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lupus_newbie
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 4/26/2012 8:27 PM (GMT -6)   
Hi there,
This is my first post...and a much needed one. I am a 27/f and the last few months have been trying. I try to remain optimistic and bubbly but today is a rough one.
I am sorry if this is long but here it goes;
In December 2011 I lost 10lbs ( I'm 5'6 120 normally) was sore everywhere...swelling of my joints, headaches, fevers, night sweats, sore throat, all lymph nodes swollen and incredibly tired....insanely so. Also had issues with memory (SO FRUSTRATING ...have an excellent memory), heavy chest(hard to breath), hands and feet cramp up, heart palpitating and racing. Rashing on my neck and behind ears...not itchy usually under stress.In general felt terrible for how young and healthy I was. I am sure there are other things I am leaving out but you get the drift. I went to a walk in clinic thinking I had strep since it was 2 weeks and nothing was changing. I am stubborn dislike going to the drs but it was ridiculous how terrible I felt. New to the city (Ottawa) just went to any walkin. The doctor said I looked terrible and that there was something seriously wrong. Rushed me to have all blood work, ECG and other things done ASAP and to see their specialist.
One week later I am at this specialist who said there were no result to come back next week. I come back says I have some strange virus try some heavy meds incase it is strep and told me to come back in 3-4 months if I still felt terrible!
One month later I was in emerge because I could no longer tolerate the pain and need it to change. The doctor there gave me IV and sent me to another specialist but waitlisted(Internalist).
I wait another month taking it to March. I LOVE him. fantastic, actually listened and looked over my previous blood work and notices that the dr's missed that I had a very LOW white blood cell count and abnormalities in my ECG. He orders me to have more blood work and to never step foot in a walk in clinic again.
few days later I am in seeing him again and my ANA is high and positive (might mentioned it was speckled?). Later on my double DNA (later appointments)is negative. He puts me on hydrochloroquin(200mg) and naproxen(500mg twice daily). Month later I am still flaring and feeling terrible and I call him. he puts me on predisone 20mg until the hydroch. kicks in. I am now down to 10mg of pred.
Lucky for me my contract has finished at work (government) and I find out tomorrow if I get E.I.(I should, hours etc qualify me). Today is what has got me down. I had an appointment with my dr who I love. I am still having sever flares... and he is sending me to a rheumatologist because the text book meds are not working. he still thinks I have lupus but not his diagnosis and it will take 3-4 months before seeing the rheum.
I am sad because I feel like that is a long time. I hurt so much. I need to find work, we were to have a destination wedding feb 2013 which now we have put off since being in the sun triggers me to flare terribly. I want to move on with my life start having a family. I am terrified that I won't get a good specialist and will have to wait again.
My family and fiance are understanding....I still feel alone. My family lives far away and I am alone in a city feeling terrible :(
I put on afront for most people like I am normal... Happy. I don't want to be a burden to my fiance (we have been together for six years). My mind is racing with millions of things ( a move in June, 50th bday mom 60th dad, fiance bday moms grad sister grad, major family wedding...so much stuff in the next 6 months) I want to do and my body won't allow. Even doing groceries is too much.
I am sorry for this vent......I sometimes feel like I am crazy. I am a perfectionist... I always have a plan.
I guess what helped me was thinking that the meds I was on were going to work..that this was only short term but to think it will be 8 months of this...
I still don't have a final diagnosis....
OVERWHELMED

Post Edited (lupus_newbie) : 4/26/2012 7:33:34 PM (GMT-6)


FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 4/26/2012 11:13 PM (GMT -6)   
Hello and welcome! I am sorry you are dealing with so much. Perhaps you could call the rheumy and ask if you could be put on a cancellation list? That might get you in sooner. In the meantime, try not to stress too much (I know, easier said than done). The plaquenil can take a while to build up in your system. And the prednisone should get you through the rough patch. Try to rest as often as you can. Until you get in to see the rheumy it might be best to try and take it easy. Let go of a few things and take care of yourself. Once you have more answers you will be better able to decide what lifestyle changes you want to make. I have noticed from reading this board that a lot of us are Type A personalities (very intense). Relax. Hope you are starting to feel better!
Take care, Fran

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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/27/2012 4:39 PM (GMT -6)   
Are you doing sun protection?
I'm sunsensitive and I use 100 SPF lotion with sun protective clothing and a hat. I also carry a sunbrella for long times outside.

I'm a teacher and I depend on my memory to get me through each day. So you know how frustrated I get with myself.
Joy

Elsie Mae
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 4/27/2012 9:45 PM (GMT -6)   
I am so sorry you are going through all of this without the right Dr, medicine, diagnoses, etc. Getting your name on the cancellation list for an appt with the new Dr is a good idea. If that doesn't work quickly, I recommend having your Dr refer you to a different Dr or he can call the Dr himself and try to get you in sooner. In the mean time , I recommend you try some relaxation, mindfulness breathing, meditation, yoga exercises to help you deal with all the pain, fears, frustrations, etc. and give you some relief. There are web sites with information on these techniques and books. All have been helpful for me at various phases of my life. Best wishes!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/28/2012 8:10 PM (GMT -6)   
Hi,

I agree with everything that has been expressed. I know for myself that stress is huge. It tends to exacerbate the symptoms and make the flares worse. Meditation and Tai Chi have been helpful. And talking or venting when you need to with people that understand what you are going through is the best for helping the emotional mindfield that comes with a chronic disease. Hang in there!!! You have a lot of support here.

lupus_newbie
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 4/28/2012 11:08 PM (GMT -6)   
I really appreciate all the support! I am in a better frame of mind today.
I will definitely look into getting onto the cancellation list on Monday.
I am not currently wearing sunscreen. My skin is sensitive, is there any brand you would recommend couchtater ?
I think right now I am going to do things in bite size pieces. Monday I find out if I get my E.I. If I do receive it, there is not the pressure the same to find work. I can take time for me and rest up.
It is going to take time to get use to this disease. I think I am in denial a bit since I keep pushing myself to hard all the type. It really is hard to just let go.
Is there anything I can take for the pain? The doctor recommended Tylenol but it doesn't work. Today was another rough one for pain (in tears). Sometimes I wonder if I shouldn't just go into emerg some days because of how out of control it can be.
One positive thing about me developing lupus.... I use to suffer severely from migraines. Ever since I started with lupus I do not get my migraines as much. I use to get 2-3 a week and I am down to one migraine every other week now..basically 2-3 a month now! I was getting the lupus headaches(are completely different from my migraine)at the start but my meds have seemed to fixed that.
I feel like my patience are shot though :( My fiance sister makes little comments all the time. Today she messaged me and I didn't message her back until late because I was sleeping most of today. She was like wow talk about a lazy saturday. the other week she was like 'what are you sick'...yes..yes in fact I am with a disease! I am trying not to take it personally. In the end it doesn't matter I have my fiance support and understanding. :)
Once again I REALLY appreciate all the feedback and support. It is like a warm hug that I really needed

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/29/2012 12:05 PM (GMT -6)   
The key is to reach out to people that support you and love you no matter what. I have friends that understand when I have made a date and then have to beg out at the last minute because I don't feel well. But I also have people at work who say things like, "Well, you don't look sick." And that is the crazy thing about Lupus. I might not "look ill," but if they could live in my body for just one minute, they might be able to understand why I do't feel good. Thankfully, like you, I do have a sweetie that gets it. And he is always there for me.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/29/2012 4:34 PM (GMT -6)   
I like Neutragena Ultimate Sheer lotion. I can find it almost anywhere.
Joy

angelsstef
New Member


Date Joined May 2012
Total Posts : 3
   Posted 5/6/2012 11:00 PM (GMT -6)   
hi lupusnewbie,

I definitely feel for you. I feel as if I'm a newbie as well, even though I was diagnosed over 10 years ago I haven't had a flare until this year.

I'm a long-time reader of this forum and you should find lots of great advice and comforting words here.

Welcome, hope it gets better soon :)

SpicyCurry
Regular Member


Date Joined Apr 2012
Total Posts : 22
   Posted 5/18/2012 1:57 PM (GMT -6)   
I am a newbie to Lupus also. I had been posting on the fibro forum but found out 2 days ago that my ANA is high and they suspect Lupus. I have been reading up on it and my vertigo symptoms...weird cluster/flare migraines, nose sores, nose bleeds and many other things all of the sudden make more sense. I have had hashimotos thyroiditis since college and i am in my late 30s now. I am heading to a new Rheumatologist for more testing and to evaluate medicines.

I am also considering changing jobs because I can't continue doing what I do now...I am not consistent health wise and the hour or more drive to and from work is really killing me lately. Some days it is all I can do to get dressed in get into the car. Yesterday I almost fell asleep driving myself home multiple times...it was a scary commute :( I am hoping for a less stressful job in the near future or I will be going on short term/then long term disability.

I am a bit overwhelmed at the moment with things. I am worried about my vision. It is very blurry and I have trouble reading on the computer for very long. I am scared to loose my vision. I love to paint and to be outdoors and can't imagine losing that. I am relieved that we have figured out something major that is causing my symptoms and I have a name/label for it. People are more accepting of Lupus than they are Fibromyalgia...which are both really dibilitating and invisible diseases.

I am so glad to have found this forum to read about others like me and share or vent when I need to with people who are in the same boat and can understand. :)

I wish you luck in figuring out your flares and symptoms and finding what works best for you.
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