Hi Friends,

I went for my first SGB today. I was nervous, excited all at the same time. I was hoping for some relief to indicate this was the right road for me to some sort of remission.

Today after prep, the doctor met with me. She was very nice and very concerned that the doctors that I had seen did not rule out diseases that would cause some of my symptoms. So, she decided to try to contact my doctor as I waited. I guess she had no luck and told me she did not feel comfortable performing the procedure unless everything else had been ruled out. She said she has been practicing in pain management for years and has seen many people with CRPS but it's very "uncommon" to see someone who has it in 3 extremities. I was a bit confused, frustrated by this.

Since September of 2006 my symptoms started in my left arm (immediately following an attempted blood donation.) Months later after I was convinced my muscle or nerve was healing I developed stabbing, burning and swelling in that arm with ghost like pains of when I was stuck with the need during blood draw. I've had continued swelling since May of 2007 in my left arm. My left leg had swollen during the day and the doctor and I assumed it was from office work. (Sitting around at the desk too long) But now my lower legs burn if I stand too long, are red and shiny. My left leg is swollen, considerably and noticeably. My knee is bright red at times, especially when getting out of the shower and it feels stiff or difficult to bend at times. All fingers, on both hands are now swollen, shiny and red and hurt to bend. As I type they are cold and my tips are numb. I've had flair-up affecting my entire body, full body burning including the head and face. (Even my lips and teeth also eyes) My neck also is consistently burning, like a full on sun burn that never heals. I will say some of the message therapy on my C-Spine did reduce the burning for a while, which I was happy about. I'm very sensitive to temperature, cold makes my skin reddish/purplish which now all doctors are seeing. My joints are all stiff, difficulty shifting at night because of my lower back. Sometimes it get's so stiff it feels like I'm 100 years old and my husband needs to roll me over. (I'm only 34 years old)

She wants to make sure I don't have Lyme Disease and test for other similar diseases which host some of my symptoms. I don't know of any that do host these symptoms. Maybe it's a combination of things. I know CRPS can cause other diseases as well. Like Fibromyalgia and Mysofacial Pain Syndrome. I must have some Raynards in there...I just don't know.

I'm growing increasingly frustrated. I'm sick of feeling things are getting better and then feeling worse. I'm really worried as things seem to get worse and now "back to the drawing board". Very frustrating, I'm sure someone here, if not all of you can relate to my frustration. I guess that's why I'm posting.

What else could I possibly have?

She did say that I had a bone spur on my C-Spine, I know I have a joint effusion on my left elbow (discovered after my first MRI after symptoms started.)

I'm trying to continue working like a trooper, provide for my family and not get so frustrated with the kids. They don't understand, two of them are in the selfish teenager modes. They're helpful but still ask a lot of me...which is normal but I don't know how much longer I can do this. Everything is so tiring. I can't even tell you if it's mental or physical exhaustion...maybe both.

She's increased my Nuerontin to 1200mg a day from 600 in hopes it will alleviate some burning while we look for other causes.

Anyways, any thoughts friends? I'm trying all your suggestions and they did work for me. For now though, they seem to not be which might be normal but it seems whenever this thing comes back it comes back harder.

You know, I put my Christmas decorations away and I put them away with the mindset that next year someone else might have to decorate the tree and I wanted everything to be easily accessed and in order. I was nearly crying as at this thought. I can't count on anything in the future.

Oh what a downer! Sorry..

Gentle hugs, Greyhound. I am feeling a bit like you are these days. I think I have been in a lot of denial and came here to the forums to learn more and understand my condition a bit better. I am in reality now and think about what tomorrow will bring. But can't give up the fight and need to stay busy. I am working full time, getting my Master's Degree in Special Education, and teaching Lampworking at Pratt ARt school one day a week. I also make my own jewlery and sell on ebay and art festivals.

I need to have the balance between work and my love of art. But than the RSD is just peeking in the middle all the time. I am going to go for each day and be thankful at the end of that day for what I accomplished. I don't feel it all the time and mostly now a bit down but I can't stay there long no matter how much the pain is getting to me. I am doing some planning on what to talk to my Dr. about on my appt. on the 18th of this month. I need to be more proactive on what it is I want. Such as another nerve block would be really awesome to see if I can get this to go down some.

Take care and I hope that you have a good day tomorrow.

Hey there,
I am so sorry about what you are going through ((hugs))
How is the swelling?
I wish I could say more
Thanx
Alison

I just posted to Vanityfare about my health and what I went through. Both of you sound a lot like I was when I first started.

When I went to see the TOS Drs. in Denver they added on CFS, CPS, Central Sensitisation Syndrome.

When I went to see the lung Dr. he added on Raynolds along with other problems with my breathing.

My story is too long but I started out after all of my tumors were removed I ended up with back problems. I woke up one morning and couldn't get out of bed. My Dr. put me on Hydrocortozone and Valium and I couldn't take either. They got me out of bed but I fell several times on them and ended up with TOS on the left side. I was sent to see an Osteopathic Dr. and she popped all of my bones and caused me to have TOS on the right side along with Ulner Nerve intrapment, Carpal tunnel, triggerfinger, and rotator cuff problems.

I went to see my TOS surgeon that did my TOS surgery and he figured out I had RSDS and sent me to a hand surgeon that was very up on it and he figured out I had all of the other problems mentioned above. I saw a Rhemutologist that diagnosed me with Fibro. I was diagnosed with MS 3 years ago by my Neurologist.

The reason I am telling you about these problems is that there is a possiblity that both of you are dealing with more then RSDS but it takes the right Drs. and Specialist to figure it all out.

It's took me 8 years to get to where I am now. I still have the RSD pain some in my right hand and arm along with some other areas but if anything flares I go in and get triggerpoint injections in that area.

The SGB's helped me a lot. They helped take care of some of the pain and gave me more use of my hand and arm.

As I told Vanityfare, I am on Methadone which a lot of people on here can't use. That came only after trying every other pain med out there. Couldn't do any of them. When we finally came to the Methadone, it was like a miracle that I could take it and it did help.

Both of you have a long ways to go but you will get better when you find the right Drs. and the right treatments.

Greyhound, I don't understand why she didn't go ahead and do the block to help rule out the RSD and at least get some of it into remission. Even with other issues the blocks might have calmed down the RSDS. She is wrong about not having RSD in 3 extremities. If that were the case, there wouldn't be people out there with full bodied RSDS. I have it in several areas and also inside of me so anything is possible with the RSDS from what I have seen on this forum and others.

I hope both of you start getting some relief soon.

Ada

Awww bid soft hugs hon, I hope you are feeling better soon..
I would go to your doc ASAP and get him to rule other possibilitys out.. also I would sugest you send that doc a copy of Patterns of spread (link below).
And as Ada says it is very possible to have another disorder piggybacking this one.. seems to me that another like lymes wouldn't show up in 3 limbs but we know RSD does..

There is such a shocking lack of knowlege in our medical system its apalling, and that doc is an anethesiologist.. actualy 2 years ago my anesthesiologist did the same thing but ended up doing bilateral blocks eventualy, but ignoring the rest because "RSD did not present in four limbs and claimed I had lupus or fibro.. lupus was negative after a false positive, and I do have fibro but not many points. I will also send you a copy of "RSD a case of full body involvement" if you email or let me know where to send it.

The SGB would have told them if your pain was sympatheticly maintained pain. Request your doc do a tripple phase bone scan it may show nothing and that dosnt mean its not RSD but it may (65% show positive) show a pattern typical to RSD. Also get your doctor to list your signs he sees on file re; shiny legs, color changes etc for all involved body areas.

soft cyber hugs bud I know it can be very difficult, and teens and work, rough stuff my friend I admire you very much, I can't imagine having to deal with this when my kids were younger and work as well, get those kids helping more is all I can sugest there but raising many (mine and many street kids) teenagers it seems, I do understand your teenage delema sometimes they are on another planet lol, I'd also sugest a good talk with them again about your needs and exactly what you are expecting of them.

You have our ears and shoulders and hugs,

Sandra

Attached Files

Patterns%20of%20Spread[1].pdf (152.6 KB, 70 views)

Thank you friends for understanding my feelings at this time. Your support means so much. It's such a loney thing to have since I can tell people but they could never completely understand. I try to hide the pain, some days....like today it's evident. If people ask if I'm okay I just say "yeah!" A few people knew I was lying...I guess sometimes it's difficult to hide with those who know me well.

Good luck to you Vanity. It does sound like you understand the frustration of trying to do what you want and having this thing invade or overtake your ambitions. It's frightening when there is so much life ahead and you don't know where you will be and if you will have any control over it.

It stinks that we rely so much on doctors to help us and they just don't know.
It's frightening. I'm pretty sure I don't have Lyme Disease...I am, however convinced I may have some sort of TOS or arthritis symptoms. Whatever the reason.

I agree with you, Ada and Sandra...I don't understand why she would want to increase my meds but not block the pain which would also help diagnose. I was bringing points that I've learned about the disease, and offering fax about spread and how I believe this is Venipunture CRPS which is noted for fast deteriation.I felt she was getting a little frustrated in the fact that I was telling her what I knew and questioning her decision. She at one point said "I've seen a lot of CRPS...its very rare to see it in 3 extremeties" and walked out quickly to try to reach my doctor.


Thank you Ali for your dear wishes. I hope you are well...how are you????
How is your arm hun?

Thank you once again for your guidance Sandra. You've always been amazingly helpful to me. Yes, please email me that document...I would be so happy to share with these docs. I'm so sorry you've been through similar experiences. My email address is: Goytunlover@gmail.com

I am going to suggest a bone scan A.S.A.P. I know my OT and PT have been writing in detail the descriptions of my arm etc. I've asked for reports from my doctor who has noted these appearances as well. So we have a positive check on that at least!

I'm hoping for more painless days ahead for all of us!

Pain Free Hugs Back to all of YOU!
I'll let you know when I hear from the doctor.

xoxo

GHL

ghl i am so sorry you had to go through all of the prep only to be told that it is unlikely your symptoms qualify you for the procedure. as others have suggested i would have your original doc call the doc who was supposed to do the procedure and have a chat. if they both agree other things should be investigated so be it, but your doc either needs to be in control of your care or send you to someone who can adequately do so. the largest problem with rsd/crps is the variation of symptoms...there is no set standard to follow. many doctors seem to throw around numerous diagnosis because it equates to billable hours. i know it doesnt seem like it now but if you can get both the docs involved to discuss your case it will at least be a step in the right direction...and you wont end up lying on the table prepped and told to go home.
hang in there with this disease it often takes a long time to walk the path to answers, but eventually you will find a doc who will help to get you as back to normal as possible.