Hi,
It sounds like you are just so blessed with your six children but so overwhelmed as well. My three children are grown, gone, and have had children of their own. However, I'm watching my 3 and 5 yr old grandchildren full time so now my memory of the energy it took to raise those children is fresh...and I didn't have RSD then. My thoughts go out to you.
(1) You are lucky you live in the desert. I'm in MN and its a devil. My RSD started in both my feet so I'm familiar with the shoe issue. I have so many pairs I can't wear. The best shoes I've purchased are from the podiatrist. They are expensive ($150) but if you add up all the $$ from pairs you can't wear it may seem cheap. They are not cute, but work.
(2) No way would I do ice. It will make it worse. Trust me. I have numbness on the outside of my right knee. When I touch it the electric shocks shoot through me. Try the tylenol if needed.
(3) Well, due to the difference in the ages of your children, I think a variation on the story is needed. As you probably know already. Work with the sore feet story for all and with the older children let them know you are trying to get this monster back in the closet and will need their help.
(4) I take Lyrica--600 mg/day. Talk about a space cadet! My stomach reflux has gotten so bad that I've lowered the dose to 250/day. When the pain is bad, I take tylenol and tramadol. When I find is the worse right now (
almost 6 years) is the aching in my muscles and bones. Do you have any ideas for that?
(5) I agree with the pain scale issue. I also have a high pain tolerance. Just go with your gut.
(6) Paying for this is different with every insurance. While I was still on my employer's insurance I had signed up for the golden plan. $700/month but paid for everything, prescriptions $4.50. Now I'm on Medicare and shell out $6000 for meds each year. I'd love to try the ketamine infusions but I don't think I can afford them.
(7) As for sleep. Well, that is another story. I can't seem to sleep more than 3 hours at a time, even with sleep meds, Lyrica, Cymbalta, Celebrex, etc. I think the constant nerve flashes make me feel like I'm running a marathon.
Since you were diagnosed early you have a good chance of going into remission. I'll pray for you tonight that it happens. In the mean time, just deal with one problem at a time. Try not to look ahead.
Teresa Marie
Quote:
Originally Posted by 6kiddos
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
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