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RSD has totally taken over my life, doing the things I used to could do is now simply out of the question.
Other than the pain I would say the depression is playing a major role in my life. The couch has became my new best friend. My family does not understand what I am going through they tell me to just work through the pain. I started going back to school but I find that I can't write my assignments without my hand flareing up. My stimulator is the only thing that has kept me from going in same but my right hand does still have flare ups. The depression got so bad last semester that I ended up dropping all of my classes.
My family had a cow but they don't know what I am going through. I am 35 years old and have RSD in my hip and in my right upper extremity. I can't go into a store without a basket to help me walk. My dr. percribed me a handicapped sticker but evertime I use it I get dirty looks from everyone like I shouldn't be parked there. My anxiety is out of control. Is there anyone out there who feels this way?? |
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Hi there, I completely understand how you feel, as I am going through that myself. I just lost another job, and coincidentally, just weeks after they found out about my RSD. I too am finding a new home on my couch. The depression is extreme and my family is little to no help - no one really understands and its probably better that they don't. Can you imagine how your family and friends would feel is they knew how the pain really felt? Imagine how the doctors would immediately pay attention to us if they knew what we were really going through? I swear only my dog has the compassion and patience to sit with me through a flare-up, and that is only because he thinks he is going to be pet soon. I have found some relief through this support group that I am not the only one out there who is going through this. I hope every day that I have been misdiagnosed, and pray that I have fewer flare-ups than yesterday. I've been told that people have me in their prayers - you would think that He would've heard them by now. I don't know how much longer I can continue like this. There is one thing that keeps returning to my thoughts: don't we put suffering animals out of their misery? Why don't we do this for humans? I now understand what Dr. Kevorkian was doing by assisting people commit suicide. I also understand why California legalized marijuana - none of my medications are strong enough. Ok, enough babbling. Basically, I'm saying that you're not the only one feeling like this, and hopefully this helps you. We're in this together, and I hope soon there is a cure. Good luck to you - Meri |
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WOWOW,,, sorry my msn is not working completely rite. I am soo sorry that depression is set in. We need all the support that we can get with this. I wish the drs. new more about nerve pain. It is for sure then more would n could be done then if was known about. I know about nerve pain cause I suffered 3 spinal cord injuries that brought me into knowing n suffering RSD... I know it is hard to go thru each day. Sometimes it is second by second to get thru a day. I know this pain is not ease too get thru. Flares really suxx bigggg time. I feel for all of us who are going thru this. Wishing I could do more. Really,,, anything that works.. WE can do .. Sad that it is trial n error for us tho. We have too keep trying. Agree,, marijauna does help in most cases. That is sad part. The pain is stronger than any of our meds. We need more than taking edge off. Agree. Hoping that you have as pain free weekend as is possible. take care. annie |
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I'm so sorry I didn't respond sooner-- I just found your email today, and hope you are still checking in.
I've had RSD for 7 years, after a partial amputation of my hand following bone cancer. It was absolutely intolerable pain at first. Fortunately, I work in the medical field and figured out something was terribly wrong. I self-referred to a pain clinic, where they recognized what was happening.
I then got adequate treatment for about 4 years. I have no problem taking narcotics, along with all of the usual meds for this-- it allows me to continue a high-level academic job (I'm a professor), when otherwise I'd be in bed or dead. I've also had a lot of nerve blocks, with limited success.
I switched pain docs several years ago when my original doc's nurses began to suggest that I was abusing the meds. I was not, and every time they brought it up could prove it, but I found it unacceptable that they made the accusations without evidence. In truth, I think, they were disappointed that I had not been "cured," which was naive, and became frustrated.
My internist helped me find another doc, who has been a Godsend. I have good and bad days, but no days like what you are describing (although i did at first). I follow the medical plan exactly, whether I feel good or bad, because I know I need to maintain a blood level of these meds.
I try to exercise, sleep well, and all the other things-- but it's tough with my job. I just wanted you to know that IT DOESN'T HAVE TO BE THIS BAD, and a good doctor will help you get better pain relief.
If I can do anything to help you, please don't hesitate to email. I'll be checking in here for the next week-- promise.
Take care! |
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All of you have touched a point in my life. It took 6 months and changing a doc, who as soon as he looked at my arm said I had RSDS, and sent me too a specialist. But by then it was too late. It had already moved up into my shoulder, which now I'm told I have Thorasic Outlet Syndrome too. I am also hoping someday there will be a cure. As long as we have eachother it helps me in many ways. Venting, when I get depressed, when I feel alone. Take care all hugs Kim (tenyrsandgoing) |
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| Hello Everyone,I've been depressed. Thought i'd type a letter to the friends that understand.I realize in May will be 2 years since this terrible disease has put me thru HELL, and still going.I have been getting upset upon all the things we can not do these days because of terrible pain.It bothers me also that my famiy will be coming to visit here in March,NONE of my family does not know the beginning of what we go thru each and every day.I am 38<I raised my two girls on my own no help from there father .No one!!I started working at a very young age.Babysitting was my first and General Manager was my last. It bothers me as the fact that I would love to be working, but then I would recieve no Social Sec.,no help with Medicaid, no help with my 1,500.00 worth of meds.And I would suffer in Pain if I did work. But I am Or feel like I am going CRAZY.What are some of the things that help you keep yourself occupied, I would love to go for a walk but it
is COLD here for a while.Summer, Will be great. But I love to socialize.I am so bored,anyone got any ideas? I am starting to get very depressed. Thank You, as always I am praying for the group. May GOD BLESS, Tina
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Hi there Tina my dear......... Well being so limited physically as to what I can do.....Computer and my 4 leg companion are a major part of my daily life. Amazing what we can learn from our 4 leg freinds.. Now have roommates that moved in here with me..... They are all shocked at what she does n does not do... Amazed and shocked both!!!! She is sooo accepting...And they are seeing how well behaved n all that she does do!!!!! Computers keeps the mind going n changes that depression. Having roommates now is going too teach me how too socialize again... With all that we deal with,,,, n no understanding forth coming,,,,, we really do allow ourselves to isolate n go into a deep hard hard shell.... Being so angry at having something that noone can begin too understand!!!!! Having no understanding,, all the pain,, all the isolation,,,, no help,,,,, n coping and the depression..... We have too admit it all puts anger deep into us..... And who do we direct the anger at????? Certainly is a nonending circle that has answers that are a long long way off that are not going too come ease!!!!!!!!!!! Some of them may not come at all. Answers we all are searching for them..... hugggzzzz dear ones!!!!! annie |
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To Classic Lady Bug,
I too have a perfect body mold in my couch, I have RSD going on 8 years, the first 6 of that I went thru a bunch of different mental barrier's.
I had a wonderful counsoler who was great at helping me into a new lifestyle...as we both know the old way of life has to change exactly like it was...but you can get pretty close. My counsoler had me write down all of the things I couldnt do any more, then, she had me write down thinks I can still do and new things I have learned to do. When I have a good day, I take full advantage of it, when I have a bad day I rest in that body mold in my couch and find a good movie or program. I have a handicapped license plate, I need it sometimes when I cannot feel of control my legs...I dont give a dam who dosent like it...just shows their ignorance....besides, those parking places are wide and no one door dents my car any more! There is a positive for every situation. I couldnt go back to school either but I can volenteer at a retirement home somedays. Im sure your doctor has told you that stress,anger and anxiety all 3 cause higher pain levels. Learn to control these feelings or they will control you, if you cant do it by your self...get some help, I did!
Most of all...I feel your pain and everything else you feel so "I understand" almost everyone here does.
Franknberrie |
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| | From:  -Lølá- | Sent: 2/11/2008 7:37 PM |
if you do not qualify for social security you might still qualify for SSI |
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| | | From: -Lølá- | Sent: 2/11/2008 7:41 PM |
The salvation army has one of the best outreach programs .. see what may help u dont have to be a member or the largest church in yur area can help at times to |
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Yes Classic Lady Bug, I know exactly what your talking about. One time I go to Walmart. I put my crutches in the basket and used the cart for a walker. The next time we went. I didn't make it 50 ft pushin that cart. My guy had to go get me a wheel chair. I get so down with the way this RSD makes me feel that I find I will not look into people's eye's. Just don't want to see their disgust. I don't have a handicap sign. I've been lucky enough to be driven or to get a spot, just one more spot further. But just like you. I feel that people look down on me. Then my attitude kicks in and I get fuming mad. Who are they to be looking down at me. Who are they for me to be feeling that I can't look them square in the eye's and smile. Sometimes smiling at them make them look away. And then I'm the winner. I also have RSD in my left hip area. My lower back and tail bone area and now I fear my left wrist as well. And my right hip is so bothered from laying on it all the time that it's sore too. But it's the only way I can achieve laying down. It's hard for other's to understand dear Lady Bug. It's like. If your not bleeding. They can't see it or find it. All you can do is your best. I would think that that would be good enough for anyone to understand. As for me. Some day's. My best is achieving getting out of bed. Perhaps I will see you in the new chat room. Tami62 has done a great job on the room and even got a toolbar to download so you can be there in one click. I look forward to seeing you there sometime. Fire |
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My dear,,,,,,,, It is hard one that we all have too deal with. We should not in any way ,, take it personal!!!! Having to face and adjust to being disabled,,,, is in no way a adjustment that anyone wants to deal with!!!!!! Seeing how n what we deal with is all our problem!!!!!! As it is disabiling our bodys not our minds ability!!! People see me cannot see the scars on my body,,, And see that I am very stiff..... Nothing really wrong with me... Not at all,,,, but that does change what I can or cannot do!!!!!!! Not by long shot... Seeing peoples acceptance or disgust is a hurt that I do or do not accept. When people can n do smile back or look away in disgust,,, LORD do not let them have too deal with this..... As LORD you know that person is really judgemental!!!!!!!! Judging one can make that come around four times stronger!!!! I do not that coming on me. So please know it is not any of us who wants to deal with.. As my scarring from the accident are all hidden by my clothing... People see that I walk very stiffly,,,,, and with a different type of gait than what most people COULD use. But people say that all the scarring n lengths looks like a train station!!!!!! See,,, one of my scars goes from the belly button all way around to the spine!!!! that is just one scar. I heard that there are six scars on my back. So please know that the simplest of things is still adjustment that we adjust too...... Not fun!!!!!!! Huggzzzz!!!!!!!!! Annie |
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Hi, By Federal law people with RSD automatically can receive SSI/SDI benefits. I've had RSD for about 7 years, and it took 2 years to get benefits, but I also got back payments, and a lot of cash. Please check into this. I'm positive it will work for you. I too spend many days in bed and couching it. It helps to elevate my legs with a heating pad and Lidoderm patches. I also take several pain meds. Sympathetic and empathetic, Sylvia |
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Sylvia, OMG is there a website or something supporting this?? I am sooooooo frustrated I have filed for ssd like 3 times now this last time i was to late to submit the final form for my appeal i was trying to find an attorney to take my case it was all very frustrating and as in the past when i filed i just gave up. My hubby makes ok money and we get by but that extra income would be awesome i worked part time til about 2 years ago i own a DJ/Karaoke business and between the pain and the loud noise i just couldnt do it anymore plus my voice was just blown from the rsd im sure. Like you i have problems with my legs swelling mainly my feet and ankles its painful and i use the Lidoderm patches too i really like them i cut them in little squares and put them everywhere lmao hubby makes fun of me some days with them. I have had this dreaded pain for 14 years now, however i did have a remission period a few years back that lasted about 15 months that was awesome. The social securiy thing i dont understand because i have alot of medical documentation as to my disibilities with the RSD and now the Fibromalgiya. Originally this was a workers comp claim when i was first injured and there is court documentation where they put a disibility impairment rating on me, Oh well go figure I guess i will pick my pen back up again and get back to filing a new claim and not stop fighting this time. After meeting with 4 attorneys i finally found one that will take my case thank goodness. Thanks for letting me vent and i wish all pain-less days and good sleep. stace |
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HI there my dear.... This time do not give up. All that documention from the onset of injury....... could have given yah alot of cash....... Attorney can do that now for you... Social Security also provides one for free...... To fight for you in most states.. Will not say for all,,,, Not sure!!!!! But what ever get those appeals back in....... Why ss does that too anyone is hard telling.. but one lady that I did know fought for 20 yrs not giving up..... WOWOWOW all that back pay come in to her....... ALl of it... So please do not give up... Will come... Rsd is becoming recognized as a disabilating disease!!!!! Glad that you are posting n part of family here.... Huggzzzzzz Annie |
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