Still looking for answers.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 5/12/2009 9:40 AM (GMT -7)   
Hi! I'm new here. My name is Jenna. I am 29 years old and I have two little boys. I started feeling different after the birth of my first son in 2005. Since then, I have dealt with extreme fatigue, feeling sluggish all the time. I have joint pain. It hurts so bad going up and down stairs. My knees crack and sometimes almost give out. I have pain in wrists making it difficult to brush my hair at times. I am finding it hard to accomplish anything. I'm a stay at home mom and I have no energy to interact with my boys. I feel like a bad mom. I'm just so tired. I never feel rested. I feel worse now after having my second child in June of 2008. I breastfed him and it almost did me in. I quit that in March thinking I would feel better. I actually feel worse. I have kept putting off seeing the doctor because I will have a horrible week followed by a few good weeks and I think I'm okay. Then, it happens all over again. When I'm having a bad week, I also get mouth sores. They are usually on the tongue. I keep getting redness on my nose, cheeks, forehead. My Dr. put me on metro gel for rosacea. A few months ago my eyelids became inflamed, very red and flaky. I get rashes on my upper arms. They will appear all the sudden, they are bumpy and swollen, warm to the touch. I bruise very easily. I can't handle being in the sun for very long. I get very flushed and almost feverish, nauseous. about a month ago, I spent a week painting our old apartment with primer. I was a mess after that. Swollen cheeks, very red, very light headed. Over the past two years, I have had a ridiculous amount of new moles appear everywhere. They are so ugly. I have some spots that look like little red dots of ink scattered in different places. I have anxiety/panic attacks/paranoia/memory loss. I have trouble concentrating/slow to recall information. I am irritable. I wake up almost every morning feeling hungover although I don't drink. The last time I drank, I was violently ill. I can not tolerate alcohol anymore. I get sharp pains in my chests every now and then/ also this weird feeling that is hard to describe. It is almost like sudden warmth in my chest that expands. It just feels abnormal. If my face is covered even a little bit, it sends me into a panic attack. I feel like I can't breath. I also have to take very hot showers because I can't handle the cold. After the shower, I usually feel sick and light headed.

I recently had a physical done and my Dr who wants to send me on way with a diagnosis of Depression like she did in 2007 and give me anti-depressants (took them for 4 months and they did not help) set me up with an appt with an Endocrinologist because my little sister has Addison's disease. At that appointment, I didn't find out much. I'm still waiting for those blood test results. I did find out that I had a positive ANA test and the DR said that my thyroid had a rough texture (what does that mean?) He has referred me to a rhemutologist for more testing possibly for Lupus and also a neurologist because he thinks my memory loss and other cognitive problems might be because I am having seizures. (My father and son have epilepsy-still looking for answers to my son's condition).

I just wish I knew what is wrong. The earliest I can see the rhemutologist is July. I'm tired of hearing from my husband and my family that this is all in my head. I am not depressed. I really feel like something is wrong with me/ like my body is trying to tell me something. For the past 4 days, I have experienced increased lightheadness, with a full feeling in the back of my head and between my eyes (sinus problems?) I am dizzy and I feel like I'm walking on air most of the day. It gets worse as the day progresses and I feel like I am going to pass out by the end of the evening. It is all very frustrating as I feel that no one believes me because I look fine. I'm not fat or skinny. I'm just normal looking besides the redness to my face and eye lids. I manage to take care of my children. Although it is difficult. I have a hard time getting everything done. I think my husband thinks I'm lazy. I'm just so tired of feeling like I'm 50 when I'm not even 30 yet. I don't feel like I'm a good mother. I don't have the energy to entertain my children and often let the TV do it. I hate feeling like this. I used to be so energetic and social.

Any suggestions or insight or encouragement would be great.

Angel MJ
Regular Member


Date Joined May 2009
Total Posts : 36
   Posted 5/12/2009 11:47 AM (GMT -7)   
hi jenna ... you will be welcomed by caring, understanding and supportive people here ...
my heart goes out to you ... you need to know that you are not alone in all you are feeling! we have all struggled on our journey and you will find the support and encouragement and a place where you know people DO understand that there are invisible illnesses and things are not always going to be done the 'way they used to be' ... my husband too thinks it is in my head ... until the flare comes and i cannot get out of bed for weeks, nothing i eat stays down, the weight drops off and i sleep 20 hours a day ... but then heck between flares i think it is in my head ... but it isn't ... you have every right to be depressed ... but you know your body and you know when there is more to the picture ...
-brain fog prevails so i stand to be corrected - you mentioned getting 'hit hard' after the birth of your young ones - there seems to be a big connection with lupus & child bearing years, births etc ... keep reading threads you are certain to come across some real insight
i have been seing a rheumie for 6 years and went to him recently as all heck is breaking loose - hormones & allergies etc ... but Mr Doctor wants to blame 'just depression' so i will not be starting treatment & not be going for a follow up in 2 months - i am instead going to see an ENT, Gynae & new rheumie ... point is that i know my body i know that he is not seeing to my needs so he is fired!
hang in there ...
start you own medical file, ask for copies of tests & notes, keep a journal (easier for me to keep track of symptoms) try rating your symptoms on a scale ... 1-5 or 1-10 might even help hubby understand, pace yourself ... nap when you need to, don't feel guilty you are NOT lazy ...

***big hug***
Angelique

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/12/2009 2:20 PM (GMT -7)   

Jenna, I can relate to everything you said - have experienced most of it at one time or another over the years.  Please be strong and don't let doctors or others (family, friends) minimize your complaints, or chalk them all up to a "head" problem, and worst of all, make you feel bad about yourself.   Keep looking for a doctor who will listen, and take you seriously.  You must demand this.  Especially with 2 little boys to raise.   Your are on the right track with your rheumatology appt. and please be sure to take pictures of your rashes, eye inflammation, the little red dots, facial redness etc. because more often than not, when your appt. time rolls around, everything is gone or minimal.  It's very helpful for diagnosis, and something I wish I'd known to do before I learned about it here.  

You will find tons of support and information on this forum.  I have found it so helpful in a kazillion ways.  Most importantly you learn you are not a nutcase and you are certainly not alone. 

Hang in there and learn all you can before your rheumatology appointment.  And welcome!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 5/12/2009 2:39 PM (GMT -7)   
Thank you Angelique! I appreciate the advise and support. I am actually having a really hard time with this today. I feel extra crappy. I just spoke with my primary doctor to see what my ANA level was and the pattern. She said that it was 1:320 and that they do not know the pattern yet. She has sent the blood work off for more testing. She mentioned Lupus. I just think it is funny because I called about a week ago and asked for my results and was told that everything was fine, which blew my mind. I didn't even talk to the DR, she had a nurse call me back. Then, I found out today that my ANA test was positive from the endocrinologist. She also acted offended that I am going to see a reuthomatoligist. (sp?) I honestly think that when I called for my results, she just skimmed them and missed the positive ANA. It would of been nice if she had called and told me that she was sending my blood off for more tests and that I might have Lupus. I've been so miserable for so long. I have mixed feelings right now. I am mad that I went to this same dr for similar problems back in 2007 before getting pregnant with my second son and she dismissed all of my feelings claiming I was suffering from depression giving me anti-depressants. I'm mad at myself for pretending like they worked for my friends and family and I'm really mad at myself for getting pregnant again. I really think having another baby and nursing has just pushed me over the edge of feeling crappy to feeling horrible. I can barely type right now because I have so much pressure in my head and I feel nauseous and dizzy. I feel like I'm on the verge of passing out at any moment. I'm so stressed out too. My 3 1/2 year old has been a nightmare lately, especially today. Neither children will nap. Argh!!! shakehead I'm scared of having lupus and I'm scared of not having it and having something even worse.

Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 5/12/2009 2:45 PM (GMT -7)   
Thank you Lucy! It is nice to hear people believe me for once. I hate how my family brushes this off. "Oh Jen, you and your hypochondria" or "Jen, stay off the internet" . Why can't they just understand that there is something wrong with me. I know there is. It's crazy that they think I'm crazy and aren't worried about me. It makes me sad. What is crazy is that our family is no stranger to auto immune disease. My little sister almost died 3 years ago because she had Addison's Disease and didn't know it, everyone thought she was being lazy. mad

Angel MJ
Regular Member


Date Joined May 2009
Total Posts : 36
   Posted 5/13/2009 9:20 AM (GMT -7)   
jenna so sorry you are having such a bad day ... the most important thing to remember is to not hate yourself for any of this ... none of it was asked for and it simply is the way it is ... all we can do is trudge thru the junk and savour the pleasures ... bad days do pass ...
google 'the spoon theory' let your family, friends read it ... kinda puts things in perspective
please also take everything said by nurses with a 'bucket of salt' always insist on speaking to doctors only ... you cannot believe the horror stories of what people have been told in error by nurses. stress we do not need when already we are worried sick ... the internet has become a coping/survival thing for me ... so you keep posting
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 2:55 AM (GMT -7)
There are a total of 2,731,994 posts in 300,980 threads.
View Active Threads


Who's Online
This forum has 151146 registered members. Please welcome our newest member, LadyCapricorn.
156 Guest(s), 2 Registered Member(s) are currently online.  Details
Gemlin, maria2016


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer