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 04-29-2009, 07:56 AM #11
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Default Hi,

I gave up caffine about 2 months ago. It doesn't do anything for my pains but I do feel better. I can sit still longer and not as jittery.

Last week I gave up flour products, and dairy products to try and get my stomach straightened up. I am not as constipated.

It's definately a choice. Bill wouldn't give up caffine even though he had high blood pressure and heart problems. I use to try and sneak in caffine but he was too smart for me.

I'm glad I was able to give it up. I do feel better about it.

My daughter gave it up due to high blood pressure a few months ago.

I do like the Salada green tea and it is decaf.

Ada
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Old 04-29-2009, 08:37 AM #12
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I'm like Dew, NEED my coffee in the morning and follow that with a few cokes during the day. W/ all the meds I'm on that make me tired, the caffein keeps me goin thru out the day.
Sarah
God Bless all , in pain, or out...
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Old 04-29-2009, 08:58 AM #13
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I wonder if coffee is just one of those things --again. If it's not stress or stress factors, or your personality, then it's something else. It's always going to be something else it seems. We get told so many things. Not enough is known about RSD, so pretty much anything goes. To me, it reeks of RSD not being taken seriously. I shriek in horror if I even get talked to like that.

Rita, he's right about not cutting down on coffee. If he feels even worse without it, then let him have his coffee. That's the way I feel about it. I can't just drink water all day, who can, I drink it more than enough with my medication!

I can get worked up about things like this, I really can. I mean do they preach to cancer or aids or MS patients like this?
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 04-29-2009, 09:13 AM #14
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Quote:
Originally Posted by CRPSbe View Post
I wonder if coffee is just one of those things --again. If it's not stress or stress factors, or your personality, then it's something else. It's always going to be something else it seems. We get told so many things. Not enough is known about RSD, so pretty much anything goes. To me, it reeks of RSD not being taken seriously. I shriek in horror if I even get talked to like that.

Rita, he's right about not cutting down on coffee. If he feels even worse without it, then let him have his coffee. That's the way I feel about it. I can't just drink water all day, who can, I drink it more than enough with my medication!

I can get worked up about things like this, I really can. I mean do they preach to cancer or aids or MS patients like this?
I doubt it, and you're right.. RSD is not taken seriously, all too often. I do let him have his coffee, especially since I'm a caffeine addict myself. The whole pot and kettle thing, ya know.
I think most of the time, docs are guessing as much as we are. Sometimes more. I pray for the day that more is known, and therefore understood about this disease.
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Old 04-29-2009, 10:19 AM #15
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i've dealt with my fair share of condescending doctors--like the one who told me "just don't walk when it hurts," thanks doc!--but in the case of the dietary changes i'm trying out, it was fellow RSDers who recommended the change. i'm tackling my RSD in a number of ways, and i thought this one was worth a try. worst possible side effect? i get a little healthier anyway.
thanks everyone for joining the conversation!
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Old 04-29-2009, 11:06 AM #16
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I saw a holistic doctor through my many regular ones who suggested this a long with many other dietary and supplement changes. I currently see a nutritionits but for seperate issues but am hoping it will help with this too. The thoughts I have around diet in whole is that it will take time to see any changes and I know for myself I get frustrated. I am trying though and also with the thought that it may help to prevent other problems as I feel my immune system since I have developed rsd with infections so on is bad. Year ago before I developed this I cut out caffeine and at first I felt horrid from my body being so used to it but after a month or so I felt more energetic,calmers,better sleep/digestion.
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Old 04-29-2009, 02:35 PM #17
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I've been a moderate to heavy coffee drinker since I was 17. I use it to pace my day and be most alert at the times I choose. I would periodically quit drinking coffee for three to eight days just to see if it was having any deliterious effects. It was always very easy to kick the habit and just involved a slight brief headache in the middle of the second day. I could never really identify any effects other than the diuretic effect and the way drinking coffee makes me very slow to awaken in the morning. Without coffee I'm at about full steam in five minutes but with it I'm on my second cup before the grogginess goes away.

On the advice of my doctor I quit it again when I got the RSD but again I could tell no real difference and took it up again. This might have been a big mistake because now I can't quit. I get panic attacks instead of a headache when I try.

I still use it to pace my day but I no longer have much option when I drink it as everything is habit now while trying to avoid triggers. Since I have to drink it at set times there's just no point in drinking it at all. ...And waking up in the morning takes 20 minutes.
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Old 04-30-2009, 02:04 PM #18
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I have cut out most caffeine and just have the occassional coffee. I used to always drink coffee but have no cut it down a lot and only drink it once every 2 days or so.

I can't say that I have really noticed a big difference in my pain from cutting out the caffeine. My pain seems to be the same as ever; no better and no worse.

I visited my grandad this week and he said that he thinks that I have some 'allergy' that is feeding into my pain cycle. I can't say that I can think of anything really although chocolate does make my pain worse sometimes but I have a friend who has RSD and has had to have lots of allergy tests because of it. The Doctors found out that she was allergic to garlic and all sorts of other things and believe that they could be making her pain worse, although they aren't sure. No doctor has actually tested me for allergies but it got me thinking since my grandad said that.

If you look on Dr Hooshmands website, he has a a diet specifically for RSD'ers. It gives you a list of things that you can eat and things that you should try and avoid. I'm not sure if you have seen it before but I thought that it was interesting and am going to try and follow it.

Take care.
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Old 05-01-2009, 09:26 AM #19
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I've always been weary of diets, esp. when you're sick, have a condition or disability. How much can food do on its own? A lot, especialy when you start cutting out food groups, I think that's the worst you can do and that it's detrimental to your health.

IMMHO all we can do is stay as healthy as possible, that means eating healthy food. Lean meat, red meat, fish, vegetables, potatoes, pasta, ... I think we need all the vitamins and minerals of as much varied foods as possible.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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