Hi All,

I have been lurking here since received my CRPS diagnosis a few weeks ago, so I decided it was time to say hello.

About six weeks ago I had a thumb joint fusion surgery due to RA complications. About 7-10 days after the surgery, I started to feel an intense burning pain around the incision site. It felt like something was pulling on my stitches. I desperately wanted the splint off, but I had to wait another week. Finally the splint was removed and my stitches were taken out, and I got my first glimpse of the thumb. It was bright red and purple, and the skin was mottled. The skin peeled off in sheets. It looked like a third degree burn.

Luckily, the surgeon immediately recognized CRPS. From what I have read, I am extremely fortunate to have such a quick diagnosis.

I went to my Pain Mgt doctor, and he confirmed CRPS. He immediately started me on Lyrica - 300mg per day.

The Lyrica is working wonders for the pain, but the pain still creeps up to a 5 or 6 at times. But generally, I am comfortable. The side effects are pretty bad, but I am tolerating them. The fatigue is intense, requiring me to take 3 hour naps each day (or else drink 3 lattes or espressos after noon). Also, the cognitive side effects are a bit bothersome.

I believe that I am also fortunate to have my CRPS localized to my thumb. The docs that I have seen are amazed that it has not affected my entire hand. I am hoping that it does not spread.

I think often of all of you who post here about your disease. It is one heck of a monster. I also have Rheumatoid Arthritis, so I am accustomed to pain. However, CRPS is an entirely different animal. I often feel like I have a third degree sunburn, and someone is pouring salt into it.

Does anyone else have CRPS stemming from a hand surgery?

Thanks for allowing me to share my story.

Here is a pic of my CRPS looking relatively "mild".

Attached Thumbnails

 

Welcome Island Girl,

You are fortunate indeed to have been recognized so early. I would think that bodes very well for your recovery. With your surgery so recent, you probably still have pain and swelling from that in addition to your CRPS. As it decreases that should help decrease the over activity of your nerves. Good news! Really!

I always recommend Dr Pradeep Chopra's video on YouTube "CRPS Diagnosis and management". It is about two hours long with loads of tips on treatments, supplements and therapy. It is non-doomsday.

You are in that early phase where things like anti-oxidants or a round of oral steroids can make a huge difference in your inflammation. Explore all options.

I don't have CRPS from hand surgery but in my foot after my last operation. I took oral prednisone for three weeks within the first three months and for me it made a big difference. A ten day course is recommended by Dr. Stanton-Hicks of Cleveland Clinic as an early frontline treatment. Unless you are diabetic or against steroids for other reasons it is a pretty non- invasive thing to try short term.

Have they recommended any PT for you? I am sure with your fusion that complicates things a bit. Obviously your range of motion is impacted at that one joint but there may still be many benefits.

Take care and let us know how you are doing. Odds are in your favor to make progress, 80% of people improve over time per literature. I myself have made a lot of improvement and am walking a mile plus daily now. Healing is possible. Come when you have questions, need to vent or get a virtual hug. Someone is always around.

Sending hugs and Healing Love,

Littlepaw,

I am so thankful for your detailed response. I'm have made a note to watch the video, and I will do so tonight. I also appreciate the warm welcome.

I have been seeing a hand therapist who is wonderful. We are doing TENS which has helped a lot.

I see my doc tomorrow, so I will inquire about steroids. A bonus is that they will help my RA too. I have a love/hate relationship with steroids. I love their effects and hate their side effects. But since CRPS is so serious, I am more than willing to use them on this occasion.

I am so impressed that you are walking a mile per day. That is incredible. Congrats on your progress! I am an avid fitness fan, but since my surgery and subsequent CRPS I have not been able to do much. I plan to get back to swimming next week. I swim in saltwater which feels very healing.

I would avoid that much caffeine btw.

Not everyone is a fan of Hooshmand, and some of his info is certainly outdated. Diet drinks are obviously something that should be avoided even though they're allowed in his diet. In general, his info has served me well over the years, and when I follow the 4 F's diet, I do notice an increase in energy, while experiencing less swelling and pain. For someone so nwely diagnosed, it seems especially important.

http://www.rsdrx.com/Neurological_As...r_F-s_Diet.pdf

"Coffee
Coffee should be avoided altogether in patients suffering from RSD/CRPS; to
consider coffee as a simple conveyor of caffeine is naive.
1. Coffee has an acid-based oil that is an irritant to gastric mucosa. It stimulates
the secretion of gastric acidity. Secondarily, the high gastric acidity results in
secretion of adrenalin. The secretion of adrenalin stimulates insulin secretion
with resultant secondary relative hypoglycemia. The end result is tension, a mild
rise in blood pressure, and 2-3 hours later craving sweets because of the relative
hypoglycemia. Obviously none of the above is helpful in RSD/CRPS. The rise in
plasma epinephrine will undo whatever good medications are doing to counteract
the hyperactive dopaminergic system in RSD/CRPS.
2. Coffee is more harmful than caffeinated soft drinks or tea.
3. Mild tea does not cause reactive hypoglycemia and a rise in blood pressure.
4. Tea, if prepared in mild form (not too strong), contains less caffeine. It has no
acid-based oil as does coffee. It contains tannin. Tannin or tannic acid curbs
thirst and results in less demand for further consumption of tea or coffee.
5. Coffee and tea both temporarily raise the body temperature. A few minutes
after drinking coffee, the stimulation of the dopaminergic system causes colder
extremities and a simultaneous rise in systemic temperature. Tea has a much
milder effect in this regard. The cold extremities aggravate RSD/CRPS.
6. Iced tea seems to be the mildest and safest of caffeinated drinks.
7. A patient with high fever is harmed by coffee and helped by tea and lemon
juice. As is the case with home-made chicken soup being helpful to the sick (in
contrast with factory-made red meat type of soup) for unknown reasons, mild tea
has a healing effect and coffee has an aggravating effect in patients suffering from
stress and fever, including stress of complex chronic pain."

Thanks so much for this info! I was half joking about the lattes... But I have started having an afternoon iced coffee to stay awake and avoid naps. Often I find that I feel much worse after a nap.

I will take a look at the link you provided. I appreciate your feedback!

I have to second Lit Love on the caffeine. Good catch Lit Love! Having your diet as clean and nutrient dense as possible is so important.

The recommendation I read on steroid doseage was a low 10mg 3 times per day for ten days. So not too bad. I took them a little bit longer because I had a good response and tapered slowly.

I am so glad you are getting in the pool! Many of us rave about the water. As with any exercise, just start low and go slow, even more so with CRPS. You want non-painful stimuli for those nerves. It will help. Just keep plugging away. My mile has been a slooow methodical progression.

Good luck at your appointment!

There was a study done a while back about using steroids for longer periods (and maybe higher dosages?) to put CRPS in remission. fMichael linked to it at some point.

I still use steroids 1-2x a year if I have to travel or if I needed to reduce my swelling. When I'm at the max dose, it's usually the best I feel all year.

Oopsie,
I feel bad now for having this addiction to coffee after reading LIT's post on the aggravating factors caffeine. But happy to say it's the only addiction that I have (that I can talk about anyway). I've managed to cut down though.
By the way, welcome Island-girl.
My CRPS started in my forearm more than my hand but traveled there and I developed a very bad claw so in order to look more normal and help with circulation I had my wrist fused (it was useless anyway). That was one a few surgeries I've had. Now my CRPS has spread slowly into full body but that's not to say it will happen to you. My prayers are that it doesn't.
Be well...

Russ, thanks for the welcome! I am sorry to hear that your CRPS has spread so much. I think of you and all of those with severe cases of this crazy disease often. I pray for new treatments.

Today my pain doc rx'd a compounded cream with ketamine and several other actives. I hope it takes more of the edge off. Lyrica is helping but I still have pain at level 5-6 for hours at a time. I suppose that's better than the level 8 pain I had before the Lyrica.

I don't know how I could quit coffee. I love it. I look forward to it every morning. It's a ritual. i will have to give it some consideration....

Today I purchased some of the antioxidants mentioned in the video of Dr. chopra's presentation. Maybe they will help a bit. Only time will tell.