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Alli

New member
Joined
Mar 2, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
10/2012
Country
US
State
VA
I've had a rough winter, my fibromyalgia and lupus seem to only be getting worse. I've had symptoms since I was 9, but I wasn't diagnosed until age 22. Having a diagnosis is bitter sweet. I have proof that it's not in my head and I'm not overreacting, but it also means that this isn't going to go away. I already take 6 different medications a day to keep it 'manageable' but every few months we have to up the dose because they lose their affect. I get really overwhelmed with the thought that I will always feel like crap.
Every future plan includes the disease. We're planning our wedding and I need to plan in nap/rest times so I don't crash, my dress is strapless and worries me that my ribs will hurt throughout the evening, I'm afraid that my scalp is going to hurt and I won't be able to have my hair done, my concerns go on.
My fiancé wants to help, but gets frustrated because I still hurt and I don't 'think positive'. I feel like my soreness, stiffness, and fatigue are driving a wedge between us. When he wants to go out, I'm stuck on the couch, I need him to help me do my own laundry, or I'm asleep whenever he's home. He never knows what parts are tender when, and I often have to pull away when he touches me. Most of the time we can't even hold hands because the lupus cripples my fingers.
 

HelloDolly

New member
Joined
Mar 4, 2014
Messages
7
Reason
DX FIBRO
Diagnosis
10/2012
Country
US
State
ID
Hi Alli! I must agree with you, this winter has been unrelenting! I can't wait for warmer weather. I too get scalp pain. I thought I was the only one. I wish you the beat for your upcoming wedding
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Alli,
Welcome to the forum. Gosh, between fibro and lupus, it sounds like your really struggling to have a happy realationship and a pain-free life.
I wish I had the magic pill that would cure us all, but sadly I don't.
If you take bubble baths you might try adding a cup of epson salts in the water it might help relax your sore muscles and ease your pain. I certainly hope your wedding goes smoothly and wearing your dress does not cause you chest discomfort. I remember when my scalp hurt very bad, I used to pull up on my hair to relieve the pain. Can you use Excedrin Migraine? It might help stop or lessen the pain.

Look for a cotton fiber thick bed pad to put on top of your regular mattress. These pads are 3-4 inches thick and come in all bed sizes. Some people like the ones made of foam or stuffed with feathers. They provide extra cushioning and help your muscles relax so that you can sleep at night. Also I just thought of aspercream. It comes in unscented kinds and might help with any wedding dress pains so that you could get through the service.

Other members will offer their opinions and hopeful some will work for you. Be sure to read through old and new posts in hopes of finding coping skills. Look forward to seeing you around the forum. :)
 

dorann

Active member
Joined
Jan 4, 2014
Messages
75
Diagnosis
00/0000
Country
US
State
Kentucky
First of all, welcome to the forum. I've not been here for a very long time, but I have found this community to be a great wealth of knowledge and information. They've helped me learn so much more than I ever knew before.

I hope that everything does go well for you with your upcoming wedding.
 

nascarmike

Senior member
Joined
Nov 7, 2013
Messages
227
Diagnosis
06/2013
Country
US
State
rhode island
Hi Alli and welcome to the forums. I can't really think of anything helpful so I will just say good luck with your wedding, and I wish you well.
 

LLM1

Active member
Joined
Jan 18, 2014
Messages
65
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
Md
Hi alli, i have had fibro as longa s i can remember...but not familiar with the lupus...

Things that have helped the most...i have never tried the fibro drugs, but cannot get through the day without anti-inflammatory medication..

For energy i take corvalen m..i use different kinds of topical pain relievers, for example, pain erase..the topical pain relievers help me keep pain medicines way down, because i do not like the side effects.

This has been a very tough winter with this condition. Is lupus also impacted by weather?

Many congratulations on the upcoming wedding
 
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