Flare or more???

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Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/6/2008 1:44 PM (GMT -7)   
I am still very new at all this so I wanted to ask for some input.

I started pred a few weeks ago and most of my symptoms improved. pain, fatigue... but I still have an issue that is not improving. I can feel pretty normal, but once I exert myself at all (and not much - I'm tellin ya) My heart pounds out of my chest for ever. Just walking down the steps - I have to sit down for an hour and rest. It is either worse when I lie down, or I just notice it more, but I was up half the night just because my heart would not stop pounding all night long. not all the time but occasionally I will get a sort of ache in my chest and shoulder as well, usually when the pounding has been going and going (picture the energizer bunny!) turn

btw - this was happening before the pred.

can anyone relate to this or have any advice? I see Dr in a few weeks. should I wait for the visit? her nurses are ancient and I hate talking to them. it's like talking to a wall.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/6/2008 3:01 PM (GMT -7)   
Hi Mawmaw,

I would talk to the doc as soon as possible about this. Lupus can cause a number of problems that can affect the heart. It can attack the sack around the heart for one thing. It can also cause thick, sticky blood. The doctor can check for this (anticardiolipid antibodies and antiphospholipid antibodies). It can also cause problems with the valves. These are just a couple of the things that can go wrong skull

You really should have it checked. Even low iron can cause the pounding. I really think a doctor will need to figure it out. When you describe it over the phone, they can decide if you should come in right away or wait for your appointment.

Better safe than sorry.

I hope you'll keep us updated!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/6/2008 3:02 PM (GMT -7)   
BTW: Is your name derived from spinning (as in spinning yarn) or spinning (as in your head is spinning) or something else? LOL Just wondered!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/6/2008 3:20 PM (GMT -7)   
yes I spin and knit. although my head does spin quite frequently as well!

thank you for the advice. I put in a call.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/6/2008 3:23 PM (GMT -7)   
I absolutely LOVE knitting!! and crochet too. Actually enjoy lots of crafting . . . but have been calling knitting and crochet my "recliner sports". LOL When I can't sleep, I knit !! I've been making lots of my wedding (afghans) and baby shower gifts too!! Glad to meet you!! Do you make socks? I'm addicted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/6/2008 3:37 PM (GMT -7)   
yes. my favorite knitting is socks. I won't wear any other socks now! knitting and spinning are my therapy
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/7/2008 4:15 PM (GMT -7)   
well I left my Dr a message saying I was having bad heart palpitations and pounding on slight exertion yesterday at 5pm but have never heard back! I feel better anyway but still... I woke up this morning with not even a headache. it's been since May that I felt "well" the only issue I had today is that all my muscles feel like I worked them hard. My muscles shake holding a glass of water, or walking. I'll call her tomorrow at the office I guess.

Oh Rosie - are you on Ravelry?
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/7/2008 7:54 PM (GMT -7)   
Mamaw . . .

What is Ravelry ???? Never heard of it.

Some docs don't check messages over the weekend. They include instructions to go the ER with urgent matters. I hope you continue to feel better! Wouldn't that be great!

Yup! I love my socks! What kind of yarn do you like for wear??? I've been disappointed in the short life of some socks.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/7/2008 8:42 PM (GMT -7)   
ravelry is a knitting crochet and spinning community. you have to get on a waiting list but it's pretty cool. www.ravelry.com

I used to use merino for socks until I decided they were disposable! so I use wool with at lease 10% nylon. I also learned to knit new heels and toes for worn out socks. just cut a thread before the hole in the old toe unknit until its off pick up stitches and knit a new toe. if you change colors for the toe and heel you can see right where it starts. you can knit a "toe" for the new heel just don't decrease so much.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2008 6:13 PM (GMT -7)   
OT - sorry everyone

Thanks Mawmaw!

Yes, I've discovered the repair style of picking up stitches and re-knitting spots. Mine wear out under the ball of my foot. I'll try the wool/nylon. The cost has me stumped though. I'm trying to find a good place to buy this yarn. Any ideas? I'll peek at the raelry site. Thanks.

Feel free to email me. I really dragged us off-topic. LOL I just made a couple pairs of baby socks this week too!! Darling! My favorite socks so far, were made from thread and were for my granddaughter's American Girl doll, Kristen. They were perfect!! They even have multiple cables!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 7:47 PM (GMT -7)   

Hey Spinning Mawmaw,

When I had the heart attack in Octonber, 2007, I experienced pain in my right shoulder.  No chest pains at all.  I have chest pains because of angina, but did not know that a heart attack could be causing pain in one or both shoulders.

I urge you to go to the emergency room, if you cannot get hold of the doctor. 

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/10/2008 8:16 PM (GMT -7)   
well, I feel much better, but I am very frustrated that the Dr. never called me back. I dislike her office staff.
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/11/2008 6:43 AM (GMT -7)   

It is not only aggravating for the doctor to not call you back, it is dangerous.  and any and all medical persons should know that pain in the shoulder could be a heart attack.  and until they know better, they need to treat it like a heart attack.  better to err on the side of caution.  a simple blood test will tell them if you had a heart attack.

My neighbor down the street went to the emergency room because she gained 40 pounds in two weeks.  She ended up having by-pass surgery, and was told that she had been having heart attacks for a while, she just didn't know it.  Her only symptom was this rapid fluid weight gain.

Not trying to scare you, just very disappointed in your doctor and his staff.  To have medical staff ignoring this prevalent symptom of a heart attack, is worse than us ignoring it.  they are trained to know.  It may have nothing to do with your heart, but best to have this test done if for no other reason, than to rule out heart problems.

Hope the rest of your day is good to you

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/11/2008 2:54 PM (GMT -7)   
Thank you. If I start having those symptoms again I will head right to the ER. I was really concerned, but like I said when I woke up I felt good. who knows what it was? but yes, I am really thinking about getting a new GP. that was ridiculous. I expected at least a call on Monday, but still nothing.
grrrrrrr
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/11/2008 5:52 PM (GMT -7)   
Sorry folks, off subject again. Rosie, I didn't know you were a knitter. You must join Ravelry. I am an Addict!

Spinningmawmaw, what's your Ravatar? Mine's same as here. Have you checked out the group: fiber artists with connective tissue disease? Not real active, but another place to share info. Let me know your rav & I'll look for you there. I'd love to see your work. I don't spin but have tried dyeing wool.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/11/2008 8:32 PM (GMT -7)   
I'm Mrs-weasley on ravelry
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2008 6:31 PM (GMT -7)   
Thanks Patty !! Feel free to email me (Mawmaw too!) with fiber comments/questions/fun!!! I'm a needle felter as well !!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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