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Breakthrough Pain in Scleroderma


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#1 annkd

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Posted 25 April 2011 - 05:44 PM

I am wondering if anyone here has experienced "breakthrough pain" associated with scleroderma. . I have heard this from my rheumatologist from time to time and I keep wondering if that means that the medications are not working so well and that the pain is not being managed or is it something else? Any thoughts? Thanks. Ann

#2 Shelley Ensz

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Posted 25 April 2011 - 06:00 PM

Hi Ann,

That's an excellent question about pain. As it happens, it's one you need to discuss with your medical team because there can be different expectations depending on what pain is being treated and what medications are being used.

For example, I recently had rotator cuff surgery. With pain control afterward, the goal was to bring my pain level down to a "4" on a scale of 1 to 10. Basically that's enough to make exercising the arm endurable but still not the happiest thing, so stretches, OTC meds, and cold packs fill the rest of the gap.

Personally, I think a gap between our pain and the medication is a very good thing. It means we aren't medicated into a numbing stupor and can still receive signals telling us something is wrong ("Drop that heavy thing!", "The water is too hot!!", "You just ran your shopping cart over your own foot, silly goose!", etc.) So to me, "breakthrough" pain is a good thing -- provided it still leaves me functional, that is, and doesn't get too high up the pain ladder.

However, everyone is different and certainly all our doctors will probably weigh in differently. So the most important thing is your own comfort level with absorbing pain and your doctor's instructions as to what level of pain is still acceptable, given your particular circumstances.
Warm Hugs,

Shelley Ensz
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#3 Jeannie McClelland

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Posted 25 April 2011 - 09:04 PM

Hi Ann,

Breakthrough pain is a term that originated with the treatment of pain related to cancer. It is commonly defined as transient flares of severe or excruciating pain in patients who are on stable doses of opiods that adequately manage the 'baseline' pain. (For more, see this article in the PubMed collection.) Because opiod drugs are long-acting, breakthrough pain is usually treated with a short-acting pain medication. It is my understanding that in the treatment of cancer pain, increasing episodes of breakthrough pain usually signal a need to increase the dosage of the opiod being given or switching to a more potent one.

There seems to be a growing controversy in how non-cancer related chronic pain should be treated. There is concern that clinicians are over-prescribing opiod drugs, resulting in abuse and in adverse drug events (such as accidental overdose). Most of the literature regarding breakthrough pain has been written in the setting of cancer pain and there are now questions being raised as to the validity of many studies when applied to non-cancer related pain.

I'm on the fence in this matter. I absolutely agree with Shelley about the need to discuss your pain management with your doctor(s), so that there is a clear understanding of what is a reasonable expectation in controlling/alleviating your pain and how significantly the baseline level of your pain affects the quality of your life. I am worried, however, that for millions of us with a high level of chronic pain the changing attitudes may well mean we will not have access to adequate pain management. (That's my rant for the day. :) )

I suppose the real question is which medication are you concerned about - a pain medication or the medications you are on to treat the scleroderma? I'm guessing you posted this question because you are experiencing more than usual pain and I am really sorry about that. It's miserable to hurt. Would a hug help? :emoticon-hug:

Warmest wishes,
Jeannie McClelland
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#4 annkd

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Posted 26 April 2011 - 08:05 AM

Thanks Shelley and Jeannie - Yes, I am experiencing more pain than usual. And YES Jeannie I could use that hug! My rheumatologist suggested I look into pain management. I need to look at ways of doing things differently. I have been to one before when I lived in Los Angeles. I think it would be a good idea. Some things have changed, like when I get up from a sitting position. The pain is my legs in just crazy - like sharp shooting pain running down to my toes. My finger joints are so sensitive. The finger I had surgery on ( giant cell tumor of the bone) is pretty much numb, barely any sensation left. My regular pain meds are not cutting it. So, anyway, things need to change and hopefully I will find a better way to deal with it. I read the article from Pubmed as you suggested Jeannie. Very interesting. Thank you.
Hugs to all - Ann

#5 Amanda Thorpe

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Posted 26 April 2011 - 03:57 PM

Hello Ann

What a well timed question! I have just been put on a pain patch with an oral suspension for break through pain. I had no idea what break through pain was and never thought to ask, I just assumed that it was when the pain became severe enough to need more medication because pain can wax and wane.

Can your rheumatologist refer you to a pain management clinic rather than you having to find things out yourself? I suspect that I will soon be on my way to such a clinic.

Take care and keep posting.
Amanda Thorpe
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#6 annkd

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Posted 26 April 2011 - 09:43 PM

Hi Amanda - Yes, my rheumatologist will be able to refer me to a pain management specialist. It is interesting to note that from the variety of meds from pain patches to other pain meds, my body does not seem to tolerate most of them. It has been an 8 year quest. I am so sensitive to meds. The moderate pain medication works in minor ways but that is it so far. I will keep you posted and thanks for the support. - Ann