Thoughts, prayers, etc.

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 5/23/2011 4:50 AM (GMT -6)   
I could really use some of the above right now :(

On Saturday evening, my legs were a bit more swollen and discoloured than normal. I'm always a bit concerned when that happens, because the poor circulation and oedema makes me a high risk for cellulitis.

Sure enough, by yesterday morning both my legs were looking well and truly infected. By last night, all my skin was starting to ulcerate and break down. Saw GP tonight and I'm on some heavy duty antibiotics. I'm seeing my PM doctor tomorrow morning but I'm going to be struggling to hold out that long. Nothing can touch my legs - I've got my pants rolled up to my thighs and I spent last night in my wheelchair rather than bed, because even the mattress touching my legs hurts. Just hoping that he can/will do something. I called his emergency number yesterday and he finally called me back this morning. He was pretty grumpy and short with me - not sure if he'd had a bad night himself or what, but it was very upsetting for me cry
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/23/2011 7:36 AM (GMT -6)   
Many Prayers and well wishes in hopes your doing better soon....Good luck with
the appointment and make sure your pm doctor see what's happening...
((((((((((((((((((((((((((((((((((((((((((((((CRPSpatient)))))))))))))))))))))))))))))))))))))))
healing hugz and keep us posted will be thinking of you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 5/23/2011 8:34 AM (GMT -6)   
 
 
          Hello CRPS!
 
               WOW!...sounds like you're having a rough time of it there!
 
       So sorry to hear of this latest setback, with you're legs. shakehead
 
             Of course prayers are in order for you, and we hope you get some relief very soon.
 
       Please do keep us updated on your condition, and We hope that PM of your's come through quickly.
 
    It's a shame when they pull these kind of stunts and or attitudes, at such a critical time as this. shakehead
 
      Take care,
 
        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"

Post Edited (Screaming Eagle) : 5/23/2011 9:33:54 AM (GMT-6)


Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 5/23/2011 8:56 AM (GMT -6)   
I'm sorry to hear you are struggling so much!  Just from my own experiences, it really sounds like you need to possibly be on IV antibiotics... did  he mention this?  Actually, if you are struggling that much - I would insist on it. 
 
Let us know how you are doing today....  Many thoughts and prayers --Tina
 
 

Lindaloo
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Date Joined Sep 2006
Total Posts : 1713
   Posted 5/23/2011 9:28 AM (GMT -6)   
CRPS-
 
My sincerest prayers are with you.  I have already said a prayer and will continue to do so.  So please, keep us updated on your progress, because we really want to know.
 
As for your doctor's grumpiness, if it were me, I would, head on, tell him that his grumpiness made you feel uncomfortable.  Put the ball in his court and have him explain himself.  By saying that it made you feel uncomfortable, or words to that effect, you are not exactly criticizing him, but alerting him to how it made you feel.  He really needs to know, I do believe.  But you determine what is best for you.
 
Cellulitis is no fun,  I was a home health nurse for many years and treated patients with that condition to the legs and it is debilitating and depressing to the patient.  Try to have contact with family or close friends if you can.  Try not to isolate, if possible.
 
At any rate, I am rooting for you, my friend, and hope all goes well.  Please let me know what's happening.
 
God bless and keep you.
 
Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/23/2011 9:53 AM (GMT -6)   
Thanks everyone *hugs*

Tina and Linda - it sure is horrible. This is about the 6th time I've had it. I'm seriously considering asking my PM about hospital admission, for both the cellulitis and pain management, as this is what I'm dealing with already.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/23/2011 11:46 AM (GMT -6)   
CRPS,
That picture is horrible........I can see where the skin breakdown is happening already. I hope that by now you have spoken to your PM doctor and he has agreed to put you in the hospital to deal with the infection and with the pain levels. My husband had cellulitis twice and his doctor threatened to put him in the hospital if it didn't clear up by the 2nd day- not go away completely but start to show signs of receding some.
Anyway sending good thoughts for you,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/23/2011 2:07 PM (GMT -6)   
Laura....
 
Baby in lap; sorry for typos.... anyway, I can tell you are just miserable :(  I would definitely go in for treatment... for the infection and pain control.  I've spent many many days hospitalized for sim0ilar things; I hate the hospital - but at least you're not as miserable as at home w/out proper meds.
 
Oh, that swelling hurts; I feel for you.  Re: your heart meds - florinef causes me to get that exact way; I'm now on midodrine.  It works much better for me.  I hope your cardiologist will help you w/ that.  Even though I have hypertension, I also have postural orthostatic issues - so it takes two different heart meds to "sandwich" me in the right place.
 
Anyway, Laura, many prayers coming your way.  Honestly, I really hope you can go in for some relief....
 
Keep us updated.  --Tina

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/23/2011 10:13 PM (GMT -6)   
Oh Laura That picture really looks painful. I sure hope you're getting some relief by now. Bless your heart. I would have insisted on being hospitalized. I've never had celulitis before, and I can tell that it is not good. My thoughts and prayers are with you. Please keep us updated on your condition when you're able to. You take care.

love and soft 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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 5/24/2011 12:15 AM (GMT -6)   
So sorry for all your suffering. I can feel your despair.

I would definitely get an admission for IV antibiotics and special \

wound care by a nurse in this field. This is nothing to fool around

As a nurse I have seen some wounds turn pretty septic.

Also you could get some better pain management and having

the cellulitis watched closely as well as your wound.

Good luck and keep us up to date,

My prayers are with you. I hope you get to feeling better

very soon.

hugs
suzane

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/24/2011 5:08 AM (GMT -6)   
Thanks to everyone.

I'm in hospital now, on IV fluids and antibiotics. My arm is hurting like crazy too now. They decided that they weren't even going to try for a vein; went straight to a PICC line and even had trouble getting that in :-( Feeling shocking...

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/24/2011 6:54 AM (GMT -6)   
Laura....
 
I'm so sorry you are going through this...but glad that you are getting the care you need.  I've had many PICC lines (and difficulty getting those in, too...makes me hurt for you).  As you know, though - at least, once it's in - it's in and you won't have to deal w/ an IV blowing and such. 
 
I pray that you heal quickly.  Are you getting something for pain?  I hope so.  Thinking of you, and praying for you. --Tina

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/24/2011 8:03 AM (GMT -6)   
I hope your feeling better soon...keep us posted...
Try to get some rest, and I'll be saying prayers for you...
(((((((((((((((((((((((((((((((Laura)))))))))))))))))))))))))))))))))))
well wishes, prayers and 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"...
********>^..^<********>^..^<*******

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 5/24/2011 8:20 PM (GMT -6)   
Oh my Goodness! I had no idea how sick you were and just got time to read some of the posts. I hope you are feeling better! I know the meds will kick in soon and help you with this. I'm hoping and praying you get good medical care where you are.

I 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, Pre-glaucomic, 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 & much more.....

Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 5/25/2011 12:58 AM (GMT -6)   
I too am so very sorry for your suffering. I can't even imagine how miserable you must be. We have a Healing Well moderator who has this happen once in a while and they described it to me in a very similar way....absolutely miserable.

Hold on to us <extending hand> and we'll get you through until the doctor can work some magic. But it's nothing compared to the magic of the caring and love pouring out to yoou from this forum.

God Bless,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Use the talents you possess, for the woods would be very silent if no birds sang except the best.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/25/2011 4:10 AM (GMT -6)   
Chutz - the magic of this forum is indeed a wonderful thing *hugs* to all of you.

The antibiotics are kicking in well by now. My legs look a hundred times better. In a way not looking forward to the time when those sores start healing...I'm not real good at dealing with the itchies... The real downside is that in getting in the PICC, the doctor hit the nerves in my arm and has flared up my CRPS really badly.

Probably be in a few more days. I suspect that my doctor will keep me in hospital as long as he can. My parents flew off to New Zealand this afternoon - it's a trip that they've had planned for months and months, and Mum was all for cancelling, but he told her yesterday that she'd be silly to cancel and that I'd be well looked after. They are good here, that's for sure. I have a nice room to myself, and the nurses are good.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16301
   Posted 5/25/2011 7:29 AM (GMT -6)   
Hi Laura, I am very glad to hear they went ahead and admitted you to the hospital. With legs in the condition yours are in that is the best way to get the care needed to get over the hump. I have been battling cellulitis in my legs for several years now and it is no fun, so I understand what is happening with those legs. I don't know if this is your first dance with it or not, but it appears once you get cellulitis, you are prone to having repeat infections. My PM dr really keeps an eye on my legs because of the metal implanted in me and she worries I will get an infection around my pump. I have spent many a days with my legs and feet packed in ice bags with no towels over the skin, just trying to get the fever down in my legs. If you have a fever in your legs now, they will peel like a sunburn, lol.I peel year round.

I have a Port A Cath in my chest and it makes getting the antibiotics a lot easier. I have terrible veins what is left of them after three and a half years of Remicade infusions. Will you have to wear compression hose once the legs heal up? I am suppose to wear them all the time, I have constant swelling in my legs and feet, bad circulation . But, I live in Texas and our summers get terribly hot and I cannot wear those things in the heat, lol. I do admit to them making my legs feel better, but the heat index wins every time. I am sure they have your legs elevated too. My PCP always gets mad at me because he knows I have a hard time sitting still doing nothing and he always tells me, remember, elevate, elevate, elevate. please keep usposted on how you are coming along.
Moderator Chronic Pain Forum

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/25/2011 6:41 PM (GMT -6)   
Hi Stray *hugs* to you, my friend. I've had cellulitis many times before...the second time with it really bad. I've been septic with it once - 40C fevers, cell counts through the roof, etc. But I know the signs so very well now (something you can probably relate to), that I'm usually on the phone to my GP and on antibiotics within hours of it starting. I'm prone to it anyway - the CRPS means that I have a lot of oedema and poor circulation anyway, and being so heavily reliant on the wheelchair a lot of the time compounds that further.

This was much worse, and much faster than normal, I think probably because I'm so very run down after all the troubles with my surgery. I went from slightly red/hot to beginning to ulcerate in just a matter of hours.

I can't deal with compression stockings, because the CRPS makes me very sensitive to pressure. I compromise with very gentle massage - though obviously not when there's even a hint that there is active infection. I also use something called Tubi-Grip. Not sure if you guys have it there - probably you do, but maybe by a different name? It's a tubular bandage that comes in different sizes and can be cut to different lengths. It gives some compression but is much more gentle than the stockings. I have a few in different sizes that I can use depending on how swollen my legs are.

I hear you on the peeling legs problem too! I have two-fold issues there - my legs peel because of all the cellulitis episodes, and I have very thin, atrophic skin because of the CRPS. I use a cream that my pharmacist made up for me - it's (from memory - I haven't got it with right now) 50% liquid paraffin and 50% white paraffin and it is wonderful. The only downside is it's quite greasy, so you do have to put a bandage or something over the top after you've put it on to help it absorb. I also find that a good quality colloidal oatmeal moisturiser helps too.

Feeling better today :) My legs look a million times better than they did! Just all the open sores and ulcers annoying the c--- out of me now.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/25/2011 7:33 PM (GMT -6)   
I'm so glad that you're doing so much better. It's good to know that your dr is so fast acting when you get the infection. I hope that you can get some rest from all this really soon. Bless your heart.

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

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/28/2011 4:04 AM (GMT -6)   
Should be allowed home tomorrow. I want to tear my PICC right out of my arm though - the CRPS in my hand and arm has been getting progressively worse sins the line went in. It's much worse tonight and I am so very angry...I'm due three more doses of antibiotic so I asked nurse this afternoon if she could contact my doctor and see if we could compromise...stop the meds tonight and remove the PICC. I know he would probably have been okay with it...the only reason I'm still here tonight is because he is being ultra careful. Anyway, she came back an hour later and hadn't contacted him...just said there was nothing in the notes about when to stop so they'd take it out in the morning.

Way I'm feeling right now, think I might threaten to take it out myself if they won't do it. I don't want to be a bad patient or cause trouble but you do what you gotta do...

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 5/28/2011 8:27 AM (GMT -6)   
Hi Laura,

Just a quick note to see how you are feeling today and to find out if you're being allowed to go home today. I hope the PICC line was finally removed as you requested...it's those small annoyances that seem to cause the biggest flare-ups of pain, etc.

Wishing you well...hope you're soon home and well on your way to recuperating completely.

Hugs,
Pam
DX: Fibromyalgia, Severe Myofascial Pain, Osteoarthritis in ALL my joints, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Type 2 Diabetes, Reynauds, Visual Migraines, Drug Related Hot Flashes, Hard Start for IV's, Unable to vomit due to surgery.

Meds: Oxycontin, Tramadol, Tramacet, Cymbalta, Cesamet, Flexeril

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/29/2011 12:01 AM (GMT -6)   
Ouch!! I'm so sorry that your crps is acting up. It seems like you're doing something to help the infection, and your crps acts up. I thought that they put a picc line in your chest, or is that something else I'm thinking of? Anyway, I sure hope they take it out today, so hopefully your crps will calm down. ((((((((hugs))))))))) I hope that you get to go home today also because I know that you are more comfortable in your own bed, because I know I am. You take care, and let us know what happens today when you can, ok? Bless your heart.

love and soft 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

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/29/2011 12:17 AM (GMT -6)   
Hi Loretta. They put the PICC through my upper arm and fed it through to my chest.

I'm home, but last night I wanted to die. The pain was so bad that I was fighting really hard not to lost consciousness. They ended up calling a doctor out at just after midnight because my heartrate went up by nearly 100 bpm with the pain... I have bradycardia/tachycardia and this whole week I've been brady...heart rate went from 40 to 130 in about 30 minutes. Even the vibration of the fluid pump was so excruciating that I was crying - and I don't cry.

Then the stupid doctor told me that it was just referred pain from the nerve being pricked on Tuesday. Never mind that my whole hand and arm are red/purple and so swollen that I can't move my fingers.

And Pam - thanks too for your message. I had to make my threat. It finally got removed at 1am after I told them I'd do it myself if they didn't take it out.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 5/29/2011 6:36 AM (GMT -6)   
Hiya Laura

I am so sorry you have been through all this pain and suffering. I will be thinking of you lovie and hoping you get home and feel a lot better than you have been feeling. I send you lots of gentle ((((((((((hugs))))))))))) and I will keep you in my prayers lovie. Hope when we next hear from you, you are at home with a lot less pain honey.
xxxxxx
Suesueky

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.
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