Karen,

Trust your gut instincts and the terrible experience you just had. I would not go back to this therapist. Your therapy aggravated the CRPS, which is not at all uncommon, especially during the beginning of a therapy program. The therapist should be more in-tune to this possibility.

There is a TREMENDOUS difference in therapists and you need to find one that truly understands CRPS, is gentle, and has some compassion. I tried 3 therapists before settling on one and he has been a godsend.

I would definitely explain all of this to your doctor (how do you like your doctor?) and ask for a referral to a different therapist.

If you are using a Pain Management Doctor (you really, really should), they are normally way more familiar with CRPS and may be able to make a better referral for you.

Hang in there, your pain flare is likely to subside soon.....and keep us posted!

Hi,

I have a very good relationship with my doctor. I trust her 100%. She seems to be in my corner and not afraid to go up against Workers Comp and their doctors.

The doctor that designed this "specialized plan" for me is a physical medicine doctor. One that Workers Comp referred me to and not a choice of myself or my doctor. He told me there would be an increase of pain when therapy started but not to this degree.

My doctor has told me not to go back to the physio until we can meet again on Thursday and talk about what the next step is going to be.

Take care,
Karen

Hi Everyone,

Thank you for your responses. They did help. When you are feeling pain like i was/am it is nice to know there are people out there you can reach out too.

My pain was continuing to get worse this morning. My doctor was tied up with a patient at the hospital and was unable to call me back right away. When I explained to her receptionist that every time i moved wrong or stood up too quickly that I would get a stabbing pain in my right temple that would shoot through my shoulder, down my arm and back and made me pass out (dizzy) or throw up, she told me to go to the Emergency room at my local hospital.

Well needless to say, just like I thought, they were unable to do anything for me. But they did treat me with a lot of respect and were very caring. The ER doctor was very honest with me and told me that he felt it was a reaction from the physio therapy but because I have been diagnosed with a chronic pain disorder there was really not much they could do. Starting to wonder if this is going to be the reaction of other doctors out there from now on.

In the meantime my husband had called My doctor and she was finally able to call back. She has upped my dosage of pain medications for a few days and added gravol to the list. It seems to be helping as I have not thrown up now for about 4 hours. I also was able to get a little sleep when I returned from the ER. Shoulder is still very swollen and bruised and pain is still bad. But I am able to tolerate it a little better now that i am not throwing up every time a stabbing pain comes.

My doctor has told me NOT to return to that physio place and we will get together on Thursday (I had my weekly 2 week appointment set up already for then with her). So, I guess I will find out Thursday what the new game plan will be. I have no problem going to physio therapy what so ever...but all I know is I really do not want to go back there!

Jo*mar thank you for your response. I have found that I seem to have delayed pain a number of times. If I do something for too long I tend to pay for it later on...has been that way since my injury. Don't get me wrong I feel pain during the task but it just seems to continue to get worse a few hours later. Not sure if this is normal for RSD or if there is in fact something else going on along with RSD. I am still waiting to hear my MRI results and EMG/NCV results which I think I will find out on Thursday as well.

Thank you again all, will keep you posted if there are any changes.
Karen

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