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hi, Dawna here .... I've had rsd in the left shoulder x 1-2 yrs. all of sudden, went to left hand and now right within month or two. Has anyone else had rapid spread and anyway to stop/slow down? I'm a secretary who was making it work w/rsd (barely), cause im stubborn,lol.. but cant do it with neither hand working. doc says epidural no good for me, many meds, and psoriatic arthritis too...... just doing experimrnting with diff meds ..... any advice would be great ....... im trying so hard to be strong about this, but its so awful as yall know.i have 2 stepkids & work & i just cant do it all anymore. husband is helpful thank god, i see some of u saying the people youve lost, i pray every nite he keeps having a reason to stay ..... im 37, too young to feel this damn old.... and most of my family think its in my head, why cant people just TRY to understand this .... think we enjoy it or something. do and of you do therapy or anything? does it help deal with it? I didnt tell my husband but for a split second I has a thougt of just driving the car right off the bridige when i turned by it.. now i cant drive either.... at least my passion is singing which i can still do so theres something to enjoy. god bless all u guys whove had this 5-10 yrs, i admire all of you ...... if anyone has free time & enjoys messaging, i think i could use it ....thanks, dawn |
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Hi Dawna, I am one of those guys whos wife left after I had RSD for 5 years, she acused me of being controling. I guess she was kind of right, I never once told her what she could or couldnt do, I often surprised her with plane tickets to fly to Washington state from Colorado to visit her best friend, she took care of the money we made and I never even looked and always asked if there was any spending money for me..lots of thing like that! But what I did do was say the pain is too bad for me to do that any more, or I having a flare up and dont feel like it! It was the RSD controling me and I guess you could call it the trickle down effect! I just think she was so shallow that she could drown in spilled water on a table! I have had RSD in both arms,shoulders and mid spine for going on 9 years now, it started in my left hand after a carpel tunnal surgury and spread in about 6 months to my whole upper extremities. Im not sure if it could be stopped as I was victimized by the Colorado Workmans comp system. That means that I was called a liar, a drug seeker, a hypocondriac, a wanna be professional patient for 2 1/2 years before I went outside the system and was quickly diagnosed by a local neuroligist. I will never know what the outcome would have been if I had been believed and treated promptly and agressivly at the start. Woulda ,coulda ,shoulda is all moot now! Of course the w/comp carrier had to re open my claim and pay me back for the time they closed my case and I still needed medical treatment and in the end I was not only awarded a total disability settlement for the RSD but also for bad faith! The money wasnt worth it. I think RSD just does what it want and no one can do anything with it other than to cover the pain with blocks n drugs. I can tell you that I had 7 nerve surguries on both arms, # 6 set off RSD and #7 spread it to the other nerve problems already existing...who knows! It dosent matter now, I just trudge thru every day a day at a time by my self. Frank |
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Hi there,,,, sure message me anytime.. I will answer as soon I get that message. From anyone. I am slower than slow rite now. With msn n puter problems. I still not understanding why so many problems getting into msn accounts. gee over a hr this time. Grrrrr,,,,, O well. I did make it. The blocks slowed mine down alot. And is been ten yrs. still on my rite side. Tho with all the stress I am under wondering when is going too start spreading. Stress diet n all work together. [email protected] is instant messaging or [email protected]. I am signed in all the time. Just not always around the puter. forget too put me away if I do leave. I forgetting alot lately. Alot!!!!!!! I am here. tho I try too remember things. Huggzzzzzz |
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Hi Frank Thanks for your letter.im sorry your wife left, how awful, and you seem like a really nice guy...how do you do the day-to-day things, when the hands just dont work? if only they wouldnt get so bad at the same time.....im lucky i guess that i actually knew someone with thid before i got it, so i was pushing the docs to figure this out, alsolucky my own docs not wcomp, althoguh looking back think it did originate at work. ive been able to do pt, and have been kind of fighting it off till now and scared to death.im a fighter & what do i do when cant fight anymore? so glad i found this group with all you great people in it or i think id lose my mind. Dawn |
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thanks annie.. I took down that info to msg .....doing better today (mentally).... when you had the blocks, how'd it go...... was it painful,or help with the pain and how long did it last? let me know when u get a chance...... thanks, hugs, dawn |
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Hi Dawn, It is hard for me to get some things done now that my wife left me to suffer this indignant disease by my self. Fortunatly I have children, the youngest daughter just turned 16 and when mom left dad she stayed behind to be with me. I also have an older daughter that is 26, she loves yard work and is always here mowing the lawn or pulling weeds, helping with the pumkin patch(something I have done for many ,many years) Both of my girls help with house cleaning or any other thing I get behind on. I try to do as much as I can with out over doing it, I do my own laundry and feed myself and my 16 year old. Frank |
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Hi there,,,, Been reading n rereading your posts. Not a problem. Just having some troubles focusing. Got some really badd news dumped on me today. Grrrr,,,,, not any kind of fun,,,, especially when not able too sleep. but am going on. Tired n drained!!!!!! My dear,,,, I have rsd in rite foot,,, n ankle n rite above ankle.. Empidurals or blocks or whatever u want too call them slowed down the rsd for me. For about ten yrs. Just had 8 more done. My case is alot different from most others. Pain,,, well,,, drs are great with me. See,,, I have no feelings from waist down. Yes,,, since moving n having new drs. they are testing too see if feeling is there or not!!!!! Shocked there is non. Seeing me walk into offices is amazing to them. They admit that part. They are great. Making sure that when they do them,,, blocks,,,,, they go in below the pain levels. When something is going wrong in my body pain levels goes up,,,,, all in my buttttt,,,,,,, all pain that I have is in my buttttttttt,,,,, cause of the damage that was done too the sacrum at bottom of the spinal cord. When those levels goes up I have too start searching for what is going on in my body. Is alot different from others around. I know is still pain. Also having MS,,, with the rsd is not any fun,,, cause am I going into rsd flare or MS flare or both at same time. takes a few days or even a week too find outsometimes what n why things are happening in my body!!!!!!!!! Hope that this helps too understand what n why things are different for me. Hoping that it explains that is reason I try too help as much as I can. I do not n cannot always identify with what others do go thru. As always tho I can identify with most things. huggzzz dear one. Annie |
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You probably know by now that one side of your body will mirror the other side that is affected. In my case the left side is always worse than the right, but it still is bad. My md told me that nothing would get better if I didn't stop working. I believe his words were" you can't take a pig out of the pig pen, wash them off, put them back in and expect the pig to stay clean". Less than eloquent, but sure enough he was right. I also found this pig story in the Bible, too. My plan had been work smarter, not harder, and did. My will just wasn't enough, and I am about as stubborn as they come. Being unable to work carries so many self esteem issues, but that may be the easy part. My mds started with an aggressive series of bier and stellate blocks at two to three a week for two months. Hard on the body, but not much choice. My personal experience would encourage you to pursue aggressive blocks, get some physical therapy. My md said to walk and walk to increase blood flow. I did have an epidural for about 5 days, but didn't really help. I was told that only about 20% of people get much relief from these, and most mds opt for other methods. There are many rxs' as you well know, and for some the lyrica or neurontin help. They made me sicker. I pray that you are just going through a flare up that can be quieted. But, it may be that you are in for a rough ride, and you may experience some serious life changes. There are just so few treatments out there, and some of us respond to different ones. You probably know the list of treatments: counseling,exercise, stellate and bier blocks, lyrica or neurontin, pain medications, bio feedback, enjoying your good days to the fullest, don't feel guilty when you have to make adjustments to your life that mean others have to make adjustments to theirs, I think the newest treatment causing some excitement is ketamine infusions, or drips. Most can be done on an outpatient basis and relief of symptoms varies, but what I have read is encouraging. I think that ketamine is the most encouraging new treatment that I have read about. Hopefully I will get a chance to try that. Has your md discussed ketamine with you? Sing your heart out woman and keep your passion growing. You can do this. I know you can. |
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well, it seems like you've got some great kids & im happy for you for that.... its really hitting me that i cant win this battle completely, and i couldnt imagine doing it alone. unfotunately they took me outta work for a few weeks.... sems like med change started flare-up, but its not backing off much.... can use the hands for limited amounts of time now... i think thats the hardest part for me, so used to go-go-go attitude & just kept toughing it out but thtas not working anymore. doc says i need more balance in life, more rest, think hes right....starting to think about stopping working, very scared about all the horrors with trying to get SS benefits .....we honestly are barely making it with me working...well, all works out somehow i guess..... thanks for listening .... Dawn |
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Hi, I also had RSD in my left shoulder after 2 bicep tendon repairs. It did initially spread to all limbs, but first down my left arm and fingers like yours. I had to stop doing dictation for a medical group. I had 1 year of ECT, electro convulsive therapy and now I'm back to my old self. Hope you will get better, and massage does help. Sylvia |
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thanks for your response, it really helped me get a little perspective.... the doc was trying to get me to tak some time off and i have, been out for 2 weeks so far..... still pretty constant with the bilat flare-ups in wrist/hand but it has lessened a little. I spoke with my physical therapist about work and he thinks I could go back in time to work, but not to the 'busy' office i was working in.... not quite sure what i'm gonna do yet, really cant afford not to work, but at least getting a little healing time.... I also have gotten back into doing a little recording (singing) while ive been home & thats really helped with my mood.im gonna talk to the doc about the blocks, I just feel like I wanna try everything i can to at least get some function back.... i like this doc, but i'm thinking i may want to add another doc in, maybe a neuro and discuss these other ideas... thanks again .. Dawn |
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