Somewhere to wait...

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New Member

Date Joined Nov 2009
Total Posts : 4
   Posted 11/1/2009 1:39 AM (GMT -6)   
Warning - this is going to go all over the place, so you might want to take notes.

Hi there! I'm new and here's my story...

I'm not sure where to begin here... well, I've felt not-quite-right since February--ok REALLY not-quite-right--and nobody can give me an answer. I'm in Ontario which translates to waiting a ridiculously long time to see a specialist of any kind. I've got two little girls (2 and 3 1/2) so not having an answer is pretty stressful when I NEED to be able to run around every day!

So... ok I don't want to spook anyone here but things seemed to get really bad after I got a flu shot last November. I'd never gotten one before but I had just started selling lottery in the mall and I'd seen one too many people cough into their hands before handing me their money. So after that shot, the first thing I noted was that my heartburn (which I've had for over 15 years) got worse. On top of that, I had started having what I guess were panic attacks--sudden unexplainable bouts of racing heart and thinking I was going to faint. Several trips to the ER resulted in four clear ECGs. Over 10 months I've tried every PPI in the book, after they decided the chest pain was inflammation from heartburn. Every single PPI makes me feel horrible, so I quit trying. Despite those, I still had bouts of chest pain. Keep that in mind, it'll come up again.

In April I started having pain in my hands to go with this weird chest pain thing... and headaches. Nasty headaches. The sort that made an ER doc give me 6 Demerol and tell me "If it gets bad enough that you have to take those, come back." CT scan was clean. Blood test after blood test was normal (CBC, various chem panels, ESR/CRP), except for the occasional rise in WBC that usually coincided with a UTI or something else I knew about. Another ER doc suggested it was some autoimmune reaction to a virus, and gave me the ridiculous dose of 30mg of prednisone a day. I weaned myself off after 3 days of feeling near-psychotic, and later found out that 30mg is a HECK of a lot... I should have suspected when the pharmacist told me "we only have 5mg pills, so you'll have to take 6." Helped nothing, at any rate. From there, my Dr started scheduling specialist appts. First stop was the head OBGYN in town, who sent me for a pelvic MRI that came back clean (no explanation for the pain and heavy bleeding there). Along the way I also developed appendicitis that took 2 days to diagnose and that one Dr tried to suggest was just stress. That didn't solve anything. Onward to a general surgeon, who scoped my stomach, did a biopsy for celiac (also neg.), treated me for h.pylori (still didn't fix anything), did a HIDA scan (ALSO perfectly normal) and sent me on my way. Somewhere in there I had an ECHO that told me I have some mitral regurgitation ("but it's nothing," so says my Dr.) and the scope also showed that I have a small hiatal hernia (SOME explanation for the chest pain there).

Still with me? I commend your perseverance!

Ok, so next stop, a rheumatologist that was out of town that I waited for MONTHS to see (over 5, to be exact). He asked me a bunch of questions, admitted that a lot of them had to do with Lupus (something several other ER docs had asked me about), and sent me for a battery of blood tests (including ANA, anti-DNA antibody, more ESR, platelet count), hand and foot x-rays, and a bone scan that I have yet to schedule (bad patient! bad!).

So, here I am, waiting until JANUARY 5TH(!!!!) to find out the results. I assume that if he found something that was going to kill me in the next two months, someone would phone me. Many days I feel OK. Most days, I have to nap on the couch in the morning because I'm exhausted - either I just am, or I couldn't get to sleep until 3-4 AM the night before (and you are not allowed to scroll up and check the timestamp on this post). On bad days--and I'm having a string of them now--my hands REALLY hurt, my ribs and back hurt, my hips and knees hurt, I'm tired, I don't feel like eating... and when it gets really bad, I lie on the couch wondering if I'm going to survive the next week or if whatever this is is going to kill me. People keep asking if I have a rash on my face, and I don't. My cheeks and nose sort of do if I get warm, like with a hot bath, or if I'm tired... my husband insists he doesn't see it. I do get hives, or rather, hive. One or two at a time, almost like a mosquito bite, but it's spontaneous. I forgot to mention that to the rheumy... oh well, I can tell him again in JANUARY.

So I wait, and I suffer, and nobody takes me seriously around here. Either "it's nothing" or I'm just being lazy.
I hope everybody here will!

(thanks for sticking it out with me there - and I'm sure there's a dozen relevant things I forgot, but my mind is all foggy right now)
Waiting for an answer since Feb. 2009...

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 11/1/2009 3:20 AM (GMT -6)   
Hey there seedbeads, welcome to the group. Glad we left the light on for ya. I have never really heard of getting sick after the flu shot but heck I still think if i drive far enough I'll fall off the side of the earth so can't go by me.
Anyway It's hard enough to get anywhere when you go to one dr. but when you have to do the ER thing then other then a few tests I would imagine you wern't getting very far. I'm in the u.s. so I really don't know the canadian health care system. I don't even know the u.s. one! skull .
Man there are so many people here that have been sick for 20 years without a diagnosis.
As for the steroids that is not really that bad. Many pharmacies only have them in 5mg tabs because it makes coming off of them easier. Right now I am just going down to 40mg for 3 days. I was on 60mg. But I was in hospital so I was pretty sick.
I too have waited months to get into a rheumy. Then they don't want to get pinned to a wall with what it can or can't be. Normally though they at least give you steroids and plaquenil to get things going by treating the symptoms. (you'd thought you would be all over the board!" I'm 52 years old so I have no kids at home I am always amazed at how you guys manage it. I actually get the rash or rashettas you mentioned too. or tiny little red spots that one coat of make up would hide. I don't get the glowing wolf mask thing going on. Not everyone does.
I'm sure others will be on in the morning. I'm having a rough night I'm fearing I may have a shingles case coming on. Oh kill me now!!!!!!
I enjoyed your post. Look forward to getting to know ya

systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 11/1/2009 7:54 AM (GMT -6)   
Hey Seedbeads....Welscome to the group! This is a great group of people who are very supportive and understanding. I am sorry to hear you are going through a rough time. Has your symptoms been steady since February or have they come and gone? What you explained sounds a lot like something I went though when I was 16. I went to several doctors and no one had any explanations for me. The last doc we went to about that said it was panic/anxiety attacks and we settled down with least there was a reason. Then 3 years later I started having severe joint pain and apparently my blood work was something you would see for Lupus out of a book. My first visit to the doc he listened to me and took blood work and my second visit I had my Diagnosis...SLE. I was very lucky because I understand it takes a lot of people years for their diagnosis. I hope you get your answers soon! I sure hope and pray you don't have lupus. But if you might should get used to the idea of prednisone. I have been on 60 mg for most of this year (off and on) In january I had 3 days of 1000mg IV of Prednisone and I am looking at another round of it in the near future if things don't get better.Friday I will get 500 mg of pred with my Cytoxan! But I look at it as hey...this is gonna help me feel better or help my blood work show improvement....How did the pred help when they put you on it? Did you notice a big change?



Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril, hydrochlorothiazide, Midrin, Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


New Member

Date Joined Nov 2009
Total Posts : 4
   Posted 11/1/2009 10:13 AM (GMT -6)   
Thanks for making it through my post!

From July until a couple of weeks ago I felt relatively OK despite discovering that I can't have dairy anymore all of a sudden. I had a few months where I was a little tired (my Dr. blames lack of protein), but my hands didn't hurt nearly as much and I was able to get out and have fun with my kids. I started to feel really awful again in the middle of Oct., back to napping on the couch all the time and not sleeping until 3 AM and all that.

I had a doc tell me I was just stressed and I've had a few tell me it's all in my head (heck, that's what the Dr tried to say when I had appendicitis - no testing, just "you're too stressed. Go home and take an Advil."). Others just shrug and do nothing. My family doctor has resorted to "Well you'll have to ask {insert specialist name here}."

Honestly I can't remember if the prednisone helped me or not because it made me feel so weird that all I remember is being really uptight and touchy. I've still got some in the cabinet but my DH won't let me touch it to see if it helps.
Waiting for an answer since Feb. 2009...

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 11/1/2009 10:41 AM (GMT -6)   
Hi Seedbeads!
Your post was excellent! You should print it out for the docs to read. Your story sounds similar to mine - and actually - like quite a few of the people here! Getting from symptoms to diagnosis is a true roller coaster ride! Many doctors and much frustration!
I saw that you didn't stay on the pred long, did you notice any improvement on your symptoms? I know the stuff has awful side effects, and I try my best to avoid it, too, but when I am really bad, a "pred burst" can usually get me back headed in the right direction.
Hope to hear that you get some answers soon. For now, listen to your body and rest as much as you can! Whatever your diagnosis turns out to be, extra rest can't hurt and will help you deal!! Good Luck!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 11/1/2009 11:26 AM (GMT -6)   
DON'T take prednisone on your own. It MUST be taken under strict doctor's care.

Sorry you've been having such a tough time this year. I believe that it's going to be important that you educate yourself since you're having such a tough time finding a doctor. Make a detailed list of your symptoms and take that in the next time you see your rheumy. When the results of your blood work come in make sure to get a copy of them from your doctor so that you can learn to understand what they mean. And finally, don't give up. Many of us here identify with what you said about being told that it's all in your head, but keep forging ahead till you find out what's wrong.

I'm glad you found this forum because you're in real need of a support group. Feeling ill and raising children must be a mom's worst nightmare. Good luck & hope your doctor starts treating whatever you have so that you can get some relief.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

New Member

Date Joined Nov 2009
Total Posts : 4
   Posted 11/1/2009 11:39 AM (GMT -6)   
Oh believe me I'd be asking my Dr about it first, I hated that stuff. I need to make an appt with him anyway; I know he's got a copy of the bloodwork I had done last week and I want it!! Plus I've been having suspiciously dark pees the last few days (like green tea) and that bothers me.

What really gets me about the kids is that most of the time, they're cooped up in the house and left to amuse themselves. I hate that I spend most of my days just lying on the couch, trying to find the motivation to get up and take them for a walk or something. My oldest is starting to understand that "mommy never feels good." On days where I fall asleep on the couch, I hate to say that Disney helps me out a little. My mom also watches them a lot for me, which is rough because she's also at the hospital every day caring for my dad (who had a stroke last winter). I wish she wouldn't complain so much about it, but without a proper diagnosis, there's not much I can tell her.

If I had some kind of answer, at least it would be a jumping off point. It's like medical limbo around here.
Waiting for an answer since Feb. 2009...

Regular Member

Date Joined Oct 2007
Total Posts : 185
   Posted 11/1/2009 7:46 PM (GMT -6)   
Seedbeads.... your post about having the flu shot... that is exactly what happened to me.... but I've been told that has nothing to do with my illness but I can't get it out of my head... It was the very first flu shot I'd ever had.....
I hope you get some answers soon....take care....

Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 11/4/2009 10:34 AM (GMT -6)   
Hi Seedbeads..I read your post regarding the flu shot and we have a family member who cannot get the flu shot due to an allergy to eggs. There have been people known to have reactions to the flu shot.  I'm sorry you are going through all of this and I know it is nightmare to have little ones who are unable to grasp the severity of your illness.  I have had RA going on five years now and I also get the red rash on my face if I don't take my medication. It was horribly noticable and the last time I stopped my medication, everyone commented on my face, and my husband pretended not to notice, later he told me he didn't want to hurt my feelings, but it did look terrible. Now back on the Methotrexate, the redness has for the most part vanished.  I sincerely hope that you get into a good rhuemy, and the reason I say this, is because I have mentioned to mine that I haven't felt well, that I have been feeling exhausted, fluish without having the flu etc and all he does is frown and write it down in his notes.  As for the pred, that was a lot and at high doses, I'm sure it isn't pleasant, but if you are having inflammation it can work well at a reasonable dose.  I've taken it and all my joint pain was gone, it even cleared up my GI issues.
I wish you the best with your upcoming appointment, and when you go for your appointment if you are having any facial redness, if you normally wear makeup, try to go without that day at least for the appointment, so the rheumy can get a good look at your face.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 11/4/2009 11:25 AM (GMT -6)   
Hi Seedbeads, welcome to the group! As you can see this place is filled with wonderful, supportive people that truly care for one another.

Your story sounds familiar, joint pain, exhausting fatigue, etc. Unfortunately lupus is not one of those diseases that is easy to dx. It takes time, which means we have to suffer for a while. Sometimes we have to see more than one specialist (rheumy), I'm on my third and she is amazing! A lupus dx is like a big puzzle the doctor has to put together and if your labs are not in line with the way you feel (meaning not much is positive) it takes even longer, it took me about a year to get dx which is pretty fast.

I agree with Fran and Pat, print your post above for your doctor and make a detailed list of all of your symptoms including when they started and what makes them better or worse, also try to pinpoint the location and type of pain in your joints. I hope you stick around and feel free to ask more questions. Take care
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

New Member

Date Joined Nov 2009
Total Posts : 4
   Posted 11/4/2009 12:25 PM (GMT -6)   
My biggest issue is that I always forget things, or I don't consider them significant. Unfortunately I grew up in a house where every time I felt sick, I was told to stop whining because it was nothing. I have a hard time talking to doctors about how I'm feeling because I still feel like I'm just whining about nothing.

It really doesn't help that I've lost faith in my doctor. I went to see him about abdominal pain the other day, and all he had to say was "Oh you just need more fibre and water." He ignored me when I told him I wasn't constipated. His latest tactic is to pass my problem off to the next specialist, so I guess I'll have to wait until I see the gastroenterologist in a couple of weeks. I'm not comfortable seeing him for anything these days because I just get blown off.

...nuts. I had to get up and put one of my kids down for a nap and now I've lost my train of though.

On that note, here's a totally unrelated question - is it possible to have hypothyroidism and still have a normal TSH count? A few people have asked me about that but my Dr insists I'm fine because my TSH is normal.
Waiting for an answer since Feb. 2009...

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 11/4/2009 12:56 PM (GMT -6)   
The TSH has a wide "normal" range, and it's possible to be on the low end of normal and feel tired, sluggish, etc. 20 years ago my TSH was normal and yet I knew something was wrong. I was getting lost on my 5 min drive to work, would fall asleep at stop signs, became constipated, and was so darn tired I could hardly stand it and three doctors told me "you have three kids and a job. You're going to be tired." I finally found a good PCP who discovered that I had a cancer on my thyroid. Probably TMI, but these organs of ours are more complicated than we laypeople can understand.

Here's what I do when I go to a new doc. (For the rest of you who have heard this a gazilion time, sorry.) I get on my computer and type up a couple of sheets of paper with just facts (no prose - doctors aren't going to take the time to read a paragraph or two.):

1) Current Diagnoses
2) Medical history (incl. place and year)
3) Meds
4) Other meds I've tried & why they didn't work
5) list of symptoms and concerns
6) List of doctors (& specialty & address & phone number)

Make it clear and concise - bullet points. And when you talk to the doctor be very matter of fact. When folks start rambling on and complaining (not suggesting you do, cause I don't even know you) doctors tend to zone out. Just put it all out in black and white. And don't expect miracles. I went for over 20 years and 3 rheumys before I got the diagnosis of SLE. It's stressful, I know, but we have to do what we can to avoid stress. So hang in there, and we'll all be rooting for you.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

New Member

Date Joined Nov 2009
Total Posts : 6
   Posted 11/6/2009 8:41 AM (GMT -6)   
The symptoms sound similar to what i went through and still go through to a certain extent. I have been home all week feeling terrible, crying and just frustrated. The pain is almost unbearable and i feel like no one can relate. I am getting more depressed everyday, i have just been praying daily that they can find a cure for us. To me it sounds like you have some form of lupus, however am sure you know it takes some time to diagnose, as i was diagnosed at 35, but i believe i had this since i was in my 20's.
I remember the rash back then and no one knew what it was, my mom was putting aloe vera on it because she is from the islands, and my other family members other things. My hair started thinning, i was more tired, cold feet and hands, nauseated, could not eat and lost weight. Finally i made an appt at UVA in VA, and i was diagnosed there, and i see my rheumatologist every 4-6 months. I dont have flareups often, but when i do they are bad. I go to work at 6a.m. but i dont get enough sleep, i feel cause i dont have enough help because i think my family tends to think i play up my symptoms when i say i dont think i can go downstairs and wash clothes or clean. I have two children, one 14 and one will be 22 in 2 weeks, she goes to school away from home. My other daughter helps so much , but i feel like a burden to her. I only pray this disease skips my girls and no one else gets this stuff. I have a sister as well that suffers from lupus way worse than me, and she calls me for support, but i need support too.
I cant keep giving advice and no one has advice for me. Really i just need some prayers. Worried about my job, used up all my time, dont think boss realizes how severe this disease really is. Well please keep looking into alternatives, and one thing i will say that helps is also fish oil, something with the oil helps lupus sufferers, and i bought mine at Dollar General.

Regular Member

Date Joined Oct 2008
Total Posts : 119
   Posted 11/12/2009 12:39 AM (GMT -6)   
It's hard when you feel like people in general don't fully understand just how much this disease affects our lives...that we really aren't just trying to get attention, or be lazy in not taking care of some daily responsibility. I think it's bound to happen over and over and over again to us, and also to others with serious diseases...we look fine on the outside most of the time, but we feel like crap a good part of the time..I know that over the last couple of years my close friends have really had a hard time accepting the difference in me. Really believing that when I say I can't hang out in the sun at the lake, I really can't. That it really will make me sick. Or that somedays it really is too much for my body to drive 1/2hr out to go and visit them. I know that during my flares I have such a hard time doing regular chores...things get left undone so much. I am grateful for a loving supportive mom, who's so good to me...the rest of my friends and family try hard, but it's going to take them time. As it will with all of our loved ones, hey? I don't think that my husband fully understands the extent of it..I'm kinda scared for when he's worrisome to people who love me. Anyhow, I've gotta run...more to type later. Take care everyone

<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.

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