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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 05-29-2011, 06:48 AM   #1
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New RSD Diagnosis....Please help

I am new to the boards. I had Tarsal Tunnel Release surgery on 3/22 and everything had gone very bad. The ortho surgeron sent me to a PM clinic and she gave a diagnosis of RSD.

Can hardly do any activities of daily living for the pain much less leave the house or go to work. (Which I think I have lost my job now along with my health insurance). I have already been out on medical leave for 12 weeks. I am the only one that brings income into the household, so I have that stress also. We were in a good place before my foot went bad.

I have elevated my foot to help with the swelling. One can only lay in the bed/recliner for so long.

I have burning, tingling and stabing pains in the foot, andkle and leg. The foot/ankle swells up and I can not put a shoe on. I have alot of color chnage in the foot such as blue (mostly on the bottom), then it can be red then it can turn to white. However sometimes in the morning the swelling and pain aren't so bad but get worse as the day goes on. Also if I am on it to do anything extra, like going to the doctor, it will still be swollen in the mornings. Sometimes it feel like my foot will explode. One time it felt like something burst in the sole of my foot when I was standing on it.

The physician gave me neurontin, which I have to slowly increase it, which is helping some. Also some muscle relaxers, (because I have muscle cramps) and zanax and vicodine to use when needed.

I feel like the nerve is still trapped somewhere but the ortho doc and PM doc said no to that idea. I wanted to get an MRI for the foot,ankle and leg however that has been a no go also.

I am sick of using crutches,walker and/or boot.

Sorry if I am rambling I have got to get back to some sort of normal life. Any comments/suggestion/questions are welcomed.

Thank you.

Last edited by paininthefoot11; 05-29-2011 at 06:49 AM.

 
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Old 05-29-2011, 09:43 AM   #2
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Re: New RSD Diagnosis....Please help

hey pain in the foot.. RSD can be a real pain in the a--I too was the only means of finance for my house..now i cant do my job clean house, fix things, paint, yard work etc..one can hope that of all these treatments and drugs and PT that we can find some kind of life in the middle. as my phyisical therapist says not getting worse is a single most achievment for us with RSD.. my father wld say its like shoveling poop against the tide, we must always work at it to not get worse, and then we still might.. so ....
listen Ireally hope you can find that remission so many speak of ..but if not we are here to answer questions , support, listen and be a family for each other
good luck to you in this arduouse journey of RSD... be well and godspeed

 
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Old 05-29-2011, 04:57 PM   #3
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Thumbs up Re: New RSD Diagnosis....Please help

I know just how you are feeling and I am so sorry that you are now going thru this. I was where you are 6 years ago. Have you used all of you family leave act, sick days, and vacation days from work? I would first look into that. If you do have rsd/crps it would be a good idea to go ahead a file for ssd. At the very least take whatever help you can get from your local social services. It is amazing that after 6 years I can still remember feeling the same way you do. If I can answer questions please feel free to ask anytime. In the mean time try to keep a positive attitude!

 
Old 05-29-2011, 05:02 PM   #4
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Re: New RSD Diagnosis....Please help

I too hope that it goes into remission or maybe not even rsd. But All we can do is hang in there. What stage and locations do you have it?

 
Old 05-29-2011, 05:44 PM   #5
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Re: New RSD Diagnosis....Please help

Welcome and sorry it is under these circumstances. it is a tough diagnosis to accept, especially when we do not even know the full extent of the pain and symptoms. mine are in my hands and arms (from multiple bilat hand surgeries). Everything about normal daily living becomes as abnormal as anyone can imagine and most people can't imagine (people that don't have this that is). We here on the forums do understand and are here to support, educate, listen, cry, laugh and just be here for each other, so know you always have a place to come to and be your pain in the foot!! lol. We have to find some humor in our daily lives or we would go more looney! any questions just start typing!!

 
Old 05-29-2011, 06:41 PM   #6
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Re: New RSD Diagnosis....Please help

gspence, I really do not know where to start looking for local assistance. Any suggestions would be helpful. I'll take what I could qualify for. As for SSD, I am under the impression that I have to be disabled for at least six months just to apply.

I have used all sick pay, time off, vacation pay and the 12 week FMLA allowed by the company. I have not recieved a pay check in almost a month. I asked for an extension on the medical leave, however I haven't heard anything from them on that. Even if they give me more medical leave time so I might keep my job, they stop paying their part for our health insurance. Which means I will have to pay for it through COBRA.

RDS is located on the left foot/inside ankle and a small part of the leg. I had surgery on 3/22 and seen the PM doc on 05/25, that's when I was diagnosed with RDS, so I believe that it is in the first stage. Right foot has had all the symptoms of the left foot just not as bad. The neurontin is helping some but not enough, but I am still increasing the dose at tthis time. I am scheduled for a sympathetic nerve block on 6/1.

It is very hard to keep a positive attitude when I am just so angry right now.

Thank you all for the encouaging words and support. I need all of it right now. My family does not really understand what I am going through. They do not live close by.

 
Old 05-30-2011, 07:44 AM   #7
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Re: New RSD Diagnosis....Please help

Have you been to a pain management dr. to get sympathetic nerve blocks? They helped me a lot and got me going on the right track of a holding pattern of not getting worse and maybe slightly better, until I had to have an emergency surgery on the same limb in March. Then things went downhill....

But the sympathetic nerve blocks are important.

Hang in there. It is rough, but we are all here to support each other.

 
Old 05-30-2011, 08:14 AM   #8
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Re: New RSD Diagnosis....Please help

Thanks for the encouragement.
I also think something else is going on with the foot/ankle/leg.
It gets cold and white. This morning my foot was blue at the base of my toes on top of my foot. The bottom of my foot was blue(really dark blue) just sitting here at the computer. And the surgeon did say that the blood will pool when it hangs. (I told him that it was getting blue on the bottom of my foot.) But it is way darker than the other foot and it was on the floor. I am also getting red specs on my affected leg.
I asked the PM doc if it could be vascular and she said no. It wasn't as cold and white as it is now, but I haven't been very "active" this morning.

Sometimes I think they will have to amputate the foot. And other times I believe the foot is getting better. I do not know what to do except to cry. And nobody likes a cry baby.

K Lana, why did you have to have emergency surgery?

Last edited by paininthefoot11; 05-30-2011 at 08:16 AM.

 
Old 05-30-2011, 09:36 AM   #9
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Re: New RSD Diagnosis....Please help

I had osteomyelitis in my tibia. I got it while I had an external fixator on during my previous surgery last summer/fall.

 
Old 05-30-2011, 10:14 AM   #10
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Re: New RSD Diagnosis....Please help

Dear Pain.....,

First of all you have to be out of work for 5 months for SSD but you can go ahead and go online and apply. As far as social services.... my husband and I got medicare untill I got medicaid. Now my husband still has medicaid and it is my secondary. We get food stamps and at the beginning before my checks started we got money from them. All you need to do is plan a day to go to your local social services office, I would get there as early as possible, because it does take a while for that first time! If you have children or any other dependents you should get everything for now untill SSD starts up. When I was approved they still did not even know what was wrong with me and I got it on the first application! I am in stage IV in both legs from the knees down and as of three months ago in my face and neck. Live as you know it has changed but you just have to try everything the doctors say!!!!!!!! I have had the epidural, nerve block, electrodes, and now I have the interthical pain pump inside. I have tried every medicine out there and have not been able to find one that works for everything YET. The pump has morphine, bivicaine, and prialt. Also no matter how bad it hurts and how much you have to cry you must do pt. I do mine here at home everyday. My motto is no pain no gain. I WILL NOT let the muscles and tendoms go to waste. This is hard but it is a one day at a time struggle. Just tell yourself that if today is bad then tomorrow will be much better. Please reach out to everyone on here. I too just signed up yesterday. Noone can except us. Most people say "Well just get up and get over it, you will forget about the pain". They have no idea. So Cry Scream Share Ask and maybe even Laugh a little thru this site! Do you know how we can invite people to be friends on here?

 
Old 05-30-2011, 10:54 AM   #11
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Re: New RSD Diagnosis....Please help

I've tried it all. On the last stop now with the interthical pain pump. I still do my pt at home.

 
Old 05-30-2011, 07:36 PM   #12
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Re: New RSD Diagnosis....Please help

Hi. I was "officially" diagnosed about 4 weeks ago. Before that, it was highly suspected. I have my 6th lumbar sympathetic block done tomorrow. (it was going to be last week but I got the stomach flu from my kiddos. ugh!) For me, they have worked for the pain about 4-8 hrs. BUT the burning and sensitivity have gotten MUCH better. Though, I do think the first one caused some spread to my upper left leg (before that it was just in both feet. I feel like I am pretty much in a holding pattern right now. I will really test that when I go the longest without a block coming up in June. (we are going on a family trip to WA from Phoenix. It is our yearly trip to get out of the heat and we usually stay about 1 1/2 months) I am not sure how long we will be gone..it really depends on me and when we feel like I need to be back for more treatments. I am even considering leaving my kids there and coming back for whatever I need. (my 3rd opinion recommended a SCS trial which I am considering too)

Anyway, as much as my family tries to understand, they really don't. My kids are sweet and try to help and so does Dh. A test will be when we are with my family in WA (big reunion for my parent's 50th). My family really respect hard work (physical) which I can no longer do as much of.

While I am not the breadwinner, I am a stay at home mom. This has been a strain financially on my family with the medical expenses. (last year was a big medical year also and we are still paying some of that off on top of this stuff) I really don't think we would qualify for any social programs since dh makes too much (but with 6 kids, house payment, etc things are tight). My dh is now selling his baby (rx8) which is almost paid for (3 more payments) to help with medical bills and restore our savings (they took a BIG hit last year with $17k in medical bills). I feel bad about his car but really there isn't another option right now. I am thinking of trying to find a job, but I don't know what I could do. I don't think I could qualify for SSD because I have been a stay at home mom for 17 yrs now. (I did get my Bachelor's when my 2nd child was 10 mo. old though )

Anyway, hang in there. A good cry can be a good thing! I find it very therapeutic....even when I do it everyday.



J

 
Old 05-30-2011, 07:59 PM   #13
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Re: New RSD Diagnosis....Please help

Sorry to hear pain. Glad to meet you, just wish it was somewhere else. I had my surgery on 1/31 diagnosed in Feb, and have been unable to work since surgery. so far I am protected by W/C, but thet are now starting to balk. had a ct scan last week that they haven't decided to pay for yet, and have refused the spinal block my surgeon requested. They set me up with a nuerologist 6/20. Company Dr. so I have a feeling the real fights will begin. I can't get any help because of my mom's income(83years old) and my comp checks. i think we are about $50 over limit, go figure. As mine is still mainly in my left foot, with some burning tingling in left hand, I'm not sure I'd qualify for SSD, heck my job won't acknowledge RSD, want me to come back to light duty, answer phones etc.. Ican't even stay in one position for more than an hour. Sit, stand, etc. so I'm sure that would be fun. I did have a local block in my ankle wich did seem to help, so the blocks do help a lot of people. Read, research, ASK. There are enough of us here that someone has probably tried the treatments, meds. and other things and can give you helpful feedback and ideas.

 
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Old 05-30-2011, 08:45 PM   #14
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Re: New RSD Diagnosis....Please help

hey all.. first I must comment about ..amputation..dont do it.. that is like killing the patient to cure his disease...almost all the reports ive read show RSD spreads like a forest fire in the middle of a drout..
i ve done some research of late and aside from ketamine research. they also have HBOT, wich is hyperbaric oxygen therapy wich has been some what successful in treatment for RSD, also accupuncture and pressure. ive also read about calamare treatment but that seems to be the same as tens or scs.
I started with RSD in my toe ankle knee and hip and now i have it below the waist, part of my head and the suspect in my lft arm rght hand and back. this happened each time i went for nerve block or steroid injection. i know this is a hard thing to cope with and in response to what was said re comp and employer offering light duty. it is up to the drs if you can do this not your job, if you dr gives you a written criteria in wich you have shown you can do certain duties and this is what your job is offering then you are obligated to return(from what ive been told) but if they expect anything more than that than you have the right to tell them no. discuss light duty with your dr,s(not just one) all of them for this is your decision and your drs are there to make sure you are taken care of.... good luck and please research all possible treatments before saying ok

 
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Old 05-30-2011, 09:38 PM   #15
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Re: New RSD Diagnosis....Please help

My Dr. won't release me for nothing, so they can't say anything. That's why I go see their nuerogist in june, I' pretty sure. I've researched him on the net and he has no good reviews, and all of say he is just doing company thing. Even so far as accusing one patient to only wanting narcotics. Guess I'll just ride this show till then, then decide which way to go. Thanks for your imput.

 
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