RSD OF THE Cervical Spine!!!

[Rob123]

Hello everyone, I was just diagnosed with RSD of the cervical spine,does anyone on here have RSD in their cervical spine,if you do what is your symptoms? my symptoms are burning pain in the back of my neck and shoulderblades,and my skin is very sensitive to touch at back of my neck and shoulderblades,and my skin is reddish color at the back of my neck and shoulderblades area.

Thank You,
Rob

[daylilyfan]

Hi Rob

I saw that no one has responded to you, and thought I would welcome you to the group.

I am not sure that where I have RSD is exactly the same as what you are talking about. My first round of RSD was in my foot, starting in 2001. It s-l-o-w-l-y got better over about 4 years until the pain was about 95% gone. Then, I injured my left shoulder when I went to physical therapy about myofacial pain flaring up in my upper back from working to many hours at the computer on my job, and to many hours working in my garden. The therapist was testing my strength in my shoulder and had me move with my arm up and behind my back and something odd happened, and it has not been the same since -- RSD hit it immediately. By the next day my hand on that side was swollen, red and cold. It is now a year and a half later. The pain is back in my foot (another great indicator that it was RSD).. and the shoulder has spread from the joint to my upper arm, across my back to my other shoulder (not jumping, but spreading inch by inch across my back) up my left side of my neck to include some of my face, down my back to include my entire left side of my back, and my half of the right side of my back. However, the only thing that changes color is my left hand, which never hurts unless it gets really icy cold. But, my area between my shoulder blades and up to the base of my skull is really really painful.

So, I do have RSD in the area you are talking about -- but it was not the original area of RSD.

What has really helped me is going to a really excellent massage therapist - you need to make sure you go to one who knows (I will not be spelling this correctly) cranial sacral therapy. My therapist says that to do cranial therapy they need to have a certain level of training, more experience. NOW---- I am NOT saying this will be a wonderful experience - especially at first. I cried through the first few months of treatments. Even my therapist cried when she first was treating me... and she has known me for years -- she treated me when I had it in my foot -- but I am more than convinced she is the reason I am slowly getting better.

I went to a Dr. who worked for years with Stanton Hicks at Cleveland CLinic - he's a big guy in RSD research -- she was a really great DR. - if my insurance covered her now I would still be going --- she said that early deep tissue massage can prevent the burning and skin sensitivity. This is one thing I do not have - and did not have when I had it in my foot the first time. SO--- I think she may be correct. Since I have known this therapist a long time, and I go to her anytime I get hurt... she saw me almost immediately after I was injured both times - before any RSD type treatment was started.

As the therapy progressed, it became less painful. She works on the blood flow, the knotted muscles, etc. Many things. She did more for me than the Stellate Ganglion Blocks did --- that's why my pain mgmt. doctor discontinued mine, after seeing me the day after I had been to the massage therapist. He took her name and plans on sending future RSD people to her. At first, I went 3 times a week - and decreased till I now go every other week. Our goal is once a month.

My pain management doc is a bit different - he does a no opiate/narcotic route for RSD, which is not for everyone - but it has worked - I am slowly getting better. I do a lot of meditation.

I did get botox injections which relieved some spasms and improved movement and might help you if that is part of your problem. Botox for RSD is fairly new, but being used more and more I think. I also get trigger point injections. But I have had severe myofacial pain in my back and shoulders for 30 years. If you have not tried a course of steroids - a "dose pack" - I think mine was medrol? - that helped me a great deal when I first got this. I have done two rounds. Not shots, oral. It is an old time remedy for RSD. Years ago, they used to put people on long term low doses. My Rheumatologist (for the myofacial pain) recommended it.. and it did help.. and the relief was long lasting, it did not stop when the medication stopped.

Try not to stop moving, or do much guarding.... you'll end up with frozen shoulder... mine is half frozen on the left, and it is a royal pain not to have the use of your arm. I can't put on a coat right, reach up to put on a seat belt etc. So try to keep those muscles gently moving. The key is gently.

Jules

[Rob123]

Hi Jules, Thank You for the Reply and the Information,and I wish you the best in finding pain relief from your RSD.

Take Care,
Rob

[lobelsteve]

Hello everyone, I was just diagnosed with RSD of the cervical spine,does anyone on here have RSD in their cervical spine,if you do what is your symptoms? my symptoms are burning pain in the back of my neck and shoulderblades,and my skin is very sensitive to touch at back of my neck and shoulderblades,and my skin is reddish color at the back of my neck and shoulderblades area.

Thank You,
Rob

RSD of the spine is an unusual diagnosis. It is more likely incorrect as your diagnosis than many other things. Knowing nothing about you except some doc gave you that diagnosis, I'd challenge the doc. Many docs do not believe CRPS exists for the axial skeleton, but it is more an appendicular phenomenon that can spread axially. So many other disease processes can define your symptoms and are more common. Keep us posted.

[mbrfz]

Rob, you are not alone, I have full body RSD and have been diagnosised with cervical spine rsd. I have severe burning there, severe, breaks through oxy and percocet pain level when burning is a nine, and i frequently have a recurring rash on my back. diagnosis== pain rash. ITs brutal. I have all the nodes in my neck swollen and in the am must use both hands to lift my head. I also have frozen left shoulder. MY orgiinal RSD site was right ankel. My spine pain is shocking. Heat is my only aid and an numbing gel as well as meds. I do use a therapy pool which helps as you are weightless. great relief. But when it is in the cervical spine and forme also the thoracic spine it is some of the most dibilitating locations. Too much of any activity aggravates this area. YOu must do as little as possible. When it is out of control and I can ot hold my neck up my Doctor has given me a neck ring? Brace to wear to hold my head up. Just wanted you to know you are not alone. my best wishes for you. God bless. This is such a monster disease. Horrible. Take care.Mbrfz

[Rob123]

Hi Mbrfz, Thank You for the reply,and thank God that I'm not the only one with these symptoms.I wish you best in finding pain relief.

Take Care,
Rob

[daylilyfan]

mbrfz --- I also have an almost constant rash on my neck and the top of my shoulders. It is the only place that I get the rash. It goes right up into my hairline.

Heat is also my friend. I use various sizes/types of heat packs that you put in the microwave when I am at work. Depends on how heavy of one I can stand that day. At home, where I can be "plugged in" I use a regular electric one.

I also use a "bed warmer" which helps a lot. It is made to have more warming elements at the foot of the bed, because generally people's feet are colder. I have mine turned around so that area is under my shoulders. It helps a lot. That is sort of like an electric blanket, but it's under you. You can lay on your back, and the warmth radiates up through you. It does not get as hot as an electric blanket.

I find that there is a VERY fine line between not doing enough and doing to much. If I lay around doing nothing, I get stiffer and lose motion in my body -- but if I do even a tiny bit to much -- I pay for it big time. It is a constant balancing act.

I've told people before that having this RSD is like walking right on the edge of the Grand Canyon... with a 75 mph wind blowing in gusts. You don't know if it's going to blow you to the safe side or down in the hole at any moment. You just have to keep walking and not look down.

Jules

[mbrfz]

Jules, reading your post really helped me this am. Thank you. I am so sorry you are suffering with this so I don't mean that but to know someone else is having exactly the same manifestations as me is calming. I have a great fear that a horrible additional disease is in here with the RSD. I had not heard anyone else or read a post that someone had the exact problems that I do. You described it so well. the very fine line between inactivity and activity. So true. And the rules seem to change daily. What is not to much one day is too much another day.. its diffucult. Thanks again for posting.Let me know how it goes and if you find any additional relief. I will let you know if I get any relief from the HBOT treatment. Sincerely, Lisle

[alphacentauri855]

Hi..I have RSD full body and my worst pain is from my neck and shoulders and down my back. It hurts any which way I move..I would like to comment on the person that said "many doctors don't believe RSD exists for the axial skeleton"..it was not too long ago that doctors didn't even recognize RSD at all and some are still ignorant about it..I believe RSD can strike any part of the body, I know it has with me. Heat does help, but too much heat can aggrivate it as well..talk with your doctor about this and if he is not listening then find yourself another pain doctor..

[Rob123]

Hello, the person that said that comment is a pain Doctor and recently I was diagnose with RSD of my cervical spine,because of the burning pain and sensitive skin with reddish dicolor at the back of my neck and shoulderblades. Thank you for your reply and your comment,you sure stated your opinion. Thank You again!!!

Rob

[alphacentauri855]

Hi..I am very surprised to learn that this person is a doctor..I am puzzled at his response and quick dismissal of RSD of the spine..I would think as a doctor who is versed in the reality of RSD and the fight and years it took to get RSD recognized as a physical disorder, he would be more open minded and accepting RSD of the spine...Anywhere on the body is fair game for this condition..I have had RSD for 8+ years. I made it my mission to learn everything I can about it..It makes me sick to hear someone express that it is psycological or excuse it for something else..those with RSD know the distinquised pain that goes along with it. Pain that can not be mistaken for anything else..I wonder as to howthis person can be a member of a web site for RSD and then question as to how far and where RSD can and does spread...Go with what you know and don't let someone with doubts try and convince you otherwise...

A partner in pain
D..

[mbrfz]

Hi Rob, Im looking for the post referred to in your replies that said a doctor said rsd does not exsist in the spine. Just ridiculous. have them look up ketamine coma. those that have gone went when it spread to the spine as the pain was unbearable. Take care, mbrfz

[Rob123]

Hi All, The Doctor who stated the Statement also does answers questions on this Site and other sites.

Rob

[mbrfz]

do you know the memebers name? Thanks again, hope this finds you wll. my spnde has been on fire for the last three days rash is back. rough days. take care, mbrfz-

[Kiya]

My pain clinic doc also told me my RSD was in my spine (lumbar), not in my knee. It is also systemic.

[Sandel]

It is good to see you posting again.. yes LS is again expressing his doubts but look at how many of us have the same spinal pain.. I have felt that burn and I know the burn of RSD they are the same in my upper spine/neak as my other areas of RSD pain legs etc.

chin up bud and low pain days ahead I hope..

hi Jules hi all
hugz,
Sandra

[mbrfz]

Hi just saw this old thread, with the vascular problems that RSD causes, think of what that does to the c-pine and t-spine. Dr. Schwartzman has written a paper that the changes to the spinal column , as well as the cells in the spinal collumn can be permanent. If I can find that article I will post it. How are you doing Rob? Any improvement? mb

[Sandel]

Hi there mb I would realy apreciate seeing the artical as well my back has been bad since they did the blocks in 2006.
Thanks :)
Sandra

It seemes to me to center alot into my kidney area too..

[mbrfz]

Hi Sandal, yes I will look for the article now, I just saw this and will post for you. Im sure If I look long enough I will find it again. Im sorry to hear your spine is causing you so mcuh pain , I am oh so familar with this , daily burning to the extreme. I wanted to ask if you have ever had an Mri of the thoracic spine? thanks, mb

[mbrfz]

http://members.tripod.com/shariutter_gangel/id122.html
This is a start, not the one I was addressing, Im still looking. mb

[dreambeliever128]

I deal with the exact same symptoms of you and was diagnosed with RSD in my cervical spine about 4 years ago.

I was so bad yesterday with the pain that I was looking around the room to see who I could hit up for a massage. LOL Unfortunetly the ones that I knew would do it wasn't there. They were engrossed in a movie also so I didn't want to bother the others. The weather change and doing too much has sat me off. Also my purse. My Dr. lifted it one day and told me I needed to get rid of it but I can't seem to do it.

I know exactly what you are going through.

Ada

[Sandel]

Thanks alot Mb I hadn't read that one,
my back seems to be getting worse these days too.

I don't think Rob's been on here since 2007, though I am not positive.

be well
Sandra

[dlouise]

Hi, am new to this site and just figuring out how to manuever around. I have rsd from the tailbone up to and through the thoracic region. Stared with an injury from riding a recumbent bike. At one point rsd was also in face, arms and legs. Those areas have mostly retreated. Am interested in others who have it in my spine. Trust me, it is rsd. Responded to sympathetic block, originally had cyanosis in back and after several years have heavily grooved fingernails/toenails. Am interesting in corresponding with anyone who is dealing with the spinal areas. I know this thread appears old so am completely reachable at my email. Thanks for any info.

[Okla]

Hey Rob are you still going? I have had RSD of the Cervical spine which spread to other parts of my body. Eventually, I was disabled and in unimaginable pain. It just so happened that my sister had a computer topple over from the ground, it just fell over and hit her foot. It did not break anything it just pinched a nerve. Within a few days her foot was in horrific pain and she went to the doctor and ask for pain medication.

She had known the doctor for 10 years and had never ask for pain meds. So they x-rayed her and gave a script. To make a long story short eventually RSD set in and within 8 months they were considering amputating her foot. I'm not trying to be a downer, because she was at a pain management clinic. While there, a man walked up and ask her what she had. After she told him, he said that a POWERED MAGNET will heal that, and indicated that if she would agree to see him doing daily treatments for 1 month he would do them for free.

Within 1 month using an electro magnet, the RSD went away. Ok I had suffered with RSD for over 15 years, and had been labled a drug seeker early on, so I could not get any treatment. I called this guy and found out how to make my own magnet. Like in science class where you wrap a nail with copper wire? It's the same but on a bigger scale. The second that I turned it on, I felt the blood flow through parts that had not seen blood for years! It felt great.

It took me over a year, but I eventually returned to work. My sister had remained in remmission. Sadly, I was hit from the rear last year and the RSD returned, and seems to have adjusted to the magnet. I would try it though.

In addition, I use Iontophoresis, look it up in a medical dictionary. They sell personal units on E-Bay. When the arteries and veins are constricted, toxins build up and these treatments seem to help alot. By using them both I was able to be in remmission, sleep.. and live a normal life for a couple of years.

Now I find myself in the WAR again and need to find someone that knows something about this awful disorder.

Hope this helps.

Jeff Green
jgreen440@gmail.com