Mostly pain free, should I still be careful with arm?
 

Hi everyone,

I know I'm asking a LOT of questions!! lol But I'm nervous about resumes "normal" activities. So for so good with the Lyrica, no major side effects other than if I don't have 10 or more to commit to sleep I feel "drugged" for 2-3 hour upon waking. It is helping me with the a LOT of the pain. Though I still hurt just not at a 7-8 more like a 2-3 with spikes only to 5-7. My worry is that i should still be using caution with things like heavy lifting of major housecleaning. I still have weakness and loss of coordination. So I'm thinking its just covering up the pain, and its still there I just cant feel it. So my worry is exacerbating the pain or casing further injury if I do too much. Do you think it would be wise to still "take it easy"? Or should I be able to do things like housecleaning or play guitar or type with both hands at work, all of which have been impossible up to this point.

[should I be able to do things like housecleaning or play guitar or type with both hands at work]



Are you 100% sure you don't have some sort of RSI or TOS along with the RSD?

If you possibly do have either of those, continuing with guitar & other repetitive, or heavy activities will cause more damage, the meds would just mask the symptoms.


Can you hold your hands in the stick em up position , opening and closing the hands for very long? With no issues?

*I can only do that for less than a minute. My hands turn white and get very uncoordinated. blood flow gets cut off and returns when hands are lowered.
This is normal for a small % of population, but may also indicate some level of
vascular compression.*

None of my symptoms started until the injury date. I also had an mri of my shoulder,elbow,and wrist to see if there was any nerve compression, it was ruled out. Completely normal MRI

RSI's nor TOS will rarely show on MRIs, it's another one of those unusual & baffling conditions. If there were any anomalies in the bone or ligaments those might show, but not much will show if soft tissue related.


I don't recall what your injury was, I see too many threads/posts to remember them all. LOL

I went through the same thing early on with my RSD. Once my doc got me on Lyrica, Ultram, Mobic, and Doxepin I was able to function fairly well and went back to an ALMOST normal lifestyle with pain at a 5-6 instead of a 9-10 every day. You still need to be cautious about things that can flare up the pain and try to avoid those things. Know what helps your pain and try to do those things every day (for me that included things like hot baths with Epsom salts).

My RSD got much much worse however when my pain doctor retired and then I couldn't get approval to see another one right away. As a result, I went off meds cold turkey (because I ran out) and then the pain went into high gear and NOTHING seemed to calm it down. When I finally got to see another pain doctor...none of the meds helped...not even the ones that I had been on previously. Then we did some blocks and things spread from being in just my ankle to my whole upper body.

So I would just caution you to make sure you keep up your treatment, avoid things that make you flare, and respond to any new or worsening symptoms immediately. Returning to normal activities is a good thing...and hopefully you can do that with only minor adjustments to your lifestyle to avoid things that cause flares and such like I was able to in the beginning. Good luck and take care.

Go easy....you just started the Lyrica.

So happy that you are seeing some improvement but don't get ahead of yourself; give yourself some time to adjust to the medication and likewise adjust your activities and to see how you do over a period of time.

This is a very complicated condition. Don't want to react too quickly, nor do you want to over-react. Slow and steady wins the race every time.

Thanks all,
Between the time I posted and now I realized I pushed it typing. I had to do some make up hours, it was only from 11-3pm. However taht was long enough to provethis was not a "cure-all" situation. As I got home and staqted to cook dinner.......well lets say it wasn't easy. I thought of the phrase mylate, and dearly missed, Father would quote......ahh patience young grasshopper.....Heard you on that Dad loud and clear ...do not remue normal activies or you pain will feel liek you have no medication at all.....also the coldness is spreading to my upper arm. It was only in my forearm and hand before....oh joy.....:grouphug:

as you can see from the typos....yes my hand is quite numb....I also "thought" I had spell checked, I have been having a lot of memory and perception issuse as of late....

Can't find "symptom"
 

Ok I've been having this wierd "tensing"? I'm not sure what to call it. It gets intensly painful and feels like it "tightening". Then the blood veins closest to the tensing "pop up". Like they stand out raised above the skin? I showed it to the PA at my last E.R. visit but he didn't know what to say? Its difficult when someone isn't familiar with CRPS but at the same time you would think they could offer SOME sort of cxause or direction! Like what could cause it to happen, CRPS aside. Have any of you had anythinf like this happen???Is that a normal CRPS symptom?

Also the Lyrica isn't working as well as it did the first day. I'm back up to near tears multiple times a day though when I'm not haveinf "spikes" as I call them. You know periods of time when either the ache is so strong and deep you think your limb will explode, or it's tensing so tight you think it's going to snap in two...

My "Dr."/A.N.R.P. Started me in 2x daily does of 50mg for 1 week then up to 3x daily of 50mgs. I'm also on Amitriptyline 50mg 1x daily(bedtime) And out of the Oxycodone as it was a "temporary med" until Lyrica took full effect. So back to Tramadol 50mg 2 pills up to 4xs daily as needed which I tried a day with out them, but found I can't deal with the pain so resumed taking it 3-4 times a day. I hope the Lyrica builds up enough and I can get some real relief from it, but I trying not to get my hopes up too high. The Oxycondone in combo with the Lyrica and Amitriptyline really worked. I felt fairly normal. But I doubt any doctor intown would actually persricbe a low daily does of it on a permanent basis :rolleyes: too many addicts in town have ruined for the true pain patients. I haven't acutally ASKED for anything like that though. I'm :Dancing-Chilli:

There are other opiate options other than Oxycodone, which could give you relief and don't have the media attention. With RSD it's generally considered a good idea to start with a time released option--not sure if you can get this or afford it, but it's the ideal. Something like Morphine Sulphate Extended Release even 1x day at a low dosage would probably be life changing (IF you feel you have to go down this road) and is a generic. Than you could use Morphine Sulphate Immediate Release for pain spikes a few twists a day, (AFTER you had been on the time released a few months) and this is again generic and fairly inexpensive.

Another option that has worked well for some with RSD is Methodone. This is not something to consider lightly...

I went years with only Lidoderm patches and very little else. It was life changing for me to get on a right combo of meds that help, but I still have very low function, and have very active RSD. There is certainly info out there suggesting once you start taking opiates it effects your brain negatively, making it more difficult to achieve remission. Pain medication will mask SOME of the issue, but don't expect to achieve be pain free. My goal with my mess is to not rise above level 4-5/10 very often. Much of the day I can achieve that, but I usually hit 7/8 any day I have to travel by car... Everybody's different, of course.

You want to (obviously) have the goal of remission. Many of the best options towards that goal are costly, but others aren't. Read through the stickies and spend time at the links posted there. ;)

It sounds like you are on a similar mix to the one I was put on soon after diagnosis with the exception that it doesn't sound like you are on an anti inflammatory and I also used the Lidoderm patches as needed. Oxycodone never helped my pain though...so I never took more than a week's worth of those because it just didn't touch my pain.

Lit Love is right that it can make all the difference in the world to just find the right combination of meds for YOU. It's also important to really take the time to figure out what activities flare up your RSD the worst and try alternate ways of doing things to see if that helps. For me, it makes a big difference to wear gloves on my hands whenever I am doing any activity where I may touch something cool or cold (even reaching into the fridge, touching door handles, etc). That's just one little thing of many that make a big difference in the big picture.

Keep searching for answers and the right treatment for YOU. Give treatments time to work but be aggressive in searching for things to make your life better. Good luck!

Luckily everything so far will be covered by Providence,the comp who runs the hospital where I was injured. Yes I'm hoping for remission which is why I'm going in for a block on wed. Still in trial and error period so to speak, with meds. Hopefully the block/blocks will work. Providence has been talking about a "settlement" so maybe it will help me in the cost area when I need it most :) I'm so happy they are doing the right thing! Thanks for your support and advice

And what about the "tensing" has anyone else had that?

If you don't have an attorney you probably should consider it. It would not be an exaggeration to estimate your meds and medical bills at 50k+ per year for the rest of your life, and you might become permanently disabled. Add in pain and suffering, and you could be talking a massive settlement--that you won't ever care two twigs about if you have RSD the rest of your life. Without it, you're life would be worse still, of course... And you could go into remission next week, settle, and have it come back in 10 years.

Remission is the goal, but you need to protect yourself in case that doesn't happen. And you need aggressive, expert RSD care, YESTERDAY!

Has the doc doing the block have much RSD experience? Is it being done via fluoroscopy? I am a big believer that blocks are a great thing--when done by a good doc. It can also be a very bad thing when done improperly.

Sorry for all the auto correct errors in my last post. I usually proofread, but was tired.

[QUOTE=LIT LOVE;940184]If you don't have an attorney you probably should consider it. It would not be an exaggeration to estimate your meds and medical bills at 50k+ per year for the rest of your life, and you might become permanently disabled. Add in pain and suffering, and you could be talking a massive settlement--that you won't ever care two twigs about if you have RSD the rest of your life. Without it, you're life would be worse still, of course... And you could go into remission next week, settle, and have it come back in 10 years.

Remission is the goal, but you need to protect yourself in case that doesn't happen. And you need aggressive, expert RSD care, YESTERDAY!

Has the doc doing the block have much RSD experience? Is it being done via fluoroscopy? I am a big believer that blocks are a great thing--when done by a good doc. It can also be a very bad thing when done improperly.





Yes the doctor doing the block is one of the best doctors for CRPS in my town. Hopefully this will be the "cure" but we'll see. I did contact an attorneys office but have not heard back on if my case is viable or not....
and again has anyone had that tightening or tensing that makes the veins in you fingers or wrist pop up a little? I can't find anything on it. It usually only effects small areas at once, like the first knuckle of my index finger or my wrist things like that.

I was taking Ibuprofen, but can't take it while waiting for the block. Doc said -0- NSAIDs or blood thinning substances before procedure.