Guys, I'm really worried
 

I think I'm getting worse....

Now, this is my first real winter with RSD, so I don't know if this is a winter thing, or if it's a "getting worse" thing, so can you help me please???

My right hand has always been worse than my left. But lately, my left has felt JUST AS BAD. Which stinks, cuz I at least had one semi decent hand that I could rely on. Now, I don't. It's just as painful now. Last night, I cried SO HARD taking a shower cuz it hurt SO BAD. I got home from work and I was in TEARS from the drive home. It's a long drive - 50 miles each way, so my a.m. commute is about 1.25 hrs and my pm commute is about 1.5 hrs. I drive with my wrists cuz it's too hard to hold the steering wheel with my hands. Before, I could stand to hold it with my left hand - now I can't even do that.

And to scrub my hair...again, before I could scrub with my left hand...now, I can't. It hurts too dam*ed bad. I mean BAD. And I had even taken a percocet 3 & 5 hours before so there should have been at least a little easing of the pain when it was combined with a fresh duragesic patch...yet it was still so bad it had me literally screaming in pain.

And...then another "twinge" that has me scared. And this isn't NEW so I'm not bringing it up when I first feel it. It's my ankles. I have this "urge" to move them in circles cuz they are "uncomfortable" - like restless legs but in the ankles. And in my left one, I feel this tug in a straight line...like there is a fishing line in there about a foot long going from where the bottom of my foot starts, up the side of my foot, over the ankle bone, and up my leg - for about 12" - I feel that when I do a circle with my foot and sometimes just when I stand up. And that foot goes numb a LOT lately. And no, I'm not sitting on it or holding it in a weird position. I'm making SURE of it cuz it is going numb so much. Thing is, that's how the rsd started in my upper limbs - cuz I have TOS up there, and those are TOS symptoms. The TOS surgery was on my right side....I haven't had the surgery on my left side for TOS cuz I got this rsd and I'm too scared t have the left side done now.

So do I panic? Do I start to think of spread? Or will you guys calm me down? Is it the weather that is making my hands feel so much worse? Does the cold weather REALLY make it feel THAT MUCH worse?

And what are your tips on washing yourself when you have this disease in your hands? heck...it's hard t do ANYTHING having to do with caring for myself. Cooking, the heat from the pan makes me flare even if it's SLIGHT. Getting a glass of milk, even a slight increase in COLD makes me flare. I'm extremely sensitive to any temp change in either direction - hot or cold. They found that out in PT. I mean, I get VERY flared up at the slightest change outside of "room temperature"

What do I do abotu caring for MYSELF if I can't even shower cuz it hurts so much????

Okay, my questions are all over the place in this post but I'm FREAKING OUT. Can you all help me before I go batty???

Hugs
LisaM

i dont have rsd and i'm just learning about it, so i can't offer you advice lisa :( just a gentle ((((((hug)))))

i'm sure someone will be along soon who can answer you questions.

Hi LisaM,

SOunds like you are going through he$% and back lately.. I know how it goes cause this is how it hits me when winter truly hits here in NY. I have RSD in my foot and ankle and leg and lower back and now in the thigh of the good leg. I am sensitive to temp changes also. I cant be to hot or to cold or else the pain is horrible and finding that happy medium is hard and once you find it you dont want to move at all!

I get the same increase of symptoms every winter and summer when it really kicks in , the winter is the worse!! Have you tried putting heating pads on your hands or at least the one that was good?? that helps me when i hit a flare or soak it in epson salt warm bath!!

Im not sure if its spreading of the weather change , it could be both, i would call your doc and ask him and see if he can change your meds or add something to it. The baclofen has really helped me through this years season change!!

Hope you feel better!! I dont know what to tell you about trying to bathe and everythign, hopefully someone on here will have some tips!!

;)
Amber

Amber,

I see my pain doc on monday. But they just gave me the percocet LAST MONTH for bt pain. I feel awful every time I go in when they have to give me something more. I can't keep asking for more and more and more. I think this is my 5th month going....Last month I told her the vicoprofen didn't work well for breakthru, they gave me that the previous month. Beofr that, I had NOTHING for bt. And prior to that, we were working on the 24 hr continuous pain. ow, I'm back to 24 hr continuou paind again. I'm so lost.......

And no, I can't use heating pads. I do use them on my back at night cuz our bedroom is so cold. But if I put anything even remotely warmer or colder than room temp on my hands, I flare. A heating pad or even a warm pack, on these stupid hands would send me screaming for the hills also. :(

Hugs
LisaM

Heya

Firstly.. don't realy know what to suggest. It might not be spreading - i know that before it did go full body I used to worry every pain was RSD.... it could be that your compensating for your arm pain with your legs (how!?? i know).

washing - i cant bear a shower.... it hurts so much you just want to scream and scream and die.. so we gave up on them.. I either bath or have really soft bed baths.. like using a really soft sponge and filling a sink with hot water and shower gel and then washing (well. with me. being washed. ) you can also make a thing so that you can tie it to your forearm if thats easier - I used to have one so even though i couldnt hold it i could sort of do bits... hair - mum/ carer does it over the bath OR you could get it washed in hairdressers every week? (they are usually gd if you explain you cant wash your hair..). or do the other thing which is increase the desense. I know that with me we have cut down baths/ showers/ bed baths to twice a week to reduce the amount of pain i have to go through (its bad enough without adding water!) ... reckon that every 3 days is enough not to smell (esp when you can't move) also.... use antibacterial wipes for hands/ face etc.. then only dealing with damp not wet.. (so no water droplets).

have you densesed into gloves?? (i wear them as much as poss now to stop air touching me... I know. pathetic). If you have then wear them when cooking. I used to hate hot / cold and was well known for poking hot/ cold stuff with a wooden spoon along the counter to avoid touching it. (which is probaly not a good thing). you can get longer cutlery and stuff to avoid the heat from the food and also maybe you could put insulator tape on your pans?:?

anywy, hope you feel better soon or that you feel you are coping better soon!!

rxxxxx

Oh Lisa that sounds so rough- and having to drive so far to work too.

Can't they try any sort of block or inj??

Is there any of the swelling or color changes near your ankles, or just the tight string feel and numbness?

I'm not all up on RSD but your post & name caught my eye.
hope you can find something for relief & reassurance.

It couldn't be HNPP??
HNPP
http://www.hnpp.org/varieties.htm
http://www.hnpp.org/surgery.htm
http://www.hnpp.org/symptoms.htm

Thanks Chemar. Eveyr time I see you post, I get that song in my head, "Funky Monkey." My nephew used to sing that when he was little and it was sooooo cute. "That monkey...that funky monkey...." I don't know all the words but I remember that little voice he used. makes me smile to emember that :)

Hugs
LisaM

Thanks, hon....My boyfriend actually suggested baths last night, and picked up a one of those long hoses with the spray ends on it so I can wash my hair. We just instlled a new shower head, cuz the stream on the old one was too strong...it hurt when it hit my skin. Now this one is softer, and I just hurt more. Yeah...it is bad to avoid things tht hurt, cuz you don't desensitize. But I noticed last week that I can no longer hold a taco to eat it cuz it's too warm now. :( I had to wrap a napkin around it to eat it until it cooled off. I have started wearing potholders just to stir my food when I cook....and I look pretty silly doing it. I have a pair of gloves that my SO bought me that is VERY soft inside that I can wear outdide also. They are the only ones I've found that don't hurt...and yes, it's to keep the air off of my hands. I've even worn them on hot windy days in the summer to keep the hands out of the breeze.

I've already taken to showering every other day and I don't like that. I LOVE my showers. Helps me to relax. .... or USED TO anyway. now it's just stressful.

Hugs
LisaM

Jo, I haven't looked for the color changes. My shoes don't hurt, and there is no burning...so I haven't checked for the color changes. I'm afraid to. I will look at the HPNN stuff tomorro, as I'm on my way to do the company banking right now. I never heard of that until you mentioned it. But I did see the initials mean "hereditary" and I don't think anyone in my family has this. But I will read up on it tomorrow to see if I fit those symptoms, then talk to my pain doc about it on Monday. Thank you for taking the time to answer.

I am just in a bad way today. I'm in a "funk" and have to get out of it before monday. If my pain doc senses this mood, she'll make me see one of those chronic pain psychologists, and I hate thoe, ya know? LOL! I have btdt and do't want to do it again. It's "not for me" and I'm not depressed really....I just have these "moments" and this is one of them....
Thank you so much

Hugs
LisaM

Lisa,
I was driving home from work today- just like you-my hands hurt to much to hold the wheel so I am using my arms- I was crying the whole way- Mine started in my feet and went to my hands- now my feet and hands feel the same but the other day my hands went to another level- The pain use to come and go, now its here for good (wrists too)

I dont want to scare you about spreading but unfortunately it is a reality with this crappy disease. I am going to ask my doc for a SGB like Debby wrote about to see if it will help my upper extremity pain.

Dont feel bad about asking your doc for more or different meds. Thats what they are there for! and with RSD you have to try different things- Im gonna try oral ketamine

Again- try not to panic- I know its easier said then done as I am panicing too.

Knowing that you have a place to come and vent is helpful

Debbie

gloves
 

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 :eek:

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

Hi Lisa
 

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

Shinzen Young
 

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.

Hi Lisa,
 

You might want to ask your Dr. about Lidoderm patches. I wrap them around the part of my hand that hurts and it does help. I also wrap the heating pad around the patch to make it stick better and to get the med to work quicker.

I have RSD in my hands, triggerfinger syndrome, carpal petal syndrome and carpal tunnel syndrome. I see my hand surgeon tomorrow. He gave me shots in my right hand when I was last in there and I just about past out. They had to let me lay down and then they had Bill to come in to help me out when I left. He gave me 4 shots in the palm of my hand at the end of each finger. He's not doing that again. They hurt. I don't know what tomorrow will bring but he doesn't want to do surgery on me because of the RSD.

About the Lidoderm pathes. They are very helpful. You can put them anywhere that you are hurting and you will see some difference. Please think about asking your Dr. about them. There are several people on here I believe that uses them.

Hope you feel better soon.
Ada

Thank you Ada, I do have the lidoderm patches, and I do use them. They help some of the time. But when the pain is just SO BAD, nothing seems to help at all. They don't seem to want to stay cuz the hands are used so much and "always moving" so being so active, those patches are very hard to keep on. LOL! I wear them to bed most of the time...helps the pain stay away, or at least to a minimum, while sleeping. I wrap an ace bandage around my hands to keep them in place...of course then the lidoderm is ALL over my hands cuz I can't stand the ace bandage to touch my skin. LOL!

Thank you for the suggestion. It's a great one. I've been known to look awful silly cuz I cut them into strips and wrap them around each finger at times. I look like a really screwed up and loosly wound mummy :) I put them on the palms of my hands, wrap them around the "fatty" part of my thumb on the palm side, then lay a strip also on the fatty part of my hand right under where my fingers start. That's where I get a lot of cramping...which is another thing I worry about. I do a lot of tendon glides to hopefully keep those tendons loose so i dont' get the deformed hands. But the more I do, it seems the tighter those hands feel. I'm relly worried about them shortening. Almost like it's inevitable, ya know?

Lisa -
I know it isn't funny at all but I basically say my hands and arms are "just for show"
They look and seem to be just like other peoples hands and arms but due to bilateral TOS and several bilateral repetitive strain injuries ,and upper extremity RSD they do absolutely nada.
I save them for what is absolutely neccessary ( and a few fun things:D ).
My morning routine of showering blowdrying and make-up sometimes feels like climbing mount Everest .
But what's a girl to do?
I take an extra long time due to the many breaks( to rest my arms- they're tired) but such is my life now and it is the only one I have .
I will not let it "have" me.

I too am a firm believer in meditation and living in the moment .
I came this way through some very bad years when I began reading Jon Kabat Zinn- a buddhist , father professor, and at the time the head of the stress reduction clinic at UMass at Amherst.

I can recommend some wonderful books .

Wherever You Go There You Are

and

Full Catastrophe Living

Buy them for the titles alone !!!!!!!!

They certainly have excellent begining mediatation tools and common sense principles on how to live in the moment within and not withstanding your current circumstance .
It is easy to read , well written stuff - not some hard core must be a buddhist to understand mumbo jumbo:)- that comes later :p


My other favorite buddhist philosopher is Thich Nhat Hahn .He has written over a hundred books and still going.He is very funny too!
He has one beginners manual called the The Miracle of Mindfulness.

So for those that think all that meditating takes up too much time just look to good old Thich ; see how prolific he is while spending many hours a day meditating .The beauty of the practice is that it energizes ,calms and nourishes your spirit and soul to name only a few benefits of a daily habit.

Lisa - I don't envy you - A TOS doc alone would tell you NOT to drive that many hours at one time . Mine tells me 15 minutes at a time and then take a break.Of course this is an impossible rule to follow to the T, but your schedule is at the absolute opposite end of the spectrum.
My body too would be rebelling big time.
Besides the need for some pain managemet adjustments,is there any way you could incorporate some lifestyle adjustments which would be extremely beneficial to your health?

Much peace

GnP

Hey

Can you wear fleece? I have really soft arm sleeves that my mum made me - they are made out of really soft fleecy material and go on under clothes etc... I have a couple of sets - 1 for my splints which cover my fingers and thumb and go up over my elbows up to my shoulder and others which stop half way down my fingers. They took abit of desense but they meant that I could keep stuff like capascin in place - also stops my arms getting too cold. Since my arms completely stopped working I have been wearing the gloves ones as it stops them from freezing (I cant feel hot and cold.. just pain).

hope this helps!!!

Rosie xxxxx

I Iove you G&P! Any chance you could work your arms while I put my legs to best use? Think of it as a Vajrayana imaging exercise, all those arms and legs in some elaborate pattern.

Mike

Why thank you Mike :)

But to those not in the know that sounds a little pornographic for this website and this thread in particular , so we better stay on topic:D :eek:

Namaste
GnP ;)

Thanks, GnP...I have printed the titles of the books, and will consider them. I'm sure you understand my reluctance, as the times I've done this it's not boded well with me...been nothing but "mumbo jumbo" so that fact has kinda steered me clear of it. I've done my own sort of relaxation to get myself to sleep at night...and perhaps that;s why this structured kind never worked...I always jut FELL ASLEEP! LOL! Or ticked off my grocery list, or hte errands I had to run, or whatever. I'm very scatterbrained as it is, and cannot focus very well, which has always been my problem. Heck, my boss told me yesterday I need to keep a pad of paper at my desk cuz my memory stinks lately. I can't remember anything and my mine wanders SO BAD that I forget something five minutes later. Could be the meds. I'm on so many, I'm sure at least ONE of them affects memory. I have TOS and RSD, two diseases that have to be controlled with medication. So my pill bottles could fill an entire medicine cabinet. But....I've also never been one to COMPLETELY AND TOTALLY give up on something just because it didn't work the first time.

I'm also not one to begrudge soeone something that doesn't work for THEM. So for all of you that meditation DOES work for, I am soooo very happy you hve found something that gives you peace and some relief from yor pain. And who knows...maybe some day I will find that it does work for me, too.

As for driving. I have a few tricks. To keep my arms from getting tired, I have my console that I rest my right arm on....my left, usually cannot rest on the door rest, so I have a heart shaped pillow (my "cough pillow" from the hospital) that I stick between me and the door. I put the top "indented" part of the heart in my ribs, and the bottom "pointed" part of the heart against the door...and my left arm rests on the pillow. Then, I have anothr small baby pillowin the car for my lap....so if my arms get tired, I can rest one at a time on my lap. I also do not grasp the steering wheel....My steering wheel ha the cross bars inside that are large enough for my hands to go THROUGH...so I drive with my wrists. I never realized what a dif. that made until I swappedcars with a friend the other day. Her husband work at the dealership I bought my car from and I needed ome work done, so we traded vehicles. She had a minivan, and the steering wheel didn't havr large enough hole for me to stick my hands thru, so i had to hold the wheel....and driving that long my hands hurt like HECK at the end of the day. I was so glad to ge my car back.

My doc, yesterday, gave me provigil to help keep me awake while driving...as that is one of the huge issues I was having.

I want to thank all of you for your help. You are fantastic people. YOu truly are. And you have such AWESOEM ideas....

Hugs
LisaM

YES! ROSIE THAT'S AN AWESOME IDEA! Than you so much!

Fleece is one of the very first things they desensitized me with in Pt! Next came bath towels. HAD to have those, ya know! LOL!

That's fabulous. Your mom could make a MINT if she would make those to ordr! I'll have to check out the fabric store. I also ran across some really neat winter gloves I think I'll be able to wear. They're really for teenage girls, but they are really very soft. Soft if GOOD for me. it's the rough stuff I can't handle...and ace bandage is probably the first stage of "rough."

Hugs
LisaM

Lisa ,
Everyone's mind wanders when they begin meditation.
Even advanced practitioners will find themselves thinking about the daily chores .bills, whatever.
Maybe that is why it is called a practice...cause you never really finish :D

However even in a 10 or 30 minute session when I feel my brain has been all over the place ,I still feel a lighter spirit at the end.

We are all scattered sometimes..
We all have thousands of thoughts going through our heads every minute.
To calm that process is not an overnight deal.
The longer you do it the easier it is to get to that place

Having said that , you will be amazed at how little will give you back so much ,so it really can't hurt to try.
It is one of the least expensive forms of pain management available to us and so many just knock it off the list.
There have been so many studies on it's positive effects on chronic pain.

The beginners way is to try and take 10 minutes out every morning and evening to just do it.
That is not asking too much .
Make it a habit.
You will be amazed at the returns.

Oh yeah and read those non mumbo jumbo books:D

Good luck and much peace

GnP