Having a rough time

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TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 11/3/2008 5:11 PM (GMT -7)   
I haven't posted in awhile but I've been reading and it looks like a lot of us are having a hard time right now.
 
On the miserable scale with 10 being the worst I usually fall at a 6 or so but this past week and today in particular... I feel as if my pain is off the charts. I think it is because a flu bug is going around in my house. I have no sign of a bug but my body is in overdrive trying to ward it off no doubt that I am just wiped out.
 
The time change does not help either.
 
I am typing this at work with about 25 more minutes to go and I honestly don't think I can make it to the car. Since I've been feeling so lousy and had some visual disturbances my Rheumy tested me for vasculitis but it came back negative. The eye specialist said my eyes are fine and my ANA is showing negative for Lupus now. What??
 
How can I be feeling so much worse yet my bloodwork says I have improved?
Diagnosed with Lupus in January 2008.
Currently taking Hydroxychloroquine (Plaquinel), Lisinopril and Hydrochlorothiazide.
 

TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 11/4/2008 8:42 AM (GMT -7)   
I was hoping to at least get a couple of words of encouragment but not one reply. The energy it took just to type the email and this response was almost too much but I figured that someone would understand and offer some words of encouragement. I'm a bit disappointed.

Diagnosed with Lupus in January 2008.
Currently taking Hydroxychloroquine (Plaquinel), Lisinopril and Hydrochlorothiazide.
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/4/2008 9:13 AM (GMT -7)   
Sorry we didn't respond in your time frame, sometimes that just doesn't happen.

I'm sorry you are having a painful week...it's hard to rest or relax when illness is in the house. Sometimes I think I do get the flu or whatever, it just presents like pain rather than other symptoms because of the auto-immune meds. In either case, it's no fun to be in pain...are any of your meds the kind you can increase (with drs permission) a little to get some relief?

I hate it when my eyes start doing weird stuff...my drs haven't been able to find consistent, identifiable problems with mine either. I've managed to correlate the eye oddness with times of stress or flare...hopefully that is what's going on with you're too, and they'll get back to normal soon.

Hang in there

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/4/2008 9:17 AM (GMT -7)   
I read your post yesterday and felt too bad to post, and still do, but had to write a few words to tell you that I'm so sorry you feel so bad and that you didn't get the support you needed. I do understand. Give folks some time and they'll be there for you. I imagine everyone is trying to figure out how to get to the polls. I know I am. I have no idea how I'm going to be able to stand in line for more than 10 minutes.

Feel better my friend. I hope today is a better day for you and that the flu bug leaves your house soon. That's all you need. I'm going to throw on something so that I can get out and vote.

Hang in there.

(((((Hugs)))))

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 11/4/2008 9:24 AM (GMT -7)   
Thank you. I'm sorry if I was negative I am just feeling so miserable. It's the pain talking.
Diagnosed with Lupus in January 2008.
Currently taking Hydroxychloroquine (Plaquinel), Lisinopril and Hydrochlorothiazide.
 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/4/2008 9:58 AM (GMT -7)   
Hey girl,
 
Sometimes that first day back to work from the weekend makes the forum a bit slower. We definitely want to support you and give as much encouragement as we can. (((((((hugs)))))))).
 
Those visual disturbances you're having; can you describe what they are like?  What do you see?  Any headaches with them?
 
I have visual disturbances too. I went through the gamut of specialists and tests.  The diagnosis I got is something called Amaurosis Fugax.  Yeah, weird name eh!  You can google that and see if it applies to you.  My symptoms are pulsating silver bullets that go across my eye, a dark grey screen that covers at least half of my vision in one eye.  It can cover the top half, or sometimes the sides.  It's really strange.  Hard to explain. I never get pain with them. Most episodes only last about a minute or so.  My neuro said if they last more than an hour, I need to get to an ER. 
 
I'm not saying this is what you have.  Just giving you my experience with visual disturbances.  I hope you get answers very soon. I know that dealing with pain is so hard.  I'm having trouble too.  It gets discouraging for sure. I hope you have a good day today,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 11/4/2008 10:02 AM (GMT -7)   
Hey Tibi, don't sweat it, don't be sorry! It's a slow board and replies are not always quick.

I'm listening :-)
I clearly recall how hard it was when I was at work all day and feeling just terrible.

On what basis did your rheum dx you with lupus? What are your symptoms?
The world breaks every one and afterward many are strong in the broken places


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 11/4/2008 10:38 AM (GMT -7)   
My visual disturbances were chalked up to be an Ocular Migraine (no pain). I actually went blind in one eye for 20 min or so. It happened once and I have no idea what caused it but since there is no eye damage I just have to report if it ever happens again.

As for the lupus.. my numbers have always been all over the place. The doc dx lupus after I improved with the meds.. and now I have the rash which I did not have before but my numbers are not indicating lupus now. It seems that when my numbers are great, I feel awful and yet when they are bad, I feel great. I can't make sense of it.

My symptoms:

Fatique (sometimes debilitating but always there)
Weird rashes.. sometimes on legs but now on my neck.
My entire body hurts all the time with extreme stiffness but yesterday was the worst. Dull throbbing ache.
Sometimes low grade fever
Memory loss also get confused sometimes
Trouble sleeping. I get on average about 3-4 hrs a night. I can't lie down for too long it just hurts to do so.
Seem to have some IBS issues as well but sort of always did
Occasional numbess in limbs.

That about covers it.
Diagnosed with Lupus in January 2008.
Currently taking Hydroxychloroquine (Plaquinel), Lisinopril and Hydrochlorothiazide.
 

oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 11/4/2008 11:27 AM (GMT -7)   
Sorry you are feeling so bad, but I for one don't get on here every day so I don't post that often. I hope folks don't take that to mean that I don't care about their problems. I really hope you are feeling better today.
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 11/4/2008 12:45 PM (GMT -7)   
TiBoBi said...
My visual disturbances were chalked up to be an Ocular Migraine (no pain). I actually went blind in one eye for 20 min or so. It happened once and I have no idea what caused it but since there is no eye damage I just have to report if it ever happens again.

As for the lupus.. my numbers have always been all over the place. The doc dx lupus after I improved with the meds.. and now I have the rash which I did not have before but my numbers are not indicating lupus now. It seems that when my numbers are great, I feel awful and yet when they are bad, I feel great. I can't make sense of it.

My symptoms:

Fatique (sometimes debilitating but always there)
Weird rashes.. sometimes on legs but now on my neck.
My entire body hurts all the time with extreme stiffness but yesterday was the worst. Dull throbbing ache.
Sometimes low grade fever
Memory loss also get confused sometimes
Trouble sleeping. I get on average about 3-4 hrs a night. I can't lie down for too long it just hurts to do so.
Seem to have some IBS issues as well but sort of always did
Occasional numbess in limbs.

That about covers it.

Lyme disease mimic lupus (In my opinion causes lupus). I was dx with lupus and 5 months later dx with lyme disease.

You may want to check out the lyme forum for some info. You have all the symtoms of lyme as well. And lyme patients take and show improvement on Plaq
 
Just a suggestion
The world breaks every one and afterward many are strong in the broken places

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