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Old 04-16-2011, 11:05 PM
Dubious Dubious is offline
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Join Date: Jan 2009
Location: Paradise
Posts: 855
15 yr Member
Dubious Dubious is offline
Member
 
Join Date: Jan 2009
Location: Paradise
Posts: 855
15 yr Member
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Quote:
Originally Posted by 6kiddos View Post
I had my first sympathetic nerve block yesterday. It worked for 5-5 1/2 hrs. I have not been "diagnosed" yet...but since the block worked does that mean I have CRPS?

I have a few more questions..

1. My feet are affected and I am not sure what to wear for shoes. This started with plantar fasciitis so I need something with support but cannot handle too much on top of my feet most days. So..tennis shoes are usually out and most sandals I am seeing just don't have support and are not soft enough. Suggestions? I live in the desert so sandals are a must anyway. =)

2. I have a numb spot on my left leg after the block yesterday. This morning it has started to have an electrical type pain on the edges of the numb area. Is this normal? It hurts to move my leg or walk. I called the triage line and they told me to ice/heat on it and take tylenol. I will not do ice since I have read that is bad for CRPS and even if it is not an affected area...I don't want to risk it. Would you do ice?

3. How do you all handle telling your kids about this. I have 6 kids (hence 6kiddos)...ages 16, 14, 11, 9, 6, 4. The younger ones only know that mom's feet hurt. I don't want my kids to worry, but I need them to understand that I cannot do everything I have done in the past. sigh. I feel bad that I cannot handle going on field trips, etc I used to do this all the time and volunteer at the school on a very regular basis. =(

4. Has lyrica worked for others? I am on 50mg morning and night. I have not noticed a difference. I have tried neurotin also but I was a BAD space case on it.

5. I am having trouble placing my pain on the pain scale. I have a pretty good pain tolerance. As this has progressed and gotten worse I had trouble with my dr's listening to me...I think they didn't understand that if I was complaining about bad pain...it was BAD. It took 4 podiatrists to finally find one who took me seriously. I am SO glad I found him! Even the pain management dr. didn't take me seriously at first...took the 4th podiatrist to get his attention. SO my question is, because I can function that would put it at 5-6...but I wake from the pain which is really a 7-8. What do I tell them?

6. Paying for all of this...how do you do it all? Right now we are finishing up some medical bills from last year (we had a 10k deductible last year...dd has sinus surgery, I treated TMJ, etc and we spend $16k on medical! ouch) Anyway, we have already spent about $4k this year and now I am on the 80/20 part. (new insurance through new job thank goodness!) I am having to take it out of my food budget...which isn't that big to begin with. Dh makes too much money for state help. He is going to sell his car (which will be paid off in 3 months) and get one with better gas mileage, etc. and we can take the left over $$ for saving and medical...but then what?

7. How do you sleep through the night? I am having trouble with waking every morning at 3-4 am. I don't know what to do...and I am getting WAY too tired.

Thanks for your time. I am trying to stay positive through all of this. I am scared but I am trying not to let my kids see that. I just keep hoping we caught this early enough. I THINK my symptoms started in mid-december. That would be 4 months ago. I hope it will go into remission at least until I can get my kids out of the house or mostly but my youngest is only 4. =( I also am hoping it won't spread to my hands...I don't know how I would handle having trouble playing the piano and sewing. (as it is I will probably sell my sewing machine and get one with a push button stop and start since the pedal is just too much.)

J
Hi,

Yes, if the blocks help, it means you probably have sympathetically mediated pain. It is good that something helps!

1. I wear good quality shoes (Brooks Beast) 95% of the time. My feet feel good.

2. I have had 13 stellate blocks since diagnosis. They have all helped incrementally. I have also had strange symptoms transiently. As for ice...I had ice every PT visit for 1 1/2 yrs which never seemed to have negative effects, despite the literature. Each to his own, I guess.

3. I only have one...an 11 year old. She was 8 when we got rear-ended that started all of this. All she knows is that daddy is broken after the 20 y.o. blonde bimbo (should be carefull, my wife and daughter are blonde) on her cell phone rear-ended us.

4. Neurontin caused nuclear bombs in my stomach....Lyrica really helped a lot but caused my heart to skip beats so neuro took me off it.

5. Tell them the truth. It hurts like poop! Multiple sympathetic blocks are the only thing that helped me in the long run. ES vicodine (12 per day), oxycontin and all the BS meds since only cut maybe 5-10% of the pain.

6. We had good insurance. Not sure about that anymore...I am stuck with MC now...

7. I take lorazepain .5 mg at bedtime...gives me 3-4 hours of sleep. Touch and go and night to night from there. I go to bed around 9-10 pm...wake up at 2 am and toss and turn till 4 or 5 am and then hit the coffee all day long from there! Chronic fatigue seems to be the name of the game...

I cheated and self-diagnosed at 5 weeks post surgery (that caused CRPS) so in effect, I was "caught" early too. I am worse than some...not as bad as others. You will bob and weave your way through your symptoms and treatment issues like we all have. But you are among friends now!
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