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Can anybody please help me? Medical question...

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marinemommy

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Discussion starter · #1 ·
I am desperate for someone to help me. I will try to make this brief because I don't know how long I can sit here...then I will try to fill in later with anything I have left out.

I have been in constant pain for over a month. It was inconstant for a few months before that, but over the last month it has gotten increasingly worse until it became unbearable. I have just been through a nightmare in the hospital and I feel like I will be angry and scarred for a long time.

The pain started over my right flank...right where my kidney is...and is now still there but also in the front over the place where my liver/gallbladder are. They originally thought it was my kidney but now no one has any idea what it is. They are thinking it is the bones themselves that are causing me pain. I have had several upper abdominal ultrasounds, a pelvic ultrasound, a CT scan with contrast (the stuff you drink and the stuff that is shot into the vein), many many bloodtests, daily urinalysis, many x-rays...EVERYTHING is negative. I look completely healthy. I have gone from taking oral tramacet to oral percocets, baclofen ( a muscle relaxer), and naproxen. When I got worse instead of better I was hospitalized on Monday and given IV morphine. Apparently my veins aren't very good for getting IV's so I was changed over to subcutaneous morphine then up to sub-q dilaudid, through something called an ISCI. Nothing has taken the pain away...it always come back. I had to fight with the nurses every day to get my pain medication because they all treated me like I was some sort of druggie, or a wimp. I am a professional! I'm a registered nurse...I'm one of them! I feel so degraded.

I have given birth at home to 4 babies, with no pain medication, one of them was face-up which causes a lot more pain. I have a high pain tolerance...I would do that again in a heartbeat over what I am living with now.

I had a surgeon come into my hospital room the other day. I had just asked for more medication, so I was already in pain. My doctor wanted her to rule out bowel obstruction, which she did. She decided to inject long and short acting anaesthetic into the area in the front where it was hurting. I cannot explain to you how excruciatingly painful that was. I have always been able to control my body and emotions when I am in pain, but when she did this it hurt so horrible that I started sobbing and hyperventilating. Of course with my ribs bouncing up and down she couldn't do anything so she had to wait, holding the needle in there, until I could calm myself. Then as soon as she touched that sore place again with the needle, it would start all over, and she would have to wait until I could calm down again. This happened 3 or 4 times...I can't remember. Afterwards, I couldn't stop the tears for maybe half an hour. It took the pain away for maybe ten minutes and then it started to come back. She seemed to think there was definitely some inflammation in or around my ribs but has no clue why. She says she can't help me. She thought I should possibly be referred to a pain specialist, and be put on steroids, but my doctor doesn't want to do that yet.

My doctor agreed to let me go home yesterday, now that all the tests are over, because I have 4 children who need me around. I am home, taking long-acting morphine twice a day and short-acting every 1 to 3 hours as needed. I am still in pain. I am so desperate to get rid of this pain. My doctor assures me that I will become addicted to this stuff and that I will have to go through a horrible withdrawal period. I have never liked taking anything more than an advil.

If I get up, the pain is worse. In the hospital I could go all night without more meds because I wasn't moving. Sitting here is hurting right now, but I want to get your help. Getting up and actually "living" hurts so bad that I have to lay down again after half an hour at the most. I hate feeling this way, and I hate the thought of living this way indefinitely.

Please, someone, anyone...help me figure out what this is! I have another doctor's appointment on Tuesday. Until then I have to keep careful notes on how much medication I take.

Is there some kind of bone infection that does not show up on blood tests and x-rays? We are definitely looking at something to do with the bones. I have other joint problems that I've had since I was pregnant too, and now they're starting to think it's all related.

I will try to get back here later and answer any questions. I'm not feeling well at the moment so I have to go...the morphine makes me sick too.

Thank you...
Amy
 
#2 ·
Amy,

You're in my prayers! With the non-specific - just general area of your pain - have they considered some sort of nerve damage/pinching? Or tried neurotin or such.

It sounds more like a nerve issue with the non reponse to some of the pain meds..

Please keep us informed.
 
Discussion starter · #3 ·
Thank you. I wouldn't say that I don't respond to the pain meds. They do help. But when they wear off, the pain comes back, and I can't function. And the pain does mostly go away when I am lying down, especially with a heating pad. Until the meds wear off. Then I can't find a single comfortable position. I feel pressure under my ribs. It started a few months ago where once in a while it felt like there was a foot pressing against my ribs. If you've ever been pregnant, you'll understand what I mean. Now there is constant pressure. When the pain comes back, I can't lay on that side. When I lay on my back the pressure presses against the front of my ribs. I seriously thought my kidney must be enlarged but I've been assured that all of my internal organs look fine. And if you press against my ribs, or just touch them lightly, no matter how doped up I am, I cry because it hurts so badly.

Oh, and I'm not the type that cries easily. I can take a needle without flinching, even one put directly into a wound, for freezing before suturing. I've basically been in pain for over a year and a half because I've had problems with my hips since I was pregnant with the last baby. I rarely take medication for that. And, again, they have no idea what's wrong with my hips either. I have an appointment with a rheumatologist but that's not til January. (This is Canada).
 
#4 ·
Take 2 tablespoons of apple cider vinegar twice a day and call me in the morning haha. you can add a packet of equal or splenda to it to taste better. Sort of a cure all pain releiver - quite incredible really. I can't see how it would hurt ya at this point. Your in my family prayers too.
 
#5 ·
I'm sorry!

I wish I had an answer for you. You are definately in my thoughts! I wish ya the best! My only advice is to not let all that pain cause you to be depressed... it'll only make it worse. Surround yourself with the things you love, that make you happy and NEVER give up! Keep on those doctors. I know you have to wait a long time for your doctors appointments and such but it could be worse... you could have that HUUUUUUUGE bill too! Good luck to you and please keep us informed as best you can.

Please take care.

-Scott
 
Discussion starter · #6 ·
Thank you Scott. Today's actually been the best day yet. The long-acting morphine seems to be keeping most of the pain away and I haven't had to take any of the fast-acting yet today. I've been sleeping most of the day though, and not very active like the doctor wants me to be. The pain is still there if someone brushes past me or the baby jumps on me :) I can't even pick him up without pain.

I felt that I was starting to get depressed in the hospital, which is why I pushed to come home. The attitude of the nurses was pretty condescending and I couldn't get my pain under control because the nurses were too busy to bring my meds when I needed them. It's so much better being at home. I've actually taken less meds because I'm not worried about when I will be able to get them again. I'm a lot more comfortable at home. But I'm very sick from having the morphine in my system constantly and taking Gravol (anti-nauseant) which adds to my sleepy, drugged state. I even fell asleep in the bathtub today, and I was only there for 15 minutes.

At this point, I'm not looking for pain control suggestions. I'm asking for anyone who has ever heard of anything like this...any professionals or not who have any idea what could be causing such horrific pain. Could it be a hidden infection?
 
#7 ·
Pain

Amy,
My husband thought I would be interested in your thread. I'm a nuclear medicine technologist. We do an exam called an Indium White Blood Cell Scan. It involves taking your own blood and adding a radiactive tracer (Indium) to just the white cells. Then this is reinjected back to you and you get scanned 4hrs and 24hrs later. We usually do this test for fever of unknown origin but with the location of your pain this test may not be helpful due to your overlaying liver(the white cells are also taken up in the liver). Did you have a bone scan while you were in the hospital? That would show degenerative changes, arthritis, fractures or even metastatic disease in your bones. You are in our thoughts and prayers. Keep us posted.
Michelle
 
#8 ·
Rsd

Have you looked into RSD. It's usually caused from trauma. It can even be trauma from a year or two ago. It is not super uncommon but is often misdiagnosed. It is a neurological condition therefore if you have not been tested for anything like that, which in your description it doesn't sound like it, it may be something to look into. Many people with this disease go through a tough time getting it diagnosed and are often told that it is "in their head". The bad news about this disease is there is no cure and the pain is very hard to manage. This sounds alot like what you have, so hopefully for your sake you don't have it. But, check into it. Hopefully this helps. Take care and try not to get too discouraged.
 
Discussion starter · #9 ·
Michelle...I was just researching online last night and bookmarked a site that mentioned the wsb scan. I'm going to mention it to my doctor on Tuesday when I see him. It can't hurt to try it; I'm just not sure if that test is available here or not. I had a bone scan done about 6 months ago and it showed nothing. My doctor said he is going to book another one for me. That will probably take a couple of weeks though, since I've been discharged from the hospital. They've been throwing around the term "transient osteoporosis of pregnancy". It was mentioned by a bone surgeon that I saw months ago but nothing came of it. I had an MRI to look for it then, but it didn't show up. Now my doctor wants to look into that some more. He also wants to refer me to endocrinologist. One of the blood tests that he took won't have results until early next week...I think that one was looking for certain hormones that can cause bone deficiencies.

3mm3...I'm going to look that up and see what I can find out about it...

Thanks guys...these are the kinds of suggestions I am looking for. I don't care if it's a terrible illness...if I already have it it would be nice to know the name. Maybe then I will be treated fairly.

tankdude said:
Amy,
My husband thought I would be interested in your thread. I'm a nuclear medicine technologist. We do an exam called an Indium White Blood Cell Scan. It involves taking your own blood and adding a radiactive tracer (Indium) to just the white cells. Then this is reinjected back to you and you get scanned 4hrs and 24hrs later. We usually do this test for fever of unknown origin but with the location of your pain this test may not be helpful due to your overlaying liver(the white cells are also taken up in the liver). Did you have a bone scan while you were in the hospital? That would show degenerative changes, arthritis, fractures or even metastatic disease in your bones. You are in our thoughts and prayers. Keep us posted.
Michelle
Click to expand...
 
#13 ·
Hey having just spent a week in the hospital in october i must say the pain sounds kind of similar to my perforated stomach ulcer. Although if you are able to tolerate that even remotely i am incredibly impressed. Mine though showed up on the abdominal xray because of free air in the area. Does the pain spread up in your abdomen at all?

Hope you feel better,
mike
 
#15 ·
my father is having similar pains to you for a year plus or so, but on a much more mild scale. they were looking towards gull bladder, removed it, and still has the pain and no where to go. he takes vicodin for the pain, but its still there. hes a heavy set guy 300, and had a lower back injury early in his 20's, and a motorcyle accident in his 40's. i would look into nerve specialist as that what they concluded so far.
 
Discussion starter · #16 ·
Hi guys...sorry I didn't realize there were more replies on this thread. So far there has been no change, though I do have the pain mostly under control. I have a 12 mcg fentanyl patch that's changed every 3 days and I use tramacet for breakthrough pain. That keeps the pain in a 0-2 range most of the time, except when it is touched or I move a certain way. I am only sick in the morning now, for the most part. So at least I've found a way to live with this strange illness. I can only pray it doesn't get worse or crop up in some new area of my body.

They seem to have have ruled out spine, gallbladder, lung and stomach issues. It's funny because in the front the pain is very surface. It seems to be located right along my ribs. To touch that area even lightly brings a lot of pain. The pain in the back, over my right kidney, is not so tender to touch but is a deeper "sharp ache". If it is examined it doesn't hurt when prodded, but aches afterwards. The doctor hasn't touched it for a while because he doesn't see the point in hurting me more...it won't give him any more answers. They definitely think this has something to do with my bones themselves, and is related to my hip problems that I've had since I was pregnant. I also mysteriously injured my wrist a couple months back and had to use a brace for 2 weeks. That wrist still isn't back to normal but it's useable.

I have a bone scan coming up next Friday and then the rheumatologist in January. That's it. I still have no idea what this is. I am starting work again tomorrow. I am going to start with a few patients and work my way up to my full schedule if I can tolerate it. I'm getting along alright at home with the day to day tasks, so I don't see the point of waiting any longer to go back to work. Funds are pretty tight, especially with Christmas coming up.

I keep you informed if anything new pops up.
 
#17 ·
MM - When you say they ruled out the gallbladder, exactly which test did they do? I was having similar pains in the front, along the ribs on the right side and lower on my right side. Dr's and Surgeons kept fighting over whether is was the gallbladder or not - no stones, no sludge. They did a hydascan not even sure if I am spelling that right but the first part came up normal - gallbladder looked fine, when they do the second part they use some kind of enzyme to make it contract like its supposed to do and mine did not contract only had 5% usage. It was taken out last Tues and I have had no pain since.
The test is some kind of Nuclear Medicine scan. Don't know if this helps but I pray it is something as easily fixed as this was. Good luck.
 
Discussion starter · #18 ·
Hmmm...dragonlady...I will mention that to the doctor next time I'm in. The CT scans were all clear so they ruled it out...plus the fact that they prodded my abdomen carefully and though the pain is right above where my gallbladder is, it is the rib itself that is very tender.

I'm still not completely convinced it's not an organ problem of some kind. I get mysterious sharp spasms in that area from time to time in addition to the constant pain over the ribs.
 
#19 ·
When I had gallbladder problems, my rib right above it hurt like heck.. It was also tender to the touch. (my rib that is) Also had that pressure feeling like when I was pregnant and my son was pushing on my ribs. I also had back pain.
Alot of your symtoms sound very similar to what I went through. Not quite as severe though.
Do you ever get pain in your gut, right under your sternum? Like somebody punched you?
I hope that you find out what the heck is going on.. Good luck and get better soon... Sincerely, Margo
 
Discussion starter · #20 ·
Yeah, maybe I will keep pressing him on the gallbladder issue. I don't notice that it hurts any more or less with what I eat.

And no, I don't ever have stomach pain or sternum pain. It just seems odd that I would have pain at the same time in the area of my kidney and my gallbladder. And they are two different kinds of pain. It was the "kidney" pain that started first but the other pain, in the front, has been the worst for the past month or so. When the pain gets bad, it feels like pressure, like someone is pulling on my ribs, about to break them. I could have sworn that something was enlarged in there, but the doctor assures me that everything looks fine.

I think I will be looking into alternative therapies in the near future. This is getting ridiculous. I started back to work today. I had only one patient and already the pain is worse than it had been over the last week or so.
 
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marinemommy
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