Am I the only one??? Oh my!!, Doctors!
 

Am I the only one who has really crazy problems with Doctors??? :rolleyes:

Let me explain... I have RSD in all of my extremities, and I recently went to the eye Dr. (optometrist). I went to get my eyes checked, get new glasses, and I also wanted to tell my eye Dr. that I was seeing floaters.

SO, I went and the eye appt. went well. My prescription had not changed much, but the eye Dr. said that there was an elevated and inflamed nerve in my eye!! I was alarmed and so was my PCP. Well, my eye Dr. told me that he wanted to keep an eye on things (:p lol, really! not meant as a joke), and look more into it, because as I have RSD and that is also a nerve problem.

My PCP wanted me to see an ophthalmologist since he could look more into this nerve problem in my eye. I go and he says he sees absolutely nothing wrong with it. He told me that my optometrist could not have seen that, because if he did then he would see it now (and if he did, he would even see it a year later). OKAY. Well, I told him that he should call my optometrist, because he is the one who saw this. He said that he would not call him because he would find out absolutely nothing!!!!!! I was so dumbfounded. WHAT???!!! He really thought I made this all up! Why would I make up that some other eye Dr. said there was nerve inflammation and elevation? Why would I pay to see another eye Dr. if I really made it up? Come on!! :rolleyes:

So then he goes on to check out the floaters I have reported seeing for the past few months (which, by the way, came on at the exact same time the pain got AWFUL). He looks at my eyes real well, and he says that "oh, yes the jelly has collapsed in your eye". Well, yeah- my other Dr. says so!! So, I asked him "why did the jelly collapsed?". He says "Well, it didn't.". WHAT???????????????!!!!!!!! You just said it did!

He then goes on and on about how the medications I am on or have been on (Neurontin, percocet, darvocet, lidoderm) COULD cause me to have dry eyes, to have trouble reading, or such!! WHAT? He went on the internet (he said so) and looked up all the meds. I am on to see if they would cause any such side effects. WHY, I don't know! I did not report having trouble with reading or dry eyes. I came because my optometrist said there was something wrong with the nerve in my eye. :eek: :rolleyes:

I could not get any more out of him... he said that the floaters didn't just appear when the pain got awful, I just started noticing them at that time. OK, I'm sorry, but I did NOT just start noticing them at the time my pain went through the roof. Why would I THEN take the time to notice them when I was dealing with major pain?

Whatever. I know that these floaters started then. They did not come as a side effect to the meds. I'm on... they started before I started any meds (other than motrin, tylenol, aleve)!!

BTW, the floaters did NOT start from old age either, I am young. :rolleyes:

Everyone can tell me I'm crazy, I don't know what I'm talking about, and on and on and on... I am NOT crazy, I refuse for Doctors to just excuse me, and tell me I made something up (or at least act like it).


That really isn't the worst of it. I have a Dr. who tells me that I can not look up ANY info about RSD. :eek: Yeah- this is my disorder and I cannot even learn about it? I'm the one in pain 24/7, I am the one who is living through this and I might just have to live with it for many years to come. And I cannot even KNOW anything about it?! Yeah. :rolleyes: He thinks that RSD is a psychological illness. :rolleyes: :rolleyes: :rolleyes:

Sorry to go on and on. I must not be the only one, right?!



Anyone else have eye problems due to RSD?
Why do so many Drs. think that RSD is a psychological illness?

Please somebody, help me!! :eek:

You're not the only one with a crazy doc story. I've had some of the worst docs!! Well, anyone who has been or is dealing with work comp know what I mean. Idiots every last one of them. I was accused of "faking" things. Yeah, I can turn my legs and feel dark purple with my mind. :p

I'd find another opthamologist to see and if possible another doc. How can he justify treating you for something he thinks is all in your head? *rolls eyes* I don't get it why they all think we're freaking psycho or something. I believe that doc needs to go look on the internet and learn about RSD himself. I hope you don't pay any attention to HIS psycho raving. LOLOL

The eye doc, #2, sounds like a right nut case himself. I hope there is another one who can figure out the why of your eye problem and maybe help you somehow. I don't have any eye problems, yet. The only thing that did happen was in the first year with rsd, I went to get my eyes checked and get more contacts. My left eye has always been pretty bad since I was 7 due to a piece of woodchip in my eye. Well, the vision in my left eye is now better than my right!! The right eye is just slighty better than before. I figure if that kept up I'd have perfect eyesight in no time! LOL :D Alas, the eyes aren't perfect but there's been no more changes so there goes the bright star of getting rsd in the first place.

Hugs,
Karen

Kate Lynn,

Welcome to the forum, sorry it has to be because of RSD,

You wouldn't happen to live in PA would you? Your Doctors sound like some

of the ones I have seen since moving back to PA from NV. I had a PM doc tell

me I didn't have RSD, this is after being diagnosed by numerous docs including

Dr. Stanton-Hicks of the Cleveland Clinic. She said I didn't have discoloration,

swelling, or sweating so it couldn't be RSD. However I tried to explain to her

that I did all those symptoms and more until I had the nerves burned in my

back (abalation). I also got SSD on first try and it only took 6 weeks after

being released by WC. All of you that have applied and either been accepted

or been denied know they don't just give out SSD without alot of proof of

illness or disability.

I think you need a new PM doc and possibly a new optometrist, it couldn't

hurt. I agree with the previous post in regard to proper treatment if this doc

thinks you are making up RSD, what kind of treatment could you possibly be

getting?:confused: :confused:

goodness - replace those drs that made the off the wall statements.

My eyes do act up when I have a TOS symptom flare- {my neck muscles tighten up}.
My right eye will water, my vision gets a bit blurrier{for reading}-and more floaters too!
I even used to have swallowing & speech and voice problems.
My memory and concentration was very bad at the time too.
My drs didn't know what to make of any of that- but at least they didn't tell me not to search for myself. I would have fired them for sure.

But I know for me those symptoms were due to the RSI & TOS at its worst because as I healed and recuperated those odd problems faded away too.

Hi KateLynne,
 

We could write a book from the stories that has been told on this forum about Drs. being a**es.

In 5 years I saw at least 100 Drs. before I got all of my diagnoses and the help I needed. I am not exaggerating. I have a list of all of them. I ended up with about 8 that has helped me with all of my problems.

The PM Drs. are jokes in my book. They are out there to help you but they are afraid to give you the meds you need or hand them to you just to get you out of there.

At first I cried and would want to give up and then my PCP would send me out again to another Dr. to help diagnose me. After awhile we just can't seem to take anymore of their attitudes so we tend to just slump down in the floor and cry.

The Drs. you have sound like a**es. Look for new ones and don't give up.

When a Dr. tells you not to look up your illnesses on the internet then he's trying to control how you are being taken care of and they tend to think sometimes that we go on the computer to learn about illnesses to use them to get meds or attention. He is one I would definately dump. Why should we wait for them to take care of what is going on with us when they aren't going to do it anyway. What we learn we can take to another Dr. and ask them for the help we need. When I fell and got hurt my PCP ask me to go out and buy a computer to help diagnose me. He had sent me to so many Drs. and none of them could figure out that I had TOS. I did it with the internet. He and my PA had had only one TOS case in each of their 20 years. It took us 3 years to get me diagnosed. We went through that 2 more times with other medical problems. Now I'm back on the computer trying to figure out this pelvic pain. I don't give up. Before councelling I would have crawled under the bed and died.

Don't give up, keep going to Drs. until you find the one that will help you and stick with helping you. They are out there.

I can't believe the one Dr. didn't believe in RSD. That's the first one I heard that didn't. Usually it's Fibro that they don't think exist. LOL

Do hang in there and keep looking for that right Dr.

By the way, I have eye problems also from the RSD and Fibro. They can be caused by either.

Glad you found us.

Ada

Hi Kate
This is so "scary" I have seen so many Dr's leave crying every time no
way you are alone-I also had a DR.tell me to stay off the internet,the only
time I had blured vision was when I was on Lyrica-(didn't help any way)
just about ready to give up- right now I'm cutting down on vicodin (want to get off) I can't find a place here for PT. for desensatising my whole body, ready to give up DR'S don't lesson any way they have to see some one else in 15 min. UNBELIEVEABLE
Good luck
SUSAN

Hi Kate,

I was recently diagnosed with crps 1 and have been searching for a doctor experienced with rsd. It is so frustrating. The doctor I have now looks at me like I have 10 heads when I tell him about my pain. Even though he has experience with rsd. I found a website rsd.org the phone #877-882-7737. The person I spoke to is James Broatch. I told him all my problems and he was so helpful and understanding. I gave him the area that I live and he sent me a list of doctors who work with rsd in my area. I also found a support group on the site. You just put in your state and town and it will show all the support groups in your area. I got some referrals for doctors from the woman who runs the group near my house.
Good luck. I am sorry for your troubles.
Eileen

Hmmm....let's see....I saw about 15 doctors over the course of about 5 years dealing with TOS and RSD. I KNEW there was soemthing wrong, but since the tests they were running on me all came back normal (cuz they were running the wrong tests) they said I was nuts - it was psychological. The only doctor who DID believe me was my MD...the problem was, he wasn't familiar with treating TOS/RSD. My PT believed me, also, but she wasn't curing me...and had to do PT based on what the doctor who referred me to her told her to treat me for...so she couldnt really treat me for TOS. So, I went from doctor to doctor, who then referred me to specialist after specialist...many of who tried to find "proof" that I had MS, so they'd send me for more MRI's of my brain, trying to find proof of it, cuz htey said my symptoms acted much like MS.

I was on all different types of medications, trying to see which ones worked. I was in PT for neck issues cuz they thought if they could work on my neck, my arm pain/numbness would go away. I went to a (psyiatrist?????) who would just adjust my neck and back every two weeks. He didn't believe in pain meds, though, so I was in horrid pain constantly. I called him one day when I couldn't even get out of bed, I hurt so bad and was crying my eyes out. I couldnt even get in to see him. He said if I hurt that bad, go to the ER.

Believe it or not, I even had a FELLOW TOS/RSD-er call me a "doctor shopper" (or in other words, drug seeker perhaps????) cuz I've been to so many doctors trying to get someone to diagnose me. You want to talk about feeling like crap? Try having someone who is going thru the same thing you are, telling you that you are a doctor shopper! The only reason I went to so many doctors is because I was following the DOCTORS INSTRUCTIONS! They're the ones who were sending me to specialists! Md would send me to a neuro...neuro would send me to a thoracic surgeon....thoracic surgeon would send me to a vascular surgeon...vascular surgeon back to my md cuz they couldn't help me....md would be so convinced it was TOS and not knowing who I should be treated by, he'd send me to a DIFFERENT neuro....who'd start the cycle over agan (of course, starting with more MRI's to check for MS!). And 3 rounds of PT cuz of course, every time a doctor wants to send you to PT, and you tell them you've already been, they said, "Oh, but MY therapist is the BEST!" so they make you go again. AGGGHHHH!!!!

Then the merry go round of med's. I think I've been on almost every single one you can imagine. How do you think I got to the patch! You have to go thru almost every pain med, up the ladder of them til you reach a max, until you get the patch.

Hon...you aren't alone. This is such a stupid disease, and doctors are so confused about it that many times they don't know what the heck they'r looking at. Then when someone elde finally confirms it's what you have, then they suddenly feel for you, and suddenly they know what it is and you aren't nuts anymore. But it's like they didn't wnat to be the ones to diagnose you! Ad so many weird things can happen with RSD that not many doctors can answer our qustions.

My doc told me not to reseach on the intrnet with UNRELIABLE SITES. To stick to TRUSTWORTHY ones...like those of the mayo clinic or the NIMH or whatever it is. Not to just accept things as written in stone unless it's from a reputable site. Maybe that's wht your doctor meant????

Don't worry. We know what you're going thru...so vent here. We know you aren't crazy, aren't doctr shopping, and aren't an addict either. Ad we'll believe you no matter what you say, even when others won't.

Hi LISA
Oh my I 'm going to read this two more times,what in the world are you
just saying all this-you just told my life story-have to read again 4yrs & know
one has believed me I don't even think they lesson including my own family
what state are you in? will get back to you have to read this again make sure
I'm understanding all this.
Many Thanks
SUSAN

griping
 

LisaM, you just wrote my story also of the last 12 months minus the RSD. And Jo55 I'm glad to hear about the floaters, blurred vision with the TOS flares. I have an appt with an opthamologist soon. Hopefully its not the Topamax. Katelynn thanks for starting this thread, I don't feel so alone now. Ihtos aka I HATE TOS

Hi Lisa
I guess I'm just your shadow so many of us-angry!!!!!!!!!!!!!!! there Isnt a
DR. left here for me-- called the pain clinic last WED one week later haven't heard a word !!!!! my INT.MED DR. doesn't know any thing about this don't
they here me I can't wear clothes can't stand any thing to touch me, PT. here never heard of desensitisation for my skin I live in GR. MI.this is just not
right- so D--- mad!!!!!!!!!!!!! I know you know what I'm talking about MRI
MED-DR'S- know quality left HOT-COLD who knows what I feel any more
not even my own family including my husband. Go take an anxiety pill--wont
help
Thanks for the reply
SUSAN

I'm in Michigan also. The one who diagnosed me with my RSD is my physical therapist. I think I'm lucky I had a good one. I don't recally the letters behind the name of my doctor thre, but I want to say he was a physiatrist. Perhaps, if you can get a referral there, at least you can get a consult. I found once SOMEONE wanted to "voice" that it's what I had, everyone else was suddenly on task. Its just getting someone to have the guts enough to say something that took forever.

I'm glad you can all relate. Cuz for a while there I thought I was going nucking futs. I recall with EVERY appointment, I'd go in with SUCH HOPE thtat THIS was going to be the doctor who said, "Oh yeah....I know what this is, and we'll fix you RIGHT up!"....only to leave the office bawling my eyes out. Either that, or I'd cry right after he/she said they couldn't help me...then they'd ask if I'd had any counseling in chronic pain mental health or if I was on antidepressants. LOL!

What a roller coaster ride. Seems like a lifetime ago. And even though it ended up being THIS horrible disease, it was still a load off my midn to at least know I DID have "something."

I agree! It is so scary- the more I learn about it, but I was relieved to know it is REAL and that it is not in my head! :eek:

Thanks for all of the responses. Very much appreciated. :winky: To know I am not alone really helps. I thought maybe I was the only one hearing/ going through this garbage with Doctors. I think a lot of people think I'm nuts because how could a bunch of Drs. say off the wall statements to me? SO, UNFORTUNATELY for you all too, I'm not the only one. ARGH.

There has to be SOME good Drs. out there????!!! :eek:

Thanks for the website, Eileen. I'm going to look into that some more.

I don't live in PA, Barb.

Thanks for the support, Ada and Lisa! :hug: Makes me feel better.

Karen, yeah- that makes me wonder! HOW am I making my skin change colors, temps., and all??? HOW could someone do that?

I hate how Docs think we are crazy. :mad: And, why would this be a psychological illness? Please give me some input, I'm confused.

I had a PT tell me that I should go to counselling to find out what problem I had that ***caused *** my RSD! :rolleyes: :rolleyes:

Thanks again, you all.


-Kate Lynne

Been there and livin it
 

This last doc I saw fell asleep!!!

Can you believe it! Frickin snoring too!

Then he says he dont believe in pain meds! He is a moron!
Sure he said I have a terrible disease, but I must tough it.

If I had half a brain I woulda knocked him off his stool soon as he started snorin! :D

Im still lookin for a doctor!

bump!


Here you go, Debby. :)

Yes, I have had problems with doctors too. My ortho doc is very good, but they assign me to not so good ones when he is out of town. That happened tons when he just recently went out of town. It just happened to be coincidental that he left town as everything got out of control. I was given a cream with a vasodiolater to put on my feet to help with rsd. After a few days, my feet swelled up 3 times their size and turned VERY pretty colors.... black, blue, purple, red, and all the other colors of the rainbow. We went to a diff doc since mine was out of town. She said it was just a bad rash.... I am only 15 and in 9th grade and I could tell that it was way more than a rash because rashes don't cause ur feet to swell up 3 times their size and turn purple, blue, and blackish..... It ended up being a VERY bad allergic reaction to a vasodiolater cream leading to steven johnsons syndrome (SJS).

Then the other docs mistook the SJS for cellulitis, dermatitis (or something like that) and one said nothing. Yeah, my hidden talent of making my feet magically turn purple is just nothing.... I think not.

Then one doctor couldn't get it in his head that I had RSD. He just kept on saying that he has never seen feet that looked quite as bad as mine did. That wasn't very comforting.

It was really bad when I got rushed to the ER like 5 times in one week and the docs kept on saying "Come back if it gets worse." We were just like, how much worse does it have to get. Now that ortho doc is back in town, everything is under more control. Hopefully, we won't experience all that again.

Get rid the that DR.
 

You should be seeing a Pain Mainagment Dr. If you live near a major city or University/Teaching Hospital find out if they have a Pain Management Dept.

If you give me an idea what major city you live near I could point you in the right direction.


Ann:mad:

Hi KateLynne,
If it is of any use to you, I have FLOATERS!! Big ones that just keep floatin by my field of vision, I have seen lots of different opthalmologists and they asssure me it is just a bit of "muck" in the fluid in the eyeball.
I have had CRPS for 9 years but have had floaters for about 12 years but I was way too busy to pay them much attention before. Now they give me the ***** especially when I am looking at something white ot bright.

same here. I got sent to an opthamologist - I have degeneration of the optic nerve etc which is not good... (though it took an american neurologist to spot it! the english one's hadn't because they were so certain my neuro stuff was RSD).

I have floaters and all sorts of idiotic eye stuff.. and my eyes burn.. impossible, I know, but still.

Drs are idiots.. grrr

FRxxxxxxxx