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!!!

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.

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!!

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

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!!

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

So sorry to hear that your RSD has spread. I remember when my RSD spread, I was extremely depressed and it took months for me to be able to even try and do the Physical Therapy that I needed to!!!

I second all of the good advice already given. An old member of the forum, Vicc (who has sadly passed away now), suggested taking Grape Seed Extract to see if that helped any. My mum ordered some capsules off the internet and it didn't really help for me with the pain but it did help a little with the swelling. It might be an idea for you to talk to your Pain Management Doctor about it and see what he/she says however, it doesn't have that many side effects.

It's a good idea also to take Vitamin C. I was told to take it by my Physical Therapist's as they thought that my bones were becoming weaker and weaker and that I was at risk of developing Osteoperosis. I take Vitamin C a lot now ... i'm not sure if it's helping, guess i'll find out if my doctor ever decides to do a bone scan but it does seem to stop my teeth from chipping as easily. Before I started taking the Vitamin C, my teeth would break all the time and I have had to have some pretty nasty dental work done because of it (teeth taken out, need a root canal, fillings etc).

Also, please make sure you keep moving the affected legs!! That is sooo important! I tried my very best to move my leg but I developed Dystonia so no matter how much I tried to move my leg and arm, it just wouldn't move!

Take care and hang in there - you are in my thoughts and if you ever need anyone to talk to, please let me know as I know how scary it is dealing with a spread of the RSD.

Hi honey!!! I'm either in denial or acceptance of my spread!!! Because I'm not having any pain or other symptoms yet (other than the OBVIOUS color changes.....one toe stays bright red all the time, the others get blue when I stand up)......I'm not too upset about it. I kind of expected it. I'm going to show him Monday before my next injection and hopefully he'll give me a shot for that side, too.

I actually am moving MUCH better since my last injection. I managed to work cleaning up for 3 hours this morning on my feet with no major swelling!! The "cold" sensation is back along with the tingling and some jabbing pains, but I can live with that if it just won't swell so darn much.

Hubby went out last night and got me the Grape Seed extract and a bunch of different types of balls and hand exercisers and weights to keep my hands and feet in shape. I'm going to stay ahead of this and start working them NOW......before any other symptoms show up. Also, I've been going up the stairs on tiptoes......trying to strengthen my toes (which still don't want to work well on the left foot). I moved it around in a nice Epsom Salt bath earlier......so I'm doing really well!!!

We didn't get the snow I was so hoping for (it's staying just north of us), but my kids are here this weekend so I'm ALWAYS happier then!!! Thanks for writing!!! Take care!!!