My worst nightmare has come true

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/11/2009 4:12 PM (GMT -7)   
Oh you guys, my Lupus is flaring bad.  I can't believe this.  The last time I felt like this was before my diagnosis.  Really thought I wasn't ever going to experience another flare.  How naive.  My knees are swollen and sore, my shoulder too.  I feel like crap, big butterfly rash on my face, a headache that hasn't gone away in 8 days. I've been on 40+mg of pred for 10 days now and I'm still feeling like this.  I have 2 more weddings to shoot this month and then the season is over, thank goodness.  I just can't believe this.  All that weight I lost over the summer is going to pile back on from all the pred.  I'm deflated and so disappointed.  I want to cry but my sjogrens is acting up too and there just isn't any tears.  LOL.  I can't even cry!!!!!  What the heck is that all about.  I want to scream. mad mad mad mad mad mad
 
All I can do right now is shake my head and throw my hands up in the air.  Thanks for listening.
 
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
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/11/2009 4:29 PM (GMT -7)   
Ginny,
   Dear Friend!  I'm so, so sorry!  I've been so out of touch here lately.  I can't believe you're in such an aweful flare!!!  I wish there was something I could do to make it all go away!  Please know that you are in my prayers!!!!  Take care of your self.  You've always been such a source of comfort and inspiration.  God Bless you, Judy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/11/2009 4:55 PM (GMT -7)   
Oh, man. That is a terrible disappointment, I'm so sorry that's happening to you. I'll be thinking of you. Hang in there, don't worry about moderating, take care of yourself first.

Also a reminder to all of us to do a little less than we think we can as lupus is such a bloody unpredictable disease. ARG!

So sorry, Ginny.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/11/2009 5:29 PM (GMT -7)   
Geez Ginny, you sound awful. I can't imagine shooting a wedding while in such a bad flare. I hope you have plenty of pain meds to get you through this. Get as much rest as you can.

(((hugs)))

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

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


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/11/2009 5:45 PM (GMT -7)   
Ginny, so sorry you are flaring and in pain. If you can, soak in a hot bath and see if you can
get some relief. That seems to take a little edge off the pain for me when I'm flaring.

Hoping you feel better real soon!

Robin
 
 MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia
 MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 
  
 
 
 
 
 
 
 
 
 
 
 
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/11/2009 6:19 PM (GMT -7)   
Ug...I am so sorry! I really hope that you can find the strength to do the 2 wedding shoots! Just two more, I know you can do it and then you can have a good break. I am so sorry about this Lupus and Sjorgens flair. I will be praying for you and sending positive thoughts your way!
 
Yes Lynnwood, this is a bloody unpredictable disease...Very nice wording for it!!!

Amy

 

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

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  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...

 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/11/2009 7:38 PM (GMT -7)   
Oh Ginny, I am so sorry ((((hugs)))). Your lupus is really flaring bad! Please take good care of yourself, you will be in my prayers!!!
Stacie
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)


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 9/11/2009 8:34 PM (GMT -7)   
Ginny,

I am so sorry this had to happen. I know that there are some things you must do, but, please, anytime you can, REST!!
Like Robin said, sometimes a long, hot soak in the tub can take the edge off.
((HUGS))
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.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/11/2009 9:30 PM (GMT -7)   
(((Ginny))) I'm so sorry you are flaring like this. CAn you get shots in your joints from the rheumie to help? They also bump up your pred dose. I hope you don't have some kind of infection too, making the flare worse. It does seem odd for you to flare so bad on such a decent dose of pred. People just don't understand how crippling and sudden this disease is when it hits. I did a little work and I"m smack worn out, I mean beyond exhausted. I got stung by wasps and they now are infected from being on pred and also stillhave alot of poison in them since I just don't clear that kind of stuff very well. Just little things even make things worse.

The shots in my joints didn't hurt and helped alot. I hope that you get some headache relief. A small comfort besides a dark quiet room can be some tiger balm massged into your temples and the base of your skull. If I was there I could give you a ****su head massage, they work.

Frans hot soak sounds good, maybe some epsom salts. Its sad but everytime we think it gets bearable, something always happens. I will send good healing thoughts your way and hope you get what you need to finish up your shoots.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/12/2009 7:45 AM (GMT -7)   
Ginny, your flare sounds terrible. I'm so sorry you are going through this. I wish the pred was helping more. Is there anything else the docs can try to get your flare under control? Hang in there and take care of yourself. ((((hugs))))
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 9/12/2009 10:13 AM (GMT -7)   

((((Ginny))))....so sorry you are having such a bad flare with the stress of 2 more wedding shoots on top of it, which has to be adding another whole dimension to the stress portion of the flare.  Try not to fret about the things you can't change and just concentrate on resting however and whenever and whereever you can.  Keeping you in thoughts and prayers....wish I could offer more. 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/12/2009 1:16 PM (GMT -7)   
Hi everyone, thank you for your thoughts and prayers.  I'm feeling somewhat better this afternoon.  No wedding until next weekend so I'm getting the rest I need.  My knees and shoulder are fine today.  No joint pain anywhere actually.  Fatigue is pretty bad and I still have this headache, but that might be from all the prednisone I'm on too.  Guess I'll see where I'm at on Monday and call my rheumy then.  For now, I can cope pretty well.  I hope everyone is enjoying their weekend.  Talk soon!
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
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/12/2009 5:09 PM (GMT -7)   
I am glad you are improved but sorry you are flaring.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/12/2009 6:10 PM (GMT -7)   
Hi Ginny:

I'm so sorry that you're having such a bad flare. (((((hugs)))))) I hope you were able to sleep and rest today. I'm glad to hear that you're feeling a bit better. I'll be sending lots of prayers your way. Try not to over do it next week with the Wedding. Know that where here for you at anytime. Again, I'm sorry about the flare.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2009 11:41 AM (GMT -7)   
Well, two weeks of high dose prednisone has got me through this flare up.  I feel so much better.  Now I'm dealing with the lovely effects of all that pred.  I'll be tapering down tonight thank goodness!
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
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/14/2009 7:25 PM (GMT -7)   
Glad you are feeling better and able to taper down. Its just always something with this disease.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/15/2009 4:28 PM (GMT -7)   
Hey thanks Marji.  I'm allowed to taper down to 20mg tomorrow morning.  That's a big relief.  I"m just about to climb the walls.  So far the Lupus symptoms are at bay and I hope they stay there!
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
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 9/20/2009 1:52 AM (GMT -7)   
Ginny,
   I am so sorry for what's going on with you.  I am at a loss for words, because I know how terrible it is to feel awful all day long and swing from med to med trying to feel something close to normal again.  I hope that you feel better soon.  You have helped me and so many others with your experience, great attitude and caring words.  You are so strong and will get through this.  You are in my prayers.  Keep fighting the good fight - you inspire even if you don't realize it.
Thanks!
   Trish
 
Dx'd with Fibromyalgia, High Blood Pressure, TMJ & Migraines
Meds & Supplements are Vicodin (as needed), Neurontin (300mgs 2/day), Cymbalta (60/day), Atenelol (50 mg/day) Biotin (5,000mcgs/day) & Yasmin (continuously).  Oh and a LOVELY retainer for the TMJ! 
 


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/20/2009 6:42 AM (GMT -7)   
Hi! Ginny,
Isn't that the pisser of them all? Excuse the bad word, but that's the one I feel? That we don't even have any tears to cry? And that when we get that sick, since we don't think we could feel much sicker, ......that we must, absolutely for sure....... START FEELING BETTER??????? smhair Please ask for as much help as you can get finishing up your work season. Hope you are already feeling much better.
sue

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 9/20/2009 7:10 AM (GMT -7)   
I am brand new, but in your original post you said you felt like screaming, just a suggestion but do it. I have on more then one occasion,very freeing,hold your head and go for it. Best wishes, Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, joining this has been a big step.Husband and son wonderful,but can't step inside,you guys are there.


peedee
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/25/2009 5:18 AM (GMT -7)   
 Ginny ,
     I am not really sure how to do this never felt in the dark before about not knowing things. I am 34 and was diagnosed with lupas in July 2007 after I had to be brought to the hospital because my knee blew up double the size of the other. I often felt like there was something not right I would get so that after sitting for only 5 minutes that I could not stand up straight when it was time to. I gained alot of weight and then lost it again people that dont know me to long can't believe how fast I lost it but for those who know me well know I have always been tiny, well  in 18 mths I went from my normal weight of 110 (which I have always been since I was about 16) up to 165 I could'nt believe it everyone around me could'nt believe it . I have a very active job and its not like I sit around I am always doing something unless I am sleeping I often ask my doctor questions but never get straight answers, wondered if the predisone was what made me gain the weight or just the disease still not sure my doctor took me off predisone in Jan . Thats why I am here I have so many questions but not sure where to go to get the answers google is not doing it for me just brings me back to pages like this one . 



                                                                                                                                                                                             Thank you,
                                                                                                                                                                                                               pd
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