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Old 11-25-2005, 10:12 PM   #1
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Unhappy Horrible ongoing pain...unknown cause

Hi,

Okay, I'll try to keep this as short as I can.

For about four months I've had these symptoms. Mostly it is pain. I have pain in my extreme lower abdomen on both sides. My pelvis, hips, and back also have severe pain in them. My hips are a big concern more and more because they are causing me so much discomfort and are so stiff that I can't walk normally..I have to pivot my legs sideways and I take short...quick steps to help increase my range of motion. I also am just generally weak, and have lost my apetite. I am having no problems with urination or bowel movements...although any use of my abdominal muscles (including using the restroom) hurts.

So far I have had blood and urine tests to rule out any urinary concerns, and also have ruled out ibs and a couple other bowel problems. I have had x-rays of my hips and pelvis...with no findings. I also have had tests for infections which came up negative. I went to the GYN where the doctor examined my uterus, ovaries, vaginal opening, etc. and found no abnormalities. I also had 2 pelvic ultrasounds. They found a small cyst on my left side..about 1 1/2 cm. They treated it and it has shrank...but the pain and discomfort is no better. I have seen three different doctors and they are all clueless.

The doctors gave me some naproxen sodium to help ease the pain when I need it...but I can't just keep taking it forever, so I thought I'd do some of my own research to see what could be causing this....but I'm still clueless. Any insight or advice would be great!

Thanks,

Vers

 
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Old 11-26-2005, 06:31 PM   #2
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Re: Horrible ongoing pain...unknown cause

Vers,

I can see where this would have you stymied. It seems like there are so many "systems" you have had checked, but so far nothing has fit.

Is the Naproxen helping you? If it is, that might be a clue as to what the problem is. I'm not sure how it works (that is something you can research -- try the list of drug definition websites in the resources section of diagKNOWsis.org). Then, depending how it works, it may give you a clue about what system is causing you pain. Whatever system that is, find a doctor who takes care of it.

Also -- you must have some idea that is stronger than another. Just because one doctor in one kind of practice can't determine the answers doesn't mean that's not it.

Let us know if these ideas turn up anything. Good luck to you.

 
Old 11-26-2005, 07:56 PM   #3
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Re: Horrible ongoing pain...unknown cause

Hi,

Thanks for responding.

Okay, so far this is what I've been working on. I did some research on naproxen sodium and it is a nonsteroidal anti-inflammatory drug. So it must ease inflamed tissue. It helps a little, so I must have some sort of inflammation going on?

Anyway, I've been doing a little research on endometriosis, and am going to see another doctor in a couple weeks to hopefully get that ruled out *fingers crossed*

I've also come across the possibility of Fibromyalgia...which is a scary option...but is sounding almost right on with my situation. Other symptoms which I didn't think could be anywhere related are there (like dizziness, TMJ, ADD symptoms, depression, etc.) So I'm currently doing some posting on there and doing some research on it....I don't want to jump to conclusions...so I'm making sure to do my research thoroughly.

Anyway, so far that's all I've been able to come up with.

Thanks again for the response.

 
Old 11-27-2005, 08:47 PM   #4
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Re: Horrible ongoing pain...unknown cause

Sounds like you're making some progress -- excellent.

You have a couple of things to look into now -- and I expect you feel a bit more empowered because you have a direction to take. Even if some of your findings are "scary" -- facing them, and being treated for them, is so much better than dealing with the unknown. Don't you think?

Good job! Keep us posted, Versailles!

 
Old 11-29-2005, 06:58 PM   #5
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Re: Horrible ongoing pain...unknown cause

Well, I finally got my doctor to listen to me about my problems. She said though most physicians don't even believe that Fibromyalgia exists...so that's frustrating, but at least I have her attention that I'm feeling really, really crappy. She prescribed me some Tylenol 3 to help me get through this bout of it. It is pretty bad this time for some reason.

Thanks again,

Vers

 
Old 12-06-2005, 12:27 PM   #6
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Re: Horrible ongoing pain...unknown cause

Hi, just an update on my health. I just got new bloodwork done on yesterday. They are testing me for Lupus, Rheumatoid Arthritis, my ANA (antigen facter), kidney function, mono, lyme disease, and some other stuff. She tested me for like eight things all together. Hopefully we'll get some idea on where to go soon. She also put me on Cyclobenzaprine to help me sleep, although it did the opposite? Wierd.

Anyway, just giving an update. Hopefully things will work out soon. I won't get the new tests for a couple of days.

Thanks,

Vers

 
Old 12-06-2005, 05:59 PM   #7
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Re: Horrible ongoing pain...unknown cause

Hi Vers,

Sounds like you're going through much the same as me I'm waiting for blood results, too and having an ultrasound on my thyroid on Friday.

It feels good to be getting/going somewhere with the testing but at the same time it seems like such a long road. When I think about the appointments that I have to make with the various dr's it almost gets to be too much. I'm already so tired and worn out just getting through a normal day is hard enough let alone researching and getting to the appointments.

I started on Trazedone last night to help me sleep and I had the same reaction.....didn't sleep well at all.

Anyway I just wanted to tell you that I know how you feel....hang in there.

JeanneO

 
Old 12-06-2005, 07:47 PM   #8
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Re: Horrible ongoing pain...unknown cause

Thanks Jeanne,

I think the most frustrating part is I'm only nineteen and have been going to doctors more than thirty or forty times a year with problems since I've been born, and I've already went that much in the last four months of this year. I already know I am hypothyridic, and have been being treated for it for about five months, but really don't feel any different, so I don't know what's going on.

I hope your tests go well too. Hopefully we can both get some results soon!!

Thanks for the response

-Vers

 
Old 12-07-2005, 09:05 AM   #9
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Re: Horrible ongoing pain...unknown cause

Vers and Jeanne,

I'm sure it must be frustrating for both of you -- all those tests.

Just a reminder to both of you that when the doctor prescribes a drug -- and THEN you are given a test -- the effects of the drug can mask the test results, and you may not end up getting the right answers.

Don't stop taking the drugs -- but do ask the doctor that has prescribed your tests whether the drug can affect the outcome of the tests.

Good luck to both of you.

 
Old 12-07-2005, 10:19 PM   #10
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Re: Horrible ongoing pain...unknown cause

Yes, thank you very much, luckily I didn't start taking the medicine until after the tests. I did get some of the results back though. It looks like Lupus is probably going to be negative. My rheumatoid factor was negative. I did however find that I am severely anemic. (normal is between 30 and 50, and mine was only 8.3 ! I also had a really high sedimentation rate...which doesn't give a diagnosis, but shows that I have some bad inflammation somewhere. But they don't know where or why yet. But they are recommending that I see a rheumatologist, and maybe get some sleep tests. I'll just have to see. I go back to see my regular doc on Monday...so hopefully I will know soon.... *fingers crossed*

-Vers

 
Old 12-27-2005, 12:05 PM   #11
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Re: Horrible ongoing pain...unknown cause

Ahhh, I'm sooo frustrated.

The doctors still don't know what's wrong with me. I've been having so much chronic pain that I've been taking several 800 mg. ibuprofen a day, and sometimes tylenol 3. It is so frustrating to be in so much pain and discomfort. I've been taking iron supplements for quite some time now, but I am still very, very weak and feeling generally lethargic. I have also been having very, very frequent heart arrythmias...but have had tests and nothing is physically wrong with my heart. EKGS, ultrasounds, all is normal...so it's frustrating.

Anyway, if anyone else has any ideas to help, it would be great. I just don't know where to go from here.

Thanks,
Vers

 
Old 12-27-2005, 07:03 PM   #12
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Re: Horrible ongoing pain...unknown cause

Vers,

I'm so sorry you can't get answers. The only thing I can suggest from here is that you get ahold of all your test results, find another doctor who hasn't been at all involved to this point (and who isn't necessarily recommended by the doctors you have already seen) and go to someone brand new. I'm not sure from your posts which kind of specialist you should see, but trust your instinct on that one. You mentioned that you are in pain, but I don't recall that you've said what hurts -- or which body system might be afffected (maybe you don't know?)

Prior to doing that, start asking anyone you know who has been in pain before -- even older folks (I remember you are very young). Try to get recommendations from others who have experienced the kind of pain you feel, and hopefully are now pain free, and see if you can get an appointment with whomever that person's doctor is. Also, consider finding a doctor who deals with pain at one of the larger hospitals that might not be where you live.

Keep us posted. I hope this resolves for you very soon.

 
Old 12-27-2005, 07:25 PM   #13
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Re: Horrible ongoing pain...unknown cause

Thank you very much for your response MisDiagnosisMOD.

My pain is very generalized. I have chronic pain almost everywhere, although the worst is in my back, hips, and legs. I also have symptoms of TMJ and migraines (sometimes sharp, shooting pains in small regions of my head). As I said in one of my earlier posts, my Sed. rate is high, which means I have inflammation going on somewhere. I just don't know where. My kidneys and liver are doing fine, as is my immune system (that's what the tests showed), and my bloodwork is normal except for the high sed. rate and anemia.

I actually know someone who has fibromyalgia. I want to talk to her about it, I do really hope that my problem is something more treatable though. since no one really knows the cause of fibromyalgia, it is almost impossible to cure...or treat in that case.

Anyway, thanks again for your response, I'll try to keep you updated.

 
Old 12-28-2005, 05:22 AM   #14
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Re: Horrible ongoing pain...unknown cause

Just a thought here but has any of your docs ever thought that this all could very well be stemming from a problem along the spinal column somewhere?The type of symptoms you have described along with the inflammitory type of pain could very well indicate a spinal issue such as a herniated or compressed disc or a host of other possibilities inside the column or in the actual spinal cord itself.you REALLY need to have an MRI done as soon as possible to either rule in or rule out this area.it appears you have been put thru every other test known to man without any success.Now you need to explore this entire area,or at least from the lower T spine on down.i really do think that from what you have described that this could be the culprit.please just ask one of your docs to refer you for that MRI.i really am suprised that none of your docs have done this yet,or if they did you did not mention it.but all of your symptoms DO fit with a possible spinal issue and it DOES need to be looked into as a good possibility.it appears that everything inside of your abdominal area has been thoroughly explored without any real findings,so now it is time to look at the flipside.I hope they find something soon so you can get out of this misery you are currently in.please keep me posted,K? FB
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Old 12-28-2005, 10:01 AM   #15
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Re: Horrible ongoing pain...unknown cause

Thanks for the response friend,

I do have a back condition, so that could be a possibility. I have an exaggerated curve of my spine. Rather than being a slight curve, it is more like an S (not quite that far bent, but definitely curved more than normal). I am only nineteen, but have a family history of back problems, and my own history of developing the hereditary problems earlier than most.

I am concerned it may be beyond that though, because I have problems all-over, although ruling on a back condition could help get rid of the pain and weakness issues, there is still a lot more that I don't believe could be caused by my back (at least I think so).

Thanks again for your response, I'll keep you updated!

-Vers

 
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