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Hayleywart

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Joined
Oct 18, 2009
Messages
17
Reason
Loved one DX
Diagnosis
08/2009
Country
UK
State
Aberdeenshire
City
Aberdeen
I spend half my time on this site browing the 'Do I have ALS' section, because I worry so much I have ALS like my Mum. My Mum was diagnosed in August this year, and has deteriorated very quickly. She is now no longer to do anything at all for herself. She can't walk, and has no use left in her arms, and her voice and swallowing are now pretty bad too.

Although we do have carers in twice a day, I am her primary care giver. As far as I can gather, her ALS is 'sporadic' in that there are no other known members of her family with ALS. However, I have pain in my right arm and shoulder, just as Mum does. (I know it is not normally a symptom of ALS, but my Mum has a lot of pain) Sometimes my right arm feels weak, and of course I get lots of fasiculations, all over my body, but most of all in my right arm. I like to think it is stress and I am usually ok in the mornings, it gets bad in the evenings.

I just wondered if it may be 'sympathy symptoms' and if any other care givers on here feel symptoms similar to those experienced by the people they are looking after?
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
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California
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Los Angeles
I'm sure stress has a lot to do with it. I don't know about ALS caregivers, but when my mother had cancer, I was acutely aware of every symptom in me that could possibly be related. Seeing any disease up close makes you hyper aware of the symptoms.

Take good care of yourself, too!
 

Zaphoon

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Joined
Aug 2, 2008
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2,855
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DX UMND/PLS
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08/2011
Country
US
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Missouri
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Springfield
Haylewart,

I've not heard of "sympathy symptoms" involving ALS caregivers. It might be best for your own peace of mind if you were examined by a doctor. Otherwise, the worrying might drive you nutty.

Zaphoon
 
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duplinwino

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Joined
Mar 14, 2007
Messages
101
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Loved one DX
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US
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NC
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Could it be injury due to caring for her? I know I have to tug and pull on dh all the time, though he's 200lbs, but just a thought.
 

thelma313

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Montreal
My dad has a lot of pain in his shoulder and arm due to pulling himself up using the poles that were installed next to his recliner. This repeated motion has actually resulted in tendinitis in his left shoulder (as if he didn't have enough on his plate with the ALS!) Anyway, perhaps you and your mom are experiencing something like that too? As duplinwino suggested, maybe you are straining yourself caring for your mom?

Also, I do think sympathy pains are quite common in any disease or condition. I've heard men say they felt sympathy symptoms mimicking their wives' pregnancies. If you are close to someone who has a particular disease or condition, I think it's normal. Heck, I get sympathy symptoms when I watch House!

Caring for someone with ALS can be an incredibly challenging and stressful process. Bless your heart for taking such good care of your mom and always feel free to come here for support.
 

asantiago

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Joined
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273
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US
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OK
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Glenpool
I have a question regarding your mom's pain. Do you do range of motion exercises for her on a regular basis? My mom only experienced pain if we didn't do her range of motion exercises twice daily.
 

daughter01

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Joined
Oct 31, 2009
Messages
16
Reason
Loved one DX
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US
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PA
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Harrisburg
I know what you mean about sympathy pains! Ever since my mother was diagnosed I always notice now when I choke on saliva or have an odd feeling in my arms or legs. I think when you spend so much time studying an illness, it is bound to happen! (like psychology students always think they have every thing they study!)
 

son1

New member
Joined
Oct 23, 2010
Messages
1
Reason
Loved one DX
Diagnosis
08/2010
Country
US
State
ma
City
boston
I think sympathy symptoms are completely normal. My father was recently diagnosed with bulbar ALS. In the following month after his diagnosis I started to feel tingling in my tongue, and muscle twitching in my tongue, back, arms and legs. Pleased to find your post.
 

Madonna

Member
Joined
Jul 8, 2010
Messages
12
Reason
Loved one DX
Diagnosis
09/2009
Country
AUS
State
Queensland
City
Ipswich
I know exactly what your are talking about. I have almost sent myself crazy thinking I also have symptoms. I really do believe it is the enormous stress you are under. I have also found myselff forgetting everything and doing things like putting milk in the pantry
 
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