Hello to all, I'm Dawn

I am very happy to have found this site. I have been recently been diagnosed with RSD, after being attacked by a dog at work and having to have rotator cuff surgery. My ortho initially diagnosed me with RSD and impingment, and the workers comp doc also confirmed the RSD. A little back ground, I am 47 years old and I have lived with left side paralysis since age 7 due to a severe stroke, and the shoulder injury was to my right shoulder. Due to this life has become a bit more interesting.

I do not believe I present all the symptoms that I have been reading about, and have tons of questions. Answers are few and far between...

What I'm finding to be most prominant as far as symptoms go are: lava constantly flowing down my arm to my finger tips, slight swelling (mostly in the shoulder), severe numbness and tingling under the lava (so it feels like there are two arms not just one), insomnia (2-4 hours of broken sleep per night, short naps throughout the day can increase this to maybe 5-6 hours), and I cannot think straight to save my life...

I despise the drugs I seem to need to decrease the pain, and I really try to limit what I take. I'm worried that this will not get better, and this will be as good as it gets. I've tried very hard most of my life not to feel sorry for myself, but I am sorry to say, with this added to what I've had to put up with for 40 years, it is almost more than can be handled!! I've only been dealing with this for about 6 months, and am ready for it to be done.

I find therapy to be useless. I get upset with the therapist because she does not believe RSD is the problem, and during therapy she will firmly grab my shoulder to correct the angle of it while I'm lifting weights to strengthen my arm, this about drops me. She is convinced that I'm just pinching the nerve because of bad position. I try very hard to deal with the fire this immediately causes and not scream bloody murder, becuse I know she does not believe. I'm not sure what I can do to convince her?? I had to beg with tears in my eyes to stop putting stim pads directly over the area because that was killing me. stim is torture but she will not stop using it. Anyone else have issues with Stim?

I hope I'm posting this in the right area, if not please let me know.

Any advice would be highly appreciated!!!

Thank you,
Dawn

I would drop that PT person ASAP!
You don't have to stick with anyone that is not helping you and for sure ones that are causing you more pain..
*It is not the PT's place to decide what or what isn't causing you pain..*

Tell the doc in change what is happening..

It may be trickier if work comp is involved , but get an wc atty on your side if you don't have one for your claim yet and I sure hope you have your own drs to get best care..

Which RSD symptoms do you feel don't match up for you?

There is another possibility may not be , but I want to mention it just in case.
Since you mention rotator cuff surgery, I'm not sure how that injury happened with the dog attack.
But if there was a fall or hard yank or jolt to the arm/shoulder/neck??
Some of what you re experiencing might be thoracic outlet syndrome TOS for short.
Another kind of rare thing like RSD unfortunately.. You need experts or extremely knowledgeable drs & PTs to get a dx as well as correct tx..
It can be caused by impinged nerves and/or blood flow in the neck/shoulder /collarbone areas, even the pec minor can play a role..
Often there will be muscle spasms , trigger points in the neck & upper back areas.

If it is TOS- or something like it - the weights/strengthening PT is doing is a bad thing..it will make it worse.
but passive work on shoulder posture is a plus. meaning letting gravity do the work..
I'll put some links for you to read thru- so you can see if it fits a bit or not at all..
Some TOS forum sticky threads-
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html

Thank you Jo for your reply and for the info!!

The dog attacked happened while at work, and the owner was wanting to introduce me and my client to the guard dog so we wouldn't beafraid of it... He was in a small room with a half door and I was told to pet him so while reaching over the door, the dog attacked and a quick little tug of war ensued. Not sure who won, me or the dog... This happened in May, had ptand injections,then surgery, more pt and another injection.

The ortho claims it is RSD and a specialist for WC also says it is that, but I will read through the links and mention it to the ortho when I see him in a couple weeks. I have only a couple more visits with pt, so changing now would likely not fly, good idea though!!!

I do have a WC lawyer at this time, and have had many lovely battles with my employer so far, it is an unusual circumstance. Who gets attack by a dog while working as a job coach...

I feel so much better just knowing there are others out there to talk to, but saddened I'm not alone in this... Would not want anyone to feel this fire!!

Thanks again,
Dawn

opps I just double posted, thought I lost it all the first time and re-typed it, sorry....

New members posts may have to wait a bit for approval...so double posts happen. no problem..

If you stay with that PT- Don't let PT abuse you or grab your arms speak up and be clear & firm.. tell them they are hurting you. They are getting paid to help you, not make you hurt worse.
You may have to be firm about protecting yourself from anyone bumping or grabbing you rsd areas. Even out in public, no use risking more pain.

It may even be some sort of "test" to see how much you will tolerate to see if it is really RSD or not.. wc plays some weird games, do they have any say about who does your PT ?

Did the dog & his owner get in to legal troubles?

If swelling is the main missing sx, from the RSD list then it probably is a fit.
Maybe the swelling sometimes appears later on.. sorry..

Does your atty know anything about RSD, like long term medical costs?? as unfortunately there is no cure and might spread...

You might what to look thru the RSD sticky threads, there is one with pictures, so others will know what to be aware of if they get similar sx.
Better to know what may lie ahead than be caught off guard and not prepared for possible new sx down the road....

Getting late in my neck of the woods.

Luckily for me WC has already approved the RSD,so I hope they are not trying to be jerks about it. I can see your point though... they are such lovely people...

I am on Gabapentin and have pain meds so that helps me not drop dead from pt. And I do tend to tear up and I can't stop the shaking when she gets to rough, which backs her off a bit. I'm not very good at expressing verbally that I'm in pain, too many years of hidng it.

The attorney's who is handling my wc case also handling going after the dog owner. I do not know if they know about RSD but will be finding it out!! Thank you for pointing that out, everything seems to slip my mind...

I have looked at the pictures, and I'm scared, pretty much senseless.. my right arm is all I have and am very protective over it. Had a severe panic attack when they told me they were going to do a nerve block and it would paralyze the entire arm... That was oddly enough very real fear, never realized I could feel that way. One good thing, if this spreads to my left side, I will have better coping mechanisms, first time being paralyzed would be a good thing

Sleep well, and thanks again!!

Welcome scubaforsythe.

Welcome Dawn,

I am so sorry to hear about all you are going through. You will find solace, suggestions and companionship here. Jo*Mar made some excellent points all around. I think the TOS possibility is worth pursuing. I always harp that nerve entrapment should be explored when RSD comes up after any procedure. Dr. Lee Dellon goes so far as to say 80% of CRPS cases have an undiagnosed entrapment. The symptoms do mimick CRPS and a Nerve Conduction Study can help rule this out. It is important because treatment is totally different.

On PT, it is absolutely okay for you to advocate for yourself and it is NOT okay for her to be causing pain. I am concerned that what she is doing is making you worse. Movement and exercise is very important to recovery from CRPS but pain must be kept down. Nerves are already overactive and releasing chemical messages that get to your dorsal horn and brain and can cause changes. It is a fine balance. Many people find aquatherapy beneficial. You want range of motion without stress. If you are lifting weights over your head that can be a bad idea on multiple fronts, some just age related. Also when our nervous systems are already overloaded things go kablooey. I had radiating pain and tingling up my leg for months and thought it was spread. Turns out I was aggravating a different nerve than the injured one riding the recumbent bike. I figured it out after taking 10 days off my workout. My point is our systems our delicate and you don't want to add any stress to it. It is vital that we figure out what helps and what causes flare. Don't feel bad starting low and progressing slowly. Just keep at it!

Lastly, everyone's symptoms are different but I never had swelling of any magnitude either. I do have pain, temperature and color changes. Take a look at the Budapest Criteria and see where you fit. Keep taking care of yourself. Take what you need to manage pain but remember that there are a lot of med options. My mood went to hell on neurontin which is great for many people. Nortriptyline at bed happens to be better for me. Get your workup to be sure they didn't miss anything and DO NOT GIVE UP. Odds are in your favor to improve. Most people with CRPS get better over time. Stanton-Hicks and many other bigwigs support this.

Sending Healing Love, Littlepaw

Thank you Kitt for the welcome!!

Littlepaw, thank you for the encouragement and advice. I have been doing some reading and am definately going to talk more with doc at next visit. am going to look at the Budapest Criteria asap also!!! I definately don't want this to swept under the rug as that is how it feels most of the time.

How in the world do people function with no sleep? I'm having a very hard time with this, and am not sure how long it can keep going like this. I was never one to sleep much more than 6 hours a night, but now only getting 2-4, wow it's like I'm watching myself throughout the day, not fully being in my body. How do you get up and work all day and come home and take care of your family? I just don't see how I'll be able to do this and function with left arm useless and right arm on fire.... I'm feeling incredibly weak, and can't get out of my head what my mom always told me growing up, "quit feeling sorry for yourself.' I ust got off phone with her and we were talking about it, and she brought it up again....
Is waking up truly worth it?

Thank you again.

Dawn,

Being sleep deprived never helps anything. This is one of many reasons to do what is needed to get your pain as under control as possible. Lack of sleep makes pain worse and vice versa. It is really important to identify your triggers and avoid those - over-aggressive PT being one. I can't drink any alcohol or eat spicy foods (God I love salsa!) both will cause vasodilation which puts me in a world of hurt. Overheating in general and a dependent limb position for too long without moving it cause pain. I am worse depending on my hormone cycle and adjust activity accordingly. Even if you have a hard time finding things that help you will be able to identify triggers to avoid. Try different meds if you are not getting relief. Tricyclic antidepressants like nortriptyiline and desipramine work well for some in addition or instead of the gaba/pregabalin meds.

Go to bat against doctors when needed and follow your instinct. My first surgeon, ortho, inadvertantly tore part of a nerve branch in my ankle, probably with the retractor. The injury was identified by a plastic surgeon peripheral nerve specialist and repaired through a complicated procedure. The orthopedist insisted my first procedure was a success, despite my intractable pain. I had to fight for referrals and did get them but only because I was stubborn about my care. Not everyone gets a nerve injury or scar entrapment during surgery but they can happen and need attention when they do. My original post-op hellish pain decreased by 80% with the repair. I did not get CRPS until another un-related procedure.Go see neuro, see plastics, see physical medicine, get NCS/EMG, get vascular consults, etc. CRPS can have an underlying reason or contributor which might be treatable. Don't give up on yourself and your own wisdom. Ask for help and go to therapy if needed. I worked with a wonderful woman who really helped me deal with panic and depression. I hope you find relief soon. Waking up is worth it. Sometimes I couldn't see ahead more than five minutes, but I have made progress and I am glad I haven't given in. I can walk a mile now more days than not after 9 months on crutches. Sometimes I felt I wasn't getting anywhere, but persistence did pay off for me and will for you too.

Littlepaw