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Oct 11, 2015 1:02 PM

Hi guys, I'm new to these forums
I an after insight, personal experiences and some tips to help me out.
I have MS and MG my neuro also days I have Fibromyalgia.

Oct 11, 2015 1:45 PM

Welcome Mels! I have fibro, sjogrens, hypoparathyroidism, DDD, depression and anxiety, osteoarthritis and many others. I have many symptoms of MS and was sent to Mayo for evoked potentials tests, which were negative. I've learned to pace myself, resting when I need to. I use relaxation techniques, music, deep breathing, etc.

This community is filled with people of all ages and from many locations. Everyone is so supportive, offering suggestions, ideas, and comfort. Feel free to ask questions, rant, cry, or offer a laugh or two. I'm sure others will join the convo to offer more advice. I hope you find this app as helpful as I have. I've met so many wonderfully supporting new friends. Good luck getting more insight and help! You'll be in my prayers. 🙏🌼

Oct 11, 2015 3:11 PM

hello flappy.
That kind of so much for replying.
Wow u have so much going on bless ure heart.
I still work full time and am a mummy to a fantastically boisterous little boy and also a wife.
God knows how I do it but I try to tell myself I am OK and this does work but not everyone it is so hard to ignore pain/fatigue and muscle weakness when it's they 24/7.
I know I need to slow down or I'll crash massively but a part of me thinks if I slow down I'll never get back up and I'm scared.
So I take each day as it comes and face whatever it brings to me. I try not to think know of the future if I can hep it but I am stating to feel down/desperate/tearful.
I see my specialist tomorrow and I'm going to bombard him with questions. I dot know if it's the high doses of steroids I take daily that's making me feel this way or if it's disease progression but boy oh boy am I in pain.
What analgesia do u have and does it work. Just so I can mention it tomorrow xx

Oct 11, 2015 4:52 PM

Mels, welcome aboard!!! There really isn't anything that I can add to what Flappsy has already told you. I hope that you find the info, support and comfort that you need being here with us. I have many of the same diseases that Flappsy wrote in her posts and then some. We are all here for different diagnosis and issues but the one commonality is chronic, irretractable pain. I wish you all the best and will keep you in my prayers. 🌻🙏🏻

Oct 11, 2015 8:59 PM

Mels, I feel blessed in that my children are grown and on their own, so I have only myself, my dog, and my hubby at home. He works but I can't any longer. I was shocked but my pcp actually wrote "unable to work any job" in my chart. I wasn't certain he believed me or my hubby because he sends mixed signals. Back to your question on pain meds, I am so allergic to so many meds that I am only using Tylenol Arthritis & Voltaren gel, & Tramadol (at night as needed). I purposely put up with as much pain as possible without meds because of my inability to use strong meds; I reserve what few strong meds I can use for surgery rehab. My hat is of to you and other younger mom's and dad's who deal with the chronic pain and issues while carrying for children totally dependent on them! My voltaren gel is good for deep muscle and spine pain, and night time leg cramps. I use gloves to keep my arthritic hands warm in colder weather. I have a TENS unit which help with sciatica, spasms, or other nerve pain along my spine, back & shoulders. I can't sit too long or I get stiff. I can't stand or walk long or it flares my back pain and hip/knee joint pain, as well as worsens my edema from venous reflux. So I have to rotate my position frequently. I have a history of long term steroid use due to my asthma and epidural steroid injections (injx). I was diagnosed with osteopenia this year by a bone scan, so I'm trying to exercise on a treadmill 2-3 x a at, at least 3-4 days a week. Exercising also helps reduce my pain. Taking things a day at a time, an hour, a intent at a time is important. Resting when you need to, even if only 5 minutes helps. And on days you aren't feeling your best, prioritize and let some things wait until another day. Even with asthma my house has dust. A little dust doesn't hurt, unless it's stored up in the air... Then I sneeze and cough! Lol. Develop quiet time activities for your child. Teach him while he's young that mommy sometimes needs a little extra rest. My 9 to granddaughter has adapted to Granny's changing health over the last 5+ years, and she's come up with some amazing alternate ways for us to still spend time playing. Kids are resilient, and being honest teaches them compassion and being helpful at a young age. My youngest, 27, had to learn to climb in my lap at 2 because that's when my neck issues started; her sister was 6. They adjusted well to my health issues over the past 25 years. Good luck and God bless you with the strength you need, every day! 🙏🌼

Oct 12, 2015 1:10 AM

Thank you so much u have been extremely helpful xx

Oct 12, 2015 2:07 AM

Mels, welcome to this beautiful community of strong, supportive, and caring people.

I am sorry that you're going through this, but as alwayz&flappys put it. You just have to learn to prioritize before you crash. I crashed and burned. It took a while to get back. I will never be back to where i was. Honestly, at first well no not at first it took me years to accept this whole kit & caboddle that I've got. But it's the grieving for my life before.
But I'll tell you what I have living supportive people who remind me to keep going. And that is okay to say no. That was my hardest thing, saying no. I antitank got a poster with a 101 ways to say no. I need to get another copy and hang it up.

Enough about me. I guess I just hope that you find peace and comfort and advice here with our great group of people. (I think i may be babbling.... Sorry for getting all repeat-y ll) just happy to welcome you to the group!


Oct 12, 2015 10:12 AM

You're welcome Mel. There are many in the community who can give suggestions on having to care for small children. Hopefully they will see this post and offer suggestions.

Kitty26, I understand what you said. It took me five years to accept that I'd never return to work, that my life was never going to be the same. Acceptance and learning new ways to adapt to my health, and still enjoy life, was a major key to keep from having a mental or physical breakdown for me. And it took my health deteriorating before their eyes for my family to accept it too. I try to be more active when I can, but I don't push my luck! Lol 🙏🌼

Oct 12, 2015 12:11 PM

Hahaha I hear ya on that girl. I bought a mat and am going to try to begin stretching to strengthen my muscles. Just got to take it out of the box now. Hahaha. 😀💞
I am going to try to get to it before my surgery on Thursday, at least that's the plan ma'am. I know after lifting/dragging the special order, "hate to but have to buy" organic meat I'm going to be one sore puppy. More than usual that is.

Anyway i plan on paying my own thread here soon so I'm not overtaking anyone else's thread 😊

Hope y'all are doing as well as can be. If i could share a picture right now is show y'all my awesome Halloween bat shirt. ;) be well my friends. Our as well. As we can be. Big hugs

Oct 15, 2015 10:32 AM

Welcome Mel to our family of chronic pain. There are lots of caring and compassionate people here who will listen to you, and try to help. You can rant and rave all you want to this is a non judgment zone. I have a Syrinx, Syringomyelia, Osteoarthritis, Fibromyalgia, Degenerative disk disease, and sveral more. I'm 59 and starting over by helping raise my granddaughter she is 5 1/2 months old. I take my hat off to all young Mom's and Dad's raising children while dealing with pain. Like Flappsy said start teaching them quite games while they are young and they will adapt as they grow up. Children are more resilient than we give them credit for.

Oct 15, 2015 2:25 PM

Thank you for ure insight x

Oct 15, 2015 7:44 PM

Welcome Mel. Sorry didn't welcome you yesterday(long story on that). I have 2 compressed discs at L4-5(not fixable), SI joint dysfunction, sacroilitis(bilateral), facet joint arthropathy(L4-S1), chronic MRSA infections(requiring IV antibiotics), asthma, allergies(multiple), dysfunctional uterine bleeding, possible endometriosis, and several others. Currently just on Tylenol ES and Benadryl(when needed). Please feel free to vent and rant as much as needed. Hugs!

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