Pain- sigh

[BethannUK]

I need to whine, briefly- Im so sorry. I have been trying so hard to stay upbeat and be helpful, but I just am at wits end-

I am so sick of pain meds that dont work, of this ****** pleuritic pain- not being able to sleep, not being able to snuggle up to my husband in our own bed, and to top it off I got burned by the hot water bottle tonight - the only thing that made any rest at all possible- and have all little blisters on my back... so it hurts on the outside and on the inside. My shoulder, chest, and back are all flared up and it feels like an elephant is using me as a sofa. My arm hurts to move and lift it. Its not a new pain, just the same old pain that creeps back up as soon as I dare think its getting any better.

I am using a fentanyl patch (75mcg), oramorph, pethidine, nothing works. I feel like a druggie gobbling smarties but they dont help. I would love to wimp out and just go to AE, beg for pain meds and hide for a while... the ache and frustration just have really gotten to me today and I just want to scream. I had a pulse Wednesday, my last one, and it felt so good for a day... and now... argh.

My knees and hips are better after the pulse, and I am so grateful for that, but all I want to do is breathe and sleep in my own bed. I just want to be able to pretend for a little while that everything is not like this.

Im sorry... I am just so down.... I would cry but it hurts to cry, I am sleepy and yawning and that hurts, and now because I foolishly got this burn I can't even lie back comfortably at all. What an idiot I am- I feel like as a nurse I should know better what to do for myself, and thats upsetting me too that I seem to not even remember the basics of how to help this...

sorry to complain and go on... I knew you would listen, and I dont wont to keep going on like this, so maybe I will just hush up for a few days until it blows over. Thanks for being such a lifeline for me... I cant tell you all how much this place means to me.

[andi04]

((((((((Bethann)))))))

you sound like me today i'm an anxiety filled scared person who knows nothing, and i'm sure i'm not making sense and all i want to do is whine but my family is at there wits end right now so basically all i have is this board...

I hope you are feeling better you are sounding exactly like how i feel right now minus the burn? did i read that right or are my meds making me hallucinate again...I've been doing that alot lately.

anyway...I hope you feel better and please whine away we can whine together on this thread if you feel like it...i should be in bed I think i had four hours of sleep this week and its friday already feels like monday still...okay see i'm rambling all about me again i must stop doing that lol....

anyway *hugs* feel better hun....

lots of style_emoticons/<#EMO_DIR#>/clover.gif and I hope your pain goes away quickly i will pray for you tonight and light a candle...

[hurley]

Hi Bethann

I'm sorry you are feeling down and blue style_emoticons/<#EMO_DIR#>/hugbetter.gif

Pain is really a horrible thing to have to deal with. I can relate to what you are saying. I do know that if my pain meds are going to help it only takes two. If this doesn't get the pain, then nothing will. Some days they work and some days they don't. Sometimes they "sorta" work.

I have a question about the blisters on your back. Do they pop and turn into scabs? I have had this before but have had the worst breakout over the past month - worse than ever. I can get them anywhere but now mostly on my back, creeping up my neck and on my face, as well. Wondering if this is what you get. I can't decide if they are more itchy than painful or the other way around.

You have to be careful with your hot water bottles. And don't feel guilty for sharing you pain. That is what we're here for. When we share with others on the board we are all able to help each other validate our feelings, something most doctors are incapable of doing.

Cheap heating pads aren't much better. Low on mine is style_emoticons/<#EMO_DIR#>/hairstand.gif (same as VERY HOT style_emoticons/<#EMO_DIR#>/ermm.gif ).

Get some rest. <Read those three words one more time.

Hugs.


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Julie

[Joandublin]

Oh Bethann style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif
What a terrible time you are having lately. You have every reason to 'whine'. The frustration of these darn diseases creeps up on you just when you think you are coping really well....I know.
This site is about the only place I know where I could go and have a good moan and a weep and no one would judge me for it. Sometimes we all need that kind of space.
It sounds like you are having a really bad day Bethann and you deserve to feel sorry for yourself.
Take it easy Hon. Dont be giving yourself a hard time.
Tomorrow is another day and it can look after itself.....
But for now, you just do what your body and mind tells you is right.
Much luv across the Irish sea

style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif
Joan

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Bethann, I am a nurse also, there are several nurses on this
site. You are deffinately not stupid. We got trained in nursing, not in
speciatelities. Besides, we make the worst patients, don't we? Please,
do come and vent here anytime. I have just made it through my first big "flare" it began
the end of november,and ended in Mid January. I spent all that time , mostly
in bed, always in pain, and almostly always crying. I kept thinking' is this ever
going to end? Well it did. So hang on to that part, at least. Better days ahead.



Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[lisade]

Bethan I am sorry you are still in pain. I know in chat you were hurting very badly and I hope you called the doc.

I am a nurse also and sometimes this disease just baffles me.

You have come to the right place vent away, we are more than glad to listen.

style_emoticons/<#EMO_DIR#>/foryou.gif

[BethannUK]

Just an update- they doubled my MST, gave me 75mcg fentanyl, but no relief. Added diazepam. I was still rooted to the chair unable to move- breathing seemed like a marginally agressive activity.

2am I called the GP out of hours service, mainly to get clearance to go to Casualty. I was so low- so desperate- but he said no to the ambulance and came to the house within 20 mins, gave me 3 jabs of morphine, gave me diclofenac IM, stayed over an hour until he was sure I was comfortable, gave me scrips to further increase the MST, and will report back to my GP with some recommendations about getting the pain under control. He was loving, comforting, and even put his hand on my face in a comforting and uplifting way. There I was laying feeling like i just wanted to die and this loving doc said "I wont leave until you feel better, I promise, I wont let it stay this way no matter what it takes." He smiled, was patient, spoke to me like a real person, and unlike most docs he even gave a decent jab! He said he would call back at 6am to check in, and not to worry if I didnt get to the phone.

6am, just now, before he ended his shift he called the house to see if he needed to come back, was I in any pain... I told him I was ok, he said he left a message for the other docs who would cover this weekend, and rather than have me to go Cas, he has asked them to do as he has done. He left his own mobile with the message service so if there is a problem with getting another doc he will come in even tho he is not on shift. This isnt even my own GP- this is one a a group of docs whose business it is to cover the out of hours needs of patients in this area. I am so very very impressed and feel so much less desperate now. Even if the relief is just today, at least its something.

And believe it or not, he knew what Adult Onset Still's was- he stopped to look it up before he came out to see me, and he came to see me right away!

A positive part of being ill is the grace of having such wonderful people come into your life- you who listen to me whine and love me anway are some very very special people ((hugs)) and this doc another.

(((hugs))) thank you all so much for not letting me feel so alone in all this.

I know the pain will likely return as these are short term measures- but it lifts my heart when people are like this, especially when they dont need to be, when no one is watching, and when there is no award in the wings. How was he so compassionate when I woke him up at 2am???

[hurley]

Bethann

I am so impressed with your doctor. A housecall. I thought that was a thing of the past. I'm glad he was able to help you with your pain. You are really hooked up, girl!! style_emoticons/<#EMO_DIR#>/biggrin.gif

Do you have anything to deal with the pain once the morphine runs its course?

Take care and keep us posted.

Hugs.

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Julie

[alobreto]

Oh, my, Bethann! style_emoticons/<#EMO_DIR#>/jump.gif
That doctor is a total LOVE! style_emoticons/<#EMO_DIR#>/wub.gif

I am old enough to recall when many docs DID make housecalls, but I haven't even HEARD of that for a couple of decades at least!

It sounds like you are in very good hands!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[Joandublin]

Bethann
Really really glad that this angel of a human being came into your life and gave you some comfort and peace when you needed it most.
Any chance he could become a semi permanent fixture in your disease management???
Glad you are a bit more comfortable.
Take care girl
Thinking of you
Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/flowers.gif

[HeatherR]

I'm new here, but I felt so bad for you that I had to respond. I think you had a miracle in that doctor, and I'm really glad he helped you. I'm so sorry you're having that kind of pain. I just started having "pleuritic pain" and it's horrible. I guess I didn't realize that it will stay or come back. Bless you and I'm sending newbie ((((((hugs)))))). Gentle gentle ones!
HeatherR