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Post by **Angie** on Oct 16, 2015 3:34:57 GMT
You might want some cheese to go along with my "whine"...
I've been experiencing what is called the "MS (multiple sclerosis) Hug". It's a band of spasticity around my torso. It feels like someone has taken the snowy "off the air" feed from the old tv's and wrapped it around my body from hip to right under my breasts. Constant sensation, like fingers running along my skin from the inside...
It hasn't been too bad, but tonight I'm miserable. I overdid it today with errands so I'm having issues with the "hug" along with my usual symptoms. My medicine isn't helping and I'm planning on sleeping in the recliner because Dh is sick and me constantly shifting will keep him awake.
I go from being slightly uncomfortable to in pain and from "its not too bad" to "if this is not too bad, what the hell is "bad" like?!? And yes, I just realized I'm a bit more depressed tonight than I like.
Anyway, thanks for reading. I just had to get it out. I don't like to worry Dh if he's not feeling well, and sometimes I just don't have anyone to listen to me.
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Post by alissa103 on Oct 16, 2015 3:41:22 GMT
I'm sorry. Gentle real hugs (or not?) from me.
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TXMary
Pearl Clutcher
And so many nights I just dream of the ocean. God, I wish I was sailin' again.
Posts: 2,811
Jun 26, 2014 17:25:06 GMT
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Post by TXMary on Oct 16, 2015 3:43:40 GMT
I'm sorry. That sounds very uncomfortable and painful. I hope you are able to get some rest.
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Post by nlwilkins on Oct 16, 2015 3:46:37 GMT
so sorry you are having to deal with this. Don't apologize for whining you earned it
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Post by elaine on Oct 16, 2015 4:07:45 GMT
I am sorry! That sounds miserable. I hope that you find some comfort soon and get some sleep.
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Post by coffeetalk on Oct 16, 2015 4:09:45 GMT
I have MS too and the ''hugs'' are awful and the first one I ever had scared the socks off of me! Sending gentle hugs and hope that it subsides and you can get some sleep.
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akathy
What's For Dinner?
Still peaing from Podunk!
Posts: 4,546
Location: North Dakota
Jun 25, 2014 22:56:55 GMT
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Post by akathy on Oct 16, 2015 4:25:48 GMT
I'm so sorry, that must be miserable. I have a friend with MS who also has them
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Post by bothmykidsrbrats on Oct 16, 2015 4:27:36 GMT
I'm so sorry you are feeling so crappy. Praying you feel better tomorrow.
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PLurker
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Jun 28, 2014 3:48:49 GMT
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Post by PLurker on Oct 16, 2015 5:28:06 GMT
I'll listen. Chronic stuff sucks! Sorry it is getting to you. (nice)hugs. I've not heard of that. Sounds overly irritating. Feel free to complain away.
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Post by JoP on Oct 16, 2015 5:31:31 GMT
I'm so sorry, hopefully you can get some rest
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Sue
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Posts: 3,234
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Jun 26, 2014 18:42:33 GMT
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Post by Sue on Oct 16, 2015 5:34:35 GMT
I'm sorry you're feeling so miserable. I hope the sensation subsides so that you can get a good night's sleep. Thinking positive thoughts for you.
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The Birdhouse Lady
Drama Llama
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Posts: 7,175
Location: Alaska -The Last Frontier
Jun 30, 2014 17:15:19 GMT
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Post by The Birdhouse Lady on Oct 16, 2015 5:39:22 GMT
That sucks! I hope you can get some sleep tonight.
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oaksong
Drama Llama
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Jun 27, 2014 6:24:29 GMT
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Post by oaksong on Oct 16, 2015 5:49:22 GMT
I am so sorry you're miserable. Hopefully this will pass. I have a coworker who is just starting to have that symptom of MS. Are you in a support group? She seems to find it worthwhile and likes the people in her group.
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M in Carolina
Pearl Clutcher
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Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Oct 16, 2015 5:54:29 GMT
I am so sorry. I have MS as well, but I haven't experienced that particular "hug". Sounds horrible.
I get muscle spasms. If I move wrong, bend down, stand to long, the muscles in my back and abdomen start to spasm. I especially love it when the muscles around my diaphragm spasm into my poor, swollen pancreas. Fun times.
I feel bad that I can't do anything around the house. I did make my dh a latte this morning when he was involved in a case and couldn't get downstairs from his home office to get his morning joe.
The 3 minutes of standing in the kitchen to make the espresso and warm the milk, plus going up the stairs, kicked off the spasm in my back.
The back spasms on my spine have caused spinal headaches. It feels like this pressure in my spine, and it "vibrates" to my heart beat.
Today I felt like my spine was the size of a telephone pole and was squeezing the rest of my abdomen out of my body. I couldn't even eat because it made me so nauseated.
I really need to go see my primary doctor for a follow up/yearly exam, but I had to cancel this week because I've felt so bad. Even just reclining in my chair makes me feel weak and dizzy. Today was even worse.
I needed to call my mom back to tell her I was alive, but I felt so bad I couldn't even stand to talk. Thankfully she understood today. I did talk to her this evening.
MS is horrible. I feel like the MS has a big wheel with different symptoms on it, and every day the wheel gets spun around and different weird symptoms appear.
I don't think anyone should feel bad about venting about being sick. MS is horrible, but I still don't feel as close to death as I did the last time I had influenza. People who deal with chronic issues have to be tough, but it does help to talk to people who understand. My poor dh is so stressed, and I hate to worry him more when he can't do anything. He feels powerless enough already.
My cat Ziggy, who can tell when I don't feel good, has been my constant shadow, having to touch me at all times. His presence actually does make me feel better and calmer, and the purring really helps. Scientists say it's because the frequency of the purr is at a range that is therapeutic for humans to hear and feel. I'm so glad he loves me so much. It's like he totally understands that we rescued him from the streets, and he's so grateful that he's my constant companion.
His constant shadowing does tip dh off that I'm feeling a lot worse than I'm letting on. Little stinker.
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Post by miominmio on Oct 16, 2015 10:20:15 GMT
Oh, that sounds awful! I hope you feel better soon.
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Post by flgirlatheart on Oct 16, 2015 10:44:37 GMT
I'm sorry you are going through that! It sounds terrible
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Post by emelle64 on Oct 16, 2015 11:02:08 GMT
That sounds miserable. I hope you managed to get some sleep last night and today will be a better day.
Emelle
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eastcoastpea
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Jun 27, 2014 13:05:28 GMT
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Post by eastcoastpea on Oct 16, 2015 11:03:12 GMT
I'm sorry that you're feeling so crappy, Angie. I hope you feel better soon.
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Post by anxiousmom on Oct 16, 2015 11:05:02 GMT
I'm sorry. I hope you were able to get some rest...and that today is better day for you.
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Post by gailoh on Oct 16, 2015 11:06:07 GMT
Honey we will listen. I don't know anything about this but I can learn if you just want to talk about this.
It is sometimes better to talk to a stranger then family, don't know why but it does seem to help. I have had several conversations just standing in line or at the grocery stores....lol...a lady in her 70's and did not look like it, got me on to the FitBit steps...I don't always get to the 10,000 steps but at least I am moving more when I wasn't before. She looked good and said she felt better after losing 30 pounds...but it was a stranger that helped me.
Talk away ...we listen...hugs
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purplebee
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Post by purplebee on Oct 16, 2015 11:09:08 GMT
Hope you will have a better day today, Angie and M. I have a close friend with MS and I know how difficult it is. Cyber hugs to you both.
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Post by Spongemom Scrappants on Oct 16, 2015 11:25:26 GMT
I'm sorry you are experiencing such bad symptoms. I hope this passes and you have a better day today.
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Nanner
Drama Llama
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Post by Nanner on Oct 16, 2015 11:57:26 GMT
I'm sorry you're going through that - it sounds just awful! Hoping your day today is better.
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Post by mikklynn on Oct 16, 2015 12:43:28 GMT
**Angie** and m in Carolina I'm so sorry you are both dealing with MS. I hope you both have better days ahead. Thank you for sharing your descriptions for those of us who don't know what it's like. DH and I have a friend with MS, but she is very private regarding her health, which we respect. Your words give me new insight into her life. Hugs.
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bklyngal62
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Post by bklyngal62 on Oct 16, 2015 12:52:27 GMT
Hope you get some rest and feel better soon.
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Post by jeremysgirl on Oct 16, 2015 14:14:50 GMT
This sounds horrible. You poor thing. I am hoping you start to feel better and can at least get some rest.
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scrappert
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Post by scrappert on Oct 16, 2015 14:35:32 GMT
Whine all you want. I do like to eat cheese with a good whine. Hope you were able to get some sleep last night and are feeling less hugged. Thinking of you.
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Post by Delta Dawn on Oct 16, 2015 15:25:33 GMT
I will give you a *Yubikiri* promise. That's a pinky swear instead of a hug. Hopefully that won't hurt. I am sorry you are miserable. It sucks. It just sucks rocks.
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M in Carolina
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Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Oct 16, 2015 15:51:11 GMT
Thanks for the support everyone. It means a lot. People know all about cancer and can commiserate, but there are other horrible diseases and nobody knows anything about them.
It's difficult when people don't understand that not everyone who uses a wheelchair needs it 24/7 or they're not scamming someone by getting up out of their wheelchair to grab something on a shelf in the store. There's lots of reasons people need wheelchairs.
Angie, I had that weird sensation in my wrist last night. Your description of snow on the tv was so accurate! I'd felt the sensation before but didn't know how to describe it.
I'm so thankful that there are great meds out there to help symptoms and pain. I feel so grateful to be living in this day and age. I can't imagine suffering from MS in another century.
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MerryMom
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Post by MerryMom on Oct 16, 2015 16:18:32 GMT
I thought MS referred to Middle Son at first!!
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