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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.
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!
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 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





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