My CRPS was like...
 

Those symptoms come and go for many of us. If your doctor has not seen you at your worst, you can either make an appointment to go in the same day just so he can make a quick note or you can take pics and show him. At the point that your doc is confident of the diagnosis, it doesn't really matter.

I have begun taking pictures of my foot's reactions (post surgery for 6 months after cortisone injections), doctors find this helpful as I still don't have an official diagnosis but am leaning towards mild case of CRPS, going for bone scan on Friday.

hi always. i think pictures are good to take too because some rsd symptoms come and go. it is strange how they sometimes seems to go when its time for a follow up with the doctor but it does happen sometimes.

I had a doctor say I don't have RSD because in the ten minutes he spent with me, my arm wasn't "discolored enough". It was discolored, purple/blue, blotchy...but not enough. WTF does that even mean?

For some reason, my arm/hand get more discolored as the day wears on. The later the day, the more discoloration. The cooler the weather, the more discoloration. The more discolored it gets, the colder my arm feels.

Does that happen with you too?

Yes, it so frustrating when this happens, so it is a good idea to take photographs so you have visible proof. In the winter my right leg and foot were red most of the time, but now that the weather is warm, the purply red only appears when I walk, so if I was seen sitting my ankle would be swollen, but my foot and leg might not be red.

There are lots of misperceptions about CRPS. In March my presentation was casebook. No one could touch my foot. Now there is less pain, but putting certain socks on kills me and wearing shoes is torture. I also had laser hair removal years ago, so excessive hair growth as another symptom isn't possible.

The patchy osteoporosis in my foot and ankle on a May X-ray when it wasn't there in the October xray confirmed the diagnosis.

rsd symptoms can come and go and change each day. just because symptoms aren't always there doesn't mean it's not rsd. and rsd can spread to other parts of the body without having all the symptom that you initially had. some drs think that if you don't have all the symptoms all the time that its the rsd is going away or is not spreading. that is not true but unfortunately some drs don't know this because they don't educate themselves enough on this disease. you just have to learn to trust you instincts and listen to your body. you know better then anyone what is normal and what is due to rsd. and finding a good pm dr and neurologist that know rsd helps also. soft hugs to all.

it takes time to get to know how to understand and manage your rsd pain. be patient with yourself and take it a day at a time because each day with rsd is different so you won't know what you can do each day until it gets here. i learned that overdoing it on a day that i'm having a low pain day isn't always good because i pay for it with horrible flares for days after. so i try to pace myself even on low pain days as well as high pain days. in time you will learn how to avoid flares to a certain extent. sometimes flares happen even when you don't overdue it. weather can cause flares, rsd spread can cause flares and getting other diseases due to our weakened immune systems from rsd can cause flares too i.e. fibromyalgia, arthritis, osteoperosis. when flares happen that are out of your control. continue taking the pain meds your dr prescribe and have an emergency rsd flare kit. mine includes heating pad or blanket, lavendar epsom salt baths, tea, cookies, a comedy on tv for distraction while i lie down to rest until the flare passes.
p.s. i have had rsd for almost five years now and though i have learned alot on how to manage my rsd pain i am still learning every day how to deal with it due to spread i am getting from it. i just keep taking it a day at a time. soft hugs.

people who take pain meds to help manage their pain are not addicts. they just have a tolerance for the meds. addicts are people who take pain meds to get high. so if you need to find a pm dr who will prescribe pain meds to help manage your chronic pain from rsd then that is ok (at least to me and the many drs I see). some drs don't like prescribing pain meds because of all the strict regulations on the meds. i think it's too much hassle for some of them and some drs just don't understand how painful rsd is and how to properly treat rsd i.e. with pain meds and anti depressants. i'm not saying your drs are like this, but if i were you i would try to find a neurologist or pm dr who really knows what rsd is and how to treat it properly. pain meds are not the only answer to managing rsd pain, but it has helped me out alot. pt, nerveblocks, tens units, accupuncture (not for me caused spread for me) and scs (not for me just yet using as a last resort), calmare treatments, ketamine infustions and HBOT. if if were you i would check out all the info you can online about rsd too as well as on this forum to help you to understand your options better. knowledge is power my friend. soft hugs.

I fully agree with you and I know that's the way it is taught in medical (in my case, nursing) school. However, with the stigma coming from the FDA, that is how those with chronic pain are viewed. So I have my hoops to jump through. I think my neuro is pretty on top of it. Disgusted with PM and I've only seen the ba$t... once. I've done accupuncture for endometriosis years ago - didn't obtain results. Because I worked for a PM group, blocks/trigger points pretty much scare the hellouta me. My son had an intrathecal pump...he had more complications than I am comfortable with. Just beginning to learn about calmare/ketamine. Studied HBOT 15-20 years ago for my son...I'm pretty neutral about it as the results I have seen/read are pretty iffy.

I've been the gaba route - twice - and have an extra 40 pounds from it. I was on welbutrin (for smoking cessation) but insurance won't cover it anymore and it's not the right antidepressant for RSD. Just picked up amitriptyline but I don't have a pill splitter that hasn't been used on my dogs phenobarb, so I haven't started it yet. I swear if I gain 1 friggin ounce on that, it's not happening..at 5'1", I don't have a lot of room to grow out anymore. :eek:

I'm so grateful I found all of you!

Ugh, it really bothers me that all this time you have been posting you have had no good pain relief options. The whole point of pain relief besides comfort is reducing centralization. Will any of these docs at least give you some tramadol? It is less narcotic-ish and works well for some. Though not addictive it does require a taper though for safety if given more than a few days. but you probably already know that...

FYI - ami has the highest side effects in that drug class since it is first gen. I take nortriptyline, less side effects and I do find it helpful.

:hug:

I can't take tramadol (was on it for my endo - didn't touch it and gave me awful GI upset) and with all the ibuprofen I have taken over the past 18 months, my stomach is over it...I'm on prilosec now because of constant heartburn/nausea/vomiting. NSAID's are not in my future. :(

I had fair relief while under my last ortho's care. Alas, I consumed my last lortab in November (from a script written for 50 tabs in August)