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Old 01-23-2009, 11:53 PM   #1
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A difficult week -- Glad its over

Hello everyone,
Haven't been here in a while -- I think my last post was that I was going into see my doc because my pain has gotten pretty nasty so we were going to discuss options -- Well, I decided no blocks -- too afraid, plus the possible problems that can arise because of them. He gave me a medication called Trileptal. I'm getting frustrated -- So many meds have become part of my life. Lyrica, Cymbalta, Vicodin, Norco, Lipitor (high cholestrol) and now this Trileptal stuff -- My memory is zapped, I've gained 45 pounds in a year cuz of these meds (I know that not everyone gains weight but holy moly -- I sure did) and it's becoming hard for me to do my job -- I do love my job, but I tell ya, if I could SSI, I'd quit in a heartbeat.
This post isn't a very happy one. Guess I'm feeling a bit down. Hoping we all have a better day tomorrow.
Hugs,
Deb

 
Old 01-24-2009, 12:38 AM   #2
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Re: A difficult week -- Glad its over

Hi Deb,
I wish I could give you a hug, but instead I will l have to send you many hugs via this post...I am so sorry you are having a difficult time with all the frustration and feelings of being overwhelmed that go with it...
Does your doctor have any kind of explanation or insight as to why your pain seems to be increasing and does he have any strategy or suggestions? Deb, what is the new medication targeting? Is it for local pain (feet) or more of a neurological pain control?

I know it is so hard to work and be in chronic pain! I am in the same situation working 40 hours a week. In fact, yesterday, I didn't go to work because I was up all night Wednesday with a lot of burning pain in both legs and pain in my left injury ankle..Baaaaaad! When I went to work today I had a pile on my desk, a gazillion e-mails and phone messages, and I was in PAIN..

I know how it must be for you getting up from the desk at school and working with the students, trying to focus on them when you're in pain...

We can only keep trying different strategies and keep hoping..my pain management C.D's help me a lot, particularly one called "Pain Relief" by Shinzen Young..I listen to it while I'm trying to fall asleep and it has been very helpful. I am up late tonight searching the web for information on neurofeedback which is a system used to try and retrain the brain to give correct impulses instead of the faulty ones our nervous system are putting out causing the CRPS.

I know our lives have changed, our bodies have changed, our identities have changed..it's a lot to absorb..I am seeing a pain therapist who lets me cry out all my frustration and then tries to get me on track to neutralize my emotions. She has given me a really good workbook called "Managing Pain Before it Manages You". It really is excellent and has helped me a lot.

I am thinking about you and glad that it is the week-end so you can rest and regroup. I know there are many concerns and worries like financial ones, (I know that one well!) etc., but i hope you are able to take at least a mental/emotional break and give yourself a rest..
Thinking of you lots and sending hugs,
Tigerlily

 
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Old 01-24-2009, 06:27 AM   #3
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Re: A difficult week -- Glad its over

Hi Deb, I know it's so hard to try to get the pain under control when you first get dx'd with RSD. I seems like nothing helps and the pain keeps getting worse instead of better. It takes a long time it seems to finally find the right combination of medications that will help. My heart goes out to you and I know having to work and dealing with the weight gain from the medications don't help. Is there a reason why you can't file for Social Securtiy Disability or disability through the school system? I know the wait for SSDI can be a long process but sometimes you have no choice in the matter. I know for myself, I didn't have a choice since I had lost use of left arm due to RSD and Cervical Dystonia combined. It took my 2 yrs to get mine and we had to struggle during that time but at least I did get it and my backpay. I hope they can soon find a combination of medications that will help you. Like I said the first few yrs are the toughest when dealing with RSD.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 01-27-2009, 11:13 PM   #4
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Re: A difficult week -- Glad its over

Hi Rayefaye,
Our district doesn't have California State disabiliity. We have 3 months of 1/2 pay and with my husband's job possibily going away, I didn't want to go out on disability until I absolutely have to. I suppose I could file for SSI, but I don't want to risk the very real possibility of being denied.
I'm still hurtin alot so today I called my doc and my Norco was doubled from 2 per day up to 4 daily. All I can do is try and work my contract, which is 15 hours a week. My body tolerates the Norco pretty well but not sure I'll be able to do my job taking 4 daily. I'm going to try it though, beginning tomorrow. Some know about my RSD on my job, but nobody knows about the pain pills.
Have you taken Norco? If so, what was your experience?
With all this weight gain with these medications, I really hoped things would stabilize and stuff. I would say the pain increased about 3 weeks ago and holy cow, what a drag it is. I'm fat, I'm sick with RSD, and my feet, my legs and my knees hurt soooo much. I'm optimistic the increase in the Norco will help.
Guess that's it for now,
Deb

 
Old 01-28-2009, 01:00 AM   #5
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Re: A difficult week -- Glad its over

I take 4 norco a day and it doesn't affect me at all. When your body adjusts to a med you should stop having any side effects like tiredness,etc. The only "side effect" I had was going from 7.5 to 10mg and for 2 days I was a little sleepy but then that stopped and been fine since then.

Hugs,

Karen

 
Old 01-28-2009, 12:21 PM   #6
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Re: A difficult week -- Glad its over

Hi,

When do you guys sleep? I see the times that you are posting messages and it makes ME tired, although I know I have been up at those hours and online because of the difficulty I have sleeping sometimes... I hope that you all have a restful night of sleep soon.

I have gained weight on the meds, too. My PM doc wrote me a script for Topamax yesterday, I pick it up tonight. It will replace the Neurontin, which I have been taking since November (900 mg a day). He told me to take both the Neurontin and Topamax for a few days tigether, then taper off to just the Topamax. He did warn me that a lot of his patients have trouble with side effects onTopamax. All I can do is try...I will let you know how I make out.

Working is HARD - I work a 35 hour week and then I have all the doctors, PT, etc. I'm exhausted. My husband has had to take over most of the running of the household. My kids are teenagers (and really not as helpful as they could be!! our fault for not be tougher on them!), and one of them drives, which helps. Weather plays a huge role in how I feel, I can't wait for spring and summer.

I just recently doubled my Percocet, I didn't notice any big difference in how I feel (except that the pain is more tolerable). And I have a 3rd block scheduled for this Friday. I know that they are risky, but I tried to find the best doctor possible to do them and I really want to get better!

I truly wish you the best, I am amazed at how my life has changed and I try not to project too far into the future.

XOXOXOX Sandy

 
Old 01-28-2009, 01:22 PM   #7
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Re: A difficult week -- Glad its over

Hi Deb, first of all big huge hugs!!!! I'm sorry you're hurting and working, I'm not sure if I'm lucky or not, I was told to leave work due to my at the the time undiagnosed RSD and am not allowed to return without medical clearance.
My advice is apply for the SSI now, the worse that happens is they deny you, then if you reapply in the future,my (albeit drug addled) understanding is that the benefits will backdate to the original date of application. Once I started to realize I probably wouldn't be allowed back to work I contacted some disability lawyers in the phone book. They looked at my case and are pretty sure they can win. I'd send you their number but they are in the midwest only, if anyone else wants it please let me know I will happily share. Most seem to work on contingency basis and take either 25% or $5,300 of your back benefit, whichever is less. Apply now is all I can say. Do whatever you can to insure some sort of financial stability, apply for everything. You've worked for years and paid taxes into the system just in case you needed benefits and to help those that do need them. Don't feel guilty about applying for anything, it's your tax money being spent and you deserve it just as much as anyone. Don't end up like me, I found out much to my shock and dismay that the only thing I am eligble for through the lovely state of Illinois is food stamps since I don't have children. I can't even stay at homeless shelters due to the drugs I'm on. I got lucky enough to have a couple of friends let me stay in their guest room for the time being.

Yesterday my doctor told me that he has never seen anyone in this much pain on these kind of meds, and I thought I had a light load after reading these boards. I take MS Contin 2x a day and Klonopin 4x a day if you want to try those, with Voltaren gel for breakthrough joint pain. I would talk to your PM doctor about the Voltaren though, I am incredibly sensitive to a lot of medication and it works great for breakthrough pain, but only for joints. It does have a bit of a "granny smell" to it and you have to wait 10 minutes to put on clothes after applying, but I love the stuff. If you don't have insurance it is pricey (I about died when I saw how much my insurance "saved" me) see if they will give you a sample first.

On a bright note, I was lucky enough to get my boss to give me a 12 week unpaid leave today since my FMLA runs out on Feb 17th and I will lose insurance without it. Yeah! I might actually get to see the new pain management guy!!!

 
Old 01-28-2009, 07:01 PM   #8
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Re: A difficult week -- Glad its over

SSI is for low income,a couple can't make more than $940 a month and it's not retroactive. SSD,disability with enough work credits, is only retroactive if you are denied and then immediately appeal. If you are denied and then let it go and reapply later on, there is no back pay.

LOL Sandy. I do sleep but not usually until around 4am. I've always been a night owl and the rsd just makes it easier for me to stay up till all hours.

Hope everyone's day was a lesser pain day. Big hugs to all that didn't.

Hugs,

Karen

 
Old 01-28-2009, 08:38 PM   #9
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Re: A difficult week -- Glad its over

Hi Deb,
I am so sorry you're still having a hard time ..I hope with all my heart you have some relief with the added pain meds !! My heart goes out to you.. Have you given any more thought to having a sympathetic nerve block? Is your doctor opposed to them? Deb, what does your doc say about your increae in pain...Would physcial therapy or aqua therapy help? I'm just wondering if you're doing too much.. I want you to know that the procedure for the block itself is not bad at all...I am the biggest fraidy cat in the world ..really..and the blocks don't take long and I've done them without sedation. (I'm afraid of sedation!!!!!!)

I've had three already and as I had written in a prevous thread, I had a hard time after the last one. It did warm my leg up a lot, though, even though I had a bad flare-up of burn pain for about three days. My foot had been increasingly icy cold (lower leg, too) for a long time..and the block at least brought it up to a normal temp, which means at least it helped with circulation temporarily.
Call my crazy, but I'm going to give it one more try on Friday..My doc got authorizaton for another lumbar block and I'm going to see how it goes on Friday! I've got to try because my pain is increasing, and I'm losing a lot of muscle mass in my foot and leg...

I will keep you posted it on how it goes. I'm also having another MRI on my foot next Tuesday (I can't believe worker comp approved it!!) I haven't had an MRI on my left foot since last June..I am curious to compare the new MRI with that one.

I forgot to take my afternoon dose of Neurontin today at work and ,man, am I feeling it tonight, my legs and feet are aching and burning...I can't wait til it's 9:00 pm to take the night dose. Woo hoo, it will be the thrill of my day...........

Have you been able to get any guidance about applying for SSI or any kind of disability, maybe from an attorney?
Deb, I am thinking about you and I pray that you are able to get some good sleep tonight. Everyone is here for you..
Warm hugs,
Tigerlily xoxox

 
Old 01-29-2009, 10:07 PM   #10
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Re: A difficult week -- Glad its over

Hello Tigerlily,
Thanks sooo very much for your very kind post. I had taken a Norco at 8 am yesterday morning, just before work and then by 10 I began to hurt so I took another 1 at around 12:10. I'm brand new to Norco and didn't want to take another one 2 hours later without talking with my doc -
About those blocks -- Yep, I'm a big chicken. And, since your 3rd one gave you trouble I'm apprehensive. I'm pretty sure that I've read on here that it can cause spread, is that true for some? I suppose I should be brave and maybe I could be that lucky one who gets a month of relief and then I would only need them once a month. I'm off T/TH so I could do it first thing in the morning and have the afternoon to rest (are you able to resume all activities the same day?) and then go to work the next day?
My work attitude is that I want to try (I'm sure there's some out there that think I'm crazy, but I really LOVE my job) to finish out this school year (last day is June 11) and then make some of the big decisions regarding going out on disability, etc.
Gotta run for now, take good care,
Deb

 
Old 01-30-2009, 03:15 PM   #11
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Re: A difficult week -- Glad its over

Hey Deb,
I am so sorry to hear your having a tough time... Like someone else said on their post ( can't remember who it was).. The first 3yrs or so are the toughest.. Its really weird our whole body is just so flared up.. All our nerves just go nuts..

The whole RSD thing I think is a process.. After reading some many post for the past few yrs.. It just seems like when your first dx its the hardest time.. Just getting the right cocktail meds is hard.. It sounds like that where your at right now..

Don't give up on work.. I think its so important to work.. Not only does it keep the body moving.. but it helps out mentally.. As we all know.. Our mental state means a whole lot for RSD.. So keep positive.. and keep working.. I stopped working for two yrs.. I refused to collect.. I did not want to be disabled at the age of 40.. So I never applied.. I struggled through it financially.. and I made it....
I can tell you.. For me.. Staying home. I think made my mental state worse.. All I did was look at the same four walls all day.. Did some house work.. It just made for such a long day.. and sitting around with RSD is not good for you.. It just makes the RSD worse.. Its not good for the muscles.. etc....

As you read I am sure.. After all this time.. going through the H*** that you are going through now.. I am back to work.. I started part time and now going to full time as of this Monday.. Don't get me wrong.. The RSD is still there.. I feel it everyday.. There are lots of bad nights.. This week being one of them... but I rather make money being in pain then sit around and think about RSD 24/7 and feel sorry for myself.. That is just my personality.. I've always been like this.... I have learned to let things go so much... . My house is nothing like it use to be.. and you know what.. I don't care.. and nobody else in the house does either...
So you hang in there.. Take the meds.. I do everyday for the past 8 yrs.. and I can't even tell that I take Norco...etc.. My body is so use to it.. When I first started on the meds.. I was sick for weeks.. Tired I couldn't eat.. For me, I lost a lot of weight.. Its not always pretty to lose weight.. People think your doing street drugs.. I hated it.. but you know what.. I have the attitude that I just don't care what people think anymore.. I do what I have to do... Friends and family use to get so upset when I couldn't make it any where.. Just don't care.. I Learned to take care of me... I come first along with my family..
You stay strong.. You can and will get through this... One day You'll be where I am..
HUGS..
Michelle

 
Old 01-31-2009, 10:11 AM   #12
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Re: A difficult week -- Glad its over

Michelle,
Oh my gosh, your words were truly wonderful to hear and I thank you from the bottom of my heart. It helps me knowing you've had it for 8 years and you've made it. You're working, you have a family and that you're so very strong. It encourages me and lets me know that I'm gonna make it, no matter what. I did ok at work taking the Norco, and I see my doc in February because at that point, I'll have been on the Trileptal for a month to see if improvements happened. Sometimes I'm so very achy. The bottom of my heel just kills me and other areas of both my feet kill me too. Another thing that really upsets me is my weight -- I used to walk for exercise everyday but I'm unable to right now because of my leg and foot pain -- Anyways, I'm pushing 200 pounds and I cannot believe it!!! UUUUUGGGGH! I was one of those thin gals ALL MY LIFE, except for now.
Thanks for the insight regarding staying at home versus working.
I wonder why the RSD is the worst when we're new. I'm just over a year and a half at this point. I'm achy all the time and man oh man, it's sooo difficult for me to get up from a sitting position, and it hurts. Do you have that problem? Is that a common problem from RSD?
Thanks again for your wonderful words, it's appreciated.
It's a big day today, our youngest is going to winter ball with a very nice boy AND we're heading to High School Musical today at 3:30 with our oldest daughter, who just happens to have disabilitiees.
I'm learning that my health does come first -- Before the laundry, before the cleaning of the closet, etc etc.
You take good care of yourself and I hope to hear from you again soon,
Deb

 
Old 01-31-2009, 06:12 PM   #13
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Re: A difficult week -- Glad its over

Deb,
Thats a good question... Why does RSD seem to be worse in the beginning...
This is just my opinion.. First off your not being treated correctly when first dx... by that point the RSD is at an acute stage.. Mentally your feel your ready to go nuts.. you've lost many, many hrs of sleep.. Which messes up your body.. Just having mental stress can keep a constant flare up..
Second.. Proper cocktail of meds is so important and that takes a while cause were all so different..
Third.. Not having a dr who knows what he's doing and physical therapist.. Most do more damage then good..
It just takes a while.. all of it is trial and error.. I didn't just fall into the right treatments.. It took a good six yrs...
Yes..I do get the body aches.. all the time.. It feels like the flu.. close to it.. and the stiffness.. I know this sounds strange after taking so many meds.. but motrin helps me out alot with that.. doesn't take it away completely.. but being at work I sometimes rather take that so I don't get sleepy.. The aches usually come more with the colder weather..
I didn't start out with the aches.. that took a while.. The swelling and the burning I get a lot with warm weather.. but its weird.. cause warm compress help and their warm..
Your just starting out with it.. 1 1/2 yr is not all that long.. Give yourself some credit.. you'll get through it.. Don't stop moving.. It makes it worse.. Its just not good.. If it gets to much for you at work.. don't be afraid to say hey I can't do this anymore.. You will know if that time comes.. It may never...
Again.. I just go the point.. I got tired of being home.. My family didn't want me to work.. I felt if I didn't try I would never know.. I am glad I didn't listen to them.. lol.. If anything going back to work has helped my mental state the most.. and with that.. it has helped my RSD.. ALOT>..
Hang in there....
Michelle

 
Old 02-01-2009, 01:26 AM   #14
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Re: A difficult week -- Glad its over

Michelle,
I'm always happy to hear from you -- thanks again. I am really fortunate to have an RSD specialist (Dr. Franklin Kozin) here in San Diego. He actually is very experienced with it. Some unfortunate information though is that when I asked him "how many RSD patients do you see typically", his answer was "Deb, I see 6 new ones every month" -- I almost died when he said that. I honestly couldn't believe my ears. But, here in Southern California, we only have him, a doc up at UCLA, and a doc at Loma Linda who treat RSD. That's an awful lot of people getting and having this cruddy stuff.
Okay, so I can't remember if you've already said this or not, but how many Lidocaine infusions have you had? I'm giving very serious thought to it, and giving much less thought to the blocks -- I checked out the infusions on the web, and they're pretty encouraging. And, I know that you swear by them. You mentioned you stayed in-patient for 5 days and then after that they gave you the oral equivalent of it, right? Are you still on that? My insurance is really good, so if the doc can do it, the next step is to find out if insurance will pay -- I would imagine they would cuz they've covered everything else. I recently got artificial saliva cuz my mouth is soooo very dry and dry mouth can cause tooth decay. I really feel for the w/c people because it sounds like they've got huge frustrations with getting what they need.
My daughter looked beautiful tonight for the winter ball. Will have to see how it went, she got home at 11.
Gotta run for now, will wait to hear from you. I'm hoping you have a great day tomorrow, and let's hope that the Steelers win!!!! Our first favorite team is the Chargers, but 2nd is the Steelers cuz my husband lived in PA until he was 10.
Take care,
Deb

 
Old 02-01-2009, 07:23 PM   #15
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Re: A difficult week -- Glad its over

Hi Deb,
Hope you were able to rest this week-end and have less pain than last week! How is the new med working out?

The 4th nerve block that I had on Friday did not result in a repeat of the last one which resulted in a terrible burning flare. This time, the block brought my leg and foot up to a normal temperature as they were so icy cold..I had a little bit of relief from the pain and this time around it did help the burning pain!! I really do think I may have nerve entrapment and new neuromas for which my foot doc would not do surgery because of the RSD. He suspected nerve entrapment and that's why he gave me so many local shots in the foot to try and loosen up the tissue.

It is so great that you might be moving ahead with the lidocaine infusions and that your doc is willing to work with you in making that happen!! I am very excited for you!! It could be the treatment that brings you back pain-free!!! Keep us posted on the developments with insurance and the possbility of this happening for you! I hope you have a good week at work!!
Hugs,
Tigerlily

 
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