Hi Vanessa,

Don't know if you saw my post "Question for HwRSD" earlier in this thread, but it should answer your Neurontin question - unless HwRSD has different information. Basically, it's in your body for up to 14 hours and that is not affected by the length of time you've been taking it,
all the best!

Thank you! I did miss your post!

Hi Jo55,

I just "tried out" the new "Thanks!" button. But I wanted to write a note too. Thanks for all your medical info. I really appreciate all the effort you always put into your responses to people. So thorough & informative!

I've been struggling a lot lately. I've had pain on both sides of my chest (previously, just the right side, same as the bad arm). I'm beginning to think I probably do have TOS.

Hope you're doing okay! Have a great week,

Denise

Hi Artist,

Thanks for your note. Yes, I've noticed that ALL meds say they can cause blurred vision! Aren't WE lucky! But, actually, I'd been on the same meds for at least 1 or 2 years without blurred vision when I suddenly began to have the blurred & double vision. So....who knows....it's not "the end of my world."

The visit with the Neurologist left me confused about whether or not it went okay. He was about 75 yrs old or older, & his wife who was about the same age was his nurse. She was hobbeling around with some type of brace on one of her ankles. Therefore, it was obvious he didn't believe in stopping work at the usual retirement age.

So, does that mean he doesn't "believe" in stopping work even when all a person, who lives alone, can do is care for their needs, i.e., shop, cook, "clean" house, etc? And even that can bring on excrutiating pain?
Also, he didn't ask me ONE question about what I can do with my hands, NOR did he even look at my hands (which were both mottled blue most of the time I was there), much less exam them.

All he did was ask me how the accident occurred, then measured my forearms & upper arms, & then used his little "hammer" to test my reflexes in my hands & arms. Maybe Neurologists routinely don't do any other exam of the hands/arms. All doc's are "looking" for different things. Another thing, he did seem annoyed that I'd only had one EMG test years ago, and he said he may have me come back for another one, after he had time to go through my records.

So, I'm just going to "believe" it was an okay visit.

But, can anyone else with hand/arm RSD tell me their experience with Neurologists? I mean, what kind of exam do they do?

Artist, I don't know how anyone works with RSD! I usually can barely sleep at night due to the pain being worse. I think that may be my biggest fear about trying to return to work force. Is your pain worse at night? Can you sleep? The increase I'm taking of Lyrica right now is "knocking me out", but then it takes me, literally, hours of drinking caffeine to feel like I can even talk. It is after 2 p.m., & there's NO WAY I could drive right now. I havenit gotten up to my previous dose until today. Hope I adjust soon.

A couple of years ago I went through training to become a volunteer for a nation-wide program called, "Trauma Intervention Program". We were on-call 3 days a month for a 12 hour shift. I had to drop out! I became very depressed about ever being able to "show up" for a regular job after that.

Thanks again, Artist, for your note! Sorry for being so "verbose". It's the Vicodin, I think!

Have a great week!

Denise


what

I have had a very hard time finding a good Neurologist. For some reason that job must be only a fly by night wants or at least 75% of them are. I have ran into some lulu's when it comes to Neurologist. I finally found a good one a few years back, he is the no. 2 in the U. S. for MS. and I really like him but he is at a loss at what to do for me but he has such a good heart and doesn't give up on anyone.

My advice would be to keep going to them until you find one that really will do something for you. I emailed you today in answer to yours and it sounds to me like you have TOS. This is just something that you might touch upon when you do find a good Neurologist but I would actually go to a TOS specialist. The Neurolgist usually only does the EMG to decide if you have TOS and they are most always negative. As far as the EMG's I have had 4 of them and they showed nothing but it doesn't mean you don't have the problem they are looking for. If you talk to the TOS forum you will see that EMG's aren't positive for many on there. So don't get disappointed if they don't show anything. Some do and some don't.

Don't give up on finding a good one because you can see from what a lot of go through in finding the right Drs. It's like looking for gold when you don't own a goldmine full of it.

I will also say that age doesn't matter. My first hand surgeon was great but he soon retired after he diagnosed me and my TOS surgeon is up in age. I always tease him about not retiring until I get my other TOS surgeon. Age doesn't matter.
Anyway

I've had puzzling appts like that, where you come out of the office and don't know what happened...I always reckon the doctor didn't have the time to see me properly and hope it'll be better next round...

Working? Ah. Well, for a start my RSD isn't nearly as bad as many people here have it; it has confined itself to my left wrist/hand (I'm right-handed) and in the last year has "plateau'd". The one thing that really made a difference was discovering that I simply can't take Neurontin in the "prescribed" manner, I'm very sensitive to it - it works well, but completely knocks me out at high doses, feel completely stoned like I've smoked several joints (quite nice, but forget it... )

So I take a very low dose - up to 600mgs pd, but I split the capsule, dissolve it in water and take very small amounts frequently through the day, then a double dose at night. This works very well for me, and pushes the pain into the background; I do get woken up at night, I take half a zopiclone, and great care arranging my bed - pillows, etc...but still wake up often. Then lots of coffee in the morning, don't care if I shouldn't, I neeeeeeeed it!!

At the moment the RSD is really behaving itself.... I have RSI in my right hand and arm which is a bigger problem at present, plus cervical neck bone problems. Also arthritis, specially in my fingers (gone crooked). Most of the pain-killers I take right now are to help with the RSI, and to help with a permanent headache...mechanical problems from the neck ...

Know what? If anyone had told me before that you can get used to pain I wouldn't have believed them. But it's true, for me - as I said, though, my levels are usually under control - for now. Get flare-ups every now and then.

Also, I work from home. My work has always been very much a part of my life. If I live, I work...I'm doing designs for sculptures at the moment (which I absolutely love doing) - mostly on computer. Just walking the dog, I'll see something - shape of a tree, or rock, and think - oh, I can use that - so everything I do is kind of work.

Other thing is that, not to put too fine a point on it, I have no money at all. I *have to* work or my rent won't get paid. Literally. Necessity is a powerful motivator.

I don't think too far down the road...too worrying to do that, and pointless. I'm doing as much as I can to help myself right now (not enough, but still) and next year...who knows?? Not me; I live for now, and right now I *can* still work, painful though it is. It would be just as painful if I didn't work..I think working keeps my mind off the pain. What is harder to cope with are the meetings with clients etc, I try to keep them to a minimum - I'm getting very reclusive in my old age.

But, my legs still work well, my brain's fine if memory would just shape up a bit, still got a few good working parts of me...life goes on and as I said, for me, life and work are completely entwined. Yeah...life goes on...what can you do?

all the best!

Just Bumping, because I would like to see the links about the Neurontin also, and I noticed that this had falledn WAY off the page. So, bumpity bump bump! LOL

Hope everyone is doing Ok, and pain levels aren't too crazy with all of this crazy weather we all seem to be having!

((hugs))
Jose

Hi Artist,

Thanks for your reply! (Long live the coffee bean!!!!!!)

What you're doing is "PERFECT"! I'm so glad this is working for you so far. I'm hoping to "find" something to do out of my home, so, if I can't "make it" into the "office" at 8:00a.m., I'll just be there when I can! So far thought, I haven't heard of anything to be done, besides a lot of "typing" work, which I cannot do for long periods, and definitely not everyday, without bringing on an extreme flare, lasting months. Also, in my case, I need to find something to do that doesn't require too much concentration, memory, or....too much of any brain power....this is very frustrating right now.

I agree with you that you can adjust to living with pain! When my pain is "under control" I feel I like I can do more, but have to really watch how much I do, or I wind up with a 2-3 month severe flare up.

I don't know how things work in Hong Kong. Do you get ANY disability help? (Also, do you have anyone to help with the necessities of daily living, such as shopping, cooking, cleaning? I find that these can be very challenging for me). I know that I'm not able to make it on the disability "advances" I get right now. It's about $700 a month. So, I "go in the hole" over $1000 every month. It all goes on a credit card. I feel like I'm digging my own grave!

I know the meds "mess up" my ability to think clearly....memory gets worse everyday....not sure if it's due to meds, plus RSD (I've read it affects the....can't remember the name! See?....part of the brain), plus, "getting a little older". Sheesh.

Have a great day,

Denise

(Hi Jose!!)....

Hi Denise,

Thanks for asking, well, there are disability benefits here, but so minimal as to be a joke, and I've lived away from the UK for too long, so no help there - though I don't think the UK would let you starve. HK would in a heartbeat. Know what you mean about the credit card problems, been there done that...

But things have been better recently, just hope it lasts. Yes, working from home = good, but freelancing = not regular, so...it's a rollercoaster.

Meds are a problem - can't live with'em, can't live without'em, there are days when concentration is a serious problem, a real time-waster...and days when I simply can't remember what I was going to do next...I've got so much slower than before, mainly because there are days when I just sit around with a big question mark over my head and a guilt complex . But it's preferable to the pain, ya know?

Hope you're doing better..
all the best!

Everyone waiting for an answer from HWRSD, well I don't think she is going to answer. Eitther, like what happens to me alot, I totally forget which threads here I have posted on, so consequently, I don't make it back to threads I have posted on to see if anyone had a question or not to what I did post. So either she has forgotten what she posted, or that she even did post to this thread. Or she can't find where she might have gotten the info about Neurontin staying in the body for 3 yrs. I would like to have seen where that statement came from also tho. BUT then even if it does stay in the body that long, which I doubt it does from what info Artist posted (btw thank you very much for that), I would still take it as it is one drug that works for me & is also one of the only anti-epileptic drugs that I can take. I do take a small dose of Lyrica also. THe two together work well for me. Better than just Neurontin alone in fact. We all, or some of us *LOL* remember what Topamax does to 'DebbyV' it was funny but not pretty. I have been on Neurontin every day since probably Oct 2003. I have little to no side effects anymore from it. I do have the sleepies from Lyrica. I had to take my dose of it wayyyyyy down due to sleeping round the clock otherwise. No amount of coffee would even begin to wake me up *LOL*

I know I wouldn't be able to work taking all the RSD drugs I do take. I would definitely fall asleep on the job. As I would have to have a sit down job since I can't stand very long on my feet as they are where I have RSD the worst.

I agree tho with whomever it was said they get use to the pain. Yes we do to a certain degree. That in a way itself is sad isn't it??

DebbyV