[Donna7]

Hello! I usually post on the TOS board; I asked some questions here a few weeks ago, as my doc thinks I may have CRPS II in the early stage, but didn't get much response, so thought I'd try again with just one question!

Can RSD/CRPS have a gradual onset? I have all the typical symptoms: burning, redness, warmth, allodynia, swelling, sweating...but they are all very intermittent. The allodynia only occurs occasionally, with one or two patches of skin that it seems to reoccur on. I've started Lyrica 75 mg 3xday, and since then I haven't had as much of the sweating and extreme warmth in the arm, but it does still feel like I have a bed buddy hanging from my shoulder sometimes. The hot/swelling/sweating started with one episode about 4-5 months ago, then came back with three more episodes in the space of one weekend...that was about 6 weeks ago, and doc started me on the Lyrica right away.

I guess I thought that RSD would hit hard and fast...not this gradual stuff...which makes me wonder if it's just nerve irritation from the TOS.

Okay, I'll try one more question: Doc wants to do a stellate ganglion block, but last August I had a fusion done with hardware at C5-7, which is exactly where the block is done. I'm not too keen on the idea of messing around in that area with a needle, which could introduce infection or something else. Anybody have experience with an SGB following cervical fusion with hardware? I asked my physical therapist about it today, and she was a little concerned, too...

Thanks for any advice that anyone's willing to give!

[trix]

I also have a gradual onset of symptoms of CRPS II. My Dr. at first told me that was what it was, but did blood tests to rule out anything else.
I got my results the other day, and my ANA and RF were elevated, and part of the rash I get is on my face, and my Dr. said that it was a classic Malar rash associated with Lupus.
This comes in conjunction with excruciating pain in my knees, hips and ankles. He said he is beginning to suspect that a lot of the problems I am having are auto immune derived.
He is sending me to a rhuematologist for a second opinion, and to dermatologist to get a biopsy of my rash.
Needless to say I am a little overwhelmed, and do not know what to think next.
I have decided to go to a Naturopathic clinic and see if they can help me at all. I am only 36, and I do not want to live like this anymore.
Tracy

Hi Donna,

So sorry you didn't get much response before, sometimes (not often!) we all seem to need to take a break at the same time...don't know how you slipped through the net...

I can't be much help on the blocks, but just wanted to say that for me RSD *was* hard and fast in the beginning; but it was brought on by injury. Others whose RSD started from different causes may well have a different experience.

And sorry to hear you're getting these problems, just FYI, there are other conditions with symptoms similar to RSD, here are some:
arachnoiditis, MS, some forms of diabetes, TOS (as you know), discogenic disease, deep vein thrombosis, cellulitis, vascular insufficiency, lymphedema, erythromelalgia (this one's so similar it may even be a form of RSD, research will tell eventually), Cauda Equina Syndrome....

Hope others can help more.
all the best

[Donna7]

Thanks to both of you for your replies! It's been hard to find much in the research about the onset...just the stages over weeks and months. I did have an injury from an auto accident nearly 5 years ago, which precipitated the TOS. Why this is starting now, I have no idea!

Trix...so sorry to hear about the Lupus. My sister had lupus. I've always feared it, because there's about a 30% chance of a close family member developing it. I hope you don't have it, or if so, that it will be relatively mild! It does go into remission at times, too.

Artist...I understand about needing a break...I do that from the TOS board from time to time, too.

Anyway, thanks again. I guess we'll see what happens over time!

[bassman]

And sorry to hear you're getting these problems, just FYI, there are other conditions with symptoms similar to RSD, here are some:
arachnoiditis, MS, some forms of diabetes, TOS (as you know), discogenic disease, deep vein thrombosis, cellulitis, vascular insufficiency, lymphedema, erythromelalgia (this one's so similar it may even be a form of RSD, research will tell eventually), Cauda Equina Syndrome....

Artist, you are right-on. I think I was tested for all of that before someone settled on RSD.

Donna, you can have onset either way, but the sudden seems to be the most common. The RSD can increase and decrease in severity over time. Its one of the reasons it is so hard to diagnose, and why sufferers are often believed to be malingerers. Hang in there.

Mike

[InHisHands]

Originally Posted by Donna7

Can RSD/CRPS have a gradual onset?

Yes, I had a gradual onset, and here's another story about that:

One morning in March, at the Nerve Injury Unit that Oaklander runs at Massachusetts General Hospital, I met an R.S.D. patient I will call Elena. She had entered the police academy in her home town, in western Massachusetts, at the age of forty-four, after bringing up several children, and she had been an officer on active duty for five years. During her spare time, she worked out, running and attending kickboxing classes for several hours a day, six times a week. One night in November, 2001, Elena had been patrolling bars in her town with seven other officers when a man with a history of assault-and-battery convictions punched one of her colleagues. Elena tackled the man. Then the other policemen piled on top of her, pinning her right forearm under the weight of their struggling bodies. Eventually, the suspect was subdued and handcuffed. Afterward, Elena recalled, “My arm felt heavy, as though I’d been working out at the gym with weights for hours.” For several months, the discomfort persisted, and she sometimes felt a tingling sensation. In late March, 2002, she awoke from a deep sleep convinced that her house was on fire: her arm was burning. Her hand was hot, puffy, and purplish-red, and the veins had swollen so much that they looked like fingers. “I thought they were going to explode,” Elena said. “I was so scared. It was as if I had the same pain as the night of the injury, and it had come back, only a hundred times worse.” After a few hours, the swelling decreased and the pain began to subside. Her doctor sent her to a hand surgeon, and when she arrived for the appointment her hand was freezing. She told the surgeon that when the hand was hot and swollen the skin was too sensitive to touch. “He just said, ‘R.S.D.,’” Elena said.

(story is from here: http://www.jeromegroopman.com/articl...n-remains.html)

Just my experience: I had an injury that caused the RSD in the autumn of 2005, and I had symptoms here and there, until it was full blown by the autumn of 2006 (and I was finally diagnosed)...

I had pain off and on, then my hand was changing colors/ going COLD, sweating terribly and then I started getting allodynia shortly afterwards. Until it was so full blown this past winter... and then the RSD spread to my other UE, and then I got it in both LEs and back. Swelling comes and goes for me, along with the red/ purple, cold/ hot extremities.


Hope my experience helps you out...

Sorry to hear you might have RSD...

I am sorry you didn't get much of a response last time. Ask any questions you need to! There are many helpful people here, and most of the time someone will have an idea or an answer for you!

[used to be]

Hello there...my rsd came on so gradually that I didn't believe the doctors when they told me I had it. Everything I had read said it came on quickly. Mine was caused by a broken ankle. I have all the symptoms but they came on one at a time. I hope you will get some relief from your symptoms. Sorry I don't know anything about the type of block you need but please don't let anyone pressure you into doing something you are not comfortable with. Take Care.

[Caladium]

I've been wondering about the onset of RSD/CRPS also.
This thread was very helpful.
Cala

[Donna7]

Thank you all very much for your replies. I'm so sorry, though, to hear your stories, and all that you have been through.

InHisHands, thank you also for the link...it was very informative and well written!

Things seem to be pretty stable at the moment, but I think if I see any worsening symptoms, I'll call for the block.

Take care, all...

Donna

[Imahotep]

Mine started slowly. I knew something was wrong right away but there was no pattern or ryhme or reason to the pain. I had lots of gastro-intestinal trouble at first and it was months before noticing that it was activity that led to pain. It took so long because I was extremely active almost every day. There was a little numbness at first and significant pain but the docs just kept telling me to ignore it. It got diagnosed six years later.

It rules my life and as you all know it's gets hard to keep going some times. It's fear as much as anything that's the big problem. The symptoms can be nearly intolerable and it's a wonder they haven't crossed the line but the fear they will soon be far worse is nearly paralyzing.