[Mslday]

I'm curious because I hear others here talk about the experience of pain jumping. I too have this happen - off and on.

In my case my rsd started in my left foot and fortunately for me my pain is still regionalized to my left leg despite having undergone a surgery to that my foot last year. The pain jumps for no specific reason along the left side of my body, my rsd side, mainly in my joints. Sometimes I experience a deep cold in the bone of my left knee and hip along with burning on my forearm and hand. It never lasts like the pain in my rsd foot does and there are no combining symptoms that would categorize this as RSD spread.

Does this mean that the rsd pain is spreading? When the pain shots from one area of the body to a whole new site it is very disconcerting even if it is not persistent. Personally I've learned that I need to be careful not to allow the fear of rsd spread rule me. A recent example of this fear was when earlier this week while having a lumbar sympathetic block the doctor who was standing in for my regular guy inadvertently inserted the needle for the sedation into my left hand. I never let anyone touch me with a needle on my left side, but because he was new to me I was totally distracted by the questions he was asking me. I didn't realize that he had set up the IV in my left hand until after the procedure was done and I woke up in the recovery room.

I had a slight panic attack when I realized what had happened, alluding to the nurse in a joking manner that I was about to start having psychosomatic symptoms if they didn't remove the needle right away. Everyone laughed and I left the hospital holding my hand...waiting to see if anything would happen. Nothing did. I'm perfectly fine. The big bad needle did not make my RSD spread.

I'm not suggesting that RSD spread is psychosomatic, please don't get me wrong. I know full well that many of you have fully documented cases of this disease spreading. I just always question what that means for those of us who don't have documented spread. As many will say here its important not to chalk up all symptoms of pain to RSD.

I'm just very curious about what it means for those of you who have total body rsd??? How is that pain manifested for you in other areas of your body from your original RSD site? Now that you have total body RSD are you able to find any releif, does the pain still jump or is it constant?

I have days when I feel my whole body shutting down from my RSD pain, my brain slows down and I feel completely exhausted and unable to function but I still only really have the pain in my left limb at the end of the day.

Despite having had RSD now for 7 years I'm still at odds with understanding what it all means. I'm not questioning anyone's integrity here just trying to seek more answers so I can understand what we are all going through better.

MsL

[love2laugh]

Great Questions !

I have full body RSD/CRPS, but mine did not spread in a conventional type sense. Mine has gone internal per say. It started in my legs after last two breaks (broke both feet/ankle twice) about 5-6 years ago and slowely began to effect my autoimmune system and body's abilty to regulate itself shortly there after. My leg pain was originally diagnosed as just allodynia/neuropathy. Then in 2008 I had abdomninal/pelvic surgery which caused the RSD/CRPS in my abdomen and pelvis and sparked a bunch of other problems. A very knowledgable, great Neurologist diagnosed that within 6 months of the surgery, and further diagnosed my legs several months after that. After the Pelvic Surgery my autonomic system completely went haywire. My body is unable to regulate its heart rate, tempature, etc.

Unlike a lot of people, I am not afraid of surgeries, needles, etc and it spreading. I've had 4 surgeries since the diagnosis, multiple injuries, countless needle sticks and, with my pelvis, injections directly into the RSD/CRPS site.

My main concern is when I get sick or have surgery or complications from my other medical problems, it can either 1) set off an RSD flare or, if I am flaring 2) trigger cluster seizures. Both of those can aggravate my other issues and its a vicious cycle.

Do I chalk everything up to RSD/CRPS ? No. Thats because I've learned and dealt with nerve pain and "regular" pain . When I made the mistake of getting back into gymnastics a few months ago and injured my feet was it RSD related ? Nope. It was a soft tissue/tendon injury. (It Did teach me that RSD/CRPS and gymnastics may not be compatable though ) . Is the pain I am experiencing in my ear right now related to RSD/CRPS ? Nope--- I had Ear Surgery last week. But, the RSD/CRPS is making the pain worse and its taking my body much longer to heal and recover.....

The frustrating thing about having internal/full body RSD/CRPS is that no one wants to take on the responsibilty of treating it all. So, I have to treat each body system with separate drs. Pain Management will treat the pain. Cardiology manages the autonomic Dysfunction. Neurology Manages some of my pain meds (because they are also used to treat my epilepsy). Gyn treats the pelvic problems and sometimes does injections. My PCM tries to keep me from getting sick (or does damage control when I get hurt, lol ) ....

Just my experience ....

L2L

[AintSoBad]

Hi MsL!
Great questions! Do you see a good neuro, who's knowledgeable with rsd? And, a PT doctor, is that what you're saying?

I see a good diagnostician, and, with this disease we almost Always need one, and that should be a Neuro. He should be seen as often as needed.
Then,
In my best experience, s/he orders shots, or psych, PT, whatever. (I don't have a lot of trust in Docs that diagnose/treat this particular disorder.) a different conversation, as there are many docs seeing this as a huge growth industry, for their small business'.

That was a close one you had there, with a different doc taking your care over!

To answer your first question, Yes, it absolutely sounds like you are experiencing some spread of the disease. That's the way mine did it. Now, the question is, what are you going to do?

I'm not a doctor, but by the excellent ones I have seen, It would be possibly some blocks (for dx only,) and light exercise / stretching, aqua therapy.

Ask your doctor..
Wish you the best.

pete

[Mslday]

Dear L2L and Pete,

Thanks so much for your reply and sharing your thoughts and your experience with RSD with me.

I don't have a doctor that really oversees my RSD in a holistic fashion either. I see my Pain Management doctor for my infusions and blocks. He is great but the bottom line is I need to get the last piece of metal out of my foot and he isn't good with stuff like that.

I've had a couple more LSB nerve blocks over the past month and that has helped but as you know they don't last. My Lidocaine infusions don't seem to produce the same magic response it once did.

Perhaps I'm putting blinders on but I don't think the RSD is spreading. At least I don't want to believe that it is happening. I don't have any of the other distinguishable signs of RSD in the other areas of my body where I feel the pain, no swelling, discoloration etc...

I'm working towards trying to get the last screw out but it is going to be tricky and I'll need to find a good team of doctors to help get me through it.

I still have hope and wish you both much peace.

MsL

[Jam Gem]

Hi,
I really was going to post the same question you did about the RSD spreading.
I also have RSD in my left ankle and lower leg but recently started having full body spasms and twitching and discoloration in my hands and tremors in my legs to the point where I feel like they wont hold me up sometimes.I then stated to experience burning pain that would jump around all over my body, even in my face along with my eye twitching.I am also wondering why that is?The Docs cant give me an answerfor the burning all over but put me on Baclofen for the spasms.I just started it so cant comment on its effectiveness.
I was also wondering if anyone experienced their pain coming in cycles.For example I consistently have 4 good days where I can sleep and my pain is very mild and then 4 days after where all my symptoms are flared up.Has anyone experienced anything similar?

Thanks
Renee