How Do You Feel When People Tell You There Isn't Pain
 

Hello Again! I am fairly new at this still so bear with me. I have had RSD/CRPS for over 15 years now. I have tried many different methods and so many different medications. Some have helped in some RSD areas. I went to a new physical therapist the other day and he really upset me. For me one of the hardest things about RSD is the fact that it's still one of those ailments that the world doesn't know a lot about yet. So one of the first things the PT said to me was that my body isn't in pain. It's just the nerves sending a wrong signal. Now I have been in agonizing pain for over 15 years. I do not need him telling me that I have mixed up nerves! I know the nerves are sending the wrong signal. I do. But to tell me I wasn't in real pain. That is what **** me off! I'm sure a lot of you have had trouble with doctors. Trying to make them see that you do have real pain problems. So, I guess I was just looking for a place to *****! Anybody else is free to *****. Thanx for reading this.:Soapbox:

:Thanx:

Kellie:Viking:

Oh, I've heard this so many times with doctors in their dealings with my wife who has RSD. I've known her for 30 years so, I've learned real quick that when she says she's in a lot of pain I believe her 100%. But many family members don't and one in particular stated the same thing to my wife about the wrong signal mombo jumbo. I proceeded to explain what those wrong signals can produce, such as swollen, discolored limbs, changes in temperature and disfigured finger and toenails, hair falling out and absolute agonizing pain.

I would printout some good info on RSD with pictures for this person to read and see, and if they don't get it after that, split........................

Hi Jimking,
Good idea for printing out some pictures. RSDSA has the McGill Pain Index RSD rates at 42 on scale of 50 It shows its above amputation and terminal cancer, childbirth, Any woman who has beared children should be able to recall those memories.

Hi AJSG and Welcome, I'm sorry you have this disorder. None of us had a clue what would be coming our way. That's probably good. We learned soon enough. I'm grateful after almost 14 years -full body now that I'm still mobile. I have my left hand crippled.
I have a wonderful Dr. the last 5 years. He's turned my life around this past month.
He just finished a study of 200 patients with seroquel. It's was made for bi-polar, which I don't have and schizo., which I don't have either. But he tested this drug on a low dose for fibromyalgia patients, which I have also and the outcome for me and large percentage was sleep. I hadn't slept until 5-6 in the a.m. for weeks, and was going under. I went of Ambien Cr. and switched to seroquel. I sleep a sound restorative sleep and this in turn has let me reduce two meds. Vicodin went from 6 pills a day to 3-4, mostly 3. Lorazepam went from 6mg to 2-3 mg a day. This anxiety med is wonderful as when we are relaxed, our sympathetic system calms down, thus our pain level calms down. This Dr. manages my RSD, Pain, etc. He is a neurologist, psychiatrist, pharmacologist. Teaches, just built two clinics. Put HBOT in both of them. I can't wait to try the HBOT
He said he is getting great results. Insurance doesn't pay for HBOT for RSD. It is very expensive.
I'm glad you found us. We are here for each other. Take care, loretta

I hope that your new PT measured the body part that you are working on...my issue is my right knee. After 2 months of PT, I through down the gauntlet and said, "NO MORE, You ARE KILLING ME. I can't bend my leg as I could when I started 2 months ago..it is swollen!" The PT said that we would measure and see if I was getting better, that my pain was not as bad as I claimed, WC wants results, and I needed to tough it out..I said,"Let's DO!" My knee and front quad was 2~1/2"
BIGGER!

The PT was speechless, and said, "The leg is swollen..you are getting worse, not better." The PT told me that she was going to talk with the surgeon, apparently he wanted further PT, push it to the limit. Well....

The next time the PT wanted me to do leg presses on the Total Gym, at an extreme slant where my body weight would be in play... I had a panic attack;it lasted 3 hrs. My body refused to be placed on the torture device. I was DONE with that PT.

Shortly,thereafter, I started seeing a psychologist for CRPS,Major Depression, Anxiety/Panic Disorder.

Your body will rebel even if you don't want to quit the painful PT.
I wish you the best.
:hug:
Dew

I would have ask him if he has ever had RSD if not shut the #### up lmao:grouphug:Shey had RSD for 10 yrs now

This is the reason for SLOW pt, GENTLE pt. Aggressive pt that pushes things to the limit is NOT right for us rsd'ers!! *rolls eyes* Even gentle and slow can make things worse. It did for me. I think it was partly because the rsd was moving so fast and it just helped it spread. My body hates change anyway and often rebels in the worst of ways. LOLOL

Hugs, :hug:

Karen

I have not had good experiences with PT. I won't allow anyone to touch me even doctors on my rsd areas. Most who deal with rsd on a regular basis have been ok with that. Anyhow what I felt in PT at Cleveland was they will push you as far as you will go even if it is not right for your body. I am not saying all PT are like this but when I was in there program the pt lady yelled at me cause I said no. Then later the other team members felt it was too much and I already was pushing beyond what my body could handle. I was so thankful I said no. The issue I saw at CC though was some people could do pt activities but chose not to for one reason or another and that is where I think there is confusion for pt people.
A side note since I have seen so many doctors and specialists of course I have got a range of stupid comments. I even asked one pain doc what happened if the procedure he wanted to do made me worse and he was like we will send you to mental therapy. So that made me know he was not for me. I agree and am thankful I went back to psych but it does not take away my pain flare ups. I then had to go onto my next doctor. My current one listens and works and I try to focus on people that do and the ones who don't are clueless. Sometimes I vent and cry from the clueless and then I try to move forward my mom motivates me to. That brings up family of course as well. I have many who are just plain mean about my condition but I have my mom and she is my hope and strength so I try to focus on her. Ok enough of my novel.

AJSG: Welcome to this loving and caring group here! We all all or have been in the same boat as you are in right now. By Dr's not understanding RSD we all go around in circles. Just trying to make them feel our pain! If they would only listen to us in the early stagy's of RSD we would all be better off! Thats what did happen to me. It took all of the Dr's from the time of my surgery to the time they finally dx it almost three years! By that time I had full blown RSD! Also it was to late to go back and sue the DR who did the surgery.Then comes the P.T Oh my well you know what the others said about that subject! They were coming into my apt. every day for two-three hours,talk about pain! I haid to learn how to walk again also how to even open up both of my hands. Well enough about me for now. I am so glad that we are all here to help you as best as we can! I've learned that my happiness has to come from within. All The Best To You! Breezy55 :circlelove:

daniella - it's interesting the different experience we had at Clev. clinic PT. I went to the outpatient Occupational therapy. It was by far the best OT I have had, and I have been to quite a few places. Clev. Clinic was where they taught me to STOP as soon as it hurt worse. To stretch just to the point of hurt, and back off. NOT to push it. They didn't have me coming very often, because progress is slow. They showed me a few exercises, and I went back once every two weeks to be checked and new things added. After a few sessions - perhaps 6 or 7, the woman I was working with said I had learned the exercises, just keep doing them, and I could come back once a year for progress/update. They also worked with me on what things were difficult for me to do in daily life - new ways to do them, or make them easier. Also places to work in exercises into daily life, such as sitting at my desk at work, or in the car driving or even pushing a shopping cart.

Since then, I have gone to a really good physiatrist at Ohio State. My Insurance changed, and I was no longer covered going to Dr. Dews at Clev. Clinic - so I sought out someone closer to home. I really like the physiatrist, although he is great with movement, I think Dr. Dews, who is a pain management doc working at a satallite office of the Clev. Clinic in one of the suburbs, knows RSD better. Well, anyway, the OSU doc sent me to Occupational Therapy at OSU. I was really scheptical (sp?). It turned out that they went by pretty much the same protocol. They taught me new ways to use my TENS unit, and some additional exercises for my hand, which was not affected when I was going to Cleveland. This was at the main OSU therapy dept.

It may depend on what your doctor orders for you, or what therapist you get... or what program your in. I think the intensive, every day program that is 2 weeks or a month is very hard compared to what Dr. Dews ordered for me.

I found that the other physical and occupational therapists I went to at other places that pushed me so hard - one place so hard I was in so much pain I threw up during a session and almost blacked out - definitely made my RSD much worse, and I think caused it to spread.

The "gentle" way I learned at Cleveland Clinic and OSU has not made me worse, but has increased my flexibility - although I have not regained complete use of my arm/shoulder, and they do not think I ever will.

How do I feel? Annoyed.
 

When I was first being treated for my sprained knee, misdiagnosed of course, I was sent off to PT to fix the ol' leg. Same as many here, I was told to work through the pain, 'it can't hurt that bad' (an actual quote). I told the PT therapist that it was making the pain worse, not just that day, but the next, and that the pain level was increasing gradually, and all I got was an incredulous look, and was generally accused of lying. 'You need to get off the pain killers, they aren't needed'.(another actual quote) Well, goody. I am so pleased you can read my mind. Eventually, seeing apparent bruising, swelling and me nearly screaming from the treatment, they informed me it wasn't working, must be something else wrong. Wow. Really??? Two years later, after a doctor who knew I wasn't lying but had no clue what was wrong sent me to a specialist, I was properly diagnosed. Moral of the story? It's your body, if you are in too much pain to deal, the heck with them, don't do it. No pain no gain is NOT something you should ever hear in PT. Slow and easy, gotta use it or lose it, but killing yourself to live is not the way to beat this sucker. Shame so many folks in the physical therapy field have gotten burned by scam artists aiming for drugs that people in real pain pay the penalty.

When I'm really tweaked at stupid people, I meditate...Ommm...Ommm...Ommm...gonna strangle these twits...Ommm...gonna break their legs...Ommm...gonna teach them what pain is all about...lol, j/k...

I am supposed to make an appointment for pt this week. Doc thinks I need it for my hip that is losing bone density. Last time I went they couldnt get me to improve...go figure lol.

Was workin my ankle, and he told me that I was stopping at the same rep count everytime on purpose. So he had someone come in and talk to me so I couldnt count with him. He did that for 3 days, then told me there was no way he could help me because I was still stopping at the same rep, meaning there was no improvement, and I was complaining that it was hurting too much to continue lol.

I am a firm believer in use it or lose it, But use it, but dont hurt it. You know where that line is.

The key to everything is moderation :winky:

My RSD likely started with aggressive, painful PT
 

It's likely that one of the reasons I have RSD is that after a 2nd rotator cuff surgery (after which the surgeon placed a 3 day continuous catheter of anethesia directly into my incision), I was put into a really aggressive 3 day a week PT program at the surgeon's own facility. It was absolute torture, and I still can't believe that I didn't call it quits sooner and let those people hurt me so badly. The woman PT who was in charge of my care never seemed to believe me when I told her she was hurting me, or that I couldn't complete the number of reps that she wanted me to. By the time I was referred to a PM doc, about 2 months or so after my surgery, I could barely move my arm. What really stinks is that I saw copies of my PT records and my symptoms that they wrote down were classic RSD - burning, stabbing, poking, feels like she's on fire, etc.

Months later, when my RSD had been diagnosed and had spread into my neck and head due to trigger point injections done by the PM doc, I wrote a letter to the therapists that had hurt me so badly and told them about my RSD. I gave them the link to the RSDSA website, and told them that all of my symptoms had been classic RSD. Hopefully my letter might save someone else from having the same thing happen to them.

I swear they thought I was a drug seeker and a malingerer. When it was time for me to go back to work at 6 weeks post op I had lost over 20 pounds and was a mess. The doc wrote me another script for more percocet and put me out of work for another few weeks. My PT was totally disgusted. I should have walked out on the spot. I still can't understand why I didn't.

RSD has made me a much stronger person. I stick up for myself much better and more quickly now than I used to. I've made sure to go back and let the people know who hurt me what happened. I now have a great PT, and I am trying to build a good team of doctors. I plan to go after, in whatever legal fashion that is available, the people that hurt me.

Too bad that it's too late to fix me, though.

Sandy

Doctors are morons. PT are worse, doctor wannabes. Most have not seen an RSD patient even when it bit them in the butt. I saw two in 20 years that I recognized; well after the fact unfortunately! Very humbling...karma now, I guess.

I tell all my docs (and PT who is actually great) you can't know what RSD pain is like until you've lived it. They just look at me with their mouth half open. Can't understand from reading about it in a book, can't feel it by looking at it; just can't really know jack #$&! about it until you've been there, done that!

I have really good drs. They belive me. My problem is family. They think iam putting on some kind od show. They don't think i should take pain meds and tell me to just deal with it. That alone is painful. Sometimes i wish they could just feel it for an hour or two. I don't think they could "" just dea with it "".

Sue k.

The key to everything is moderation
 

Amen. That's the advice my grandmother always gave me.

karma
 

Just hope for their sakes that they don't have the opportunity to understand the pain. Karma is a b****. They best watch out, she'll get 'em.

Most docs are morons
 

Thankfully, I have found one who isn't a moron, and tell ya the truth, I've seldom met someone who is so compassionate. I was in this week, and was telling him about what was going on in my life, which is pretty screwed up. Sorta have two women living here, a 15 month old baby boy and my lady is preggers with another, 5 months along. I got permanently laid off of the best job I've ever had, wrecked my car right before I got to the doc, and the pain is spreading down my leg into my foot. I cheerfully said, "here, check it out, run your hand down my leg, warm, warm, warm, cold as the dead there, see? Pretty neat, huh?" He pulled himself closer to the table, kinda rested himself on it, looking very tired, and I told him, "man, you look tired as hell." He told me he wasn't tired, just noted "you're going through so much right now, must be really hard." He looked as if I had backhanded him, really blew my mind. Whatta guy, I can't say enough good about him, frankly. After years of twits, with one exception besides him, I was shocked. He has compassion, really messed with me. I ended up feeling bad for him, for he is carrying my pain with him, and that's something to behold. May y'all find as good a doc as I have, makes all the difference in the world.

Yeah...
 

I could see that being the truth. They could cut all day and it ain't gonna make a bit of good outcome, in all likelyhood. I've noticed that after all their training is done, more than a few new doctors come out looking at humans as test subjects or something. "Here, try this. You have any weird or bad effects, be sure to write them down...and let me know..." I find this attitude contradictory to the Hippocratic oath frankly, and wish that they all had more concern for their patients than anything else. People's lives are on the line.