[sunnydee]

Hello All:

I've been going to drs for over a year and still don't have an official dx. My neuro wants to send me for Mayo because he thinks I may have RSD.

My problems started when I had a repetitive strain injury and in the following order:

pain, numbness, tingling in hands (both)
progressed to forearms (both)
mottled skin in both arms (shoulders to hands)
pain in elbows, moved up to biceps

Symtoms stayed there for approximately 6 months. Diagnosed with TOS (had chronic neck and shoulder pain for years). Immediately before first surgery, numbness in right foot started..

Numbness turned to pain, deep in the bone type pain
Pain spread up to right knee
Pain in left foot and up to left knee

Had second surgery (more major than first surgery). Since surgery a whole new set of symptoms appeared:

fatigue
migrane
insomnia
depression
pain spread up to right leg at hip joint
at times difficulty lifting right leg (as in climbing stairs)
difficulty concentrating
forgetfullness
vision trouble

I've been tested for RA, lupus, Lymes, Thyroid issues, diabetes, etc. - all negative. I was considering Fibromyalgia, but doc said no. I don't have the tender points. The reason I thought maybe Fibro is that my symptoms are so much worse during that time of the month.... Another reason it's probably not Fibro is that I'm able to exercise and not feel fatigued afterwards.

I also have an incredible stiffness in my neck, shoulders and upper back at times. Sitting for more than one hour causes pain and stiffness in my knees. The pain is sometimes prickly, sometimes like someone is sticking a thousand knives in you, and sometimes a deep in the bone pain. If something touches my arms, it can cause pain. I also sometimes have intense pain under my rib cage.

I don't have hair or nail changes, nor any noticable swelling. Does this sound like it could be RSD?

[hopeful]

Hi Sunnydee,
I have a lot of the same symptoms as you. I have also recently been diagnosed with RSD. It may be worth a trip to Mayo to be sure. Early treatment for RSD is suppose to be essential

[loretta]

Originally Posted by sunnydee

Hello All:

I've been going to drs for over a year and still don't have an official dx. My neuro wants to send me for Mayo because he thinks I may have RSD.

My problems started when I had a repetitive strain injury and in the following order:

pain, numbness, tingling in hands (both)
progressed to forearms (both)
mottled skin in both arms (shoulders to hands)
pain in elbows, moved up to biceps

Symtoms stayed there for approximately 6 months. Diagnosed with TOS (had chronic neck and shoulder pain for years). Immediately before first surgery, numbness in right foot started..

Numbness turned to pain, deep in the bone type pain
Pain spread up to right knee
Pain in left foot and up to left knee

Had second surgery (more major than first surgery). Since surgery a whole new set of symptoms appeared:

fatigue
migrane
insomnia
depression
pain spread up to right leg at hip joint
at times difficulty lifting right leg (as in climbing stairs)
difficulty concentrating
forgetfullness
vision trouble

I've been tested for RA, lupus, Lymes, Thyroid issues, diabetes, etc. - all negative. I was considering Fibromyalgia, but doc said no. I don't have the tender points. The reason I thought maybe Fibro is that my symptoms are so much worse during that time of the month.... Another reason it's probably not Fibro is that I'm able to exercise and not feel fatigued afterwards.

I also have an incredible stiffness in my neck, shoulders and upper back at times. Sitting for more than one hour causes pain and stiffness in my knees. The pain is sometimes prickly, sometimes like someone is sticking a thousand knives in you, and sometimes a deep in the bone pain. If something touches my arms, it can cause pain. I also sometimes have intense pain under my rib cage.

I don't have hair or nail changes, nor any noticable swelling. Does this sound like it could be RSD?

Hi Sunnydee,
I'm sorry for all that you are going thru. But a warm welcome to Neurotalk. You'll find it helpful to read a lot of the introductions of members. It will give you a broad spectrum of symptoms. We are all different and not all have all of the symptoms.
I got RSD following surgery. But wasn't diagnosed for 4 years.I was misdiagnosed and knew I didn't have RA, the tests were negative. I flew a couple states away and saw an orthopedic sports injury group. Saw the hand Dr. and said within one minute from walking in the room-RSD Had tests done at the hospital-confirmed. Started treatment and then came back to Arizona and saw neurologist who did more tests and confirmed-saw orthopedic hand Dr. who confirmed and started physical therapy. My left hand is partially paralyzed because of delay of treatment. Four years earlier, I got frozen shoulder following surgery. RSD used to be called hand shoulder syndrome.
The Cleveland Clinic is very well known for RSD -treatment good Drs. and surgery. Also Dr. Swartzman who is in Philly. Dr. Swartzman was one of the Dr. that was involved in a trial study for ketamine at the Mayo Clinic here in Scottsdale, AZ at Mayo Blvd. and 56th ST. Swartzman, Harbut, Correll and others did this study maybe about 10 years ago. There is a RSD conference in Greeville, South Carolina, Dr. Swartz is speaking. The Mayo here was involved in the study,but does not do the Ketamine like Philly. After the study was over, Swartzman, Harbut went north to Page, AZ to a clinic, then up to Philly.
The national organization RSDSA has a web page. You can put your zip code in there and you'll receive a phone number of support group member and name. At support meetings, you can get a lot of information about local Drs.
RSD is a autonomic disorder affecting internal organs that are involuntary. It affects the Limbic part of our brain, depression, speech slowness, memory recall, We sweat, We don't do well in the cold. Our circulation is affected. Depression is a symptom. Anxiety- is part of it. Stabbing pains is something I had. Burning pain,electric jolts, jerks, spasms.
Insomnia is something very very common. Sensitivity to touch or wind or clothing is huge. I went thru about 150 physical therapy treatments to get both shoulders that were frozen- back to nearly full range of motion. I also did massage therapy on my own. My hand therapist did desensitization, which was extremely important to get use of my limbs back. I did it at home also dailey. I took about 6 plastic bowls and put cotton balls in one, coffee grounds in another, popcorn kernals, rice, sand. Just gradually getting our limbs used to feeling different textures helps. I can no cut my own food, peel potatoes, etc. Therapy is difficult, I was given pain meds before treatment. Fourteen years later, I still stretch, and exercise. Swimming is one of the best ways to keep moving-Water needs to be 86 degrees. Walking, doing what we can helps to keep mobile.
Hope the best for you. Your friend, loretta soft hugs

[hope4thebest]

Hi SunnyDee,
Welcome to the boards and to the great people you will meet here, as I have.

You mentioned that you have been going to doctors for over a year without an official diagnosis. It is good that you are being referred to yet another doctor at Mayo, but I am concerned that treatment for the suspected RSD has not begun. Have you had any treatment, such as meds, physcial therapy or blocks, or alternative treatments such as acupunture, massage.

It is not advised to put ice on RSD sites so keep that in mind, or mention that to your doctors..

It must be intense for you to have developed so many symtoms over the year...I hope you are getting some help with the emotional side of pain mangement ..
Wishing you results in getting a definitive diagnosis soon ,and some relief on the horizon!
Let us know how it goes!
Hope4thebest

[daniella]

Do you live near Mayo? Since I lived out of state I sent them my records to see if they felt they could assist me. I have been to Cleveland Clinic and have mixed feelings but do know someone with rsd who has been helped. What tests have your neuro done? Did you have emg,mri'etc? Are you currently doing any treatment like meds,etc till you decide? I would encourage you to look into that as well. Also if you chose not to go to Mayo do you have a univeristy or teaching hospital near you?

[sunnydee]

Originally Posted by daniella

Do you live near Mayo? Since I lived out of state I sent them my records to see if they felt they could assist me. I have been to Cleveland Clinic and have mixed feelings but do know someone with rsd who has been helped. What tests have your neuro done? Did you have emg,mri'etc? Are you currently doing any treatment like meds,etc till you decide? I would encourage you to look into that as well. Also if you chose not to go to Mayo do you have a univeristy or teaching hospital near you?

Hi Daniella:

I live in the Orlando area, and Mayo is in Jacksonville (about 2.5 hours). Shands is a teaching hospital in Gainesville, which I have heard is good - but I don't know anyone who has been to either one... I'm hoping that at least one has a good neurology dept.

I had a EMG over a year ago ... (I thought it was carpel tunnel initially), but the EMG was normal. I've had several MRI's (brain, spine), and they were normal. I currently take Neurontin for the pain and I just started Seroquel to help me sleep.

[Checkmate]

You didn't mention if the pain was a burning type pain. That is usually pretty standard in RSD.

[sunnydee]

Originally Posted by Checkmate

You didn't mention if the pain was a burning type pain. That is usually pretty standard in RSD.

Sometimes the pain is a intense burning, other times it's a highly sensitized prickly pain, and other times it is a deep pain. It's mostly in my arms and legs and now my right pelvis area.

[daniella]

Hi. Like I said I have been to Cleveland Clinic,UCLA,the doctor for rsd on discovery health Dr carden in Ca. and then my current pain doctor in MI. He is out of a teaching hospital. It is a known hospital but not like CC. Anyhow I had called the dept and asked if they had someone who dealt with rsd a lot. They suggested him. Then I found out someone I knew saw him for rsd. He is better then all the others combined. I guess my point is and I am not saying not travel cause I still may one day but there sometimes is a good doctor near you.
My first emg/nc came back normal but my 2nd was the one that dx PN. They thought at one time I had tarsal tunnel which I do not. Just FYI you don't have to have all the symptoms to have RSD.

[nancyinLA]

hello, all! this portion of loretta's message:

RSD is a autonomic disorder affecting internal organs that are involuntary. It affects the Limbic part of our brain, depression, speech slowness, memory recall, We sweat, We don't do well in the cold. Our circulation is affected. Depression is a symptom. Anxiety- is part of it. Stabbing pains is something I had. Burning pain,electric jolts, jerks, spasms.
Insomnia is something very very common. Sensitivity to touch or wind or clothing is huge. I went thru about 150 physical therapy treatments to get both shoulders that were frozen- back to nearly full range of motion. I also did massage therapy on my own. My hand therapist did desensitization, which was extremely important to get use of my limbs back. I did it at home also dailey. I took about 6 plastic bowls and put cotton balls in one, coffee grounds in another, popcorn kernals, rice, sand. Just gradually getting our limbs used to feeling different textures helps. I can no cut my own food, peel potatoes, etc. Therapy is difficult, I was given pain meds before treatment. Fourteen years later, I still stretch, and exercise. Swimming is one of the best ways to keep moving-Water needs to be 86 degrees. Walking, doing what we can helps to keep mobile.

that's me.....i'm just 16 months out. started in my left wrist & arm - gone 2 my left foot. depression, speech slowness, memory loss....all of that!
and the most humiliating or embarr. is having my husband cut up my steak - or anything like that - when we go out 2 eat......
do people not understand???
SORRY, better stop the pity party! but i do understand everyone. wishing all of u a good wkend....