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Coping, Dealing and Living with Constant Chronic Pain
December 28, 2004
10:02 pm
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Zinnie
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Hi All,

This was a topic that some of us started discussing on another thread on the support side, and some of us thought this might be a good place for those of us that suffer with this to post our feelings here; as well as perhaps some things that we have found work for us in dealing with the physical pain of what we are going through.

So, I guess I will start.

Right now, I'm going through a new sort of pain. The Dr.'s told me that this would eventually come, but I guess I was not really prepared for the reality of it. It is this constant ache, deep down in the bones that is a nagging, constant thing. I take something (Trazadone) at night to help me sleep and is also supposed to help with the depression that having chronic pain can cause. It had been doing a good job for me for quite some time, but it seems like it is no longer working. I wake up because my back hurts. I take something for that, then wake up because my hips hurt. My pelvic area? - Where all this started - constantly feels like I have a 300 lb. weight pressing against me.

I have found that for me... although there is still some pain involved staying busy, especially doing happy things makes it easier to deal with. As many you know, the last week I have been going like crazy for the wedding, and it seems like I have not had to take too many pain pills. Last night? I had to break one of the morphine bulbs, and I HATE that.

I know it's just another thing that is being thrown my way, but sometimes? I just get so tired of dealing with all the pain.

So... there, I started. Anyone else? Ren'ai? Mama? Bel?

Let's help each other.

Love to all,

Zinnie

December 29, 2004
9:23 am
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mamacinnamon
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Ok, me next I guess.

Ya'll know my illness was caused from ptsd from my 1st marriage. That developed into fibromyalgia, which is caused by ptds as well as other things. Then it's just progresed from there.

I am one of those that if I stay busy and don't deal w/ it then that's ok w/ me. But, I had to start "dealing" with it about 2 years ago and got slapped in the face w/ it this last spring. Now life is interesting to say the least.

My biggest "fear" for now is that tonight will be my hubby's last work on nights. He starts days after the 1st. Oh, this is gonna be so terribly awful. He WILL NOT accept my diagnosis coz I've been to lots of quack docs over the last 9 years and they are now ALL stupid and don't know what they are doing. I tend to agree if I look back at all the things they did to me in the name of medicine. Anyway, he doesn't understand the lack of sleep this illness causes. Can't sleep at night but can fall asleep if I sit down during the day. He doesn't realize I can fall asleep, I just don't stay asleep. Part of the illness. We are gonna move my hospital bed out to the bedroom and put a twin bed next to it so we can sleep together. I sleep w/ a machine on my face. He says he has no problem w/ it. I DO! Anyway, pray for me next week coz this is gonna be a BIG transition and hard on me, probably by my own doin, but still very hard on me.

The ways I deal w/ pain:

I take drugs. I am on 15 scripts; 5 at least that deal w/ pain or causes the brain not to recognize the pain or block the nerve endings, etc.

Relaxation technique: Probably seen me mention that a couple times on a thread or two. Helps deal w/ pain and stress. Will teach it to you if you'd like.

Listening to music; I LOVE music. All types except opera and screamin jazz.

Done for now, ok next.....

December 29, 2004
7:25 pm
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sewunique
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Dear Zinnie,

I was wondering if this was your thread before I opened it up, after the few lines that you have shared with how all has been going for you. I pray for you and MamaC as I can see where you two are coming from. So perhaps I should not be writing on this thread? But I just want to tell you both how much you are on my mind. I see you Zinnie in your kitchen cooking and Loud around as you sit in your big comfy chair, and MamaC at her PC after getting hubby off to work late nite. I feel like I know you both, but we have never met. I am eager to read your posts and what you have to say full of wisdom and compassion for us all here. Your complaints are so small measured to the pains and magnitude of dealing with what faces you. It makes me feel humble and small to your strengths. Please keep sharing as we are somehow a part of your cyber world here, where we are yet together in a world more real than these keyboards. I love you both. I wish I knew what I could say or do to give something back to you both.

When I get my neck hurting quite badly which causes migraines, I listen to Cher's music, or what ever else that suits me or the oldies but goodies on the radio; (but not when I have the migrains full blown), it takes me back to familiar, cozy fun dreamy times in my life, even for a moment and soothes my soul. Yoga helps to stretch the muscles, keeps the joints limber and provides much oxygen to the body and muscles, which makes me feel so much more invigerated in a quite sort of way.

Love in friendship,

Sew

December 29, 2004
7:45 pm
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Anonymous
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I have recently been diagnosed with Chronic Fatigue Syndrome--something much like fibromyalgia. I got it from an Epstein Barr viral infection--the virus that causes mononucleosis. My immune system was not strong enough to kill off all of the virus when I was first infected, probably in my high school years.

I can't remember anything. I have these weird muscle aches and pains that move around as they see fit in my body. I started taking a new medication called "Cymbalta" in October and it has made a huge difference--like the difference between feeling like all I could do was become wheelchair-bound to "Hey, I'm walking and I don't hurt!" This medication is an antidepressant, that, for some reason also helps with deep muscle pain. It is FDA approved to treat either depression or muscle pain or both, which is why it seems to be a good med for those with CFS and Fibro.

I take ambien for sleep and this has made a world of difference. It doesn't disrupt the REM cycle, which to me is very important. I'm a big believer in dreams being spiritually meaningful as well as emotionally healing.

So, there's my "story" and I'm sure some of you have read it so many times that you are ready to barf at the sight of the name "Ren'ai" on any post but here I remain, nonetheless.

Zinnie, thanks for starting a wonderful and helpful thread. And thanks to all who have the compassion to write their own stories, or words of encouragement.

Love to all,

Ren'ai

December 29, 2004
8:07 pm
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sewunique
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Ren'ai,

I did not know about your pain and I would never guess from some of your threads. I have not been able to stay on this site for too long of late, so I am sorry that I missed part of your threads. My gosh, you and the others do not share the hurting part of your daily life. Instead, with your strength and forging ahead, you share many other problems with others here. I give you credit for being so involved here when you have so much else going on with your personal life. I will add you in my thoughts and prayers if that is ok with you. It is my way of asking some Higher power to guide and help us all. Thanks for sharing a bit about yourself to our family here!

Sew

December 29, 2004
8:07 pm
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sewunique
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Ren'ai,

I did not know about your pain and I would never guess from some of your threads. I have not been able to stay on this site for too long of late, so I am sorry that I missed part of your threads. My gosh, you and the others do not share the hurting part of your daily life. Instead, with your strength and forging ahead, you share many other problems with others here. I give you credit for being so involved here when you have so much else going on with your personal life. I will add you in my thoughts and prayers if that is ok with you. It is my way of asking some Higher power to guide and help us all. Thanks for sharing a bit about yourself to our family here!

Sew

December 30, 2004
12:24 am
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Zinnie
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Hey Sew,

Of course you are welcome on this thread - as is anyone...

The reason I started it, and the reason for putting it on this side is:

1. For support for those of us that suffer from chronic pain.

2. Brain-storming - what works for one (or more) of us that perhaps some of the others have not tried yet. Whether it is a medication type, a therapy, relaxation techniques - whatever.

3. A place to "vent" - for many of us who suffer from chronic pain, there are times when we want to be "babies" or "whiney-bag" about it - well, O.K., sometimes I do, maybe the rest of the world copes better. But, we don't want to burden our spouses/significant others/family members and certainly not our co-workers.

4. The reason I put this thread on this side is because it could possibly be dealing with some "gritty" stuff. Treatments and such, and I don't want to scare anyone off - especially newcomers who might be in need of emotional support. The last thing they might need is to pull up a thread (while in a rough spot emotionally) and read about how I was poked and prodded by 173 needles today.

So, or should I say Sew? (yeah, I know, don't quit my day job) - please by all means, feel free to post away.

Hope you are all well, and having a relatively pain free day today.

Z.

December 30, 2004
1:00 am
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SweetAmanda
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It's sobering to read about some of the sweetest people on here living their lives in physical pain.

(((((((((( Zinnie, mamacinnamon, sewunique, Ren'ai ))))))))))

I hope that looks right! Those are snuggles! =)

~Amanda~

December 30, 2004
5:06 am
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sewunique
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Zinnie,

I know what you are saying. I understand and am glad that you started this thread. If I could be there to hold your hand, I would, for you or anyone here. Yet all I can do as others, is to be here for you. What I have had with back problems for the past twenty years is nothing compared to you and Ren'ai and MamaC and others. You guys/ gals are strong, but need hugs and our ears to vent to. This is the place for you all, as AAC family encircles and embraces you.

Sew, or so, hope we can add levity when it's welcome or needed and the rest of the seriousness will perhaps be easier. I am so blessed and grateful for all of you being here, and now I stop to keep from getting all mushy. This is a great thread.

Love and hugs to all,

Sew

December 30, 2004
9:23 am
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mamacinnamon
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Sew, there you are. Have wondered what happened to you. Hope you are well and everything is ok w/ you.
Don't think you shouldn't post here; it's for everyone including you friend. Ya know, the extent or severity of pain we each have is different but just as important? ummm (don't know if that's the right word) as the next. All unique but the same in a way. No worse or better than the next person's.

Ren'ai, Don't say things like folks want to barf at the site of your name. That's to funny to say, but seriously not so. I have a good friend that has CFS. It played havoc on her for several years and then just poof went into remission. I will pray for yours to hit remission soon.

Zinnie - are they doing acupuncture on you? Is that the reason for the needles and is it working? My hubby has wanted me to do acupuncture for years. Told him he just wants to see me set on fire.lol. He's so not funny.

Amanda - Thanks for the snuggles. I do appreciate them.

I'm ouchy this am. Right shoulder and hands hurt so won't type much. Just wanted to say to each of you to have a wonderful day. Always think on the positive and not the negative. God bless each one of you.

December 30, 2004
12:34 pm
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bel
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Hello I guess you can add me to this list of people that suffer with chronic pain, I have fibromyalgia, artitis (cant spell sorry) so my bones ache everyday. Lately when I try to sleep my fake knee hurts, my real knee hurts, my hips hurt, my elbow hurts all the way up to my shoulder I think I may have carpal tunnel there. My left ankle swells everyday since I broke it years ago so you name it it hurts. I take alot of meds for different things but pain is pain and sometimes nothing helps.

I try not to dwell on my hurts because I am very happy to be up and about and not stuck to my bed or a wheelchair. I think too if I lost more weight things might be easier for me but it’s hard.

Zinnie IM sorry your suffering so and sew and Mama and Sweet.... wishing you all many painless days ahead.

December 30, 2004
1:38 pm
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mamacinnamon
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Bel,

I would like to know more about your fibromyalgia if you don't mind talking about it. Like where or what you got it from; has it progressed; did you have other things go wrong after you got the fibro; meds you are taking....I know it's alot. I have had fibro for 10 years and it started progressing 2 years ago and I only had HAD to face it this last spring so am trying to understand and learn what I can. If you don't want to talk about it then just say so and that is ok too.

Thanks

December 30, 2004
2:01 pm
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bel
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Hello Mama I dont mind talking about it but I dont have much information about fibro. I think I got it about 5 years ago but didnt know it until a couple of years ago. The doctors dont really give me anything for it, sometimes I feel like they dont listen to me or even care what I go through. IM taking meds for high choletrohl, high blood pressure, trazedone like zinnie to sleep better, paxil for anxiety and the doctor told me to take gluecosomine to help rebuild my bones.

My illnesses started to get worse a couple of years ago, it may just be normal aging or some offsets from the fibro...I dont really know.

Bel

December 30, 2004
2:20 pm
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Wow! It is exciting for me to hop over here to scope out this thread and see the love, understanding, and support just pouring out of people! We really are a great group of folks!

Zinnie, thank you for starting this thread!!!

Sew, of course your prayers are welcome! I'm grateful that you are willing to make time for me, especially in that manner. I think praying for someone else is a very intimate thing. It makes me feel good that you are willing to do this for me!

MamaC, I'm hoping you might do some research on the Cymbalta, then talk to your doctor and see if it may help you. Our ailments are very similar. I was diagnosed just this October, but after a month on the Cymbalta I could really tell a difference.

Bel, I know you must struggle every day! It is hard because fibro and CFS are sometimes considered such a mystery, and many people who haven't lived with these ailments will look at us like we are just whiney attention-seekers. It sucks!!!

Amanda, thank you for your loving support and kind words. A gesture that soothes the heart can ease a lot of physical pain.

What I'm about to say is a real downer, but I feel like it is important. On Dec. 17th a person dear to me died of an "accidental" overdose. She had fibromyalgia. She was also diagnosed as "bipolar" though I think this was a mistake. She was severely sexually abused as a child, and I think that the severity of her PTSD led to a mis-diagnosis. Just my opinion...

She was taking oxycontin for pain. Now, let me say that oxycontin is an excellent medication for pain. It works wonders for me when I get migraines, or have those deep muscle pains that just feel like they are rooted in the soul. (Actually, I think much physical pain is rooted in the soul, especially if you are a surviver of abuse!)

Oxycontin is also highly addicting. And the most frightening aspect of this medication (I know from personal experience) is that if you take it when you are severely depressed and not receiving proper treatment for your depression (like my friend) you can get so "buzzed" from it that you have a very nonchalant attitude about death. You will take more and more and more saying to yourself "If I die, it's meant to be." I believe this is what happened to my friend. I almost died while abusing oxycontin. And my daughter, little did I know, had gotten into my purse and pilfered some of my oxycontin. She ended up in the ICU, would have died had me and my son waited another 30 minutes to take her to the hospital. She said she just kept taking it with that same though in her head "If this kills me, it was meant to be."

There are likely hundreds of thousands of people out there who have CFS or fibro and haven't been diagnosed. They are depressed--with good reason. Your body doesn't work right. You can't sleep but you are tired all the time. Even when you do sleep you are tired. The "mystery pains" move around in your body and you question your own sanity. Sleep deprived, aching, and depressed, too many of us will cross the line in one way or another and end our lives. I have struggled for YEARS with suicidal ideations, never suspecting that there was an actual reason for my feeling the way I felt.

I still have moments when I wish I could die, but since my friend died, I promised myself and my family that I will not kill myself. I have also promised myself that there will be no more self-mutilating for me as well.

Our lives, it seems, hang in a delicate balance. If we don't put ourselves ahead of everything else, we can't survive with any quality of life at all.

Love to all,

Ren'ai

December 30, 2004
4:52 pm
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bel
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Ren'ai, alot of things you said really hit home for me. We do suffer and yes the pain moves around I told my doctor that and she was very rude saying oHHH now your pain moves around hu? I did change doctors but still not taking any pain meds for my fibro...I am taking vicodin for my knee pain but they will take that away from me soon. I was abused as a child and do or did have deep down pain and did cut for a short time but I feel I have overcome most of my pain and embarrassemt and feelings of guilt.

Thank you for writing and IM so sorry about your friend. I hope you feel better soon and your daughter stays well and healthy.

December 30, 2004
5:36 pm
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Bel,

If your doc is treating you as she is blowing you off then can you get another doctor. Unfortunately, fibro is one of those illnesses that alot of docs still do not believe in it. Or it is diagnosed as a "catch all" term for who knows what is wrong w/ you. It took me years to find my doc that believes in fibromyalgia. But, unfortunately this doc isn't dealing w/ the issue. He says his job is to keep me from having pain so he has no problem prescribing medications.

December 30, 2004
5:42 pm
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Any practitioner with any knowledge about fibro or CFS knows without uncertainty that the pains move from place to place! And this doctor was a woman to boot?!! Man, that pisses me off!!!

I hope your new doctor is a better one and will pay attention to you. We know our bodies better than anyone else!

On the 10th of this month I got very sick with a strep infection. The compromised immunity with the presence of the EB virus makes me prone to such infections. I went to my practitioner and began a round of antibiotics. That same day I took off on a 250 mile trip to see my partner (who has since broken up with me).

I was not thinking clearly. When I was weighed at the appointment I was about 30 pounds over my normal body weight. I couldn't fit my rings or watch on my body, I was so full of retained fluid--about the equivalent of 3.5 gallons! I started watching my salt intake and drinking lots of water, but continued to retain some of the fluid.

I went to see my practioner this week. I've lost 20 pounds of water but needed to be placed on lasix, a diuretic. Great, right? Another pill! I swear if someone could shake me I'd probably rattle like a maraca!

Since the 10th I noticed that two of the fingers on my right hand are numb. My practioner said that the excess fluid likely compressed one or more nerves, and if the feeling doesn't return I will probably need some kind of physical therapy. If that doesn't work, the damage is permanent.

What a wake up call! Fuck. I'm only 41 years old, people!

So, I am working towards change. I must begin to value myself and care for myself the way I have cared for so many others in my life. I'm fearful that I'll end up on disability, but if that's what the plan is for me, who am I to argue...

Love to all,

Ren'ai

December 30, 2004
5:53 pm
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ooops! Hit the wrong button. lol.

I cannot imagine not having any pain meds to help deal w/ this. Bel I have run across so many that have docs that won't give them any. It is just absolutely cruel in my opinion.
How do you get thru the day? My fibro presented in my hands and bilateral arms first. I couldn't even comb my hair or fasten my bra by myself the pain was so bad.

I take oxycontin, vicotin,ultram for pain, plus others to block the nerve endings from feeling pain, etc. I can relate to what Ren'ai is saying about the oxycontin. I have my moments of depression, but most of the time not. I think because I grew up w/ a mom that battled depression I refuse to let myself get there.

December 30, 2004
9:43 pm
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Ren'ai,

Have they given you any reason for the water weight gain? Two years ago I gained 80 lbs. in less than a month...water weight...and it has stayed since. Cannot no matter what get it off. I have a machine to pump my legs each day to keep the edema down. 3+ pitting in my legs. And I have both legs wrapped every day to try to keep the edema down. Just wondered if you were told anything that could help.

Also, I just read your post and I am so very concerned about you. I was a strep b carrier. I have done research concerning strep b and fibro because of the immune system being down. It has also been a BIG issue w/ the docs. I am gonna look at what I compiled and bring it across for your attention. I'm not trying to scare you, but you MUST stay on top of the strep infection problem. I just want you to be informed. Will be back w/ it in a few.

December 30, 2004
10:20 pm
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Ren'ai,

Oh, I am 45 by the way. Thought you'd like to know. I've seen folks from 16 to 60 w/ fibro and chronic fatigue. I go to a site called hugs.com to talk w/ others that have the same illness.

There was a concern as to me having strep b and developing a strep infection so I did research on it. This is just for your info. Not trying to diagnose, treat, scare you in any way. I was trying to make it less, but could not delete any out. This info is in regard to adults, not children. Here it is:

GROUP B STREP:

In adults, group B strep usually causes no symptoms. However, in rare cases, it can lead to serious bloodstream infections, urinary tract infections, skin infections, and pneumonia, especially in people with weakened immune systems and other health problems, such as diabetes.

How do people get infected with group B strep?

Group B strep bacteria are different from many other types of bacteria that can cause disease. People can be "colonized" with group B strep. This means that they carry the bacteria in their bodies but are not infected and do not become sick. Adults can carry the bacteria in the gastrointestinal tract, genital tract, or urinary tract. About 10% to 30% of pregnant women are colonized with group B strep in the genital tract.

Colonization with group B strep is usually harmless. The bacteria can become deadly, though, if something happens that allows them to invade the bloodstream. In adults, weakened immunity resulting from cancer treatment or a chronic illness can prompt an infection. More often, pregnant women who carry the bacteria can unknowingly transmit group B strep to their newborns at birth.

Newborns can acquire early-onset group B strep disease either before or during delivery. The cause of late-onset disease in babies is not well understood.

Who is at risk for group B strep infection?

Adults with illnesses that weaken the immune system, such as diabetes or cancer, are at risk of infection with group B strep.

What complications can result from group B strep infection?

Group B strep infection is fatal in about 20% of infected men and non-pregnant women and about 5% to 15% of infected newborns. Babies who survive can be left with speech, hearing, and vision problems as well as mental retardation.

Is group B strep infection an emerging infectious disease?

Yes. Since 1970, group B strep infection has become the leading bacterial infection causing illness and death in newborns in the United States. Cases in adults are also on the rise. The number of adult infections nearly doubled during the 1980s and continues to increase.

http://www.groupbstrep.org/gbs.....tGBS2.html

How is GBS transmitted?
Is GBS a sexually transmitted Disease?

GBS is a naturally occurring bacterium in the human body of both women and men. Since it is commonly found in the vagina, some people wonder whether GBS is a sexually transmitted disease. The answer is 3No2. GBS bacteria usually do not cause genital symptoms or discomfort and are not linked with increased sexual activity. Women found to carry GBS do not need to change their sexual practices.
_____________________________________________________
http://www.cdc.gov/groupBstrep....._adult.htm

What is the rate of serious group B strep infections among non-pregnant adults?

The rates of serious group B strep infections are much higher among newborns than among any other age group. Nonetheless, serious group B strep infections occur in other age groups in both men and women. Among non-pregnant adults, rates of serious disease range from 4.1 to 7.2 cases per 100,000 population.

How serious is this infection in adults?

The average death rate for invasive infections (infections where the bacteria have entered a part of the body that is normally not exposed to bacteria) is 8-10% for adults ages 18-64 and 15-25% for adults 65 years of age and over. Mortality rates are lower among younger adults, and adults who do not have other medical conditions.

Who is more at risk for adult group B strep disease?

The rate of serious group B strep disease increases with age. The average age of cases in non-pregnant adults is about 60 years old. Most adult group B strep disease occurs in adults who have serious medical conditions. These include: diabetes mellitus; liver disease; history of stroke; history of cancer; or bed sores.

Among the elderly, rates of serious group B strep disease are more common among residents of nursing facilities, and among bedridden hospitalized patients. Group B strep disease among non-pregnant adults may often be acquired after recent trauma, or after having certain invasive hospital procedures like surgery.

What are the symptoms of group B strep disease in adults?

Sometimes group B strep can cause mild disease in adults, such as urinary tract infections (UTIs, also called bladder infections). These are treated the same way urinary tract infections caused by other bacteria are treated, with antibiotics, and are usually not that serious.
Serious, invasive disease (infections where the bacteria have entered a part of the body that is normally not exposed to bacteria) can present in a number of different ways. The most common problems in adults are: bloodstream infections, pneumonia, skin and soft-tissue infections, and bone and joint infections. Rarely in adults, group B strep can cause meningitis (infection of the fluid and lining surrounding the brain).

How are serious group B strep
infections diagnosed?

If doctors suspect a patient has an invasive group B strep infection, they will take a sample of sterile body fluids, such as blood or spinal fluid. Group B strep disease is diagnosed when the bacteria are grown from cultures of those fluids. Cultures take a few days to grow.

How are serious group B strep infections treated?

Group B strep bacteria are usually treated with penicillin or other common antibiotics. Sometimes soft tissue and bone infections may need surgery. Your treatment will vary according to the kind of infection with group B strep you have, and you should ask your doctors about specific treatment options.

Is there any way to prevent group B strep disease in adults?

Standard infection control measures, particularly for patients who are hospitalized or in nursing homes, help reduce the risk of bacterial infections, including those caused by group B strep. Researchers are currently working on developing a group B strep vaccine which may one day be available to the public as a way to prevent serious group B strep infections among adults, particularly among the elderly.

If you would like to learn more about group B strep disease in adults, see the following articles:
Farley, M. M. 2001. Group B streptococcal disease in nonpregnant adults. Clinical Infectious Diseases 33:556-61.
Jackson, L. A., Hilsdon, R., Farley M. M. et al. 1995. Risk factors for group B123:415-20. streptococcal disease in adults. Annals of Internal Medicine

Last update: December 2002

Is there any way to prevent group B strep disease in adults?

Standard infection control measures, particularly for patients who are hospitalized or in nursing homes, help reduce the risk of bacterial infections, including those caused by group B strep. Researchers are currently working on developing a group B strep vaccine which may one day be available to the public as a way to prevent serious group B strep infections among adults, particularly among the elderly.

If you would like to learn more about group B strep disease in adults, see the following articles:
Farley, M. M. 2001. Group B streptococcal disease in nonpregnant adults. Clinical Infectious Diseases 33:556-61.
Jackson, L. A., Hilsdon, R., Farley M. M. et al. 1995. Risk factors for group B123:415-20. streptococcal disease in adults. Annals of Internal Medicine

Last update: December 2002

December 31, 2004
9:20 am
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Zinnie
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Geez! Popped over here thinking I might have a response or two... but as LOUD would say "wowee kapowee!"

I'm so glad we are all here sharing what works and all.

I will post more, but later, but sadly - I'm off to take some pain meds.

Write more later.

Love to all,

Z.

December 31, 2004
9:40 am
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mamacinnamon
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Zinnie,

My prayers are w/ you. Please take it easy and get lots of rest this weekend. Looks like all the activity is gonna catch up w/ you. I was truly hoping it wouldn't.

December 31, 2004
1:40 pm
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Anonymous
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Thanks so much for all the information on strep B. I'm going to print it out so I can look it over again and really take my time.

My 2nd night in a row not able to fall asleep until the wee hours of the morning so I'm sitting here at my PC, trying to type and keep my eyes open at the same time...

Maybe tonight I'll get lucky and still have insomnia. It is New Year's Eve, after all...

Love to all of you!

Here's to a new year, full of new surprises!!!

Ren'ai

December 31, 2004
7:01 pm
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Worried_Dad
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Zinnie,

I am so glad that you have started a thread to address your own personal needs for support and healing. You have given a lot to many of us here and you deserve some love in return.

I see several things that need to come back to this thread...

First, most of all I have heard you, I have heard about your pain, and it hurts me to hear about it. It makes me hurt to hear about your hurt. It makes me hurt to feel helpless to help you. It makes me angry that you hurt so much. It makes me angry to feel so helpless.

January 1, 2005
4:55 pm
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Zinnie
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Hi All,

Finally had a chance to sit here and read all through the posts. Lots of great information that we are all sharing, and to the other posters here - Sew, Amanda, Worried Dad - thanks for the gentle thoughts, well wishes and prayers - they do indeed help.

Worried Dad, if I may - you said above that there are things that you would like to see brought to the thread - what else do you see? I ask you this as I know you are not only a nurse, but a researcher... so always willing to listen. Also, by the way, while I have you on my mind, and at my finger tips, I gave those links to my son and daughter-in-law that you gave me regarding his heart condition. They will look into them once they get home. He is doing well by the way, still moving pretty slow, but recovering well.

Anyway... I have been blessed in finding a wonderful family Dr. who has really done more for me in dealing with the disease and the other problems that come along with it, both physical and mental than most of the specialists. Now, the thing that has me worried is that I know I need more surgery, and the surgical specialist that I have been using for the last seven years has retired, which means I have to find a new one. As this is dealing primarily with the "female" organs, for you ladies (and WD being the sensitive guy... just love ya!), you know how difficult this is. It's hard enough to find a good OB/GYN that you really like - but then to find one that you know you have to go see almost weekly pre and post op? YUK!

For the pain, I have Ultram, which helps but of course for the really bad pain, the narcotics work better - but, I will admit, due to my family history on both sides of alcoholism, I'm deathly afraid of becoming addicted. Vicoden does an O.K. job, the the Norco mix of 10/325 actually does a better job of killing the pain, with less acetaminophen - which as we all know can cause liver shut down if taken in excess - although so many of these things have these side effects.

Interestingly enough, the other day the pharmacist told me that if aspirin was discovered in todays day and time? It would be prescription.

When Oxycontin became available, I did ask both my pain management Dr. and my family Dr. about it. The pain management Dr. was kind of so/so about it, but my family Dr. said he would never prescribe it to anyone because of the addictive factor, and the same thing Ren'ai that you describe - the feeling of "if I die, it's O.K." - he told me this years ago and turns out he was right.

I have been fortunate in having a Dr. who does listen very seriously to my pain complaints and works to help keep it at bay. I too have heard so many stories of people who have Dr.'s that are like "oh... moving pain? Really? Hum." I mean... how would they like it?

Bel, we have talked before, I know - that if you are not feeling like you are being heard than you need to find a Dr. that will listen to you and work WITH you.

Now though as a result of the chemo - it looks like I will have to have knee replacements done. That is a side effect, I have come to find out that chemo can weaken the joints - of course it does not help that I'm toting around 40 extra lbs. Part of it is from the meds I know - leading me to look like a pumpkin, and part of it is... well... I like to eat! You cannot love to cook as much as I do and not taste.

Speaking of - I do have to share with all of you that my family Dr. has a good sense of humor... remember when Fen/Phen (sp?) and Meridia came out and all? I asked him about it because he is always on me about my weight. Of course it does not help that he lost about 30 lbs. 15+ years ago and has kept it all off, or that I have an excercise freak for a husband... anyway, I asked him about these drugs to help me lose weight and he said "they should never have released those drugs on to the market, they don't have enough research done of them and I believe they will lead to heart trouble" - well sure enough right? Anyway... so I said "well, can you at least tell me a good diet to follow?" He replied "the put your fork down diet." Made me laugh anyway - and in reality that IS good advice.

O.K. - back to the subject. I also take Skelaxin for the severe muscle cramps as a result of all of the surgeries to remove tumors before my hysterectomy and also the removal of my cervix. That is sometimes an after effect, you can have severe vaginal cramps and trying to explain that to someone who does not understand is like trying to teach the dog how to use the toilet. But, the Skelaxin does do a good job especially in conjunction with the Norco.

Ren'ai, I have an appointment with my family Dr. this week, and and definitely going to talk to him about the Cymbalta. Does it make you tired, or are you able to take it in the morning and still accomplish what you need to do? Please let me know as I'm insterested in seeing if it will help me with not only the muscle pain, but the depression as well.

Thanks all - I'm glad we are all here to suppport each other.

Love to all,

Z.

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