Raynaud's Phenomenon & MS

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Re: Raynaud's Phenomenon & MS

Postby NHE » Fri Dec 18, 2009 5:56 am

Jimmyleggs wrote:marie, maybe NHE will chime in here to let us know what else he does along with his mineral intake changes, that could have acted synergistically to correct his raynauds.


OK, here's my supplement regimen. Note that everything else except vitamin D3 stayed the same (I was taking 1000IU of D3 and then switched to the combination supplement). Everything is on a per day basis.

6 g fish oil, provides 1800 mg of omega-3 fatty acids
400 IU natural vitamin E
100 mg R-Lipoic acid
4 cups of strongly brewed green tea (~75% of which is decaffeinated)
1 Tb ground organic flax seed
1/2 tsp whole organic turmeric

Combined Ca, Mg, Zn, D3 supplement
· 1000 mg calcium
· 400 mg magnesium
· 15 mg zinc
· 600 IU vitamin D3

The problems I had with Raynaud's: The distal ends of my fingers would turn white and cold. This would typically last for 30-40 minutes and would occur about once a week or so. It would occur in one hand at a time and typically in two adjacent fingers. Raynaud's has not reoccurred since switching over to the combination supplement from the 1000IU D3. It has been since February 2008 and no Raynaud's.

Disclaimer: I can't promise that it will work for you, but it seemed to make a difference for me. Note that I don't smoke and I don't consume ethanol.

NHE
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Postby pamf » Fri Dec 18, 2009 3:52 pm

For the record, I have Raynaud's too. It started up about 3 years ago. I was diagnosed with MS this year. I've suspected it's related. I also have chronic idiopathic urticaria, which started 8 years ago and is also temperature related.
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Postby euphoniaa » Thu Dec 31, 2009 7:20 pm

Just bumping to go along with other current discussions. It's a good thread -- on a common condition -- but it was moved from the CCSVI Forum to the General Forum, probably because MS isn't even listed by Mayo as one of the many causes of Raynaud's. Raynaud's is a circulatory problem, but it's exacerbated by cold (not "caused" by cold) and not by pressure on the nerves. I've had it for maybe 25-30 years.

(Edited to clarify my words)
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby jimmylegs » Fri Jan 01, 2010 9:44 am

exacerbated by cold, right eu? i think it's a spasming of the blood vessels? NHE maybe it was the blend of d and the minerals together..?

vasospasm is also related to tinnitus, migraine, carpal tunnel, optic neuritis, etc... interesting...
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Postby euphoniaa » Fri Jan 01, 2010 11:15 am

jimmylegs wrote:exacerbated by cold, right eu? i think it's a spasming of the blood vessels? NHE maybe it was the blend of d and the minerals together..?

vasospasm is also related to tinnitus, migraine, carpal tunnel, optic neuritis, etc... interesting...


Thanks, jimmylegs, I just changed my wording above a bit to be more precise. Here's a little more info from Mayo. I hesitate to copy and paste entire pages on these threads, but I doubt many people click on the links. It's a very specific condition, and once you experience the amazing color change and pain, it's easily distinguishable from other conditions. For me, it appears that my BP meds are mainly the cause, since they are ones that affect the blood vessels. I've also seen Raynaud's listed as a side effect for them somewhere, but can't find the info quickly.

From Mayo: During an attack of Raynaud's, affected areas of your skin usually turn white at first. Then, the affected areas often turn blue, feel cold and numb, and your sensory perception is dulled. As circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the changes of color isn't the same for all people, and not everyone experiences all three colors.


This picture shows what it looks like:
http://www.mayoclinic.com/health/medical/IM00654

Besides the diseases I listed in an earlier post, here are more CAUSES from Mayo:

Doctors don't completely understand the cause of Raynaud's attacks, but blood vessels in the hands and feet appear to overreact to cold temperatures or stress:

Cold temperatures. When your body is exposed to cold temperatures, your extremities lose heat. Your body slows down blood supply to your fingers and toes to preserve your body's core temperature. Your body specifically reduces blood flow by narrowing the small arteries under the skin of your extremities. In people with Raynaud's, this normal response is exaggerated.

■Stress. Stress causes a similar reaction to cold in the body, and likewise the body's response may be exaggerated in people with Raynaud's.

Blood vessels in spasm
With Raynaud's, arteries to your fingers and toes go into what's called vasospasm. This narrows your vessels dramatically and temporarily limits blood supply. Over time, these same small arteries may also thicken slightly, further limiting blood flow. The result is that affected skin turns a pale and dusky color due to the lack of blood flow to the area. Once the spasms go away and blood returns to the area, the tissue may turn red before returning to a normal color.

Cold temperatures are most likely to trigger an attack. Exposure to cold can be as simple as putting your hands under a faucet of running cold water, taking something out of the freezer or exposure to cold air. For some people, exposure to cold temperatures isn't necessary. Emotional stress alone can cause an episode of Raynaud's.

Raynaud's may be partly an inherited disorder.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Lyon » Fri Jan 01, 2010 11:26 am

.
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Postby euphoniaa » Fri Jan 01, 2010 12:02 pm

Lyon wrote:
euphoniaa..per Mayo wrote:your fingers and toes go into what's called vasospasm. This narrows your vessels dramatically and temporarily limits blood supply. Over time, these same small arteries may also thicken slightly, further limiting blood flow. The result is that affected skin turns a pale and dusky color due to the lack of blood flow to the area.

That's very interesting euphoniaa. Offhand do you know if those are also legitimate steps of hypothermia...when conditions actually warrant it?

Bob


Hi Bob,

I looked up hypothermia, but it seems to refer only to the all-over version. I do have to say that when it happens while I'm outside somewhere and have no way to warm my hands, it's downright SCARY and it hurts like hell. I always wonder whether it can cause true frostbite:

By Mayo Clinic staff

When exposed to very cold temperatures, skin and underlying tissues may freeze, resulting in frostbite. The areas most likely to be affected by frostbite are your hands, feet, nose and ears.

If your skin looks white or grayish-yellow, is very cold and has a hard or waxy feel, you may have frostbite. Your skin may also itch, burn or feel numb. Severe frostbite can cause blistering and hardening. As the area thaws, the flesh becomes red and painful.


That's why I say Raynaud's limits my life so much more than MS does. In fact, my house just cooled off a couple of degrees, so now one of fingers just turned white and started throbbing.

But, I keep forgetting to mention THE CURE for Raynaud's. After all these years, I've found it doesn't help to put on 2 more pairs of gloves, or hold my hands over the heat, or go into a warm room. The ONLY thing that works is to stick my hand inside my shirt against my skin, moving it from one spot to another, and they warm up in just a minute or two! You can't even tell where the white spots were.

This is really different than the deep, deep cold of being outside, where it takes a long time to warm your body (and your hands) back up. In fact, it's possible for me to have cold-all-over hands when I'm outside (like they're close to frostbite) AND white spots from Raynaud's at the same time. Or to be warm all over, but have frozen fingertips while handling frozen food in the grocery (It's hard to discreetly warm them up there. :) )

People hate it when I say things like this, but...MS is usually easier for me to deal with than the other crap in my life. :D
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Lyon » Fri Jan 01, 2010 1:28 pm

..
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Postby pamf » Fri Jan 01, 2010 1:58 pm

Just following up on this, something I've concluded is that my Raynaud's seems to occur specifically when my core temperature has cooled. I can go out kayaking (as I did today, for example) and my hands will just about freeze off me, but the rest of me is warm, so I don't get Raynaud's. If, however, I sit in my office all day and gradually cool down, it happens.

Back to the CCSVI connection, I do wonder about the mention of narrowing of the small arteries. Is this perchance similar to the narrowing of the jugulars currently being investigated in relation to CCSVI?
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Postby jimmylegs » Fri Jan 01, 2010 2:14 pm

that's kind of what i was thinking too pam. perhaps vasospasm is one possible contributor to venous stenosis..

i went to the wiki entry on vasospasm: http://en.wikipedia.org/wiki/Vasospasm

interesting..
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Postby Apuman » Fri Jan 01, 2010 4:51 pm

euphoniaa wrote:But, I keep forgetting to mention THE CURE for Raynaud's. After all these years, I've found it doesn't help to put on 2 more pairs of gloves, or hold my hands over the heat, or go into a warm room. The ONLY thing that works is to stick my hand inside my shirt against my skin, moving it from one spot to another, and they warm up in just a minute or two! You can't even tell where the white spots were.


Thought I may not (or may) have Raynauds, I'll put in my two cents as to how one get the circulation pumping in the hands.

I've done plenty of work outside in -0F, where I've spent several hours in these conditions and my hands would often go numb from the cold. One trick I was taught, was to make fists with your hands, and brind them up by your ears. Very quickly, swing your arms down to your sides, and snap your hands open. The centrifical force of you doing this will force more blood into your hands. Repeat until your hands are no longer numb. It works well, at least for a few minutes. :wink:

Lyon wrote:That's very interesting euphoniaa. Offhand do you know if those are also legitimate steps of hypothermia...when conditions actually warrant it?


In a word, yes. This is the first thing to happen in hypothermia.
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Postby Terry » Sun Jan 03, 2010 8:55 am

Iron- still on the table for me. Whether to supplement it or not is the question I wrestle with the most.


Cold hands and feet: The sign of iron deficiency?
by MariAnne/General


Everyone gets cold hands and feet sometimes, especially during winter. The difference is that those suffering from Raynaud's disease lose blood circulation in their outer extremities at the slightest change in temperature. In these people, the fingers and toes turn white or take on a bluish tinge as they get colder, and they may feel painful or numb. When they warm up again, they become red as the blood returns and may throb with pain for a few minutes to several hours, depending on the severity of the reaction. However, there are other causes why one might experience cold hands and feet. Believe or not, it could also be the sign of an iron deficiency.


How to deal with cold hands and feet?

Raynaud’s disease may be the result of overactive blood vessels, disorders of the connective tissue or emotional upsets. Whatever the cause, these feelings of chilliness or numbness are truly uncomfortable. That is why each person who has cold hands and feet because of that disease should know the following.
There are some ways to give your blood flow a little nudge to get your extremity temp closer to normal. You should get into herring. Fish rich in omega-3 fatty acids, such as mackerel, herring, salmon and anchovies, help reduce the painful blood vessel spasms that cause the shutdown of blood flow. That is why one should try to eat plenty of these cold-water fish to ease the pain of Raynaud’s or other circulatory problems due to cold weather or emotional stress. As an added bonus, these fish also help cut triglycerides, a factor that contributes to heart disease.

It is also important to know that woman’s core body temperature is one or two degrees lower than a man’s. Also, women are more likely to have cold hands and feet, whether due to Raynaud’s or not. One reason for the lower average body temperature is that many women are iron-deficient. Lack of iron can alter your thyroid hormone metabolism, which regulates body heat generation, so women who are aware of this try to consume the recommended 18 milligrams of iron a day, but even so, iron stores are depleted during menstruation.

If your body iron is low, greater iron consumption translates into more body heat, which is a good way to counteract your cold hands and feet.
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Postby jimmylegs » Sun Jan 03, 2010 4:10 pm

good find, terry!
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Postby euphoniaa » Tue Jan 05, 2010 4:37 am

UPDATE to several comments that came up here - and to further complicate the issue :D :

Following Jimmy's link to vasospasm, I moseyed on over to Wikipedia and revisited the page on Raynaud's. Although Wiki often has good info, I usually make my references to Mayo instead, since that site is less likely to change quickly. :)
http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon

So anyway:

**The Raynaud's page is where it notes Beta Blockers (I take those) as one of the causes of Raynaud's - that must be where I found it - as well as caffeine, smoking, etc.

**MS is not on their long list of diseases that seem to be related to Raynaud's either.

**The pics are great there (I think someone already linked those earlier).

**It CAN be as dangerous as frostbite - even potential gangrene.
quote from Wikipedia
Pathophysiology
Chronic, recurrent cases of Raynaud phenomenon can result in atrophy of the skin, subcutaneous tissues, and muscle. It can also rarely cause ulceration and ischemic gangrene.


And another interesting thing I learned there:
Erythromelalgia is the opposite of Raynaud's where the ends turn red hot from heat rather than cold. Erythromelalgia (the opposite of hot and warm extremities) often co-exists in patient's with Raynaud's)

(Of course, the hot, red condition mentioned goes along with the contention that MS patients tend to get overheated and flushed, and the oft made suggestion that MS patients get "red heads", too. :) I do NOT have those problems, however.)

My latest experience: On Saturday I had to spend about 10 minutes working outside when it was 20 degrees F. My hands almost froze, turned allover red and numbish, and my whole body (core temp) was shivering. Still no Raynaud's! No whiteness at all! Just the normal, allover reddish cold fingers that normal people get from exposing them to cold temps.

On the other hand (my right one, actually), last night I had a BAD, painful case of Raynaud's as I used my fingers to break up cold, fresh veggies for a salad -- while standing in my warm kitchen.

Now, before we all jump up and scream, "Yes! Yes! I KNEW it would turn out to be vascular, and therefore related to CCSVI...!!" I'll add a quote from one of my posts in the CCSVI Forum.

In my humble and respectful opinion:

So...if we decide that Raynaud's DOES have a connection to CCSVI, and if they finally confirm once and for all that everyone with CCSVI has MS, and everyone with MS has CCSVI, and no one else has either one, then that means that everyone with Raynaud's must have both MS and CCSVI, and then we won't need all that Doppler/MRI/MRV/spinal tap testing to dx us with either of them after all? That IS what it would mean, wouldn't it?

The problem with our determination to find more and more links between our varied symptoms and CCSVI...too many discoveries like that would therefore make it less and less likely that CCSVI is connected to MS.


Once we link CCSVI to all the symptoms we share with the general population, it will no longer be unique to MS.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Tue Jan 05, 2010 4:50 am

Hey, wait a minute! Doesn't that Wiki quote (above) about Erythromelalgia contradict itself? Good ole Wikipedia. :) But it does show more PN issues.

NOTE: I only highlighted PN below because I have PN and think that more of MY symptoms are due to HNPP than MS.

In Wikipedia's humble and respectful opinion:
Erythromelalgia, also known as acromelalgia, Mitchell's disease (after Silas Weir Mitchell), red neuralgia, or erythermalgia, is a rare neurovascular peripheral nerve disorder in which blood vessels, usually in the lower extremities(or hands), are episodically blocked and inflamed. There is severe burning pain(in the small fiber and sensory nerves) and skin redness associated with this blood vessel blockage. The attacks are periodic and are commonly triggered by heat, pressure, mild activity, exertion, insomnia and stress. Erythromelalgia can occur either as a primary or secondary disorder (i.e. a disorder in and of itself or a symptom of another condition). Secondary erythromelalgia can result from small fiber peripheral neuropathy of any cause, essential thrombocytosis, hypercholesterolemia, mushroom or mercury poisoning, and some autoimmune disorders. Primary erythromelalgia is caused by mutation of the voltage-gated sodium channel α-subunit gene SCN9A.
Last edited by euphoniaa on Tue Jan 05, 2010 5:18 am, edited 1 time in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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