Apparently, we are "Gray" and "Muddy"

[NikkiNicole]

I dislike our disease more and more every day. I know, there is no one out there that actually LIKES it. But, it continues to be the bane of my existence.
Sunday, I started coughing this dry, barky, seal cough. It got worse and worse and I felt worse and worse so I ducked out of work an hour early and went home to bed. Fast forward to midnight when I woke up gasping for air, feeling like my entire ribcage was shrinking around my lungs and crushing my heart. Dan took me to the ER, I was hooked up to monitors and an IV. I peed in a cup, let them take blood, etc. Nothing showed. So the ER doc said I probably had a chest wall spasm or bronchial spasm and sent me on my merry way.
On Monday, I was severely dizzy and nauseous and I figured it was from the morphine. So, I stayed home from work. Tuesday? It was more of the same. I felt like I was run over by a bus. It felt like my lungs were full of cement but I wasn't coughing anymore.
My stomach started to hurt, but nothing was happening.
Thursday, I carted myself off to the doctor. My chest felt tight still, and now it felt like I was being stabbed in the appendix. Except ... I don't have an appendix! I had a camera shoved in my girl parts to see if there was a cyst on my ovaries. Nope. I went to my general doctor and she poked at my stomach which was tender in every single place she touched.
I explained that I hadn't had a bowel movement since Sunday because the pain was too much to push anything out. (I know, sorry, TMI) She explained I was probably constipated from the morphine.
Her words after that astounded me and frustrated me to no end.
Since I have Wegener's, it makes diagnosing anything 'muddy' or 'gray' because it is hard to tell what is something new or what is something Wegener's related. I was referred to my rheumatologist.
Fantastic. I won't get to see her til next week sometime.
I came back to work today, which I regret because I feel weak and lightheaded and like there is a band wrapped tightly around my chest. My inhaler is at home. Drats. I might run home and grab it on my lunch break.
Has anyone else ever had any of these issues?
Could I just be constipated from the morphine? Normally I do very well with IV pain meds. I've never had constipation problems with any of my surgeries or IV meds. I've often had GI issues with either too loose stool etc and it was always contributed to my lack of a gall bladder. Could it be Weg's related all this time?
What about the chest/bronchial spasm? Has anyone ever had those?
I emailed my rheumatologist with the list of ongoing problems and the added problems that I am having now.
I needed to come back to work but now ... I need to go back home.

[Pete]

Unfortunately, constipation is a side effect of opiates. Have you tried a laxative or stool softener to get things moving again? Also, keep hydrated.

Our disease ought to put us on a first-name basis with our docs...

Hope you feel better soon.

[NikkiNicole]

I am taking Miralax right now at the direction of the doctor I saw. I just got an email from Dr. Belek in San Rafael and I am to start back on the Methotrexate injections and a lower dose of prednisone than I have done in the past. It's set for a 3 week taper right now and will hopefully calm the symptoms down. I don't want to gain anymore weight so I am also starting back on my very strict healthy/clean eating regimen. I have to.
It will benefit me.
I am still sad because I know that with the injections comes 3 days of extreme fatigue. But, at least I know this and can do what I can to combat it. I'll be sure to at least get the walks in every day.
The regular/family medicine doctor was not my regular doctor. She wasn't available. I know if I had seen her she would have been more on top of things because my regular doctor is the one who ordered the ANCA testing and who mentioned Wegener's WAY back in the day. At least the doc I saw knew what Wegener's even was. Sometimes they stare at me like I have a horn.
Welcome back, Methotrexate, I didn't miss you but I am hoping that your presence in my life brings back the feeling good again.

[Debbie C]

Gray and muddy...well that's a new one ! The morphine will definately make you constapated.But you were given that after all your other syptoms, A good thing for that is to drink ginger tea,that helps with digestion or this tea called smooth move, great name but it works. Have it a night and you are good to go (literally ) the next morning. Did they do a x-ray or a scan of your chest.Hope you feel better soon

[Jayne 14]

I've never had chest / bronchial spasm but definitely had horrific pain from constipation
It's even woken me up from sleep it's that bad , so maybe it's that ??
Gray & muddy ???
It's a phrase I've not heard before - but heh sometimes it feels like that .
Hope you feel better soon xx


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[mrtmeo]

My mom was recently constipated for 5 days and I used everything that has always worked before plus she has been on colace since June and no go.
Finally, I gave warm water enema's and suppositories and she started passing the hard balls.
The next day, gave her a tbsp of extra virgin olive oil and the colace and she started going regularly until all the plugs were gone.
I have no idea what really caused it, but just before she had a stomach flu with vomiting and diarrhea.

Someone else mentioned that using both a laxative and stool softener at once did the trick for them.

I see GI attacks on my mom which has to be the vasculitis and it is pretty difficult, from what I have read, to find some intestinal bleeds or inflammation. My mom never had ascites (abdomen swelling) until she was treated with rtx and ctx and it is still there, but she is still anca positive.

I hope the mtx helps settle things down.

Can I ask why they gave u an opiate when u were having breathing problems?
Opiates depress the respiratory system and they can cause constipation, but they didn't for my mom.

Also, you mentioned feeling a band around your chest.
Do u get acid reflux?

[Jaha]

Nikki,
I would consider having your doc check you for stomach issues, acid reflux and maybe intestinal issues.
The medications that we have had to take for wegs really plays havoc on our digestive systems. All the best to you for getting this taken care of.

[annekat]

I may have had some of those chest wall spasms but not as bad as yours, as they go away before long. But they do hurt! Mine are more in my lower chest area, below the breasts, and happen suddenly; it sort of feels like something gets folded over from me bending over, and gets stuck in that position. Probably not the same thing, but weird, anyway. Don't have a clue, really.

[NikkiNicole]

That is how it feels!!!! You described my symptoms exactly. It's horrible. I can't breathe. It feels like someone tightened a band around my middle. UGH!

[annekat]

That is how it feels!!!! You described my symptoms exactly. It's horrible. I can't breathe. It feels like someone tightened a band around my middle. UGH! Hmm, that's weird, because yours sounds so much worse in that it lasts, where mine goes away if I relax and stop thinking about it. I always felt it was some sort of a cramp, or maybe as you say, a spasm, caused by the weight of my breasts pinching some tissue together or something. It is very uncomfortable. I will have to pay attention the next time it happens, see how long it lasts, what I'm doing at the time, etc. I hope it gets figured out on your end since it is causing you so much misery. I wonder if they are the same thing.

[amy.r.kahl]

Before they diagnosed me I was in so much pain in my lungs I could barely move it felt like crawls digging into my heart and some putting bricks on top and on the sides and squeezing they found lung nodules I had an 02 tank my O2 levels were sometimes fine it just hurt to even breathe so the oxygen helped after being on the rituxan I only need it prn which is very seldom normally only if my sinuses are so swollen I can breathe I feel I'm gasping for air. So yes I've had those same pains it's horrible and before I was diagnosed by mayo my doc thought I huffed paint needless to say he got fired I've never even tried a cig. So maybe a ct??


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