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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


the pain level varies from day to day, but with cold fronts and bad weather around here lately it has been much, much worse. i am on 75 mcg of fentanyl (patch that doesn't stick well :x ) and 5-10 mg of oxycodone for BT (or 10 mg of hydrocodone, but that hasn't done much for me lately). even with taking all of it, i am in a great deal of pain. the kids are so sweet and always pray for me and say such sweet things, are always bringing me water, asking if i need something, telling me not to do something or i'll get hurt, to let them do it (can you imagine such sweet kids?)! i love them dearly and they are great. of course, my 2-year-old son doesn't understand yet, but he is sweet as can be, except when he climbs all over my legs, but he doesn't know! but my kids are my ultimate joy.

i do have RSD, so obviously it was prescribed for the nerve pain associated with that, as well as nerve pain in my back from where all this originated - a botched epidural.

today was a horrible day. the only thing, outside of my kids, that gives me joy is singing and music (oh, and reading). i was able to make it to choir rehearsal wednesday and did okay and my director asked if i would be up to a solo, so i said sure - it gave me something to look forward to and be motivated for and feel good about. right before i went in front of the mic this morning the nasty RSD demon decided to drive screwdrivers through my leg that were on fire. :X i couldn't concentrate, but luckily i knew the song. i don't know how i made it through. i was mad at God first because i thought he knew i needed to do that - one of my few joys outside of my kids - and to have that happen then! i was sure i had done poorly. i had to sit down after that and couldn't stop crying i was in so much pain and was so angry. afterwards several people stopped me to tell me how beautiful it sounded and how great i did and how happy they were that i did it. i guess i shouldn't be mad at God - he pulled me through that song alone. i know he did. i could not have sung by myself in that degree of pain. most days, unfortunately, i can't go to church these days - it is just too hard being out so long and the driving is awful. but i made it today and i am happy for that.

anyway, sorry for rambling.
Hi Msswank:wave:

I'm glad that God pulled thru for you and you were able to sing your heart out. :) He does look after us in most ways. And your four kids sounds like angels. Was the epidural from your birth of your last child? That would be a horrible way to get RSD although any reason to get RSD is horrible:rolleyes: . I got mine from a work accident.

What ever you do don't take the neuortin. I nicknanmed it NeRotten. :jester:
My dr. just gave me a sample of Lyrica to try, but told me not to get my hopes u, because her other patients with nerve pain have not had any success with it. I currently am her only RSD patient, but she has treated others with this monster in the past. I tried taking it one day and all I wanted to do was sleep. ZZZZZZZZZzzzzzzzzzzz. Reminded me of NeRotten all over again. I never thought to try taking it at night only as the weaver suggested. I still have alot of burning pain. That might be worth a try, to help at night time. But I would hate to wake up all groggy. Weaver does this happen? My dad called me this week, and his wife who has had alot of pain from a boat accident, is on Lyrica and percocets only and he says all she does is sleep, and she has put on 50 pounds since being on this drug for 4 months. I could use the weight, but I 'd hate to have to go buy new clothes.:eek:

I'm sorry the patch isn't helping you. Have you discussed this with your dr.? I know it doesn't help to go in and ask for drugs, but I took in a book on RSD to my dr., and highlighted the meds in it, It recommended extended release morphine for relieving the pain, with oxycodone for breaththru pain. She started me out at 10 mg. of MsCotin 3 times a day and now I'm up to 60 mg. 3 times a day. It also suggested making a contract with your dr. so that you don't abuse your pain medication. Alos with small children, I would advise keeping your meds in a safe. I bought one because my teenage daughter at the time, broke into my room and stole half my meds and traded them for buds. :eek: A safe ended that habit real quick, but you'd hate for your kids to accidently take one. But at least I now have somewhat of a life in stead of laying in bed all day racked with so much pain, I couldn't even get up to eat. Food even lost it's taste. I dropped down to 98 pounds, I was in sooooo much pain, I couldn't even drive. So before you get to that point, maybe try this Approach. I hope this helps and good luck. Aloha Skooze:)
Dear Skooze and Mss,

I have not been diagnosed with RSD, but my pain management doctor suggested I might have something similar called something like Central Pain Nerve Disorder... can't remember exact wording.

It is similar to RSD in that it happens when chronic pain isn't treated for a long period of time. In my case it was about 2 years. Doctors never gave me enough pain meds to lower the pain caused by first a bone spur and tear in my shoulder, then a surgery after 2 years to fix it. My high pain levels continued and I even had second shoulder surgery in an attempt to fix some nerve impingement... I wasn't given proper pain management and my current pain doctor said my central nervous system may be stuck in the "on" position and that my body is still reacting to pain stimulus because it's all my body knew for over 2 years.

He has suggested Stellar Ganglion Nerve Blocks to "turn off" my central nervous sytem slowly. It is also a diagnostic. He wants to do 5 or 6 injections through my neck and into my central nerves arouind C5-6. Sounds scary to me...

Right now, my pain is being managed pretty well with methadone and I'm hoping this is a less painful way of turning off my pain receptors. Maybe I can avoid the injections.

Skooze, I do sleep alot also and I think its partly my meth. I take the 50mg of Lyrica at night when my pain levels get high during the day. But take it a couple hours before going to bed. That might prevent the sleepiness in the morning. I can sleep as late as I want so, fortunately, it isnt a problem for me in the morning.

My husband is very undrestanding and since I can sleep as much as I want during the day, he really doesnt see me at my worst. On the weekends, he understands if I don't have the energy to do much, but I still feel my life has been "sucked dry" by the pain I've endured over the past 3 years. Too bad it had to take over 2 years before I found a doctor to treat it properly and it might be too late to reduce it to a desent level.

I know I will need pain meds the rest of my life. Once you have to take narcotics for pain, there is no going back to Excedrin and Tylenol for pain thats for sure... If I can get my pain manageable to Vicodin level I will be thrilled. Although, to tell you the truth, the narcotics I have tried (Oxycontin and Methadone) have been gentler on my system (other than sleepiness) than Vicodin which often caused me stomach pain.

Skooze, try using small doses of Lyrica at night. It does help my burning pain, which fortunately I don't often get until my pain levels are high for long periods of time. I have read where some people can just use Lyrica on an as needed basis for burning pain. You migh want to try that...

Good luck to both of you. Having something to look forward to is a good thing to have in your life Mss. My pain has already taken most of the things I had going on in my life... all my social activities, most of my friends, many of the hobbies I had and even though I love spending time with my grandson, he wears me out quickly and holding him because of a bummed shoulder is difficult. I think having young children gives you more meaning to fight your pain and continue to look for relief. I pray both of you find some degree of pain relief so your life doesnt become like mine h as...

hang in there and keep looking... Have eitherof you tried the stellar ganglion blocks? I hear they help subside the pain a bit and they might be in my future also... If either of you have tried them, let me know how they helped you.

Barb
thanks for the suggestions.

yes, the epidural was for the birth of my last child. he poked me 4-5 times trying to jab the catheter in and it was awful. also, he put way too much lidocaine in, which supposedly can damage nerves, too. he tore my dural sac surrounding my spinal cord, ripped through some nerves, and ripped through a nerve root sac and damaged those nerve endings. i could feel everything, too, since he was in the wrong place and didn't put the lidocaine where it should be. i swear everything in my vision just kidn of broke up in these white lights kind of like star bursts - i guess that is where cartoons have people see stars? lol i had pain one time that made me black out, but this was worse and it was the strangest thing. i just can't describe it. anyway, it has been a long road of falling fast down a mountain rather than a hill or so it seems. i went from it affecting me from the site of the epidural punctures down to my buttocks and then it travelled to my hip, down to my leg, and now my foot.

actually, before i had all the weird RSD stuff, i had extremely numbness down my leg and had a really bad EMG/NCV. my nerves were doing (or in some cases not doing) all kinds of weird stuff. it was when my nerve endings started trying to heal that all the even weirder stuff happened. i could live with having a numb leg, but this? :(
you are so sweet, barb, and thank you so much! remember, though, to never compare your situation negatively against another's, because pain is pain and it is miserable all the same. don't feel bad for feeling overwhelmed, as i am sure at that moment you do feel overwhelmed regardless of the circumstances. just the pain of this nasty demon is overwhelming!

yes, i have seen PM doctors. i had two at one point, because the doc doing the procedures would only prescribe norco (that is all he will prescribe any of his patients), which was not enough for me. i needed something stronger. what is stupid is that my spinal surgeon started me out on percocet, so how could i go down to norco? i tried it for a while, but was miserable all the time. even with the max dose and timing, i would still usually be at an 8 or more often. i asked my physiatrist once what the goal of pain management was and told him how i was feeling. he was like - that is how you feel with medication? he thought that is how i felt without it. so, he switched me to duragesic patch 25 mcg with norco for BT pain. he told me to find a doctor (he didn't do long-term pain management, just physical medicine) that would do the medication management, but he would handle it until i found one. i found out my internist did pain management (medication-wise) and he started helping me figure out what i needed. i ended up on 75 mcg duragesic with 5-10 mg of oxycodone for BT pain every 4-6 hours as needed (pure oxycodone without tylenol because it is long-term and didn't want to mess with my liver). the past two weeks i have been maxed out on the oxy for BT. it has been bad. they are considering upping my duragesic to 100 mcg, but i am resistant to that, as i think i am just having a bad couple of weeks due to weather and such. i am also on soma four times a day. i was given zanaflex yesterday, but didn't like it at all, but maybe you need it for a while. anyways, i ended up taking a soma. i was miserable.

i am getting ready to start with a brand new PM doc that does procedures and pain medication management. my PM med doctor/internist closed his practice and my physiatrist said this other doc handles RSD better and can do the procedures and the meds and prevent the need for me to go to two separate doctors. we'll see. pray he does the job and is nice and listens and handles me well and gives what i need and we develop a good relationship. i am nervous about the switch.

oh, i am having a sympathetic block on friday - my third. we'll see how it works. the first didn't do anything, the second lasted 5 days at most, so we'll see what this does.

and i'm here for you, too. thanks for your support.
Wow Ladies, looks like we got quite the thread going! Did you check out the replies and the readings??? Mind boggleing.

Barb, I tried the Lyrica last night at bedtime. Maybe cause it was halloween and I ate too much candy, lol. I could not wake up to save my soul. I felt so drugged out all day. At 9am I kept nodding off, and this was my day to run the shop. No amount of coffee could keep me alert. I didn't notice any burning pain though, but I'm wondering if the tradeoff is worth it. It's 6 PM now, and I can't stop yawning. :rolleyes: I'm not sure if I'm going to continue this craziness.:dizzy: I never tried oxycotin, but it's cousin MsCotin, which is not as bad, so they say. That's what got me into the living again. I've never tried methadone, but I'm happy with the mscotin. People who see me now, say they were so worried about me before(the vicoden days), that they said I didn't look good, and how much better I look now. I guess when you are so racked with pain you look as bad as you feel. I've had 2 stellegate nerve blocks, but it was 2 1/2 years too late. Wc denied them. They offered me no relief, and they hurt so bad. But the sooner you get them, after being dx'd with RSD, the better your chances are. I pray they work for you.

Msswank I know what you mean about the demons coming back with a vegenance. That's what happened to me when I had my blocks, but it was that very day. The 2nd one in 6 hours. I screamed so loud, I know I emabarassed my pm dr. He said that he didn't want to do any more on me. And Robin too, I will say though that I tried ambien, and it had an adverse effect on me. Instead of making me tired, it made me hyper which is hard to do when you are in so much pain. If I wasn't pacing the floor, my mind was racing. It did the same thing to a few others in my support group. Is this the case with you two?? Maybe you should try something else for sleep. I'm on Remeron, and I'm out like a light. I feel with you for the kids, because I was a single mom raising 2 girls with RSD. They really helped me out. I wish you luck with a higher dosage of the patch. The weather here is cooling off too, and I have to wear layers to sleep, or I'm soaking wet. I pray that it's a new month, that everyone has a better tommorrow. Aloha Skooze:)
maybe i typed it funny, but i USED to have bad pain relief, but have had much better lately (except for the past two weeks, but we've had bad weather and i started my period - all of which affect my pain). i am on 75 mcg of fentanyl patches and oxycodone for BT pain (5-10 mg, but i think i could up that dose these past couple of weeks :( ). my doc suggested upping the fentanyl, but i'm not ready to make that commitment. i want to wait until the weather is stable to be sure it isn't weather affecting me so much rather than me needing to up my meds. before the weather changes were out of control here, i was finding 30-50% relief of pain (depending on the time of day really), so i think i was doing pretty well considering. i am at about 50-75% right now, but some days are better, especially when it is nice out, which is why i think it is the weather. it is just so variable. however, i still have a pretty sedentary live. i cannot do laundry, clean, or any of those types of things without getting a lot of out of control pain. only on days when the pain is out of control am i bedridden and usually just part of the day - after i rest a bit i can do more.

who was it that gets sweats? i was curious about that, as i get sweats at night and wonder if it is related. i also sometimes find my face gets real sweaty during the day out of the blue (and sometimes other places, but usually my face).

about the injections today, i was only able to have one. i was supposed to have two procedures today, one for my tailbone pain and one for the sympathetic block. i did the tailbone one, as i am having trouble sitting and since that is about the only thing i can tolerate to do long periods of time, outside of lying down, i needed that! so, i may try to go in next week for the sympathetic block, but it is hard to find childcare for four children (three of whom i homeschool)!

also, for everyone here, do you find you get migraines now more than before you got the RSD? i do and wonder if it is related. what do you take for the migraine, as my pain meds don't help. i have to take esgic plus (i can't take imitrex and things like that, as it affects my heart).

thanks!

oh, and thanks for the prayers and i keep everyone here in my thoughts and prayers, too. just knowing someone else is out there feeling as bad as i do, saddens me. this is not a condition in which you wish you weren't alone. i do wish i was alone sometimes, because knowing i'm not alone in it saddens me that others go through it!

oh, and i do go to the PM board sometimes and a few times to the back board and the spinal cord injury board, as those both apply to me, as well.
Hi Msswanks and Barb!

I haven't been to the pain mgt board, but it sounds like it's worth checking out. It probably would do all of RSD'rs good to see how others cope with pain. Barb I haven't tried methadone, and after all that pattihabs went through, I really don't think I'd want to. Plus if it's harder on your liver, I wonder why that is, my liver can use all the breaks it could get. lol & crossing my fingers.

I get alot of sweats mssw. What i mean by when I wear layers, is a tank top with a sweater, with a jacket if needed. I take off to adjust to the temperature when I go out. AC is really hard on RSD, and here in Hawaii it seems like every store is freezing cold. I too, get really hot in the face from sweating.At night I I have a bed full of pillows, and if one gets wet, I just switch it with another. I constantly get up in the night to use the restroom, and if it's too cold or hot the fans come on. I'm 46, and I havent' had my period since I got RSD, not that I miss it, but according to my bloodwork, I not menapausal yet. I don't even want to hit that stage with RSD:eek: Plus there is enough hormones in my house with 2 teenage girls. How do you homeschool your kids?? :dizzy: I can't wait till mine leave the house to go to school or work. I think that would be a full time job and add stress. Well wishing you a pain free tomorrow. Aloha Skooze:)
thanks so much, barb! luv and prayers to you and skooze, too, from me!

I, too, wish we could chat somewhere! this board is sometimes too restrictive. i cannot believe they don't have PM, but i understand the sensitive nature of medical conditions and especially on sites where we are using opioids and other sensitive drugs that could be abused. i definitely know the logistics of it, so i'll just take what i can get!

about layering, i understand what skooze means now! i thought she was layering to avoid the sweats! lol! i couldn't figure out that one! haha! i need to layer on occasion, too. i actually have these strips on my feet to keep a record of the temp difference in my legs for a few days. currently, my right foot runs 6-8 degrees cooler than my left, which stays at a fairly normal temperature unless it gets cold in the house and i don't have on my fluffies! ;) i love that word! ha! my right leg is the one affected. boy, i think i would love living in hawaii! i've never been, but have been bugging dh about going in the future.

having the sweats with meds makes sense. i was wondering about that for a while. ever since i found these boards i have also frequented the PM board and found it very helpful. sometimes i get a quicker response there than here. i wish this board was more active. no one around me understands and i need someone to "talk" to quite often. at least you and skooze are here fairly regularly to "hear" me out.

can they do surgery for you, barb, for the entrapment, or are they worried about the RSD?

weather affects my RSD, as well as my migraines! i need to look up about Amerge, as my heart is very sensitive to a lot of medicines. i have to be very careful with what i take or even try for that matter.

i wish my hubby would help out more, but he works awful hours, so i don't blame him too much. he is looking for a new job right now hoping that he won't have to work as much. sometimes he'll work 80-100 hours a week! the kids help pick up, which is nice, and we have someone come and clean the house every other week. i wish we could afford her once a week. right now, someone from my church comes and picks up laundry once a week for me. i wish i could have that forever, but i can't put that burden on them. i feel guilty every week she shows up! but she wants to do it for me. still makes me feel strange. i do a little, my underwear and sometimes sheets or towels or if my kids need something right away. i do homeschool, but two days a week they go to a private school that caters to homeschoolers and teaches them things like latin, grammar, math concepts, and such, and they have uniforms for that, so instead of having several sets of uniforms, i wash frequently. the baby goes to preschool twice a week, on the girls home days, so i can focus on schooling them more. they are getting more independent, so i can usually just list what they need to do and let them get at it and if they need help we set aside an hour or two for that later so i can rest if i need to. the private school has a curriculum that i follow, so i don't have to do lesson planning anymore! yea! we switched to this last year and so far love it, for the most part. i don't really like their math or phonics, but oh well. give and take. i hated lesson planning when i did homeschooling all by myself!

what else am i missing? i can't think.

if you think of something, just ask. my mind is blank!

oh, i've had a pretty good pain day today. all i have taken is my muscle relaxer (besides the patch of course) since about midnight! yay!

oh, i just remembered. i also can't stand to be in the car for long, especially driving. because it is my right leg, using that pedal so much really gets to me and i usually have to rest quite a bit after being in a car for a while. sometimes i have had to fly while my family drives (we can't afford to have a family of six fly most of the time). it was nice when the baby could fly free, but now that he is two he has to ride in the car. he is pretty good, though. although, he did get to be a bit of a toot in the plane and that is hard on the passengers! even flying, though, can be hard if they don't let me sit on the aisle with the extra leg space.

anyway, this is a novel again. ttyl!
Hi Mss,

Wow. Your average day just wore me out !!

Maybe you overlooked it cuz it was waaay back and, of course, this is an RSD board. I don't have RSD... at least I don't think I do. I've only had this pain for about 3 and a half years. My pain is severe. More severe than what can be explained by diagnostics. My doctor thinks its something similar to RSD in that he thinks with all my untreated pain levels over the past 3 years has cause my central nervous system to get "out of whack". He compared it to being in the "ON" position and not knowing how to turn off as my brain has been trained for pained (lol I'm a poet and don't even know it).

I think another diagnosis could be CRPD (Complex Regional Pain Disorder). Where a region on your body becomes very sensitive to pain because of bombardment of painful conditions.

My pain started in my neck about 1995... I really think that is where it began. In 2003 I started exercising and using weights. Then my shoulder began to pinch. I was misdiagnosed and mistreated with PT when I actually did have a bone spur and tear which was causing that pain. By the time I had that operation, other pain developed. My scapula started to wing.

Frankly, I think due to dyskinsia (using wrong muscles to compensate), my scapula started to wing and so on and so forth. After 3 years of continued pain, and one surgery under my belt already, I went to a University Hospital for another opinion. Immediately, that doctor told me after 4 EMGs my doctors still hadn't tested all the nerves involved with my pain.

He did another EMG and also gave me a cortisone injection in my brachial plexus. He was first doctor to do that even though I complained REPEATEDLY the worst of my pain was in that area. At this point, all I was using for pain was vicodin, and I only had enough in each script to use 3 or 4 tablets a day. So, you can understand how after 3 years of pain, I wasn't being treated properly for it....

Anyhow, that shot relieved 50% of my pain. I almost dropped to my knees and kissed his feet lol. Of course, it was the lidocaine working on my brachial plexus nerves. It actually helped the pain in my neck and scapula. Nerves are amazing in how they connect everywhere. It was an hour and half drive to OSU and I thought I was gonna die by the time I got there !! This shot allowed me to ride home in relative comfort. Amazzzzing. I thought I was healed ..... not really, but it felt like it.

My EMG he ordered showed brachial plexus entrapment and he then told me he was doing a "new" surgury to release BP entrapment and that the surgery would mimic that shot. I was also having a lot of tingling in my little finger. I elected for the surgery.

Now, this is where I wonder if I took the right path.... About the same time as I saw him I began with Pain Management (took docs 3 years to refer me). I was prescribed Oxycontin. The pain relief was amazing with that also.

My surgery wasn't scheduled for 6 weeks. When I was going for my surgery, my pain levels were being controlled quite nicely and I almost backed off. My only hope with this surgery that it would allow me to stop having to use narcotics. The surgery was VERY hard on me from a physical standpoint. The actual "work" on my shoulder was less invasive than my first where they had to reattach a tendon to my bone. This doc released my pec minor to make more room for my brachial plexus nerves and then he did some kind of nerve desection. It didnt help my pain very much, but what it did help was the tingling in my little finger which was, before that, almost constant.

So, here I am two surgeries later (6 months post-op from second), still with high levels of pain restricted to the right side of my body. Docs can't come up with a very good diagnosis to explain all my pain on right side. They haven't tried very hard in my opinion. A few MRI's which were messed up...
and that is another longass story of things going wrong. I was even injected during an arthrogram and "lost" for almost 2 hours when they were supposed to image within 15 mins of this injection....

Sorry for long post, but this is just a brief. It's a long 3 years of going down the wrong path and doctors, not having an easy diagnosis with me, chose to just "move on" and let me hang with pain. That's why I went to OSU. I exhausted almost every doctor in my area... lol

I believe RSD is much worse than my condition and it seems to have symptoms I don't have, like the swelling and reddness in an area. I don't have any of that. The injections the doc wishes to do will help in diagnosis me further. Right now all they can come up with is Thoracic Nerve Outlet Syndrom, entrapment of brachial plexus, shoulder impingement and the Central Nervous System Pain Disorder (??). I hate not have a better explanation for this pain. To look at me and see my shoulder range, no one would believe I h ave this much pain. Its a deep, stabbing, burning, twisting pain. Like a hot spear has been driven through the right side of my upper chest and comes out by my scapula in back. When its bad, its horrible. Right now its breaking through and my right arm is aching horribley and I must stop typing... it was worth the "chat".

It's hard to get to know each other in these posts. But I enjoy getting to know you guys. There is a
Oh, before I quit. Mss can't you check into having housekeeping for you covered by some kind of social service? With all you have to do, you might find some coverage for that.

Glad to hear you had a good pain day also. Those days of low pain are a joy!

hugs from your buddy,

Barb
Hi Barb and Mss!

Msswank, do you have a nickname? Maybe we could call you Nurse Swank. I read on your other thread, before your baby hit the send key, about your nursing and medical background. I consisder tht a big bonus for all of here, because some of your dx's or things to have people's doctors check for kinda remind me of a House episode. lol. It's like whoa who would of thought that's what's causing this. :D

Anyhow Barb, I remember reading about certain disorders that mimic RSD, and thoracic outlet syndrome was one of them. That's what I was first DX'd with. I also have a shoulder impingement, subacromial Type 1. Barb which one is yours? My dr's couldn't decide which surgery to do first, the neck or the shoulder, and it was like this wicked game of ping pong being bounced back between orthos and neuros and 2nd opinions. In the mean time my condition was getting worse. So I took them to the dept. of labor, and 9 months later when my hearing came up the neck won. I too was being treated with 4 vicodens a day, which wasn't enough to treat my pain:rolleyes: Long story short RSD can mimic many disorders, and not all the signs of it can be present at the same time. I sometimes have swelling, depending how active I am. I definitely have the color changes-red, white, blue, then purple--oWWW:eek: is the worst. Today I was at Macy's getting a makeover, and it was so cold in the store, that when I went to stand up, my left foot was completely numb and I almost fell face forward if someone wouldn't have caught me. The worst pain I still feel is in my shoulder and neck. It feels like someone ripped my arm out of it's socket and put it back in crooked. Like a Barbie doll. Kinda like what your describing. I pray that the doctors at your new hospital can help treat it. Thanks for your clarification on the pain meds & sweating. That makes sense.
And Mss, you silly goose. Layering is dress in layers, so you adjust to your comfort level. Hey I have fluffies too. And flannel pj's. Fabric really matters with RSD doesn't it? I do admire you for home schooling your kids. I guess you keep plenty busy to keep your mind off the pain. Just don't overdue it.

And living on an island is hard in a car. The roads are mostly one lane each way, and if it rains, like it did 2 days ago, I was stuck in my car for 1 hour do to flooding. If there's an accident it can be up to 4 hours before they open the road again! So it hurts me too be in a car too for a long period of time. I think being in one position for too long isn't good for any of us. Especially when you're pain is in your right leg. So far that's the only part that hasn't been affected. Knock on wood. Glad to hear you're both having a low pain day. Must be the full moon. Aloha Skooze:)
well, yesterday and today made up for my good day saturday. must have been the numbing stuff making me feel a bit better.

you know, you don't have to have redness and swelling to have RSD. if you look at the rsd foundation information (can't post addy so google it) they even have an open letter to the American Medical Association fussing at them for binding doctors and giving insurance outlets to deny treatment by making rigid diagnostic criteria that isn't really applicable. there are around eight signs and symptoms, but they don't have to all be present simultaneously for you to have it. some you may never have, some may come and go, etc.

however, that being said, i was thinking, in the back of my head, about thoracic outlet syndrome the other day after reading your post and couldn't think of the term! yes, that can cause severe pain!

i don't have all of the symptoms and some symptoms come and go, but mainly my body temperature in my right leg, especially the foot, is about 6-8 degrees less than the left, i have lost around 1 inch of muscle mass in my right calf so far. i have bone pain, or what feels like it anyways (sometimes i worry if i have bone cancer it is so bad!), muscle pain, skin pain. i have lots of skin sensitivity. it feels prickly when i am touched and occasionally really hurts to be touched. cold makes it really bad - it is excrutiating to feel the cold on my leg. my skin a lot of times looks mottled and my right foot is very pale compared to the left and it is quite frightening. i have never had redness or swelling. breezes can cause discomfort and even pain. weather strongly affects how i feel. i have really bad muscle spasms in my calf and it feels like the muscles are tied in knots. i do have burning pains quite often and sometimes they feel like a hot screwdriver is being jabbed into my muscle down to the bone. i can't walk without a cane most of the time and sometimes even need a wheelchair. very painful. i can feel all of this on top of the fentanyl and BT meds sometimes, so i can't imagine how bad it has gotten without the meds. i was on pain meds before i decompensated and got to this point due to the spinal cord injury and a back surgery, so thankfully i have had some coverage at least. anyways, i wasn't "diagnosed" until i went to a neurologist for a follow-up EMG/NCV when he was holding my leg and said is your leg always this cold? and look how small your leg has become! well that scared the crap out of me (the smallness part, i had gotten used to the cold part and thought it was a nerve problem, but didn't think much of it - i had so many nerve problems because of the spinal cord injury). anyways, he said i think we have something sympathetic going on here and sent me back to my spinal surgeon who sent me out to other doctors, etc. i responded to a sympathetic block, so they said it was sympathetically maintained pain and "likely" RSD. and that is where i am left right now, still getting workup done.

i do know there are some surgeries available for TOC, but from what i understand the success rate isn't overwhelming. maybe that has changed? i am not really sure. sometimes i think surgeries make things worse, though!

i wish you luck and a painfree day, and another day, and another . . .

in any case, i am glad you have a good doctor taking care of you now. sorry for the problems you have had!

oh, and what kind of social service could help me with housecleaning? not sure i understand what to do there.

barb, about the typing issue, i have a friend who had to get voice recognition to type and this helped tremendously. she was able to stay in touch on line that way.
Hi Barb!:wave:

Yes I agree with your other friends that you are in the beginning of some disease, which will dx itself with time. I like the idea of a sitting up or standing MRI to show compression. :cool: I've heard of it too before. My last MRI in 2/2006, showed severe degenerative disc disease from C2- C7 with many bone spurs. How much worse can it get than that:rolleyes: I agree with mss about getting via voice activated typing software. I have it. It'[s hard to set up, anyd time consuming. But at least your hands don't cramp up. Are the lesions you are talking about bone spurs are lesions?? I have pea size bumps on my left and right leg on the outer edge, and anything that touches them sends me to the moon. I wonder if anyone else has these visable signs. Should start a seperate post for that. I agree with you about being grateful for what we do have. I pray that yours doesn't spread. Mine is in my legs now and my jaw. I need some dental work, but I'm too afraid. Funny on my bone scan, it showed the jaw has hyper sensitive.:eek: Sounds very expensive to me, thus I procastinate.
Nurse Swank, :jester: since you responded to your block, your dr. was correct that you have sympathetic maintained pain. I didn't, thus this monster is setting up house where ever it sees fit.:dizzy: Are they planning on giving you more blocks?? Thank you for backing me up about not showing all the signs and symptoms of RSD. That's why this is such a mystery. When were you dx'd? RSD brain. lol! I pray it doesn't spread to your dominate arm. You might then have to change your home school. Maybe that's what makes that right hand hurt?? Just a thought.

Sure is pretty quiet around here lately. I wonder how Ben is doing, and Patty, and Sharon, and Robbin and wow, looks like alot. I pray everyone is doing fine and please drop us a note and let us know. To a better tomorrow. Aloha Skooze:)
Hi guys...

I've never research RSD, but I agree that I have some complex nerve disorder going on in the upper right quadrant of my body... My test results are all vague. Some entrapment... some bone spurs... some narrowing of my foramen (on left tho)... some impingement... yada yada - Nothing is leaping out at the doctors which is what they want.

As long as I can keep my pain managed and my pain doctor doesnt give up on me like my last one did, then I will manage. Perhaps in a couple years my nerve pain will lessen. I have had two surgeries within last year and half and that is hard on one's body. Maybe I am still healing...?

As for house keeping aid, try telling your doctors that you aren't able to do the day-to-day activities you need to do. You might qualify for social security benefits, which might include assistanct such as housekeeping. With disease processes and pain conditions such as many endure, social security disabilty benefits will include such aids. I have often thought of applying for some, but my husband is very helpful and with the two of us, housekeeping isn't so bad. I can't do much and often will overdo just by doing a couple loads of laundry. I hate being so whimpy.

Msss - have you every had your circulation checked? Perhaps its that which is causing the symptoms in your leg. I know loss of circulation can cause lots of problems also.

Its a bummer to have symptoms of this and that. It's then pretty much a guessing game for our doctors. I guess I cant blame them for not findng the right thing right away, but I hate when they just "give up"...

I have only been to my new pain doc 2 times, which isn't many. If I can perhaps control my pain with meds for a few months it will be the same as these shots he talks about. The shots scare me to death since I had such abad reaction to my other cervical injection.

The voice activation is something I might check into oin the future. Right now I can do pretty good for a certain amount of time and just have to cntrol my "yapping" lol

My shoulder pain has flared greatly this past few days. I think I lifted too many heavy items during a housecleaning project over the weekend. I get so angry because it doesnt take much to set me off. Then add the rainy cold weather we often get and WHAMO.... I'm in bed most of the day because just laying still is about the only thing I can do to calm the pain.

I am grateful I have met you guys online. You have given me comfort to know I'm not alone in this type of pain. I'll just keep plugging along with my docs until something rears its head difinitively.

I hope you both find many days of relief ahead.

Barb
[QUOTE=theweaver2]Msss - have you every had your circulation checked? Perhaps its that which is causing the symptoms in your leg. I know loss of circulation can cause lots of problems also.[/QUOTE]

not these kinds of symptoms. i worked for a vascular surgeon for years. believe me - no. but, i did have my cardio doc look me over and he looked at my leg once and said you have RSD. i didn't even say anything to him. the thing is RSD can cause circulation problems. it is because of the way the nervous system is interfering with the everyday, behind-the-scenes things your body tries to do and regulate. it is a nasty, nasty demon.
Hi Ladies:wave:

Thanks for posting Sharon. Isn't it great that the democrats took back what we lost? Now maybe we will see some changes. Funny healthcare wasn't even an issue here. :rolleyes:

Sorry Barb about your shoulder flare up. Yes you must be careful about being superwoman. I about a month ago had to help an old, 76 years old, friend move when the crew he hired, flaked out. Boy did I regret that:eek: Thank God he had a script for vicodens, cause I needed more pain meds than normal. I know what you mean about the damp cold. It poured here last week, and everything flooded. It was horrible, cause I was stuck in my car in a traffic jam for 1 hour. I dared not turning my heater on, because i had icecream in my back seat. I always keep extra jackets and pillows in my car. Never know when you might need them. It was so ***arre that night because I had the most vivid dream where my legs where on fire. From my hips to my calves with my clothes on. The dr's whee trying to peel off the clothing when I woke up drenched in sweat. I wonder what this symbolizes?? I seldom remember my dreams.
I like your idea about a maid paid for. I have 2 teenagers, and neither one will clean to save their life. Maybe I should check into this.
Msswank, thanks for clearing up the home schooling subject. Doesn't sound that bad now that you define it. Plus you do get to spend time with your kids. Your lucky that the RSD hasn't set up house in your arm yet. Your story about your friend and the bone spurs is horrible. I never heard of such a thing. I don't see my neuro till next spring for another repeat MRI. Hey I'd take bone spurs over the cancer that was showing up in my neck. I was almost set up to go in and have a biopsy on my neck. :eek: Then they though I might have breast cancer, and was seeing a dr. for that too. I had 5 bad mamos in one year. I hate mamos. Might as well run me over with a car. Especially with the RSD in the upper left. Those techs think you have to be a pretzle, the way they make you twist to take one of those. Now watch me have a nightmare about taking a shower. No I'm not going there. I have enouugh to worry about. Have a great day and stay warm. Aloha Skooze:)





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