New.....And so very frusturated

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JD19
Regular Member


Date Joined Oct 2007
Total Posts : 31
   Posted 10/16/2007 6:17 PM (GMT -7)   
Hello all. I've been lurking around for a few weeks now and i thought it was time to write something. For the past three years ive been sick on and off (sometimes out for a week not being able to do hardly anything). I would always go to the ER because i'd be in so much pain in my abdomen and they would do tests and never find anything wrong. Since September things have REALLY been weird. I started taking my temp everyday and when i wake up my temp is usually 97.8-98.3 but it always goes up to 99.5-100.1. I also have this awful headache that is on the back of my head. Such an odd place to have a headache. And here are the other things that have began to happen:
-dizziness/ feels like room is spinning
-trouble with my memory (calling a friend telling her i am coming right over to pick her up to go to the mall and then forgetting about her and just going to the mall for example)
- Nausea (almost constantly)
- Upper abdomen aching/dull pain with occasional SHARP stabbing pains on the right upper abdomen
- Feelings of tightness in upper abdomen
- Sharp pains in knees, elbows, wrists, fingers and toes but not all at the same time. They alternate throughout the day (this is my least favorite symptom......it hurts!)
- Weight loss (lost 20lbs since july) without really changing my eating habits/diet
- Chills randomly throughout the day
- Sharp pain in chest when i cough
- Feels like it takes a little extra effort to breathe/ chest feels tight
- Occasionally fatigued

I think thats it. Anyways, i'm going to the doctor tomorrow but what do you guys think? I've been sick for a loooooooooong time and everyone always tells me im a hypochondriac. I called my parents tonight (i'm 22) to tell them whats been going on and they just brushed it off like "oh your just stressed out and making it worse then it is". Soo frusturating! I know i'm not imagining this! It is very real and i'm so upset that nobody believes me because the doctors never find anything! Everyone thinks that I make it up or something. Its ridiculous. And the more i read your guy's post the more i think "i feel like that too!". I'm not sure if lupus is what i have, but i think its possible. What do you guys think? Any other suggestions would be fabulous!! Thanks guys

Jana

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/16/2007 6:32 PM (GMT -7)   
Hi Jana, welcome to the world of autoimmune disease and people who gett what you are saying and feeling. Yes it sounds like you have some thing going on. It can take forever. Actually you have alot of the same symptoms I have and I don't have Lupus I have and A/I in my liver. but so symptoms are overlapping and so many A/I's run together. Unfortunately you have one other symptom that you didn't mention. It's called "but you just don't look sick" Our families are so good at denial. Well that is really true there are people here who have saints for family members but not too many of them. `I just really wanted to say welcome to the group. Give your doctor a chance to figure things out. It can take an incredibly long time. write out of list to take with you. take your temp 3 times a day and write that down too. Don't count on rembmering so bring paper and pin with you.
Good luck tomorrow and again welcome to the group
carol
God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


JD19
Regular Member


Date Joined Oct 2007
Total Posts : 31
   Posted 10/16/2007 6:39 PM (GMT -7)   
Carol
Thank you so much for writing to me. Its amazing how one person can make you feel so much better. Thank you thank you thank you. I wrote down all my symptoms and when they started so i'm ready to go. And i'm prepared to be in for the long haul here. I've already gotten the run around so bring it on! I've read so many of you on here how it took years to find out whats wrong. I'm guessing i should expect that too. However most symptoms you guys have i experience too so i hope its ok that i come here even though I dont have a diagnoses!

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/16/2007 6:49 PM (GMT -7)   

I had to go back and re read what I wrote. I had so many type-o's in there I am amazed you understood it. LOL. My brain is taking the day off. Or at least this particular hour. There are a lot of people here that are still waiting for a diagnosis so don't feel alone. There is a story here called the spoon theory that is suggested ready for everyone who has family that doesn't get it. Unfortunately I don't have the link but I am sure someone here will give it to you real soon. Let us know how your appt: goes tomorrow.

hugs

carol


God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/16/2007 7:03 PM (GMT -7)   
Hi Jana!  Welcome to the forum!
 
I see you got a nice welcome from Carol . . . I agree . . you do have something going on.  This disease is really hard to diagnose or guess at because it mimics so many other diseases.  I'm glad you'll see the doctor tomorrow and so glad you started posting girl!!
Feels better just to talk about, doesn't it??  
 
There are some really good suggestions from all the members here that are listed in one of the posts in "Lupus Resources" . . . there is a link at the end of my signature.
The Spoon Theory, that Carol was talking about is at   www.butyoudontlooksick.com . . . check it out!!  It is well worth the read and it may help others understand what you are feeling.
 
I hope you'll give us full details when you return from the doctor tomorrow!!
 
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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/17/2007 4:30 PM (GMT -7)   
Jana, I don't really have anything to add to the wonderful information that the others have given you. I just want to add my welcome and to let you know you are among people who truly understand the frustration of knowing that something is wrong with you but docs can't pin point what it wrong. Sometimes it can take a while for docs to figure out if you have lupus or if it's something else.

I'm sorry that people are giving you the message that you are a hypochondriac - so many of us have been through that and it can be really upsetting. Hang in there and know that we are here for you.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/26/2007 8:06 PM (GMT -7)   
Hi Jana . . . I saw your new post, but I was wondering what happened at your Dr. appointment. I also wanted your other symptoms to show so others would kind of know your background when they answer your new post.

Any bad headache that is worse than you've felt before or very different should be checked by a doctor. Most often it is nothing, but if you suspect lupus, you could also have APS which causes thick, sticky blood and can cause a stroke and other major problems even at a young age. Better be safe than sorry.

Keep us posted!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


JD19
Regular Member


Date Joined Oct 2007
Total Posts : 31
   Posted 10/26/2007 9:46 PM (GMT -7)   
I went to the doctor last week and basically he told me he had no idea what was wrong with me and was going to refer me to "internal medicine". I'm not sure what that means but they still havent called to tell me when my appointment is so i think i'm going to make an appointment with my gp. I cant take it anymore!!!! I need answers. And the more i keep reading your guys posts the more i find myself saying "yeah thats just how i feel! " or "yeah i have that happen". Hopefully someone will be able to tell me something! But yes Rosie i think i will take your advice and if this headache gets any worse ill make a visit to the er. thank you for the advice! I really appreciate it!
Jana

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/27/2007 7:49 AM (GMT -7)   
Jana, a referral to internal medicine is probably a good idea. A good internest will be really thorough and will hopefully look at things a GP might not. I do know how incredibly frustrating this must be. It's sad that it takes many of us years to get diagnosed. Part of that is because the symptoms we have are present in a lot of illnesses and part of it is because these diseases can progress very slowly and you can have symptoms for a while before anything shows up in your labs.

Hang in there and don't give up.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 10/27/2007 8:37 AM (GMT -7)   
Jana,

Welcome! I have one major piece of advice - do not give up. Any type of autoimmune problem is difficult to diagnose. Many people, especially those who do not get ill often, seem to brush off our problems. I would be a wealthy person, indeed, if I had a dollar for all the times I have been called a hypochondriac! In looking back, I had symptoms on and off for more than 15 years before lupus or RA was even considered. Keep good notes and start a file of all the doctors and specialists you see. It never hurts to have too much history. My current rhuemetologist found it very helpful to have proof of my past "issues".

Good luck and I hope you find answers very soon!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/27/2007 9:35 AM (GMT -7)   
Jana,

Welcome to the forum. I'm so sorry for what you're going through, and at your age! I've been accused of being "depressed" when I've actually been too fatigued to move, and for a long time no one took me very seriously either. Don't apologize to anyone for what you're going through.

I hope you find a good doctor who can help you get to the bottom of what's going on. And I'm happy you're here.

((((hugs))))

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 10/27/2007 10:35 AM (GMT -7)   
Jana.. I do hope you can find the right person to help you.... I probably went to 5 or 6 until I found this wonderful Dr. in Tulsa... I live in Arkansas now but I drive to his office every three months because I think he is the best... Good luck....

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/28/2007 12:17 AM (GMT -7)   
Jana--
One thing I would suggest is that you get your anti-thyroid antibodies (TPOs) checked because your symptoms sound endocrine related and even if your TSH (thyroid level) is normal you can have very high antibodies and have autoimmune thyroid disease (graves or hashimotos) and it can be destroying your body. It causes low temperatures and my head hurst like a fever and I get chills with a severe low temperature. I also have other endocrine deficiencies and you may as well but the thyroid is a place to start. I would ask specifically if your doc could run this one particular blood test for anti-thyroid antibodies(TPOs) because I've always been euthyroid (had relatively normal TSH -- thyroid level-- and have a lot of now permanent damage and my antithyroid antibodies were really really high). I take thyroid supplemet and I'm doing much better and it's brough them down some. Trouble breathing (apnea and dyspnea) are signs of thyroid disease. Arthritis is common with thryroid disease as is neurological damage. The abdominal symptoms you describe could be anything from irritable bowel to celiac disease to fatty liver to gi infection and you need to see a gi doc about that or at least make your primary care run some tests. I got an endoscopy and I've had colonoscopy and one time it was colon cancer and last time it was an unexplained inflammed bloody spot of unknown cause, we are still working on that. I was tested and came up negative for celiac. Also, could be a medicine side effect or part of a sun allergy along with the joint pain. Try staying in for a day and see if your symtoms are less, sometimes mine down't hit me till the next day even. Hope you feel better.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


JD19
Regular Member


Date Joined Oct 2007
Total Posts : 31
   Posted 10/28/2007 12:18 PM (GMT -7)   
Thank You so much everyone!

Emmas mom
Regular Member


Date Joined Aug 2006
Total Posts : 31
   Posted 10/29/2007 9:35 PM (GMT -7)   
Jana,
Welcome to this forum. It's really great here, the people are very helpful, and it's always nice to be able to vent to people who know exactly how you feel. I've been where you are, frustrated with no answers, there was always a reason behind my pains, fatigue, etc. I was diagnosed with lupus when I was 16, I'm now 23, and still am treated like a hypochondriac when I go to the ER or see a new doctor. they treat me like I know nothing, and am making it all up. It's very frustrating when you know something's wrong, and nobody can tell you what it is. I hope everything works out for you, keep us posted.
Erin
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