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Thread: Can anybody help with persistent arm pain in HD?

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  1. #1

    Default Can anybody help with persistent arm pain in HD?

    Hi everyone,

    My name is Zara and I am part of a care team looking after a lady with HD, and for the past six months her life has been blighted by recurring pain in her arm. She had a shoulder scan and that showed nothing, and we have been working our way through every painkiller imaginable to try and tackle it with limited effect. We have moved onto the morphine now, but as well as tackling the pain, we want to find the root cause as we don't want her to be permanently on painkillers. The morphine can also make her quite drowsy which isn't ideal.

    We have contacted GPs, the hospital and physiotherapists, and all are unable to precisely say what the cause of the arm pain is. They suspect posture - sitting back in one position for prolonged periods of time, but that might not be it. At one stage, we suspected dystonia, but health professionals have said that it's not that.

    The onset of her pain appears to coincide with the hand clenching that is common in HD - with the fingers together and the hands pointing inwards. However this may be a coincidence and nothing more.

    I was just wondering if anybody knows what the cause of this arm pain could be, or if anybody has experienced chronic arm, shoulder or bicep pain in HD?

    Thank you very much for reading this, any advice would be greatly appreciated.

    Zara

  2. #2
    Distinguished Community Member tic chick's Avatar
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    hey zara !

    i know HD is a progressive, fatal tic-like disorder. i personally know a family that has been affected by it. several people in the family of my friend have died recently from HD. it is a very sad situation to see a family affected by HD.

    i don't have HD, but i do have tourette syndrome, which is a tic disorder. i can definitely tell you that repetitive, forceful movements of one part of the body do lead to pain. at various points in time, i have had neck pain, back pain and various muscle strains from my tics. my physician and i have worked together to find the solution of a muscle relaxant and a pain pill to break my tic cycle of pain.

    this woman has a fatal disease. i also don't think strong painkillers like morphine are the answer. she has several more years of life and her disease will get progressively worse. she needs to have this time now to be able to remain relatively cognizant so that she might enjoy the company of her family and friends and be able to make sound decisions on her treatment now and her end-of-life issues.

    i don't think the pain and repetitive hand clenching are coincidental, as i have stated. i think this woman needs practical solutions to her problems in the coming years. perhaps her physical therapist or physiotherapist can think of some suggestions to help minimize pain from her repetitive movements. maybe giving her pieces of sturdy foam to clench would help relieve the pain from the constant hand clenching by having the soft foam absorb some of the energy from the clenching. a sleeve of foam around her arm with some lamb's wool inside might keep her arm straighter and prevent her hands from turning inwards.

    i think creative thinking for problems that arise is more helpful than tests and painkillers in fatal diseases. you are not giving up on a patient when you acknowledge that they will die from their disease...it just frees you to think about their comfort and care while they are alive.

    my mom has alzheimer's disease. i know she will die from it or some other condition with alzheimer's as the underlying cause. there have been many times when i have had to talk to the nursing staff and suggest ways of dealing with my mom's sometimes combative and uncontrolled behavior. i have made decisions not to treat my mom for various problems she has. i do not wish to inflict further suffering on her when her time is so short already.

    you might do a search for companies that have products that help people who need protection when they inflict pain on themselves. making this lady comfortable should be a priority.

    bless you for being a part of this woman's care team and i do hope you find ways to creatively deal with her situation so that each day she lives, she can spend doing things she enjoys (up to her capabilities), not visiting doctors who cannot cure her of the disease and related probs she has. at some point she might need strong drugs, but until then...

    jeannie
    Last edited by Moderator #7; 02-10-2014 at 01:06 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  3. #3

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    Quote Originally Posted by tic chick View Post
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    hey zara !

    i know HD is a progressive, fatal tic-like disorder. i personally know a family that has been affected by it. several people in the family of my friend have died recently from HD. it is a very sad situation to see a family affected by HD.

    i don't have HD, but i do have tourette syndrome, which is a tic disorder. i can definitely tell you that repetitive, forceful movements of one part of the body do lead to pain. at various points in time, i have had neck pain, back pain and various muscle strains from my tics. my physician and i have worked together to find the solution of a muscle relaxant and a pain pill to break my tic cycle of pain.

    this woman has a fatal disease. i also don't think strong painkillers like morphine are the answer. she has several more years of life and her disease will get progressively worse. she needs to have this time now to be able to remain relatively cognizant so that she might enjoy the company of her family and friends and be able to make sound decisions on her treatment now and her end-of-life issues.

    i don't think the pain and repetitive hand clenching are coincidental, as i have stated. i think this woman needs practical solutions to her problems in the coming years. perhaps her physical therapist or physiotherapist can think of some suggestions to help minimize pain from her repetitive movements. maybe giving her pieces of sturdy foam to clench would help relieve the pain from the constant hand clenching by having the soft foam absorb some of the energy from the clenching. a sleeve of foam around her arm with some lamb's wool inside might keep her arm straighter and prevent her hands from turning inwards.

    i think creative thinking for problems that arise is more helpful than tests and painkillers in fatal diseases. you are not giving up on a patient when you acknowledge that they will die from their disease...it just frees you to think about their comfort and care while they are alive.

    my mom has alzheimer's disease. i know she will die from it or some other condition with alzheimer's as the underlying cause. there have been many times when i have had to talk to the nursing staff and suggest ways of dealing with my mom's sometimes combative and uncontrolled behavior. i have made decisions not to treat my mom for various problems she has. i do not wish to inflict further suffering on her when her time is so short already.

    you might do a search for companies that have products that help people who need protection when they inflict pain on themselves. making this lady comfortable should be a priority.

    bless you for being a part of this woman's care team and i do hope you find ways to creatively deal with her situation so that each day she lives, she can spend doing things she enjoys (up to her capabilities), not visiting doctors who cannot cure her of the disease and related probs she has. at some point she might need strong drugs, but until then...

    jeannie
    Hey Jeannie,

    Thank you very much for your response :)

    I hope the muscle relaxant/pain pill are working well to relieve your pain and muscle strains, it's not nice to have to go through all of that.

    I think you're right about the morphine, the lady I am caring for has been taking morphine tablets for the last weeks, which release morphine slowly and give constant pain relief. However, they seem to knock her out more than the oramorph did! So we have taken her off them for now and waiting to hear from the doctor with regards to what to do next.

    Those are great ideas, we have found a foam ball for her to clench, and we have ordered a foam sleeve to see if that helps as well. That is true, I know that the HD won't go away, our main aim is to make the rest of her life as enjoyable and comfortable as we can.

    I am sorry to hear about your Mum, but it's good that you're communicating with the nursing staff about it and discussing things.

    Thank you very much, I am hoping we can find a solution. Thank you also for all of your suggestions, I really appreciate it, and I can assure you we are going to try all of them :)

    Take care,

    Zara

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Zara)))))) ~

    Welcome to BrainTalk!

    Bless you for your care and concern for this lady, who is suffering with HD.

    Jeannie gave you excellent suggestions and advice, and I concur with her. While I don't have experience with tic disorders, I do have experience with pain caused through tension and repetitive movement. My son seized every day for 22 years, and his arms and fists were clenched so tight for long periods, which caused him pain throughout his arms. I have RA and a fairly good quantity of stress, which often causes me to tense up. I feel pain the next day from that tension. The difference is that I can consciously acknowledge when I'm really tightening up and relax. My son couldn't, and neither can the lady for whom you're providing care.

    My husband has carpal tunnel syndrome, and that can cause excruciating pain when it flares up, which is typically after he has performed some kind of repetitive movement.

    So, it makes sense logically that your patient's pain is probably related to her hand clenching.

    Jeannie's ideas are wonderful. Placing a soft foam in her hand is a good idea. When my son was on a ventilator in a coma, the nurses placed rolled washcloths in his hands, to prevent them from curling.

    She may have a pulled muscle or ligament in her arm. Relief for that can be found in Witch Hazel, as odd as that sounds. If she can identify for you the location of her pain, try soaking a gauze pad, or a paper towel, with Witch Hazel, then wrap it around her arm, and tape it so it stays on. It can stay on indefinitely, and you can always re-wet it with Witch Hazel. It is cool, soothing, reducing bruising, swelling, blood clots. It works, and I've done this for many years with great success.

    Another option is massaging the area with Aspercreme. Or use a Tiger Balm or Salon Pas patch on the area. Perhaps a heating pad for 20 minutes might help.

    If it is possible to reposition her more frequently, so that she doesn't become dependent on one side or position, which will affect her lungs, mobility, and spine, then I highly recommend that you try. Use pillows to prop her up, or get creative with towels and pillow cases to make support for her. The goal is always comfort.

    Please keep in touch with us to let us know how you and your patient are. I hope that some of what Jeannie and I have offered will help you both.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #5

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Zara)))))) ~

    Welcome to BrainTalk!

    Bless you for your care and concern for this lady, who is suffering with HD.

    Jeannie gave you excellent suggestions and advice, and I concur with her. While I don't have experience with tic disorders, I do have experience with pain caused through tension and repetitive movement. My son seized every day for 22 years, and his arms and fists were clenched so tight for long periods, which caused him pain throughout his arms. I have RA and a fairly good quantity of stress, which often causes me to tense up. I feel pain the next day from that tension. The difference is that I can consciously acknowledge when I'm really tightening up and relax. My son couldn't, and neither can the lady for whom you're providing care.

    My husband has carpal tunnel syndrome, and that can cause excruciating pain when it flares up, which is typically after he has performed some kind of repetitive movement.

    So, it makes sense logically that your patient's pain is probably related to her hand clenching.

    Jeannie's ideas are wonderful. Placing a soft foam in her hand is a good idea. When my son was on a ventilator in a coma, the nurses placed rolled washcloths in his hands, to prevent them from curling.

    She may have a pulled muscle or ligament in her arm. Relief for that can be found in Witch Hazel, as odd as that sounds. If she can identify for you the location of her pain, try soaking a gauze pad, or a paper towel, with Witch Hazel, then wrap it around her arm, and tape it so it stays on. It can stay on indefinitely, and you can always re-wet it with Witch Hazel. It is cool, soothing, reducing bruising, swelling, blood clots. It works, and I've done this for many years with great success.

    Another option is massaging the area with Aspercreme. Or use a Tiger Balm or Salon Pas patch on the area. Perhaps a heating pad for 20 minutes might help.

    If it is possible to reposition her more frequently, so that she doesn't become dependent on one side or position, which will affect her lungs, mobility, and spine, then I highly recommend that you try. Use pillows to prop her up, or get creative with towels and pillow cases to make support for her. The goal is always comfort.

    Please keep in touch with us to let us know how you and your patient are. I hope that some of what Jeannie and I have offered will help you both.

    Love & Light,

    Rose
    Thank you!

    I am sorry to hear about your son, I hope there was something that relieved the pain in his arms. That's a good point - usually if one of the carers starts moving the lady's arm around, it is quite clenched and yet the lady doesn't realise this.

    I think you're right, the hand clenching must have something to do with it. I would agree, I have found a foam ball that could be used for the lady to hold, and see if that helps.

    I think the witch hazel, aspercreme and tiger balm would definitely be worth a try. We have tried using heat patches, although haven't had much success with those unfortunately.

    Repositioning her more frequently is a good idea too - especially as she usually stays in the same chair for long periods of time. We have another chair in the room which we offer to her sometimes, to give her a change in posture, however she usually says 'no thank you'. We'll see what we can do though.

    Yes definitely, thank you very much for everything you and Jeannie have suggested! I will be trying all of those things, and just see where we go from there :)

    Take care,

    Zara

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