Questions on Cholesterol and EM

Does anyone have information on the link from high cholesterol to EM? High cholesterol is listed as a possible underlying condition for EM in some articles such as "A Case of Inherited Erythromelalgia" by Waxman and coauthors, and also on several webpages. However, no details are provided as to how high cholesterol might lead to EM.

Any ideas, speculations or wild theories are welcome! Perhaps, answers may be found in "Secondary Erythromelalgia" by Naas but I have not yet been able to obtain it.

My interest is due to the fact that I have familial hypercholesterolemia, which in my case means my liver produces to much cholesterol. Recently, I changed to a vegan diet but medication may still be necessary.

Greets,

Ben

Thanks, Tizzy,

I will put the Doppler ultrasound on my to-do-list for doctor consultations and hospital visits. Thanks also for your input on PAD and EM, and for pointing out the differences between the two. Given that high cholesterol is fairly common but EM is extremely rare it would defeat logic to say that one always causes the other. But maybe high cholesterol only causes EM in the presence of other factors. Here, I'm of course speculating...

Greets,

Ben

Tizzy said:

Interesting - I am always up for a bit of speculation.Lets see, high cholesterol can lead to deposits in peripheral arteries and cause peripheral vascular disease. Symptoms of which are pain when walking ,cramping and sometimes burning. Now the the but - cholesterol hardens artery walls making it difficult for them to vasodilate, while Em can cause a huge increase in blood supply to the affected limb and actual appreciable ,measurable temperature increases. PAD is also relieved by rest BUT not by elevation,in fact I have seen patients dangle their feet off the bed in hospital to get relief from cramping. So ,as a guess I think probably not, but if I had a family hisory of high cholesterol and EM I would still think about futher tests on peripheral blood vessels, but I am just playing pretty much a guessing game here .....you did mention I could ;) Tizzy
Ps Doppler ultasound is probably the test to show if blood is flowing smoothly in peripheral vessals

Hi Ben.

I don't have the best nor the worst Cholesterol. I have seen my test results and it is getting up there but still in the normal range. I have had the ultrasound on my legs and arms and they say all looks great. I had this done after multiple unexplained blood clots but alas we cant blame my veins them selves.

I love Tizzys input. Based on her info it seems not but this EM is a strange bird and I am not sure if any cause can really be ruled out.

Take care,

Alina

Hi there :slight_smile: I’ve had high cholesterol since I was a child (thanks, genetics), but, strangely enough, I didn’t develop EM until I got my cholesterol into the normal range after starting lipitor. I don’t think there’s a connection between the lipitor and the EM since it didn’t start until about right months after going on lipitor. Anyway, count me in the “nope” column on the cholesterol theory.
Also, I’ve also had my legs and arms dopplered in the investigation of this EM (a vascular surgeon was the first doctor to suggest I had it), and all was normal.

Dear Ben,


Secondary EM has been reported following the onset of rosuvastatin use and associated myopathy ( statin lipid lowering agents are largely known for their potential myopathic toxicity. Have you myopathy (muscle weakness)? Do you take statins? If you do then you may find that, as reports show, lipid lowering agents can be implicated. Other possiblity is that high cholesterol levels(deposits) may lead to myeloproliferative conditions such as thrombcystosis( this has been highlighted in case studies). Tizzys' vasodilation hypothesis sounds pretty good to me ;)


Have you been officially diagnosed with secondary EM ? Erythromelalgia, can arise as a consequence of various underlying medical disorders or drug toxicities, and in this form is sometimes considered more 'manageable' ie: treat the underlying disorder/stop or decrease offending medications. Of course, this is highly individualised like everything EM related.


Several theories have been proposed to explain EM pathophysiology such as microvascular arteriovenous (AV) , small-fiber neuropathy, vasculopathy and an abnormal expression of the sodium channel, which makes hypothesising even more complicated. I agree with Alina- EM is an enigma and no one 'cause' , 'symptom' or 'treatment' can be ruled out. Its great that we have such am amazing discussion forum for the community to learn and impart knowledge.Knowledge = empowerment

Which articles do you need, Ben? Maybe the mod team have them in their library :-).

God bless



Dear mads,

my EM is currently thought to be primary but there are accompanying effects that are not yet understood. For instance, since around May I have some weird sort of hyperexcitability. When I am frightened or stressed (e.g. my little son starts crying and I do not yet know what has happened to him) then I get sudden pains like hot needles on my torso and sometimes also red point in the painful areas. Also, I experienced similar pain during electro-physiological measurings (electrodes on hand and feet, I don't know the precise terminology) last week, a pain I did not have during the last measurings in 2012.

The results of these measurings normally imply large and small fibre neuropathy BUT I don't seem to have the symptoms usually associated with those, i.e. no sensoric or motoric loss. Interestingly, compared with two years ago, both my EM and these results have worsened, so they are possibly connected. My muscles tend to hurt in a burning way some time after use if I use them more than they are used to, but I would not say they are actually weaker than before EM.

I have not yet taken meds to lower cholesterol. But I had some hope that lowering cholesterol to the normal range might be an improvement in the long run.

The article I'm looking for is "Secondary Erythromelalgia", the author is Naas. If it happens to be in your library I would be very grateful.

Greets,

Ben

mads said:

Dear Ben,


Secondary EM has been reported following the onset of rosuvastatin use and associated myopathy ( statin lipid lowering agents are largely known for their potential myopathic toxicity. Have you myopathy (muscle weakness)? Do you take statins? If you do then you may find that, as reports show, lipid lowering agents can be implicated. Other possiblity is that high cholesterol levels, themselves, may lead to myeloproliferative conditions such as thrombcystosis( this has been highlighted in case studies). Tizzys' vasodilation hypothesis sounds pretty good to me ;)


Have you been officially diagnosed with secondary EM ? Erythromelalgia, can arise as a consequence of various underlying medical disorders or drug toxicities, and in this form is sometimes considered more 'manageable' ie: treat the underlying disorder/stop or decrease offending medications. Of course, this is highly individualised like everything EM related.


Several theories have been proposed to explain EM pathophysiology such as microvascular arteriovenous (AV) , small-fiber neuropathy, vasculopathy and an abnormal expression of the sodium channel, which makes hypothesising even more complicated. I agree with Alina- EM is an enigma and no one 'cause' , 'symptom' or 'treatment' can be ruled out. Its great that we have such am amazing discussion forum for the community to learn and impart knowledge.Knowledge = empowerment

Which articles do you need, Ben? Maybe the mod team have them in their library :-).

God bless



I too developed high cholesterol and high blood pressure. Don't know if related to EM.