HI everyone, i am almost certain I have posted this before so forgive me but my spine burning is back with a vengence and severe swellling on left side of my upper back and now we can add the back of my neck. You can see the level of swelling with the naked eye the left side is almost 1.5" inches higher and red. It is definitely an RSD Burning.

You could draw a huge circle around from the neck over the left shoulder bone across the spine and up. Primarly on left side. This is my upper back not lower. I know my RSD is in my spine , it has been for some time, but what I want to know is if anyone else experiences this- I'm on the 5th day of it and I can barely lean back in a chair or lie in bed?? Please let me kknow if you have experienced this . thanks so much. CZ

Hi CZ,
I know exactly what you are talking about. Do you have a flat bed or an adjustable bed? If only a flat bed, do you have a recliner?
Going on with hopes of at least a recliner, this is how I use to ease the pain prior to getting my adjustable bed. Sit in the recliner with pillows under your feet to where they are raised at least twice the normal amount, place another pillow behind your knees so they won't get sore. Recline half way back with a travel pillow behind your neck. Place your arms down to your sides, close your eyes and take a deep breath in through your nose and slowly let it out through your mouth. Do that about 4-5 times. Then just sit there until your entire body feels completely relaxed and you don't want to move because you will spoil the nice feeling. If you don't have that feeling with doing only the 4-5 deep breaths, try it up to maximum of 6, you don't want to hyperventilate!!
Let me know if that helps you some. My prayers are with you!!

Love, Peace & Blessings,
Marla

Hi CZ,
Is it possible you have been bitten by something and have cellulitis?
1.5 inches higher is a huge amount of swelling for a localised area like that.
Can you go to the doctor? Maybe you need some antibiotics.
I realise that it is sometimes really hard to differentiate between painful and burning sensations when you have RSD but maybe this is a combination
Wishing you luck
Tayla

Thank you Tayla and Marla,
I did do the breathing and it certainly helped relax me thank you I am going to try to sleep that way tonight. Atleast to keep the pressure off my back. I sent a photo of my back to my doctor and it is an rsd flare . I know my next infusion will help get rid of the edema. I hate the spine pain-burning it is diffucult to ignore. I have had rashes , blotching , skin discoloration there ofter but this is the worst swelling and burning to date.Marla how long does yours usually last - is rest the only thing that reduces it, do you use heat ? Thank you again, CZ

Hi CZ,

I am so glad the breathing helped. Mine can last anywhere from 1 day to 1-2 weeks, just depends on the weather, my life stress level, and I have had it last up to a month before, but that was before I learned the breathing methods as well as the art of acupressure (not anything like acupuncture....no needles).

There are several places on your body that are pressure points that you can gently place your first two fingers on to help relieve the pain and help relax you. The best place I have found is the outer part of your left hand, where if you were/are left handed, that part that rests on the paper when you write....on the fatty part there, place your fore-finger and your middle finger there and gently apply pressure. I should say before you start this to sit in a comfortable chair or bed, close your eyes, do those same breathing methods as before, then gently apply pressure on the fatty part of your hand, hold it there and concentrate on your breathing and let your body totally relax.

You should feel some nice sensation in the area where the most painful area is, if it isn't as helpful as you need, take your fingers off then and re-apply with a little more pressure and then gently move in small circles until you feel totally relaxed and your pain has eased up enough for you to continue on with your day or to get a good nights sleep.

Give that a try and see how that works for you and let me know.

Much Love, Peace & Many Blessings to You!
Marla

Marla, we accidently found that pressure point while I was massaging my Husbands hand an few weeks ago! of ocurse I never thought of asking him to try it on me...lol. I get alot of burning pads there on my hands , again , from RSD so we applied my numbing gel, which helps alot with burning and set up to apply the pressure- it did help. at first it actually made the pain sharpen in my back. But then it began to relax. The swelling and burning is still there but alot ot the tension in the back released which is a big deal. I cant thank you enough . Also I was so surprised to see just how much pain and tension was in my left thumb /hand pad. Although there was soreness after- it was the good kind - if you know what imean. Seriously this helped alot- why does it help? I will be reading up online about the "acupressure". Thank you so much- anything else you have to help would be greatly appreciated- do you have a daily routime? streching, accupressure?? Please let me knwo if you feel up to it. Sicnerely, CZ

Hi Marla,

You seem to be well versed in pressure point therapy/relaxation techniques etc and have given wonderful advice to people. Was this your occupation before you got CRPS or have you done the study that will help yourself and others?
I notice you have a trade mark of RSD coach and was wondering if you having the disease gave you the impetus to train.
I do so admire anyone who is able to do this, I find that I can't even read a book past the first page
I would so love to further my studies and need lots of advice how to do so when my ability to concentrate has flown out the window.


Cheers Tayla

Hi CZ,
I am so very glad you had success with that!! It is so simple to do and does make such a big difference. I studied up on lots of different methods of acupuncture and so far have not been let down yet. Thank God!

That is so funny that you had found that spot on your husbands hand but never thought about having him try it on your hand. Crazy what we do for others and don't even think to try for ourselves huh?

"at first it actually made the pain sharpen in my back.But then it began to relax" Yeah, sometimes it will do that, especially on the first session, and sometimes on the second or third, but it does get better.
"Although there was soreness after- it was the good kind - if you know what I mean." I know exactly what you mean and yes ma'am it is a good kind of soreness, not too bad, just enough to let you know you have released the tension on that area and it is ready to get back to it's natural position. I love it.

"Seriously this helped a lot- why does it help?" It helps because your nerves are what sends the messages to your brain to read and process so if you are calming that nerve and redirecting the sensation or message, the brain reads it differently and ta-da....It is really that simple.

"I will be reading up online about the "acupressure". There are literally TONS of informational books, videos, cds/dvds, out there to choose from, personally I recommend going to your favorite book store like Hastings, etc., and picking up a chart that shows all the points for "Women", there aren't that many, it is growing, but still limited, or if you don't mind shopping online, here is a link to where you can buy one that is like the one I have. http://www.stressreliefproducts.com/...ence_chart.htm


"Thank you so much- anything else you have to help would be greatly appreciated- do you have a daily routime? I do have a morning and bedtime routine that takes about 25-30 minutes.
I have an adjustable bed which makes these really easy for me,
but after I do my morning potty call, and before I drink or eat anything, I get comfy in a reclined position, do my breathing exercises (side note: to keep your jaw from tightening up...slightly smile) , and I start with the top of my head; place you two fingers on the very top of your head for about 5 minutes, using the same technique as on the hand. (you might become a bit lightheaded, but it's ok, just concentrate on your breathing), then I move to the forehead; start at the middle (until you learn exactly where the middle is, use a mirror to find it on you), then gently (feather light) run your fingers down your forehead and off the tip of your nose and repeat that minimum of 10 times. Then I do the same on my chin, find the middle, and again use a mirror to find it first, then I do my hand as you did.

"stretching" After all that I very gently stretch my legs as much as possible while still concentrating on my breathing....then I flex my buttocks 10 times, then I take a really deep breath, hold it....and tighten my stomach muscles and arch my back; repeat that at least 6 times (you may have to work up to that), and then I finish it all off with my fingers back on the top of my head and relaxing my body and concentrate on my breathing for at least 5 minutes.

And I do the same routine at night after I have done all the potty calls, lights out etc., and sometimes I will listen to some relaxing music, just depends, but most times I just like the silence.

I know this is a really long post, but that's my daily routine. Give it a try and let me know how it goes. You are also more than welcome to call me, send me a private message and I will give you my number or I will call you, sometimes it is easier to do this if you are doing it while someone else is talking you through what to do, so if you'd like just let me know.

Love, Peace & Blessings,
Marla

Hi Tayla,

Thank you so much for you compliment, I appreciate it. My occupation prior to RSD/CRPS was at the hospital with the Lawyers, sort of like a Legal Assistant without the title...hahahahaha and had been doing that for 7 years and so loved it.
I have done my own studying on acupressure/pressure point therapy and relaxation techniques out of self preservation, I have always been of the mindset that I own RSD, RSD does NOT own me!!!! So I searched every avenue I possibly could, and I practiced so many different techniques, some good, some bad.

Then I studied with the International Association of Coaching online as well as going to seminars and became the first known RSD Coach™, which is something I am so very proud of. It took me a year to do it, but I have done it and I continue to learn because as you know, RSD is so different from person to person. But I spend one on one time with my clients for as long as they need me.

And yes ma'am, once I was diagnosed with RSD and found there wasn't much known about how to treat "It" or how to treat the "PERSON" suffering with it, I decided right then and there that I had to do something, so for 3 years I researched numerous options, including acupuncture, and then spent another year studying to become a RSD Coach™. And now I am starting my own Radio Talk Show, so hopefully the awareness will get out there and make RSD/CRPS as common of household name as bread!! hahaahaha

I have renamed what RSD stands for in my mind....Relief with Self Determination....because that's what it takes to be able to make it through most days and plenty of it.
You need a "Purpose"!! You have to have something that will drive you without having a cheerleader standing beside you egging you on. Know what I mean?
What is your Purpose?

Again, I Thank You so much, I so appreciate your kind words and let me know what kind of studies you are wanting to continue on.

Love, Peace & Blessings,
Marla

Marla, thank you so much for taking the time to answer each question I really really appreciate it. I wll begin working on learning your routine tonight and will pm if I am having any diffuculties. It is wonderful via tyalas' questions that I have found an RSD coach, thank you tyala! The path you have taken is so admirable -I do know the worst thing you can do is stress up, tightenup. close up- all the components of rsd just feed off of that- so embracing these techniques with the same determination as I do my clinical trials is my mission. thank you again so much. Ill be in touch. CZ