View Full Version : Newbie.. but need help! Symtpoms, Lupus, ugh!

07-25-2008, 10:02 PM
..... having to retest because I'm having difficulty obtaining my records from my doctor(s) from where I used to live. My sisters have Lupus, CFIDS, and Fibro Myalgia, and so did my mother.. I have a doctor's appointment with a new doctor next week and I've written everything and all of my symptoms down, from A-Z, for the doctor's appointment. Here's what I have written down so far, from the top of my head (these symptoms mostly all come on at once, but most are ALWAYS there) NOTE: The sun brings on alot of this

Symptoms (They come on all at once, and go away for a short period of time, then come back- most of these STAY!)

(Previous diagnosis of Systemic Lupus, Fibromyalgia, Vascular disease (hardening of the arteries), Chronic Bronchitis, Bipolar Disorder, IBS, Lactose Intolerance, Interstital Cystitis, and Arthritis), and also tested positive for Anemia and CEN-125 test came back 3.6 in 2005); also was referred to an Endocrinologist back in 2003 because Dr. Pecar tested my thyroid and it came out abnormal- after the Specialist ran blood tests, she seen nothing!

* Difficulty concentrating
* Feeling Lethargic (can be serious/severe at times to where I could just pass out where I'm standing- as if I feel intoxicated or something)
* Dizziness
* Severe fatigue
* Abdominal pain that can be as severe as child birth!
* Manic moods that turn into dizziness and panic attacks (every single day, about twice or more per day) Getting worse!
* Muscle aches and pain
* Immobility
* Bone pain
* Constant ligament injuries
* Swelling of joints
* Neck pain (can be so stiff at times to where I cannot move my head at all!)
* Severe migraines
* Depression and anxiety (leading to isolation- been a numerous part of my life)
* Hardening of the arteries
* Failed PFT (Dr. Pecar said I had acute Bronchitis)
* Severe lumbar and upper back and also Hip pain, radiating down to my legs and feet, and most of the time I cannot walk!
* Repeated kidney/urinary tract/bladder infections (Tested numerous times and found protein in my urine w/ blood since I was young)
* Nerve damage
* Pleurisy (happens about once per month- sometimes VERY severe!
* Heart Palpitations and periodic chest pain
* Glands always swollen for no apparent reason and severe ear and jaw pain
* Severe allergies
* Lack of energy- usually about 20 days out of the month or more (sometimes I'm VERY immobile!)
* Horrible memory loss (also from lack of concentration- no matter how hard I try!)
* Confusion, which can be severe! (spending hours on making one simple decision!)
* Low blood pressure since I can remember
* Severe sensitivity to the sun!! (I get blotchy red skin on my face and legs)
* Patches of scaly skin- lesions on my chest and upper arms and mostly my face
* Butterfly rash- periodically
* Constant urges to urinate w/ pain
* Morning stiffness which last for usually an hour or longer
* Unexplained low grade fevers- always finding myself w/ goosebumps and feeling cold- body temperature always elevated
* Severe RLS at times
* Difficulty sleeping at night
* Numbness and tingling for no apparent reason (especially my fingertips and toes/feet)
* Mouth ulcers which do NOT go away until another one starts- only happens when the other symptoms come on
* Exposure to the sun usually brings upon all of these symptoms or when it rains
* Experienced really bad hair loss in 2001- still happens but not as severe
* Severe Visual Disturbances (even when Iím wearing my corrective lenses)
* Difficulty Swallowing
* Dark circles under my eyes when these symptoms come on

If anyone has any feedback, please let me know.. Thank you so much!

P.S. Feeling like **** today!!!

07-25-2008, 10:28 PM
I can relate to almost all of those symptomst. I went to get an ANA test and tested negative. Going to see a rheumy august 24. I'm getting those lethargic feelings a lot now and my knuckles are starting to swell and get sore. I think its all hitting me at a quick rate now. I know what you mean when you're just standing there and everyone zones out and you kind of forget where you are at sometimes or how you got there. I got it tonight at our county fair and all noise drowns and and you feel real out of it. Hope you find out whats wrong with you.

Oh i have to ask is pleurisy when you take deep breathes and your rib cage feels like a stabbing or shocking feeling?

07-26-2008, 07:25 PM
See my response to your post in "New Members"

Peace and Blessings

07-26-2008, 08:02 PM
Hi Steve.. Yes, Pleurisy feels like someone's taking a knife to your lung/ribcage.. ugh!

Lethargic feelings are awful.. last night, when I was at the store, I felt as if I was drunk! I couldn't believe how OUT OF IT I was! oh my- everyone asked me if I had been on something! Lordy, I don't use drugs nor drink, so of course that's not it- I'm messed up naturally! I cannot wait until I can find out if I can get this under control.. it's awful! I had to stop working because of this.. I would be at work and around 1pm, I would feel like I could not focus at all and like I was ready to pass out where I was standing...:evil:

Ever since I woke up this morning, my wrists, ankles and knuckles have been so swollen.. My wrist feels as if someone broke it! I heard that if I take a sock and fill it with white rice and heat it in the microwave for a few minutes and place it on my wrist, the pain will cease?? Weird, but I've heard this from a few different people so far in the past several months.. :D

I thank you both for your replies.. so much.. you have no clue!

Hey, does anyone experience SEVERE allergies as well? I cannot stop sneezing! My eyes itch to the point where they'll swell.. (the kids are like that, too) I use Patenol for my eyes, but can't take benadryl because it makes me sicker than ever.. I've tried everything there is for allergies.. Currently on Astelin spray.. tastes awful! Any suggestions for this? Sorry I'm such a pain, you guys.. I'm miserable.. :mad:

07-26-2008, 10:07 PM
That is a nasty little problem I have too, just like being drunk. Went to a family babeque last week, and almost fell in my brother-in-laws lap. He said what you been drinking? Just the shade, trying to hide from the sun. I even had all the gear on, long sleeves, 45 sunblock , and my big hat( that if you wear it uptown you set tongues a wagging) yet that darn sun hammered me and drunk it was. ( Haven't drank even a little, in over 6years) but if you see me walk sometimes you wouldn't believe it, and I have even got the bed spins, where I had to hang my leg off the bed( which probably really doesn't help, but if you believe anything is possible)Try to explain to my dr and they just look at me like oh yeah! How's your home life! I never knew if that was part of the medical text in college coarse for drs, but they all say it when they are confused too. Must be that fall back question. Anyway if you get a definetive answer on that one, please share, as I too would like to know. Good luck and God's speed!

07-27-2008, 11:09 AM
Hey Alli,
Sorry your having so many problems - it really stinks!! As Saysusie and Oluwa said, you should have a list of symptoms ready for your doctor. However, I notice that one of your symptoms includes painc attacks. I would be careful telling the doc this, only because MANY docs will chalk up your symptoms to anxiety. Especially with THIS many symptoms. Docs are taught that more than three symptoms at a time are a symptom of hypochondria. While this is a terrible injustice to many of us, it is the reality out there. Most of us here have been told things are "in our head". I would just be careful with the anxiety problem. As Im sure it is one of your symptoms, that may be ALL they hear from you, and I would hate for you to leave there having wasted your time.
I hope you find the answers you need to feel better. This is a wonderful site - welcome!!

07-27-2008, 11:51 AM
I know exactly what you mean.. I have a doctor from where I used to live who vow that all of the symptoms are truly there.. I think that the anxiety is part of depression I've experienced.. Drives me nuts.. I hate having to live this way..

I just went on a 'nature walk' with the hubby and the kids and of course my two dogs (who literally walked US!) lol.. now I'm ready for a VERY long nap.. I literally dragged almost the whole time I was walking.. Geez, is there ANY relief from this??

my wrist feels alot better, but my fingers are swollen and sore from trying to hold onto one of the dogs.. :roll:

Anyway, any doctor could clearly see most of these symptoms with tests and medical history.. I'm not sure if a doctor who told someone they're a hypocondriac are qualified to be a doctor in the first place.. lol.. If I have to, I'll FIND a way to my old doctor one way or the other.. (it's hundreds of miles away but it just may be worth it)

Thanks everyone!

07-28-2008, 07:52 AM
Unfortunately, you will hear MANY stories of docs saying their patients are hypochondriacs, depressed, stressed, etc. It happens more often than not, bellieve it or not....Most everyone here has had that experience at least once...
This issue is huge for me, and I just dont want to see another one of us suffer needlessly...I also had to leave work - three different jobs over ten years - and, though I was never told I was a "hypo", I was told that there wasnt anything they could do for me...Although once I was told to see a shrink!! lol - Yeah, I need a shrink because Im sick and no one will help me!!!
I hope your appt goes well, and you find some relief soon...take care!
Love Lauri

07-28-2008, 01:45 PM
All those symptoms!!!!!

Yes when I went to a neuro with my list of symptoms and mri came back clear he fobbed it off as "anxiety." I was devastated because I was sick and looking for help! Of course I was anxious anybody would be!

I had panic attacks in the past from post traumatic stress syndrome (but I wasn't going to tell him that) and I had never had the neurological symptoms I was now having.

Anyways, he sent me to a psychologist and HE didn't seem to think anxiety was causing my obvious physical symptoms. Sometimes it is best to go after all you need counselling after the stress these doctors put us through. :x

07-28-2008, 04:00 PM
You know, I was thinking...why dont you just tell the new doc that you have SLE and are in the process of getting your old records back? If you have already been Dxd, why go through all the aggravation of getting Dxd again? If you tell your new doc thats what the old doc Dx you with, maybe he'll just run some blood work start a baseline (in order to check for futher disease activity), and start you on meds?
Do you think this might be a better option for you? Maybe instead of starting the whole process over again, which could have you waiting longer for you to get treated, you could just go in there with your current Dx...Again, still trying to save one of my fellow lupies the struggle of Dx...

07-28-2008, 05:56 PM
Actually, I'd already planned that.. LOL.. I wrote down all of the illnesses that I was previously diagnosed with to better help him understand what's going on.. I go on the 14th of August.. UGH.. I hate waiting for so long.. makes me sick.. But at least I can finally get in..

It'll be a process, I already know.. but I just know that the doctor will want to run all of those tests all over again.. which is fine..

I'm so glad for your support- you have no clue how grateful I am! lol.. I'm very happy I found this forum! :D

07-29-2008, 07:31 AM
We are happy you are here too!! And you are quite welcome...I cringe thinking of how many people are out there suffering needlessly. I actually had a weird experience at the docs yesterday (and he's pretty understanding!!). When I told him how swollen I was, and that I felt like my circulation was messed up, he just said, "Ahh, yeah, well theres not that much fluid there though..." Im not exaggerating when I say my eyes were like slits, and the rest of my body felt as if it would just pop open if I made one wrong move!! He kind of blew it off...
Oh well, I guess I have to be happy that Im being treated at all....uughhh
Swelling is better today anyhow, so, I guess Ill just deal with it...
Glad youre going in with your original Dx...I think thats a good idea...Docs will usually just follow suit from previous docs, which is usually BAD for us if our previous docs thought nothing was wrong. Then when we get a new doc, he usually will automaticallly agree with the previous doc and not look for anything new, you know? But in this case, its good!!

Good to hear from you - hope your feeling OK!
Love Lauri