New Symptom - Bulging Veins?!

[JaimeS]

It's in the evening, @Eeyore, when it's worst, but it can happen whenever. Swelling doesn't seem to occur at the same time, though. Instead, I ache, at the hands especially. Like deep, muscular soreness.

-J

 

[Eeyore]

@JaimeS - That's a bit different from what I experience, so maybe a different cause. Mine seems to be orthostatic - my lower extremities are much more affected.

I do have carpal tunnel in my hands/wrists, but that's from use, and there is no associated bulging of veins. The more time I spend typing the more sore my muscles/tendons get in my hands.

 

[JaimeS]

I just got a job as an online TA, @Eeyore, so I feel your pain. Maybe my hands are just getting more use than my feet. It seems like the muscles in my hands and forearms ache all the time, now.

I need to stop writing the students essays when they ask me a question.

-J

 

[Eeyore]

It could be - or it could be some sort of vascular endothelial dysfunction.

I think we all share some common pathology, but I think it varies from one person to the next on finer points. I'm trying to think of how to approach your case diagnostically, but it's not simple.

I do think you sound like you have a lactic acidosis - you've had the right testing for that. I'm not sure how that fits in, or why you have it though. I am pretty sure I had it at one point and it lasted years, but then went away and did not return (although my CO2 does run lowish - around 2-22 - but not like it used to, which was about half that).

Systemic corticosteroids have the effect of reducing swelling and vasodilation in me - which is interesting, although not necessarily useful as a long term treatment. It's probably more useful diagnostically than therapeutically in my case. In general, I always do better on immunosuppression.

 

[JaimeS]

I think we all share some common pathology, but I think it varies from one person to the next on finer points.

...yeah. I think in many cases it's different primum mobile, same overall physiological endgame. Through the lens of our different genetics, temperament, and circumstance.

I went off the Vinpo tonight and replaced it with only gingko. No vein issues at all, but my head feels heavy and I feel uncomfortably dizzy. It doesn't appear as though it was the gingko in the formula that really helped with that.

-J

 

[Valentijn]

I just got a job as an online TA, @Eeyore, so I feel your pain. Maybe my hands are just getting more use than my feet. It seems like the muscles in my hands and forearms ache all the time, now.

Laptop use definitely triggers hand, wrist, and forearm pain for me. My wrists and fingers get swollen as well, though no bulging veins are involved.

It's gotten noticeably better since starting on antibiotics for Lyme and Bartonella.

 

[Eeyore]

@Valentijn - Do you mind my asking which antibiotic(s) you are taking?

Your pain sounds much like mine. I had some very specific markers for carpal tunnel (I forget the test they use, but you can actually tickle a nerve causing a reflex which shows median nerve compression - it's a weird test that only a few skilled orthopedists do).

I spend a lot of time at the laptop - it's my connection to the world. I'm right handed and my carpal tunnel is worse in that hand.

 

[Sidereal]

I had awful wrist pain recently due to spending too much time on the laptop. It got to a stage where I couldn't lift things with my left hand anymore. Boswellia serrata cleared it up.

 

[Valentijn]

@Valentijn - Do you mind my asking which antibiotic(s) you are taking?

Previously IV rocephine, IV azithromycin, and oral doxycycline. I'm currently on oral tetralysal and oral rifampicin.

 

[JaimeS]

Update: weird no-Vinpo symptoms seem to have cleared, but I upped my CoQ10 significantly, and took a B2 with cofactors. The B2 with cofactors was amazing, honestly. I think in a week or two I'll wonder how I got by without it.

No vein issues at all right now, but also the temperature has dropped dramatically in my area. I'll tell you how it goes once summer returns!

-J

 

[JaimeS]

...still vein issues, but now I only take the Vinpo if I'm having severe back-of-neck congestion, and that seems to help. Heat is definitely a big part of the problem.

-J

 

[Eeyore]

I can't remember now what the reason was that vinpo was supposedly concerning - but I could swear I read something about it. Maybe it wasn't a big deal... I just remember looking at it once and then deciding not to use it.

 

[leokitten]

@JaimeS just like others here within a couple weeks of getting ME I started having cardiovascular issues, including circulatory problems which caused significant and fairly rapid tissue and muscle loss all over my body. It wasn't due to deconditioning because as many know here I have milder ME and never stopped moving or working.

The problems included suddenly having bulging varicose veins everywhere where I didn't have them before. My extremities became more bony and started aching all the time, for months I got pins and needles in my legs and feet which in hindsight I know was due to tissue dying. I also got slight edema in my legs especially when I had to push myself and symptoms got worse.

My shoe size has decreased 2 whole US sizes because of the tissue loss. I've also had to have two surgeries related to the circulatory problems caused by ME/CFS, all in just under 2.5 years.

But I think people are mixing things up in this thread. When a drug or supplement is said to cause vasodilation that refers to arterial vasodilation, not venous. In fact when your arteries vasodilate this improves circulation and causes the venous system to drain better and your veins constrict and flatten. Small, flat veins are a sign of good circulation. And just the opposite, when your arteries are vasoconstricted, malfunctioning, and not providing enough blood flow your veins will become varicose and bulge because the circulatory system cannot push blood around as well and blood to the heart backs up.

My definite belief is that the varicose veins are due to this ME/CFS vascular/endothelial dysfunction Fluge and Mella have been seeing in many patients and are studying in the phase III RituxME triad as well as described in the paper from Newton et al. There is some major problem with our arteries not dilating properly and I do agree with Fluge and Mella I think this issue is causing most of our symptoms.

 

[JaimeS]

y extremities became more bony and started aching all the time, for months I got pins and needles in my legs and feet which in hindsight I know was due to tissue dying.

Terry's Naturally Healthy Feet & Nerves has really helped me with this one. This was my first symptom, and the first supplement I started taking - pins and needles feeling returns abruptly if I miss a dose, and there are... biological signs if it's getting too low.

But I think people are mixing things up in this thread. When a drug or supplement is said to cause vasodilation that refers to arterial vasodilation, not venous.

This article has two sections, one for drugs that are arterial vasodilators, and one for drugs that are venous vasodilators. It also states that many drugs dilate both veins and arteries.

Vinpocetine appears to be a phosphodiesterase inhibitor, according to this article. It functions by inhibiting the breakdown of phosphodiesterase, the enzyme that breaks down cAMP. This affects both the smooth muscle in the vasculature and the cardiac muscle of the heart, but to different proportions, so that the effect is that of relative arterial (in this case) vasodilation but increased cardiac output. This classifies Vinpo as an inodilator.

Vinpo also decreases platelet aggregation: a good thing for those of us with 'sticky blood'.

Summary:

Cardiovascular Actions of
cAMP-dependent PDE (type3) Inhibitors
Systemic Circulation

• Vasodilation
• Increased organ perfusion
• Decreased systemic vascular resistance
• Decreased arterial pressure

Cardiopulmonary

• Increased contractility and heart rate
• Increased stroke volume and ejection fraction
• Decreased ventricular preload
  (secondary to increased output)
• Decreased pulmonary capillary wedge pressure

A primer on Vinpocetine including uses and mechanism of action here.

...okay, I'm back to taking it. Damn, the back of my neck hurts and I can't think without it. Besides, my veins are still huge...

-J

 

[JaimeS]

I also was struggling with swifter HR than usual and not sleeping as deeply as usual, going to sleep later and waking earlier. This makes sense in the context of Vinpo's role as an inodilator.

One of those articles said vinpocetine had a half-life of 2 hrs, though, so I wonder if I could take a lower dose more regularly... it also said to always take it with food. On an empty stomach, the absorption rate is at about 6% - with food, 60%!

-J

 

[leokitten]

Just my opinion, but I tried vinopocetine and it gave me some weird side effects (which is rare for me because I don't usually notice anything).

There are a lot of other medications and supplements that do the same thing without these side effects so I'm taking other vasodilators.

 

[Eeyore]

That sounds very much like the mechanism of action of pentoxifylline. It's a non-specific phosphodiesterase inhibitor, so it raises cAMP. It's known to inhibit platelet aggregation as well, and is a rheologic (it improves the deformability of red blood cells so that they more easily travel through vessels).

@JaimeS - Have you ever had your fibrinolysis looked at, preferably off any meds that might affect it? Specifically, are your d-dimer, t-PA, and PAI-1 values normal? Also, do you know if your sed rates run high or low? (i.e. erythrocyte sedimentation rates)

Pentox (brand name Trental) is generally considered a very safe medication for long term use, is generic and cheap, and is available in time release versions - so it might be worth looking into. It shouldn't be too hard to get a somewhat open minded doc to write the script, but I'd check fibrinolysis and coagulation paramaters first for that too (as with vinpocetine).

 

[JaimeS]

Just my opinion, but I tried vinopocetine and it gave me some weird side effects (which is rare for me because I don't usually notice anything).

There are a lot of other medications and supplements that do the same thing without these side effects so I'm taking other vasodilators.

Not to encourage or discourage, but it gave me weird effects the first day or two I took it. I rode it out because I could tell it was doing what it was 'supposed' to. A weird tingle ran up the back of my neck and I was VERY dizzy for a bit. But since nuchal crappiness was why I'd chosen to take it, I persisted. I feel quite a bit less dizzy overall, but the first couple of doses were very odd.

-J

 

[JaimeS]

@JaimeS - Have you ever had your fibrinolysis looked at, preferably off any meds that might affect it? Specifically, are your d-dimer, t-PA, and PAI-1 values normal? Also, do you know if your sed rates run high or low? (i.e. erythrocyte sedimentation rates)

I know something is wrong along those lines, @Eeyore - I have a handful of incidences in my life where my blood wouldn't quite clot properly that were very worrying.

I have a SNP for a mutation re: Von Willebrand - but I had the blood test for that right after a bleeding issue and no dice. The mutation is uncommon enough that there is one study that even mentions it, on a chart, where they believe it has 'incomplete dominance'. Even so, if my blood levels are normal even right after a bleeding episode, it's unlikely it's to blame.

My SED is stupid-low, like it is in a lot of us. Probably not low enough for anyone but a very sharp physician to catch it or care about it. This, too, was part of the reason I turned to Vinpo.

I'd have to look at the Von Willebrand test, because as I recall, a number of clotting factors were tested. I'm not sure if that included d-dimer, t-PA, or PAI-1.

TL;DR - there's something wrong in this arena, but I haven't pinned it down, yet.

-J

 

[Eeyore]

d-dimer, t-PA, fibrinogen, and PAI-1 are actually more accurately described as measures of fibrinolysis - which I believe is abnormal in ME much more often than coagulation. (The latter is the formation of clots, the former is their degradation - both can present clinically with a bleeding diathesis, but the former is usually milder.)

I think you might be abnormal on thes as you match me on a lot of other things (low CO2, very low ESR, POTS, swollen veins in my feet / lower legs, acute onset, age of onset, etc.

Reduced fibrinogen is likely the cause of your low ESR, which is a result of hyperfibrinolysis degrading fibrin very rapidly. It's sort of a low grade DIC.