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Feet swelling? (Read 9121 times)
Bebop99
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Feet swelling?
12/13/13 at 10:06:04
 
Is feet swelling a mast cell disorder symptom?
After I have a reaction to a food, esp. high-histamine foods, my feet get a bit swollen. I test this out by trying a pair of flats on before I eat the food and a bit later...shoes are usually tighter. However, I also am hypothyroid and am not sure if that is the primary cause as it seemed to improve when my thyroid meds were changed.
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Starflower
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Re: Feet swelling?
Reply #1 - 12/14/13 at 06:17:36
 
It has been for me.  I'm hypothyroid too, but the swelling didn't start until after the mast cell disorder kicked into high gear.  It's much better now that I'm more stable... and I'm taking vitamin K (to counteract the blood-thinning effects of degranulation)... and I'm getting regular exercise.  

You should see my ankles when I travel though! Shocked

Heather
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KatFromMD
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Re: Feet swelling?
Reply #2 - 12/15/13 at 04:13:53
 
Mine not only swell but also turn purple due to blood pooling in my feet.  I'm also hypothyroid but didn't have this when I was younger (and hypothyroid) and did start having it when my mast cell issues became more apparent.  During the years before I got the mast cell diagnosis,  when all the "standard" tests came back normal, the purple feet was one of the few things that doctors always noted and thought indicative of *something* going on with me, even if they couldn't figure out what.

I think it may be due to both blood thinning from heparin and also vaso-dialation (your veins opening wider, reducing your blood pressure) from degranulation.
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zippy890
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Re: Feet swelling?
Reply #3 - 12/16/13 at 02:39:06
 
My feet and ankles are "rusty", like I don't wash them (but I do).   The color change is quite remarkable.   One physician commented that it was probably red blood cells leaking out of my blood vessels down there, and depositing iron in my skin.   I thought that kinda made sense.

When I'm having a good spell, the discoloration begins to fade, and gets worse when I'm not.

I think with mast cells, anything is possible.

Todd in Tenn.
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mikev
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Re: Feet swelling?
Reply #4 - 12/16/13 at 04:50:05
 
I like Kat have same purple feet issue, but mine do it pretty much  most of the time. A spell doesn't really make them turn, so maybe it's a different issue. Like you said when you have masto anything is possible. One thing I know is when they turn purple in a doc's office no matter what type of doc it is it gets their undivided attention!!!
mikev Grin
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KatFromMD
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Re: Feet swelling?
Reply #5 - 12/16/13 at 08:52:09
 
Mike - Unless I've been doing really well for awhile (don't remember the last time that happened  Sad) mine are purple any time I'm sitting or standing still for a few minutes.  I think this is because I'm a leaker, so there are always mast cell mediators running around my system, dilating my blood vessels and lowering my blood pressure.  Often, my feet start to feel quite fat and really hurt from the blood pooling, and I think that does vary according to how full my "bucket" is.  I spend a lot of my time with my feet propped up.   Wink

Funny, but very few docs got too excited about it, but I think it did make them more willing to believe there was something wrong, which helped all those years before I got a confirmed diagnosis.  They all agreed that no one's feet should be a lurid purple color!
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mikev
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Re: Feet swelling?
Reply #6 - 12/16/13 at 10:30:21
 
Kat:
I'm a leaker as well so it makes sense both of us would have same issue. My derm doc that I went to before I knew what I had  is the one that really freaked out. Thought I had blood blockage of some type & wanted to call an ambulance until he calmed down some. Obviously he wasn't the right doc to be at. I luckily can keep my shoes off a work. At home wear sandals a lot to keep pressure at minimum on my feet & do prop up when I get a chance. The thing that really makes them purple is when I used to try to cool down by soaking them in cool water. Wow did they turn purple, but didn't hurt a lot more nor did it help the pain.
MikeV
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Riverwn
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Re: Feet swelling?
Reply #7 - 01/01/14 at 08:38:08
 
Yes its a mast cell symptom. How do I know? I have diabetes2 also so I see a Podiatrist every month. He saw the red rusty color and said "Your red cells are breaking apart." He did 2 tests on circulation in my legs, results, circulation is great and I have a baker cyst behind each knee.

Now I also have skin writing on one foot that has been there over 1 year and my feet turn purple--which is Secondary Reynauds Syndrome. He told me do NOT wear rings (It affects my fingers too sometimes turning them white with sudden swelling and itching). I also have horrific neuropathy from Masto/Diabetes/Sjogrens Syndrome/Reynauds where I do the "firewalk". I take Neurontin for it and Mirapex for really severe restless leg syndrome.  

The problem (with me at least) is this--Mast Cell Disorders open the Immune System for other autoimmune things to affect you. Hope this helps some of you.
Hugs,
Ramona
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mikev
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Re: Feet swelling?
Reply #8 - 01/03/14 at 03:06:10
 
ramona:
I have same firey feet syndrome. I tried neurotin for over a year with little success & some mental issues as the docs try to load you up on it. Also tried lyrica & cymbalta. I liked cymbalta the best but have chosen to just tough it out with tramadol & using creams of various kinds. Usually ones with menthol work some or the gels that are otc for skin burn or benydrl gel. A question for you is does your feet not hurt as much when you lay down? Mine work that way & it's sure not neuropathy as i can feel the slightest things touching my feet. also what is skin writing that you talk about.
mikev
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Riverwn
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Re: Feet swelling?
Reply #9 - 01/03/14 at 08:58:15
 
Im on Neurontin but we had to raise the dosage to 800 mg 3 times a day. It helps me tremendously. I cant take Tramadol, it triggers me.  That menthol ointment you talk about? Is that the Lidocaine with spearment scent? I love that, I also use it on other areas too when they  are painful.

You said, " I can feel the slightest things touching my feet". I do that sometimes and it is so painful. I wear fluffy footies on my feet and even they feel horribly painful like broken glass, when my nerves are triggering. My poor hubby will offer to rub my feet and I say, "NO!" even the slightest breeze is painful. Laying down helps, just not much.

I have skin writing that looks like any picture you see of it--like swollen skin that has not broken the skin. I also have another type of "scratches" on the top of one foot that looks like red swelling Z or M back and forth, red, but not open. I bleed under the skin when I react and I think that is how these particular scratches occur.

I also get swelling in my legs and am on Lasix daily for it. I also used to get swelling in one leg only and with me, it was the bakers cyst in the back of my knee. It comes and goes and elevating it helps. See your DR if you think you have one. See your DR, period if you have swelling in one leg, Lisa is right, do not delay.

OK this may be particular to me alone, I do not claim the above as masto symptoms but I hope this helps someone Smiley
Hugs,
Ramona
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mikev
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Re: Feet swelling?
Reply #10 - 01/06/14 at 07:43:29
 
ramona:
Glad that neurontin is working for you. I actually was on it when problem was just my feet & went full systemic. Tramadol doesn't trigger me but the other pain killers like oxy all did, even just pain aspirin.
The stuff I actually use is a gel with no smell, like it better. Lidocaine does work, temporary but does.
My feet are like yours. My neurologist, when at first thought had neuropathy, tried the prick test & I swear I could feel the needle before it actually hit my skin. The under side of my arms are similar.
I thought I had it bad until my wife can down with scleroderma. Her immune system is trying to kill her fingers. Fingers looks terrible & looks like tips of some are dead skin & really painful. One doc even suggested cutting them off at first knuckle. I found her a local support group, hope she goes. Support groups are so important. But can only lead a horse to water.
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