WOW Lisa you have been through alot. I hope you find relief. Are you saying the therapy glove caused the atrophy or the brace? Thanks.

There are lots of options even with opiates. YMMV. I've never taken OxyContin (time released), only Oxycodone (immediate release) during a trial run when MSIR started to bother my stomach. For me, generic MSIR didn't give me the same narcotic high as Oxycodone did.

If you're taking OxyContin, again, their are other options like Avinza or Kadian (super pricey.) So, just because you like one drug better than another, there still might be better options within that family of drugs.

Even deciding on how you and your doc want to procede with dosages of IR and TR is complex and can be played with to see what works best for you.

BTW, the acceptance thing is a process that will take many years. I should have said that before.

Dear gatorsmomma -

Allow me to add my two cents. There are a number of true therapies out there worth pursuing, notably ketamine infusions from someone who knows what s/he is doing. Ditto blocks with Botox, Infliximab (Remicaide), etc. These are all treatments that offer better result in the relatively early stages of the disease - where you are now - when the CRPS is associated with a neuro-inflammatory process, than later on, when it's maintained by the brain itself, at which point the true treatment options become significantly more limited. ("Non-dominant unilateral" electroconvulsive therapy being one of the options, even though most ECT docs will only give it if you have significant "co-morbid" depression.)

That said, at least in my experience, the pain got more manageable as I hit the 5 year mark, even if, at the 8 - 9 year mark (without effective treatment, I was disqualified for entry into then strickly regulated ketamine trials because of other pre-existing medical conditions ) I developed other neuropysch conditions that are now debilitating in their own right. Even with years of meditation practice and pretty high level of equanimity.

To tell the truth, even with manageable pain levels, the last few weeks have been some of the worst since this thing started. (And my apologies to all to whom I have flaked socially of late: you know who you are.)

Bottom line: the sooner you seek out ketamine treatments or the like, the better off you will be in the long run.

take care,
Mike

As for the glove before I was dx with the RSD/PN I was put in an airboot and was in this for months and it made my condition worse because I lost so much range of motion. Getting out of the boot was so hard and so painful because my ankle/foot was used to being a certain way and protected but in the long run was making things worse.
As for acceptance, I think for myself after 3 years I deal better mentally with this then in the start. I am more rational and calmer. Not to say I don't have my days but overall. For me though I may have the same pain physically dealing with it in a better manner helps me get through the days. I'm not saying you have this problem but my experience. I do have a far way to go on this and trying to create a better life through the barriers.
Feel better all.

Lisa, this is a beautiful, compassionate, letter. One that all of us, no matter how long we have had this bear. We look for the good in each day, look for way to encourage others, in turn, lifts our spirits up Thank you for the encouragement, your friend, loretta

I just want to thank everyone for taking the time yesterday to help me during a VERY bad day! I know with this disease there will be quite a few as I have had them before.

Yesterday was especially hard because I really had my hopes up about the peripheral nerve blocks being *my answer*, *my path to remission* and when that wasn't instant, I lost it!

Today, is a good day and I think the block has actually helped. My spasms are significantly less, my swelling is down and I don't see as much blotchiness. I still have the burning but maybe that will curtail some too.

THANKS AGAIN FOR BEING A GREAT GROUP OF SUPPORT, especially at a time when I truly felt hopeless!!

Wow, I was really having a rough day yesterday so I need to clarify my clarification! When the original break occurred I was in a cast for 1 month, an external fixator for 6 months, and then another cast for 1.5 months. Since that point I have had many other surgeries, neuroectomies, proximal row carpectomy, two grafts from my hips (which now have RSD) into the arm, and two total fusions. Through this time I was constantly in a cast, custom brace or a cock-up brace. It has been so long that it is hard to tell what caused the atrophy, it just is. I would urge anyone to try to be rid of any outer support if at all possible. I do seem to get relief from warm sunshine and humid air. The tornado we had pass through the other night was predicted by me before the weather service got around to it!! I hope all of you are having a "good day", you are all in my prayers, Lisa (sorry for the spelling errors in this, just not sure about some of the medical jargon)

Lisa,

I hope you and your family made it throught the bad weather ok. I was able to predict our bad weather too, we wound up with floods. I attempted to not use my glove on beautiful days only to have a good breeze come by and put in the bed the next two days. I am so afraid of that so I just don't chance it.

I am starting to question my RSD versus others because after reading alot of the posts it seems people prefer soft fabrics. In my experience, the soft fabric gets cooler and rubs across me and causes my pain to be worse. I do desentization and that has helped me be able to touch my towels and stuff but the soft stuff can still be bothersome at times.

Also, does the burning ever go away completely? Even in remission? Today has been a better day than most yet the burning just wont subside. I know I have alot of homework to do about this disease and that's why I am here so I hope no one minds all the questions.

OK, had to follow you here; your introduction certainly moved me. From these details, you and I are quite similar in onset cause (hands with damaged nerves from invasive events). I was on the top step of an 8' step ladder, painting the outside of the house (yes, the step that says "Don't stand on this step"). Had just opened a new can of $29 paint (way pricy back then) when the ladder started to wobble. Fine, fall over ladder, but I'm not losing this can of paint! Somehow, I reached THRU the upper part of the "V" at the SIDE of the step ladder. The ladder collapsed, as they do when operated incorrectly, and I did a faceplant; the can tumbled away, painting the yard. Over half my body laid fully atop the collapsed ladder - I don't remember initial pain. I do remember seeing my arm, the protruding bones and blood, briefly fascinated that the back of my hand nearly rested on my forearm... then barrel-rolling and screaming until a big tree stopped me. The ex and my business partner got me in the house. Both fainted, and I drove myself to the hospital. The on-call (4th of July) ortho Dr said "Say hello to your little friend". (Yes, I love the old movie Scarface). I will finish with me by saying, there is no remission, there is a possibility of limiting spread, there can be life without just "sucking it up", and you can educate family (you'll learn some mental reinforcements as you guide them to reality and of understanding what you are dealing with).

Questions for you first:

- Is your hand/arm skin still glossy, shiny? Compare it to unaffected body parts if you have not noticed, or are unsure of my question. It's truly like a sheen on water from things like oil. Look for this from 360-degrees; top, bottom, between fingers, every millimeter of affected areas.
- Do you still have heavy perspiration (it's not, really) to the level of raindrops? Or a weak shower? That which would saturate tissue, paper?
- Do you keep a redness log daily? From brilliant, fire-engine red, to almost pink? Do you also map the color to where you would rate to a stove? (broiler, burner on high, low warming on glasstops) - and your pain level (account for time from last pain pill, if you take them)
- Does your swelling coincide with all, some, none of the above?
- Have you or do you still have regular corn husk therapy (think the proper tech/med term is Fluido Therapy - say corn husks to any PT/OT and they will know, instantly)
- Have you/do you have regular parafin therapy?
- Have you/do you have regular weight sessions that only includes walking while carrying a hand barbell, HANGING DOWN (increasing weight as tolerated)
-Have you/do you have regular sessions with the small child's bead maze "toy from HeLLo"? Have to post a link here that shows examples of what I mean; don't know their real name, their pure sight elicits abject terror for me : http://www.sensoryedge.com/mazes.html

To start educating your family, do web searches on RSD and the Civil War. Dr. Silas Weir Mitchell. Don't stop with the first one or two you find. Some out there, now, are very biased (for drug companies, infuriation of the long existence of PTSD, phantom limb pain, and current military benefits). Look for historical and medical articles. RSD's (causalgia then, CRPS now) true surface breakthrough came from Civil War injuries like limbs blown off from cannon and amputation without anesthesia and pain medication. It's real, it's old, and is controlled to differing extent with modern medicine.

Wow, this got long! If you answer, I will continue with more commentary from your answers. It may take a bit. I have a long, painful procedure tomorrow to pinpoint what recently killed my hands for good. Outcomes will not bring me improvement; just to allow a good Neurologist to write an article for his peers. Hey, it might help a future patient. He's not charging - I just pay in pain instead of dollars. Hang in there!!

Hi Katie, Yes I have shiny hairless skin on my arm and excessive nail growth and a type of arthritis that causes my fingers to become deformed but has little pain.
I often sweat heavily, soak my nightshirts, and I never sweat before ( yes I have had the change due to a hysterectomy). I do not keep a pain log or redness log, and have not noticed that the swelling or itching coincide with any particular color. I have had the corn husk therapy and de-sensitization without obtaining any good results, just more pain. I also tried the parafien therapy but it is too hot to tolerate. I no longer do any weight therapy and keep my dexterity up by playing the piano, but not at the level that I was at before the injury, sometimes just scales. Good luck with your procedure, it sounds like you have really been through so much that it has to be difficult to face even just one more. I will pray that someday there will be something that can help you. I really admire your beautiful attitude and humor. Best wishes, Lisa