When do I get to 'normal?'

Every day that goes by, I notice little changes for the better. My fingers are squishier, my skin is softer, my swelling is smaller, my brown feet are fading.

The biggie this week is that my shoulder is no longer disconnected. I've been moving, painfully, for two, two and a half years with a shoulder that would not stay in joint, a shoulder blade that pops up and down with every movement and have lost the ability to raise my right arm.

Since January, i've seen a physical therapist whose helped me keep the muscles I do have working healthy.

In July, I started antibiotics for scleroedema, and after ten days, I noticed the muscles in the right arm were getting stronger. Since then, I've been able to gain strength in my right arm. '

Since July, the right shoulder joint has been able to increase movement, and as it has, I've become more aware of 'mass' obstructing the movement of the joint. A week will go by, and I'll notice less obstruction.

As the obstruction is dissipating, I have noticed that muscles I have not been able to use are starting to 'ache' like sore muscles. At that point, I've asked my physical therapist to give me an exercise for that specific muscle to encourage it's health. Slowly, the muscles behind my shoulder blade have become strong, but the shoulder blade still pops up, and i can't raise my arm.

Over the weekend, I became aware that the muscles below the shoulder blade were suddenly more sensitive, so I laid in bed and tried to flex them. At first they were really weak, and I couldn't get movement out of them, but after about ten tries, they started to move. Later, i gave it another try, and by then, there was some strength.

This morning, I tried raising my right arm, and the shoulder blade did not pop up. I can't raise the arm yet, but I'm thinking it is not going to be long before I can.

The weakness in my neck is substantially less, as well, which means that the muscles are controlling my wobbling head's movement more and more. i can't raise my head when I'm leaning forward, but i can feel that the swelling in my neck is dissipating and that there is just a little left. I wish I could think it away.

I'm so much better than I was 90 days ago. I'm getting closer and closer to being 'normal.'

By lindzeg
Posted October 20, 2009 at 10:08 pm
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I have mixed connective tissue disease and they are treating me for Scleraderma & Raynauds. I have really wanted to try antibiotic therapy. How did you find a doctor to try it? My rheumatologist says no, but I have been trying so many drugs for the last three years. The methotrexate and prednisone I am currently on helps with my joint pain, but my my hands and face are still so tight and swollen...my lips are also so tight they are almost gone. I am trying to find people that would recommend antibiotics. Any info you can share would be wonderful! Thank you!

By M_McF_M
Posted October 20, 2009 at 11:47 pm
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I found out about ap almost by accident, and when I googled it up popped roadback.org. This website is a bunch of people who have sought ap treatment for a variety of autoimmune diseases. They share who their doctors are, and if you look on the website, there are doctors from around the world listed by location, so you can find someone in your area. You can also email the site administrator and they'll get back to you with a doctor, if there isn't one exactly in your neighborhood.
There is a lot of other information there as well, that might be helpful. And there is a chat board that the most positive and supportive people you'll ever meet.

Obviously, ap is helping me. I encourage you to explore the option. If you read the patient testimonies you'll be very impressed. I emailed every last one of the scleroderma patients about how long they were sick, how long it took for the ap to work, and if they were still healthy. They all got back to me promptly, and that is the kind of people they are, really, really helpful.

Feel free to contact me any time. My name is Margaret

By nyitalian
Posted October 21, 2009 at 7:00 am
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hi m, i am so happy you are doing well, i never no when to call you if it is a good time, god bless you, i started my aqua therapy it is great the warm water feels fantastic,i am not any better about the same, i will call you after i go to doc. oct. 30, talk to you later, ellen

By waimea
Posted October 21, 2009 at 2:31 pm
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Hi nyitalian, my water aerobics has really helped me and since I started on Sept. 8, my strength and mobility has increased so much that yesterday my instructor mentioned it. I couldn't do half what I am doing now in the water....but I also started with my antibiotics and am very fortunate to have a wonderful primary care dr. to help me. I have had testing done with my lungs, liver and am on enaparil to maintain my blood pressure. I believe that he will help me through my worst times with this disease/condition. I am carefully watching my diet and I am also on spirulina pacifica (seaweed from Kona, Hawaii) that boosts a persons energy and supports the immune function. I still have health issues since this was in the making for quite a few years and won't disappear in a month, but I certainly have hope now and with the input from all of you on this site, thank you so much. Bev

By Chosen
Posted October 21, 2009 at 9:04 pm
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Hey Margret -It's me. Are you taking magnesium and calcium for your muscles? I think it is helpful but it is a balancing act finding a time that it won't block the ap Lynn

By M_McF_M
Posted October 21, 2009 at 10:40 pm
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Lynn,

No, I'm not taking calcium or magnesium for my muscles. I am only taking what my doctor is recommending, some of which is based on my labs.

What I am taking is CoQ10 and Beta Glucan. If I do not take the CoQ10 my muscles do not respond as well when I exercise; there is a qualitative difference in the effectiveness of the work out. The Beta Glucan is supposed to help with the sclero-edema-causing bacteria as it is eradicated from my system.

I am not calcium deficient or magnesium deficient, according to my labs. I have been extremely low on vitamin D which my Dr. has added to my supplements.

The other things I am taking are Acetyl L-Carnitine, which is supposed to help with the brain-fog and Omega 3, and DHEA.

I noticed during Lent, I am a practicing Orthodox Christian, when we ate a vegan diet for eight weeks, without olive oil, that I felt much better, and the progression of the disease slowed. Then summer came, and I had a lot of stress and we bbq'd and things accelerated.

Now, I am eating chicken and fish and red meat (1x/wk) now. But, I also noticed that when I ate ice cream or butter that things accelerated as well. A good friend advised me to lay off wine because alcohol has a severe depressant effect on the immune system, and when I started my ap, I stopped wine. Before ap, I also developed a sensitivity for the nightshade family -- tomatoes, potatoes and eggplant. I does not seem to be a problem now.

I think that diet and exercise keep our bodies healthier to fight off what is happening to it. A healthier person can fight off illness, and so, if I do everything
I can to be as healthy as I can aside from the sclero, than I think, I'll get better faster. Does that make sense?

I get to start the dance-therapy tomorrow. They say I'm not ready for salsa, but they're going to start me with rumba and cha-cha, and my PT says I am to work on 'control.' I really do look like parts of me are out of control at times, and they are...but I'm getting better, and that's the important thing.

Today, working on the weight machine, I pull down, and today, my shoulder muscles took over from my arm muscles in doing the work. That was unique for what I have been doing since I started. Very encouraging.

By M_McF_M
Posted October 21, 2009 at 10:44 pm
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Hi, Ellen!

I'm on the run about 10:30 a.m your time, and get back about 2:30 or 3:00 your time. The last week and this week have been a bear because I've had to run the boys to the dentist, the doctor, and to tutoring after school. That get started around 6:00 p.m. your time. Best time to catch me is between 3pm and 6 pm your time. Tomorrow is good. I'm taking off for the weekend Friday, back late Sunday night -- a girls weekend with my mom-in-law, three sisters in-law and 2 nieces.

You'd better call me after the 30th!!!!!!! You know I want to hear all about it!

M

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