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Old 09-02-14, 02:35 PM   #1
Zara
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Default Can anyone 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
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Old 09-02-14, 08:06 PM   #2
Cupcake
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Default Re: Can anyone help with persistent arm pain in HD?

No advise or experience in this, sorry, but what a lucky lady to have a carer who is going to the next level to try and find advise on caring for her.

Hope someone can help you.x
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Old 09-02-14, 08:24 PM   #3
battersea
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Default Re: Can anyone help with persistent arm pain in HD?

Hi

My husband often has pain in his shoulder and arm, often worse in the morning. We have tried to get to the bottom of why it happens but despite investigations they came to the conclusion its a trapped nerve. I am not convinced but whose to say. Sorry I can't help you more, he takes pain killers, and also have found putting an ice pack on his neck does relieve the pain for a while, and massaging the shoulder helps as well.

We have tried different pillows which helped a little too. Sorry not to be more help
Take care
Sx
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Old 09-02-14, 08:25 PM   #4
Zara
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Default Re: Can anyone help with persistent arm pain in HD?

Quote:
Originally Posted by Cupcake View Post
No advise or experience in this, sorry, but what a lucky lady to have a carer who is going to the next level to try and find advise on caring for her.

Hope someone can help you.x
Thank you very much for your post, I appreciate it :)
That would be amazing, fingers crossed! x
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Old 10-02-14, 01:36 AM   #5
Allan
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Default Re: Can anyone help with persistent arm pain in HD?

Hi Zara

I don't have HD but I regularly have Tennis Elbow [lateral epicondylitis] and I'm just recovering from a very painful Frozen Shoulder [adhesive capsulitis]. I usually have cortisone injections for the Tennis Elbow and any thumb\finger similar issues. For the current FS I was prescribed Sevredol [morphine sulphate] for immediate pain relief and Arthrotec [diclofenac sodium] for the pain and swelling. Diclofenac is a Non-Steroidal Anti-Inflammatory drug [NSAID]. I also use Traxam\Felbinac gel for immediate pain relief - although this didn't work too well on the shoulder.

I originally thought that my problems might be RSI related as I have been a computer keyboarder since time began. Tennis Elbow originates in the wrist area:

The elbow joint is surrounded by muscles that move your elbow, wrist and fingers. The tendons in your elbow join the bones and muscles together and control the muscles of your forearm.

Tennis elbow is usually caused by overusing the muscles attached to your elbow and used to straighten your wrist. If the muscles and tendons are strained, tiny tears and inflammation can develop near the bony lump [the lateral epicondyle] on the outside of your elbow. [taken from the NHS website]

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.

Could the constant HanD movements be causing an RSI-type injury?

They suspect posture - sitting back in one position for prolonged periods of time

Does the chair that your lady sits on have arms and does she use them for resting her arms on? When I'm using the laptop on my lap I tend to use the arms of my chair so that I only need to use my lower arms for keyboarding - and I think that's what eventually caused my frozen shoulder.

Diabetes can also be a cause of this type of arm pain.

I hope you find the solution soon - as no one with HD should have to be subjected to more suffering.

Best wishes

Allan
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Old 10-02-14, 12:04 PM   #6
Allan
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Default Re: Can anyone help with persistent arm pain in HD?

Hi Zara

I've just been doing a bit more research and haven't come up with anything better than last night's thoughts. It could be connected to your patient's age, stage of HD symptoms, etc: is she able to talk about the whereabouts of the pain and how it occurs?

My son has gastro-enteritis type symptoms and the question being asked is if this is related to or caused by his current HD symptoms - or not? So a similar scenario could be happening with your patient - is it the current HD symptoms [ie the hand clenching and finger movement] causing the arm pain - or is it arthritis [or similar]-based - or could it be lack of upper arm\body exercise?

Best wishes
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Old 12-02-14, 10:38 AM   #7
Gillywig
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Default Re: Can anyone help with persistent arm pain in HD?

Hi,

This may sound odd but it's worth thinking about, I think!!

Over the years my partner has had various pains and sensations. From severe headaches, again the same pain in the shoulder, sore back and feeling constantly sick. never at the same time though. After a while one symptom usually disappears only to be replaced by another. The biggest one, feeling sick has now been replaced with having a cold.

After every test under the sun for sickness eg. urine tests, blood tests, ecg, fasting blood tests etc. the conclusion was that there was nothing wrong! We think that it's an anxiety thing and that it's all in his head. Now he never says he feels sick but tells us he has a cold!! He has had a cold for six months in his head but doesn't at all. It's replacing one obsession with another. I try to think whether he is anxious when he says he has a cold or if he is worried about something. The more worried he is the more he will say it.

It could be the case here as the obsessions are very common.
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Old 12-02-14, 03:25 PM   #8
Zara
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Default Re: Can anyone help with persistent arm pain in HD?

Quote:
Originally Posted by battersea View Post
Hi

My husband often has pain in his shoulder and arm, often worse in the morning. We have tried to get to the bottom of why it happens but despite investigations they came to the conclusion its a trapped nerve. I am not convinced but whose to say. Sorry I can't help you more, he takes pain killers, and also have found putting an ice pack on his neck does relieve the pain for a while, and massaging the shoulder helps as well.

We have tried different pillows which helped a little too. Sorry not to be more help
Take care
Sx
Thank you very much for your reply!
An ice pack sounds interesting - we usually end up applying heat to it, so maybe an ice pack would be worth a try. We will also try using some pillows to try and make the lady I care for more comfortable.

Thanks again :)

Take care,

Zara x
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Old 12-02-14, 03:36 PM   #9
Zara
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Default Re: Can anyone help with persistent arm pain in HD?

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Originally Posted by jacqueline View Post
Hi Zara,
I find that if I take too many painkillers they upset my stomach greatly. I have arthritis in my pelvis so have been using Voltarol Emulgel 1% which does help me a lot and obviously doesn't go through my stomach.
There is also Ibuprofen Gel too. Because the arm is also nearer the bone than my padded parts it would help even more. Any part like knees, wrists and elbows are good. Or if your slim as well helps.
I have never used the next one but I do beleive in its power as a friend bought one and used it. I think in certain circumstances the doctor will put it on prescription too. Maybe not all doctors but lots would. It is a TENS machine which interrupts the path of pain. I have heard great reviews about it too.
There are also heat pads that you can but or get off your doctor which may help too.
Hi Jacqueline,

Thank you for your reply! The gels sound like something that would be worth a try, so will look into those. I am glad that they help relieve any pain that you have :)
The TENS machine sounds great too, especially if it focusses on the nerves. We have ordered one of those so will be giving that a try.

Thanks again! Take care,

Zara :)
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Old 12-02-14, 03:49 PM   #10
Zara
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Default Re: Can anyone help with persistent arm pain in HD?

Quote:
Originally Posted by Gillywig View Post
Hi,

This may sound odd but it's worth thinking about, I think!!

Over the years my partner has had various pains and sensations. From severe headaches, again the same pain in the shoulder, sore back and feeling constantly sick. never at the same time though. After a while one symptom usually disappears only to be replaced by another. The biggest one, feeling sick has now been replaced with having a cold.

After every test under the sun for sickness eg. urine tests, blood tests, ecg, fasting blood tests etc. the conclusion was that there was nothing wrong! We think that it's an anxiety thing and that it's all in his head. Now he never says he feels sick but tells us he has a cold!! He has had a cold for six months in his head but doesn't at all. It's replacing one obsession with another. I try to think whether he is anxious when he says he has a cold or if he is worried about something. The more worried he is the more he will say it.

It could be the case here as the obsessions are very common.
Hi there,

Thank you very much for your reply. I can definitely see where you're coming from! The lady I care for will keep saying 'my arm hurts', sometimes emotionlessly. Like you, we don't know whether her arm is actually hurting or whether she's worried about the prospect of it hurting, and of course we don't like the thought of giving her oramorph for pain that isn't there. So the other day one of the other carers experimented, and next time the lady complained of arm pain, we got the syringe we'd normally use to give her oramorph, put water in it instead and gave that to her. Even though it was water, she didn't complain of her arm hurting after that! Definitely made us think.

Thanks again,

Zara :)
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