It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lupus Message Board

New here...and so fed up

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 02-21-2009, 07:31 AM   #1
Junior Member
Join Date: Feb 2009
Location: Taber AB
Posts: 14
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 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.

Sponsors Lightbulb
Old 02-21-2009, 10:29 AM   #2
Join Date: Jun 2008
Location: Memphis TN
Posts: 469
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, 09:14 PM   #3
Junior Member
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, 03:06 PM   #4
Angel MJ
Senior Member
Join Date: Apr 2009
Location: Johannesburg
Posts: 221
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, 09:47 PM   #5
Senior Veteran
Join Date: Feb 2004
Posts: 5,719
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!)

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Hello I am new here Cee10 Cancer: Lung 14 12-09-2006 09:30 AM
I'm so confused and really need help here kellie2 Blood and Blood Vessel 11 10-06-2006 10:23 AM
Hi! New Here...Not That I Really Wanna Be Longing4MyMom Alzheimer's Disease & Dementia 14 02-06-2006 07:47 PM
Need help/opinions here!! feelbad Pain Management 4 11-13-2005 03:14 PM
Does anyone here REALLY Understand? Samantha317 Depression 746 10-21-2005 09:33 PM
What is it that we really need to do here in order to get back on track? Casman Relationship Health 12 04-27-2005 08:04 PM
New Here lkavaloff Pain Management 16 01-26-2005 09:35 AM
Shorline anyone here?? lkavaloff Pain Management 2 01-21-2005 08:07 AM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 09:14 AM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!