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Biomarker for Diffuse Scleroderma skin has been discovered!


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#21 piperpetpete

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Posted 10 June 2009 - 06:16 AM

Hey Honey,
Wow it sounds like you have had quite a journey along the way!! Your courage is remarkable. How are you doing presently as far as drug therapies and such?
I am taking each day as it comes some better emotionally than others. The unknown as far as how bad it will become just eats away at me sometimes.
I still only have the achy pain behind the knees and occasionally in the crook of my elbows. And the pain behind the knees has diminished quite a bit since I stopped the walks. I'm thinking I will try some swimming in another week or so and see how that goes. Yoga....awesome, something I need to do more of!
Last night my son, his girlfriend, and I took my hubby out for his 50th birthday and for a couple of hours I felt like the "old Carol". It was great!
I spoke with one of my long time friends today about all that is going on and it didn't make me feel any better. In fact, I felt worse emotionally. Hearing about all the great stuff going on with her and her family and no health problems.....Yeah, I know I was having a pity party.
Yes, about knowing all you have......a great husband, son, home life, good health insurance, some good close friends,two golden retrievers.....I will try to seek those out more often when my thoughts are down.
I'll bet the clients in your group classes are inspired by you each day! When you lose some of that active part of your life, it changes you. I always dealt with life's general stressers with exercise or MOVEMENT! Now I'm not sure who I am anymore. Sitting and thinking is NOT something I do well.....always moving and thinking worked for me for 53 years!! Quite a change.
Let me know how you're doing and your health views and any tips you can give me.

Carol

#22 Honey

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Posted 10 June 2009 - 08:24 AM

Hello, again. It is great to write to you and anticipate your reply.

Yes, I am on medication...prednisone 10mg daily for the inflammation and general well feeling, methotrexate (MTX) & folic acid for the joints (primarily a rheumatoid arthritis medication), and neutronin (primarily an anti-seizure medication) for the nerve pain in my feet. I have no side effects from the meds thankfully, and they help me tremendously. I missed a prednisone pill one day, and my feet let me know right away.

I have lost 20 pounds of muscle and other connective tissue with this disease. The collagen just squeezes it together and it sure is painful. I think the last time I was 94 pounds was when I was in 9th grade! All of the dedication to strength and cardio workouts so I could be strong in my older days probably delayed its onset; maybe with you, too. Swimming is an excellent choice of cardio. And it feels so good to be in a pool moving and having fun. I take my grand-daughter to our club's pool and it is a blast!

I, too, focused my workouts on cardio and strength, and wanted so much to teach Yoga, being certified, but just didn't have the time for it on my schedule. With a second club opening on the other side of town, I was able to adjust my schedule at one club, and start teaching a Gentle Yoga class 3x a week. It was just what my body needed, to focus on strength and stretching with restoration and relaxation. And you know what? Right when I started teaching it is when the carpal tunnel, TMJ, and skin manifestations of scleroderma appeared.

If you seek swimming and yoga as a regimen to your exercise program, you will be pleasantly surprised. It will be a change, but for me, a change for the better. Yes, my students are wonderful for me, and most of them have some physical issue they are living with; fibromyalgia, arthritis, back and knee conditions. I fit right in. It makes for good fellowship.

Keep in touch, please. Let me know how you are doing. It is great therapy to know others are living with the same or similar health conditions. I feel comforted and encouraged to know others share in the same emotions and thoughts I have.

Kindest regards,
HONEY

#23 Kamlesh

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Posted 10 June 2009 - 12:24 PM

Hi Carol,

I was completely devastated when I was diagnosed in March 2004. Wow, it is already five years.

First two years were very difficult, but once I got it under control, I am almost a “normal” person now. I went through aggressive treatment of Cellcept (3000 mg for three years) and partial fundoplication to control my acid reflux (May 2008). Start aggressive treatment and keep positive attitude, rest of the things will automatically fall in place.

Take care!
Kind regards,

Kamlesh


#24 piperpetpete

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Posted 10 July 2009 - 09:12 AM

Well, guys, I'm still awaiting the visit to the rheumatologist later this month and I've had no changes. The swelling on the inside part of my knees is going down slowly so I guess that wasn't skin thickening after all.

I'm swimming at least an hour five days a week and lifting the other two. Feeling pretty good but still just worried about all this positive SCL 70 STUFF. Hope you guys are having a good day.It's overcast and lower temps here in Atlanta.

Enjoy the weekend! :)

#25 piperpetpete

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Posted 08 November 2009 - 05:58 AM

Hey Guys,
Just wanted to give u an update on my situation......no changes. Not surprised, I'm sure some of you! Still no changes since July. Ligament pain ,at times, and inner arm muscle tingling pain. Seems to really get fired up after a massage. When she really massages the arms within the next few hours, the areas become tingling and painful. Weird. After swimming laps for an hour, some days they hurt and others, they don't. I am now down to 11.2mgs. every other day on the Prednisone. Slowly weaning all the way 1mg. every 28 days. On the days I weight lift legs they don't bother me but if I walk anything over a couple miles, the liagment area will act up some. I have my next appt. with the rheumatologist on the 13th. She did order a vascular test too on my legs which was normal. So I imagine she will just tell me to continue off the Pred. and see what develops. Since all the baselines were normal, I guess I am playing the "wait and see game" just like alot of u guys have done. My eyes haven't changed any (since I am on the Pred. for ocular myasthena gravis) so that's a good thing. Hope all of u have a restful and peaceful day!
Cheers!
Carol :VeryHappy:

#26 Snowbird

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Posted 08 November 2009 - 12:16 PM

Thanks for the update Piperpetpete....glad to hear you're still plugging along without any further bothersome changes. Might be worth mentioning to your massage therapist to maybe try going a little lighter on your massage in that area to see if that helps....perhaps he/she is just massaging to deeply for your body to take? I know with me, I can't take any of what I call 'tugging/pulling' on the joints to loosen them...or I hurt for weeks! :D
Sending good wishes your way!

#27 piperpetpete

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Posted 08 November 2009 - 04:12 PM

My thoughts too ,Snowbird!!! I wondered if maybe she was pulling and tugging too hard. Interestingly enough, it doesn't bother my legs when she does it but yes, I will tell her next week to go easy on the arms ;)
Hope you're doing well! The "wait and see" approach still drives me crazy sometimes but emotionally I'm doing much better! I know some of you guys waited for many years before getting a definite diagnosis.  Meanwhile, I educate myself with all the great information on this site. Thank you ALL for being here.
Carol

#28 Sweet

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Posted 12 November 2009 - 03:24 PM

Hi Carol,

My apologies for missing your first post! Welcome to the forums. I'm glad to see you have jumped right in and are posting. You can already see what a great place this is can't you! Again, welcome.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)