Thread: RSD Spread
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Old 01-24-2014, 12:48 PM
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zookester zookester is offline
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zookester zookester is offline
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Join Date: Jun 2013
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Hello Renee,

I am sorry you are having such a tough time!! Don't worry many of has probably had melt downs at one time or another, that is normal under the circumstances.

Try not to stress to much about your upcoming tests just because they are 'looking' doesn't mean there will be anything to find..yes optimism is in my blood little story along those lines.. my father-in-law had been having issues for months with his GI/Colon and he isn't the type of person to ever mention a thing unless it is bad. So, after his first doctor appointment they told him he had a hernia and that his gallbladder needed to be removed. He was actually ecstatic because his guts were full of cancer.. then they did some blood work and other testing and warned him they were highly suspicious of pancreatic cancer. We were all worried sick especially because his Dad died from that. So while awaiting for the CT scan that was a week away, he and his wife were literally worried sick. To make a long story short after his CT scan the next doctor said he didn't have a hernia (I still find it odd how that could be misdiagnosed) and his gallbladder was fine, and most importantly NO cancer!! All of his pain was from diverticulitis for which he had been dealing with for years, it caused an infection that caused the worsening of symptoms and larger area of pain. All that worry and stress for nothing. The take away from that story is... worry will only add to your pain and harm your mind.. try to tuck your worry away, what will be will be.. but until then you don't have to fight against a ghost. I hope that made sense. This is of course easier said than done, please try for your own sanity.

Ya' know I was thinking.. with CRPS GI/Pelvic/Adominal issues are known issues. As I understand it our stomach can slow down the process by which it digests food (very simple description) which can cause many problems including abdominal pain and nausea. Medications only add to this slowing. I don't know if they are testing you for that along with your other tests but, it might be worth bringing up to your doctor.

In another post you mentioned Fentynal (sp?) patches. I can't comment on that one but I can comment on the Butrans patch - this has helped me greatly in terms of less stomach problems from pills and it does help with some of my pain symptoms. I have also noticed less irritation/agitation that was clearly caused by pain.. my husband is thankful for that Giving your stomach a rest may help you between now and your testing in March, possibly.

Sometimes it is harder to tackle all the pain and effects of pain as a whole. I have found that it is easier to work with my doctors to tackle things more individually. For instances sleep deprivation is a huge problem because it reduces your ability to cope with pain that you could otherwise cope with better, it adds to depression and agitation with yourself and others, it makes our brain fog and ability to concentrate even more difficult etc., So addressing sleep would seem a good place to start since that alone would trickle down and help some of the other issues. My doctor gave me a "counter" that I was to touch every time I awoke due to pain or other reasons during my sleep. I was amazed as was my husband that in 6 hrs of sleep I was waking between 16-24 times. This confirmed many of my issues were being exponentially increased due to lack of sleep. So we looked at my meds and one thing I was doing was taking the amytriptilyne at bedtime instead of several hours before. By taking it so late it didn't have a chance to start working until half of my sleep time was already over. I've only switched dosing times for 2 days and already I've noticed a difference.

As far as I know there isn't any medication or treatment that will eliminate or reduce all of our symptoms at once. Maybe if you can isolate the ones that cause you the most grief and focus on how those can be relieved (even if only a little bit) it might give you a little more hope and cause less stress while trying.

Regarding osteopenia/osteoporosis and arthritis - other than advil there are other things you could try that might not affect your stomach as much. Pool therapy would be one thing. Celebrex is also one that helps with the deep bone pain of CRPS as well as arthritic pain and there are others. Weight bearing is the best for all 3 issues plus Vitamin D3 and calcium. Have you tried taking joint supplements? Just thinking out loud here.

One day, one hour or even just 15 minutes at a time..
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RSD ME (01-24-2014)