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Blessed4life
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/30/2008 9:02 PM (GMT -7)   
I'm new hear and I am desperate for help.
 
I have  been dealing with a host of symptoms for about many years now.  It all started with two incidents while at work: (1) In 2002, I was at work and couldn't hold anything.  My hand wouldn't hold anything, not even a pen for several hours.  (2) In 2003, after a nice Spring walk after lunch, I returned to my office to experience pain in my chest, sudden all over extreme fatigue and ended up in the ER.  I was referred to a rheumotogist in 2002 and have been seeing him for years now.  Unfortunately, neither he nor the other neurologit I have seen seem to know what is going on with me.  Meanwhile, more and more symptoms have shown up:
 
Painful joints - ankles and feet (especially in the morning), wrists and hands, knees, shoulders, and sometimes my hips

Muscle pain - all over, but especially my arms and legs

Muscle Spasms, Tingling, and twitching - all over (even at times in my vaginal area)

Chest pain upon deep breathing - this has happened a few times but not consistently over a long period of time (day or two)

Sensitivity to the sun - I dread the sun. Feels like it is burning when I am in direct sunlight. Very unusual since I used to love laying out in the sun.

Head Aches - sometimes I get pains in my head that fee like I have been hit with a blunt object. The pain comes from no where and is unexplainable.

Fatigue - I get very tired by doing the smallest things. Many times when I come home from work, I have to go straight to bed. (I also have nights where sleep won't come)

Involuntary movements and jerking of muscles in my legs, arms, face, fingers, toes, ankles,

Memory problems - I forget words, names, what I was just about to do.

Stomach pains - Sometimes, for no reason, I feel like my stomach is being ripout out from the inside. The pain comes and goes with no rhyme or reason

Bladder - for about two months now my bladder has been wacky...For a few weeks I felt like I needed a catheter because it felt like I had to urinate 24 hours a day. The past few weeks I have gone all day without having the urge to go at all. I go just becuase I figure my bladder must be full.

Bowel - For about a year I have been battling with bowel problems too ( I haven't mention this to the dr becuase I just realized I never remember to tell him). I often cannot make a bowel movement unless I message myself after urinating and even then I have to concentrate like I am telling my muscles to work with me. The strange part is that when I do feel the urge to urinate, when I wipe myself I notice that I have had bowel leakage as well. I think the leakage happens before I go to the bathroom, because I also have itching like there is a rash in my anal area.
 
I was taken to the ER this past Monday after experience chronic fatigue all weekend (slept about 36 hours between Saturday and Sunday).  Late Sunday also started experiencing chest pain.  The ER doctors called my rhuemy and was told that he diagnosed me with Fibromyalgia.  This was news to me since he had always only said, "you have a chronic pain condition and you'll never be your old self again".  This was just what I wanted to hear.  Anyway, the ER doctors were happy with his diagnosis.  They said that my symptoms pointed to something more than Fibromyalgia.  They gave me the number to another rheumy.   Since I have family history of lupus (my mom's sister) and have done extensive research and have found that the rash over my cheeks, nose, and forehead is getting worse (my rheumy wouldn't even discuss the rash), I want to see a rheumy with Lupus experience.  I live in Baltimore.  Can anyone recommend a good Rheumy in Baltimore?  Got any advice.  The ER doctor has put me on Prednisone (just for a week) which I am now taking in addition to Lyrica, Cymbalta, Calcium and Vitamin D in addition to my Synthroid (hx of Graves Disease which was treated with radiation) and Albuterol for asthma.
 
Blessed

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/30/2008 9:07 PM (GMT -7)   
I just wanted to say welcome. I hate to hear that you are having so many issue. It's so hard to find a good rheumy, but don't give up! Hang in there. You have come to a good place for advice and compassion. God Bless You, Judy

Blessed4life
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 4/30/2008 9:11 PM (GMT -7)   
Thank you, Judy

Blessed

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/1/2008 8:13 AM (GMT -7)   
A good way to find a local rheumy who is lupus-aware is to visit the Lupus website at www.lupus.org. Then look for a chapter in your area. Give the local chapter a call, and ask which doctors are active in their group -- that is usually a good indication of a dr that is not only lupus experienced, but also one who really cares.

Good luck & keep us posted,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Post Edited (Lynnwood) : 5/1/2008 10:24:24 AM (GMT-6)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/1/2008 8:58 AM (GMT -7)   
Welcome to the forum Blessed!!

You might also want to include a GI doc (gastrointestinal) in your search.

Your urinary/bowel issues sound like the *might* be a fistula. The bowel can develop a tunnel between itself and another part of the intestines, vagina, bladder, etc. When this happens poo can move or get stuck in the fistula/channel.

I don't want to scare you, but DO make sure to mention this problem to your doctor and consider a GI at least to look into it.

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/1/2008 2:10 PM (GMT -7)   
hi blessed,

Sorry to hear you are in such a state. I hate forgetting to mention things at my doctor's appointmens.

It really is important to get in the habit of right it down. And while you are waiting to be called in take it out and hold on to it. I used to be embarrised to open the list infront of the doctor. But most doctors (if they are worth a pinch of salt) are happy you made the list.

They need to know everything, when they are dealing with a whole bunch of sypmtoms.

I also keep a list of my medications and the doses in my wallet. When you see a new doctor they like to know what you are on, and it's handy incase of a medical emergency. I can remember what I'm taking but i have trouble remembering how much of what.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/1/2008 3:58 PM (GMT -7)   
Hi Blessed, I am sorry you are having so much trouble. I remember how frustrating it was to get a doctor to listen to me, finally I found one on the 3rd try. I agree with the others you definitely need to see a GI doctor to rule out any other problems but you should also mention the GI issues to your new rheumy too. I have a lot of GI problems which are related to lupus and my 3rd rheumy is the ONLY one who put it all together but I had also been thoroughly check out by my GI. He knew something was wrong but couldn't put his finger on it.

What tests have your doctors ran? I pray you find a rheumy that specializes in lupus and can figure out what is causing your problems. Take care and keep us updated on how you are doing. Also feel free to ask more questions.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/1/2008 4:21 PM (GMT -7)   
Hi Blessed,
   The others had some great advice for you so nothing really for me to add. I just wanted to welcome you to the forum and wish you the best with finding a good Rheumy. Some of us have been through a few rheumy's to find the right one. Hopefully, you will be lucky right away. Take care and keep us updated. You will be in my thoughts and prayers.
                                                          Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/1/2008 5:34 PM (GMT -7)   
I live in montgomery village md-about an hour or so outside of baltimore. My rhuemy is awesome and she has experience with lupus. She also practices in Wheaton which I think is a little closer to your area. I will attempt to edit my profile to include my email address so you can ask for her name if you would like it.
Sj

TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 5/5/2008 11:08 AM (GMT -7)   

HI,

I don't live in the Baltimore area but just wanted you to know that we share a lot of the same symptoms. I do not have bowel/urinary or chest problems but everything else is pretty much what I have been experiencing for almost 2 years now. My rheumy did diagnose me with Lupus even though my bloodwork provided both positive and negative results. It's so hard dealing with all of this isn't it? Just keeping track of symptoms is often too much.

I am glad you are seeking a second opinion. I hope you find a new doc that will look at all the symptoms, test apporpriately and then made the diagnosis quickly so you can begin treatment.

Ti

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