I have had full body CRPS for about 50 days and been on Cymbalta and Lyrica for 28 days roughly with stellate ganglion blocks and 3 days of Ketamine thus far.

I was wondering if people with full body would walk me through how their symptoms progressed over time so I can gauge my own body's feelings with what is typical or normal here... I am unsure sometimes of whether I am doing well or poorly in terms of where my pain is now and how I'm feeling.

Hi there,

The spread of RSD/CRPS for me has been gradual. Dx in 2004. Awoke from back surgery screaming in pain in my ankle, foot and toes. After about a year and a half, with the help of meds, the pain subsided a bit and I also became more tolerant of the pain and yet hypersensitive to new pain all at the same time. I guess it was 2008 when it started slowly moving up my leg and into my theigh. By 2009 I could feel tingles of RSD in my other foot and toes. Mirroring pain was in progression. I guess it took about 18 months for it to be much more prominent in my “good” leg/foot. Then in 2010 the same tingles started happening randomly everywhere. Those tingles have turned into pain. My Fingers were first to let me know that it was going beyond my legs. For quite a while I had it pretty bad in my tongue and back of throat. My wrists and arms are now mimicking my legs. When all cylinders are firing, I will feel it randomly but consistently all over my body from the top of my head, to the tips of my fingers and toes. I have even felt the electric shock inside my body, my internal organs. Honestly when this happens I feel as though my body is a torture chamber. It happens at least once a month (without any additional stressers that might cue additional attacks) everything seems to go haywire.

I have noticed that I will have a couple of warning signs that it’s coming. Usually I will get bad anxiety attacks (my heart just flip flopping) and my eyes will begin to water and become more blury about 24-48 hours before everything is in full swing. Not always, but often.

I suffer daily with pain in my legs and feet, and several times a week with the random hits elsewhere. But when it’s on, it’s on, and there is nowhere on my body off limits.

I think everyone, from what I have read, is different. Progression or lack thereof is different for everyone.

[My first response to your having it for 50 days is that I am sure it seems like so much longer. One seems to lose track of time, days, months and then even years. It (RSD) determines so much in one's life and you learn to go places and do things with you have a let up, if only just a little.
Take advantage to get your mind off the pain, think about other things, if only for a few moments. The mind has to get some rest. It seems to be over stressed constantly, especially in the first months of RSD. I have suffered with it for 2 1/2 years and believe me, sometimes I didn't even want to talk to anybody or have a phone conversation with the best of friends. The first thing they ask is, "How are you?" And once you begin telling them, the disease flares up and you relieve the last horrible pain, by describing it.

Take your time, don't rush yourself to be what others expect you to be. For me, I needed some solitude, but I welcomed cards or emails from those who were thinking about me.

I was not a candidate for blocks or Lyrica, or any of the other usual medications because of my drug allergies. I was barely able to walk and developed severe hypertension also. I read a book that was about a treatment machine called VECTTOR by a Dr. in Texas and was thinking about going there for treatment. Not long after that, my husband was talking to someone about taking me to that clinic in Texas and that person knew someone else who'd gone there who had M.S. and that man came back able to drive again and run his business. I own a business myself, so that sounded good to me. I went and it's been 1 1/2 years now that I've used this VECTTOR machine and I believe it has helped me. I am not cured, but it helps with the pain, since I couldn't take any pain medicine.

I was wondering if you have any problems with high blood pressure? I developed very high blood pressure about a month after getting RSD from a shoulder injury. I am trying to find out how many persons with RSD develop high blood pressure too. Even though I take tons of medicine for the BP problem, it continures to occur in the 200's at times.

Warm regards,
Patience

It takes a lot of patience to live with RSD and that is why I chose that word for my user name.



QUOTE=getwellsoonerorlate;905607]I have had full body CRPS for about 50 days and been on Cymbalta and Lyrica for 28 days roughly with stellate ganglion blocks and 3 days of Ketamine thus far.

I was wondering if people with full body would walk me through how their symptoms progressed over time so I can gauge my own body's feelings with what is typical or normal here... I am unsure sometimes of whether I am doing well or poorly in terms of where my pain is now and how I'm feeling.[/QUOTE]

My RSD started in my left ankle and it pretty much stayed there for about a year and a half. When it got worse, my new doctor wanted to do a series of lumbar sympathetic blocks. The blocks caused spread to my upper body starting in my back, up along the spinal column to my neck, around to my front, to my shoulders, down to my arms and eventually ending at my hands. It's not FULL body I guess because my right leg is still in okay thank goodness. The spread occurred over 4 months.

When I experienced the spread I also began to experience a host of other symptoms at the same time which I now know are caused by RSD but didn't know at the beginning when it all started. My balance went all wonky (still isn't right), I had ringing in my ears, blurry vision, dizziness, nausea, couldn't sleep at all, had awful headaches, fast heart rate...the list went on and on. I was a real mess.

I don't know if that helps you or not. RSD really does impact us all differently. The hardest part for me was the getting bounced around by doctors with all my other symptoms as the tried to figure out what was wrong when it ended up being mostly just the RSD spreading (plus seratonin syndrome thrown in for fun causing hallucinations and fevers on top of everything else).

Hi Getwellsoonerorlate....

I have had RSD for going on 9yrs now... with full body spread.

I have to say there is NO TYPICAL OR NORMAL here. Everybody with RSD is different. I would say that no two of us have the same symptoms and no two of us react the same to the same medicines and the same treatments.

My spread was fast for what my doctor had seen. (I no longer see that doctor - he moved away) I have confirmed diagnosis of head to toe w/internal involvement. It took less than a year to spread this far. It recently spread to the back of my tongue and roof of my mouth.

You will find others with faster and slower spread.

I know it's scary but it looks like you are on a good treatment path.
I sincerely wish you the best.

Abbie

I was diagnosed in 92' w/full body RSD. CRPS title didn't come out for several years later..Still smile when I hear it called just want it is!

Anyway as the title states I was lucky to have found an RSD Dr that truly knew what he was doing. It took him a couple of weeks to get me Mobil as I had been bedridden for about 6 months then we did. The TP injection,epidermis, even discussed the morphine pump as the pain med I was taking just wasn't doing it.I was taking Studio spray but was needing more and more to the point a bottle was only covering 2 days! That is when my Dr switched me over to Buprenex inj. Now I truly hate needles to the point I had my 3 children at home because I hate needles! It took me 3 days of suffering intense pain before I would even try the Buprenex... Well long story short I was the Buprenex for 18 yrs. That's right for 18 yrs. I took between 5-10 injections daily to control the pain and I was able to function like a " normal" person, of course I had other med I took to complete the pain management plan my Dr created. I took the following; Baclofen,
Mogic,Trazodon, Lexapro.
And Buprenex.

If you are wondering why I am using the term " did & was" my Dr retired and his assocaite take he trained to take over his practice quit taking care of RSD patients and moved across the country leaving me in a horrible mess!
To date I have not been able to find a Dr that will even discuss much less consider my pm plan. The " pain Dr" I am seeing now will only prescribe the Butane 10 MCG/ hr patch and DULoxetine 30 mg.
It's been almost 2 months since I had my meds and the RSD is raising hell w/ my body! The migraines are back, extreme swelling in the feet and legs, burning/ tearing in the whole back area, severe atrophy in my legs ( I have lost 67 lbs). hypersensitive( feels like someone is pumping ice water in my spine) even though the is 80 temp and I am wearing winter clothes bundled up. I am sweating but the slightest breeze and I go in almost seizure shaking and jerking uncontrollable until I can get my body warmed up again. I haven't slept for more than an hour w/o having to get up and move.
Hopefully I will be able to find a Dr that does follow the Dr code "Do know harm!"

PS the doctor I have now just make a weird face when you tell her your symptoms and states if you don't like what she is offering go somewhere else!

I had my injury back in late July of 2014. I was diagnosed with CRPS in October. It started in one small circle on my right foot, and spread from there into my 2nd toe, rest of the foot, ankle, calf, knee, thigh, hip, left foot and calf, left thigh and hip, hands, arms, stomach, back, face and scalp, and chest. The spread within the foot is a little fuzzy, but the spread into ankle to full body happened in 4 months. My doctor says he's never seen it spread so fast or diffuse. He's sending me to more doctors to confirm the rest of the body spread is CRPS. Just a week ago, it set into my right hand, which now has the same intensity of pain as my right foot. I'm honestly not sure it's stopped spreading for me. The different areas of different types of pain - from intense burning and throbbing in my right foot to intense hypersensitivity in my face and trunk and everything in between. The constant pain is in my right foot and hand and by the end of the day, my legs and left foot will hurt and throb as well. So far, the rest of me isn't in constant pain - though is quite often uncomfortable - though I expect that to change in the future. Every week and a half since early January has brought some new Spread for me, either a new body part or a progression into abother "stage."

In the end though, no case is typical. They are all unique. And that's the worst part. No one can tell me if or when the spread will stop. It's not possible to know how bad it will get. I'm so sorry you are going through this as wish you all the best.

When YOU say full body what do u mean, what part of the body is this. I have had this condition now for 20 years, You are lucky u can pinpoint a DAY u got the full body all of a sudden. Mine was a very slow gradual thing and was a case of only one organ at a time. I have all sorts of treatments, conventional and not so much. The other thing is that we might all have a for eg a sore left wrist but we each have different pain, it reacts to hot differently we may react differently to exercise , some will need medication and others simple massage to help it. We react to the drugs different when they DO work but when we are allergic to them that is a whole new story, some can tolerate one drug and no so for others. I was told early on that if any aspect of RSD is detected in the first 2 years it is REVERSIBLE. So lots of tests, a lot of MEDITATION (so important) trials of drugs and treatments and therapies to help u reverse it. I am a firm believer of Distraction Therapy, Meditation, Relaxation (hot epsom salts bath with a splash of lavender is good) Different aromas have us reacting different with our moods, choose relaxing ones.

Its been a while now since u posted this so wondering how you are getting along now and is it still full body or is it just something else entirely lol