[RSD_PITA]

I'll try to keep this short, though I'm sure thats impossible. My girlfriend had a hand injury that was making her tendons between her pinky and ring finger slide out of place. Her 2 fingers functioned painfully, but it least it was functionable. It was a work place injury and Labor and Industries was responsible. It went a year as being diagnosed as a contusion. Finally we saw a doctor that said he knew what the problem was, and could fix it.

She had surgery, which was not successful. Since then, her fingers have gone into contracture, and shes in constant pain. Her new hand doctor diagnosed her with CRPS, along with her chronic pain doctor, and the neruologist.

Her bone scane was possitive, but both the EMG and Nerve conduction were negative.

Cymbalta had bad side effects. Lyrica helped with her clarity, but unfortunatly did not help enough with the pain, and at higher dose her hair was falling out. Topamax made her way to "antsy", and made her forget where she was, and drop things. Horrible drug for her.

She is on 3600mg of Gabapentin, 2100mg Oxcarbazepine, 24mg Tizanidine, and 75mg of Amitriptyline daily. She also smokes medical marijuana to help with pain and nausea.

She had some blood work done, and her sodium was low so the doctor lowered her Oxcabenzapine to 1200mg a day. This sent her pain through the roof. She has since then gone back to 2100mg a day, but the pain has not returned to "normal".

She has some IME's scheduled at the end of the month to get some more opinions. Shes trying to get a pain pump approved. She had a temporary epidural catheter placed in April that helped her hand open a great amount and relieve the pain. But Labor and Industries called the trial a failure. This blows my mind.

Is there anyone from Washington State that has a good chronic pain doctor? She does not get any actual pain medication prescribed to her. Just medications that mess with her brain / nervous system. We are thinking of trying another doctor. Maybe one that has more experience with CRPS / RSD.

Her and I could both use some help / encouragment. I try to stay possitive, but she does not see the light at the end of the tunnel, and hates life right now. I am what keeps her going.

Thanks for listening.
Heffe

[zookester]

Hello Heffe,

I am sorry your girlfriend is going through this, but I'm also glad you found this site where you will find a ton of great information and support.

There are two fantastic pain doctors that I have seen in Washington State who are extremely knowledgeable and caring with regard to CRPS.

Dr. Daniel Nelson - Kirkland
Dr. Srini Sundarum - Tacoma

Is your GF also using things like epsom salt soaks, lidoderm patches, voltaren gel or specially formulated compound creams? I believe the medical cannabis cream has also been very effective for many people so it might be worth looking into.

Has she been given Flexeril for the muscle spasms or contractures?

Has she considered a spinal cord or peripheral nerve stimulator? I know many people have differing opinions about them but, at least for me it has been a blessing.

I do hope you find a good PM soon!
Tessa

[Brambledog]

Hi Heffe,

Zookester gave you good advice so I won't repeat it!

Your girlfriend is lucky to have your support, and well done for going so far to help her cope with this cruel disease. She's certainly had a really rough time, so please pass on some kind thoughts from me, and tell her to hang on in there.

You dont mention how long she has had CRPS so apologies if it has been some years and you know all this!! I am starting my third year with CRPS, and i think it does get easier to deal with for most of us. The first 6 months were horrible with pain off the scale, and nothing working to relieve it. A grim time. After that I started to get a handle on things, helped by a pain management course, and finally finding a good physio and a pain doc I could rely on. Support is key. I have personally found little that really helps the pain except low dose Lyrica, and non-prescription things like Epsom salts. Several meds have given me nasty side-effects and I've had to stop them - it does make you scared of new ones The biggest thing for me is coming to terms with and learning to cope with them pain itself. Some days of course you just can't cope, and they are scary dark times. But you do find it easier, your body gets a bit used to being in pain (sadly) and you learn to distract yourself and find things you can do without aggravating your symptoms too much. But it's hard. Hard to accept and harder to look to the future sometimes.

She must be one brave woman, and you too of course. I know from my own husband how scary it is to see the person you love suffering when you can't do anything to relieve it. It's one thing to deal with something like that for a couple of weeks or months, but when it goes on and on it puts a lot of strain on things. Communication is everything...as I'm sure you know.

Anyway, just wanted to say not to despair. There is always hope of improvement, and something new to try (not necessarily meds). It's never going to be easy, but it can be lived with, and more importantly life can still be enjoyed.

Keep posting and I hope you both have a better day tomorrow

Bram.

[AZ-Di]

I'll echo what zoo said and yes do find a good Pain Mgt. Dr. I had a broken wrist and surgery 5 days later. I knew within a week that something was very wrong, but I was treated like I was WAY overreacting! My hand was contracted and would not move, on top of that it had all of the CRPS/RSD symtoms (I had never heard of it at that point). I was in excruciating pain! It took a very knowledgable P.T to raise the red flag to my Dr.
Anyway, I've tried several meds., and have settled onto about 5. I've had 14 nerve blocks through my neck (the first 3-4 having the best effect). I did the spinal cord stimulator trial only.
With the nerve blocks + frequent P.T I've regained some mobility of my hand and so far the pain is a lot more manageable.
This is a great group for advice and support!

[RSD_PITA]

Thanks for the replies all. Sorry it took awhile to get back to reply.

She was diagnosed with it about a little less than a year ago. Her surgery was done in July of last year.

She has not tried the epsom salt soaks. We'll have to try that out. Flexiral did not help her. She had a cream prescribed to her, but was not able to try it because of the cost. Labor and Industries would not cover the cost, and she does not have any insurance. She had a trial of an epideral catheter and that helped a lot with pain and mobility, but L&I said it was not a success (probably because she was not able to finish the pain clinic rehab).

L&I is giving her 3 doctor evals at the end of the month (hand, neurologist and psych). If all goes well, maybe they will move on and help her. Her preveious employer is saying she has pysch problems which are interfering with her getting better.

Thanks for the doctor suggestions. If L&I does not drop her claim, we will have to look into them and maybe get her pain doctor changed. Hopefully things will get better after the evaluations at the end of the month.

Thanks again for your replies.
Heffe