In hospital again

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 1/21/2012 5:04 AM (GMT -6)   
Hi everyone. I could desperately use some positive thoughts.

I had to go out yesterday and around lunch started feeling very sick with a splitting headache, light sensitivity and very sore neck. By the time I got home I had a 40C fever and the beginnings of a rash on my thigh.

I saw my GP yesterday evening and he sent me straight to emergency. They are not 100% sure as the rash is not typical presentation, but the doctors suspect I have meningitis. The infectious diseases doc looking after me is reluctant to do an LP because of all my 'hardware' from the pump and SCS. My heart rate and BP were very unstable last night and they couldn't get and maintain IV access, so they have just put in a central line and are hitting me very hard with keflex and vancomycin - which the infection is responding to regardless of what it is.

I'm likely to be here for a few more days at least, even if things go well. But what I can say is my ER experience was as 'good' as it could have been - kind, compassionate doctors and nurses, now I'm up in a room on the ward they are good as well.

I'll try to keep you updated but healing thoughts would be appreciated.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/21/2012 5:23 AM (GMT -6)   
Laura, wow girl - healing thoughts your way for sure! Lp no fun but certainly better to know! Seems like they should be able to get @ hardware (what am I saying?.. they fractured my vertebra L3 during last epidural for childbirth - u could hear it crunch when I had a contraction ..but of course no responsibility taken -I shouldve sued!)
Anyhow..are u experiencing RED MAN SYNDROME (extreme hottness & itching fro Vanco? I hope not. You poor thing! I'm so sorry @all this but hey - good, compassionate Drs & staff..u cant beat that!
Sending healing happy loving thoughts to u!
Angelina
age 41
dx: MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod (4BTP), fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vitamin D, B stress complex, PRILOSEC, Transderm-Scop (on hold)

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/21/2012 6:20 AM (GMT -6)   
Morning Laura!

Oh Dear!….not good or fun!….We all sure do hope, and wish you the best there. You seem so darn far away over there….and I wish we could do something for you. I did post a note on the FB page for you…and you know that group will go nutz worrying about you!

Please hurry back and hop back on this team!…seriously though…you get plenty of rest…and eat your porridge. (I guess I misspelled that right?) tongue

Keep in touch as well…I miss you already! wink

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 1/21/2012 8:22 AM (GMT -6)   
Laura,
I am praying for a complete and speedy recovery for you. Central line vancomycin can cause itching and that creepy crawly skin feeling. I remember that well.

Its good that you have compassionate and caring medical staff. That can make a huge difference in how your body handles illness.

I am praying that you begin feeling better soon. Missing you here on the site. Wish I could help.

Sending you healing hugs and prayers,
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 dysfunction, arthritis, fibromyalgia, depression and anxiety, 11 pelvic surgeries for pain, adhesions, endometriosis, adenomyosis, ovarian cysts, and ovarian remnant syndrome.

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 1/21/2012 8:39 AM (GMT -6)   
Laura

So sorry to hear of your woes but glad you got decent medical attention

Sending you healing thoughts and prayers
Maggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder, ptsd, fibromyalgia, chronic pain, l3/4, L4/5 gone, bursitis arthritis sciatica

seroquel, hydrocodone clonazepam norvasc multi vitamin and magnesium

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 1/21/2012 9:56 AM (GMT -6)   
Many many Prayers and well wishes being sent to you...
Hope you have a speedy recovery and that your feeling better
very soon...keep us posted when you can, Thinking of you...
Hope you don't mind some healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 1/21/2012 11:40 AM (GMT -6)   
Laura...

I'm so sorry to hear this :( Please keep us all updated.... as a side note, I've had meningitis 2x - it was horrible - and I didn't have the "typical" rash either.

Rest... eat the best you can.... and know you can come here and vent :) I hope you get out of there as quickly as possible.

Thinking of you... --Tina

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 1/21/2012 11:57 AM (GMT -6)   
Hi Laura,


I'm so sorry to hear about your medical issues. It is wonderful that you are getting good care though....and quite a surprise. I can't even imagine how stressing this must be for you to have had such a sudden health change. CP is certainly no fun, but Memingitis is so frightening. I'm happy that it is responding to the meds they are giving you.

It makes me wonder if it is bacterial (since it is responding) and if it is contageous. I am not medically trained, so I don't know, but you got something from somewhere and I am concerned for your friends and family too.

Please take care and heal quickly. We will be praying for you!
TLIF L5-S1/failed, Pituatary disorder w/HGH deficiency, Fibro, Failed Bladder Surgery & Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (surgery related trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendionitis, Adult Onset Flat Feet, Vision Issues & much more.....

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 1/21/2012 2:07 PM (GMT -6)   
Laura

So sorry that you are back in a hospital, but when you are sick that is the best place for you.

I send healing prayers your way and soft hugs((((((((Laura)))))))

Listen to the doctors and keep in touch with us.

Healing thoughts
Betsey
Age to a woman is like krypronite to Superman.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16764
   Posted 1/21/2012 2:34 PM (GMT -6)   
Hi Laura, I am so sorry to hear you are doing so poorly and are so sick. Hopefully, the drs can get you back on track and feeling better soon. Please keep us posted on how you are doing, we sure worry about you when you end up in the hospital. Hugs, Susie
Moderator Chronic Pain Forum

sos007
Veteran Member


Date Joined Nov 2011
Total Posts : 615
   Posted 1/21/2012 3:44 PM (GMT -6)   
Dear Laura.....sending positive thoughts and prayers your way....Bless you and I am so happy you are getting good care and good medical staff that makes things alot easier. Hope you are able to go home soon....Take care

Blessings, Amy
Chronic Pain(nerve), fibro, mild depression and a few others

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 1/21/2012 4:15 PM (GMT -6)   
Laura- I'm new here, but wanted to say that I hope you get better and feel better soon. I really hope you don't have meningitis- please keep us updated. Sending many positive thoughts your way and gentle hugs!

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/21/2012 6:15 PM (GMT -6)   
Hi and thanks to all of you.

I'm feeling a lot better this morning, though my head and neck are still sore.

Angelina... Yes, I'm doing the Red Man beautifully :-( I've had the vancomycin twice now, and a big reaction both times. I'm due it now but they can't find my doctor, so they're holding off giving it to me euntl they can talk to him. I scratched myself stupid last night...didn't mean to, but couldn't help myself...just SO hot and itchy with it.

As for the LP... My PM doctor had trouble doing them a few years ago with just one SCS lead to work around. I've now got two leads and a pump catheter and they felt it was too close for comfort... esp as accidentally putting a needle through the catheter would mean urgent surgery to replace it :-o
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/21/2012 6:26 PM (GMT -6)   
…well that sounds a bit better Laura!…hope it continues for you! wink

SE
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/21/2012 6:31 PM (GMT -6)   
Hugggsss Laura. I do hope you feel better soon hon. Tell them you want blood work with ANA, CBC and Chem 20. When they ask why say you want to look for auto immune disease. Also ask for benedryl. Itching, rash with hotness is hives, there of you could also be expereincing a severe allergic reaction. Or menegidits (sp, cuz Im just waking up). Do you remember what you ate? For allergy tests on foods and drinks, perhaps ask for an allergy test as well.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Ssinss
Regular Member


Date Joined Jan 2012
Total Posts : 66
   Posted 1/21/2012 11:27 PM (GMT -6)   
Will keep up the good thoughts and prayers for a comfortable stay, recovery.
As will my family.
Theresa :)
Abdominal surgeries 7ish (C section x2, Hysterectomy, Laprotomy due to scar tissue, left Colectomy, ventral hernia repair,MRSA, Ventral hernia repair removal, MRSA. Ventral hernia repair laproscopic, last surgery left a hole for months that needed to be packed. The last hernia repair was a placement of a Large abdominal mesh with unusual sensitivity to the tacks.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/22/2012 12:08 AM (GMT -6)   
Thanks all :) Smurfy, the itching was a reaction to one of the antibiotics, which they have now stopped giving me. I have actually just had a whole host of blood tests a couple of weeks ago including ANA, CRP, ESR and so on, which I know are all normal... They are currently waiting on blood culture results but apparently they can still be negative in 20% of bacterial meningitis cases. They are fairly certain, but not 100% sure, that it IS meningitis... they are treating it as such to be on the safe side and certainly whatever is going on is responding well to the treatment :-)

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

sos007
Veteran Member


Date Joined Nov 2011
Total Posts : 615
   Posted 1/22/2012 2:36 AM (GMT -6)   
Laura....I am glad that you are recieving good care, and that they are treating you and you are responding well. Keep us updated, I will keep you in my thoughts and prayers.....Gentle Hugs

Blessings, Amy
Chronic Pain(nerve), fibro, mild depression and a few others

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 1/22/2012 3:06 AM (GMT -6)   
Hi Laura...

I'm glad you are feeling a little better.... I've been thinking of you. Please keep us posted on how you are doing - because we all care!

Hugs....! --Tina

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16764
   Posted 1/22/2012 12:31 PM (GMT -6)   
Laura, I hope they were able to get a hold of your dr and switch you over to something different. Vanc is a very strong antibiotic and one of the few I am not allergic to. I usually end up on that when battling cellulitis infections in my legs, it knocks that really well. The down side is the blood draws every other day to measure how much Vanc is int eh blood. Apparently we can get too much and that can be bad according to one of my nurses. Never did understand that too well, lol.

Hope you are feeling better.
Moderator Chronic Pain Forum

sos007
Veteran Member


Date Joined Nov 2011
Total Posts : 615
   Posted 1/23/2012 12:31 AM (GMT -6)   
Laura....just letting you know you are in my thoughts and prayers...Update us as soon as you are able.


Blessings, Amy
Chronic Pain(nerve), fibro, mild depression and a few others

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/23/2012 1:04 AM (GMT -6)   
Thanks Stray - my nurse told me much the same thing. They ended up taking me off it altogether as I was also on another antibiotic at the same time... Ceftriaxone, which I believe is a first line meningitis treatment ... and because the infection is doing well the doctor is happy just continuing with the one med. All my inflammatory cells are going back down like they should and my temperature is mostly staying down, though I was feeling very sick and wiped out today. Vomiting quite badly earlier, but then my pain is up and my potassium levels have dropped lower than they should be too which always makes me feel a bit weak and tired.

Plan as of now is home Thursday or Friday... And hoping they don't have to replace the CVC.... Dr wants to take it out and put in a PICC, I don't want a PICC because that's how I had major CRPS spread to my right arm...
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16764
   Posted 1/23/2012 6:25 AM (GMT -6)   
Ok, help me here what is a CVC? I have a port a cath in my chest, I have terrible veins. I don't blame you for not wanting a PICC either. I did Remicade infusions every 4 weeks for 3 1/2 years for crohns disease and what veins I had were shot after the 2nd infusion. I love having the port. Now that I battle cellulitis infections in my legs from time to time it makes it so much easier doing IV antibiotics.

I hope you continue to improve. Hugs, Susie
Moderator Chronic Pain Forum

Post Edited (straydog) : 1/23/2012 10:13:49 AM (GMT-7)


bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 1/23/2012 10:35 AM (GMT -6)   
Oh no, not the PICC...hope the other works out for you Laura

In my prayers
Maggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder, ptsd, fibromyalgia, chronic pain, l3/4, L4/5 gone, bursitis arthritis sciatica

seroquel, hydrocodone clonazepam norvasc multi vitamin and magnesium

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 1/23/2012 12:03 PM (GMT -6)   
CVC = central vein catheter.... I think it's the same as a port....

I HATE PICC lines. Uggghhhh. Laura, I hope you continue to feel better. I hate to hear that you are so sick. :(

Love, Tina
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