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 06-18-2013, 10:29 PM #11
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Wow, that is strange.where I am, if you get more than 2 or 3 prescriptions of pain meds, they are pawning you off on pain management. Originally my podiatrist thought I was a drug seeker until he saw the rsd results. Then he felt like a jerk. I think every state and country is different. I've heard some states are much tighter in their pain laws. I hope you get it sorted out. Did I read you would be getting an scs trial possibly? If so, that helped me immensely until I had a seizure. I understand the child care situation. Luckily, mine are getting old enough to be home alone. If I were close, I would keep your child! that's one thing I miss: teaching. If I get all this back under control, hopefully I can teach again. I have an M.Ed. Anyway, rsd is frustrating disease and I think everyone gets discouraged. I know I have been lately. It's definitely misunderstood. If I read correctly, I saw northwest, and I have read many times Washington is notoriously difficult on chronic pain patients. I wish you luck, and I wish I could help. If you need to talk or vent, I'll listen. Hope things get better. The pool is an excellent suggestion. I love warm pools. If they're cold, I wind up shaking like a leaf. I have no temp control. I look silly.

TK

Yes I did the SCS trial. It was weird and the doctor wasn't very.... friendly or helpful I guess is the word. lol But anyway it didn't work out. I also am not good with temp control. I will be freezing one minute then burning the next but my leg seems to always be hot and my foot freezing. THIS THING IS SO WEIRD!!! LOL
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Old 06-18-2013, 11:15 PM #12
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Northwest Pain Care is the doctor who told me I have no hope and there is nothing else I can do. He sent me on my way and pretty much told me not to come back. He said there is no reason for him to see me again. I would love to get a membership somewhere with a pool but I don't have the money, but in the summer I have access to a pool and I go swimming a lot. Or just walk in the water etc.. I have Lidoderm patches but I can't figure out where to put them since it is my entire left leg that is in pain. I have tried on my ankle where the pain is worse but it doesn't really help and taking them off is unbearable. I can always use a friend!
That is just horrible! Are you willing to come over the pass to either Issaquah or Seattle for care? Is there a YMCA that might offer a discount?

Lidoderm - I would place at least 2 on the most painful area for up to 12 hours. It helps to google a map of the nerve path so that the lidocain gets absorbed more easily. A good place to start would be by placing one right over the top of your groin crease, a little off center toward the outer thigh. Another would be on the top of your foot. If you can try using Voltaren gel 3x during the first 12 hours of the day and then wear the patches for the other half (taking them off in the shower or tub) that might do start to help you. The combo worked best. Nothing takes it all away.. as I am sure you know but enough to take the pain grimace away and even giggle a little.

Your new friend from across the pass,
Tessa
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Old 06-18-2013, 11:37 PM #13
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Yep same here. I have huge issues with temp control. In fact, I'm sleeping with an electric blanket. It's about 80 in our house. I'm sorry your trial didn't work. I would be in way more trouble without my scs's. They help me so much. Without them, I would be really messed up. Hope things get better!!

TK

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Old 06-19-2013, 10:39 AM #14
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That is just horrible! Are you willing to come over the pass to either Issaquah or Seattle for care? Is there a YMCA that might offer a discount?

Lidoderm - I would place at least 2 on the most painful area for up to 12 hours. It helps to google a map of the nerve path so that the lidocain gets absorbed more easily. A good place to start would be by placing one right over the top of your groin crease, a little off center toward the outer thigh. Another would be on the top of your foot. If you can try using Voltaren gel 3x during the first 12 hours of the day and then wear the patches for the other half (taking them off in the shower or tub) that might do start to help you. The combo worked best. Nothing takes it all away.. as I am sure you know but enough to take the pain grimace away and even giggle a little.

Your new friend from across the pass,
Tessa
Thank you so much! I will try that.
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Old 06-20-2013, 02:25 AM #15
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I was seeing a counselor but now my daughter is out of school and since I am a single mom I have no one to watch her. I don't know how I can go to a counselor when I have my daughter full time. I tried going to the only pain management in town and in the nearest big town and they both told me I had no other options and they wanted the podiatrist to handle my pain meds. Which I think is really weird by the way. What kind of pain management doctor won't help me with pain meds? I just feel like I am being abandoned.

There are some counselors in my area who do home visits. I used one when I had post partum depression after my second child because I couldn't deal with a 1.5 yo toddler and a newborn together at a therapist's office.

I usually see my current counselor at her office, but she let's me do a phone call consult if I can't drive/get a ride some days.

I know that you are in a small town, so options might be limited, but you never know unless you ask.
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 06-20-2013, 02:30 AM #16
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If you can travel to Spokane Valley, there is a very good physiatrist who is well versed in CRPS. His name is Dr. Melre Janes. His office is right behind Valley hospital. Might give it a try
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