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 01-09-2009, 01:25 PM #1
MominPainRSD MominPainRSD is offline
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Default RSD spread

Well, team.....I really hate having to give everyone bad news......but I am pretty sure my RSD has spread to my right foot. I just got back from the Wound Care doc (he said the incision isn't infected, so he's going to leave it alone.....which I appreciate).....and he saw that my right foot is just as red/blue/purple as the left one. Other than the big toe pain (which, ironically, is gone now......completely gone.....it was so tender this morning I could hardly touch it)......and the color changes, I'm not having any other symptoms in the right foot (no allodynia, sensitivity, tingling, etc.....)......so far, it is just the color changes. I have a call in to my Pain Doc to see if he can shoot up the right leg on Monday, too.

I am disappointed, but at least I'll match!! Honestly, I have been noticing for a few weeks now (even before my injections) the right foot slowly turning more red.....so I don't think the injections have made it spread. I have lost a lot of the pain relief I felt from the second injection already (48 hours).....it is starting to feel cold again and tingles......but the allodynia is still better, so I feel encouraged about that. I was able to wear a shoe, I can still pull on my sock, and can gently rub it with lotion. If that is all the improvement I will get out of these injections, it is still worth it.

Funny, I feel badly telling you all of this. Everyone has been so sweet and excited and supportive of me!! I wanted to get better to encourage all of YOU as much as for myself. Well, we are a team......we'll hang together and do what we have to do.

It's FRIDAY!!!! I hope to get lots of rest over the weekend before my next series of injections (which make me SO sick). PLUS......it's supposed to SNOW here tomorrow!!! I will plug in my "snow light" to watch from my bed and drive around with my "snow roof" open to savor every moment of it!!!

I hope everyone is having a good, pain-managed day!!!
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Old 01-09-2009, 07:12 PM #2
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Default

It's been suggested here that grape seed extract helps prevent spread. I'm not certain if it does or not but it does seem as though it might. I take some other things which I'm more sure help me. Ghinko biloba helps significantly and vitamin C also seems to help (and ward off colds). Some pharmacists have suggested that all the antioxidants might help and I'll try adding some more to see.

Probably the best thing to remember is to fight the disease and not the foot. But who knows?

Good luck.
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Old 01-09-2009, 07:17 PM #3
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Thanks for the suggestion. I take Vitamin C twice a day anyway (plus B-complex, magnesium, calcium w/Vit D, zinc, and a few others). I can't take Ginko Biloba.....it makes me feel crazy (more than usual!!). I will try the grape seed extract, however! I appreciate your response!!
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Old 01-09-2009, 08:16 PM #4
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Default ello..

Hi there I am Sandra.. nice to meet'cha..

I second the good advice already given, a recent study builds on previous evidence that vitamin C may reduce the risk of CRPS after fracture. In the study, 416 mostly elderly women with fractured wrists were randomly given either a placebo or up to 1,500 mg of vitamin C daily for 50 days. Those patients who received vitamin C were significantly less likely to develop symptoms of CRPS compared to the placebo group.

So it stands to reason that Vitimin C and antioxidents for that is what vitimin C is, would help slow the spread of CRPS.. I know for a fact that high doses of antioxidents such as grapeseed extract cut down on the sunburn effect of the spread of RSD. I learned this lesson too late for myself.. but I up my antioxidents whenever I get a flareup and it helps tone things down.

Goodluck, I also drink ALOT of Acai and white tea's, both high in antioxidents as well, I have full body RSD but it is less severe than it was before I started this antioxident protocal.

hugs,
Sandra
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Old 01-09-2009, 08:30 PM #5
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Hi Sandra!! It is so nice to meet you as well. I will, indeed, add more Vitamin C to my daily meds (I spread it out twice a day currently......I think 150mg in the morning with my B-Complex, and 500mg in the evening. I will double that and add 500 midday as well). My husband has gone out now to get the grapeseed extract and some various exercise balls and light weights to use to keep my hands and feet in shape and limber. I am preparing for it full body, and trying to stay ahead of it. I have a 5 year old daughter.....she needs her Mommy to be there for her for a long time. I will do whatever I need to do to stay healthy and limber. I appreciate you writing me! I am disappointed and encouraged at the same time. I WILL fight this disease. It may drag me down eventually but I will go down kicking and screaming the whole way. My 4 kids are my first priority.....they need their Mom......my husband needs his wife......they are my life and I will not go down easily!! Thanks again for writing. I'm so glad you've shown improvement in the past few years. That is encouraging to ALL of us!!! Please keep in touch!!
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Old 01-10-2009, 01:01 AM #6
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Default Hi!

For me RSD is a daily maintence program. Diet rich in antioxidants, grapeseed extract, suppliments, yoga, meditation , prayer, light physical activity and HBOT. I am constantly managing the pain levels with this protocol. I think that we all eventually learn what to do as indivduals, to keep some control over this disease. For me it seems a full time job. Eventually you may find you develope a routine based around the challenges you face with RSD and what works for you. Choices from what you drink, eat, how you handle stress ,and how much activity you can tolerate, all become deliberate. Your attitude will pull you through! Hang in there. Diana
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