Restless Legs Syndrome
10,138 members6,262 posts

Mum,dementia, shingles, Amitriptyline and hi!

Hi everyone, just home for a break from caring for my mum so thought i would check in. Thankyou to those members who sent me messages of support and thanks to Elisse for letting everyone know where I had disappeared to.

Its a very difficult situation as my mum who has been showing some signs of memory loss over the last 18 months has deteriorated quite rapidly recently so we can't deny it any longer she definitely has dementia. Until all the tests are completed we don't know which type she has yet. Early testing shows "moderate dementia " On top of that she has Shingles which are very painful. I am spending the majority of my time with her to ensure she eats and is safe (she has taken to wandering )

At her GP appointment last week the doctor suggested Amitriptyline to help with the Shingles pain and to help her sleep. Naturally I voiced my concerns as my mum used to have RLS (which miraculously stopped bothering her when she was aged 80) The GP assured me that as she hasn't had RLS in years she would be fine. I wasn't convinced but my mum wanted to give it a go as she was desperate for a good nights sleep. Against my better judgement she took the Amitriptyline at 10 pm and got straight into bed

Well by midnight all hell let loose. She had the worst RLS and PLMD of her life, both legs, both arms and in her hips. This frail 87 year old lady was in terrible pain from the Shingles, drowsy from the medication and I had to spend all night walking her around the bedroom and rubbing her legs, she was in tears.

This was after 7 years free of RLS and one tiny 10 mg of Amitriptyline caused this reaction. I got in touch with the GP and let rip! ! Why ever do they insist on prescribing this med for RLS? ??,,I have "met "literally thousands of RLS sufferers over the years and know of maybe 10 - 15 who can tolerate this med. For vast majority of us it is POISON.

Anyway it took around 24 hours for my mums legs to calm down and she is now taking Codeine for the Shingles pain which is gradually improving

The dementia of course will only get worse and I don't think she will be able to stay in her own home long term but for now I am doing my best to keep her safe, my brother is doing his bit too but he works full time so is limited as to how much support he can offer, Mentally it is very stressful (when you have just answered the same question for the 50th time lol) .! I a ploughing my way through a mountain of paperwork as everything is muddled and her finances are in a mess. I do feel that I have made some headway though this week and she has signed the relevant papers to allow her medical conditions to be discussed with me which is a big help because of patient confidentiality rules.

The first thing I did was have doctors put on her notes was NO AMITRIPTYLINE EVER.

There's no Internet connection at my mums house but I will check in once in a while when I come home to renew my batteries!

Wishing peaceful nights to you all

Pipps xx

8 Replies

You take care of your mum pipps, she needs you right now. She is your priority over everything else and everyone else. hugs. x


Hi Pippins, glad to hear from you but sorry for what you and your mum are going through. My mother in law just passed for eeeks ago, got shingles four years ago but the darn pain never gave up in her head, she got the shingles above her eye. I just wanted to give you heads up on something you mentioned. My mother also got dementia, I eventually had to put her in s nursing home, I found s beautiful place and is under great care, but before her dementia got bad, we had my signature authorized on all her checking accounts, house utilities etc., so I could hsndle all her business without problems. This was advice from a professional that I hired to get my stepdad in Medicaid here in the USA, she said it was very important to do that so the transition would be easier for her care, I eventually also got power of attorney and was able to sell her home without any troubles. If you haven't done so already, look into it ASAP before she no longer can make decisions. Good luck with your mum, I'm so sorry that dumb doctor made her RLS active again, she certainly didn't need that at this age. I wish you both lots of luck, but don't forget to take care of business, it's very important and that way without those worries you can dedicate better time to her. Take care and I'll say s prayer for you and your family.

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Johannasuar, Pippins has it all in hand. In fact its something important to think about for all of us that are not getting any younger, we never know whats around the corner and will need some one hopefully a close relative who can take care of business and do their best for us. The meds we take for our RLS, is a important thing that our dearest and closest know about so its made sure we get those meds giving when we cant speak for ourselves. Or get giving meds that will not be good for us. :)

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I'm glad Pippins is all set, fortunately I was advised in advance so now everything is easy to take care of. I have a living will, very advisable, and I also keep a list of drugs NOT to be administered incase of an emergency because of my RLS. Nothing is enough when it. Ones to being prepared. I even wrote my sons a long letter with all the info needed for my mothers care, how much I pay for the nursing home, where the monies come from, account numbers etc., should I be unable to take care of her or pre- deceased. Being prepared makes life much easier. Glad to know she's all settled with business.


hi Kim I am so sorry to hear about your mum, I was in the same place as you, ( as you no) a couple of weeks ago when I lost my sister. Its not nice, anyway Kim thanks for your email keep in touch SUE


Very best wishes to you pips x


My wife had the worst case of shingles the doc had ever seen. Terrible pain until she took lyrics (pregabalin). Search topics at for dementia and Alzheimer's. Research indicates turmeric, DHA supplements, and removing some animal products from diet make big improvements. Good luck.


Dear Pippins2, I am so sorry to hear about your mother. Good Lord, if it's not one thing, it's another and for her, it's all three things. Shingles requires a very good narcotic for many, usually stronger than codeine, but if that is what works for her then great! Amitriptyline is generally prescribed for anxiety, not for pain so that diagnosis is absurd and as far as RLS, yes, a great deal of people do not find Amitriptyline helpful in the least so I am glad to hear that she is not taking it. Unfortunately I know little about dementia so I have nothing to share except that my thoughts are with you and your day-to-day struggles and hope that things get better very soon.


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