PM Appointment tomorrow...wish me luck

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 9/1/2011 6:45 AM (GMT -6)   
Hello to all my HW Friends.

An update first of all - I've tried to refrain from venting, but I'm really struggling. My CRPS started flaring again a few weeks ago and really blew out of control again late last week. I've gained more than 10lb in oedema fluid weight in a week and my skin is close to splitting. The swelling in my arms has set my CTS off again too.

My back is beyond painful too - some of you might remember that I had some heavy falls a few weeks ago and fractured a vertebrae. I had to have a pulmonary angiogram, because I had a lot of chest pain and my doctor was concerned about a blood clot in my lung. Luckily there was no clot, but the CT scan showed that I actually had half a dozen fractured vertebrae. The fractures are causing major referred pain through my ribs and chest - and hot bony CRPS-like pain in ribs. It's also interfering with my SCS - no damage or movement around the lead, but everything is so sensitised that turning my stim on sends burning pain through my back.

Had another blow today. I have pretty poor eyesight anyway, and went back today to get my eyes rechecked because my vision's been getting worse. Also been getting a lot of problems focusing, double vision, headaches, etc. Been told that it appears as though my brain is no longer recognising my right eye properly, and that this may be due to further spread of the CRPS.

I'm seeing my PM doctor tomorrow, and hoping like crazy he can do something for me. My pain has been at a constant 8 or 9/10 for a couple of weeks now. Waiting to hear too whether he has managed to get access to IVIG therapy for me. Thoughts, good wishes, crossed fingers, etc., would be greatly appreciated.

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, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 9/1/2011 6:51 AM (GMT -6)   
I am so sorry Laura. I have no real words to express how much I feel for you and your situation.

I really really hope you find the answer to your pain at your PM apt tomorrow and can find relief soon!

All my best!
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.....

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 9/1/2011 11:55 AM (GMT -6)   
 
        Laura,
 
          I second the same feelings retiredmom has for you. While I struggle with only a couple of issues, you on the other hand are dealing with multiple and difficult health issues.
 
      Please know that we are thinking of you, and that we ernestly hope the PM can help you with the pain spike. Were so sorry you are suffering this badly. shakehead
 
        Take care, and please report back when you can.
 
     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"

Outdoorsman
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 9/1/2011 1:36 PM (GMT -6)   
Laura,

All of us will keep you in our thoughts. Sending well wishes for pain relief, a successful PM appointment, and IVIG therapy. And you have every right to vent, we'll always lend a listening ear!

Outdoorsman

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 9/1/2011 4:04 PM (GMT -6)   
Hi Laura, just a little note to tell you how very much I am praying for you.  I will light candles and just pray you well I know that everyone on this forum is really on your side.  Thats a whole lot of people, we simply cannot be ignored.  So you go with the knowledge that so many people are with you in spirit, and you will come out of this so much better.
 
I say so, so it will be.  lol.
 
Seriously, you will be in my thoughts, good luck to you my young friend, who has a whole big life out there to live.
 
Take care, let us know how it goes,
 
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

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 9/1/2011 9:48 PM (GMT -6)   
Hi Laura I'm so sorry that your pain is so much worse. I hope that your pm doctor can get that IVIG treatment for you and that it helps you. I'm praying the he/she can help you with the pain spike that you're presently having. Take care.

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 9/3/2011 1:20 AM (GMT -6)   
Not the most productive appointment I've ever had. He had a visiting doctor sitting in - think she is doing further training in PM. He asked me first if it was okay for her to be there and I said yes - normally it's fine, and I like having the opportunity to educate the medical profession as far as possible about just how severe CRPS can become and the sorts of complications it can produce...even many PM doctors aren't aware of what it can do. What I didn't expect was for her to spend the entire consult staring at an endocrinologistme as though I was some sort of bizarre grub under a microscope - and having already agreed to her sitting in I didn't know how to say that I'd changed my mind. So in the end I didn't get to raise any of my new/worsening issues with my doctor at all because I just didn't feel comfortable doing it with her there listening in.

The only thing to have come out of it is that he is still going to try to get the IVIG treatment for me, and also wants me to see my GP about arranging bone density scans and referral to an endocrinologist (another doctor...just what I feel like right now...) because he believes (as do I actually) that the only likely explanation for all my vertebral fractures is significant osteoporosis.

So - I've sent him an email to tell him everything I couldn't tell him in the consult, and hoping he replies soon, but I'm angry, in a lot of pain after more than two hours in the car yesterday, and frustrated. Hope this finds all of you doing better than I am.

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, Midodrine, 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 9/3/2011 3:16 AM (GMT -6)   
Gosh Laura, I am so sorry to hear that things are still rough for you. I just can't imagine all the pain you are having. And all those cracked ribs, oh my. You have so much going on. I pray that you can get even just a bit of relief soon. You are one strong and courageous person, Keep hanging in there and do it one day at a time, even one hour at a time. Sorry your appt didn't go so well. I hope your dr. answers your email soon. Keep us posted as to how you are doing. Even if you need to vent all the time. We do care and understand.

I'm praying for you my friend.
Take care
Suzane

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 9/3/2011 8:37 AM (GMT -6)   
 
        Laure, I too am terribly sorry that the appointment did not go well. shakehead   Lets hope the email will find it's way there, and maybe it will grab their attention enough to take some action on your behalf.
 
    Feel free to vent here anytime, and we will support you fully! You have been through so much and are still struggling with major issues.
 
        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"

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 9/3/2011 11:36 PM (GMT -6)   
Laura, I'm sorry your appointment didn't go well. I hope that the email will get you some help - you shouldn't have to be in so much pain. Sending thoughts and prayers your way.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16408
   Posted 9/4/2011 1:59 AM (GMT -6)   
Laura, thats awful what happened at your appt. I hope your dr checks his emails frequently and will call you soon to talk about what is going on with you. It was like a wasted appt for you since nothing got resolved. I don't blame you a bit for being angry.

Let us know when you hear back from him.
Moderator Chronic Pain Forum

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 9/4/2011 8:36 PM (GMT -6)   
Hi Laura It's terrible that your doctor didn't talk about your extra pain and that you're still hurting so much. Hopefully your doctor will be getting back to you ASAP. Tomorrow is the holiday, I hope you are able to enjoy it.

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

educ8athome
Regular Member


Date Joined Aug 2011
Total Posts : 79
   Posted 9/7/2011 9:27 AM (GMT -6)   
Laura,

Have you heard back from your doctor yet? I've been thinking about you.

Cathy
I am unable to come up with a clever signature. I don't even really have a true diagnosis. I am on percocet and robaxin for chronic hand pain. So, in lieu of a dx and all, I'll just say that I am the daughter of an awesome and mighty KING, THE King of Kings and it is only through Him that I am allowed to live each day.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/7/2011 6:41 PM (GMT -6)   
Thanks all of you for your messages - it means so much to come on and read *hugs* I hope you're all having okay days.

No, not heard from him - which I'm hoping means he's gone away again rather than he's not answering me :(

Ended up having to see a GP yesterday - not mine, as HE'S on a month's leave - because I had another really bad fall yesterday morning. Managed to somersault but knocked my back and ribs as I did (must have looked impressive though...shades of ex-gymnast Laura ;). Sure I heard something else crack and I had searing pain in my back beyond anything I've had so far. He's increased my oxycontin and approved extra endone (oxycodone IR) if I need it. Also referred for more x-rays and a bone density scan, which I'll have done tomorrow.

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, Midodrine, 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 9/7/2011 6:57 PM (GMT -6)   
Oh my gosh Laura I'm sorry to hear that you had another fall. shakehead What caused you to fall? I sure hope nothing is broken. You take care. Bless your heart. It seems you can't win for losing. *hugs*

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

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 9/7/2011 7:19 PM (GMT -6)   
Oh my gosh Laura I'm sorry to hear that you had another fall. shakehead What caused you to fall? I sure hope nothing is broken. You take care. Bless your heart. It seems you can't win for losing. *hugs*

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 9/7/2011 7:55 PM (GMT -6)   
 
 
   Oh my gosh Laura, poor you. Your body must be in so much pain. I hope you have not fractured anything.
 
 Sorry you haven't heard from your doctor. Can you phone the office and ask the secretary to pass a message
 
to you doctor? I am glad you saw another doctor and got an increase in pain meds. I sure hope that helps you.
 
Let us know how you make out in the next few days.
 
Take care
Suzane

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/7/2011 8:07 PM (GMT -6)   
Thanks for the hugs Loretta. How are you today, my friend?

I feel that way too at the moment. One step forward, One hundred back.

I'm falling because of my blood pressure. I've got low BP anyway, and 'orthostatic hypotenstion' on top of that, which means that when I get up from lying down my BP drops and I get dizzy or faint :(

Hoping nothing is broked too, but the pain is bad. I don't know why I'm on the computer actually...other than trying to distract myself :(

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, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 7:07 AM (GMT -6)   
Well, looks like my extra pain is justified :( I've got another bad compression fracture at T7 and T8 and vertebral endplate fractures as well. So between compression and endplate fractures, I've broken everything between T5 and T12 :( My DEXA scan showed severe osteoporosis of my spine and osteopenia of my hip so have to go back to the doctor on Monday to discuss management or more likely, referral to a specialist.
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, Midodrine, 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 9/9/2011 9:50 AM (GMT -6)   
Oh my Laura, this sounds horrible, all those fractures in your thoracic spine. I know you don't want to be immobile just being in bed, chair or W/C but you are having some terrible falls with fractures. I would think you need to stay in a lazyboy, bed, couch for your safety. You live with your mom right? Is she home to help you all day or does she work. I am just really worried about you hon. What are they going to do to get these fractures healed up? Keep us up to date on your specialist appointments. I am so so sorry all this is happening to you. You are such a wonderful young lady who has much courage and strength.
Hang in there Laura.

Suzane

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 10:45 AM (GMT -6)   
Hi Suz,

I'm mostly in bed at the moment. It's the only place I'm in less pain anyway. My mum would usually be doing a lot but she's been sick too - she was bitten by a spider a couple of weeks ago and got quite bad cellulitis in her leg. She's on the mend now, but means she has to spend a lot of time sitting with leg elevated as well and my dad & brother are hopeless about doing anything around the house :(
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
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/9/2011 12:31 PM (GMT -6)   

 

         OH WOW Laura!....I had not realized that you had fallen, until I read this update on you! shocked

     I think were going to have to strap you down to keep you safe! wink   I so sorry you are having a very tough time of it there. And your mum's problems on top of that is adding to the difficulty. Prayers out to the both of you today!

      Keep us informed please, and do be very careful!

     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"

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 9/9/2011 11:45 PM (GMT -6)   
Oh Laura I see why you're falling. Please be very careful. Take it slow and easy my friend. I'm sorry that you have have all those fractures. T fractures are the worst place to have them. Mine is at T9 I believe it is. I sure hope they can get you a back brace or something so that you can have some support for the osteoporosis.

Oh my goodness. I'll be praying for you and your mom as well. Your dad and brother need to get it in gear, and start doing things around the house.

You take care. I hope you can get some pain reduction.

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 9/11/2011 1:50 PM (GMT -6)   
 
  How have you been doing this weekend Laura?
 
I hope you are having a bit less pain.
 
Hugs
Suzane

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/11/2011 2:42 PM (GMT -6)   
Hi Suzane,

Just been resting in bed this weekend. A lot of pain though...It's 5:45am as I type this and other than a 20 minute nap yesterday evening I haven't slept :(

How are things with you
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
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