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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Sry to hear that you are having such a hard time with this.. adn you have come to the right place to find help!!

First Complex Regional Pain Syndrom is the same as RSD or Reflex Sympathic Dystophy. Not sure if you knew that or? What kind of symptoms are you having?? and what started the CRPS/RSD? (a surgery or fracture or?)
[COLOR=RoyalBlue]It started with Ptosis, left arm & leg numbness and tingling, Lots of Arm and leg pain - like it was between the muscle and bone, Temp. intolerence, Teeth hurt for days on end and bone loss and teeth shifting, Chronic Headaches , ear pain and hearing impairment, skin changes, visual changes with retinal holes and double vision, blurred and lose partial sight in left eye and many others I forgot[/COLOR]

[COLOR=Blue]Onset - I don't know, I went in for a gallbladder removal 3 years ago and I have never been the same. In Jan. I saw a Craniofacial Doctor (DDS) and Said I had TMJ, he fitted me for a splint, then off to PT I go and she found a Instability in my Neck said it was caused by an accident I had 18 years ago (I saw a Chrio for 2 years, but I don't remember anything about it), So back to the DDS and He says Blah Blah, you have CRPS and it is causeing the instability, so you need a Block. And Here I am. I have every test known to man. They were considering that I had possible MS, I have some odd ANA's, and Thyroid Disorder (which is under control), Here is an odd thing My Endocrinologist says that I am perimenapausal, but HEY! I am Lactating HUH??????????? I just had Bone Density and I have bone loss in Spine and Dental area.COLOR]
If you dont feel good about your pain mangagment doc and want a second opinion , go for it.. thats why there is more then one in your area adn your insurnace will cover it also. And yes a Pain Mang. doc is usually the one that diagnoses RSD/CRPS. They are trained better then the rest of the docs, like ortho's or primary care doc's or even neuro's. and PM doc's are the ones that treat RSD/CRPS and know how to treat it right (usually) there are some PM docs that arnt really up to par about the new treatments and everything.

Where do you live, maybe one of us on here can help you find a nother doc to see. we can post names and addys of the docs but not the phone numbers so hopefully we can help ya.
[COLOR=Blue]I live in New Mexico. This DDS says that there is NO ONE here. That he and his Son are the ONLY ones here that deal with the pain of CRPS[/COLOR]
Is the block on the 6th your first block?[COLOR=Blue]Yes and No - I have the option to change the Appt. to Block or Consultation! But Right Now it is just a Consultation[/COLOR] and did it take doc's 3 years to finnaly diagnosis your pain as RSD/CRPS or have they just delayed treatment?[COLOR=Blue]No, I just was DX'd 2 weeks ago, but have been on my journey since 2002[/COLOR] Because the sooner the diagnosis adn treatment, like with blocks, the sooner it goes in to remission and easier to get into remission. [COLOR=Blue]When do you know it is too late? after you get the block, when it does not work? are thier Physical signs it is too late?[/COLOR]

I have had RSD now for 3 years in my foot and leg and lower back and have 2 stims implnated and have had MANY MANY blocks and they only helped for a couple hours, but would kill for one now. [COLOR=Blue]So, the blocks don't work after a while? like you get immuned? How many have you had in the last 3 years? and of those how many worked?[/COLOR]

If you get into remision, your pain and all the symptoms will go away yes.. ad you will be back to your self again, but because RSD/CRPS is always gonna be there, it can come back at any time, like if you hit your knee on sometihng or stub your toe.. its that easy but there are many people that have gone into remision and have stayed there for years now.. its all unpredictiable and thats the other bad part of being diagnosed with this.[COLOR=Blue]I have read and heard that with CRPS that many people have had many Operations, why? Is it part of CRPS or Injury. I heard that some are having hands and feet removed due to CRPS, true? Does CRPS damage any type of tissue? and if yes, How? [/COLOR]

And yes it is very normal to be hit with depression when being diagnosed with this. and get treatment for this now before it gets worse. Because it will only make the RSD/CRPS worst. Stress and food and depression all make the disease flare up and we need to get help with that so it doesnt send us into more pain then we already are in!!!
[COLOR=Blue]Amber, thank you so much for your kindness. I really need to talk to Someone. THe whole family is falling apart. My husband is.....not himself and I am hiding from the kids. This is hard. I have to make a decision, soon, with not much answers. My DDS is not very helpful, all he says is "Go Research and I encourage a 2nd Opinion" Oh hell, I am lost. Thank you and I look forward to your response.
If you dont want to do the block yet, and wnat to get a 2nd opinion, call around to pain mang. docs and see when the soonest you can get in and tell them its for a sec. opinion and that he wants to do blocks asap and see if they can get u in with in a couple days to a week , just so you know that your doc is on the right track and so it will make you feel better also. Blocks arnt that bad of a procedure to have, adn ask for sedation it will be MUCH better and you wont konw whats going on, and hopefully it will put you into remision for good!!

Hope i have helped, and keep in touch and =nice to met ya!!

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