Pain seems to be more related to autonomic issues than mobility issues in a new Parkinson’s Disease pain study. And by extension, it seems likely that’d be the same with Lewy Body Dementia.
Many, if not most, people with Lewy Body Dementia have Parkinsonism mobility issues. Pain, of an often inexplicable source is very common, and has often been believed to be related to lack of mobility from the condition. However, this study concludes that perception of pain is mostly related to central nervous system issues. This implies that for the same pathology (such as osteoarthritis) two people with the same degree of arthritis can sense pain very differently.
- There was no correlation between musculoskeletal pain and motor symptoms
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There was also no correlation between radicular pain (radiating from the spine to extremities) and motor symptoms
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Very weak correlation between lower abdominal pain and constipation scores
Get as much exercise as possible, and as is safe and approved by a specialist. There are few situations when it will be bad, and even if it doesn’t fix all the pain issues, it will aid in sleep improvement. It also usually leads to better mood and any method of maintaining as much mobility and flexibility is beneficial.
Looking for pain relief for my husband with LBD diagnosis.
Hi Sheryl: Sorry for the trouble you’re having finding effective pain relief.
I’m not a doctor, so I’m not recommending anything, only relating my personal experience as a carer. The downsides of so many pain medications are significant, and the one that was most significantly, immediately apparent was the constipation they caused. Digestion and effective processing of nutrition is often very difficult, and this makes for many challenges. I found that Acetominophen worked very well for my mom, and if used as prescribed, was extremely effective — and that surprised several doctors, who thought she’d need some much stronger pain killers for some quite severe trauma.
And early on, she had positive results from Acupuncture, although we didn’t continue it because getting her to the practitioner became infeasible.
I hope you can find things that work for you! You’re doing a very good thing for your husband, as a loving partner, and effective advocate.
Strength to you!
Timothy Hudson
I was diagnosed with Lewybody several weeks ago.
I just have no desire to get dressed. I just want to wear my pajamas.
I have a husband, who is a Pastor, who also has ADHD, and is a narcissist, so now you know what I’m under. So let me say he is a very very busy man.
So if i didn’t have a daughter who works with the family Fire Department and is a Paramedic. I would be alone, but she is such a great help! All of this is new to me and scary.
Thank You, KDH.
Hi. My name is Vera and my husband was just diagnosed with Lewy body disease and Parkinsonism. I am just trying to take it all in.
I hope you got out of your pajamas .
How are you feeling today?
The girl below says she hopes you got out of your pajamas and I’m absolutely positive that she meant well. My mother has Louis body dementia and I hope that you’re doing okay hope that you do whenever you want to do If it is stay in your pajamas then stay in your pajamas. I was at home last year around the time that you wrote this and mom had an accident and went to the trauma unit in Cleveland Ohio. After that she had to go for rehab. She is on Medicare so that meant to stay at the local nursing home. But I have already noticed she preferred to be in her pajamas So I bought her a wardrobe of pajamas and made sure that she had little jackets from clothes that she already had mostly and turtlenecks so that she could wear the pajama bottoms with a regular top and one of those little jackets if she wanted to go somewhere She looks really cute and she’s warm and comfortable she also has ankylosing spondylosis and is in a lot of pain so I hope you do whatever you want I hope you are comfortable and warm I hope you live in the south so you don’t have to face unbearable cold like my mom. I wish your circumstances were better or that I could coach you to do something differently.
I love everybody on here and I wish I could give everyone on here a big hug. I love y’all from the bottom of my heart. My dad has LBD and I’m helping him and raising my son by myself. My little son is 3 years old and cheers me up because he is so funny. It’s a lot of work for everyone but it is well worth it.
I just wanna say again that I love y’all all so much.
Big hugs and kisses from Daniel and Nehemiah.
You’re doing an amazing thing, Daniel, helping your dad with LBD alone would be a huge undertaking, but raising a young son at the same time is superhuman. Long may the funny antics of your son cheer you all up.
Strength and courage to you.
Timothy Hudson
I thank God that you have your daughter❤️Going through this with my brother. I pray for you. Don’t focus on your husband. thats why God blessed you with your daughter. Keep your strength for yourself❤️
I have Lewy body dementia I was diagnosed several years ago and one of the hardest things for me is pushing through the pain I’m in: luckily I have my wife who’s taking care of me but she herself has leukemia. I don’t share with anyone all that I’m going through because it’s very difficult when you feel you no longer have complete control over your body and mind. I feel I don’t want to go out in public much anymore because I’m paranoid, so I’m at home much of the time however we do go to the gym together and walk because I know with this disease the more you keep moving the better. Just wanted to share some thoughts if there’s anyone that’s scared or just wants to talk to me about my experiences I’ll be glad to talk , so I just wanted to share with this group thanks!!
Thanks for your insights, Jeff. And your kind offer for others to get in touch with you. I co-moderate a group on Facebook, which is fabulous, and small and private and only allows people in who are living with LBD themselves — you, and anyone who has LBD might find some amazing companionship and insights there. It’s a great group. Here’s the link — https://www.facebook.com/groups/LBDALivingwithLewy
I hope things go the very best they can for you, and that your wife’s cancer is manageable and effectively treated.
Strength and courage to you!
Timothy Hudson