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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 Amanda Thorpe

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Posted 27 January 2015 - 03:30 PM

Hello All

 

Now I know that you're not medically trained so I am not after a diagnosis, rather I am curious to know what people think.. 

 

During my first years with scleroderma I also had erythromelalgia which caused a burning sensation in my feet, legs and hands in addition to which the skin on these areas was bright red and you could literally feel the heat coming off of my legs. It was so hot that even in winter I could only have a thin blanket over the affected areas as the heat coming from my legs was enough to keep me warm!

 

Well now I have the burning (and prickling) without the redness and heat in my hands, feet and legs. However this only seems to be at night.  I have neuropathic pain in my feet hands and arms so I wondered if it was more of the same but why is it only an issue at night? I sleep during the day as well you see. 

 

Answers on the back of a postcard! Not really a post will suffice!

 

Take care.


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#2 judyt

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Posted 27 January 2015 - 04:13 PM

Amanda

 

No Idea really!! Just wondering if you are as rare as your diseases :emoticon-dont-know:   Everybody is special I know - but just HOW special do you want to be??

 

So frustrating I am sure and I am sorry you have to put up with one more thing.

 

Best wishes and Love and Hugs,

Judyt



#3 Shelley Ensz

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Posted 27 January 2015 - 07:44 PM

Hi Amanda,

 

Huh. Well, this is one for your doctor, obviously.  But here are a few things that came to mind for me:

 

1. Variation in Medication Levels.  If your medication levels are not consistent around the clock, you might have a reduction in pain control at night.

 

2. Biorhythms.  Our body clock affects everything, including a natural temperature variation during various times of the day and night. You may also be having a naturally higher body temperature at night.

 

3. Lack of Distractions.  This is often a big one for me. Sometimes we can be in a lot of pain but not notice it very much when our mind is occupied on other tasks. But, when we turn off the outside distractions, all the pain and agony comes home to roost. It's not that it's any different really, but rather that we have nothing else better to focus on, so we can't hardly not think about it, and whatever we dwell upon expands.

 

4. Different Ambient Temperatures. Maybe you have windows open during the day, or more air circulation. Even closing doors at night could affect the ambient temperature; or the body heat of another person in bed.

 

5. More Sicker.  It could be that you are more sick, for whatever reason, and it is causing this symptom to be more pronounced.

 

6. Something New. Or, it could be something new setting in, or something masquerading as erythromelalgia, such as cellulitis.

 

Altogether, it's quite curious. So please go to work on the logic of it, see what you come up with, and definitely see your doctor if necessary, of course!

 

:emoticons-group-hug:


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Shelley Ensz
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#4 Joelf

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Posted 27 January 2015 - 09:27 PM

Hi Amanda,

I'm so sorry that you're having even more horrible symptoms than usual; it must be so wearing and debilitating.

I wonder if it could be due to the neuropathic pain rearing it's head again? I must admit I don't really know, although I can relate to Shelley's advice about the lack of distractions. I've found myself that when my brain is fully engaged with something else, I do tend to get some relief from any pain that I'm experiencing. I've also found that things do seem to be worse during the night; there's nothing worse than lying awake, tossing and turning and to have burning extremities as well must be awful!

I really hope that the symptoms ease for you and although perhaps it's a faint hope, maybe your doctor can suggest something to give you some relief?

Best wishes to you,

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#5 Sweet

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Posted 28 January 2015 - 10:44 AM

Wow very interesting that you bring this up. I've had this issue for years, but it is a fleeting one, lasting a few days at a time, and recurring every month or so. I don't know what to tell you, because I haven't been able to get answers either from any of my providers. Sorry, and my heart goes out to you.


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#6 Amanda Thorpe

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Posted 31 January 2015 - 01:46 PM

Thanks so much everyone! Well whatever it was it has gone as soon as it came, I have no idea what or why I am just so glad it has gone!

 

Shelley, I wondered about a two in particular that you mentioned, when medication ebbs and of course the distraction thing. It has been about 3 years since my mp3 player (other devices available) has been my bedside companion (sorry Michael!) and I have the earphones in all the time I am in bed and I fall asleep listening quietly to music or talk radio. I crank up the volume as necessary!

 

Sweet, that would correlate with you, it comes for a few days then goes again. One of those weird no doubt sclero related symptoms we will never actually pin down.

 

Thanks again!


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#7 Shelley Ensz

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Posted 06 February 2015 - 08:39 AM

Well, I need to backtrack a little here.  I just *assumed* that we were discussing an interesting variance in peripheral neuropathy symptoms (worse at some times than others), due to connective tissue disease, and so I was looking for reasons why the pain or symptoms would vary. 

 

I'm pretty sure this is what we were indeed talking about, but for people new to this site or scleroderma or topic of neuropathy in general, here is a link on Causes of Peripheral Neuropathy, which are many and varied.  It's possible that a person with scleroderma could also develop neuropathy from *additional* causes, such as diabetes, infections, medications, cancer, vitamin deficiences, or thyroid problems.

 

:emoticons-group-hug:


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Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#8 Amanda Thorpe

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Posted 09 February 2015 - 06:09 AM

Shelley, as unusual as it is for my posts to be opaque  :wacko:  :blink:  :lol:

 

As it happens I think that the symptoms are caused by neuropathy and pregabalin. Good eh? I don't know whether the flare of pins and needles and burning is because of the neuropathy increasing or the pregabalin side effects because, yes you guessed it, the side effects and neuropathy are the same. So I burn, prickle, pins and needles randomly with no way of knowing the cause. Really?


Amanda Thorpe
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