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Old 04-25-2013, 04:07 AM
cailinruaidh cailinruaidh is offline
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Join Date: Mar 2012
Location: Ireland
Posts: 13
10 yr Member
cailinruaidh cailinruaidh is offline
Junior Member
 
Join Date: Mar 2012
Location: Ireland
Posts: 13
10 yr Member
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Quote:
Originally Posted by PepperCross View Post
Thanks so much for the words of encouragement . I like to keep pretty upbeat even though sometimes it seems futile, but like my dad says "If I weren't laughing I'd be crying." So yeah, I keep going and try not to complain too much since it won't get me anywhere or give me any satisfaction.

I did find out Vanderbilt hospital does have a ketamine infusion program! Yay! Now all I have to do is get my doc to set me up for it....well, that doesn't sound very simple does it? But I think he might since I feel it has spread to my left hip in the last week. Surprise! I also found out my doc doesn't prescribe pain meds which really is ironic! Pain doc doesn't prescribe pain meds....

If this guy doesn't have plans for me my next visit, which is still about 2 weeks from now, then he gets the curb and I find someone else. I have learned from working in doctors offices one has to take control of one's health care and make sure the doctors are doing what they can and should or go find one who will.

How are you doing? I hope you are doing all right tonight, or whatever time it is where you are
HI again, sorry I didn't get back to you yesterday. First of all, start taking Vit C , at least 500 mg/day. It is thought to improve outcome of injuries and it helps get swelling down. It's not definitive yet but there are several small studies on it.
Also eat berries: blueberries, raspberries, blackcurrant, as they are also anti-oxidants. You can also put them in smoothies.
Add anti-inflammatories olive oil or flax oil to your diet as a salad dressing or off the spoon. Heating these oils destroys the anti-inflammatory. Take Omega 3 fish oil capsules daily; the best ones are high in EPA and low or no DHA. Fish oil is a great is great anti-inflammatory.
Immunocal or bio-active whey protein, as explained by Mark Hyman in the
HuffPost, contain Glutathione, the major anti-oxidant which the body makes to get all the other anti-oxidants moving. Glutathione is low in those people who fail to recover from illness. Dr Oz does segments on glutathione on You Tube.
All this might seem like a lot of work but inflammation plays a huge role in early CRPS and and maybe even a continuing role. This was what your podiatrist was trying to alleviate with the cortisone. However putting a needle into a CRPS limb just added further injury and was way too late. It might have helped when the foot was swollen first but before the CRPS started.
You're already getting the message about CRPS: you have to be your own advocate. You have to learn enuff about it to do that. Read about it here on the forum, on the RSDSA website and there is some great information on the Florida RSD foundation site, particularly about the various uses of ketamine and things to be aware of when working with a physical therapist. Never let anyone use ice on it and never let a therapist stretch a limb out. You must do the stretching yourself, preferably in a pool. Because of the danger of re-injury, pool exercise is the gold standard.

I hear you when you say you're off painkillers. Are you at least still taking the clonidine, gabentin etc? They may help prevent the CRPS spreading. The clonidine and lidocaine can be delivered by patch, and the lidocaine won't take the pain away but it may take the edge off the pain. The ketamine cream is useful in that it can be applied directly to the pain, there's no worry about pulling an adhesive off the worst part. You may be able to wesr the lidocaine patch higher up the leg. I used the ketamine cream and would put it in a circle around my leg just above the injury as well as on the injury.
I don't know if it was imagination, but I thought that helped.

Do all the exercise you can while you wait for your ketamine treatment. If you can't walk, then swim, bicycle or leg cycle in the air.
Warm the limb in water, smooth cream onto the limb if you can, just above the injury if you can't. Always Massage towards the heart to help swelling and edema.
Try to get into the habit of touching the limb yourself several times per day, I know you don't trust anyone else to do it.
Look for You Tube videos on Graded Desensitization and Desensitization Exercises. You have to keep the circulation moving in the limb to prevent further damage and this also helps swelling.
See Pepper, my letter is as along as yours! There will always be someone on here to talk to. We all started where you are and we all remember the fear and the isolation. You can also send private messages here.
Hope you get the ketamine soon, but in the meantime there are things you can do to help yourself and regain your power. Lots of Hugs. Paula
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