[GreyHoundLover]

Hi Friends!

Re-Cap
I was scheduled, finally for a SGB about a week and a half ago but the doctor at the Pain Clinic who was to give me my shot, (now after all this and inspite of all the specialists I've seen), said she felt my doctors handed me a "WASTE BASKET DRX" and they should have ruled out other possibilities for my spreading nerve disorder such as Lyme, RA and to go to a Rhuematologist for some tests etc. Also, she said it's rare to see CRPS/RSD in more than one extremity so something else MUST be going on.

I've seen a Rheumatologist today, per her suggestion. He said the doctor at the pain clinic who did not give me my block was essentially incorrect in not giving me the shot and fully agrees with my doctor! That I indeed have Complex Regional Pain Syndrome/RSD and that it has spread. (He knew about the spreading) He was actually quite knowledgeable about the entire thing... I was surprisingly impressed today

He said she, (the doctor at the Pain Clinic) was somewhat arrogant to say such things after having seen all the Specialists I have been through and to STOP my pain control. AND to insinuate none of these other specialists wouldn't have thought to check for such obvious other causes. In other words...my symptoms would have been way more obvious if they were indeed these other things as they are more common than what I have!

He's sending his report to the doctor who sent me and said that he is going to recommend another Pain Clinic in Boston to help me with my pain. (

I'm going to have the Tick Test and my Blood Sugars tested though, in case I run into this bull again!

Okay...here we go again folks!!!!!!!!!!!!!!!!!!!!!!!

[Sandel]

I am so glad you have another good doctor, when I hear of docs saying the it can't spread crap it makes me so angry/frustrated and sad, but way to go on the new doc writing a letter to ignorant block doc ay? even if you don't see that one again it is so important to inform them of the truth.. hello wake up it spreads!

There's also someting to be said about validation as well, it is a relief in a way to know whats wrong and that you are not going crazy, but when a doc says no it's not is like having a rug pulled out from under you again.
But it would be so great if they found out it is something else like a fixable deficency.. I dream of that one.

I am also very glad that you have been able to get these apointments so quickly bud, how long for the referal to Boston do ya figure?

New doc is certainly right about the arrogance too, I think docs in the pain clinics get lordy sometimes, I just wish more docs would report the cases of spread louder further etc.. case studys for a start.. it would help wake the stoneage docs up.

How far along are you again hon? (lol still sounds like a prego thing).. since you got RSD sory I forget.
An how are the skinny dogs?

hugs
Sandra

[GreyHoundLover]

Hi Sandra,

I completely agree...Validation is good! Well...the doctor who had seen me today is having his report typed up tonight. Friday he should be reviewing it and sending it off to the doctor who initially ordered the SGB. I'm hoping his receptionist will not lose my prescription and not call to schedule again, and again and again. (Took almost two months to get that appointment, and only to be told to go home, it might be something else GRRRRRRRRRRRR)

I was injured in September 2006 by a Phlebotomist. (Nothing against Phelbotomists, honest)

Started left elbow area...spread to tricep, shoulder, neck, face and now the right hand. (That's last few months...very quickly) My left knee has been bothering me, my other knee burns a little but not much. My lower calf and ankles are swollen, shiny and discolored. (They're smaller in the morning)

So frustrating, right you are! Back to the drawing board...obsessing about what it could be. Hoping it's something I can take a pill for and I would at least feel like a normal person instead of faking it all the time. (Also a fantasy of mine.)

Obsessing about the fact that it could be something fatal...some weird deterioration of my body happening, cancer. I mean the body does deteriorate with CRPS, but I'm trying my best to keep everything moving so hopefully I won't get that far very soon.

Total, exhausting lifestyle change!!!!!!!!!!!! And just for trying to give blood is the kicker...

The doctor did give me some relief by confirming the doctor at the Pain Clinic was not educated. I mean, honestly...

But you're right, his report will mean a lot on top of my other reports from other Specialists. I keep a record of every single report and lug them around from doctor to doctor. It's like my ammo!!!!!!!! LOL

The Skinny pups are well!!!!!!! Greyhound racing will hopefully end in Massachusetts. I've been asked to help with the campaign again in the Spring, looking forward to taking some mind thought off myself for a change!

I'm still continuing with all your excellent advice...knowing I am doing something is very beneficial to my mental health with all this.

Thanx again for all your excellent help through all this!

How are you feeling? You never complain!!!!!!!!!!!!!!!!!!!! LOL

Hugs back at ya Sweetie!

[nopainever]

How are you? Not sure if you got this article but it made me think of you...

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79


Heather

[GreyHoundLover]

Heather, That was very thoughtful of you!

I'm going to print out a bunch of these articles and fax them to the doctor who denied me my first SGB because she said spreading was rare!

I'm okay today actually...I have a space heater set at 88 12 inches from my keyboard and typing doesnt make me feel like I want to poke my eyes out with a fork!!!!

How are you feeling today huh? I remember you saying you havent been feeling so well...

[nopainever]

You are Welcome...

My hormone levels are slowly returning to normal after having Skyler. So, my pain is slowly getting worse. It's scaring me. I have had two blocks in the last two weeks since my pain has returned and started my meds again. I think they are controlling it the best that they. After her birth I thought your hormone levels return to normal immediately. Little did I know, 1 month later (after I thought I beat RSD for the most part) I had a huge flare-up. The pics are under the PICS thread for this RSD site. You can see how crazy it got over night.

I am starting to have these electrical shocks through my finger tips when I touch water. Does that sound familiar to you? Also, I have developed full-body RSD arthritis, so it is hard for me to hold a growing newborn and burp her throughout the day and night.

I am trying my hardest though. I trying to be patient also. How is your pain doing?

Love always,
Heather

[GreyHoundLover]

Oh, I'm so sorry...you must feel so miserable. I can not imagine how you are able to do it...honestly!

Can you get any help from anyone with the baby????

The electrical feelings you're describing don't seem familiar to me. My fingers constantly feel as though I just got done scraping ice off my windshield on a freezing morning. I can never warm them up and it's constant...my feet as well.They are so cold they burn... Do they feel like that as well?

Are they going to perform another block? When? The lack of sleep with a newborn can't help your nerves much either!

Please let me know...I hope you get some sleep tonight and you feel better tomorrow. I expect a slow day at work tomorrow so please post if you're able...I'll check in often!

Good night sweetie

[ali12]

Just a quick message to say that I also get the electrical shock feeling but in my toes. It is horrible.
Stay strong - you seem to be a fantastic mom. I don't know how you cope.
You are in my thoughts.
Love
Alison

[nopainever]

Thanks you two...

GreyHound,

My hands and feet are always freezing and sweaty...No matter how many pairs of socks or how high the heater is set, they don't warm up and it makes my bones ache really bad.

I have had 40 plus bilateral lumbar sympathetic blocks and only 1 Stellate Ganglion Block (because I was pregnant). I imagine since I am going back to my original Dr. that started doing all the blocks (sometimes 3 a week) that I will be doing one immediately. The one from 2 weeks ago has worn off.

I actually feel a bit better today. Sky was fussy last night, but Bry took charge and I got some sleep. Now I just got her down for a nap and I can play on the Computer for awhile...lol

Ali,

You are the sweetest 12 year old I have ever come across. You are AMAZING! You have a huge heart and you reach out to everyone. I would have never thought you were 12.

Thanks for telling me about your toes. That makes me feel better about my fingers.

Take Care Sweetie,
Heather

[ali12]

Heather,
Many thanks for your kind words - they mean a lot to me.
Take care and you are in my thoughts.