Thank you all! I am trying my best to push for quick action but can only move at the specialists snails pace which is driving me bonker. Thank you for Shari g what you did that worked for you! It's ironic that you mention mirror therapy as I just brought that up at my dr apt on Monday and he acted as though I were off my rocker. to me it had sounded promising. I think perhaps I should find a different dr but time is not on my side and I know that.

I bet that most of us here have had multiple doctors look at us like we had two heads

I can really only speak from anecdotal evidence of course - but I can say 100% that mirror therapy worked demonstrably as a modality for me. And research studies show it has progressively less effectiveness based on the duration of any condition. Having read through all of your previous posts here I see that you are dealing with a recent surgical trauma from earlier this year, although you have a past history of recovery from RSD as an adolescent/teen.

Some of us are more prone than others based on a multitude of factors - but the first line of defense after any trauma - be it an accident, surgery, etc - I think should be boosting the body's immune system with antioxidants, and reintroducing GENTLE motion in the affected area within 48 hours of the initial trauma. The old "use it or lose it" adage applies. Mirror therapy helps override the RSD "guarding" instinct and lets us use it with progressively less pain over time.

For my affected leg I bought a full length mirror, sat on the couch, and did simple range of motion movements behind it while looking at the image of my "good" leg doing the same stuff. Left/right, up/down, and rotational movement. Made uppercase and lowercase ABCs.

It wouldn't be too difficult to put together a mirror box for your hand/arm.

The best thing about it for me (besides the noticeable improvement that came in about 2 weeks) was that I was taking my recovery into my own hands and not relying on the agonizingly slow medical system

Thank you so much for your input! I figure anything is worth a shot at this point. My surgery was back in dec. then another in June. I believe the RSD started after the first one though

Hannajane, I am so so sorry you've had to go through this. EMG is a CRPS patient's nightmare. The correct diagnostic tool, and the only one I've ever heard of is a Triple Phase Bone scan. It's done by taking Xrays before and after a radioactive dye is injected into your veins. Bones affected by CRPS absorb the isotope differently than "normal" bone. Thing is the test is only about 55% effective, meaning a negative or inconclusive result doesn't mean the person doesn't have CRPS, but generally a positive result does indicate CRPS.

Don't fear the flu shot, My CRPS is full body now but with the right side not as bad as the left. I set limits for touching, making sure any Drs., Nurses, or Techs know that a bad touch could mean a scream. I don't worry about not seeming macho by saying this, some "Macho" guys would be whimpering shivering lumps if they had to endure my pain level on a "good" day.
Has your primary care talked of a referral to a Pain Clinic yet? Treatment speed can be key to contain and get a possible remission.
Also if your Dr. hasn't put you on pain meds yet try Aleve or Extra Strength Tylenol they're not much but with CRPS pain feeds pain and can only make things worse.
If you have Allodynia (feel pain from light touches or even a breeze) keep that area uncovered as much as you can or wear soft fabrics that won't aggravate your pain.
The baths are lifesavers but in a pinch almost any warm water can help, at times I'll just let warm to hot water from the tap run over my hands and even take my wet hand and use it to bring the wetness and heat to my upper arm.
We do what we need to do to get by... best of luck and soft thoughts always..

I am finally making some progress with a pain clinic....they scheduled three stelae ganglion blocks but not til mid November! If the drs were in this pain they would learn not to move slower than snails!

I can NOT stand the wind or most clothing which is becoming an issue as we head right into winter! I didn't know there was a name for it. I've been wearing tanks with a very light sweater that I have two of and can tolerate but as soon as I can I get the sweater off.....problem being is I am also extremely sensitive to the cold so my heating bill will be awesome lol

I notice to I seem to be sensitive to weather changes in general as I am often worse those days. Not sure why.

I honestly feel crazy....I'm always saying, this hurts, that hurts, don't touch me, whah whah whah.......I want my life back!

Last night around 3am my arm was really hurting so I filled a bucket with hot water and Epsom salts and sat there with my arm in the bucket as I watched a movie just to try to shift my focus. Lol

I'm glad they were able to get the blocks scheduled...sucks that you have to wait but that's usually fairly typical in my experience.

I would strongly recommend desensitization therapy for the hypersensitivity. I am extremely sensitive to touch, cold, etc...and this helped me a lot. Don't get me wrong...it was hellish to go through...but I can now wear normal clothes (though I'm still sensitive and pretty picky about fabrics) and more importantly I can handle wearing things that prevent the worst triggers like gloves, scarves (which I hate but protect my neck which is extremely sensitive to air movements), and Omni-heat undershirts in the winter (these help me a lot so I don't get too cold). The desensitization therapy made that possible because I was SO sensitive to touch that I couldn't wear anything for a while except EXTREMELY loose t-shirts (like 3-4 sizes bigger than what I normally wear). Hard to function and live a normal life when you can't even wear normal clothes...something about normal clothes that help my mental health too and make me just feel better.

Did the bucket of warm water help? I hope so. Other things to maybe consider trying would be a heated blanket/throw (stores should be carrying those again now), heating pad, and even those heating patches like therma-care (I normally buy the generic ones and buy the "neck" ones because they are easier to wrap around my arm, ankle, etc)...and I love my space heater because it helps me a lot without having to have anything actually touching me (though my boyfriend now wears shorts year round in the house if we're in the same room together...lol).

Hope you start to see some improvement soon. Keep trying different things and try to keep track of what helps, what hurts, etc...no matter how small. Having an arsenal of tricks up your sleeve to help with the pain...no matter how small...is something that helps me so much. I use various combinations to get through the day and deal with pain flare ups.

Good luck and I hope the blocks give you some additional relief!

I'm kind of pushing to move to a nudist colony on a tropical beach....just kidding.

The clothing is making it hard to be socially acceptable this time of year here. My dr says the only way to get over it is to expose myself to what hurts....ehich I believe is the therapy you are speaking of. My pt has my playing with sand and rice. However, only from my elbow down and I have problems in my shoulder too.

I don't think I could tolerate a patch even if it was heated. I'd thought about an electric throw....maybe I'll order one or maybe try the little heater idea. Thanks!

I've done well enough with clothing that I am now comfortable wearing some clothes. I can wear soft clothing that isn't constricting without issue. What I can't stand (and doubt I'll ever be able to) is a bra or shoes. A bra is sheer torture, it's like having someone wrap a wire across my shoulder and hang off it. It doesn't help that I'm well endowed, so I can't really leave the house without one. I know surgery is bad, but I'm actually considering surgery to simply chop them off and get fakes so they're perma-perky so I can skip the bra and not look like a freak and be comfy out of the house. Won't help with shoes, but it'll help enough that it could make it possible for me to look for part time work.

Anywho... what has really helped with clothes has been to shop for the softest possible clothes I can get my hands on. I am one of those "always" cold people so I'm always either dressed or wrapped in a fluffy blankie at home. It made a huge difference (after a few years) that now keeps me from suffering when I wear my preferred clothes. I can even wear soft jeans now with only mild discomfort.

So if you start with the least uncomfortable or least painful, you may find that with time you'll eventually be able to tolerate things you never thought you'd be able to. Just know that it may be faster for some than others and be patient.

Bras were one of the hardest for me too...I had to use a lot of Lidoderm patches under the straps and stuff where it was the worst for a long time (I would cut the patches up and use the smaller pieces where I needed them vs one large patch). But eventually I was able to work up to a tolerance for the bras...at least for a limited amount of time...there are still times where it's a complete no-go though...lol!

For me...desensitization focused a lot more of different textures...especially different kinds of fabrics. We also used feathers, rice, etc...but I found the fabrics were the important thing to get me back in clothing. We played around with different amounts of pressure. It really was a painful therapy but totally worth it for me.

Shoes...oh how I miss my gym shoes...but I've managed to find stuff that works for me. I mostly wear ballet flat style shoes these days (with nice athletic shoe type soles on them). They're easy to get into and out of and don't touch the parts of my foot/ankle where the pain is the worst. Very important to get ones that are soft though and that will stretch as needed. I got some new shoes just a few months ago because my old ones were just run into the ground and with also being pregnant I needed shoes that didn't hurt my feet. I'd been eyeing these shoes on amazon.com for a couple of years but I hate spending a lot of money on a pair of shoes...but decided to bite the bullet and just get them. They're the Maha Breathe flats by Patagonia...they are WONDERFUL. Right out of the box I was able to wear them and they were so comfy...with breathable mesh all around the sides and they definitely stretch out with my swelling feet...and they are SUPER light. I seriously thought the box was empty when I got it in the mail...that's how light they are.

They don't work out well if it's cold or raining though...so for those times I actually have some knitted Ugg boots. Another splurge on shoes I didn't want to make (especially since I think they are hideous)...but honestly it was a great purchase for me last year. They are toasty warm and comfy. Only issue I have with them is if my ankles swell then it's hard to wear them because of where the ankle seam is on the boots...but it's not usually a problem. There's plenty of room in there for swollen feet...but the ankles are a tight fit...just depends.

But boy...I do miss my gym shoes. I'm a total jeans and t-shirt with gym shoes girl...but I gave away something like 40 pairs of gym shoes a couple years ago when I came to terms with the fact that I just couldn't wear them anymore. I still try some on every once in a while to see if I can find a pair that doesn't hit me in the wrong place and have only found one style of the years...and the company that made them close so I can't get anymore.

My favorite two pairs of shoes are my ballet flats, in gold so they match everything and look adorable and class it up, also with rubber soles, and my flip flops. I actually paid $25 for the flip flops and that was their sale price. They are rather fancy with gel padding, thick soles and thick, soft, durable straps. I've been shopping for years for a pair of winter shoes but can't find a pair. My left foot, ankle and leg swell so it's really awkward trying to find shoes that fit both feet, especially when I want something that will keep snow from falling in. I do own one pair of sneakers. I don't wear them particularly often because shoes hurt, but sometimes I need something sturdy enough to support my feet more than the other shoes and to protect me more and so I have these. They do lace really loosely and can tie without much pain on my left foot so it isn't so bad. They are the single pair of sneakers I've tried on in 5 years that I've felt comfortable enough in to buy. My husband balked at the $70 tag but they were a well respected brand and I knew they would last many years so I told him to suck it up. I still lament all my shoes. I owned dozens of pairs of high heels. (not exaggerating at all either) I owned more shoes than clothes I think.

I didn't think of this til now, but I should consider going back to corsets. I used to wear them all the time. It probably sounds stupid to someone who has never worn one, or never worn a properly fitted one. But a corset, when properly fitted, isn't painful or restrictive at all. As a matter of fact, it is the single most comfortable piece of clothing I've ever owned. I think it could be an option if I go with strapless ones. Of course, they are extremely expensive also.