Weird body and joint flushing- any ideas?

[Twickle Purple]

I was flushing like i normally do today, my usual doctor was away so i had a different GP, i had to have my shirt off for him to do my blood pressure and check my lungs and heart and it makes it stand out a mile because my trunk is pale as can be and my chest and arms (and legs) are blochy and red, his response was... "wow! that is really weird!", So i guess it's not so common.

:x Don't these fellows know when to NOT make comments like that? It doesn't show much sensitivity, IMO. I would have felt a little freaked actually. Especially since no one has been able to ascertain what the heck is going on!

Sorry to hear the esophagus is acting up again. Did you find any change with your flushing while taking the PPI?

[Froggirl]

I had brought up my flushing before he commented on it, when he was asking about my breathing i'd said i felt a little light headed but that often happened when my body flushed. Oddly his comment actually made me feel better because i was starting to wonder if it was just kind of normal, and that maybe i was making a fuss over nothing.

When i was last on the PPI i did feel that i flushed more, but at the time i was also taking strong painkillers and drinking liquid anethetic (which was bright pink and def made me flush like crazy) and eating a completely different diet which mostly consisted of hospital sustagen. So it was hard to tell, i'll have to wait and see what happens this time. Have you heard of PPI causing flushing?

[Froggirl]

Well, i still don't have any answers, did any one else with body flushing follow this up with their doctor and find anything out?

What i thought was pain from where i'd had the ulcer turned into contstant wheezing and coughing by the time i saw the endorcronologist. His list of possible causes for that and my body flushing was:

mastocytosis
carcinoid syndrome
hyperthyroidism
abnormalitity of bone marrow/lymph nodes
wheat allergy -coeliac disease

So if anyone else with body flushing hasn't already done so it would be worth getting checked for these things. Because what i've found in doing the rounds of specialists is that body and joint flushing is really unusual and not thought to be anything to do with rosacea.

I'd already been checked for all of these by my GP, multiple times now. Apparently though i'm still not 100% in the clear because in both mastocytois and carcinoid the chemicals that cause the symptoms (histamine and serotonin) break down in the body fast so can't always be caught in the tests. I got the results from my Gp rather than waiting another 8 weeks, and the speacilists said that if the tests come back clear he is out of ideas. So i'm not sure what happens next though, it seems the problem with rare conditons is that even good specialists have so little experince with them.

So the only explaination that i can come up with is that i have some kind of disease i've been tested for but it's not showing in the blood work (like mastocytosis or autoimmune disease) or else it's something really really rare like automatic nervous system dysfunction or erythromelalgia, in which case i have no idea how a diagnosis is made, seeing that the top neurologist in my state said he had never seen anything like my body flushing before and had no ideas about what it could be.. :?

It's all just so stressful and it's getting me down a bit at the moment, overall i do a pretty good job of staying positive and not worrying about it all and convincing myself that i can get a new job (my current jobs over in four weeks) and be fine, and then i have a terrible day like yesterday where my hands knees and chest all flush and swell and hurt and i just feel totally overwhelmed.

I've just started singulair for my wheezing though and there is a chance that it will help my body flushing as well, so fingers crosssed.

[Melissa W]

Hi Kate,

I'm so sorry that they don't have a handle on this yet. I can imagine how frustrated and apprehensive you must feel.

There is always the option of getting a 2nd opinion from another specialist even though I know going through the whole process again is not palatable.

Why is there nothing like that TV show House. Where there is a team of specialists brought in specifically for the case stumping all the other doctors. There must be something like that at the major hospitals.


Even though all your tests turned up nothing so far, that could be a good thing.
I am sending good thoughts and positive vibes your way!

All the best,
Melissa

[Froggirl]

Thanks Melissa. I actually felt better watching house the other night because i thought even then they can't always come up with the right answer straight away!

I feel so much better already just for venting! It's such a hard thing to explain given that nobody knows what it is that i haven't told many people at all. It's good in one way because my work mates or boss or friends not knowing about it means that i don't talk about it or focus on it as much which does help, but i think the downside is that i think i end up feeling more stressed when it's flairing up badly because i keep it all to myself.

It is really good that the tests have all been negative, especially carsnoid, and it makes me more grateful for what i do have. I guess i just need to get better at not stressing about it all, afterall there really is a chance that what i'm experincing is just some annoying but harmless condtion, even if nobody know's what that conditon is!

[Melissa W]

Hey Kate,

I know exactly how you feel. It really helps to vent and get all your frustrations, worries and aggravations out. And you're right. It is so much better to vent to people who understand what you are going through because they've been through something similar. It is better to keep your work life less personal and more business. Much more professional that way and also you don't feel as if people are pitying you which could get in the way of your best performance on the job.

Also, some of my friends understand what's going on but not in the way you guys do. Plus, I like to focus on being as "normal" as possible with them because I need that in my life too. Where you can just be the way you used to feel before all this crap.

I always feel better when sharing my feelings here, with people who understand and empathize. I wish you all the best and am here whenever you need to have a shoulder to cry on or someone to just listen.

Best wishes,
Melissa

[drummond]

That flushing article is the best one i've read, so glad it's useful, i think TP actually sent it to me orginally!

My chest pain/tightness got a lot worse over the last few days so I went to the doctors today to get it checked out and i was very glad to find out that my lungs are fine, it's just my oeophagus again, apparently after ulcers it sometimes takes up to 6 months to fully heal and is very easily damaged..i guess even more so after 6! So just back on protein pump medication for another couple of months.

I was flushing like i normally do today, my usual doctor was away so i had a different GP, i had to have my shirt off for him to do my blood pressure and check my lungs and heart and it makes it stand out a mile because my trunk is pale as can be and my chest and arms (and legs) are blochy and red, his response was... "wow! that is really weird!", So i guess it's not so common.

Say froggirl please don,t be alarmed as I hesitated to write this post but you sound to have a slightly similar condition found in pigs and occasionally and rareley found in man its a form of blood infection varying from slight to severe caused by bacteria called:Erysipelothrix rhusiopathiae.
It it responsible for causing swine erysipelas. It just maybe that in the blood tests this organism was simply not even considered and therefore excluded from the test. On the news this week doctors unfortunately failed four times to notice a patient had blood poisoning.

[Nikky]

Hello,

I don't write much, mostly just read... anyway, Froggirl, I have something for you to think about. I too was tested for celiac and it was all negative. But once on a diet I feel much better. I don't think this is rare at all. Its probably gluten sensitivity, that precedes celiac disease. Celiac is defined by the damage to the villi in the duodenum... but what about before this end stage? Anyways, I feel better now that i am on a diet for only about three weeks. My face is not puffy in the morning, the redness is maybe a tone less offensive... I never thought I had problems with my gastrointestinal tract, but now I see it can be different. I was just used to what it was like for me since I was a kid. I know what I feel and the negative test does not change that. So my suggestion would be, try a celiac diet for a couple of weeks. It will not hurt you in any way, it is not expensive if you don't start buying expensive wheat substitutes.. just eat what is allowed and see if you feel different. In any case I wish you best of luck!

Nikky

[Froggirl]

Thanks Nikky, i have tried that briefly in the past, until my doctor told me that i couldn't cut it out until celiac was ruled out. I might give it a go again now, i don't eat too much wheat anyway though, how long did it take until you saw a change?

Well my doctor and specialists are now totally out of ideas, my doctor referes to it as a WTS- weird shit thing! The good news is that all serious medical condition have been ruled out, they just think all my blood vessels have become unstable. It could be something rare and hard to diagnose like erythermyalgia or cutenous mastocytosis, which should becaome clear in time, or just be something weird that may go away in time.

Singlair (combined with the H1 and H2's i already take) is the last thing my doctor has to try and so far it's working, my asthma has gone and my joint flushing has lessened considerable. So hopefully this will keep it under control. So if anyone else has similar symptoms these medications could be worth a try.

[Nikky]

Hello Froggirl,

After I quit eating gluten (after finally all the tests were done etc) it took about three days for the effects to show. First of all, no food gives me gas now. Before I had problems with specific foods like cabbage, beans, the usual.. funny enough, no food has that effect on me now. I did a test with three plates of cabbage soup (worst offender before gluten free) and a bowl of baked beans in one day. Nothing much happened. I get diarrhea the next day after eating something containing gluten now. The second effect was that I don't wake up with a swollen face any more. I used to wake up with puffy eyes and my cheeks would be sort of.. wrinkled.. cause my face was swollen and you could see the creases from the pillow in it. This only took a couple of days to show too. My mother said I lost weight, but in fact I have not lost a gram. The skin on my face has always been red and dry, so I had to use specific creams etc... now I am using a cream that is less oily than before, so I see that as an improvement. I think my skin in general is less dry now. I almost forgot the most important thing. I don't get brain fog any more. I used to be sleepy all the time. I could wake up, eat breakfast and go right back to bed. I had to fight sleep constantly, especially after meals. I could not lie down to read a book... I would fall asleep before I would find the right page again. This for me is the biggest change.. not being sleepy after meals. This alone could convince me, that I need to keep up with the diet. Also, I wanted to wait with the diet before the tests, so I ate two pieces of bread every day for months before the tests and I have never felt (or looked) worse.