Need help for mom

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Polar Bear
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Location: United Kingdom

Re: Need help for mom

Post by Polar Bear »

I've got the pain in the butt bones, can't sit comfortably, in my case it is osteoarthritis in the lumbar back.
This is what doc and xrays come up with although to me it really feels like pain right in the hip joints which in turn scoots down the leg.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

T Brenner
Posts: 9
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Post by T Brenner »

Hi All,
It is now 2019 an update on my mom. She has been on Methadone since May of 2014. The good is the RLS is gone or controlled and hiding. The bad the Methadone makes her very very sleepy, her teeth are not good and if she is late on a dose she is frantic.
She has had another knee partial replacement 2 years ago in which she had 2 seizures coming out of surgery. She has recovered from that slower and dizzy all the time. Probably due to the seizures. Anyway I just wanted to give you my input. I have not read through these blogs for a couple years and will do that now. I think the big part of her problem is she just wants to check out.

T Brenner
Posts: 9
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Post by T Brenner »

... her doctor, in Montana, is now going to slowly take her off the Methadone and try something else. I am not sure what. I will meet with him when I go to Montana next week. I want to make sure he knows something about RLS.

Thanks,
Tammy

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Need help for mom

Post by Rustsmith »

Tammy, you might want to print out a copy of this paper, just in case. Better to have it an take it home with you than to need it and not have it if the doctors says that (s)he wants to try something other than an opioid.

https://www.mayoclinicproceedings.org/a ... X/fulltext
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

T Brenner
Posts: 9
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Post by T Brenner »

Thanks so much! I will

badnights
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Location: Northwest Territories, Canada

Re: Need help for mom

Post by badnights »

I hope this doctor is concerned about her daytime sleepiness and not about opioid prescribing consequences. I can't see a non-opioid med working for her, although getting off the methadone with its long half-life would probably be good.
, o
The doctor might suggest the rotigotine patch. Rotigotine is a DA, like pramipexole. She has augmented horribly on levo-carb and quite possibly the pramipexole too, so DAs should be out of the question for long-term daily treatment. There has not been enough research on that, though, so some doctors might insist she try rotigotine. That would be unfortunate, she would have to keep an eye out for returning symptoms and get to the doctor about it right away.

If the doctor suggests any other dopamine med, she/he knows nothing about severe refractory WED/RLS and should not be trusted with decisions that will affect her life - unless she/he is willing to learn.

Anti-convulsants don't seem to cut it for people who have augmented, so if she/he suggests gabapentin, Lyrica/pregabalin, or Horizant as a monotherapy, that also is a bad sign. The most reasonable option for her would be a different opioid, one with a shorter half-life, like extended-release hydromorphone or oxycodone.

I was also wondering if her current methadone dose might be too high. You said she was first given it the same night she was taken off levo-carb, when she would have been augmented and would have needed much more methadone than after the withdrawal was complete. You said she was taking 1 to 3 pills daily back then; if she's still taking that same amount, it might be excessive.

Anyway, those are just some things to keep in mind, and remember to have that paper about opioid treatment for WED/RLS in hand when you go. Read it beforehand to give yourself the confidence you might need to talk about these things. I hope you are taken care of just as well if you should need help when you're your mom's age.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

T Brenner
Posts: 9
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Post by T Brenner »

Good Evening,
I hope this finds you all without Covid 19 problems. I am returning here to let you know that my mom passed on September 30, 2020. Up to her passing her RLS remained. She had many other complications of which combined were not treatable.

She had Dementia which really went south in January of 2020. After many falls at home and not being able to care for herself, she was put in a nursing home in July. It was so heart wrenching as she did not understand why she was there. Then to top it off we could not see her. She passed from infections and kidney failure.

My observation of RLS, at the age of 60, has lead me to believe that diet, exercise and some before sleep mind control have helped me. By mind control-- I mean that I sometimes can stop it if I catch early at bedtime by not concentrating on my legs and switching my mind to something else. Also, a glass of milk and sleeping on my stomach.... weird I know... The Diet will come into play if I eat sugar or drink alcohol, it will trigger my legs. The exercise comes into play if I walk or exercise before bed I usually do not have any leg issues. My siblings and I all have some RLS only one takes medication ( Gabapatin ).

I just wanted to reach out and give you an update. Mom suffered for years with RLS and had many medications. I truly hope one day that someone can figure it out.

Thanks and my Well Wishes to you all.
T. Brenner

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need help for mom

Post by badnights »

Tammy, thanks for letting us know. I am so very sorry about the way your mom went. I just lost my mother, almost identically. She had Alzheimer's and had to be moved to a home in 2019. The lockdown was extremely hard on her, mentally and emotionally - - but also physically because the home she was in abused her by neglect.

She, too, ended up with a UTI which became a bladder infection which became systemic. Part of the problem was that the UTI caused a general decline, which is common in Alzheimer's, her swallowing became impaired, but the overworked staff didn't notice that she wasn't swallowing her antibiotic pills. Hence the infection never got better- and the staff didn't notice.

I travelled there and spent 4 weeks with her - she went into the hospital, was back in the home for 2 days and developed pneumonia from aspirating food, back to the hospital, and she never recovered. It was a brutal 4-5 weeks, forced to make hard decisions that broke my heart over and over again. She died a week after I got back home, but I watched her go on Whatsapp, my sister was in the room with the phone propped up, we listened to the space between her breaths get longer, until finally there was no more breath.

I am glad you came back here, you might want to keep visiting now and then. Diet and mental outlook are big, for sure. My husband swore by sleeping on his stomach - me, I need a complicated stomach position with legs and arms bent, supported by pillows under my torso and hips. Alcohol is a trigger for me, too. Some wines I can drink (organic? Sulfite free? I'm not sure).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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