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I feel like it is happening all over again

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#1 miocean


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Posted 02 June 2016 - 02:07 PM

All of my symptoms from before diagnosis seem to be back. My hands are curling and I have calcinosis on my knuckles. So painful and a loss of mobility. My hands are inflamed and so are my upper legs from my knees to my hips. My back feels really tight and it is hard to reach up. I can't bend down to pick up something from the ground. This is how I felt in 2004 when I was going from doctor to doctor trying to find out what was going on. 


For those of you who may not know me, I had sudden renal failure in 2004 and received a kidney transplant in 2010. It was like a miracle and everything improved. By 2013 my lung function declined and I had pulmonary hypertension so I applied for a lung transplant at two centers but was turned down. I also have really large calcinosis deposits on my buttocks making it very uncomfortable to sit.


This past year was very rough on me health wise. A year ago April I got food poisoning and suffered with severe diarrhea for months. Even after 5 days in the hospital and numerous tests they found nothing wrong. Then in December I had fluid on my heart and had a pericardial window created. 9 days in the hospital. Doctors started switching my medications and adding things, one a very dangerous drug that I have just managed to get off of. My breathing has worsened. I spent most of the past 6 months in bed.


I am hoping this is all medication related, compounded by the inactivity. I am as frustrated as I was when I was seeking a diagnosis. I have a scleroderma specialist, and saw her a couple of weeks ago. She said my skin wasn't hardening again but couldn't tell me what was causing the tightness. I am going to physical therapy and doing hand exercises. I feel like all I've been doing is going to doctors. I am so emotionally and physically drained.


Ever the optimist, I am certain that once that nasty medication really gets out of my system and my other medications are adjusted I will feel better. It is just very difficult right now...



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#2 Joelf


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Posted 03 June 2016 - 02:26 AM

Hi Miocean,


I'm so sorry to hear that your symptoms seem to be returning with a vengeance at the moment. I can understand how frustrating it must be for you, especially as there seems to be a "groundhog day" feel about the whole thing, having gone through all the symptoms and tests before and not feeling that you've made any progress.


Unfortunately, I think that scleroderma is such an unpredictable disease, that even the specialists are unable to anticipate just how it will pan out.


I do hope that the medication is some of the problem and that you will improve and feel much better very soon.




My best wishes to you,

Jo Frowde
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#3 Kathy D

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Posted 04 June 2016 - 11:45 AM

My Heart Goes Out To You Miocean.

Diffuse Scleroderma Diagnosed March 2009

#4 Margaret


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Posted 05 June 2016 - 03:08 AM

Hi Miocean; it's so hard reading sad posts, but it's a must in life; confronting the good with the bad.

We're all here to support you; even if we're virtual friends through an invisible connection called the web.

My heart goes out to you and I will keep you in my thoughts.  You have always been a strong inspiration to me.


:flowers:    :hug-group:


Take care, Everyone.


#5 Shelley Ensz

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Posted 05 June 2016 - 06:47 AM

Hi Miocean,


I'm really happy for only one part of your situation, and that is, that you are posting here. We all really miss you when you are offline for any reason!  So come what may, good or bad or indifferent, please keep our connection as best you can. (And that goes for all our members.)  We aren't here only for the good times, we are here for it all, or what sort of support would we be?


As you know, the natural course of scleroderma is to wax and wane. And wax and wane. And wax and wane. Like a roller coaster ride, with all the screams but none of the fun!


Unfortunately, the waxing part brings with it all sorts of stresses, and stress exacerbates inflammation, and away we go again. I try to pick away at the stress, doing every tiny thing I can think of to reduce it, as I figure, even a 1% reduction will eventually hopefully add up to something. Capturing time for living, and enjoying, becomes increasingly difficult when we are sick, and that frustration adds to the burden of trying to deal with the never-ending rounds of hospitals and doctors and tests.


You are doing absolutely marvelous to be hanging in there still, despite everything that you have gone through and are continuing to go through. Like you, I figure, the doctors and the treatments are just part of the equation for our well being. The other part is the tiny bits of goodness and little blips of joy and tiny dabs of happiness that we can work into our life, but we have to fight like crazy to find and get and cherish them, and they are so easily lost in the shuffle!


I know you're doing all this list below, and lots more, but some of this could be fresh ideas to newbies who might begin experimenting with their own stress reduction techniques.


This list is for anyone struggling with the waxing part of autoimmune disease, just notes from my own experiences of tiny things that have helped me, and I'm sure you, and others, will be able to add to it mightily!


In keeping with our guideline to avoid religious connotations, here is my layman's version for ways that I try to reduce stress in order to reduce inflammation:


1. Forgive everyone, for everything (but remember the lessons, and the people who are best to love only at a distance).  I pull up a thought of anyone or anything that hurt or angered me, face it squarely, offer the thought forgiveness, and watch it get tiny as dust and then blow away on the wind.  Some people or situations require multiple breezes, but that's just fine. It doesn't matter if it's from today or many decades ago. If it's there, if it's harboring resentment, it's impairing my stress level. That increases inflammation. So, away it goes! 


2. Ask for my energy back. Okay, this one is weird. Sometimes the forgiveness thing doesn't work for me. Maybe I'm still too mad to really forgive, which is only human. Sometimes forgiveness is a process and requires time or counseling (even for me). So what I do then is, I picture the person or situation, and ask it to please "give me my energy back".  I don't care if the issue still exists or still needs resolution, I just need the energy back that it is absorbing.


I imagine cutting the cord of energy between us that is draining me. I picture the energy being restored to me. It's amazing but then right away another person/issue will then pop into mind that is depleting my energy, so I will ask it for my energy back. I know it sounds beyond silly and not something to discuss at the dinner table lest people think you wear an aluminum hat, too. But you can quietly do it and nobody will know the difference.


3. Find and do a one or a five-minute vacation, and take as many of them as you can cram into a day.


For one minute, I do deep breathing or visualize my favorite relaxation picture. If you don't have one, you can borrow mine. I recall sitting under a birch tree, on a hill overlooking a lake.  I hear the waves lapping, and loons calling. I smell fresh wintergreen, moss, and pine. Each outgoing wave carries away one of my cares or fears or worries, and each incoming wave restores my hope, my peace, and my energy. Breathe in relaxation, breathe out stress. Breathe in fresh minty air, breathe out toxins. Breathe in calming waves, breathe out cares.


I do small stretches when I'm waiting for things in the microwave. Neck stretches are the best for relaxation!


Yesterday, I took off my shoes and walked barefoot in the grass for a few seconds and tried to crystallize the memory of it. Anything savored can be a mini-vacation -- even peeling a carrot or cutting an apple, if it is done slowly and attentively enough. So, I try to slow down and savor when I need to relieve stress.


4. Make nice long lists of enjoyable things, or things I'm grateful for, to drum up more of a relaxation response. When I can't do anything at all, I can at least make a list or read the list of things that make me feel better. I find that if I put my mind to it, I can always do something on the list, even if it's just taking a nap, or having a cup of camomile tea.


5. I find what makes me laugh the hardest, and seek it out in doses. I view laughter as a medical treatment and literally schedule it into my week (I prescribe a healthy dose, every other day, for myself), whether it's watching funny videos, reading a humorous book, hanging with a funny friend, or going to a stand up comedy show. Even forcing laughter, when there is nothing at all to laugh about, induces a relaxation response. I just try not to do that when other people are around. But laughter yoga is based on this premise, that it is not necessary to be inspired, in order to laugh and benefit from it.


There now, I've exhausted my chipper little ideas for the day. It's okay to just laugh off this silly list.  I guess I just want to say, there are many times with illness when we can't do anything more medically at all, and neither can our doctors. But we can take many tiny steps to induce a relaxation response and that reduces inflammation, and also helps reduce attacks of Raynaud's.


Plus, with illness, we need at least ten times more stress reduction than the average person, because there is no end to the stresses and some of them are on a massive scale, like you've continually encountered, Miocean. And you've set a fine example for all of us in overcoming one major hurdle after another. Even if it's just to explain your predicament on the forums, that's a great stress-buster, right there, and another wonderful method for letting go, too.


None of win the mortal game of life, in the end, but many of us still manage to win it all along the way, like you, and the vast majority of our forum members, by basically letting ourselves feel defeated, from time to time, but not actually be defeated. Somehow we hoist ourselves up together and make it for another bit, as best we can. It's not over til its over, and we are entitled to all our feelings about all of it, along the way, and to share them here.


Thank you for setting a good example for our other members, on the importance of sharing our journeys with each other, all along the way.



Warm Hugs,

Shelley Ensz
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#6 judyt


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Posted 05 June 2016 - 01:55 PM

Hi mio,


Sorry to read that it is all getting to you again.   We all know how debilitating it is and all this constant visiting with doctors can get to be too much.  However it is necessary and I trust you will find that you start improving soon.


I too have been a bit absent from the forums lately and am tired of the constant round of hospital visits and stays but so far I can see the virtue of getting as much help as I can to try to alleviate the problems which occur.


Don't lose your sense of humour, as Shelley has said above it is one of the best therapies to be able to laugh.


Love and best wishes to you


#7 Buttons


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Posted 06 June 2016 - 07:17 AM

So sorry to hear about your symptoms and sending lots of good wishes to you. We are always here to listen.



#8 miocean


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Posted 07 June 2016 - 02:30 PM

Thank you all so much.


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