New to RSD

Posted: Mon Apr 26, 2010 7:57 am Post subject: New to RSD

Sorry Linda and Jason for freaking out. Embarassed

Thank you for for replying. Very Happy

And the thing about the ice totally make sense thanks for that. Very Happy

Just been having bad couple of days. Crying or Very sad

I had a really good day couple days ago from my range of motion and stretching. Then pow these last few days have been the worse that I have experienced so far. Crying or Very sad

The swelling hasn't been as bad so I thought maybe I am doing better. Past few days I have been having excruiating pain from my foot shooting up into my lower leg now. Crying or Very sad

My ankle was so stiff and in pain I couldn't even walk on it and had to miss my p.t. appointment today. Crying or Very sad

Which I was looking forward to since he only evaluated me at my last one. Before it would mostly become more painful towards the end of the night from activity. But now the pain is more severe all day long so taking my pain meds pretty much all day long now. Crying or Very sad

I guess I just need to learn to take each day at a time. And of course each day is very different from the next. UH!!! I just hate not having control over this thing I think that is the part that is hardest for me. Mad

Thanks again guys for this it has helped so much. Wink

_________________
Tiffany Smile

"Our greatest glory is not in never falling but in rising every time we fall."
~Confucius

uber member Joined: 26 Sep 2008 Posts: 355 Location: Texas

Tiff,

Trust me, I completely understand about the freaking out part. Gosh, even after 6 years of living with RSD, I still have my moments of freaking out about what's going on with my foot.

I seem to have a lot of muscle cramps in my foot too. The best thing I've found that works is, keeping the leg/foot warm. An analgesic heat rub work, (if you're able to rub it on). I've also used a heating pad.

I hurt my foot while serving full-time in the Army. I did not seek any settlements, per se. I do receive compensation for the scars on my foot though.

Linda
_________________
Nothing to it, but to do it!!

Posted: Tue Apr 27, 2010 11:16 pm Post subject:

tiffany~
no worries....about the 'freaking out' part. youre new to this beast....confused and scared....its understandable. (and like i said im at a total loss as to why its like a ghost town on the forum....HELLO are you other members still out thee? or are you all out playin in the sun?)

linda's heating pad idea is good.....fleece blankets help to as they are light!
sorry u missed your pt.....keep us in the loop my friend!
~j
_________________
live life less seriously/make it count ~j~

uber member Joined: 26 Sep 2008 Posts: 355 Location: Texas

Yeah, where is everyone??? Annie, Pepper, Bill, Kelli, Pat...... what happen to you guys? We miss you!

Linda
_________________
Nothing to it, but to do it!!

Posted: Wed May 26, 2010 2:56 pm Post subject:

Hi Tiffany! Welcome to the forum. I'm sorry I'm so late to jump on this. I've been crazy busy at work and haven't logged in here in months Crying or Very sad

I really miss this place.

Linda and Jason rock. You got excellent information from them. I've read through the posts, and at the moment I have nothing to add other than a hi, welcome to the forum, and I'm sorry you're going through this.
_________________
Kelli
http://kellirsd.blogspot.com/

Posted: Sun Jul 11, 2010 7:32 pm Post subject: New to RSD

Hey everyone sorry been gone so long my computer pooped out of me and I had to resinstall everything just found the page again. Well, here is an update any tips thoughts would be great. Ok, so I am almost at 5 months with this wonderful condition. I was going to p.t. 2x a week and things were really looking up for me thought i might be done like 2-5 months tops. That was until I had a flare up that has been continuing for almost a month now. Crying or Very sad

I have noticed that the swelling is moving up from my ankle into my lower leg. Before the swelling was from the ankle bone down. Since this flare up it has been from the ankle bone up. I have been taking the nerve meds I was given everynight since flare up to help me sleep. Is this a normal pattern developing? Is that how it goes good for while then flare up for while and so on? I have a follow up appt w/ my primary dr. in few weeks I need to get a better idea of things before I meet with him. I have a pending claim w/ the property owners where I got hurt my attorney says we cant move forward until I am done w/ treatment. I know 5 months may not seem like a long time but is that enough for me to consider a pattern building. And if so knowing how unpredictable this condition can be if this will or might be my pattern then I might need to have him refer me to dr. that can be more helpful since he is an ortho dr. I have my follow up on 8-3 so need any feed back before then. You guys rock thanks. Very Happy

_________________
Tiffany Smile

"Our greatest glory is not in never falling but in rising every time we fall."
~Confucius

uber member Joined: 26 Sep 2008 Posts: 355 Location: Texas

Hi, Tiff!

Bad news, RSD does spread. Plus, your treatment may never end. Your best bet would be to try and see a Pain Management doctor.

Hope that helps you out a little!

Linda
_________________
Nothing to it, but to do it!!

Posted: Sun Jul 11, 2010 11:02 pm Post subject:

hi there tiffany~
great to hear from ya again...glad it was your computer pooping out an not ya jumpin ship Razz

uhm let's see....sadly i agree with linda....
1. rsd can [and does] spread....
2. some, well depending on who you ask most, ppl's treatment doesn't 'end' it's just adjusted as your body adjusts to the RSD.
3. different dr's will say different things....so talk to as MANY as possible

as to the flare[s]....that answer is yes and no :s yes it is normal for some....but not for all. with RSD, not everyone has all the symptoms everpresent....nor are all symptoms seen in everyone.....

the moving of the swelling could be:
1. a simple aggrivation due to weather changes or activity changes
2. aggrivation due to another injury
3. a spread....

or, if you're lucky...

something all together different [sorry but that's not likely].
a pain specialist would be good to talk to....ortho's and neurologists are good too....plus a g/p of course, oh and a physical therapists....oh and u might not think about it....but a pharmisist too [as they can help determine how meds can interact many times more then a g.p can...and yes im speaking from experiance]

hope that info helps....also you could go to the main site and print off all the info you need Smile

you can even download the pamphlet too Razz

~j
_________________
live life less seriously/make it count ~j~

Posted: Mon Jul 12, 2010 9:17 am Post subject: New to RSD

Thanks Linda and Jason for replying back to me. Very Happy

Since my orth on my last follow up said I should be done with tx in 3-6 months should I be looking for another dr Question

He orginally was gonna ref me to neuro dr. if I wasn't improving w/ the p.t. Well, like I mentioned I originally was but the symptoms/pain has returned and stuck around almost month and with possible spreading is it time for me to go to neuro dr Question

Also, in regards to working I was orginally thinking I could handle/manage working a normal job but since this flare don't see it happening especially if I am going to p.t. 2x wk. Any advise in regards to work situation dont know if I am at point yet to think/consider disability Question

I noticed this morning looks like my muscle atrophy is returning to my leg calf again. Evil or Very Mad

I luckily am still on unemployment for 2-3 months so on a tight time line. Sad

I don't know if I feel confident w/ my ortho dr since he said I should be done w/ all tx in 3-6 months that was little over month ago and now this. Will I ever be completely done w/ tx Question

Since I am at the 5 month marker or is there still a chance for me to get to a point where I will be completely done Question

Thanks everyone for your help so frusterated again w/ this. Evil or Very Mad

_________________
Tiffany Smile

"Our greatest glory is not in never falling but in rising every time we fall."
~Confucius

Posted: Wed Jul 14, 2010 11:17 pm Post subject:

tiffany~
hi there....ok so let's see...i'll try to help one questions [thought] at a time Razz

1. yes you should be seeing a neuro....if only to the tests that a neuro can do...for instance a 'nerve conductivity test' [which i won't lie...sucks but can be used to verify the RSD <and more on that later>]

2. work....well first, try not to stress....like you said you still have some unemployment...i'm not sayin don't look for work...i'm saying try not to stress as stress will make your pain worse :s

i don't know statistics [they are hard to come by w/RSD...] but from the people i know of who have RSD, i'd say 2/3 can NOT work....and the 1/3 that can, either barely can or only can do it part time.

3. now you mentioned disability....first, i forget what state you are in, but here in WA we have a state ran disability program. sort of like a mini version of SSD. now i KNOW not every state has them, but it'd be worth finding out of your's does....maybe call rual resources or DSHS? or a social security lawyer? they could tell ya.

5 months is NOT long enuf time to file for SSD [Social Security Disability] BUT it's never too soon to start to prepare....to aid that, get as MANY dr's reports as possible [BUT, this is VERY important, do NOT tell the dr that you are starting the process....it can introduce a bias and can nullify the findings from that dr]

the more reports, and the more types of reports, coupled with evidence that you have done as many treatment options available to you....will help!

the DAY you get to 1 year, then file.....and expect to be denied....then appeal....it took me 5 appeals and like a good few years but i was finally approved! others can echo that same story.

4. as to the chances of having the RSD reversed....well that's hit or miss. many people say after the 5-6 month period, the chances plumet....but even before that....the chances seem slim.

i hope my honesty hasn't upset you....i'd rather be honest and try to help then to lie and give ya false hope :s
~j
_________________
live life less seriously/make it count ~j~

Posted: Thu Jul 15, 2010 8:30 am Post subject: New to RSD

Jason not thank you for being honest. I really needed someone's perspective that has gone through this and has had this for while. Very Happy

I am going to take the advice I was given and recommend that my ortho refers me to see a neuro dr. Even my husband was like a dr. can't just throw a number out there like 3-6 months and expect it to be gone. He actually said if he wasn't able to do more for me and it got worse he would refer me to neuro dr. Wink

I woke up this afternoon with horrible pain shooting up my lower leg and had a lot of swelling from my p.t. I did yesterday in my lower leg. So, it seems like it has spread into my lower leg. Evil or Very Mad

After taking my nerve meds at night at least the swelling is gone when I get up. Very Happy

Just the pain is still there. This stupid condition is awful I was so hopeful a month ago when the tx was making me think I had a chance to be able to work and get to somewhat of a normal life. Then "BAM" it was back again w/ avengence. Evil or Very Mad

I am happy to report I have full range of motion back in my ankle/foot. Very Happy

I also took your advice and purchased a pair of skater shoes and put in insert it has made such a difference. Very Happy

My p.t. is going to see if my ortho will approve having orthod made for me since I walk different now on my foot to give me some extra relief. Very Happy

Thanks again everyone don't know what I would do w/o you guys. Razz

_________________
Tiffany Smile

"Our greatest glory is not in never falling but in rising every time we fall."
~Confucius

Posted: Thu Jul 15, 2010 4:12 pm Post subject:

Hey Tiffany,

With proper treatment it's possible you'll be able to get back to work. Like everyone said get referrals to both a nuero and pain clinic. Together with your primary care and ortho they have a good chance of finding the right mix of treatments to at least slow the progression of the RSD.

I've gone to school full time/worked part time, or just worked full time, or overtime since I got RSD because I was lucky enough to find treatments that worked for me. It is possible.

Good luck and keep updating us.
_________________
Kelli
http://kellirsd.blogspot.com/

uber member Joined: 26 Sep 2008 Posts: 355 Location: Texas

Ditto on what Kelli and Jason said!! I was full-time Army when I got RSD, plus I worked part-time at my civilian job. Even after I was released from the Army, I went back to my civilian job full-time and still did my one or two weekends a month with the Army Reserves. In the Army, every 6 months, you have to do push-ups, sit-ups and a two-mile run. I couldn't run anymore, so they let me do a 2-1/2 mile walk. I completed my walks in about 33 minutes. That's really good time considering my foot/ankle hurt all the time. That was in 2004 when I got RSD, I retired from the Reserves July 2009.

Don't lose hope!!

Linda
_________________
Nothing to it, but to do it!!

Posted: Mon Jul 19, 2010 10:51 pm Post subject:

hey all~
yippee tiffany...skater shoes Razz

now we just gotta get u this really slick new skateboard lol jk. im so glad they helped....an good idea re the ortho shoes....thats one i never thought of Razz

and yes....don't loose hope....some can work....some cant....some dont want to....some want to....some loose their train of thought....[and the peanut gallery says? lol]

keep us up to date on what the ortho says?
~j
_________________
live life less seriously/make it count ~j~

Posted: Mon Aug 02, 2010 7:45 pm Post subject: new to rsd

Hey Jason well my ortho dr. approved me getting ortho for my shoes I just got them last thursday so haven't had them long enough to notice a difference yet. However, they are still taking some getting used to. I noticed today that I haven't had any swelling in my lower leg but I also haven't been on my feet or sitting most of the day as i normally do. I do however have a Question

I noticed that recently I have been having some issues with short term memory. Is that something that is common or could that be a result of my nerve meds I am taking Question

I have my follow up visit with my ortho dr. tomorrow I was going to ask him to refer to me to neuro dr. I just passed the 5 month marker w/ this. I am working with a short time frame and need some advice. I basically only have 3 months of treatment and visits left before I need something to go to my attorney with which would put me having this at 8 month window. So, based on 8 months of the condition should I have some grasp of things like am I looking on obvious ongoing and continual tx, rx, etc how "X" amount of time Question

Or is everyone different and it's to hard to say how or where I will be in my treatment at that point Question

Just trying to get the consensus of what point everyone knew around in their condition that it would become on going and continue. Thanks everyone I will continue to keep you posted. Hope everyone is enjoying their summer.
_________________
Tiffany Smile

"Our greatest glory is not in never falling but in rising every time we fall."
~Confucius