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Old 02-21-2009, 08:31 AM   #1
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Smashing HB User
New here...and so fed up

I have spent so much time here going over so many posts. I can't seem to find any answers to my questions...so hopefully a post will help. I apologize in adavnce if it's too long...

In 2000, I began to have bouts of , I don't know what to call it, sickness.which lasted for about a week. Always the same starting out with severe anxiety, sleeplessness, which escalted over the week until I would have somewhat of a meltdown then it ended with nasal sores, dry red eyes, chronic fatigue and severe pain in my right abdomen as if something was swollen. As I said this lasted about a week and once over I would feel fairly healthy again until the next episode. Appr. every 2-3 months. In September 2000 out of the blue I developed severe joint pain and loss of movement in my hips? leg/hip joints which has never gone away.

This went on for the next few years with no change. In 2005 other things began happening. Thyroiditis, 2 extremely bad bouts in 9 months, petiachia(sp) on my forearms, migraines, hair loss added to all the other issues.

In December 2006, I got extremely sick with a bit of pnemonia(sp) and a severe pain in my right kidney area, fever, fatigue etc. which seemed to replace all the symptoms I was having in prior years. Now whenever I got sick it was pain in my kidney area, extreme fatigue, pain in my leg and backside muscles, leg and foot swelling, which ended in a sinus migraine and then back to feeling better for a while with just achy muscles.

In spring of 2007, my doctor diagnosed Fibromyalgia due to the pain in my muscles but couldn't find anything for all the other issues. I began taking Tramacet for pain.

The bouts of sickness still come and go, I am amazed at how the symptoms change, I haven't had an anxiety attack in a year and I was so grateful for that I thought I could deal with Kidney pain or anything else that came along until now.

I December 2008 I began to have severe facial/sinus pain, sores in my nose and headache which seems to have moved down into my teeth. I have just come out of a bout of sickness with the migraine etc. but the aching teeth won't subside.

My current doctor asked me to try Lyrica one month ago saying he wanted to stop taking the one or two Tramacet/day. I have to say I began to feel better after about a week and a half. I noticed that I wasn't so sick in the morning. Which has been a huge problem over the last year or so. I wake up sick EVERY morning. Fluish, feverish, so much pain all over, but I take a Tramacet and I'm good to get moving in a 1/2 hour or so. So the feeling better in the morning was huge! But I began to have stomach troubles bloating and swelling until I felt I couldn't breathe. I was getting so sick until last weekend I stoped the Lyrica for 6 days until I could get through this bout of sicknness. Had a migraine Monday and the swelling went away somewhat.

I don't beleive I have Fibromyalgia, my doctor won't refer me to a rhuematologist without concrete tests and if I do get an appt. it will be 12 to 18 months to get in. I guess I have just been looking for some help in trying to feel better on my own. Or maybe just to rave like a lunatic for a bit!

I have been tested for everything, since the kidney pain began I have always had large amounts of blood in my urine which my doctor can't explain,

Sorry to go on so long, I am just so tired.

 
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Old 02-21-2009, 11:29 AM   #2
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Location: Memphis TN
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sophie56 HB User
Re: New here...and so fed up

Find a doctor who will refer you to a rheumatologist
. Good Luck.
Sophie 56

 
Old 03-19-2009, 10:14 PM   #3
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Join Date: Mar 2009
Posts: 11
Cyberbrat HB User
Re: New here...and so fed up

You definitely should demand referrals. I am sorry you feel so horribly and have for so long. You must be exhausted. Take care of yourself and I hope you feel better. I started to get assertive after being 'dismissed' for so many years but having my quality of life slip away and physical damages from being ignored was too much to take.

 
Old 04-05-2009, 04:06 PM   #4
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Join Date: Apr 2009
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Angel MJ HB User
Re: New here...and so fed up

hello there ... i am sure you know you are NOT alone

personal experience : a good doc (rheumatologist) & meds do help ... but that too is trial & error ...

also listen to yourself ... no-one knows you like you do
one day at a time & i believe if you can't do it today ... maybe tomorrow

 
Old 04-06-2009, 10:47 PM   #5
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: New here...and so fed up

Smashing, hi & welcome. I'm just a patient, obviously. But your comment about severe kidney pain & blood in urine jumped out. I *think* the kidney "filtering" damage caused by lupus is described as asymptomatic, meaning one doesn't feel pain.

But OTHER kidney & urinary conditions (seen in people with & without lupus) could produce pain, fever, nausea, etc. For example: infection, UTI that moved up to the kidneys, stones, interstitial cystitis, and (I suspect) many other problems I know nothing about...

It's not normal to pass blood, or to feel such pain in the kidneys. Can you get your kidney/urinary symptoms looked at again soon, meaning NOW? Please let us know how you're doing. I hope you get some answers & help fast. GOOD LUCK! Sincerely, Vee (P.S. I'm not saying a rheumatologist is a bad idea. I'm suggesting you see OTHER specialists, too!)

 
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