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CMTinColo
10-20-2005, 12:57 PM
Hi everyone! I'm sure that you all see this quite a bit (a new person with lots of questions) so I hope that it isn't too forward to both introduce myself AND ask for help in the same post.

I was just diagnosed with SLE two months ago. It came after a MAJOR flare up that followed a very unexpected miscarriage. After a hefty regimen of predinisone, I have finally switched to plaquenel and am starting to lose the weight and lousy breakouts I suffered with the prednisone. I have a few questions that my Rheumatologist can't seem to answer and I was wondering if any of you have had experience with these things.

It also seems that I have a clotting problem that is incorporated with the Lupus. I developed a clot in my portal vein (between my liver and my spleen) that caused a lot of upper abdominal pain. Discovering the cause has helped and starting an aspirin a day has GREATLY decreased any abd. discomfort. I wonder if anyone else had this problem?? :?:

Also, since the MAJOR flare up, I developed tiny little pin prick sized red, blood filled dots. I'm pretty sure they are Cherry Angiomas. The crazy thing is that I have HUNDREDS of them. On my chest, arms, belly, and upper legs and even a few in my hair line on my face. They are not in clusters like a rash, they are totally independent of one another with at least an inch or two between them. Some are bigger, some are smaller and every week or so, I seem to get more. No one seems to have any kind of answer to this except that a big outbreak of them could be linked to liver damage but they don't say what KIND of liver damage. :shock:

Also, the headaches that I get nearly everyday are very specific. They originate either behind the eyes (like behind the actual socket) or in the brow. Traditionally, I've thought of the brow headaches as sinus related, but am wondering if this area is typical of Lupus induced headaches?

Oh and one more question... I am a massage therapist so my work is very physical. I have started to have great limitation in my ability to work in this field and am wondering if anyone else has a very physical profession and how they've handled that with the difficulty of the disease.

Thanks to everyone in advance for reading this and for offering any advice you could give. I really appreciate your help!

hatlady
10-20-2005, 04:28 PM
Welcome CMT!

I'm not able to answer many of your questions, hopefully others will chime in. I've been quite lucky - my lupus was caught early and I've been able to manage with plaquenil, some pain meds, and lifestle changes.

I did have the headaches - and still get them from time to time. Man they can be killers! Mine are like migraines - not to the level of knocking me flat, but close. Often the only thing that helps them go away is a cool/cold compress on my head and eyes.

Your profession is such a helping one, I know of one other CMT who has continued her work, in moderation. Monitor your energy and strength. I know my own strength is lesser now, no more slinging 50 pound bags of birdseed for me! You may find that you need to adust your theraputic style. Possibly reiki is an option - dealing with the energy of the body rather than physically manipulating?

You may want to list your questions and take the list with you to yoru doc, that helps focus duringa visit. It also defines the time you need - both the doc and you know what needs to be covered.

Hugs and welcome!

catlady4520
10-20-2005, 07:08 PM
Here's some info on Webmd that I located. I too had lupus headaches and they could range to anywhere between behind the eye sockets to one side or another of my head (i have lupus of the brain). I too also had clotting problems thus the reason for the seizures. See the following artic
http://my.webmd.com/content/Article/6/1680_51584.htm?pagenumber=2le

catlady4520
10-20-2005, 07:11 PM
sorry my link didn't work but if you go to webmd and put in lupus, there alot of useful info.

It's tough having a physical job with lupus but staying active also helps. I've got lots of joint problems as well as osteoarthritis in my thumb joints.

I see you're from Colo - where in Colo? I'm from Pueblo. Good luck in your quest for answers and hang in there! You will find lots of support on this site!

Mitch
10-21-2005, 09:42 AM
Hi CMTin colo! Welcome! I'm wondering if the clotting problem you're referring to is Antiphospholipid Syndrome. IF so, that does predisposition you to miscarriage, clots, and possible stroke and heartattacks. (I have this, too!) If you'd like more info, search Antiphospholipid Syndrome, or in the UK it's known as Hughes Syndrome. Another of the symptoms is frequent migraine-type headaches. I am currently on aspirin and coumadin to thin the blood. Considering you did, in fact, have a clot, usually they will treat you more aggressively with coumadin in addition to aspirin. That is the only (but very effective) treatment for this condition. As far as the little pin-point red spots, I have heard of this, but can't recall what it is called right now. If I find anything, I will be sure to let you know. Welcome again!
Mitch

CMTinColo
10-22-2005, 01:46 PM
I didn't even check back here for a few days because I assumed that it would take some time for people to respond, but I am sooooo touched and grateful for all the well wishes and welcomes. Thank you all so much for the warmth. I'm so very happy I've found this place.

Thank you Hatlady for both the welcome and the info. I appreciate the advice for adjusting my work. You're quite right, Reiki and other energy-based work would be much easier on my body. I can't believe I didn't even think of that! I also appreciate knowing about your friend who has been able to continue her work. That's hopeful. :D

Thank you so much Catlady for the info. I did in fact check webmd and you're quite right, they have tons of good info. I'm so sorry to hear about the problems you're having. How scary it must be for it to be affecting your brain. I sooo wish you the best healing.

Hi Mitch! Thanks so much for the info. And yes, in fact I do have Aniphospholid Syndrome though they have not seen fit to put me on coumadin as of yet. I am just taking an aspirin a day thus far. I appreicate your keeping your ears open for the info on the spots. I think they may be called cherry angiomas (which are usually a fairly common thing to get throughout your life... but not in mass numbers apparantly). Thank you so much for your warm welcome too!

You guys are awesome and I truly appreciate all the support.