Hey, everyone! This is the same Jennybean from John Lester's BTC. I'm so glad to have found this new site, you have no idea!

Anyway! I was diagnosed with RSD almost a year ago and it has been one hardship after another. I even lost my job and am unable to work because of this, but cannot get any SS assistance. The doctors around my area don't know enough about RSD to know how to recognize, treat, or deal with patients of RSD. Thus, I cannot apply for disability. Since it is my right foot/leg that is affected, my mobility options are strictly limited to relying on others to transport me to the seemingly endless doctors' appointments. I feel like such an inconvenience! And then when I see the doctors they just look at me as if I'm crazy, like there's no way I could be in such pain from such a minor accident. Since my diagnosis I've had at least eight pain block surgeries that were no fun at all and didn't make a difference. I've been stuck, poked, scanned, and X-rayed to the point of feeling like a radioactive pin cushion! However, none of these tests have proven the existence of RSD yet my diagnosis has remained the same. Physical therapy turned me away, saying I was in too much pain for the therapy to do any good. One doctor even referred me to a psychiatrist...I truely believe he thinks I'm either crazy or just making it all up. In the mean time, I'm sinking into depression and beginning to wonder if maybe I am crazy. Or maybe it's just the pain that has driven me to insanity! Friends have suggested that I try going to Vanderbilt to see some of the best neurologists, but I don't see that as an option because 1.) it's so far away, 2.) my mom would have to take off a lot of work to drive me and we can't afford that, and 3.) my COBRA insurance is running out.

Maybe I'm just throwing myself a pity-party, but it does help to vent out these feelings. Anyway, thanks for listening. If you have any comments or advice, feel free to share.

Jennifer

I think we all can relate to the way doctors have treated us in the past for RSD/CRPS. Some don't even believe it exists. They are the narrow minded ones still stuck in the dark ages. Too bad Debbie (GiggleBabe) wasn't on here. She is from Tennessee and she was able to get SSDI. She might be able to provide you with information. One thing I do know for certain. Every state has legal assistance for people who are trying to get SSDI for RSD/CRPS. You will definitely get it rewarded to you if you get legal assistance. They costs very little and in some cases they do it probono. If the attorney feels that the doctor or doctors you are going to are not helping you than they will send you to the right ones. I have already been through this in Massachusetts. It went real smooth. Give it a try. They should be in the yellow pages under disability. Chin Up and best of luck

Mark

Hi Jennybean,

You made it here! So good to meet you.

Yes, I quite agree with Mark on several counts, I too wish Gigglebabe was here she certainly would know what's what in Tennessee. You could try googling for "Braintalk RSD Gigglebabe" and click on the cached link - see if her past posts come up, worth a try.

But I know exactly what you mean about the diagnosis problem - and I'm in Hong Kong. Friend of mine in the UK, same thing - seems it's a worldwide problem.

My RSD started when I broke my arm/wrist, in the cast; everyone was laughing at me saying "does it itch?" and all I could say was "No, it's screamingly painful". I rapidly became aware that what I was going through wasn't normal and started looking stuff up on the net (as we all have to do, I think).

I remember when I saw the RSD pages, thinking "O my God, what a simply dreadful thing to have, I do hope..." but soon came to the conclusion that it could hardly be anything else.

I told the doc, who looked at me with growing understanding - he had at least heard of it - and then started the tests. Lo and behold I was right, dammit.

How did your RSD start? Please vent away, we all need to. Watch out for Buckwheat's posts (Roz) she always comes up with really interesting links, always worth reading.

Take care, all the best

Hey Jennifer,

I can totally sympathize with you. I was only a few years older than you when I stumbled into a curb on a charity walk, stubbing my big toe VERY hard...and winding up putting a hole in the cartilage where it attaches to the ball of my foot. Thing is, no one knew that is what the problem was (one of the problems anyway) for...well...months. I knew I hadn't broken anything (I have never been what you would call a "Graceful" Person..I mean..I stumbled over a CURB for goodness sakes! LOLOL), because I had had many broken bones before...but I knew that SOMETHING was horribly wrong. The docs did their litany of x-rays and what not to come to the same conclusion, and then put me in a series of orthotics, because they figured that it was my extraordinarily flat feet that was causing the pain, redness, and swelling around the ball and up and down the inside of my foot and big toe. Never mind that I have had these huge big extraordinarily flat feet my entire life, and stumbled and tripped over many things, and never had this happen before without a reason. No...the curb didn't have anything to do with the pain...Sheesh.

Anyway, to make a long story somewhat shorter, I wound up having a total of 4 surgeries done on my foot, all in the area of the First Metatarsal Phlangeal (sp?) Joint, which you should be pretty familiar with? LOLOL. Wound up having it fused together...and then having a nerve (forget the name of it..think it started with an "H", as if it matters anymore, *sigh) severed. That is something that I most certainly DO NOT recommend having done no matter WHAT any doc tells you, or what they do to convince you otherwise. It only made things about a zillion times worse in my case.

I am having some troubles understanding exactly what the problem is up there in TN? (I am down in AL, BTW..."Howdy Neighbor!" LOL) First of all...one thing that is really standing out in your post to me is that there isn't any test that will prove RSD. Pretty much there are tests that exclude other things...but don't dx RSD. It is a clinical Dx, which basically means that it is one that is made by a knowledgeable doc who sees the symptoms and confirms or gives the dx that way. But, then I read that you say that there are no knowledgeable docs up there...Hmmmm. Ok...that could be a problem.....LOL

What kind of "Blocks" have you had done? I ask, because if your docs don't know their heads from their elbows, then they might be giving you the wrong kind, then telling you that they are supposed to work, and then acting all surprised or upset or even MAD at you (or, rather, looking at you like you are crazy or a hypochondriac muttering the dreaded words we all hear at some point or another, "it's all in her head", when you KNOW it is good GD well NOT! GRRRRRR) when the blocks don't work. So...tell me/us what kind they "said" they did, how they did them, if you were sedated then how much you remember or what they told you before or afterwards about what they did, where the procedure site(s) was(were), and ANYTHING and EVERYTHING that you felt afterwards. Like, did you get ANY relief at all, even if it was only for an hour or two? Or, did you have a pain increase, and if so, for how long? Did your limb/foot change colors (like get nice and pink again..or not), and get warm (or not) afterwards? If so, for how long? ANYTHING that you can think of.

As far as SSD goes...You should qualify if you are unable to work, and haven't worked for ...dang...I forget how long...and if you are not going to be able to work for the forseeable future. A lawyer will be able to tell you that stuff better than I can remember it. RSD IS a quailifying disease/aliment/whatever you call it, for SSD. There are other things that might qualify you too. When I first won my SSD, I wound up winning it for "Depression" and "Chronic Lower Back Pain". Depression is a BIG THING. So, if you are suffering from Depression, and can't get a proper RSD Dx, you might be able to run with that Dx for now. When I got y Recertified for my SSD, It was for RSD, and Depression (I am Chronically and Clinically Depressed, and have been ever since RSD came to live with me....but that doesn't mean that I walk around all "Gloom and Doom" all the time, so don't get scared or any thing)..and not sure about the Lower Back stuff. Could care less about it after that exam, really.

So, I guess that basically what I am saying here, is that I totally agree with Mark (ATallOne, who is a super nice guy, and well worth listening too) and think that you should really, really get a hold of an attorney to see if they will take your case. He is right on the money about how they work. They will take your case if they think that you win....you will loose no money by talking with one...no matter how many you talk with. They will not charge you if they take your case and loose. They take your case, and they have a set amount that they are allowed to charge you by law, it is either a dollar amount, or a % of your lump sum from SSD, depending on which is the lesser. When you call to talk to one, they should go over all of this with you, and you can find out what all of that info is now....as I rally can't remember. I won my case back in 1998. Dang...it really doesn't seem like it was that long ago in some ways...but then in others it seems like longer ago than that! Sheesh.

I think that I am going to end this here, because it is after 12:30 am here, and I have to get up and drive my daughter to her classes at the community college in the morning. Her car is having some problems (like not having ANY Transmission fluid in it! EURGH! She KNOWS better than that!!! *Sigh), so that means that I have to get out of here by 6:45 and fight yucky traffic on the way back home. Fun fun. Plus, I am probably babbling on....and I am not sure if I have helped answer the things that you needed answered? I also have to watch out, because if you haven't noticed yet...I am NOTORIOUS for writing horribly LOOOOOONG posts, and if I don't stop myself, I am like the Engergizer Bunny...and I keep going, and going, and going, and going, and going....and you get the idea. ROFL

Let me know about those blocks, OK? If you have more questions...give a holler. If I caused you to have more questions...give a bigger holler! LOL.

Ok..really am stopping now. Hope you have a good night...

((hugs))
Jose

(Please excuse typos and whatnot..not proofing or spell checking, as I am heading off to bed right now. So sorry in advance for any unreadable gibber gabber.)

I guess we are in the same boat? In January I lost at the hearing stage of the game in my hunt for SSDI/SSI, so now my case is being reviewed by the AC. My attorney fired me because we lost, she said she only takes winning cases . She didnt even try to put up a fight at all, it was just me and the judge the whole time, and he was tough.

I have a new attorney now, and he has a very good reputation. Took me a couple weeks to find him, even though there was a few attornies that would have taken me on I want to win. I have a hard time believing that I havent yet, but I know in the next couple of months things can and will change.

One thing we can always count on is change, nothing ever remains the same. Only this time it is going in my favor

I wish you the best, and a short easy win with the SSDI/SSI
Allen

Hi Jennybean,
I know what you mean about the doctors, esp the worker's comp docs.

I have been to 9 docs who have diagnosed me with RSD, but the 2 WC docs
don't know anything about RSD said no - but of course they lied.
Said there were no color changes or swelling when there was and after the
doctor appt we took pictures to show it - they are dated too.

I depend on others to transport me too, for 2 years now. I'm lucky to have good friends, but I don't want to take advantage of them.

I'd like to see a light at the end of this tunnel as I'm sure we all would.

Jose, You went through some pretty rough stuff. I must have joined BT1
when you'd already told that story.

This ? is hidden in this post so I am not sure anyone will see it or not:
I was wondering if anyone else has huge problems gettng up in the morning.
I get 2-3 calls from family and friends and it is 11 AM and I am still in bed.
I get up in so much pain, I'm so slow, it takes me until noon or 1 PM to get dressed and take meds -- then have breakfast...which is pretty painful to do, so I put if off as long as possible.

ARTIST -]I don't see how you can go on using the rSD hand/arm so much.
It must be torture to use it all day everyday.

Also, congrats to Kate for her new little one. I saw the pics and she is just so precious and adorable. Love the hair.

Allan I am sorry to hear about the spread and I hope they give you blocks asap. God won't give you more than you can handle.

Take care,
Hope

Gosh I can't remember who it was but on the old forum there was a link on how to win your social security benefits. I followed everything that was mentioned on that link and won my first appeal with no problems. If I can find the link or remember who posted the link I will let you know. Jewells

Jewells - you made it, great news...got anyone's email addies? Trying to spread the word. So good that you're here, this is really beginning to feel like home...sigh....

HopeLivesHere, your post -
"ARTIST -]I don't see how you can go on using the rSD hand/arm so much.
It must be torture to use it all day everyday."

The RSD is in my left hand/wrist; I'm right-handed, so all the work is done by the right hand and the left just assists now and then - but the rsd has actually lessened somewhat over this year, and apart from the first 6 months has never been as bad as many people's on the forum.

Up till 6 months ago never had a problem in the right hand bar a painfully deformed little finger, from arthritis. But I'm now getting a problem with it caused by, take your pick: spine doctor say spinal stenosis, ortho says maybe RSD spread, I say feels like general peripheral neuropathy with a lot of repetitive something syndrome. Normally it's OK, but whenever I use it for too long (and the time is shortening fast) it becomes horribly painful. Yet a night's sleep sets it back to OK, whereas the RSD arm never gives up.

It's a puzzle. Anyway, the job I've just finished is unusual, I don't normally need to spend anywhere near that amount of time on anything. It WAS torture! I don't have any choice, BTW, live alone (well OK, with dog) got no dosh so gotta work. C'est la vie. Hey, this is incredibly rude of me, but I simply can't remember anyone on BT1 called Hope....either you've changed your name or I've been taking too much neurontin (very likely!). You're right, though, no I wasn't posting much - had a stomach ulcer problem, and while all the tests were being done for the spine issues, I needed to kind of step back. Suddenly the future seemed very dangerous, because the stenosis will, I think, eventually close me down.

But not yet! Oh no, baby....also, something seemed to have gone out of the other forum - not just me, but many of the diehards posted seldom...dunno, seemed to have lost it's sparkle.

Whereas *this* place, whole different story .

Time for the dog to take me for a walk,
take care, all the best

I've had RSD since 12/99 (upper extremity) and been a member of BT that long. Great advice my friends...hearing your stories again...makes me tear up. It's been a long time since I've heard your stories...and since I've known you all for years and years...and consider you all my family....it makes me very, very sad.

I just don't feel up to writing my RSD story at this time, I'll just put add a few tids bits of info that come to my mind.

We love Pity-Parties! I bring grass-skirts... You can bring the chips!

You are NOT crazy. Pain is pain. Pain way out of proportion to the injury could very well be RSD. End of story.

Seeing a psychologist or a psychiatrist is a good thing. So do not take offense to this. Speaking to a "good" doctor will help you, in my opinion. It will be a very good tool in the long run...especially for a SS case as was mentioned here by Jose. This doctor will confirm that you are not wacko! And that your head is turned on straight. That you are not malingering pain. That you want to get on with your life. That you want to work IF you were not in pain and you were physically able to work.

With regards to blocks & PT. What was done w/ me when I was 1st diagnosed, was that I went in for a block and immediately following the block that is when PT was done. Therefore I was numb. I still called it my torture chamber, but it was less painful. I've had more blocks then I could count.

And another thing is blocks were done every week without missing a beat. Even to this day...when I go in, there done in a series. 3-6 in a row...until my pain decreases.

I was in PT for over 4 years, I believe. This is a long haul.

No Physical Therapist should turn you away because your in pain. Hello? Thats there job. Desensitizing you...is there 1st job!

While you are waiting...do some of this on your own. Start with a feather! Just lightly touching the area.

Heat. Baths w/ Epsom Salt...really is very soothing.

You must keep fighting the dragon!

Good luck...keep in touch.

You take care now...

but getting doctors to recognize RSD at all is an education in itself. Many times I've been to the docs and tell them about my RSD. They've said: I have never heard of RSD, and so they have had a new medical info session. Then, they bill me.
There was one doctor who read up on what rsd is and how it affects its victims. He read about the meds and is learning still.
After all is said and done he helped me a lot.

I'm not sure if that helps any.
Have a great day,