Anyone else experience Raynaud's Phenomina?

[Shine_on_Syd]

Many years before I was diagnosed with Aortic valve insufficiency I was diagnosed with a circulatory disease called Raynaud's Phenomenon. I was never given a reason as to its cause. Raynauds can affect the capillaries, circulation of the extremities and I wonder if it is related to my migraines. Further, when I had OHS my surgeon said both my aortic valve and pulmonic valve were myxomatous (all soft, non firm and fatty tissue...in fact the surgeon said it looked like it went through a meat grinder) again no reason was given for the myxomatous appearance. Curiously, the man scheduled to have his Ross Procedure before mine also had Reynaud's. While there is no medical literature that I can find linking this circulatory disease to heart valve problems, or migraines I though I would asked here if anyone else was diagnosed with it. Also, the medication prescribes is generally an alpha blocker which I assume contradicts the beta blocker I take?
Here is more about Reynaud's... as always your input is valuable.

More info:
Raynaud's disease and phenomenon are circulatory disorders. During an attack, blood vessels narrow. This causes blood flow to the fingers and sometimes ears, nose, and lips to be severely reduced. Cold temperatures or emotional stress, such as excitement or nervousness, are the usual causes of attacks. Although blood vessels naturally become narrower under these circumstances, Raynaud's is an abnormally exaggerated response.

There are two types:

Primary Raynaud's (Raynaud's disease) ? the most common form. Primary Raynaud's occurs by itself, in the absence of other medical conditions.

Secondary Raynaud's (Raynaud's phenomenon)? the more severe form. People with secondary Raynaud's also have an underlying medical condition that causes Raynaud's. Some common conditions associated with Raynaud's include:

Scleroderma
Lupus
Rheumatoid arthritis
Sjogren's syndrome
Carpal tunnel syndrome

Causes
The cause of primary Raynaud's is not known, but it is probably related to an abnormality of the sympathetic nervous system. Secondary Raynauld's is believed to be caused by the associated disease.

 

[bvdr]

I find this to be a topic of interest to me. For many years I've had some strange things happen to me. One of them was raynaud's symptoms. It started shortly after moving to North Carolina from FLorida. Some of my fingers would turn so cold and turn white after very little explosure to winter weather. This would last for hours. Sometimes the tip of my nose would do the same. During that time I was having some renal problems and for the most part everything became less of an issue as I got older....except the chest pain when breathing cold air. I had some tests done then and the initial diagnosis was Lupus but then it changed to Rheumatoid Arthritis. That diagnosis stayed on my medical record for a long time and then just kinda faded away. I have had joint and muscle pain and migraines since I was a teenager. Of interest is that I had never been diagnosed with rheumatic fever in my youth but ended up with rheumatic heart disease, which many consider to be an autoimmune disorder. The pathology report following my valve replacement also mentioned that the tissue was myxoid degenerative tissue. I guess I was just destined to get valve problems from one direction or another.

 

[HeatherK]

Shine_on_Syd,

You know - this is interesting, because I was just looking up connective tissue dissorders, and Raynauds was listed under them. And my mom (the patient) also suffers from Raynauds (not sure if it's primary or secondary), and had dissections in the ascending and descending aorta. When I saw Raynauds under the connective tissue dissorders, I was curious as to whether it had any play into her dissection too. But I couldn't really find any correlation between the two. So it's interesting finding someone else with the condition. (I also have a mild case of it, so in that regards I'm really interested as to whether there is some link between the dissection and Raynauds!)

If you find out anything, please pass the info along!

-Heather K.

 

[Heather Fisher]

My husband's aunt and niece have both been diagnosed with it but both are as healthy as horses. In fact his aunt is in her 90's. Other than that, I don't have any knowledge of Raynaud's Phenomenon.

Heather

 

[Arlyss]

Renaud's and BAVs

Renaud's and BAVs

I know two sisters, both of whom have severe bicuspid aortic valve disease, including aortic aneurysms, that also have Raynaud's. I hope some day more will be understood about these various connective tissue disorders.

 

[M&M]

Relief from Reynauds Disease

Relief from Reynauds Disease

Hi Syd - Sorry to hear about your diagnosis.. I have also been diagnosed with Reynauds Disease - Doc said its really not a bad as it sounds - but then again he doesn't feel the 'cold'. For me my fingers and feet get freezing. I have found that if I put gloves on "before" I go out into the cold winter day - it helps relieve the 'cold' feeling.

The best advice my doc said he could give me was to move to a warmer climate. Thats what all his patients have told him is the best medicine. Other than that - cover hands before going out - and when you pick up the tall 'frosty' glass of ice-tea - I can actually 'feel' my fingers go from warm to cold.. Also when I go into the freezer - you can see my fingers turn white with cold. So, I guess the best advice I can give is - cover up.. I also think it was my beta blocker that caused this.. But doc says sorry but its not.. Some people just get it later in life.

Keep WARM.. and Good Luck
Runner

 

[Shine_on_Syd]

Betty, it sounds like we have some commonality. I truly think its all related somehow.
Runner, my first attack of Reynaud's was in my mid 20s, (over 30 years ago) my foot was ice cold, turned blue and I was hospitalized in Milwaukee for 5 days and they could find no cause. Turning blue in one foot is not typical of Reynaud's but that is the best they could come up with. I continued to seek out a diagnosis and cause and went to the Mayo Clinic. The specialist there said "why in the world would someone with Reynauds live in Wisconsin with the bitter winters" Well, at the time I had a very well established career and my family was settled.
Now I live on the coast of NH, much warmer than WI and it rarely gets below zero degrees. But when the cold weather comes my body reacts and my hands and feet tingle most of the winter. I've learned to live with it and no doctors think it is a big deal. But I am really curious of there is a link to my Myxomatous valves and migraines.

 

[Phyllis]

According to the following URL and others I have found, there is a connection between certain beta blockers and Raynaud's. http://www.ohiohealth.com/healthref...E6-41C1-8955642FA71A0EEF.htm?category=disease
I also find the connection between Raynaud's and migraines interesting as my 35 year old daughter suffers from both.

 

[Roncul]

I am vice chair of the Raynaud's Association (www.raynauds.org). Raynaud's is quite common in the general population (an estimated 5-10%) so chances are that some people with heart valve issues (myself included) also are likely to have Raynaud's. From what I've heard and read, there is no connection between them, but I'm not a doctor (nor do I play one on TV). The Raynaud's Association has great information, including useful products to stay warm.

 

[river-wear]

Thank you for the link, Roncul! My sister and I both have Raynaud's too. As far as we know (and she's 10 years older than I), her heart is perfect. Neither of us suffer from migraines. She has warned me, however, that symptoms seem to get worse with age. She lives in Michigan, so at least I have the climate advantage.

(This thread is more than five years old; some of the original posters aren't active anymore.)

 

[Michele]

I have experienced Raynaud's for quite a few years. Not sure what it really means except an inconvenience.