Fibromyalgia and Lupus
By mentalward
@mentalward (14690)
United States
May 19, 2008 8:23am CST
I have both fibromyalgia and lupus. Either one of these is hard to live with, but I'm dealing with both and some days I can barely move. Is there anyone else with either of these, or both? I'm looking for some coping strategies to get me through the rough days because some days I get so depressed and just want to sleep all day. If anyone has any suggestions for coping, please let me know. Thanks.
3 people like this
3 responses
@angepange (123)
• Australia
28 May 08
hi there. you poor thing. i understand how crap autoimmune diseases are. and what sucks is that people dont seem to understand what they are or how they happen, let alone how you must feel on the inside. its true from the outside you look well. people have trouble getting past that.
i personally havent suffered from these diseases, but this is pretty close to it. my daughter is 2 years old and she has overlapping autoimmune diseases. she is still being tested and diagnosed. but she definatley has juvenille dermatomyositis (JDM) which attacks the skin and muscles. and they are think lupus is another contributor. her liver is under attack at the moment. the little one is on steroids at the moment. have you had to go on steroids also, any tips on dealing with the side effects.
i have come across fibro in my hours of endless searching on the net for answers and cures. but answers are hard to find and cures, well we both know there are none. not fair hey.
good luck with your battles in the future. i feel for you. god bless
2 people like this
@moonlitmagikchild (22181)
• United States
25 Jul 08
yeah i have fibromyalgia and i think i have been tested for lupus.. if i did it was negative and i think a group im joined in has a few people with both and they are really great for a support group on livejournal so if you have lj and want the name lemme know.. they are lifesavors
@mentalward (14690)
• United States
25 Jul 08
Thanks so much! I've never heard of livejournal, but I'm certainly interested. Dealing with constant pain is really hard and any support we can get is a real necessity! Any info you can give me will be greatly appreciated!
1 person likes this
@moonlitmagikchild (22181)
• United States
26 Jul 08
http://community.livejournal.com/fibromyalgia/ you might have to join before you can see most post because i know a lot of people put it to where "friends/club members only" can view their post.. but they are a lot of members and its an active club that has helped me out a lot.. pretty much whatever you are going through you can find some one else there similar
@sunnflr (2767)
• United States
8 Jun 08
I do not have lupus, but have been advised to keep an eye out for it. My titer was almost in range the last time. Don't you just love how they want to wait until you are worse before starting treatment? I hope it never gets worse, but I hate not knowing.
I do have fibromyalgia along with Hashimoto's Thyroiditis, which is an auto immune disease. I also have diabetes, IBS, OCD, arthritis, and some other things. I'm falling apart..lol.
I just take one day at a time. I think that's really all we can do. I have to make myself not overdo on the good days because I know I'll suffer for a long time afterwards.
Good luck!