Rhaeven and CRPS, how are you ladies doing?

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tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 6/27/2011 9:23 PM (GMT -6)   
 
 
       Hope you are both doing ok. We miss you and would love
 
        to hear your update. Post when you can.
 
   Hugs
Suzane
 

Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 6/28/2011 12:23 AM (GMT -6)   
I've been wondering the same thing, too.
 
Rhaevin - would love to hear how you are doing....
 
Laura (CRPS) - I've thought a lot about you.  One day, I spent about an hour reading through your blog.  It brought tears to my eyes - but I really admire you trying to educate others re: your condition. 
 
Take care and hope to hear from you two when you have time.
 
Thanks, Suzane, for posting this yeah
 
--Tina

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 6/28/2011 2:01 AM (GMT -6)   
count me right in there too! Been wondering myself as well!

Blessings and prayers to you both!

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"

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 6/28/2011 6:00 AM (GMT -6)   
Thanks so much to all of you for thinking of me *hugs*

It's a few days since I've heard from Rhaevin - she's having a lot a trouble with pain from her SCS lead. She does have a new wee dog though, who she is training as a service animal.

I'm not having such a good time either. My pain is sitting at a constant 8/10 most of the time. I'm not getting any sleep, apart from weird 'space out' episodes where I crash for maybe 10 minutes at a time and wake up with no recollection of what happened.

My swelling from the CRPS is so bad that I've put on 8kg since getting out of hospital a week and a half ago. It's making every joint ache, every muscle ache, every bone ache :( The spread to my chest is the hardest thing to deal with - taking a deep breath feels like I've got cracked ribs with electric shocks going through, and I'm getting even more tired as a result.

I've got an emergency appointment with my PM tomorrow - hoping like cray that he's got some ideas for me because I'm at the end of my rope. Won't go further, because I know those discussions aren't allowed here, but if it wasn't for my support network right now... :(

Thank you HW family - you've all been in my thoughts even though I've not been posting much.

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.

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

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 6/28/2011 8:07 AM (GMT -6)   

 

       Morning Laura!

           Oh Dear!....I feel badly for you, as a 8 on the pain scale is indeed bad. Praying for you, and hope the PM can help out. I can tell its wearing you out badly. Chronic pain is serious, and when you're at that level of the pain scale...its no joking matter. I was close the last couple of weeks..7+...and it's tough to get through.

   Our hearts are seriously with you! If we could snap our fingers and make all better, we would have done it a long time ago. Please hang in there, and know that we will be right here for you. It makes us all sad to know that one of our family members are struggling that bad.

   Please update us when you visit the PM.....again, we will pray for some good news.

   Take care,

  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"

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 6/28/2011 9:21 AM (GMT -6)   
Dear Laura, so sorry for all your suffering. Just not fair eh. YOu've got it coming at you in all

directions. Would a water pill, Lasix for ex., help take some of your fluid off.

You are a strong and courageous woman and I believe you will get thru this. I know I have often

felt those feelings you are having when it seems that you will never get better and it's rough, really

rough. My pain is always 8-10 as well and with the help of family and friends here, I am still hanging

in there. Take it 15 minutes at a time, stay in the now and don't look ahead. I find that really helps me.

I would love to read your blog if you can send me the address for it. I have looked at some kids

with this illness and I saw them suffer so terribly. Please hang in there Laura and know that

we care about you and love you.

God Bless You
Suzane

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/29/2011 6:06 AM (GMT -6)   
Paula - exhausted is an understatement :( I'm turning into a ghost - my face is so pale than mum hovers when I get up because she is so sure that I'm going to fall over.

My PM doctor I think was shocked. I don't think he's seen me this bad for a couple of years :( We've decided to try a stellate ganglion block, which will knock out the sympathetic nerve supply to my right arm and hopefully reduce the pain in my arm. I'm not confident that it will work - sympathetic blocks are usually most effective early on, and six years ago I had only two hours slight relief from lumbar sympathetic blocks to help my legs, but I don't see that I have much choice. I have to wait until July 14th. He could have done it this Friday, but it would have been at the hospital where I have just had my ketamine nightmare - and then he is going overseas. He's also put me on high dose cortisone again, because there are some thoughts about this being inflammatory/auto-immune.

He didn't get much trying to follow up my problems with the nurses - just had them tell him that they must have misinterpreted what I was telling them (grrrr), but was quite supportive of me having put in a written complaint to the hospital directly. The Director of Nursing has acknowledged it and promised me that it will be properly investigated. In the meantime, just trying to stay strong/positive :(

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.

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 : 2265
   Posted 6/30/2011 1:17 AM (GMT -6)   
Oh Laura I'm so so sorry that you're hurting so bad. My heart goes out to you. Bless your heart. I read some of your blog also, and it broght tears flowing. It's just not fair that you have to go thru so much.

I really do hope that the steroids help you. My thoughts and prayers are with you.

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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 7/3/2011 8:08 PM (GMT -6)   
hi Laura, how are you doing today? still tough? i can understand how you feel because i too am often at the end of my rope. So much pain i feel like i am going crazy. I am so sorry for all that you are going thru.
We are here for you and we care about you.

Does anyone have any contact with Rhaevin?


hugs
suzane

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 7/3/2011 11:47 PM (GMT -6)   
I emailed Rhaevin Friday and got an email back yesterday, and she is having a really hard time with her SCS. She turns it up enough to cover her pain, and her lower body starts shaking and she has to walk with a cane. She said that her hands shake so bad that she can hardly type, crochet or anything that she enjoys anymore.

Her pain is worse than before the surgery. She said that she was going to call her rep about balancing it out where she gets better coverage where she needs it, and to where her legs, etc wouldn't be involved.

She sounded very depressed and upset. She could really use our good thought and prayers. I told her that there was people here asking about her, and that we all care and are here for her.

I really do miss her here at the forum, and she was always emailing me before the surgery, and now I hadn't heard from her since the surgery except maybe 2 times and it had been about a month since I had heard anything from her. I'm worried about her.

I sure hope she feels better soon.

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
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 7/4/2011 8:29 AM (GMT -6)   
Loretta thanks for letting us know, though I'm sad to know how much she is hurting - she was terrified that the SCS would make her pain worse. She wasn't good the last time I heard from her either. Balancing can take time and there can be a lot of nerve irritation to settle down after surgery - I just hope it's the case for her.

I feel almost guilty to complain about how I am, knowing what she must be going through :( My news, for what it's worth - the steroids did nothing, so I am just waiting for my nerve block on the 14th and hoping that it brings some relief. I am worried though - I had an okay couple of hours today that I spent doing some sewing and pricked my left index finger with my needle. Tonight I have an icy cold hand and nerve pain through my left hand. Ridiculous that that is all it takes for me these days to flare.

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.

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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 7/4/2011 9:29 AM (GMT -6)   

 

    Thanks for the update Loretta. Poor girl, what a terrible time of things she is having. I pray that

   she will get some relief soon and not suffer so terribly. Does she live in Australia as well? She has a little

  boy right, and lives at home. Thank goodness she has the support of her parents.

 

   Laura, I can't remember if I saw someone write that you had a blog about your illness. If I am right,

   I would love to read it if you don't mind sharing. Thanks. Hope your day is better. Sorry about the

  needle poke. here you were, trying to do something nice and that happens. Poor you. Hang in there girl.

 

Hugs

Suzane

 

 

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