blackwolf

Dear Mary, yup, I love my muscle relaxer, Soma(brand name, can't remember the generic ) gee what a suprise. hope we all have better days ahead. blackwolf

had my second of seven treatments, still doing pretty good, get some numbing over of the pain i my middle back, neck still trouble, probably will get mri for it. got some new excerises to try, using stretchable bands and stretches. so far no really bad sideffects of the treatments, though i have alot of muscle spasms after the treatments, though not as painful as the constant muscle pain. hoping to not trigger a bout of super sensativity, still a fear of using the electrotherapy, once i a while i get pain that is all over my whole body and i don't want to even wear clothes and even a sheet is painful, standing, laying and sitting are all agony. thank you all for your support through this. blackwolf

i'm like a lizard, when it is cold, i'm frozen, when itis hot, i'm boiling. my normal temp was 98.3, i have dropped as low as 95.6 and been chilled when other as warm, hot when others are cool and everything in between. go figure, hoping to try mestinon, several report some temp control, at least not so many extremes. worth a try. black-chilled today-wolf

i notice i yawn alot when in certain places, mals, ect. where there are lots of triggers and i need to get out and feel stressed. i also notice it if i'm up and about for longer than 1 hour, rarely happens and i have been triing to keep it from happing to often, i feel lightheaded and nauseated when it happens. blackwolf

i know this sounds funny, but i would suggest doing what purplefocus suggested but add one thing. get some cheap cloth on one side, heavier scrubbing other side kitchen pads and use taht to wash with, GENTLY use the scrubbing side on your skin with a higher quatily bath soap, like cetaphil(sp?) even baby wash. hope it helps, blackwolf ps get 2 or 3 baby crib moisture liners and put them underneath you as you wash, no wet bed.

i replied on the other string before seeing this one, i still don't sleep well and am running out of things to try to help me sleep. but i hope that a new doc can help. i'm starting with a internal med doc hopefully by early june and she said to run off info and send it in so she knows what i want to do/try. i'm also tachy, rarely talk about it, i'm on toprol xl 50mgs, going to cut back to 25 mgs, see how it goes tomorrow nite, i take my pill at nite so i'm not so tachy(and palps) at nite while i try to sleep. best of luck to all of us. blackwolf

Gena, don't feel like the one on the odd side of the symptoms, i too, have so much trouble sleeping that i have had to try some of the old tricks that worked, stop working and being tried again. running out of pills that work without nasty drunk feeling in the am. and the palps an tachy, what else to try, i'm on toprol xl now, at 50 mgs, going to 25mgs, to see pros and cons, ssoooo tired of lack of respoonce of cardio doc. hopefully will start with new internal meds that now what POTS is and are willing to try stuff, talked to one on the phone just the other day, she said as soon as she can get me in, full work up, mabey a few days inhospital, just to get a handle on things and start fresh. she even wants me to priint off and send as much info as possible. hope we all start doing beter soon. blackwolf

thanks amy, i'm sure i'm not a surgical candidate, not that i would do it. i just need to be able to keep moving. i still feel pretty good since the treatment i had firday. the pain is starting to come back but it isn't so bad. agian thank you all, blackwolf

i would suggest triing taking a magniesium suppliment and some complete b vitamin. i just found a group of books that have shed alot of light on how to deal with my pain. they are writen by John A. Senneff, call "Numb Toes And Aching Soles", "Numb Toes And Other Woes" and "Nutrients For Neuropathy". they have been helpful in pointing out things i haven't triied yet. chronic pain has been a real challenge. are you in an area that has a pain mgt. clinic? that would be the place to start. best of luck, blackwolf

still in the hole, but making some progress. ahh, tea, earl grey please. cookies, no thank you, i think i'll have some sugar free pudding. the skies have cleared giving way to cool days and cold nights. getting back pain under control, getting electrotherapy 6 treatments to go, if it helps, i might get a tens unit. morgan-i have been tipsy and have fallen twice over the last week, hopefully, no more for either of us. best to everyone, blackwolf

thank you all, i had my first app. today at pt and spent 15 minutes with the electrotherapy and heating pad. IT WAS WONDERFUL!!!!!!! i will have these treatments for 3 days a week over the next two weeks to see if it helps enough. if it does, i'll probably get a tens unit. my therapist said she had to set the unit they use really high just for me to feel the effect, she said as muscles relax it should get better. doc is still deciding on the mri, will wait to see how these treatment go. mary-my pain doc also only uses empi, must be good. thank you all so very much for your help and just being there for me. i have become almost desprate for care and things are finally starting to turn around. i found a support group for people with msa(multiple system atrophy), called the nurse running it and she invited me to come to the meeting. it was nice to talk about alot of the same symptoms and even got pointed toward a new doc that does everything for them, accually it is a group of three docs and i hope to start seeing one of them within a few weeks. again thank you all, blackwolf

i'm heading back to physical therapy for pain mgt., they want to try electrotherapy again. was heplful about 8 years ago after a pinched nerve, would like any relief from the left neck to ribs pain. if it helps they want me to try a TENS unit, anyone have this, did it help in the long term? i will also probably be getting an mri of my middle back, t7-9. doc doesn't like the complete loss of feeling(touch and pressure) and constant pins and needles. one bit of good news, my gp(who i would just prefer to shoot) has now been fired and i will start to see an internal med doc for everything(but the everyday stuff)for that i will just go to after hours clinic. still kinda in the hole, but a little better, just got pleursy again. kids and hubby have that nasty sinus infection, they are all on antibiotics. best to all, blackwolf

pre POTS i was a cert. nursing assist./med aid. i am now concidering going to school to become a phlebotamist(you know the ones who come and poke and prod for blood). i can do it in about 18 months and that is going slow. then i hope to get a part-time job working nites in a hospital setting, busy but not so bad. i asked on of the ladies who usually does my draws at one clinic, she said she graduated with a girl who used walker to get around. she got a basket for her walker and covered it with really neat fabric and ribbons, everyone loved it, nothing to carry. best of luck to you and may we all reach our goals. blackwolf

my mother does my hair, at her house, sh is a liscnesed stylist. i wash it before hand and she does the cutting there. i haven't had a salon cut in years. never could handle the laying back, can't even do it now. i sleep at about a 50-60 degree angle, just to get a good rest. don't perm either, but do some highlighting, no real odor in the color i use. blackwolf

mabey a lesson learned. my mother-in-law wrote a peom before she died. In God's Hands As my baby lays in my arms It all is in God's hands. As my child runs and plays It all is in God's hand. As my child drives away It all is in God's hand. As my child walks away It all is in God's hand. As my child lays me down to rest It is all in God's hand. blackwolf

dear Dawn, went thru that phaze about 3 1/2 years ago, worked it out. i have a son 11 and daughter 7, felt like i had become a lump for the kids to lay on and just someone in the house who is just "watching". still have those days. divorce is such a hard word. have you concidered "seperating" and seeing how all of you do first, before following thru with it. every few months i go and stay at my mother's house for a few days. have you tried talking about this with your husband? have both of you said what is causing the trouble? tried counseling together to work thru it. i have heard of many relationships that have failed to flourish, or have ended, because of this and other chronic illnesses. just a fact, 67% of marriages fail because one member of the family has a chronic illness, a family with 2 chronic illnessess has a near zero chance of suriving. i guess my hubby and i are one of the few lucky ones. between my POTS and his manic depression, we have managed to work thru what ever happens. i hope you find some guidence and make the choices that work best for you and your family. best of luck, blackwolf

Dear Brairrose, muscle spasms are so nasty. i get them where my arms and legs curl up towards my body, lately, i have had them running from the base of my skull(left side) down to my hip. i curl up like a really fat comma(just let the idea of that sink in, it is kinda a funny) OUCH!!! i do regular stretches to help. i am also a huge fan of complex b vitamins, just be careful if you take vitamin e, it can be very dangerous. i have also tried several muscle relaxers, finding Soma, at 350mgs, being the only one that does work without even worse side-effects than the muscle spasms. is there any certain time when you notice these spasms? ie., time of day, what you are doing, sudden changes in diet, or not having eaten? i just came across some books you, and anyone with any type of pain, might want to read. they are writen mainly for people with peripheral neuropathy, but they are so full of info that i checked them out form our library and have hardly put them down. they are titled "Numb Toes and Aching Soles" and "Numb Toes and Other Woes" by John A. Stenneff. a very good read to me, mostly info i already knew, but some new things to try. best of luck, blackwolf

dear ernie, i'm ssoooo sorry anyone has to go thru that kind of tratment, been there myself. please know that i will pray for you. peace, blackwolf

Welcome EM, sorry to see you down here. plenty of room, i have a huge couch, an electric blanket for the chilly nites, assorted teas and coffee, decaf, of course. Merrill should be around here somewhere. if you like, and can handle, i have some leftover choclate chip pudding cookies, yumm, but i can't eat them, i'm in a low sugar zone. nite. blackwolf

Dear Merrill, welcome to the hole, i'm still here but clawing at the sides. please feel free to decorate, just leave me couch and pillows where they are as i have kind of grown used to the place. i'm fighting to get something done about my b-blocker myself, it helps but, just as you are experencing, hinders. weight gain, yep, tired, yep, depressed, yep. doing something about it, yep. seeing a VERY nice endo, running blood work, cardio is changing b-blocker(to one i had before with better results, have to pay for myself, but rather cheap), seeing physiotherapist to see if i can do more to help myself, seeing nice therapist who actually knows what dysautonomia is. i'm dragging, but still moving. black-still in the hole-wolf

i'm very happy everything is going to be ok with jake, and please, please, take care of yourself. black-lurking in the shadows-wolf

Thank you Corina, send her all my prayers and wishes for some answers. blackwolf

As you face these difficult times, I send you all my prayers and sending good, healthly vibes. blackwolf

I don't like celery, how about pickles. just kidding, I have also almost dropped sugar, just down to substitute. feeling better, and I sure know it when I have it, thou I'm weak and still indulge in chocolate. blackwolf

I have been dx'd with "allergy induced" asthma and only use a "rescue" inhaler on those rare occasions that I have any real trouble, mostly the late summer months. I find I get more out of good stretches and deep breathing excersies than any daily meds I took. Chronic shortness of breath(SOB) is something several of us have. I also have chronic chest wall pain, when it is really bad it can also effect your breathing. Like broken ribs, it just hurts so much to take a deep breath, but so improtant to keep those muscles stretched out. A TTT is short for tilt table test. best of luck, blackwolf