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
Hello: My father is now coming up on his 3rd year of being diagnosed with Lewy Body Dementia. I’ve been noticing my father suffering from automatic issues and I decided to have him trying 10mg THC gummies in the AM and then in the PM: it has worked wonders for him. I would say if it’s legal in your state maybe try something like this.
Hi Rebecca — I also believe that CBD/medical marijuana can help some people. If it was legal when my mother was still alive, I’d have investigated whether it was possible for her, too.
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
Prayers always to both you!
I am a 79 year old male living in Dallas with my wife and silver Schnauzer Jesse. She (the dog) was given to me as a Christmas present. She is delightful and has a precious but quiet personality.
I was diagnosed 4 yrs ago and am experiencing most of the classic symptoms. Most are mild so far but balance is most significant.
My wife, my wonderful caregiver, is so special. We complement each other. She puts others first and I always put me first.
I have a strong positive attitude as a committed Christian. I’ve had 3 careers: flying in jets off an aircraft carrier, as a business executive and business coach. I just finished my memoir but won’t state title lest I come across as advertising. I just want all to know that I’m doing well and am encouraged by their stories.
Be blessed. Ed Allen.
Glad to hear you’re doing so well, Ed! It’s a tribute to both good fortune (amidst the bad luck of having LBD, unfortunately), plus the great care provided by your wife, the tail wagging of Jesse the shnauzer, and your sense of humour. Long may all these positives last!
Strength and courage to you.
Timothy Hudson
My 90 year old father has just been diagnosed with Lewy Body Disease. It’s hard to tell from moment to moment how much is the disease and how much is just age. My step mother has convinced him that he needs to stay in the house but I know that with this disease movement is imperative. She and I absolutely do not see eye to eye. They have not been together in over 20 years but he would not divorce her and now we’ve come to an impasse. The 1st of September my husband and I brought him up to our house on the river (which he absolutely loved) and we celebrated his 90th birthday along with his best friend and his grandkids and great grandkids. He was great and was moving around like a charm. After he went back home he severely declined in a little over a month. After a brief stay in the hospital he has been moved to rehab. When I left there Sunday he was in good spirits and doing good. In 2 days with her there he seems to be declining faster and now seems to be giving up. I want to bring him home with me and she doesn’t care because she doesn’t want that burden I’m just not sure if we can even get him to a point where he can come. I’m so scared and unsure of what to do to help him.
That’s a very, very difficult, complex scenario, Susan. Sorry it’s happening. It might well be that living with you would be best for him, if that is possible for you and your family to manage his care. One thing I’d consider is that people with LBD often do remarkably well in some social situations, but it takes a great deal out of them, and following an “up” period like this, there is often a big downturn to recover from the cognitive expenditure that’s required. That might be a contributor to your father’s decline after great periods with you. However, the great benefit you have on him, and positive, active environment may be enough that it could help him significantly. Very hard to know without trying it out.
Whatever you decide is the right choice, because you have his best interests at heart.
Strength and courage to you.
Timothy Hudson
My name is Kristi. I’m 60 years old and I was diagnosed with LBD in 2020. I was born with Osteogenesis imperfecta which is a mouthful for Brittle bone disease. Because of this I have been in a wheelchair my entire life and now am mostly wheelchair/bedbound. The reason I’m telling you all of this is because I’m having an excessive amount of pain both because of my OI, ( I’ve had well over 300 fractures ) but now the LBD. Because I’m non-ambulatory it’s hard to control my pain with exercise. Any suggestions on how I can improve my movement while being confined to my chair and bed would be so welcome. Right now I’m on heavy narcotics to control the pain but these, of course wreak havoc on my kidneys . My mom, who also died from LBD passed away when her kidneys shut down. So this is my greatest fear
Hi Kristi: That’s such a rough combination for you! I’m very sorry for how things have turned out, in many areas — so very unkind.
As for the pain you are getting, I’d investigate two options — Magenesium has helped some people I’ve known with LBD, and it’s possible that if it’s pain from the Parkinson’s Disease aspects that usually go with LBD, many people are prescribed Sinemet/Carbidopa-levodopa. But as with all things, you should discuss and consult with a specialist.
I hope you find something that helps!
Strength and courage to you!
Timothy Hudson
My mom has LBD and I feel like no one on her medical team knows what to do about it. They put her on seroquel which immediately caused a complete psychotic break which put her in the hospital and I had to invoke medical power of attorney to get her off it, within 24 hrs she was making sense again but now she won’t stop screaming in pain and nothing seems to touch it except narcotics which make her very sedated and not making sense again. There doesn’t seem to be any reason for the pain but the doctors just shrug and say it’s arthritis. Well, a month ago she had no pain, and scans show she has very mild osteoarthritis in her knees so I don’t think it makes sense for her to be screaming like she’s being murdered and asking me if she has died and is in hell because of arthritis. I read that LBD can cause pain and that was news because no one on her treatment team seems aware that’s a thing.
Acetaminophen doesn’t seem to touch it. CBD helps enough to allow her to sleep but makes her very confused and it’s not strong enough to allow her to exercise. At this point she has gone from trotting all over the house with a walker to completely bedridden and refusing even to stand to transfer to a commode, and the PT refuses to work with her because she’s non-compliant.
What do I do? No one is giving her a referral to anyone who would know anything and I don’t know where to start looking. Who should I be trying to get on her team? How do I get them to take her problems seriously? The home health aide kind of shrugged and said she should be on hospice because she’s clearly going downhill fast, but it’s my understanding she could live for years with LBD.
Hi Allie: Sorry for what’s happening with your mom. Such dramatic shifts are absolute torment for her, and for you, and all involved in her care.
I found that I had to do nearly everything myself, rather than rely upon aides or therapists — they’d perhaps provide guidance of what should be done, particularly in terms of mobility, but I had to do the actual work. There was no other way. Were I to have relied upon them, I’m certain my mom would’ve had infintely worse quality of life and a much shorter one as well.
As for the pain, it’s often impossible to know the cause — could be neuropathy or something akin. The Parkinsonism elements of the condition can lead to stiffness and muscle contractions, and this may be part of it. A doctor or specialist can hopefully provide you with further insights. I am neither, so I only speak from experience, not profession.
I don’t really have any other suggestions for you, other than continuing to actively advocate for her, to get her the best attention possible. For me, this was needed throughout. Whatever you achieve, even if it’s nearly opposite of what you wish is infinitely better than what’d befall your mom were you not to be so actively involved. Be proud of that, if you can. You are making a difference, and working in her best interests.
Hoping things turn around somehow.
Strength and courage to you.
Timothy Hudson