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Old 05-11-2005, 01:25 PM   #1
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ugh

ok that was a dumb post lol

Last edited by angels_among_us; 10-09-2005 at 02:55 AM.

 
Old 05-11-2005, 02:27 PM   #2
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Re: sometimes i just wish i was not born

Angels
I wish I knew some of the medical terms to help you out with some of your questions but I haven't a clue. I am writing because I can relate to your feelings of frustration and feeling like no one cares. I know firsthand how awful it feels when your doctor leaves your hanging in pain and without help. Did the nurse say why they won't give you something for pain?
There's no easy answer here. Being in pain sucks...there's no better word for it, it sucks, and it makes you wonder if you did something wrong in a previous life (not that I believe in that stuff but I have wondered that one myself). Anyway, just know that you have a buncha people here who are experiencing the same thing you are and we want to help. May you soon find peace and pain free days! I wish you the best.
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Old 05-11-2005, 02:30 PM   #3
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Re: sometimes i just wish i was not born

I am so sorry you are suffering. You need to address these issues. People here will listen. Can the doctor you see give you a consult to see someone else? Reumatology might be in order. It sounds a little like Fibromyalgia. Hang in there and please push until you get to see another doctor!
JT

 
Old 05-11-2005, 02:41 PM   #4
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Re: sometimes i just wish i was not born

thanks you 2

Last edited by angels_among_us; 10-09-2005 at 02:55 AM.

 
Old 05-12-2005, 07:09 AM   #5
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Re: sometimes i just wish i was not born

Your liver enzymes are definitely higher than the norm.The AST,ALT and alkaline phos..your crit and hemoglobin would also indicate some sort of a liver dysfunction.If your liver is having problems, it can also affect your WBC count.your other symptoms would also suggest some sort of an impairment with the liver(the memory probs and the over all body/muscle aches,and headaches).I think it would be a good idea to see a good GI doc.my son went through liver failure and Tx about five years ago.All of his same labs as yours were out of whack too.As well as his kidney functions.His spleen was also affected due to the back up of blood that could no longer flow properly through his liver.I certainly hope that whatever is going on with you is treatable.Good luck,and please keep us posted.marcia

 
Old 05-12-2005, 04:16 PM   #6
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Re: sometimes i just wish i was not born

angels,

You did the right thing, you called a Rheumatologist. A positive ANA with systemic inflammation is a high indicator of Systemic Lupus. There is a Lupus board here, go there and learn as much from your fellow board members as you can. Go to your library or book store and get books on Lupus.

It is possible that you may also have Fibromyalgia, a lot of Lupus patients develop Fibromyalgia. I have Fibromyalgia and am currently being tested for Lupus. My ANA tests have always been negative but my PCP believes I have something autoimmune going on so he went ahead and ordered the other tests that are done when you have a positive ANA.

Fibromyalgia is not an inflammatory condition, Lupus IS. Lupus is an autoimmune disorder that can affect your major organs, like your liver and kidneys. It would be the reason your bones feel sore, it is an inflammation that does cause your joints to become inflammed. I don't mean to scare you, but I know a lot about this condition and I believe you need to know what you are dealing with. There is no cure, but there is pretty good treatment, and new treatment and meds are being discovered all the time. It is certainly not a death sentence. It's something you are going to have to work your life around, but you can do it!

I am suggesting to you that you go to the Lupus board and read the posts there. There is one specific member who is very experienced with Lupus AND Fibro. She has both, as well as MS. Her username is "goldenwings" and she posts on the Lupus board and the Fibromyalgia board. Also go to the Fibromyalgia board and do a board search on the word Lupus and all the posts regarding Lupus will pop up for you. There are a lot of post on the Fibro board regarding Lupus because, like I said, it is common to have both. Lupus is a debilitating condition while Fibro isn't. In this I mean that Lupus, being systemic, affects and impacts more of your body parts, i.e. skin, bones, joints, etc. while Fibro is a connective tissue disorder, a muscularskelatal condition. There is recent debate out there as to whether or not Fibro is also consider autoimmune, and there is current re-evaluation as to whether Fibro should be classified as a disease rather than a syndrome.

The meds for Lupus will be mostly for inflammation and pain. Depending whether or not you have a rash, (usually on your face called a "butterfly rash") you may be prescribed something for that. Prednisone used to be used for initial treatment of Lupus but it has some funky side effects, so I don't know if docs use it so much anymore, but it is a good anti-inflammatory when used short term.

I am glad I ran across your thread since you did not seem to know what a positive ANA meant, and it so happens I do and I have friends with Lupus and in posting on the Fibromylgia board for a long time now, I've become pretty familiar with ANA blood test results simply by other members sharing their stories. Amazing what you learn on these boards. I also was misdx'd years ago with Lupus, so of course I read everything I could get my hands on about Lupus. It's initials are SLE, I can't remember what the "E" is for, you will find out. But I do know that the L and E words are Latin for "Wolf" so Lupus is often called "the Wolf". There is a good book our called "Living with the Wolf" that is authored by a woman who has Lupus. It's an older book but she describes her step by step learning to cope and live with Lupus, from the initial dx to incorporating it into her life and how she and her family had to accomadate themselves into a new lifestyle because of Lupus.

Like I said, it isn't a death sentence, it will change your life, as do most conditions. You will recieve treatment, and you will be taught how to best care for yourself so that you don't experience many "flares". Don't be scared, grab it by the horns and let it know that you are the boss! And please make sure your family understands that you will need their support and their help when you have days where you don't feel well. K?

I would like to check back on you. So I'm going to right your username down so I don't forget it. You can usually find me here on this board or the Fibromyalgia board, so please let me know what you find out and how you are doing. Please? Oh and may I ask your age? Are you married, kids? Just wondering.

Take care angel and please know that I'm thinking of you and I'm rooting you on! Let me know what your doc says. Please.

Hugs to you dear,
tk

One more thing: Don't ever say you wish you were never born! You are here for a reason, just like the rest of us. And you know what else, I believe that those of us with illnesses and conditions like the ones listed here on the boards are here for an even more special reason. It may be you who becomes an advocate for Lupus patients, or you that helps docs find a cure. You are here for a reason and I know about not wanting to wake up somedays, believe me, but it takes more courage to live especially with an illness or condition. "Checking out is the easy way to stop feeling, going on with your life takes courage and you have no right to take the easy way out. Be the better person and don't let your pain or your condition win this battle. You are in charge remember? We are straight now right? Right. I would still suggest that you tell your doctor what you have said in this post about wishing you had never been born. K? I see a Psyc on a regular basis and believe me, chronic pain can surely cause you to feel depressed and there is no shame in talking to someone (professional) about those feelings. So, IMO, you should tell your Rheumy how you feel. And when you find yourself feeling like everything is crashing in around you, or you are having a bad day, come here to the boards and post your feelings, get them out, and who knows maybe someone else will be feeling just as bad and you can help them while they are helping you. Oh and don't be upset when you post and it doesn't get a reply right away. Especially on the PM board. If you look at the daily posts on the PM board, there are quite a few each day, so it's easy for a post to get "buried". If you feel like no one is answering your post, it's not that you are being ignored. Just go to the thread you started and reply to your own thread by typing in the words "bumping up" in the text box. This will bring your post to the top of the list for awhile.

Don't give up and don't give in.

Last edited by tkgoodspirit; 05-12-2005 at 04:41 PM. Reason: to add a P.S.

 
Old 05-12-2005, 04:54 PM   #7
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Re: sometimes i just wish i was not born

Hi angel,

Me again. I just re read your other post where you said your doc doesn't deal with pain issues. Well, that's just silly. Even the most conservative GPs will prescribe something like Darvocet or Ultram. Those are pretty "tame" pain killers. If anything call his office and ask him about precribing you either Darvocet or Ultram/Tramadol, just enough until you see the Rheumy. Like 10 days worth of pills with no refill, I can't see how that would kill him!

Never hurts to ask.

Hugs,
tk

 
Old 05-12-2005, 05:26 PM   #8
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Re: sometimes i just wish i was not born

Sorry your stuff hurts...glad youre seeing a rheumy that sounds like the best direction. as far as your labs were well you may have been merely "dry" that day and needed a little fluid like a glass of water. I hope you find out what's wrong so you can feel better, please let us all know.

 
Old 05-12-2005, 10:47 PM   #9
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Re: sometimes i just wish i was not born

your right. what i meant was i wish i was not born with these conditions

Last edited by angels_among_us; 10-09-2005 at 02:56 AM.

 
Old 05-12-2005, 11:36 PM   #10
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Re: sometimes i just wish i was not born

Quote:
Originally Posted by feelbad
Your liver enzymes are definitely higher than the norm.The AST,ALT and alkaline phos..your crit and hemoglobin would also indicate some sort of a liver dysfunction.If your liver is having problems, it can also affect your WBC count.your other symptoms would also suggest some sort of an impairment with the liver(the memory probs and the over all body/muscle aches,and headaches).I think it would be a good idea to see a good GI doc.my son went through liver failure and Tx about five years ago.All of his same labs as yours were out of whack too.As well as his kidney functions.His spleen was also affected due to the back up of blood that could no longer flow properly through his liver.I certainly hope that whatever is going on with you is treatable.Good luck,and please keep us posted.marcia
thankyou for your post. I Hope it is treatable also. How is your son doing now? good i hope!

 
Old 05-13-2005, 10:22 PM   #11
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Re: sometimes i just wish i was not born

Hi angel,

Your post made me cry when I read about your sweet babies. Bless your soul. It sounds like you have a wonderfully caring hubby tho, that is great.

As for your comment about depression, you are very right. Depression DOES cause pain.

No, I don't think it would be a good idea to "go off" on your new doc either. Just understand that sometimes dx'ing Lupus can take a long time, and until some doctor actually runs the right test, Lupus can go undected for many years, especially if you aren't showing any external physical symptoms. I don't know how intense your tests were, but now that you have a positive ANA there should be about 5 other tests run on you plus a urine specimen. They should take about 4 or 4 viles of blood. These tests will tell your doctor more about your condition. I'm not sure exactly what they are for, as I just had them all ran myself and I don't yet have the results back, I just know that there were about 5 or so checks next to the blood tests that are taken after the initial ANA test.

Just remember that most of the pain from Lupus is inflammatory pain, which is fairly easy to control as there are many many medications out there to treat that kind of pain. Depending on how advanced the Lupus is, will determine the treatment. And a lot of times Lupus patients will react poorly to the initial meds until you get used to them.

My advice to you, is be patient, ask a lot of questions. Write them all down before you appt and take them with you so you won't forget what you want to ask your new doctor. Do tell your doctor that you feel depressed from time to time. This will be different than telling him/her that you wish you were never born. Yeah that kinda raises a red flag! I DO understand your wish for a new body, believe me. But your doc should know that your emotional well being is becoming affected by your pain and frustration and maybe prescribe you some meds that will help you feel more calm. Sometimes ya just gotta use the "head" pills! We aren't perfect and sometimes life gives us more than we can handle at one time. Taking medications that will help us feel emotionally better sometimes is the key to surviving the "bumps". Explain your pain to your doctor using examples, not words. Like, "it hurts to button my shirt", or "it hurts when I breathe, my ribs are sore", "I feel shooting pain, or stabbing pain, or dull achey pain, or "I feel a lot of "pressure" here". Tell your doctor how you feel when you wake up in the morning. If it's hard for you do take a shower, or if it's difficult to do mondane activities, like washing dishes or combing your hair. Tell him/her about your "potty" habits, i.e. diahrrea, constipation, painful urination, cloudy or dark urine, anything regarding going #1 or #2. Tell him/her about caring for your children and their special needs. Don't leave out any feeling of pain or emotion. Don't wear any make up that day either. Pain shows in your face. Also most times people with Lupus have rashes and their face is red and flushed. So let your doctor see your face without makeup. None, not even mascara. Show off those dark circles under your eyes! Remember that this doctor does not know you yet, it is your job to make him/her feel how you are feeling as best you can. Don't mention your disappointment in the medical proffessionals that came before. Tell him/her that you are so happy that you finally have hope that now you can get the ball rolling to feeling better.

When is your appt? Friday after next right? I want to be sure I try and remember that so I can be sure to look on the boards to hear how it went with you. I wish you all the best. You already have shown your courage and your specialness by being mom to such special children. You'll get through this. Just remember it's just the begining. Things will start slow at first, maybe with more tests. And if it's true and you DO have Lupus, then the trial and error for the right treatment will begin, but at least you will be on your way to some "normality" in your life and hopefully some good pain relief. You've waited this long, you may need to wait a bit longer for some tests, but at least now you have something solid to work with. And yes, do take your blood test results with you and don't let them have them, tell them they can have copies. My other advice to you is, always try to get copies of every appt you have. Just tell the nurse or the receptionist that you want copies of the doctor's notes for that office visit. You may have to pay a couple bucks or you may just need to sign a piece of paper requesting the notes. And if time passes and you feel that you should have had the notes by then, call the office and remind them. Doctors usually have their notes recorded within 24 to 48 hours. Just always have a copy of the doctor's notes for every office visit. Believe me, sometimes what is said in the office doesn't always end up in the notes! You have a right to have copies of your medical records.

I'll be thinking of you dear. And look for "goldenwings" posts on the Lupus and FM board.

Hugs,
tk

Last edited by tkgoodspirit; 05-13-2005 at 10:26 PM.

 
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