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Author Topic: pain, pain go away!  (Read 3127 times)
gothiclovemonkey
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« on: April 08, 2013, 08:53:54 AM »

I am so tired of hurting. whats up with that?
So now I might have pleurisy and pneumonia, yes i said MIGHT because they arent completely sure.
i spent the weekend in the hospital and have no valid answers and hurt like heck! i do believe i have surpassed the 10! When I went in the er the first time i thought it was a 10, until i woke up today.
im home now, btw. on antibiotics and a muscle relaxer.
i cant lay down, and sitting hurts now because my thigh has began to hurt too. like my whole entire left side of my torso and now my left thigh.
i still think theres a clot... i mean, it starts right after dialysis, it hurts to breathe, etc.
but the cat scan came back ok, except possible pneumonia in my lungs, i love how they are sure....  :banghead;
If i didnt have my boy to worry about I would end this crap now. hes my strength. i love him too much to give up but at the same time i worry that me being sick all the time isnt good for him either. i just wnat the best for him...
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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Sax-O-Trix
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« Reply #1 on: April 08, 2013, 03:54:27 PM »

I dare say your son is better off with you here.  I hope your pain resolves quickly!!!
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Preemptive transplant recipient, living donor (brother)- March 2011
jeannea
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« Reply #2 on: April 08, 2013, 07:17:43 PM »

I once told them my pain was a 14 on a 1-10 scale. Be persistent and make them help you. I hope they figure it out and you feel better soon.
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Angiepkd
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« Reply #3 on: April 08, 2013, 07:25:08 PM »

Hope you feel better! Pleurisy really stinks. The pain is awful.  I can tell you that when I had pneumonia/pleurisy, I felt better after a couple of days on the antibiotics. Hope that's the case for you. A sick mom is better than no mom any day. Kids are so accepting - I'm sure he is just happy to have you home. Hang in there!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
geoffcamp
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« Reply #4 on: April 08, 2013, 08:24:51 PM »

I feel you!!  Being in hemo in center A LONG time my body just is always in some state of pain or fatigue. I have practically given up on the doctors especially the pain management ones because they do not help me. I want to be active and get psychical therapy to stretch out and relieve this pain I have but they just keep shoving pills into me. When they wear off pain is worse. I never want to rely on pain medications alone. I think if I stretch right and regain some muscle it might help. But I certainly understand how you feel and there seems to be no clear path to take to get action. G.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
gothiclovemonkey
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« Reply #5 on: April 13, 2013, 05:24:40 AM »

Holy crap when it rains it pours!
After writing this, i ended up back in the hospital.
I went to the bathroom, and (sorry, may be tmi, but could help someone else!) my stool was extremely dark. I wouldnt say Black though... but apparently my instincts were good. I went to the er. Between the pain I was having, and that, i thought its better to be safe than sorry.
They imediately admitted me. The next morning I had a tube shoved down my throat, and they found 7, yes, SEVEN ulcers in there...
I had to have 2 bags of blood, due to the blood loss i had, my first transfusion, which btw scared me half to death.

In total, i was in the hospital for a whole week, except for coming home that sunday evening, and going back that tuesday morning.  I am still in a rather large amount of pain.

One thing that has me a little worried, because im still hurting so badly, and the dr said my ulcers were NOT bleeding...( wheres this blood loss coming from then??) i worry its something more...
I mean, i went into the hospital thurs- it was just pleurisy, then friday my dr sends me back into the hospital- pleurisy and pneumonia, sunday I get out, monday i am hurting worse than ever and i have bleeding somewhere inside... tuesday morning i need blood? Why didnt any of this get noticed on Thursday? Or at the very least the weekend in the hospital??
Does that sound fishy to anyone else?

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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
frankswife
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« Reply #6 on: April 13, 2013, 11:41:11 AM »

Oh, GLM, what you've been through! All I can offer are some  :grouphug; and  :pray; and a little bit of  :flower; to give you some cheer.
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"If we all abandon our posts, who then will stand?" St. Augustine
jeannea
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« Reply #7 on: April 13, 2013, 12:10:26 PM »

I don't know if fishy is the right word but it sounds like they don't have a good grasp on everything that is going on. Follow up with your docs and any new ones the recommend. You need treatment for ulcers as well as your pneumonia. I wish it were easier than this. YOU have to be your best advocate. It's really hard to do this when you're sick but you're strong. You can do it.

I hope you start feeling better soon. Sounds like a nightmare.  :grouphug;
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Angiepkd
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« Reply #8 on: April 13, 2013, 01:55:49 PM »

I agree with jeannea. If you don't feel right or have a suspicion that something is wrong, let the doctors know about it. Keep telling them until someone listens.  So sorry you have to go through this!  Hope you feel better soon and keep pushing for answers!  You can do it!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
dawn24
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« Reply #9 on: April 15, 2013, 05:31:22 AM »

Forgive me, I'm just a lurker but have you thought about auto-immune?  That can cause internal bleeding from the small blood vessels.  My father was mis-diagnosed with pneumonia when his lungs were actually filled with blood.  Perhaps ask for an ANCA test?
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gothiclovemonkey
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« Reply #10 on: April 16, 2013, 05:40:08 PM »

Welp, I just got home from a third stay in the hospital...
I had a fever, so i thought i better go back, and they admitted me....
Im not really sure how i feel about the events that followed.

The ER dr gave me a pain shot, because i was in pain. but then My drs came around, they refused me pain meds... Saying I cant take them at home, so i shouldnt have them here.... and she was actually kind of rude about it. Asked me why i came back. I said because I was scared. Sorry i am wasting everyones time? (thats how she made me feel) yet they kept me 3 days... no pain meds, but i had an iv of protonix for the ulcers.
Ok, anyone who really truly knows me knows i do not like taking pain meds, period, but i am in a ton of pain right now. I have these pleural effusions, pneumonia, 7 ulcers, plus the usual pain ive been having from something they have yet to actually diagnosis(they think RA but i have to see the specialist to be sure) its a tad overwhelming.
Heres a question, why is it that people who ARE drug seekers seem to have an easier time getting drugs from doctors, than it is for people who actually need them?!?! I know quite a few people who hospital hop for shots, and get prescribed large bottles of pain killers. WTF?
So today they come in telling me they will send me home, and insurance will cover my meds, so i leave, get a call from the hospital patient person, saying insurance wont cover, come back, they will give me my meds i need. uhhh why cant they all be on the same page?!? seriously frustrating.
Im in so much pain, i really do just want to give up, but i cant because I have a son that needs me.
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
jjneyjr
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« Reply #11 on: April 16, 2013, 05:48:56 PM »

Hang in there, moms are terribly important!
Cheers,
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JJ
AnnieB
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« Reply #12 on: April 16, 2013, 06:44:27 PM »

Wow, you are really going through a lot...I'm so sorry you're hurting  :cuddle; Hang in there...I'll be keeping you in my prayers that you start to feel better real soon.. :grouphug;
Anne

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jeannea
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« Reply #13 on: April 17, 2013, 08:37:53 PM »

I agree tha it's hard to get pain drugs. I think it's because our conditions are so complicated. The drug keepers keep it simple like unprovable back pain.

I'm sorry they don't have a solution for you yet. Maybe that doctor you should see about RA would give you pain meds. Hang in there. You can get through this even if you're screaming kill me now. Rest as much as you can.
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