PM Appointment tomorrow...wish me luck

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

 

        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.

        Take care, and please report back when you can.

     SE

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

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

 

        Laure, I too am terribly sorry that the appointment did not go well.   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

     

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.

Laura,

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

Cathy

Oh my gosh Laura I'm sorry to hear that you had another fall. 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

 

   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

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.

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 :(

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

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