I Need Encouragement...yucky Day

[Godsgal]

Hi all, I feel so overwhelmed by this condition. Some days I wonder if this is even what I have even though I know it is. This condition came on me so suddenly. I mean like a giant bomb went off and all the mess from it hasn't gotten cleaned up. I went from extremely healthy and able to do a lot to shortness of breath with minimal exertion, needing a wheelchair, and a whole new body with very limited abilities all in a day. Does it really happen like this?

I'm very concerned about this Churg Strauss syndrome because of my breathing difficulties with very minimal exertion. And I have high eosinophils but not high enough to be the eosinophilia. I know it has an allergic phase and mimics the mast cell stuff. Any thoughts on this would be helpful, how it's diagnosed, etc.

I'll have good days where I do okay....I do a lot of sitting but I'm able to do more. And then it's that time of the month or I run into some chemicals somewhere unwittingly and I'm up all night chugging benadryl and unable to lift my arm for a glass of water. What in the world? I don't get it. I don't go into shock like some people with mast cell problems. I'm so thankful for that. I just wonder if others with mast cell activation & POTS are using wheelchairs and barely able to do at 30!

I'm having a rough day and I know God will see me through it. It's a constant struggle and my faith keeps me going. But bad days knock me down hard and I cry and I just want to get better for my boys.

My current meds are Singulair 10 mg twice a day. Zyrtec 5mg in the morning and 10 mg at night. Midodrine 7.5 mg three times a day. I know I was once considered under medicated on here for the mast cell stuff. Is that still the case?

I know I have to go one med at a time very slowly. I'm in the middle of moving and don't want to change my meds b/c of any potential reactions but I'm not doing so hot either way you look at it.

I know when people first get POTS it's awful and it gets better as time goes on sometimes. Is that the case with this condition too (the mast cell stuff)?

Any help would be so graciously appreciated. I'm struggling today....

[lieze]

Is Churg Strauss something that you've been told you have?

I ask this because this is what I do-I start feeling bad and then I start to imgaine certain conditions I may have...then I panic and feel worse. I get into a loop with the feeling bad and then the fears that come into my mind.

The breathing issues I experienced and they were down right painful and concerning but they have improved.

I went through a period of hyperventilating before this improved.

To avoid that you might start practicing your breathing now.

Notice your normal pace and learn to intentionally breathe in that pattern just in case you end up with hyperventilation problems like I did.

I cannot read an article about hyperventilation syndrome I think it's called without starting to hyperventilate.

The major thing that stands out to me is just how crappy you are feeling and the more I read here that just seems to be something everyone experienced. It just can sometimes manifest in different ways.

The one thing I would encourage you to do is keep reporting it. Either to your local doctor or an email to Dr. Afrin. I think it would give you peace of mind to get the thumbs up from him.

Both being so debilitated and then the drastic change from who we were before is very hard to adjust to.

I still have dreams of getting at least some of my life back.

[samannran]

Hi, I'm sorry you are feeling so discouraged right now. It is understandable. I don't have mast cell issues that I know of, haven't been tested, but I have PAF. I can relate to your feelings. It's hard to be young and deal with needing a wheelchair. I'll be 35 tomorrow and hate that I need a scooter to go out with my family. For me, PAF didn't come on immediately. I started fainting at 14, was diagnosed with NCS at 27. Then I started progressing, so the diagnosis got OI added to it, then PAF as other systems started failing. I am worse than last year and wonder when the progressing will end. It's normal to mourn for the active life you have left behind. I sure do! At the same time, it helps me to accept what my life has become and live it the best I can. That's easier said than done, but once I accepted my life for what it is, I became a happier person. Also, I watched a close friend die with ALS at 37 after battling it for five years. That changed my outlook on life. I hope it gets better for you. This is a difficult illness to battle. It robs us of our normal and makes us change every aspect of our lives.

[Sarah4444]

Hi Jared,

I'm so sorry you are having such a hard time right now. All I can say is that not too long ago I felt exactly the same way, and things seem to gradually be getting at least somewhat better - it has taken time, meds, and exercise (which has been so hard), but I am seeing some improvement and have fewer days now like you are describing. I'm still far from normal, but at least can breathe again, empty my dishwasher, take my kids to the park once in a while for a short time. It's still very unpredictable and up and down.

A small dose of doxepin helps me at night, and one thing you might think about is Nalcrom/Gastrocrom. It takes a long time to work and has subtle effects - I had thought maybe it wasn't helping me, but I stopped it for a couple of days to do a urine collection and got terribly itchy and felt quite unwell by the end of day two. I also started doing better when I added salt capsules to each meal. And have you had your thyroid looked at? It seems like so many of us are hypo.

Hang in there. I know how hard it is to be so sick and helpless when you have little ones depending on you. But it does get better, at least to some degree.

Sarah

[RockiesGirl]

I am trying to offer thoughts of encouragement to you..... ;o)

Just some thoughts/ideas:

Assuming you are in the states or somewhere it is Spring now...

Go sit in a chair (outside if you can manage, if not, by an open window) and relish in the beauty of our world. Listen to the birds, watch the trees sway back and forth, Look up and view the clouds...try to make out the shapes and watch as the clouds change into different shapes. Just let yourself/your mind go, float into a world of beauty for a little while.

If it is better at night (I did this last night) set up a chair or a cot for that matter, or even a sleeping bag...have someone help you ;o) Go sit under the stars, identify O'Ryan's belt, the little dipper, the big dipper and whatever else you can find. Watch the planes as they pass through the night...wondering where all the people are off to. Imagine yourself on that plane, just as happy as you can be, feeling well, with your family.... Watch the clouds as they distort the star spangled sky. Listen to the sounds of the night...

Lastly, if you are having a day where you can't even do this... Turn on National Geographic Channel/ Animal Planet or plug into the internet and view... Watch the beauty through the camera lense or just let it be it the background while you drift in and out of sleep.

Try to clear your mind of the bad (I know sometimes it is easier said than done) Center on your beliefs, let them hold you, send the bad to them to take care of for a little while... Relish in the beauty of YOU!!! Your good memories, your loves, your children...etc. etc. Cry if you need to, but hold the beauty of our World close to your heart as you do.

Hope this helps, it is what I try to do when I've reached the yuck day... And a lot of times it seems to Help!!! Also, sometimes my kids come out or come to my bed and sit with me... Take care and chin up ;o)

[juliegee]

Hi Jared-

Churrg-Strauss is a type of vasculitis and the symptoms DO mimic those of a mast cell disease in the early stages. It's been suggested that I have a variant of this called Wegener's Granulomatosis. All you need to rule this out is a simple blood test. Ask one of your docs who knows what's going on. I suspect you do NOT have CS because you DO have mastocytosis and that certainly explains all of your symptoms. But if it will make you feel better, have the blood test done.

Yes, I do think you could still be under medicated. I'm on baby doses of everything & you are taking way less than me. I think a stronger H-1 at night, like a very low dose of atarax or doxepin will make all the difference in the world. I was miserable for over a year till I got on nightly atarx, 25mg. (It's equivalent to 2.5 10mg zyrtec.) And, Sarah's suggestion that you try a mast cell stabilizer is a great idea too. Why not E-mail Dr. Afrin and ask about both ideas.

I have been very very ill- even bedridden for long periods of time. With my med regimen, I am close to normal- just more fatigued than most. I KNOW you will get better. Hang in there & keep tweaking your meds until you have it figured out. Better days are ahead.

Julie

[caroline]

Rockiesgirl

how lovely! Thank you for the beautiful thoughts which touched me very much! Caroline