Not Raynaud's or Erythromelalgia

[Goldyukr]

I saw the vascular specialist again today and they did a test to determine for sure if I have Raynaud's. The doctor was as surprised as I was to see that after putting my feet in ice my blood flow actually increased to my feet! She says this means I don't have Raynaud's but definitely vessel wall instability. They are malfunctioning but in an unusual way - however they want to. She feels the source is the nerves supplying the blood vessels but since she can't define it has no idea how to treat it.

She did send me to the pain specialist the same day though and he has two ideas he wants me to choose between for the terrible pain I get in my legs. When I stand or my feet are down, they turn blue (unless the erythromelalgia-type reaction is happening, then they are red) and are very painful with tingling and burning. I sit with my legs up most of the day. Anyways, he would like to try either 'sympathetic blocks' or a ketamine infusion. Has anyone had either of these procedures done for this type of pain? Any thoughts or experience would be greatly appreciated.

Thank you!

[Ozchick]

I've had 2 nerve blocks a few weeks apart but made no difference pain wise. I have had Ketamine (not as an infusion but for pain relief) and I went off my face!! However that's my experience and it may well work for you.

[kel55]

Sorry but I dont get your doctors responce?

Hi, ganglion blocks are usually the last try to stop you being in pain after all else as failed and as we all now know Raynauds is microvascular disease meaning that there is a disfunction in the tiny vessels be it a chemical or physical reaction.

As she tried aspirin (makes blood less sticky, as does clopedogreal), isosorbide mono nitrate (opens the vessels), nitrate creams? and so on. What happens if you take codeine or morphine? these opoids are vasselators meaning they relax/open things up (veins as well as arteries) as well as dampen pain receptors and thus lower blood pressure. How is your blood pressure, if your BP is too high this forces the capileries to close, you would thing it was the other way around?

Im suposed to be having a ganglion block in a couple of weeks but thats after 5 years of trying other options, I may put it off because other things have been found to be wrong with me that may reduce some of my pains.

[Goldyukr in reply to kel55]

Thank you for your response. Sorry if it was unclear. So normally with Raynaud's putting my feet in ice should have significantly constricted the blood vessels and to some extent even in a normal person's feet. I'm not normal :-). My blood vessels opened wider. She says that my illness does not follow the usual pattern. They don't seem to constrict and overdilate as expected;' they are doing their own thing. I get both extremes - overdilated and constricted.

I am in pain all day. Tramadol helps and Gabapentin. However, I still have to have my feet elevated all day long. The pain management doctor says my symptoms are similar to CRPS which is why he is recommding these treatments, but the side effects sound very scary. I guess it's rare to have them very strong since they administer a very slow drip over several days. This is a very reputable clinic, Cleveland Clinic, in US so that does give me more confidence, but still... I am right now trying a cream with lidocaine. I have not tried opioids and don't really want to due to the addiction factors. My blood pressure is somewhat high now due to the prednisone (25 mg since April of last year).

I have been dealing with these health issues for almost 5 years. It took 3 until I started to even getting a diagnosis and any real help at all. Been on tramadol for a year.

[kel55]

tramadol is a synthetic opoid but it constricts, natural opoids are vasselators. perhaps you could choose when to take which one?

I have now had a stellate ganglion block (symperthetic nerve block in the neck) after a week l can say that my pain is greatly reduced only feeling spikes, even these are a lower intensity. My Raynauds is also greatly reduced and for the first time in over 5 years I had hot feelings in my rosey face, a sensation id forgoten. I hoping it will last but if not l will have it done again

[Goldyukr in reply to kel55]

That's fantastic news! They've offered to do that for me as well but the doctor recommended the ketamine infusion as the better choice. We are in the US though and I don't think we can afford it. The block I could do no problem. Nice to hear you are having positive results. I did not know that tramadol constricts. I will have to do more research on that. Thank you for the heads up! The problem is that my constricting nad vasselating are often non-predictable. Seems the underlying problem is the nerves and how they are communicating so it's not always clear when things will pop up but once they do I could try to use the appropriate medicine. Thank you for your input.

[Goldyukr in reply to kel55]

Found this interesting study that says tramadol actually decreases vasoconstriction? ncbi.nlm.nih.gov/pubmed/966...

[kel55 in reply to Goldyukr]

have a look here

ncbi.nlm.nih.gov/pubmed/218...

ncbi.nlm.nih.gov/pubmed/155...

I have micro and macro vascular disease, basically vascular spasms or to put it in simple terms: my vessels constrict cutting off blood to any down stream organs which includes the skin (raynauds) brain (small vessel disease) and heart (cardiac syndrome X) so knowing what constricts or vasalates is very important. I have always been told to never take over the counter drugs as most work by vascular constriction again most recreational drugs are constrictors (tramadol is used in a similar way to LSD). I take a lg dose of calcium chanel blocker and a lg dose of potassium chanel opener which helps nitrate uptake. Calcium ions constrict while nitrate ions vasalate. I am allowed to take paracetamol, asprin amd opiods but thats it, tramadol is on my nono list. I take daily aspirin as well as clopidodreal so l have to limit aspirin for pain, paracetamol infussion works well but for me paracetamol pill have little effect and just make me sweat. And if you havent already been told dont take grapefruit with these types of meds. Also becareful with weed (shows my age) while smoking it is a good vasalator but when you stop there is a large constriction or rebound spike!

[Goldyukr in reply to kel55]

That's really terrible that it affects your heart and brain. I'm sorry to hear that. Mine is in the legs primarily, though the overdilating happens also in my hands, face and neck. It seems that study you sent me affected the heart. Maybe that's why it doens't affect me that way - or also since I have both ends of the spectrum. Thank you for the good references though. I will keep them. I cannot do calcium channel blockers as they severely activate the Erythromelalgia and also myasthenia gravis type symptoms. We are all different, aren't we? It just takes time and a lot of trial and error to try and figure this all out.