New to the Forum.....Veteran to the Diseases! :-)

Hello!

Quick who I am....33 years old. Diagnosed with Fibro, endometreosis and inflammatory arthritis since age 19. Being tested for CAPS disease (? don't know; I just go with it!) and ALWAYS being monitored for Lupus and MS.

I have an AMAZING husband of 11 years who has been with me since the diagnoses and 2 beautiful daughters. He may not always "get it" but is always willing to help clean, cook, play with the girls and always lets me nap whenever I need it and for however long I need it!

My mother has EVERY autoimmune disease written, plus a few other illnesses thrown in for good measure! Breaks my heart to watch her suffer and deteriorate right before my eyes. She never stops and never gives up though. I don't know how she finds the strength.

Not too many friends my age, as they get frustrated when I cancel or can't (physically) do things. Especially with 2 little girls (ages 4 and 5), my energy needs to be conserved to spend with them. I am a special education teacher for students with multiple handicaps and Autism. They love me no matter how I look from not sleeping or even if it takes me 5 minutes just tie their shoes!

It's 11:30 p.m. on a school night and I can't sleep (again!) because of this HORRIBLE feeling for needing to move my entire body! It's a horrible "feeling" that I get and I try really hard NOT to move but then it erupts in an all out jerk of the body. So I leave the bed and rock in a chair so my husband can sleep.

Some days I cry.....a lot. Thinking of the mom and wife that I always dreamed I would be. Feeling sad for my girls when some days I don't have enough strength to hold them or I am so exhausted that I fall asleep before they do. Feeling inadequate as a wife and sorry for my husband that he doesn't have a wife that can keep up with him. And of course horrible for crying and carrying on about these issues when my mother is FAR worse than I am and she raised three children during the day and worked nights as a nurse without complaining.

Tried to keep it short....sorry! Looking forward to connecting with people who get it! Oh and if anyone has ANY idea what CAPS is....I'd love to know!

Thanks!

Ifight- welcome to the fibro forum. I am a mother myself and went through that with my husband and children. There were times I wanted to go with them, but I couldn't due to the fatigue and pain. I wish I could say things are going to get easier in life. My advice to you is don't feel guilty and try to find a treatment plan that works for you. You are already blessed to have a husband that already understands. Maybe some good education on fibro and maybe you can reevaluate some things that will make things easier in life. I have learned so much here and took what I learned and applied it. It really turned my health around. As you can see insomnia is very common with fibro patients. The jerking you described is something I sure would get checked out. Sometimes they will order a sleep study and they will catch that jerking. They have meds that can control that. What happens all those sleepless night catch up and cause further health problems. As your kids grow you can teach them that mom going to needed some extra rest and a helping hand. They learn to adapt well and become more empathetic towards others in life. just remember not to feel guilty and don't over extend yourself. I hope you will return.
L

Hi, Ifightforthem, and welcome!  I'm so glad you found us and joined in!  You are describing what I've gone through for years...I think.  When you say you jerk, is it because of your muscles spasming?  This is what would happen to me.  I didn't even want to breathe because even that could get my back muscles in a spasm.  If that's what you are talking about, try a muscle relaxer.

 

I was having a lot more problems this winter, went to see a rheumatologist for the first time (I've had fibro for 25 years) and was diagnosed with a rheumatic disease on along with fibro.  They put me on a muscle relaxer called Robaxin.  I used to take that back in the early 1980's for low back pain.  The first pill would put me to sleep but after that I had no side effects from the medication.  No grogginess, dizziness, I could drive and totally function normally.  I was so happy when they put me on this and now I do NOT get those muscle spasms in the middle of the night anymore!  Thank God!  I sleep great, only get up once a night, too!  So this might be something you might want to bounce off your doctor.

 

You need the rest...especially with teaching AND having two small children!  I don't know how you do it right now.  There are a few other things that I use that do help with pain and fatigue.  I use malic acid/magnesium supplements, vitamin D3 supplements, and an alternative product called Curamin.  There are links in Fibro 101 about the malic acid/magnesium and vitamin D3 supplements and how they work in your body.  So, you might want to check that out too.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine