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Can swollen feet be related to CREST?


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#1 Wohali

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Posted 02 March 2009 - 06:27 PM

Last night I noticed the tops of my feet had swollen up. Hadn't been on my feet much all day, so no reason I knew of for them to swell. Overnight the left foot swelling went down but the right foot looks like a waterballoon with toes attached. I put ice on it and elevated it but didn't seem to help. I've had swollen feet before but even when I have broken my foot before I never got this much swelling.

Its actually unreal the size of it and its weird because the tops of my feet have this burning sensation. Also the swelling has caused a capillary or tiny vein to burst on the top of my foot. I also have that sensation in my lower legs of skin tightening like I've gotten before with the CREST as it really affects my lower legs at times.

Could this swelling be CREST related?

I don't know if its related but last week at my physical therapist they sent me home early twice because I came in with burning sensation in my leg and arm muscles which I told them feels like that feeling you get with having lactic acid buildup. But there was no reason to have lactic acid BEFORE I started my exercising. I don't think the physical therapy (PT) is causing these problems though because its only for the arthritis in my knee and for balance issues that I am doing PT, meaning its not an extreme workout. Now I think perhaps this burning sensation in muscles and in tops of feet is CREST or Sclero.

#2 Shelley Ensz

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Posted 02 March 2009 - 07:42 PM

Hi Wohali,

There are dozens of causes of swollen feet. In particular, its worrisome that it is only in one foot and that it is substantial. That can possibly indicate a blood clot, and for that reason, sudden swelling of one foot should always be evaluated promptly. You can look at a long list of possible Causes of Foot Swelling -- but, we can guess until the cows come home but only a doctor can tell what is going on with you.

Generally speaking (and keep in mind I have no medical training, not even enough to safely remove a splinter), sudden swelling of one foot would not be a symptom of scleroderma; however, that is not to say it isn't serious and it is definitely something that should be tended to promptly. Please let us know how it turns out!
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#3 Sam

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Posted 03 March 2009 - 03:50 AM

I think you need to let your doctor know. I agree with Shelley.

Sam
Sam

#4 Peggy

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Posted 03 March 2009 - 04:56 AM

I had the same thing happen to me in May of 2007 and then was diagnosed in August of 2007. We were in the hotel room getting ready for my son's wedding. I went to put my shoes on and I couldn't get them on! I kid you not my feet were the size of small bowling balls. I was so frantic in not knowing what to do for shoes for my dress. We were able to improvise but everyone had me elevating my feet the entire weekend. Both of my kids have medical knowledge and kept checking them and they were solid and weren't swollen due to fluid. It was bizarre. After they finally went back to normal the skin was so tight on them you couldn't move it. It was on the top of my feet by the ankle is where they took the skin biopsy to confirm the scleroderma diagnosis. So it is definetly related to the sclero and I think its brought on by stress. I hadn't done anything different when it happened to me, like being on my feet for a long period of time. I would give your rheumatologist doctor a call and see what they say about it. Let us know as I would be interested in knowing why this happens too. Good luck.

Warm hugs,

Peggy

#5 debonair susie

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Posted 03 March 2009 - 05:29 AM

Hi Wohali,

I wish I had something to offer you by way of solving this mystery, but I really don't!

I DO know what you must be feeling at this point however. As a matter of fact, I'm sure most here would agree that we experience some "different" symptoms that can either wax and wane or once they disappear, they never reappear!

At any rate, I'll be anxious to know what you are able to find out about this mysterious swelling you have going on!
In the meantime, I hope it's resolved soon for you.
Special Hugs,

Susie Kraft
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#6 Wohali

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Posted 03 March 2009 - 04:22 PM

Well the word from the doctor is he thinks its definitely autoimmune related. He ordered a couple days of predisone to see if it responds to the medication and if it does he said its a strong indication of it being autoimmune. He asked me three times if I consented to being on steriods because its something both of us have fought to keep off of. I've also had a long battle with Lyme disease and steriods can make Lyme worse since it lowers ones immune response. Some experts say Lyme can never completely be eradicated from the body. So I said ok two days if you think its safe to take them.

I won't start the meds till tomorrow. By the time the pharmacy had it ready it was evening and the pharmacist said it will keep me from sleeping if I take it this late. The swelling had gone done some overnight but tonight the severe burning pain is back and that horrible skin tightening feeling in my lower legs. I guess others know the feeling right? :unsure:

My phy therapist thought I was weird explaining the skin tightening as if I was making it up. The PT also wanted to know how long this flare was going to last :angry: so she would know how long she has to wait till she can go rough on me again. So I just bluntly said could be one day or could be rest of my life till it kills me whenever that is. Oh, they need to teach everyone in medical profession what autoimmunity is all about.

#7 Jeannie McClelland

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Posted 03 March 2009 - 04:34 PM

Progress of a sort, right?

I'd add sensitivity training along with Autoimmunity 101 for everyone in the medical profession, right down to the Valets, Concierges, and Front Desk people. You could drop a weight on the Physio's foot, you know. Purely by accident, of course! :lol:

If you have a crystal ball that tells you how long a flare is going to last, you're going to have a very long waiting list to borrow it. I'm #1 on the list, OK?

Warm hugs,
Jeannie McClelland
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#8 Wohali

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Posted 03 March 2009 - 05:17 PM

"If you have a crystal ball that tells you how long a flare is going to last, you're going to have a very long waiting list to borrow it. I'm #1 on the list, OK?"

If I can get the crystal ball to working I'll for sure let you borrow it first. But I figure other people will have need for it for non-autoimmunity things. So I've decided to charge a small rental fee for each person who wants to use it to fund my retirement in case the disability case doesn't go through. ;)

#9 Penny

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Posted 03 March 2009 - 05:18 PM

Wohali,

Your physical therapist (PT) sounds a bit like Janet's parents when they gave her until the end of the year to get better. B)

I like the idea of accidentally dropping the weight, but there are other things you can do as well. Like, you know those theraband thingies (multi-colored giant rubber bands) that they use for resistance work? It would be a shame if you accidentally :o lost your grip on one and it accidentally :blink: thwapped the PT on the tush.

The last time I was in PT (prior to my right knee being diagnosed with osteoarthritis) it was to strengthen my knee (in all the ways you should never do it when dealing with progressive osteoarthritis). They were under strict orders to monitor my heart rate and blood pressure (BP) at all times. (They would check it before we started and were not supposed to do anything if it was elevated, but they always pushed to anyway.) I actually had a small heart attack and was hospitalized for a week (not during PT) and went by to tell them on my way home from the hospital that I had to stop PT until further notice. Their response was, "You will not get better if you refuse to do the work!"

Sometimes people just get a one track mind mentality, and if they do not understand what is going on it is irrelevant and ignored because it does not fit into their plans.

I hope that things go better for you and you tolerate the steroids, and as far as the PT goes, they work for you and if they can't work with you then maybe you need to look into changing locations for your physical therapy. There are some wonderful PT's out there that can work for you as well as with you.

Warm soothing hugs,

Penny

#10 Wohali

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Posted 04 March 2009 - 05:27 PM

"Your physical therapist (PT) sounds a bit like Janet's parents when they gave her until the end of the year to get better. "

Could my family be related to Janet's? When I first told my family I was filing for SSD my father asked me to come live with him and my stepmom. But then he said "you know you are welcome to live with us, but I know you will get bored after a few weeks off work so you "HAD BETTER FIND A JOB ONCE YOU GET HERE". Umm.... B) I think that's why they call disabled people disabled and that's why you file for disability because you CAN'T work. He still doesn't get it that I have repeated brain injury, CREST and chronic Lyme in addition to asthma and heart problems and PTSD. But I really just need to pull myself up by my bootstraps and get another job you know and just suck it up. :rolleyes: The last job didn't like the fact I was limping, kept tripping on invisible objects and fell, dropped a $1000 instrument and broke it, plus I kept forgetting "how" to do my work and a few times I spaced out or something and suddenly paniced where this place I was in and that it seems I work here but I don't quite remember how I came to be here. Do you think a person like this needs to be working? :unsure:

I haven't seen the family in over 2 years, but last time I was there dad pushed me around in wheelchairs in all the stores and I hobbled with a cane into the restaurants and they rolled me off the airplane in a wheelchair too, but guess he just hasn't figured out I can't walk well anymore. And when I do walk I fall alot. That's why I am in PT yet AGAIN. I fell twice in 6 weeks period reinjurying myself and then I fell a 3rd time a week into PT trying to put my shoes on.

Reminds me of a good joke a fellow brain injury patient tells people that the 'NB' on her sneakers stands for No Balance.

#11 Penny

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Posted 04 March 2009 - 08:03 PM

Hi, all,

This discussion brought back a memory that was probably one of the most demeaning times of my life. :(

The last time I worked (I can't even remember what year it was now) I was fortunate to find a job that was a 'seated' position, meaning that I would be seated most if not all of the time being an order taker at a catalog sales pet supply company. I was able to get around using just a cane back then and was interviewed by the owner's son (who was the manager) and he knew that I was handicapped and welcomed me with open arms. I felt so lucky!

After working there about two months I was called into his office out of the blue because he needed to have a serious talk with me. It seems that my cane was 'loud' when I walked down the hallway on the tile floors and I would need to work on that. I was mortified and burst into tears after leaving his office and when the human resources director saw me she called me into her office and gave me a lecture on being mature then sent me home for the day to 'get perspective'.

I went out and bought a new cane that did not fit (my old one was an adjustable one, and after time they can make a soft clicking noise) made of wood and replaced the 'foot' of the cane with an over-sized rubber stop. I also slowed my walking, not that I was setting any speed records in the first place, taking care to place my cane silently.

I thought that things had calmed down when I did not hear anything for a few months when one day I was at the copier which was hidden by a partition from the rest of the call center and the owner came in to let everyone know that they needed some extra help on the main sales floor and since we had a full staff at the call center she wanted some people to come out and lend a hand. She did not see me as I walked up behind her to head back to my desk when she said "We have 7 people here, well, 6 and a half really" pointing at my empty desk then laughed. I just stood there as everyone had a good laugh feeling like I was going to pass out, then dropped what was in my hands and reached around her for my purse and headed for the door.

The human resource manager was in the hallway as I was heading out and told me to follow her, and when we got to her office she asked me what the problem was and I burst into tears once more and told her what had just transpired. She told me that I was over-reacting and to get back to work and I told her that I was leaving and would not be back.

I contacted a few agencies to try to get this issue resolved, because I saw it as blatant discrimination and was informed that it was not, instead it was a 'difference of opinion'.

Long story short, people who have never had to personally deal with a lifelong condition that effects every aspect of their life often cannot grasp that it is real and not within our control. They sprain an ankle and in six weeks they are back to life as normal, they get the flu and a week later they feel fine and why shouldn't we be able to just tough it out and get better. They think we must just be milking it for attention. That or they think that we need some "tough love", make us stand on our own and we will learn to take care of ourselves and get better.

Sorry for the flashback post.

Penny

#12 Wohali

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Posted 09 March 2009 - 02:37 PM

Hi Penny,

That story is probably the worse breech of ADA laws I've ever heard of. Or were ADA regulations not in place when this happened? Complaints about your cane making too much noise is just ridiculous. I'd like to know who said that and at what company so I could go smack some sense into them. Only thing is I can't stand up or walk long enough to do that and I don't want to make my hand hurt anymore than it already does. :unsure: But I can whack someone with my cane whilst sitting down. :) I just hate inconsiderate people who can't even spend 5 seconds thinking what it might be like in another person's shoes.