NeuroTalk Support Groups - Am I the only one??? Oh my!!, Doctors!

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Am I the only one??? Oh my!!, Doctors! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/12245-am-oh-doctors.html)

Quote:

Originally Posted by misreable (Post 65367)

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

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."

Quote:

Originally Posted by LisaM (Post 65751)

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:

Quote:

Originally Posted by KateLynne (Post 64681)

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:

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