[scubaforsythe]

Sorry in advance this is somewhat of a vent, poor me, I'm not really sure...

Ok, I was told in the beginning, by two doctors, one an Orthopedic doctor, the other was the one workers comp sent me too that this is CRPS. The PM doc, after initial visit didn't think it was. After the block, he now says yes it is.... it's real...

I thought when he told me today, awesome, now they can fix it. BUT, I arrived home, sat down by myself in the living room, like I always am, and it really hit me.

Wow, feeling all that at one time... I admire you who have been dealing with this for years and have been able to keep up the fight!!! This is huge!!!

I was told they are going to do a series of blocks that will happen every 3 days. I don't know how many they plan on trying, but he did mention if this does not work, there is a pump, that they will put in, a temp to start, then see from there. I have no other info, and really don't think I could understand it now anyways. Oh he also upped my Lyrica to 225 twice a day I will do my best not to post idiotic, drunken posts, because this is going to hit me like a ton of bricks.... yay me :/

[Littlepaw]

I am so sorry. It is overwhelming. Your characters for how you feel are very touching and I just want to reach out with a hug and a Kleenex. You want to feel relieved for having an answer but the answer is not what anyone wants to hear or deal with. I am glad they have a treatment plan. Get as much info about the pump, look at studies and outcomes etc. before going ahead with something like that.

Have they referred you for PT? Exercise, movement and ROM are so important for your recovery. You have a better chance of progressing and remission by working towards normal use of limb (while avoiding flare).

Hang in there, be kind to yourself right now and don't give up hope. You had a response to the block, maybe more of them will make a difference. One step at a time.

Sending healing love, Littlepaw

[Always_Believe]

I am so there with you! Even now I go back and forth between "This is real" and "Nuh-uh". The "real" for me came when I told my ortho (who first referred to it as "This RSD you speak of") I just wanted someone to say "Yup, that's whats wrong & I can fix it", he responded with "It's not that simple with RSD, you know that". Still...there HAS to be something...

On the plus side: seems like you have a knowledgeable PM that will try to reduce your pain diligently.

Gentle hugs

[Jennijojo]

Originally Posted by scubaforsythe

Sorry in advance this is somewhat of a vent, poor me, I'm not really sure...

Ok, I was told in the beginning, by two doctors, one an Orthopedic doctor, the other was the one workers comp sent me too that this is CRPS. The PM doc, after initial visit didn't think it was. After the block, he now says yes it is.... it's real...

I thought when he told me today, awesome, now they can fix it. BUT, I arrived home, sat down by myself in the living room, like I always am, and it really hit me.

Wow, feeling all that at one time... I admire you who have been dealing with this for years and have been able to keep up the fight!!! This is huge!!!

I was told they are going to do a series of blocks that will happen every 3 days. I don't know how many they plan on trying, but he did mention if this does not work, there is a pump, that they will put in, a temp to start, then see from there. I have no other info, and really don't think I could understand it now anyways. Oh he also upped my Lyrica to 225 twice a day I will do my best not to post idiotic, drunken posts, because this is going to hit me like a ton of bricks.... yay me :/

Hey acceptance is part of the process I need to get to that. Just can't grasp it.
Every three days? Man I wish I could have another injection before 3 weeks cause my pain is back fully and had two days without. I'm sorry this was confirmed. Im sure you, like me, wished it was something else. Hugs!

[LIT LOVE]

Originally Posted by Jennijojo

Hey acceptance is part of the process I need to get to that. Just can't grasp it.
Every three days? Man I wish I could have another injection before 3 weeks cause my pain is back fully and had two days without. I'm sorry this was confirmed. Im sure you, like me, wished it was something else. Hugs!

I would really encourage you to plan on having massages in between blocks that close together.

[Jennijojo]

Originally Posted by Littlepaw

I am so sorry. It is overwhelming. Your characters for how you feel are very touching and I just want to reach out with a hug and a Kleenex. You want to feel relieved for having an answer but the answer is not what anyone wants to hear or deal with. I am glad they have a treatment plan. Get as much info about the pump, look at studies and outcomes etc. before going ahead with something like that.

Have they referred you for PT? Exercise, movement and ROM are so important for your recovery. You have a better chance of progressing and remission by working towards normal use of limb (while avoiding flare).

Hang in there, be kind to yourself right now and don't give up hope. You had a response to the block, maybe more of them will make a difference. One step at a time.

Sending healing love, Littlepaw

Hi littlepaw I have been wondering about how to figure out what movements are the ones causing flares. My ot is way gentle with me. Not to hint to hijack just was sitting here reading your posts thinking I'm always hurting now and wondering what I do to make it this way. Never thought about certain things making it worse (besides cutting hair) any tips on figuring out what is a trigger with movement?

[Jennijojo]

Originally Posted by LIT LOVE

I would really encourage you to plan on having massages in between blocks that close together.

I had one the day of the block myself and it was wonderful! My pm wants me to continue to do that. Really gets the swelling down too! Highly recommend it!

[Littlepaw]

The hard thing about figuring out what movements cause is pain is the need to stop doing EVERYTHING, get things calmed down and then slowly add activity back in one at a time. You have to be very methodical if there are a lot of possibilities. It also helps to add time increase in slowly. SOrt of like an elimination diet but for doing things.

This is how I figured out my saphenous neuritis which I feared was spread. I stopped everything and started up again about two weeks later. Turns out I was aggravating that nerve on the recumbent bike. My doctors couldn't figure out why my whole leg was buzzing. It was fluke that I figured it out because I had an injection in my foot and thought I should lay off everything and voila, the buzzing pain stopped. It had been going on for a year!

[scubaforsythe]

I have had about a 8 months of PT, and there does not seem to be anymore in my future... I had the surgery in Sept of last year and have been working on this since...

I luckily know what the triggers are for me, unfortunately, I do not have the use of my left arm to allow me to take it easy on my right arm, so I will constantly have flare ups. This is what I got into it with my ortho, before the block, I tried to explain to him, everything I do upsets the CRPS, because that arm has to be both left and right. Every time I go to bathroom, it has to reach around to pull my pants up, washing, shaving (luckily hair growth is less ), basically all my coping skills are triggers... ugh These have been honed for 41years, I do them without thinking, and pay a major price for it. The ortho now seems to get it... Why do they not just get it when you explain it, they have to have proof???

Thank you all, this forum is definitely a godsend!!!

[LIT LOVE]

Originally Posted by scubaforsythe

I have had about a 8 months of PT, and there does not seem to be anymore in my future... I had the surgery in Sept of last year and have been working on this since...

I luckily know what the triggers are for me, unfortunately, I do not have the use of my left arm to allow me to take it easy on my right arm, so I will constantly have flare ups. This is what I got into it with my ortho, before the block, I tried to explain to him, everything I do upsets the CRPS, because that arm has to be both left and right. Every time I go to bathroom, it has to reach around to pull my pants up, washing, shaving (luckily hair growth is less ), basically all my coping skills are triggers... ugh These have been honed for 41years, I do them without thinking, and pay a major price for it. The ortho now seems to get it... Why do they not just get it when you explain it, they have to have proof???

Thank you all, this forum is definitely a godsend!!!

It might mean you go for waxing, instead of shaving. And change the types of clothing and shoes you wear. Etc.