Has anyone that has both Raynaud's and Erythromelalgia found supplements that help? I've been doing research, but many of the supplements are for one or the other. I figure the best would be to find ones that strengthen the blood vessels and make them more healthy, improving elasticity. But a lot of the ones I read about either open or constrict them which wouldn't really help. Any suggestions? Thank you
Helpful supplements for Raynaud's and... - Scleroderma & Ray...
Scleroderma & Raynaud's UK (SRUK)
I hope you get some good replies.
For what it's worth, was on my Pain Consultant's recommended antiinflamation combo of supplements for 6 years (.all approved by my rheumatologist & pharmacist). A v expensive exercise. My daily meds were helping so much to damp down all my conditions & symptoms, that I decided to cut back to just daily high dose vit D3 + B complex + vit C. That was a year ago. I've noticed no difference what do ever, except I'm paying less for supplements. (And I have been managing simultaneous RP&EM for years)
Interesting. I have tried so many 'natural' things as well with little relief, but since there isn't much we can do medically, I figure it's worth a try again. I am not currently taking B complex. I will add that. How high Vit C do you take? I've noticed if I take too much, it makes my other autoimmune symptoms flare.
for both you need to vasodilate so you have to also look at other pills and potions we take? Most modern day cures, night nurse etc are vasoconstrictors and make matters worse, so its plain old paracetamol or asprin only. I take a large does of a calcium channel blocker (CCB) called diltiazem which stops vascular constriction, nitrates open the vascular system e.g. isosorbide mononitrate, many take viagra as this is a nitrate that does the same job.
One of my problems is that they call my disease by many names eg periferal vascular disease and the consequences are stuff like knotty vanicus veins, deep vein thrombosis or vasculis. If your whole system is affected then you will get all the other stuff it is just in different proportions. Since taking 300mg CCB my hands, lower arms, nose, lips, tongue, nipples, abdermon, knees, big toe don't go so cold or hot when they fluctuate between white and red.
Like I've tried (very poorly) to explain, my areas most affected are the skin and heart but this can and dose affect any organ or area of my body.
You may need to open your mind passed what your now consider your boundries. I have not tried Q10 or Ialonga (wish l could speeeel) but many people swear by them, a big no no is st johns wort which is a major constrictor, also modern designer drugs are constrictors so is LSD type drugs, marajarna is a peculier one: while your smoking it, its a dilator but as soon as you stop it becomes a major constrictor.
Because of the lack of knowledge and the unwillingness of societies to change fully l have had to learn for myself and constrictors/dilators are my pet topic.
Well that's a bummer. I can't take calcium channel blockers due to the myasthenia gravis. Thank you for you interesting insights. I appreciate it.
Vasodilation is vvvvv bad for my erythromelalgia: be vvvvv careful doing anything to aggravate erythromelalgia! My first rheumatologist mistakenly put me on nifedipine: it permanently aggravated my erythromelalgia, and made most of my multisystem signs & symptoms flare (my primaries are infant onset systemic lupus & ehlers danlos + early onset a Sjogrens & Primary Immunodeficiency (hypogammablobulinaemia + lymphopenia) and mild vasculitis)
Those of us who have simultaneous raynauds & erythromelalgia need to be ultra cautious about any form of vasodilation
I had a terrible reaction to nifedipine as well, but not permanent. I'm so sorry to hear that! Then amlodipine also, but it was more gradual so it took a while to figure out the source. Now things have calmed down quite a bit. It just depends on the day though. Slept bad last night and woke up with the red face.
It's a good thing you're v experienced & self aware...we each have our personal versions of these immune dysfunction/connective tissue disorders...seems to me this is all about cautiously feeling our way and relying on reliable sources of info. Take care goldy 🍀🍀🍀🍀 and please let us know how things are going...I had my annual IV zoledronate infusion today which seems to be starting up my EM, or is it the warm temps today 😉...
Oh boy. Always something. Please take care. You're valuable to all of us here!!
So true. I think that's what makes it so hard for clinicians to be helpful; rare disorders to start with, and then each highly individualized because we don't know enough at the sub-cellular level yet to properly categorize the differences within the broad diagnoses. Thank you for your words of wisdom!
My rheumatologist also put me on nifedipine. Which gave me so much pain in my muscles in my arms and back. To the point I could hardly move my arms. My wrists were killing me. I was in that much pain when it makes you feel like being nausea. My back was terrible trying to walk. This is just to help anyone else out there taking this drug. Have you noticed this happening to you?
I stopped taking the drug and I am waiting to see what rheumatologist suggests on my next visit. The pains got less and less and nearly back to the normal pain we have on our daily basis.
I tried this three times and the three times the same thing happened in days. Pain etc., So really this drug did not help me.
I saw in earlier posts that nifedipine is being discontinued.
Thanks for this! Hope you'll let us know what your rheumatologist says. We seem to be a minority, but quite a few of us cannot tolerate nifedipine. My rheumatologist is offering me illoprost infusions, but am postponing until my symptoms are even worse.
Besides, at 63, my daily oral infant onset SLE treatment plan is complex enough as it is (hydroxychlorowuine + prednisolone + mycophenolate cellcept + amitriptyline). And also, nifedipine is categorised as anticholinergic, a type of pharmaceutical that can cause issues for patients on combined therapy oral meds, especially in those with incurable chronic conditions & in the elderly...here are 2 links:
Thank you Barnclown so much for the link. It answers a lot of my problems. No wonder I had been feeling a lot worse. I have downloaded it to read it more carefully.
I am trying Co enzyme Q10 that a friend told me about as I would rather not take the Nifidene prescribed. I live in warmer climates than the UK but at the mo in Greece and getting the few cold spells really flares the Raynauds.
Absolutely!. Have found after reading from someone else regarding a 50% reduction of outbreaks of Raynaud's. I purchased from Puritan's Pride on the web, Gingko, Garlic and Butcher's Broom. They help in opening the blood vessels and relieve at least 50% of the pain. This is from my experience as I have now been taking them for two weeks twice a day. Once in the morning and once in the late afternoon. Am thinking about even doubling up the dose. Anyway, try it. Hope it works for all.
Thank you for your reply. I just get worried since I have both extremes - Raynaud's and Erythromelalgia. That means I have trouble with constriction and over-dilation so those of us with both have to be real careful. I'm trying things one by one so that I can tell if it works or not. I have read about the Butcher's Broom. Maybe I'll give that a try as well. Thanks again
These are herbs. All natural so I do not believe they would cause any problems. Good luck if you try them.
I have scleroderma and I've been using THC the liquid.. and it's helps