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 welcome to the boards though I am sorry about your pain. Everyone responds different to meds so for one it may work and another it may not. From what I have noticed and experience myself it usually takes a combo of different types. As for sleep I have horrible sleep issues and have tried multiple meds etc. I would talk to your doctor about meds to aid in sleep. There are some even that help with nerve pain but also with sleep. As for the block I would talk to the doctor who did it. Blocks don't always give an accurate dx of rsd I have heard. Ice is a big no for rsd.I don't even put it on any area of mine rsd or not. That is just my opinion though.
Have you had tests to rule out other conditions then rsd? The person who did the block is he knowledgable about rsd? I think it is very key.
As for shoes that again everyone is different. For me I only wear Nike walking shoes and that is every minute I am on my feet. So for ex if I go to the bathroom in the middle of the night I have to put shoes on. For some they can't tolerate shoes. Some I do feel is what you get used to. For a long time I could not tolerate socks for ex from the pain but I gradually began to wear them again but I have only a certain type
As for your kids well can you do family therapy? I am not a mom but possibly telling them enough of what you are going through so they can understand you can't do certain things but not so much it sends them in to fear. I think that yes life changes but if you can also find things you can do with them it may help. So if you can't go on an outing may be play a board game at home. Do you have family/friends or a husband to help you? 6 kids being healthy sounds hard but with this really sounds hard. I think reaching out for support and help is very key. Also therapy for yourself. I waited too long with this condition to go back to the psych etc.
Hang in there and hold to hope things can get better. It just takes finding the right treatment for you. If you want an email buddy I am here too.

Well, I am so sorry we had to meet this way, but Hello 6kiddos. I don't do shoes unless it is illegal. I hate socks. I wear dearfoam slippers at home when going without hurts more than wearing them. I have two pair of shoes I wear. They are Naturalizers and my husband bought them for me at Kohls. Before my accident I wore size 5 1/2, these shoes are size seven and this week(and others) I can't get them on because I'm too swollen. I'm online surfing for styles and stores to check out for sandals to have something where less is touching the top of my foot, but I have trouble with between my toes things. because I don't walk. I only have a certain number of steps each day and they use up fast. It is 9 steps from the stove to the refrig, 35 from the kitchen to my chair and so on and so on. I do try to soak in epsom salts twice a day, but usually I only have the courage for once. It took 8 mos to get my diagnosis and while they were deciding I was wearing ice packs close to 4 hours a day. I had some that velcroed around my calf, I tied plastic bags around my ankles, I come home from work and ace bandage blue ice to the worst pain. Now those spots are my greatest sources of pain. I don't wear nylons, they make my feet feel like the bones inside are broken, and the pressure on my legs is maddening. I do wear what I think current style would call leggings all the time. My accident leg was so sensitive to the touch of anything, but I found if I wore soft harem pants it wasn't as bad and then I bought a pair of leggings and I wear them 24/7 now and my sensitivity is way down. Go back to the introductions section and look up the sites listed there. DR Hoosman(sp?)
puzzle section is the best.

I am on Social Security Disability and I have a lawyer working on my settlement with the other guys insurance. I'm happy to sleep 2 1/2 to 3 hours. Sometimes it is in two segments. I'm usually awake from 1 to 4 or 6.

It is just me and my husband, he takes care of me. I can't even think about 6 children depending on me when both of my feet feel like they are being tortured.

Sorry to hurry, but I have an appt. You can pm me with questions and I'll answer this evening. I take sleeping meds and they help, 'cause before that I wasn't sleeping at all. But I don't get up when I'm not sleeping, my body needs the rest and I try to keep my mind as quiet as possible. I sleep in a recliner anyway. I can't lay flat because when I get to sleep my ankles and legs touch each other and wake me up, now that's a bummer.

God bless you and your whole household. I have ten grandchildren so I know a group of kids and their demands, but I have the privilege of sending them home.

You are right it is good they've discovered it soon. My doc would say you are a good candidate for remission. I've had 3 blocks of lidocaine and cortisone, and my 4th is scheduled for June. That takes it from a 6,7,or 8, 9 or 10 down to a 4, 5, or if I don't behave myself 6, but it took a lot of the swelling away which was a major major deal.

gotta go,
later
gramE

Sorry to hear about your diagnosis but it is good that you got it so quickly; some people go years before they are correctly diagnosed.

For my daughter, what has worked best is ketamine infusions. Join RSDSA.org and you can get a wealth of information there. But, if it was me, I would go straight to ketamine. Meds never worked for my daughter and she took about 6x the dose of lyrica that you are on plus dozens of others.

good luck to you!

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

Thank you for all the kinds replies.

The numb spot has gotten worse...now it is sensitive to even my clothes touching it. I guess I will wait until tomorrow...but I don't expect it to get better. On the other hand, my feet haven't been too bad today. =) I needed a good day.

I definitely have a lot to think about right now.

again..thank you.

6kiddos, welcome to the forum. This is a good source for information, support and sometimes to just "vent".

1. Footwear is trial and error. I have CRPS in my foot and had to go with a "wider" shoe so as to put less pressure on the foot. And be sure it isn't too tight on the actual size as well, when in doubt...go up a half size. Different shoes put pressure on different parts of the foot. I often switch brands of shoes 2-3 times during the day as it feels good to have those different pressure points. Buy quality footwear only. You get what you pay for here.

2. I personally wouldn't use ice. Too much information about the negative effects of it. Like others, I used ice before I was properly diagnosed as I hadn't heard of the problems with it. But once I did, that was the end of that. Most of my doctors had no idea about the ice and gave me the "skeptical eye" when I told them of what I have learned. But these are the same doctors that rarely have seen CRPS. One had seen only 2 cases in 26 years, so when you run into that situation, you keep looking! Get multiple opinions is probably the best advice I can give anyone in the "discovery" period, which is where you are. It is very important that you find professionals who have actual EXPERIENCE with CRPS. Ask them point blank..........this is a very misunderstood disorder, even by doctors. You are no doubt finding that out!

4. Neurontin is the cornerstone medication for me, but meds are a very individual situation. How long did you try the neurontin? It made me feel a little spacy too when I first started it, but that side effects as well as the dry mouth, mostly went away after about 3-4 weeks.

5. I have always had problems with the pain scale. Pain is subjective. What one person would call a 3 another may call a 6. Because of that, I choose to give them a number, ALONG WITH a description. I have a good link to that somewhere, I will see if I can find it. The pain number, along with a description, is more accurate and helps everyone concerned understand where you are at.

6. Paying for this? It's difficult. I am on the state high risk pool for insurance as no private insurance company will touch me. Thank god I have the state program to rely on. I just won my Social Security Disability case so that helps pay the bills and because of SSDI, I can go on Medicare this coming fall. So that helps too. But the economics of situations like these are difficult to say the least.

7. Sleep IS really, really important in handling chronic pain. I have spent a lot of time in search of the "holy grail" of sleep. Again, it is a very individual situation. You have to experiment. I have changed my sleep habits and environment (Google for basic sleep tips) and I also take some Trazadone before bedtime, which helps quite a bit. Trazadone is a pretty safe, common sleep medication. And it is cheap to boot. Talk to your doctor. But keep trying, as sleep is so very critical!

Getting on this early is very important and you have done that. Now stay on it and don't be afraid to get MANY opinions! I went to 6 doctors, 1 Chiropractor and 2 Physical Therapists before I got mine properly diagnosed and then another year in figuring out how to best manage it. It has been quite a journey to say the least!

Good luck!

Below is the pain scale that I use with my doctors.

Comparative 1-10 Pain Scale

0: No pain. Feeling perfectly normal.

1: Very Mild. Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

2: Discomforting. Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.

3:Tolerable. Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain. You have adapted to it.

4: Distressing. Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the similated pain is initially piercing but becomes dull after that.

5: Very Distressing. Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.

6: Intense. Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain.

7: Very Intense. Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.

8: Utterly Horrible. Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.

9: Excruciating Unbearable. Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.

10: Unimaginable Unspeakable. Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

I talked to my podiatrist about shoes and he mentioned the Sketcher tone ups...I have some of those but cannot find one of them. Go figure...in a stupid cam-walker for 10 weeks (before I found the new podiatrist) so now I have lost one of my shoes! ugh. I have to search more when I have the energy or not hurting too bad. I may even have to clean out my closet..yikes! LOL

Anyway, my leg is still hurting pretty bad. Not all the time, only when I have to lift it, it rubs against my clothes, fan blows on it, etc. If I am perfectly still, the burning will subside eventually. When I move it I get this very sharp, tearing pain. (or when it rubs against my clothes). I have tried the cream I have for my feet and tramodol...nothing is really helping. I am not sure if I should call the after hours line. When I talked to triage 2 days ago they said to give it a few more days. Well, I have and it is still bad. I will mention it to the dr. when I get my next block (Wed)...but I really don't get to talk to him in that situation. What would you all do? Is this normal after a block? I figure he might have nicked a nerve or something and that is causing this but I am not sure.

Thank you everyone for your kind responses. It is nice to know people care and understand. =) My dh is starting to show he is concerned. He even wants to go to my follow-up appt with the PM dr. He hasn't gone to any appts so far except the block (because he had to drive me). I have noticed that since the block he is becoming more attentive to my needs and pain. I have also noticed him being more tender with me too...wanting to take care of me more (not that he hasn't cared for the last 18 yrs...I was just able to do a LOT more and he could provide for us while I took care of kids and home, yard, etc).

Again, thank you for all your help in answering my questions.

Janel

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!

Hi 6kiddos,

So sorry to hear about everything you're going through. I can't answer all of your questions, but I have a couple things to add for some of them.
First, I hate wearing shoes too. Tennis shoes are completely out for me since as soon as I put them on the burning kicks in. I wear Naturalizers or Aerosoles. I have a pair of sandals and flats with these brands. For me they are comfortable and not as expensive as going to a specialized foot store.
I am on Lyrica 300mg a day. I have been on it for 2 years. It helped in the beginning for a couple months, but since hasn't done much (of course I'm not sure what would happen if I got off of it). As for paying for medical expenses, I wish I could help you. I think it is something we all struggle with. I looked at my budget and cut out whatever I didn't absolutely need so that I could spend that on medical care.
My only advice for treatments would be to do as much as you can in the first year since it seems like the longer one has this the harder it is to get rid of it. I hope that you find something that works! If you need anything else don't hesitate to post!