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CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/3/2011 9:23 PM (GMT -6)   
Very short from me, will post more when I feel up to it. In severe pain and very dehydrated from all the vomiting with my gastroparesis flare. Also going into opiate WD because I haven't kept any meds down. about to head off to hospital for management, would much rather not, but at least it's not the ER - GP spoke to gastronomic this morning and he's admitting me.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/3/2011 9:33 PM (GMT -6)   
Take care Laura! We will be praying for you! I feel badly for you, and the rest of the members do as well.

See you when you get back.

SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/3/2011 9:36 PM (GMT -6)   
Oh my gosh Laura, I am so sorry to hear you are in such pain. My thoughts and prayers are with you during this
 
most difficult time. Know that you are in the right place with the doctors and nurses at your side. Let's hope they
 
can get your vomiting under control as well as dehydration, pain and withdrawl.
 
Hang in there girlie, it has to get better.
 
This too shall pass.
 
Hugs
Suzane

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/4/2011 9:40 AM (GMT -6)   
Laura, I am glad you are able to bypass the ER and get admitted directly. I hope that this hospital stay helps to get your gastroparesis under control and you begin to feel better. *gentle hugs*
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/4/2011 11:34 AM (GMT -6)   
Laura,

My prayers and thoughts are w/ you. The exact reason you've described accounts for about 70% of my hospital stays - vomiting, dehydration, not keeping my meds down and then leads to WD. I've been in there 30 days before things got back on track.

May this be a short visit and I sure hope you feel better. Many prayers.

--Tina

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/4/2011 4:28 PM (GMT -6)   
You are all wonderful people, you know that smilewinkgrin

Not sure how l I'll be here for- just tolerating small sips of water by mouth and nothing else, certainly no food...I tried a couple of small spoonfuls of porridge this morning as my anti-inflammatory med needs to be taken with food. It stayed down for all of a couple of minutes. Have had to leave all my regular pain meds by the wayside, and they are instead giving me regular morphine through a butterfly cath.

Fluids and IV soften are running strong. I didn't realize how dry i was... Been n dehydration rate fluids for well over 12 hours now, and I'm only just starting to think that I need to go to the loo..!

My GI is wonderful, but then I knew he would be. He came in and we spoke a bit last night and will go through plans when I have my scheduled appointment with him on Thurs. At the moment the main issue is getting my fluids improved and vomiting under control, cos that is the more dangerous thing. He's also going to talk to my PM today to see what is best to do there. If he can't control my pain here, I'll probably be transferred to another hospital under my PM's care...he can manage fluids and nausea a lot more easily than my GI can manage pain relief.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/4/2011 4:43 PM (GMT -6)   
Hello Laura!

I'm quite surprised to see you here, but very grateful you have checked in and updated us! You sound good, but I know that you are by no means out of the danger zone yet. You are one spunky girl, and what we on the farm would call a Whipper-Snapper! smilewinkgrin

I have thought of you several times today, wondering how you were doing. We all have been worried for you, and we miss you here on the forum already!

You take care, and please get better quickly…..we want you back! However, you know of course we want you to take all the time you need, as we want you a bit healthier you know! wink

Loves and hugs!

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 10/4/2011 5:19:11 PM (GMT-6)


CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/4/2011 6:30 PM (GMT -6)   
SE... I need distraction, I have my iPad to play with and the hospital offers free WiFi access to patients. Where would I be but here amongst friends who understand what I'm dealing with :)

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/4/2011 6:35 PM (GMT -6)   
LOL!….you are absolutely right Laura! Distract all you want! tongue You do have friends here!

Hope your sleeping at night!…are you? Visit all you want…we will be here to chat anytime.

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/4/2011 8:18 PM (GMT -6)   
Laura,

OMG! I am totally new to this site. I'm on the ostomy strand as a severe gut injury landed me with an ostomy which I will be lucky if it keeps working.

But as a separate issue, I at one time had RSD in my right hand and arm from carpal tunnel surgery. It was like electric volts going up my arm. LUCKY for me it was completely extinguished by 13 stellate ganglion nerve blocks and 86 sessions of PT.

BUT, now I am being diagnosed with possible Trigeminal Neuralgia (electric pain in part of face from sheath of part of trigeminal nerve rubbing on a blood vessel in my brain.) There is a drastic surgery for this and other lesser treatments and meds. BUT I dread going into another pain syndrome. TN is not a good thing.

I just went on this pain strand and saw your post. I really feel for you. ALL BODY electric pain???? How the h--- I'm like whatttt!!!

You have ALL my empathy, sympathy and everything else. God Bless you. Rosemary

I think CRPS is like RSD.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 10/4/2011 9:35 PM (GMT -6)   
Hi Laura. I'm sorry you were hurting so bad and so badly dehydrated. It's good to hear that you're just a bit better. I will be thinking about you and praying for you my friend. You're in the right place to be as sick as you are. I hope you're able to hold down a bit of food by now. You take care.


love and hugs
Loretta

ps. Gonna miss you, but take all the time you need to get well. I see you have your ipad with you. Good distraction.
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/5/2011 2:27 AM (GMT -6)   
Sure hope your pm doctor can give you better help soon.
Many well wishes and healing hugz...
thinking of you in hopes your improving some each day...
git yur self better....
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/5/2011 4:48 AM (GMT -6)   
I am sorry that you are back in the hospital.
I hope you are getting help soon and things improve quickly.

Sending good thoughts!

Take care,
Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw
Pelvic adhesive disease, IBS, SI pain, arthritis, kidney stones, depression, 10 pelvic surgeries for pain, ovarian cysts, adhesions, endometriosis, adenomyosis, and possible ovarian remnant syndrome. Unexpectedly growing ovary #3 on right side.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/6/2011 7:30 PM (GMT -6)   
Still here. Starting to keep water down, sometimes keeping tablets down. My doctor has started me on lorazepam, which is used as an anti-nausea med in chemo patients and dissolves under the tongue. It seems to be helping a little and if nothing else is helping me to sleep. I'm still not keeping any food down though...he has suggested we give it til Monday and it I'm still not managing food he will put in an N-J tube for a week ot two, just to bring my nutrtition back up a bit.

In good hands anyway. Glad tha tmy GI is overseeing, and the nurses are lovely. Such a small world that two of the young ones actually went to school with friends of mine... ;)

Laura

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/6/2011 9:00 PM (GMT -6)   
Laura, I'm glad that your GI is managing you in the hospital. Do you have things to keep you entertained when you are not asleep? The hospital can be so boring! I hope you don't need the N-J tube, but it's good to know they are keeping on top of your nutrition.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/8/2011 5:32 PM (GMT -6)   
Still here, still struggling. They took the IV out yesterday because it was getting quite irritated and decided to see how I coped without it. I'm able to drink a little, but I'm feeling very flat and tired today so guessing they will talk to my GI later about whether it needs to go back in again or not. I'm not keeping any food down at all, and it's still so painful to try to eat. He's in theatre on Tuesday morning and as far as I know has put me on his list - his reasoning being that it's easier to take me off it than get me on at the last minute. Really don't want the N-J tube- I've had em before and hated it so much, but if it helps me I don't have a whole lot of choice."
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/9/2011 1:48 AM (GMT -6)   
I want to go HOME cry I'm back on the IV... Was feeling so flat and sick this morning that I could hardly hold my head up. GI came in tonight, said the only way I'm not going to have an NJ tube put in when he runs his theatre list is if I'm not here. I don't want to be here. I don't want a tube again. Hate them with a passion. I don't handle feeds well...they're dairy based, I'm lactose intolerant, so he's got to get the dietitians to see if there actually IS a dairy free enteral feeing formula.

But I don't want it. So very immature, but right now I'd rather starve than have a tube put in again. My face is sensitised with the CRPS, and I know a tubes going to make that worse. I'd hoped to get out of hospital yesterday or today, now it's maybe Thursday. Everything hurts, I feel sick, I feel so miserable that everything makes me want to cry. Sorry for putting a dampener on the place guys.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/10/2011 8:35 AM (GMT -6)   
(((((Laura))))) I'm sorry you are facing having a tube put in. Even though it is medically necessary, I understand hating the idea of needing to have it in. I hope they can find a lactose-free enteral formulation so that the feeds do not cause you pain and side effects.

Keeping you in my thoughts and prayers, and wishing the rest of your hospital stay is as low-pain and misery as possible.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3694
   Posted 10/10/2011 9:10 AM (GMT -6)   
Laura

Have they suggested TPN , Total Parenteral Nutrition to you? I know it is a rather drastic step, and it does have its draw backs, but I also know it can be very effective, in restoring one nutritional level. It is litterally a specific nutritional forulated concoction that is give to patients through an IV. Anyway I do hope that you start getting better, don't be in such a hurry to go home, I know being in the hospital is no picnic, but if that is the only way that you can be treated, then Please try and stick it out. You will make it through this we are are all here to support you!

I wish you all the Best!

White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/11/2011 7:34 AM (GMT -6)   
Hi White Beard - I was tried on TPN a couple of years ago. Admittedly I was much sicker then, but I had a whole host of complications with it, and I wouldn't be in a hurry to touch it again.

At any rate, my doctor let me come home today, on the strict proviso that I call him or my GP 'AT ONCE' if I feel I'm getting worse, or by the end of the week if I'm not getting any better. I'm much happier at home - and have a much better chance of being able to eat at home anyway because I can prepare food that suits me... my staple when my stomach flares like this is porridge, and I think the kitchen were playing kindergarten because they seem to be able to make either 'Play Dough' or 'Clag'... nothing that resembles any edible porridge I've ever seen! The main thing is that I'm keeping fluids down now - so can at least have glucose drinks and keeping my meds down. Going to have to see if a compassionate supply scheme exists for Zofran (ondansetron) though. I need three wafers a day, and a box of 10 wafers cost me $85.00 today :( Not going to be on them for long at this rate. He's also put me on Lorazepam to help with the nausea, but I'm not liking it at all. I've never done well with benzodiazepines and this one is no exception :( Just hoping I can stay out of hospital now I'm home...wish me luck.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/11/2011 9:28 AM (GMT -6)   
Laura, so glad you are home! I hope you continue to do better.

I'm not sure if it's legal in Australia, but you might want to consider ordering the Zofran from Canada if you can't get it for less in Australia. I did a quick Google and see 90 4mg wafers for $115 at Northwest Pharmacy. You still need a prescription, but the prices are much lower.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/11/2011 10:39 AM (GMT -6)   
Hey sweetie, I dont even know what to say, I have never know anyone as strong as you are, you are seriously my hero.  Please keep on, I know that does not need to be said, you are one heck of a fighter.
 
Feel better soon,
 
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/11/2011 10:44 AM (GMT -6)   
Sure glad to hear your home, will hope you start to improve here soon...
many well wishes and Prayers being sent to you....
get better hun, so very concerned about you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 10/11/2011 4:44 PM (GMT -6)   
Hi Laura

It's good to hear you're home and that you're able to keep fluids and your meds down. Please be sure too keep in touch with your doctor if you're not better. I'm really concerned about you as well.

Take care. You're my hero as well.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 10/11/2011 8:36 PM (GMT -6)   
Laura ,I feel so bad for you ,but feel the hospital is the only answer at this point!I know Icouldnot wait to get home from the hospital!I can't help to notice that everyone here cares so much about you ,just look at all the posts for you and everyone hoping you get well soon.I am glad your home now and please get lots of rest and Ihope you feel better soon Take care
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