Raynaud's disease

The other day I experienced something new and kind of disturbing. We went to our county 4-H fair, and I had really weird things happening with my hands/arms. I suspect it is Raynaud's disease.

"Raynaud's disease is more than simply having cold hands and cold feet, and it's not the same as frostbite. Signs and symptoms of Raynaud's depend on the frequency, duration and severity of the blood vessel spasms that underlie the disorder. Signs and symptoms include:

• Sequence of color changes in your skin in response to cold or stress
• Numb, prickly feeling or stinging pain upon warming or relief of stress

During an attack of Raynaud's, affected areas of your skin usually turn white at first. Then, the areas often turn blue and 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."
- From Mayoclinic.com

This is what happened to my arms and hands!!!

When we first got to the fair, it was warm so I was wearing a t-shirt and shorts. As the sun went down, it got colder and colder. We were following my son and his friends around as they went on the carnival rides. I was a bit stressed out from the environment, the smells and the noise. Then I got even more stressed out when one of the kids couldn't find his mom! We were wandering around and around trying to find this child's mother and my arms started going NUMB from the cold and the stress! First I got goose bumps and shivers, then my arms and hands turned WHITE and deflated and wrinkly looking. I was disturbed by this and then that's when the numbness came in. At first I thought I was just cold and it would go away once we got back to our vehicle. When we finally found the child's mother and got back into the truck to go home, my arms starting tingling and stinging! As if a large person had sat on them and cut off all the blood flow and feeling! It was a really weird sensation and I was waving my hands/arms around in the air trying to get the feeling back. The stinging didn't go away until I finally was able to take a really warm shower and go to bed.

I've always had cold arms/feet. Sometimes if I'm in the hospital the nurses will comment that they are worried about the coldness in my feet. If I'm stressed in any way my arms and feet go cold FAST! I've never really thought about why until now. I know others who have EDS/Fibro/Chiari who suffer from Raynaud's that is much worse than this! I do feel for them, as it is not a pleasant feeling at all!

At least I know why this happens and can try to avoid the cold and stress. It was a strange experience.

Backlash

Now I want to talk to something that is common with fibromyalgia and EDS: BACKLASH! That is my term I'm using for the "after effects" of my activities. It's a very strange thing because I will feel totally fine during a certain activity and then suddenly BOOM - I'll feel terrible! This can happen during the activity, soon after the activity or even the next day after an activity! So it's hard to know when I've pushed myself too hard.

The past few weeks I've been doing way too much. I work full-time which is good but it leaves me with very little energy for the evenings. Then the weekends are when I recharge and get things done around the house. When I do special weekend activities such as parties, traveling, outings, etc. I really pay for it. The next week I am "dragging butt" as I like to say :)

The past 4 weekends have been busy with July 4 parties, special outings, and visits from relatives. Which is fun but my migraines have been off the charts! Butt is dragging really bad. This past weekend I tried to clean and get some things done in the yard which I have been putting off due to all the special activites - this also created severe backlash! It's so frustrating - I only have so many "spoons" to use each day.

The Spoon Theory

So I would say that backlash is when I run out of spoons. But, I sometimes don't realize I'm out of spoons until it's too late!

Screaming to be Heard

I just read about this book called "Screaming to Be Heard: Hormonal Connections Women Suspect and Doctors Ignore " by Dr. Elizabeth Vliet.

http://www.amazon.com/Screaming-Be-Heard-Hormonal-Connections/dp/0871317842/ref=cm_cr_pr_pb_i

"Vliet, the founder and medical director of a women's health care center, believes that hormones play a significant role in women's health, especially in the perimenopausal and menopausal years. Varying levels of estrogen, progesterone, and testosterone can be linked to depression, chronic fatigue, migraines, fibromylagia, bladder problems, heart disease, and cancer. Vliet convincingly defends hormone replacement therapy, although controversial, as a corrective and preventive treatment, providing it is individualized and integrated with alternative therapies."

It sounded SO helpful I ordered it immediately. It sounds like something that will really help me! The problem is, I don't know which doctor to go to about this. The endocrinologist I went to declared I was completely normal in every way, which I know I am NOT :( So after I read this book I'll have to figure out if there is another doc. I could ask about this. Hormones are a contributing factor to a lot of the issues I've got going on!

Shoulder arthroscopy

Well it's official - I'll be having shoulder arthroscopy next month! I am sort of excited about it. Strange to say but I'm hoping the doc will be able to see something in there and fix it! The shoulder just keeps getting more messed up as time goes on!

Here is a link which explains shoulder arthroscopy:
http://www.nlm.nih.gov/medlineplus/tutorials/shoulderarthroscopy/htm/_no_50_no_0.htm

So basically, they will be going in to see what is happening with the tendons and cartilage. Then, the doc may be able to tighten up some tendons or fix any tears. I'll have to wear a shoulder sling for a few weeks afterward. I'm taking a week off to just give myself some time to recoup. Then, I'll be at work typing left-handed for awhile :-S

I've noticed it getting worse and worse with opening doors. If a door is heavy I try to open it with my left arm or I hold my shoulder really close to my body and use my entire arm to open the door! Sometimes I'll kick the door the rest of the way open with my foot. A couple nights ago I tried to open our refrigerator door and I had the weirdest feeling in that shoulder! It felt like something STRETCHING inside near the shoulder blade area, then the whole shoulder hurt for hours afterward. So something is definitely amiss.

I feel strangely validated by this doc. Finally someone willing to admit my shoulder is unstable and is going to do something about it! Not that I am excited to have them cut into my shoulder, but it has been a nagging problem for over a year now. All my other docs didn't have a clue!

Ocular Rosacea

The other day we took a long day trip. We left at 7 in the morning and didn't get back until 9 at night. Car rides are always tough for me, because they make my neck spasm and then I get a migraine :( I made it through the day alright, but when I got home I was so tired I could cry - except I was too tired to cry! And strangely enough, my left eye was extremely bloodshot!

Then I remembered reading an article about Ocular Rosacea and how it is connected to migraines: http://emedicine.medscape.com/article/1197341-overview?src=emed_whatnew_nl_0#Rosacea

"Studies have shown an increase in rosacea in patients with migraine headaches. It is postulated that patients with rosacea have a vasculature prone to vasodilation."

I'm not sure if I have ocular rosasea or not, but my eye looked exactly like this picture! I went to sleep and woke up at 4 a.m. with a raging migraine. In the morning the eye was a little less red but you could still see all the little red blood vessels. I am pondering this statement "prone to vasodilation." I do "flush" easily and then this weird eye thing. Hmmm.

Human weather barometer!

This happens quite a bit. I'll be feeling good, sitting at my desk working when all of a sudden I'll feel a "twinge" in my head. It feels like a headache may be coming on. . .I go over to the weather channel and look at the doplar radar. Sure enough, a big green blob is traveling toward my area. It's weird how I feel it BEFORE it arrives! I'm not kidding, it's very strange!

Acetaminophen

FDA panel votes to eliminate Vicodin, Percocet
Deadly overdoses of acetaminophen, narcotics are cited in recommendation

http://www.msnbc.msn.com/id/31664450/ns/health-more_health_news/

This is a bit scary to me, because I take acetaminophen (Tylenol) quite often. I had to check my medication bottle to see exactly how much I've been taking! Luckily I have only been taking 500 mg./day, which is under the new recommended dose of 650 mg. Still, it is a bit unsettling to hear about all the people suffering from liver failure by taking this medication. We were always told it was a "safe" medication!

I read labels religiously and I tend to avoid the "combo" products that have Tylenol added. The only one I will take is Nyquil, when I have a bad cold.

Also unsettling is knowing many chronic pain sufferers, including family members, who take Tylenol containing products often as well. I will be passing this info. on.

I don't "like" taking medication. I always wanted to avoid it - in fact I had my heart procedure hoping that I could get off my heart medication! Well that didn't work at all and soon after was when I had to resort to taking heart medication AND pain medication! Oh well! I figure as long as I only take the minimum needed to get through my day, it'll be OK :-S