piperpetpete

New here and scared

28 posts in this topic

Carol,

 

Sometimes things even get better. I am a 1000% better. My doctor put me on Cellcept and I am in remission. The joint pain and burning has gone away. I still get tired easily and tight in spots but life is good. I wish you well.

 

Alice

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Alice how long have you been on the cellcept and how long ago were you diagnosed?


Shennen

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Hello, Carol.

 

I am also a personal trainer and group fitness exercise instructor who at age 57 was diagnosed with diffused systemic scleroderma. With over 20 clients and 10 exercise classes per week, I am in awe as to where it came from. However, I was diagnosed with Raynaud's in 1994 as you were, but it was not really bad after I learned how to modify its attack on me.

 

I was diagnosed in February of this year, although my rheumatologist told me I had it just by seeing my feet and legs in January. The testing did not confirm it, however, as my anti-bodies are normal. But it has caused slight hypertension in the mitral valve. Heart rate has increased 30 bpm.

 

After 27 years in fitness, I am now just 94 pounds, but my faith is that of mountains. After the initial shock of being diseased, it is incredible how much love is given by others, who may never have been able otherwise to share it. I know that I will be able to share that love through this "bad time", and that makes all the difference. Support from your husband is so very necessary, and you can be strong for him, as he may be suffering more than you. I know mine is.

 

You may not be the person you used to be, but you are the same YOU. Your friends and family will adjust to the change and be so grateful for your life. May it bring happiness.

 

Kindest regards,

HONEY

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Thanks Honey, it was a treat to hear from another health nut that has a quirky immune system! Have you been able to continue your workout schedule? The only other problem I'm having is pain behind my knees and I've had to take time off from any kind of cardio. I don't even know if this is related. As of yet ,my rheumatologist hasn't diagnosed me. We've just seen the results of the ANA test.

I'm curious if the muscle pain I've had over the past six months is scleroderma and how I can get it to calm down so I can still do cardio. I still lift upper body and some light lower but that's all I can handle now. I still need to finish the baselines and will go back July 24th for results. My husband keeps telling me we don't have a definite diagnosis right now so just chill. And even if I do, he says we'll do everything possible to face it and fight hard. Yes, I did really luck out in the hubby department. My greatest fear is I won't be able to do all the active things we've always done. I hate to hold him back. All the thoughts about retirement and the things we've wanted to do are very active. Our whole family is like that.

 

Carol

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Carol, thanks for your reply.

 

I have had to retire from personal training and all cardio and strength classes, but I am teaching 3 Gentle Yoga and 2 Line Dancing classes a week. I am very grateful I can continue those forms of exercise. I have contractures in all joints, which makes range of motion very small; especially in my knees, wrists and elbows.

 

I wouldn't be surprised if the trouble you are having now with muscles and joints isn't related to scleroderma, if that is what you are diagnosed with. My journey may have started with the Raynaud's in 1994, but a 18 months prior to the diagnosis, I had carpal tunnel in both hands. I was truly perplexed as to how I got it, but attributed it to using the tubing in one of my strength classes. I had surgery on my right hand and a few weeks later I had dental surgery. My dentist asked me if I had arthritis of the jaw after reviewing an x-ray, and I told him that I didn't. He said it was either arthritis or TMJ. I was astounded once again that I could have something else I didn't anticipate. I also started to feel tired and fatigued a lot, but I attributed it to "getting older." One good thing happened, however. The carpal tunnel in the left hand disappeared.

 

It was just a couple of months after the dental surgery that I had my first skin symptom. My feet started swelling and the skin was pigmented, warm and tender. It progressed to where I could hardly walk without pain all the time. Range of motion in my knees started to decrease and my grip never came back after the CT surgery in the right hand or even in the left. My knuckles were swollen before the CT, and never released.

 

My doctor told me that I needed to see a rheumatologist since it wasn't vascular or bone related. I did, and the rest is history. The scleroderma was manifested in my body as several different things before it started to aggressively attack me. It is amazing how your body will react to changes in itself. I was getting all sorts of reactions, and had no clue it would have been scleroderma until the changes in my joints and skin. I had learned of scleroderma after seeing a documentary several years ago. I was praying that I wouldn't have it, but my rheumatologist told me right away just from seeing how my feet and legs looked. Oh, that was heart-breaking.

 

Each day is a gift for me and my family. It put my life more into perspective, for sure. As far as living actively, you may still be able to. I am still teaching exercise and playing with my grand-daughter, the two things I love the most. Just take one day at a time...that's all you can handle anyway. Just be grateful for what you have, not what you may not have.

 

Kindest regards,

HONEY

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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

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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

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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

 

 

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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! :)

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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:

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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!

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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

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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)

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