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

Littlepaw,
I have read a couple articles concerning pain interrupting our ability to experience REM sleep, which in turn does not allow us to sleep a healing sleep. So I see your point on trying to get the pain under control. I am working on switching when I take the Gabapentin, taking at night when I need it the most. I have found that when I take it with the Oxycodone-Acetaminophen it settles the fire somewhat and I do get the 4 instead of 2 hours sleep. Does this sound like a sound plan, taking it at night as if I'm on 3rd shift rather than in the day? I'm also making a list of questions to ask my doctor when I see him. Thank you for all the ideas!! Your a life saver!!
Dawn

Welcome Dawn.

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.

Hi Little Paw,

Who is Stanton-Hicks? And, has he or she published anything about this? I'm just curious. If it's anecdotal that's fine by me, but I've always wondered if there has ever been any long term follow-up of CRPS patients. Getting better over time is certainly my experience of CRPS. Mine was diagnosed following hand surgery 25 years ago.

Thanks,
Darcy