Hi Karen,
I am so sorry you have to go through a horrible PT experience and then nothing they could do at the ER. Unfortunately, I have had the same experiences as you and they stink. Most times in the ER they think us rsd patients are just "seeking drugs." I hear it from most people and have experienced it too. I agree with your doctor NOT to go back. I had PT in 2005 and they started very slowly and after a few weeks tried to get me to do some things that were too much for me to do and I almost passed out doing the exercise! After that...they did not push me as they did not want me to pass out and hurt myself. After 6 weeks of PT, I got worse with each week, and by the 7th week was curled up in a fetal position in agony and my kidneys were shutting down. It was a mess and when I called them to tell them I could not even get out of bed they didn't believe me and told me to "Take a picture of myself in bed so I could show WC." I could not believe it. I told them to come over to my house and they could see it firsthand. I spent the next month in the hospital four times with uncontrollable pain. I found out later that when you have PT at places (I know PA is like this) that you must have a licensed doctor there at all times. They had no one there like that...only a PT that had been doing it for 20 years. It was a bad experience. I did get PT at my home and that person was great with me and never forced me to go on as he knew my pain. There is a fine line between what you can do and what you want to do and you cannot go past it or else your body will go crazy with pain.

Stick with what your doc says. She sounds like she is on your side and will make sure you get the right treatment. I hope you are feeling much better soon. Just not having to go back to that place will put your mind at ease a bit for sure.
Take care,
kathy d

Just thought I would give you all a quick update. Last night was still a struggle. Pain meds helped take some of the edge off...but I found out the hard way if I don't take the next dosage right away the pain comes back even worse. It was around 4 am I found this out. I had slept through the time I was suppose to take another pain med. and I woke up to the stabbing pain in my head/back/arm again. I tried to get out of bed but unfortunately that didn't go so well. I ended up throwing up all over the floor of my bedroom. Thank goodness I have a supportive husband. He took over and took care of me.

I honestly feel like I am going to have an emotional break down soon. My mood is so low and I feel so guilty for having to ask my husband, mom and friends and family to do so much for me for so long now. My 2 year old was beside herself yesterday watching me go through everything. Today my mom is going to take her to daycare so she doesn't have to witness as much.

Do any of you talk to anyone like a Psyc doc or therapist regarding your pain and what you go through? I really am thinking I should start...before this break down I am feeling really does happen. All I know is because of the lack of sleep I have had, the pain levels and my independence being taken away I am really starting to feel the toll of it all and wondering if depression is not setting in.

Thanks again everyone for your responses and support.

Take care,
Karen

Karen,

Depression is very common with CRPS. Go figure with what this goofy disorder does to us huh??

The fact that you are recognizing these changes means that you should talk to your doctor about this. And don't hesitate.

Sometimes an anti-depressant can be very helpful, or some talk therapy with a psychologist or a psychiatrist. Or the one-two punch of both of these things. I am on an anti-depressant because of my CRPS, and have had a few sessions with a psychologist to wrap my head around the changes in my life because of the CRPS. Both of these things have been helpful to me.

Depression can be a quick spiral; you mentioned that you like your doctor, so this topic should be tops on your list for your next conversation with her. You owe it to yourself and your family.

Hang in there!

I'm seeing my therapist on Monday. I go for a bunch of reasons, but he is always directing me in a line of thought that I had never considered. Except the last time I went, the time went by so fast and I was trying to use every minute of it, when we were done he said, 'I hardly said a thing'. To which I said, 'don't matter I feel so much better and have something else to think about!'

Find someone you can absolutely trust. This guy believed every thing I said the first time I went to him. I knew he was a keeper.

Don't settle for mediocre, find the best one for you!

May God direct you in your search.
pat e

You really should be on some type of extended release pain med, you do have a chronic pain condition correct?? Short acting meds for a long term condition just seem logical to me.

I think an extended release pain medicine makes sense and then a short acting med for break thru pain.

I know on the TOS forum that is pretty much the most of the long timers have, and usually a sleep med and /or antidepressant added too.

I agree! I really think my doctors need to rethink my pain management. Right now it seems they are giving me the quick band-aid fix and not managing my pain for chronic (long term) pain.

I am on Cymbalta (anti depressant) but I have not felt any difference what so ever since starting it (about 10 weeks ago) My doctors still want to give it a bit longer to see if it is going to work. In the meantime though i find myself feeling more and more depressed and the pain not decreasing at all.

I hope everyone (the doctors) start getting their act together soon. I know injections have been mentioned a few times...but nobody has even mentioned when I might start getting them.

Maybe on Thursday I will have some more answers regarding pain management, physio, therapy and what ever else i can think of to ask before then.

Take care,
Karen

Hi Karen, I am so sorry to hear how miserable you are right now. I have to PT several times and I am also a WC injury. I finally learned to just say no when they wanted me to do things that I knew would cause my pain to increase. I personally think that we let ourselves be intimidated by medical professionals, and for some reason do not think we can say NO to something that is not in our best interests. You went and tried it with devastating results, I think you can be justified in saying no more PT right now until your pain is more controllable. Lisa

[PT should not hurt that much. I enjoyed mine very much. I had C3-7 done a second surgery. I started PT at 4 weeks. The PT's were gentle and firm, definately not so hurtful that I needed more pain meds. I got heat, and a half hour of massage after the gentle excersises. I was afraid at first but each time it got better. I don't think they are doing right by you. You should not hurt so much during or after it. I was told the excersises start with what you can do, and gradually increase. I never had to do any more, if it hurt. I did all of them as there was no pressure and lots of encouragement. Seek out a new place for PT would be what I would do. good luck and don't overdo it. ginnie

Karen,what an awfull experience to go thru! Please do not ever go back there again!! I have never heard anything like that? However you and some other's are right about how we(meaning us RSD people!) really get the run around! I think that it is mainly many healthcare worker's still have no clue about our disease! Take it EASY! I hope that you will began to feel better! Alway's Breezy55