Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-23-2013, 12:51 PM #41
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can you just wake up one day and be gluten intolerable? I am not sure how that works.

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Originally Posted by NJPineyChick View Post
Hope you feel better. I had something similar. It took 3 years but just dxed with celiac. No more tummy pain or rib pain as long as I am super careful with gluten.
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Old 12-23-2013, 12:53 PM #42
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Yes any medication in this catergory needs 2 hours before and after. i.e. nexium, zantac, etc. so in all I figure if I took the medications as I am told I would be awake 22 hours a day taking medications.
Can't imagine.

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I read somewhere to take your antacid meds 2 hours after neurotin. Not sure where I found this but any pharmacist should be able to tell you for sure
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Old 12-29-2013, 11:23 PM #43
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Originally Posted by alt1268 View Post
can you just wake up one day and be gluten intolerable? I am not sure how that works.
Hey alt. I think you can develop the intolerance at any time. I am sure there are some precipitating events that lead to it. I had issues for quite some time before we realized it was gluten. I was tested for celiac many times and every time it came back negative. Dr and I decided I should try going gluten free and I noticed a huge difference...that was several years ago and I am still gluten free.
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Old 12-30-2013, 03:10 AM #44
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Since getting this "oh so wonderful disorder" I've gotten gastroenteritis, and have bad bouts of diarrhea, nausea, and vomiting. I don't know why it's effecting my stomach/digestive tracked when the disorder is in my legs, but it does. This is even when I'm not on any treatment I get the stomach thing going. Just out of the blue, and eating like normal I will have to run to the restroom and vomit, and have diarrhea. It got so bad I have a specific trash can in there for it. Isn't it just wonderful what this disorder does to us?
Ditto... legs and all, although no diagnosis yet. It's on "the list" to follow up on.
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Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

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Old 12-30-2013, 03:41 AM #45
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It's a full time job trying to figure out what works, only to sometimes find what works... then ... with no warning... "it" doesn't work anymore. However I am glad for those of you who are finding what it is, and what works to help it.
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Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 12-30-2013, 08:53 AM #46
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I'm a coeliac - spent two years trying to persuade my doc something was wrong, and he absolutely denied it was coeliac... At one point I got him to agree to test me, but the tests came back negative because I had gone off gluten for a while myself just for sanity and because I felt so much better, and he wouldn't listen to me when I said I had to be back on gluten for a while before they could reliably test. I was only back on it for a week or so when he tested, he said if it was really coeliac there would be enough inflammatory markers to detect it. Well that's rubbish. You have to be eating gluten everyday for 6 weeks before they can test properly. When the problems kept going he eventually sent me to a gastro doc who said it sounded like coeliac, put me back on a full diet for 6 weeks, tested me, and hey presto. Then had the biopsy done (barrel of laughs) which was very positive, and I've been off gluten ever since. Huge difference to my life. My doc didn't even apologise when I next saw him either!!!

Gluten is a funny thing for a human diet, the sort of grains early humans ate were very basic things similar to spelt now, which have a very simple gluten structure, easier for our system to break down. Modern grains like wheat are much more complex, and quite a big percentage of the population actually struggle to digest them, but with all the other modern garbage we eat, and complex sugars and fats as well, sorting out what causes some issues is a nightmare. Plus, some people's digestive systems can cope much better than others, and have few if any symptoms, even if they actually have a gluten intolerance.

From what I've learnt, I gather that if you are a coeliac you have been so all your life, which is why they check your bone density to make sure they have developed properly. If you're a coeliac, your system will have always been struggling, but copes ok for a certain time and then suddenly just can't deal with any more. That's why it's common to be diagnosed around age 40. It means your system will have struggled to absorb nutrients, and may have affected your growth, teeth, birth weight of children etc. Both my children were small at birth, probably because I just wasn't passing through enough nutrients to them through my blood. Some folk really can't cope, and are diagnosed in childhood, others are never diagnosed, having only had mild symptoms even in old age. Others are diagnosed with something else which presents in a similar way, and may never realise they have it.

If someone has any gastric issues, I would personally suggest going on to a basic healthy diet for 2 weeks (ie no processed foods, wheat, complex sugars, dairy etc) and then reintroducing foods one at a time (every 3 days) to see if a food is causing the problem. Obviously you'd have to be careful to get a balanced diet and eat enough calories, but it's not as bad as you might think - I remember when going properly GF, and having to check every single foodstuff for gluten, I thought I'd never have nice things to eat again!! I was so scared for a while, and ate just meat and veg, fruit, beans and rice, with olive oil and nuts. I still have some issues with dairy at times, and can't drink raw milk at all, althogh yoghurt and cheese are ok lol. It's all very complicated!

You should always check with your doctor before changing anything drastically, but in my personal experience doctors can miss a lot of things, or just be plain wrong, and often it is up to us to keep digging until we work out what is wrong. Putting my blind faith in what doctors say or suggest hasn't served me particularly well at times, and I prefer to learn as much as I can myself and apply it to what they are suggesting before I do it now.

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Patella femoral arthritis both knees.

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Old 12-31-2013, 02:17 AM #47
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Thank you Lit Love! Oh yes, a change in diet definitely makes a difference and yes, I am guilty of not eating the way I should. However, this is going to force me to make new choices in what I put in my mouth. After I was Dx with rsd I gave up on dieting and if I wanted a cookie…. I had a cookie, or whatever else. Any reasonable person KNOWS this is not good for you. I think the depression was severe and I was feeding more than my appetite. So guess what my New Years resolution is?? You guessed it! Yes, get my diet in order and start to try and eat more healthy. I think my body is screaming for me to do just that.
Hello I know exactly what you are going thru,I have full body rsd going on 6 years,had very bad stomache issues the first three years,major pain cramps bloating,eating made it worse and feel sick.had gull bladder removed ,stones removed ,nothing worked.nexium u name it.but my syke dr saved me by trying Remeron.this drug will change your life if you have stomache issues from rsd.its like an anti deep present but it has something in it that works great for gastro.ive been on it for 3 years and it's a life saver.it also gives u an appetite after taking it and u don't feel horrible afterwards.it also will make you sleep so take it at nite.I hope you get this medicine rite away so you don't have to feel like that anymore.we have so many other problems to deal with.please don't wAit ,call dr today.that hoes for everyone with this issue.you will thank me later.btw this medicine works rite away soft huggs
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