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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/25/2009 3:35 PM (GMT -7)   
How are you doing today? Feeling any better? Will keep the sending the prayers your way!!!!

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/25/2009 5:27 PM (GMT -7)   
Hi Amy,
 
You're such a sweetheart!  Thank you for checking on me.  I'm having another hard day.  Lots of muscle pain and fatigue.  I tried to do a small grocery shop this afternoon, but the fluorescents had me running out the door after only 5 minutes.  I got home and had lovely pink welts on my forehead.  I can now spot the trend with these welts.  I get them when I'm under fluorescent lighting, but not from the sun.  Interesting eh? 
 
I have a headache tonight and my neck is incredibly sore and stiff.  I really need to get back to PT.  I'll go in tomorrow and make an appointment.  It's the only thing that helps with the Fibro in my neck. 
 
Feeling way older than my 35 years right now.  How are you doing?
 
Thank you again for checking on me Amy.  I'll talk with you soon!
 
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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/25/2009 5:39 PM (GMT -7)   
I wish things where better for you! That is very interesting about the floresent lighting, if you wore sun screen does it help? I hope you can get an appointment asap so they might be able to help you get out of this flare! Can they increase the dreaded prednisone? Would that help a Fibro flare?

I am doing as good as can be expected on a cold rainy night! But we need the rain so I can't complain about it too much! Today I got the clear from my rhuemy to go back to school to get my LPN...Well now I am furious with myself for taking the easy classes in high school! I took Tech Math 1 and 2 and didnt take Algebra or geometry so now its gonna take me twice as long to get my LPN license. Which when I mean twice as long I mean like 10 times the normal because it would have to be night classes after a full time job because I have to keep my job to keep my insurance!!!And then counting in any time I might need to take off due to health problems. Oh well....I guess that is what life is about. Making mistakes and learning from them.

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/25/2009 6:14 PM (GMT -7)   
Hey Ginny:

I'm sorry that your Fibro is flaring up so much. I hear ya on the stiff neck issues. My fibro is so bad I feel as if I never will have loose muscles in my neck again.

I just wanted to say hi and let you know I'm thinking about you and wishing you the best. You're in my prayers and I hope that your headache leaves soon and tomorrow is a better day for you. Take care of yourself and looking forward to hearing from you again soon.

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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/26/2009 7:32 PM (GMT -7)   
Ginny-- I hope you are feelnig better. I know that sensitivity well and believe it or not, found out that one of the non-essential, replaceable drugs I was on was making it way worse. I didn't know it but most porphyrias (which feature an allergy to the sun) are caused by the liver. That is one of the reasons drugs can cause sun sensitivity, it affects the part of the ilver that produces porphyrins. Anyway, by going to the first site there is an explanation about liver and porphyria and the second site is a drug list of safe and scroll down to the unsafe drug list. For me, SOMA was a real killer, so Iswitched to Volteren cream. Way better within 24 hours. Often, just changing or eliminating one really bad drug can make life sane again. It can be very very serious and it is a misunderstood and I think underdiagnosed condition. Sorry the site is a second hand one but the porphyria association website is down for remodeling. I hope this helps you, it really helped me.
http://ardethsmistress0.tripod.com/id29.html

http://ardethsmistress0.tripod.com/id30.html
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

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