[Mycah]

If you have been diagnosed with RSD and did not have an obvious original injury/surgery/wound site, how did the doctor diagnose you (besides physical exam)? Was it through thermography, x-ray?

I have many RSD sx and my lower right back and abdomen has been burning for almost a year. I have/had a physical job so trying to zero in on a particular injury for me/doctor is difficult. Two years ago my right shoulder and hand were very painful but now, not so much in last six months.

I don't know how familiar my neuro is with RSD but I want to 'suggest' he try something if he needs my guidance (ha!).

Thanks for your patience and sorry if I'm beating a dead horse.

[bobber]

Hi Mycah
Unfortunately there is no specific diagnose {DX} for RSD, for which makes it hard for the patient to get the immediate care and correct essential care they despepertaly need.
The majority of DR's go by the patients outward appearance of the disease,they seem to want to see before they believe,,A good DR will pick up on it before the outward symptoms pop up,,its my opion thats ,that is when we need aggressive treatment,
There are people who have RSD that dont remember what caused it,,it has been noted that alot of time people do minor injuries that they dont remember because it wasnt a big deal at the time,Like twisting an ankle,for which is a very common way to contract RSD.
In my travels,,Ive found that ortho DR's are less informative of RSD than a pain management DR and at times ,better yet a Anestiologistis a good one to go to as well,,but as for a GP and a internist, and podiatrist,ive had no luck,,Your Dr can order alot of tests,[thermograpy,bone scans ,eeg,emg,mri e-rays,bloodwork to rule out autoimmune diseases ect,,,,but it is my opinon ,that at the end of the day,,He can DX you with RSD but another DR will say you dont have it,Because none of them are conclusive enough to DX for RSD,,,{ But all these tests will be accumulative over a peiod of time to help with the DX,,,,,,,,,back to square one,,there isnt one specific test to stamp on with two feet that this patient does have RSD,,,,and it is a stumbling block for us all,,crucial time passes by waiting to get a DX , or to get a DR on board to believe us and better yet,to know what to do about it and it takes a trained eye to recognize what stage your in to find out what will work for you,,But even if you see a real Good educated DR who knows RSD,,Not all meds or treatment will work for you,,It isnt a cookie cutter disease,,so Its a crapshoot on what will work for you,{ trial and error,,,},,,It is not uncommon for a RSD patient to have more than one DR,,it wont offend him to incorperate another DR,,most of us here have seen tons of them,,you need to find what works for you,,,If you are looking for a DX on paper in the DR;s dictation to have in hand,,,My choice is go to either or both a Pain management and a Anestiologist DR.....
I hope and pray that you dont have RSD,,burning back pain can come from muscle strain and tears,,And Im not telling you to dump your ortho Dr,but if you do have RSD,My gut feeling says you will be seeing a boatload of DR;s in the long haul,,,,,,best wishes,,,,bobber

[daniella]

Hi I did not have an injury either but have RSD and PN. It is very important though to rule out other conditions. I have had multiple mri,emgs,xrays I mean I could go on. Can you see a pain specialist/anestesolgist? What state do you live in? Maybe someone could suggest a pain doc who deals with RSD. If not I would call a major hospital or teaching hospital in your area there pain clinic and explain you have rsd and want to see if they have a pain specialist who deals with that. Have you had any blocks? Are you on any meds?

[Mycah]

Originally Posted by bobber

Hi Mycah
Unfortunately there is no specific diagnose {DX} for RSD, for which makes it hard for the patient to get the immediate care and correct essential care they despepertaly need.
The majority of DR's go by the patients outward appearance of the disease,they seem to want to see before they believe,,A good DR will pick up on it before the outward symptoms pop up,,its my opion thats ,that is when we need aggressive treatment,
There are people who have RSD that dont remember what caused it,,it has been noted that alot of time people do minor injuries that they dont remember because it wasnt a big deal at the time,Like twisting an ankle,for which is a very common way to contract RSD.
In my travels,,Ive found that ortho DR's are less informative of RSD than a pain management DR and at times ,better yet a Anestiologistis a good one to go to as well,,but as for a GP and a internist, and podiatrist,ive had no luck,,Your Dr can order alot of tests,[thermograpy,bone scans ,eeg,emg,mri e-rays,bloodwork to rule out autoimmune diseases ect,,,,but it is my opinon ,that at the end of the day,,He can DX you with RSD but another DR will say you dont have it,Because none of them are conclusive enough to DX for RSD,,,{ But all these tests will be accumulative over a peiod of time to help with the DX,,,,,,,,,back to square one,,there isnt one specific test to stamp on with two feet that this patient does have RSD,,,,and it is a stumbling block for us all,,crucial time passes by waiting to get a DX , or to get a DR on board to believe us and better yet,to know what to do about it and it takes a trained eye to recognize what stage your in to find out what will work for you,,But even if you see a real Good educated DR who knows RSD,,Not all meds or treatment will work for you,,It isnt a cookie cutter disease,,so Its a crapshoot on what will work for you,{ trial and error,,,},,,It is not uncommon for a RSD patient to have more than one DR,,it wont offend him to incorperate another DR,,most of us here have seen tons of them,,you need to find what works for you,,,If you are looking for a DX on paper in the DR;s dictation to have in hand,,,My choice is go to either or both a Pain management and a Anestiologist DR.....
I hope and pray that you dont have RSD,,burning back pain can come from muscle strain and tears,,And Im not telling you to dump your ortho Dr,but if you do have RSD,My gut feeling says you will be seeing a boatload of DR;s in the long haul,,,,,,best wishes,,,,bobber

Thanks bobber,

Yeah, I'm just wishing for that Good Dr who knows RSD.

I've had a colonoscopy, MRIs of brain and complete back, CT scan of abdomen/pelvis, EMG of arms/hands, eye test for Multiple Sclerosis, a lumbar puncture and extensive lab work. Doctors have ruled out colon issues, mini-stroke, multiple sclerosis, rheumatoid arthritis, lupus, thyroid issues and fibromyalgia.

My sense of smell/taste/sound is hypersensitive, thin and dry skin/nails/hair, night sweats, feet/hands sweating, feet/hands freezing cold, a couple of hand blisters, blah, blah, blah. In the last month my arms and legs feel as if they are burning and clothing hurts to wear. Certain foods/drinks are making my skin worse and am trying to avoid these with a passion.

I've seen two rheumatologists, four neurologists and a psychiatric nurse. Last week I started at a pain clinic with a board-certified anesthesiologist and he's working on some disc bulges with epidurals right now. He did say that if these don't work we'll start from scratch...next month. He did say to have my neuro look at the 'lesions' I'm having. Have a follow-up with my neuro tomorrow so I'm just trying to gear up for it.

Thanks for the straight scoop from your perspective.

[Mycah]

Originally Posted by daniella

Hi I did not have an injury either but have RSD and PN. It is very important though to rule out other conditions. I have had multiple mri,emgs,xrays I mean I could go on. Can you see a pain specialist/anestesolgist? What state do you live in? Maybe someone could suggest a pain doc who deals with RSD. If not I would call a major hospital or teaching hospital in your area there pain clinic and explain you have rsd and want to see if they have a pain specialist who deals with that. Have you had any blocks? Are you on any meds?

Thanks daniella,

Yes, all that other stuff has been ruled out (post to bobber). I live in Arizona and loretta from Arizona has been kind enough to suggest some things. I just started at a pain clinic last week and they are familiar with RSD. Began epidurals for neck and lumbar last week. No blocks yet.

The only meds I've been on are Lyrica (didn't help and stopped it) and Trileptal (helped with back pain but made me so stoned I couldn't function - stopped it, thought it caused the burning too but I'm still flaming). Psych people have tried three anti-depressants on me (pristiq, elavil, trazadone) and the only thing they did was make me burn more. I'm popping xanax a lot lately to help with back pain. Last time I saw neuro he said he wanted to try me on gabapetin (sp?) so I'll see what he has to say tomorrow.

I've learned that I'm not a very patient patient and want things fixed. And because sometimes it takes months to see specialists I like to have options lined up for the future.

Thanks again for your help.

[babs74]

wanting a quick fix is fine, but u hoping for a miracle hun.. we all do.. gabapentin works for some.. im allergic and lyrica works for me. most meds like lyrica and gabapentin u have to take a while before they work.. so give it time.. i hope u dont have crps like the rest of us. it sucks.. but if u do i hope u good treatment with the right drs..its going to be a long road.. so patience is something your going to have to learn. and we on here will all help you here. thats what we are here for.. anytime.

[keep smilin]

Originally Posted by bobber

Hi Mycah
Unfortunately there is no specific diagnose {DX} for RSD, for which makes it hard for the patient to get the immediate care and correct essential care they despepertaly need.
The majority of DR's go by the patients outward appearance of the disease,they seem to want to see before they believe,,A good DR will pick up on it before the outward symptoms pop up,,its my opion thats ,that is when we need aggressive treatment,
There are people who have RSD that dont remember what caused it,,it has been noted that alot of time people do minor injuries that they dont remember because it wasnt a big deal at the time,Like twisting an ankle,for which is a very common way to contract RSD.
In my travels,,Ive found that ortho DR's are less informative of RSD than a pain management DR and at times ,better yet a Anestiologistis a good one to go to as well,,but as for a GP and a internist, and podiatrist,ive had no luck,,Your Dr can order alot of tests,[thermograpy,bone scans ,eeg,emg,mri e-rays,bloodwork to rule out autoimmune diseases ect,,,,but it is my opinon ,that at the end of the day,,He can DX you with RSD but another DR will say you dont have it,Because none of them are conclusive enough to DX for RSD,,,{ But all these tests will be accumulative over a peiod of time to help with the DX,,,,,,,,,back to square one,,there isnt one specific test to stamp on with two feet that this patient does have RSD,,,,and it is a stumbling block for us all,,crucial time passes by waiting to get a DX , or to get a DR on board to believe us and better yet,to know what to do about it and it takes a trained eye to recognize what stage your in to find out what will work for you,,But even if you see a real Good educated DR who knows RSD,,Not all meds or treatment will work for you,,It isnt a cookie cutter disease,,so Its a crapshoot on what will work for you,{ trial and error,,,},,,It is not uncommon for a RSD patient to have more than one DR,,it wont offend him to incorperate another DR,,most of us here have seen tons of them,,you need to find what works for you,,,If you are looking for a DX on paper in the DR;s dictation to have in hand,,,My choice is go to either or both a Pain management and a Anestiologist DR.....
I hope and pray that you dont have RSD,,burning back pain can come from muscle strain and tears,,And Im not telling you to dump your ortho Dr,but if you do have RSD,My gut feeling says you will be seeing a boatload of DR;s in the long haul,,,,,,best wishes,,,,bobber

Bobber..

You did great...Kudos my friend..super explanation and I having nothing to add..but RSD is real!!!!!!

Kathy

[daniella]

Hi I am on neurontin and tried Lyrica but it was not good for me. Sometimes with me docs started me on too high of a dose and then I had bad side effects. For me it was better to start low and work my way up to high. I did that with Cymbalta and Serequel too and am still increasing neurontin. With each increase I feel bad but it wears off in a few days. I am glad you found loretta she is a gem and has a lot of good info. I hope your doc apt goes well.

[Mycah]

Originally Posted by babs74

wanting a quick fix is fine, but u hoping for a miracle hun.. we all do.. gabapentin works for some.. im allergic and lyrica works for me. most meds like lyrica and gabapentin u have to take a while before they work.. so give it time.. i hope u dont have crps like the rest of us. it sucks.. but if u do i hope u good treatment with the right drs..its going to be a long road.. so patience is something your going to have to learn. and we on here will all help you here. thats what we are here for.. anytime.

Thanks babs74. In my darkest painful days I have tried to think what lesson am I to learn of this...and what do you know, it always comes back to patience.

[Mycah]

Had my follow-up appt with neuro a couple of weeks ago and he finally put in my chart something other than possible generic neuropathy...small fiber neuropathy. When I brought up RSD he said RSD usually evolves from a crushing injury and follows a limb. I reminded him I have had a right burning shoulder for years and about a year ago my right hand was pretty useless (I'm right-handed). He mentioned gabapentin, Nortriptyline or Topamax as future drug possibilities.

I also reminded him I don't have a desk job but am a self-employed mobile dog groomer who lifts dogs constantly, have been bitten a couple of times, stands all day, holds a heavy blow dryer hose for sometimes hours at a time, do 90% of all the maintenance on my grooming van (mostly underneath the vehicle) and was a workhorse. He was facing the wall when he commented, 'you're a dog groomer?' At that point I don't know whether a light went on for him or if he was going to ask me for a business card - LOL.

Neuro wants me to finish up the epidurals with my anesthesiologist/pain dr before he sees me again. Unfortunately epidurals have not helped in neck or lumbar regions. I have a post-op with pain dr next week. I believe my pain dr has seen more RSD than this neuro has so my money is on him right now.

Right now I'm trying to research the difference between RSD and small fiber neuropathy, if there is any, so I can have some ammunition when I return to neuro later this month.

Thanks to all.