[cyclist]

Hi gang,

Since July of this year, a few doctors have mentioned that I might have CRPS, or perhaps an overactive sympathetic nervous system. In general, I don't have many of the typical symptoms.

But, along with significant pain in my hands, I do get episodes of severe swollen/bulging veins on the tops of my hands. Are bulging veins a sign/symptom of CRPS?

Would really appreciate any input!

[zookester]

Originally Posted by cyclist

Hi gang,

Since July of this year, a few doctors have mentioned that I might have CRPS, or perhaps an overactive sympathetic nervous system. In general, I don't have many of the typical symptoms.

But, along with significant pain in my hands, I do get episodes of severe swollen/bulging veins on the tops of my hands. Are bulging veins a sign/symptom of CRPS?

Would really appreciate any input!

I would recommend seeing a vascular surgeon who can do a doppler ultrasound study of your neck and brachial plexus.

[cyclist]

Originally Posted by zookester

I would recommend seeing a vascular surgeon who can do a doppler ultrasound study of your neck and brachial plexus.

Thanks so much for your response. I had a duplex ultrasound which was normal at rest but showed positional closure of subclavian vein. Then had positional/dynamic venogram which was completely normal. Not sure I understand how/why the two could differ so much. And, neurogenic TOS doesn't explain the hand pain (deep ache w/ severe flareups). This is probably the only thing that numerous TOS docs do agree on.

So, folks keep suggesting CRPS. Sounds like you do NOT think bulging veins is a sign of CRPS ??

[zookester]

Originally Posted by cyclist

Thanks so much for your response. I had a duplex ultrasound which was normal at rest but showed positional closure of subclavian vein. Then had positional/dynamic venogram which was completely normal. Not sure I understand how/why the two could differ so much. And, neurogenic TOS doesn't explain the hand pain (deep ache w/ severe flareups). This is probably the only thing that numerous TOS docs do agree on.

So, folks keep suggesting CRPS. Sounds like you do NOT think bulging veins is a sign of CRPS ??

As far as CRPS goes - you really haven't given much info except the bulging veins so if that is all then no - I doubt CRPS but.. then again I'm not a doctor just another CRPS II patient.

However - I also had bilateral Vascular and Neurogenic TOS prior to CRPS II so I am a familiar with that through personal experience. I had both first rib resection and neurolysis done within 20 days of each other by a fantastic doctor in Seattle (Dr. Mark Ombrellaro) and have had no further symptoms since them moment I woke from surgery. I am forever grateful for his quick and accurate diagnosis and expert surgical skills.

It does sound more like V- TOS than CRPS from what little you have posted. Do your arms and hands turn white/cold when raised at keyboard or steering wheel level? And then when you lower them they quickly turn bright red with the feeling of blood rushing back into them? The deep aching could come from lack of blood flow as this will impair bone resorption and potentially cause bone pain and changes within.

[cyclist]

Originally Posted by zookester

As far as CRPS goes - you really haven't given much info except the bulging veins so if that is all then no - I doubt CRPS but.. then again I'm not a doctor just another CRPS II patient.

However - I also had bilateral Vascular and Neurogenic TOS prior to CRPS II so I am a familiar with that through personal experience. I had both first rib resection and neurolysis done within 20 days of each other by a fantastic doctor in Seattle (Dr. Mark Ombrellaro) and have had no further symptoms since them moment I woke from surgery. I am forever grateful for his quick and accurate diagnosis and expert surgical skills.

It does sound more like V- TOS than CRPS from what little you have posted. Do your arms and hands turn white/cold when raised at keyboard or steering wheel level? And then when you lower them they quickly turn bright red with the feeling of blood rushing back into them? The deep aching could come from lack of blood flow as this will impair bone resorption and potentially cause bone pain and changes within.

Thanks for sharing your experience. I've come across 2 other TOS patients who also had a successful outcome w/ Dr Ombrellaro.

As for my bilatral hand symptoms...
I do NOT have: swelling, burning pain, sensitivity to touch, color changes, abnormal sweating, stiffness, changes to skin or nails, or an abnormal triphasic bone scan.

I do have:
-- severe aching pain
-- periodic bulging, distended veins on the tops of my hands
-- extreme hand coldness w/ any aerobic activity, including just brisk walking. After such exercise, hand pain symptoms are greatly exacerbated later that evening and for the next few days. (In bed for roughly 3 days w/ round the clock opiods.)

Arterial blood flow through the hand is normal at baseline and also immediately post-exercise when hands are ICE -cold. (was tested) Docs are saying that the sympathetic nervous system is activated on exercise, and it's cutting the blood flow to skin cells only (explaining coldness) and it's the sympathetic nervous system that's also responsible for the increased pain flares post exercise as well has the constant ache.

Personally, I think it's a local venous return issue that is exacerbated by increased blood flow, but no doc is willing to test this. They just tell me to see a CRPS specialist.

Any thoughts??

[cyclist]

Forgot to add - no changes in pain or coldness w/ hand positioning.

[zookester]

Originally Posted by cyclist

Forgot to add - no changes in pain or coldness w/ hand positioning.

Have you had a complete workup for your heart; including stress test?

It actually sounds a bit more like Peripheral Vascular Disease one that comes to mind can be found here: http://en.wikipedia.org/wiki/Thromboangiitis_obliterans

I would seek another opinion for a peripheral vascular surgeon and a Neurologist with peripheral nerve sub-specialty. Have you considered flying to Seattle to seek care from Dr. Ombrellaro? He truly is worth the cost.

[Russell]

Originally Posted by cyclist

Hi gang,

Since July of this year, a few doctors have mentioned that I might have CRPS, or perhaps an overactive sympathetic nervous system. In general, I don't have many of the typical symptoms.

But, along with significant pain in my hands, I do get episodes of severe swollen/bulging veins on the tops of my hands. Are bulging veins a sign/symptom of CRPS?

Would really appreciate any input!

My veins go both ways. Sometimes they even seem to flatten or disappear. Then there are times when they become swollen and turn blue and black in color. I've been told it's due to over or under active nerves. Yes it's a symptom of CRPS...

[cyclist]

Many thanks to you both for taking the time to reply.

Russell - I have also been told the tone of the veins is controlled by the nerves that run right along side them. Sometimes the veins are bulging quite significantly and sometimes I wake up in the middle of the night (b/c of pain) and the veins are flat, but very blue. It's as if I can see every single vein in my hand...somewhat bizarre.

Zookester - thank you for the suggestions. I've seen a peripheral nerve specialist that I have confidence in --but I think an opinion from another peripheral vascular surgeon is a very good idea. I will follow-up on that. And, I am interested in learning more about Dr Ombrellaro. I"m going to send you a PM and I hope you might be willing to share some more info about your experience with him.

thanks again!

[cyclist]

Just read that.... venous pooling in the hands (showing as bulging/distended veins) can result from impaired sympathetic vasoconstriction. Seems to argue AGAINST an over-active sympathetic nervous system or some variant of CRPS.
Nonetheless, I have had 5+ doctors suggest this...and refuse to do any other vascular diagnostics.

If there is someone out there who does have CRPS and this symptom of bulging/distended veins in the hands, along w/ very painful hands, I would really appreciate hearing from you, and learning more. Right now...having a hard time being convinced....