I use anti-vibration gloves to help me drive. I forget the brand name now, I am at work. I'll try to remember to get the brand name for you when I get home. They have an gel in the palm and fingers for people who work with weed eaters and heavy equipment to take out vibration. "Regular people" think they are amazing when they have tried mine... to me, they take out about half the vibration, since I am now overly sensitive to vibration. For me, they make the trip to the Cleveland Clinic bearable - it is 3 hour drive one way for me. They are lovely soft leather. I had to order several types and sizes till I found a size and style I could wear. (the company gladly took back the ones I did not want) Most had tight cuffs and my hand swelling would make them too tight -- I finally found a style that had a velcro tab closure at the cuff - so I just leave them open there. BUT - I don't have all the sensitivity on my hands... just the sensitivity to cold, heat and vibration. My cold/heat is not as severe as yours though. So, this might not help because you may not be able to stand the leather. However, it might be worth a call to the company. They may be able to fix you up with a piece of the gel material, say 4x6 for each hand, that you could hold on the steering wheel, or pin to it or something. They seemed very accomodating when I was working with them. I'll look the name up for you in the next day or so if I forget tonight when I get home.

I know in this modern day, everyone showers once or even twice a day. But, I was having such a hard time with my skin about oh...15 or 20 years ago. I went to a board certified dermatoligist. I found out I am allergic to sodium laural sulphate (sp?) the most common thing it seems in body washes, soaps, skin cleansers. It's what makes things "suds"... I have an awful time finding things that do not have it, both for showers, baths, or hair shampoos. He told me at the time that people would have many less problems if they only showered or bathed 2 times a week! Clean the important parts with a "sponge bath" and leave a bath or shower to twice a week. I usually do 3 times a week, unless I have been working outside or have otherwise done something where I have become very sweaty, or am going out to dinner or some social event. My skin improved dramatically. Of course, you don't dare tell people that - they think you can't be clean if you don't shower once or twice a day! But like that doctor told me, people survived a LONG time on this Earth without constantly showering.

Lisa, I don't know how else to help you other than have you tried chronic pain meditation? Won't help you shower, but when you are crying as much each day as you are, it will help you be more calm. Before I tried the meditation, I was crying 6 to 9 hours a day, sometimes more. The book /tape that worked for me, and I tried a few (!) was Shinzen Young's "Break Through Pain". On the old BT board, there was a long time member who had been to a few of Shinzen's retreats that used to have some PM conversations with me about Shinzen and was a great follower of his, but I can't remember his name. He posted on the board about Shinzen also. Since you know how to search those archives, you could search for Shinzen on there to learn more. The book did me a lot more good than the CD-- I got the basics from the CD, but just used it as a starting point. In the book though, there is a lot of good info about pain and how it affects us. If it gets bad while I am at work, I'll go in to the restroom stall and do some of the meditation for 10-15 minutes and calm myself down, and it will really lessen the pain. Or at least it feels that way - which is really what is important. I think Young's meditation has helped me be able to stay working and stay off the heavy pain meds. It helps take the fear out of the pain, and to make me more calm about it. Hard to explain. And, I don't feel I am very good at it. But, I keep working on it, because it has worked.

(((((((((((((hugs)))))))))))
Jules

Lisa, it sounds like maybe you *should* go back to the doctor, remember that, since each of us is different, juggling the meds is something we can only get right by trial and error. Which means that you try it and if it's not right you report it and try something else.

Also, in the long-term, it doesn't help anyone (most importantly it doesn't help you!) to continue with a regime that's not working - if you're having such a hard time then - hey. you know I'm no doctor - the type of meds or combo isn't working *for you*.

The doctor only knows what you tell them so even though you run the risk of being labelled a complainer (aren't we all!!) and get threatened with the pain psych, if it were me I'd brave it - the doc should be able to see, if they're any good at all, that you are serious, and need to try something extra or different.

Oh yeah, showers are difficult. I muffle the head with cloth and manually guide it by hand, but then the water pressure in my flat is like water cannon

Good luck, the meditation thing is really worth a try too - I think you can get the Shinzhen Young books as tapes, too.

all the best

Thank you Debbie...I know I'm not alone. I know that's what the pain doctor is there for, but I don't want to be "labeled" as an addict or anything. I have a "fear" you see...back a while ago, I was "banned" from seeing my regular doc cuz he claimed I was "getting prescriptions from multiple doctors." I WAS NOT! I had moved about 60 miles away from him. I was attending PT at that time, and had asked the dr. at PT to TAKE OVER writing my prescriptions because he was more convenient since I was there 3-4 times a week. I had to have actual paper prescriptions, and it was too inconvenient to drive to 60 miles to pick it up from my family doctor so I just asked my PT doc to take over instead. Well, my family doc didn't bother to check and make sure the rx'd didn't CROSS DATES. Instead he just saw that someone else was writing them for me, and decided to ban me not only from his office, but from the entire hospital he works out of. So now, I'm a bit leary of asking too much.

Also...I have a new family doctor, who is the one who referred me to this pain doctor. I don't LIKE this family doctor, nor do I like the hospital he works out of (it's dirty, the care isn't that great, etc) but I don't feel like I can search out a new one because A). he's the ONLY DOCTOR in the 7 years I've been dealing with this that has EVER referred me to a pain doc (this should have been done years ago); B). he's the only one who has BELIEVED me; and C). he IS very caring. But I'd like a female doctor, and I'd like a doctor who works out of a better hospital. The office he works out of is pretty low class also...and he's an "intern" so he's really only in the office 1-2 days a week. So if I'm ever sick and need to get in right away, I can't see him anyway. So I am having some issue with my care . And all of this makes me afraid of asking hte pain doc for too much. I've already gone UP on the fentanyl patch, and gone UP on the BT meds, and changed meds quite a bit in the 5 months I've been seeing the pain doc...so I don't want to come across as an addict. I also write on the little sheet that I fill out every month that I'm doing better than I was when I first started going. And I WAS...until NOW.

I was reading about spread in the links in the RSD Library posted above, and it said the "average" spread time is 12.8 months. 12 months for me will be in December. Now, I know some people go YEARS before spread happens, so I'm not "putting ideas into my head" but it's a concern of mine. Right now I have a certain amount of "freedom" that I don't want to lose. And like you, my pain is "changing." It's constant now, whereas before it would come and go. And it's so INTENSE now. I mean, it was intense before, but maybe since it's so constant now, it seems so much more intense. And Im sure my mood doesn't help. I feel AWFUL that my SO has to do so much more around the house because I can't. I feel TERRIBLE that my son has to listen to me cry every night. I feel SICK about the fact that my family has to worry about me all the time.

I'm in such a funk right now. Maybe you and I can just crawl under a rock somewhere and just hide a while and maybe this monstr will leave us alone. LOL!

Can you please let me know what the doc says about the ketamine? I do hope you feel better soon

Hugs
LisaM

I dont know if I mentioned I did the 5 day inpatient ketamine infusion and it didnt work for me. But my doc still wants me to try oral- he feels a small dose over a longer period of time my be better

Where do u live? There maybe some who knows your area and can recommend a doc.

I know about crying in front of the family ..I HATE that my 14 year old son has to see that!!

Well- Keep writing- I have to try and get thru another day at work- Keeps getting harder and harder but we cant afford for me not to work!!

Debbie

Jules, thank you so much for the suggestion.

When I was in PT, part of the program was psych health. They evaluated me for depression, and had me take a class on how your mental health affected chronic pain. The "circle" that it created. That your mood could escalate your pain, etc. Part of that was relaxation techniques, and I also have a relaxation cd. I tried and tried and tried...but I cannot "get it." I have 5 dogs, and a 15 yo son, and my house is never quiet enough for one thing. When it IS, I find my mind "wandering" to what needs to go on my grocery list, or to what needs to be done around the house or at work, etc. I cannot grasp the concept. When I can finally free my mind enough to concentrate on the tape, I have found myself falling asleep sitting up. I can try it again, though, as there have been times that I've done it WITH the counselor and have found that I have more "energy" after doing it with her (though I felt silly doing it with someone else). I ahven't been able to do it on my OWN though.

I can give it another go...but I believe part of it may be that I don't quite "believe" in that. I know it has worked for some...like you for example...but if I don't open my mind ot it and don't believe it will work, it won't. Perhaps I will research today and convince myself that it can, in fact, work. Maybe that will help some.

Thank you so much.

Hugs
LisaM

Thanks, artist...

I see my pain doc again on Monday. I've already seen the pain psych, when I was in PT. I really don't want to "go there" again. I already know all that stuff. I've btdt and truthfully it's not "for me." But, I told Jules I'd try it again, and I promise I will. I'll give it another shot. In fact, I believe I even copied the cd to my computer here at work, so even if I can't find it at home, I know I have it here.

Jules...for your second post....I live in Michigan, Northern Oakland County. I really do like my pain doc and they are supposed to be very good. They do keep doing the "up the scale" with the medications and the protocol...but like all, they have to try certan things first and then add/take away. I've been going 4 months, monday will be 5. I'll talk to her and see what she says. I'll let you guys know what her opinion is on Tuesday.

Hugs to you all...and thank you for being such a great group of people...

LisaM

Lisa,
I am not sure what you mean by my second post, and you saying where you live???

Well, anyway, here is the info on the gloves. They are made by Valeo. I got the Model GAFS which may be just the one hand, so you may need to ask about that. THe package I am looking at is for the right hand. I originally ordered a left hand, but they sent me a right hand by mistake, and told me to keep it. One good thing is that they sell them for either hand, and they are individual, so if you only need one hand, you can get them. I think a pair is less than $15. I got the Full finger ones because that has the padding on the fingers, palm, thumb and thumb joint. The Valeo company only sells to companies, not to individuals... so I had to order from another company. I ordered from US Safety. They were very nice. You can call Valeo to find a company in your state to order from if you like, their number is 800-634-2704.

About the meditation. You said you had a meditation CD. I'm going to recommend that you get the book/CD Break Through Pain by Shinzen Young. It was the book that helped me - more than the CD. The CD guides you, but it was what he had to say in the book that really made an impact, really made sense to me. Shinzen has worked for so many years with chronic pain people, he has a real understanding of us. Here is a website that has a brief synopsis of the book. It's great that NeuroTalk will let us post websites!! It is so helpful! I've sent people to this synopsis before, and even this has helped some people understand Shinzen's approach. His book made me understand how the pain affects the body, and how the meditation can help us. In a way that just listening to the other chronic pain meditation tapes and cd's I bought in the past did not. I think he has a unique perspective. Of all the things I have tried with RSD, medications, blocks etc, I think Shinzen's book helped me the most. Through this book, I have learned not to fear the pain. This has allowed me to be calm about the RSD. I think this is very important with RSD. Once I started with this, my pain decreased significantly. My body was no longer so tense.

It seems to me that most meditation wants you to more or less, concentrate on nothing. To empty the mind, to become blank. With Shinzen's you concentrate ON the pain, you learn more about it, how exactly it feels, where it is , where it isn't. The "breath pleasure" meditation is the one that calms me down when the pain is bad. I have learned to combine the meditations together, modifying and customizing it. The member of BT1 who had been to the Shinzen retreats helped me understand that.

http://www.shinzen.org/shinsub3/artPain.pdf I hope that worked. If not go to www.shinzen.org and look on the left to "articles" then down under the heading "Applying Meditation in Daily Life" to the first one, A Synopsis of Shinzen Young's Book Break Through Pain

When I go to the massage therapist, it is very painful -- she works on my spasming muscles, and of course, because of the RSD. Before, I used to cry the entire session, often openly sobbing. I use the meditation now during the sessions. I can "go with the flow" (LOL) and be way more relaxed. It does me so much more good when I do this meditation while she is doing the massage, even though I can't go very deep into it with her working on me, as she needs to talk to me to some extent. I will still cry, but it is just an occasional tear running down the cheek, no more sobbing. Much much calmer now.

Of course, it won't work with everyone. But, I really think reading the book would help everyone that has chronic pain. Perhaps a library could get it on inter-library loan?

I did order his other CD on chronic pain after having success with Break Through Pain - but found it was the same info, just without the book. :-(

Jules

Dear Jules -

As a (fellow) Shinzen student for a few years now, it was great to see your post.

I'm listening right now to a really good interview of Shinzen that was done in August of this year by a friend of mine called “The Fourth Dimension of Spirituality.” In there, he talks about the application of “mindfulness meditation” to the various aspects of the experience in pain, so that, with mindfulness, they are experienced in an additive rather than multiplicative fashion: where each element of the experience would otherwise reinforce the other, "going from multiplicative overwhelm to additive manageability." (From there he builds on that foundation of mindfulness [Vipassana] and goes into a discussion of the Buddhist concept of leaving the limited identity, and then into Zen mysticism and the role of the mystical experience in modern neuroscience. But no one has to go there in order to appreciate his fundamental insight on the distinction between additive and multiplicative processing of experience, thereby distinguishing between pain and suffering: which is just a huge concept in it's own right.)

The interview is available online through an interesting very late night program that runs out here in LA on the local Pacifica Radio Network station, KPFK, called "Something's Happening With Roy of Hollywood." It ran on October 27, 2006, following an utterly amazing lecture from the late Alan Watts from the Sixties on "Suchness."

Listen to it when you've got about 3 hours to kick back, but they are highly recommended. In fact, the two talks compliment each other beautifully. Both are really worth listening to, although the Watts’ talk clips along at such a fast pace – one that he got to by smoking something like 4 packs of cigarettes a day – that you can probably hear it four times over and still be finding new and amazing things in there. But even on the first pass, it's just staggering, and I mean that in the best sense.

Go here http://kpfk.org/index.php?option=com...id=135&lang=en scroll down the blue column in the middle to October 27th, and then click on play in the green column on the right. [Part A.] Roy is a little talky for the first few minutes, but once the talks get going they are great.

I've put this up before in BT1, but the other thing that folks know about is the Mindfulness Based Stress Reduction (MBSR) that was developed by Jon Kabat-Zinn at the Univ. of Mass. Medical School almost 30 years ago, and now has thousands of trained instructors around the country. (I wound up getting to Shinzen through an MBSR instructor to whom I was referred by a pain psychologist four years ago last month.) This is highly focused on pain patients, in which they are taught both awareness of mind and body through meditation, yoga and small group therapy over a period of about 8 weeks. For more information, including finding an MBSR instructor in your area, go to http://www.umassmed.edu/cfm/

But please, check out the Roy of Hollywood program, which will be achieved for another 6 weeks or so. It’s a real treat.

Mike

Mike
I remembered talking to someone about Shinzen on BT1, but could not recall their name (topomax moment?) !! I know you and I PM'd quite a bit as I was learning about it. I really admire your abilities!

I have a very slow internet connection, 28k dialup, so I don't know if I will be able to give this a listen, but I will surely try!!

Thanks so much!! And, I am so glad to know who it was that had attended the retreats. Now, if I have any questions as I try to continue with this, perhaps I can ask you? I tried to find some place near me to find out more about this, but was not successful. What I have done so far has really helped with the book/cd though.

Jules

Dear Jules and Lisa and anyone else -

I don't pretend to be a model of equinimity with RSD and many times I have found and still find despair in my own experience. But that said, meditation practice and for me the whole world outlook that goes with it has really helped, to say nothing of this semi shut-in getting a whole new set of friends in his immediate area as part of the bargain.

If I can answer any questions or be of any assistance, please don't hesitate to drop me a line.

Mike

p.s. to Jules and yes, I now remember our correspondance as well, although my delay was brought on by my own analog to a 28k dialup, good old Neurontin, where for various reasons I haven't been able to tolerate any of the newer alternatives.