
Pain: 6/10

Levator Ani. Dysuria. It is on fire. I don't knwo what triggered it. It has never been this bad for close to a month, and never been this bad in this nature since November/December.

Right now it is 5/10 after taking methadone. Nothing seems to help.

(Leave a comment)

March 17th, 2004


biailisha
09:21 pm - Reprieve
I had 26 straight hours of no pain...and that just ended.

(Leave a comment)

March 3rd, 2004


biailisha
12:31 am - CPPS
After surgery on the Friday before last Friday, I was on V and other painkillers for six days. After coming off methadone on last Wednesday nite, I started to have trouble on Thursday nite. Starting from Friday the entire pelvis and later abdominal area totally screwed up. It's now Wednesday morning and while thigns had improved, I am still mostly confined to bed. Pain level is mostly 4, but discomfort level is 5 or occasioanlly 6, mostly due to nausea.

(Leave a comment)

February 13th, 2004


biailisha
06:16 pm - Fed Up
I'm fed up with my body. I'll give it three months or I'm outta here.

 

February 1st, 2004


biailisha
02:28 am - CPPS
Pain: 2/10
Discomfort: 2/10
Distress: 5/10

General prostate pain (fireball). General pelvic disocmfort leads to distress, as I am unable to do anyting, plus unable to pinpoint the location of the pain.
Doxepin makes me dizzy and relaxed, but did not stop the pain.

(Leave a comment)

January 30th, 2004


biailisha
01:14 am - CPPS
Pain: 3/10
Discomfort: 3/10
Distress: 3/10

General prostate pain (fireball). After therapy it felt much better, but it came back at night.

(2 comments | Leave a comment)

January 28th, 2004


biailisha
07:42 pm - CPPS
Pain: 2/10
Discomfort: 3/10
Distress: 4/10

General prostate pain. Difficulty in walking and standing.

(Leave a comment)

January 27th, 2004


biailisha
09:45 pm - CPPS
Pain: 4/10
Discomfort: 5/10
Distress: 6/10

Generla upper abdominal pain. Right scrotal pain.
Pain was reduced after therapy to a 2/10. Discomfort and distress remains around a 3: pain is gone, but still feel the bloating.

(Leave a comment)

January 22nd, 2004


biailisha
08:22 pm - CPPS
Pain: 7/10
Discomfort: 6/10
Distress: 7/10

General Abdominal Pain. Nausea. Vomitting sensation. General pelvic pain.
Pain reduced after therapy.

(Leave a comment)

January 26th, 2004


biailisha
11:21 am - CPPS
Pain: 3/10
Discomfort: 4/10
Distress: 4/10

Right orchialgia, dysuria, bladder discomfort.

(Leave a comment)

January 25th, 2004


biailisha
11:19 pm - CPPS
Pain: 7/10
Discomfort: 7/10
Distress: 5/10

General abdominal pain. General pelvic pain. Distress is less because I was delusional.

(Leave a comment)

January 19th, 2004


biailisha
12:12 am - CPPS
Pain: 5/10
Discomfort: 5/10
Distress: 4/10

Did not post lately but that does not mean the pain was gone. The pain mostly hovering around a 2 and a 3.

Today the pain is a little worse than moderate. Mostly prostate. Must be the result of the therapy.

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December 29th, 2003


biailisha
12:05 am - FPPS
Pain: 1/10
Discomfort: 2/10
Distress: 3/10

Apparently the dioxepin kicks in again. I slept for twelve hours today. My nerves have been calmed.

(Leave a comment)

juliann
12:33 am - One person's pain scale
This is not the scale that I use; mostly because my baseline (what I call a 3) is a 6 on their chart. But still it is interesting. By that chart I average 6-7 on sedentary days, and haven been at 8 for the past three days as *every* ailment I have is in full flare.

http://www.tidalweb.com/fms/fm_pain_scale.shtml

(1 comment | Leave a comment)

December 27th, 2003


biailisha
01:36 am - CPPS
Pain: 6/10
Discomfort: 3/10
Distress: 3/10

General pelvic pain after sex. Almost unbearable, but pain alleviated through stretching.

(Leave a comment)

December 26th, 2003


biailisha
05:55 am - CPPS
Did not keep up posting because I was drugged up with vicodin.

Pain: 3/10
Discomfort: 4/10
Distress: 5/10

This had been very frustrating, with the pain switched over to the left side of the pelvis for the past three days. Pain ranges from 3 to 6, with vicodin's help. Very depressed lately.

(Leave a comment)

December 22nd, 2003


biailisha
12:58 am - CPPS
Pain: 3/10
Discomfort: 3/10
Distree: 3/10

Took Vicodin this afternoon.

General pernineal and prostate pain and discomfort. Lower abdonimal pain and strain.

(Leave a comment)

December 20th, 2003


biailisha
10:50 pm - CPPS
Pain: 4/10
Discomfort: 3/10
Distress: 2/10

The three hour bumpy ride to see the specialist did it.

Pain: General perineal, urethral pain. Prostate on fire.
Discomfort: Slight Abdominal cramp causing bladder discomfort.
Distree: Painless vacation over.

(Leave a comment)

December 19th, 2003


biailisha
12:27 am - CPPS
Pain: 0/10
Discomfort: 1/10
Distress: 1/10

Since I am on the medication, the pain has since disappeared. The trade off is that I now have very little feeling around my pelvis, I got tired and sleepy easily. I also walk funny. Of course, this is a whole lot better than in pain.

I will update futhur if things changes, especially when physical therapy starts.

(Leave a comment)

December 17th, 2003


juliann
07:45 pm - Back on the bus
Went to sleep at 11 pm last night, woke up at 5 am and was unable to go back to sleep. Went to my dr's appt -- meds are unchanged, but she is harassing the pain clinic again to see if they can do anything for me and if not is sending me to the other one. I'd really prefer non-medicinal pain relief anyway. (The last clinic never even *tried* me on a TENS machine, etc.)

I felt find all the way there and back, it's about a 15 minute walk each way. It was cold but it didn't much bother me.

Until I got home. My husband hasn't event left for work yet (it was a very early appointment!) I was stinking hot from the walk and then all of a sudden I was freezing. Climbed in bed, turned on both electric blankets (one above and one below), tried to sleep...nada. I think I slept for about 15 minutes but then awoke after a really awful nightmare.

Since then I'm back in coldness, so I guess the fibro heat sensors have swung back that way. Bummer. I prefer the being too hot. I've also had pain and stiffness and my left knee is killing me when I stand on it. (Which is unusual, it's usually the right knee that hurts on just standing, while the left hurts only on impact.)

Everything aches. I've given up on doing anything productive. Still need to manage to feed myself, my husband is off at his work Christmas party and no telling when he will show up tonight. Those tater tots are looking mighty tempting...(read: easy).

(Leave a comment)

December 16th, 2003


biailisha
09:49 pm - CPPS
Pain: 0/10
Discomfort: 1/10
Distress: 2/10

Started Doxepin, prescribed by Stanford's doctor. All pains are gone, except now I am drowsy, and feel like a marionette.

(1 comment | Leave a comment)

biailisha
02:15 am - CPPS
Pain: 1/10
Discomfort: 2/10
Distress: 1/10

Mostly lower abdominal pain. Pelvic pain under control after stretching.

(Leave a comment)

December 15th, 2003


biailisha
01:56 am - CPPS
Saturday:

Pain: 5/10
Discomfort: 2/10
Distress: 1/10

General pelvis and abdominal pain. Vicodin.


Sunday:

Pain: 4/10
Discomfort: 3/10
Distress: 2/10

General pelvis and abdominal pain. No medication was needed.

(Leave a comment)

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