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Topic : Living with Chronic Pain

Number of Replies: 7290
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Created on : Thursday, July 07, 2005, 09:06:20 am
Author : dataimport
Do you or someone you love suffer from chronic pain? Share support with others here.

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September 10, 2005, 5:52 am CDT

Hi Nekocats

Quote From: nekocats2

Hello 

I am new to this site. I normally post on the depression board which is a wonderful support system for me.  I am here to try and get some ideas from others who suffer from the never ending pain on the 24/7 basis.  Here is a bit about me.  Hope I don't bore you all. 

  

I have had two cervical spinal fusions.  The first in 1999 with a fusion using part of my hip bone.  The second in 2003 using a titanium cage.  These are C4/5 & C5/7.  I suffer from neuropathic pain and when a low pressure system comes in, I know. 

  

I have stenosis and budging disks in L4/5 & S1.  The pain never stops.  I have been on so many medications and not much works.  I was on high doses of Neurontin which almost killed me.  I now take oxycodone, xanex, and effexor.  Sad thing is, if I run out of the oxycodone, it will kill me.  I am physically addicted due to the length of time I have been on it.   

  

I have been unable to work since 11/01 when I injured by lower back again.  I feel like a total failure in life.  I was once very productive.  I was even a volunteer firefighter/EMT and was studying to be a Paramedic.  That is now all gone.   

  

Thanks for listening.  Any suggestions?  I hate life right now.  Just hate it.  I feel worthless and feel like a looser.  The pain causes depression as I am sure many can relate. 

  

Thanks again. 

Nekocats 

Hi there;  I too suffer daily with chronic pain caused by Rheumatoid Arthritis.  When I read messages like yours, it almost makes me feel like I'm blessed that I don't have to deal with that kind of constant pain.  Arthritis pain isn't anything to minimize at all but I just felt lucky to be me when I read your history.   I am on Enbrel and methotrexate injections and plaquenil for my arthritis.  Without these combinations, I would be confined to bed (as I have been in the past) in constant, chronic, excrutiating pain.  I was unable to even sit up or hold a drink of water because the pain was so bad.  Thankfully I have a wonderful Rheumatologist who got me on the right combo of medications.  I only hope the effects of them last for a very long time or I'll be right back where I started.  The cost of these medications runs at about 3 thousand every eight weeks and I am lucky to live in Canada with a good health benefit (I have to pay only 1 hundred a month for it) and my coverage pays 100% of my drugs.   

I have a brother who was an EMT and is now a Paramedic and has his own ambulance transfer service. He was addicted to crack cocaine for a long time but he worked very hard to get where he is now so I know how hard that you worked and it is very unfortunate that you are unable to continue.  I couldn't help but think that maybe you should try getting another specialist doctor to see if there isn't another combination of drugs and some therapy that would get you a better quality of life.  It would be worth a try but never, never say you feel worthless and are a loser.  I would recommend reading the book 'The Purpose Driven Life' by Rick Warren.  It is the most powerful book I have ever read.  There is a purpose for your life and I think this book will surely help you find the answers.  It made #1 book on the New York Best sellers list and I guarantee it will impact your life too.  Good luck to you and may God Bless you and give you the strength to cope with your pain.  Never give up.  Take care.  

 
September 10, 2005, 6:15 am CDT

From LadiDi

Quote From: pates25414

I am 55 and just (2 months ago) diagnosed with Scoriatic Arthritis.  I get some of the same responses.  My husband just can't believe that I am in pain almost constantly or that the medications make me sick/dizzy.  The RA doctor seems to think I've had this for years and that it was just misdiagnosed.  In the meantime, I'm dealing with severe depression.  I'll send you my prayers and thanks for writing about constant pain.

 

Sandy

Hi Sandy; Thank you for your prayers and as for thanks for writing about constant pain;...well, writing about it helps us get out our frustrations (at least it does for me).  I am recommending a wonderful book to read (if you haven't already) and it is "The Purpose Driven Life" by Rick Warren.  Wonderful book and it impacted my life in a BIG way.  If you have read it I would appreciate your comments on it.  As for family (namely husband) not understanding your pain, I would suggest you getting information from the internet about your disease, printing off the information and suggesting he read it to see how you and others live with this kind of pain.  I think that educating people is the most profound way of getting their attention and minimizing the ignorance.  Take care and God Bless you.  LadiDi
 
September 10, 2005, 6:31 am CDT

Living with Chronic Pain

Quote From: profderien

i am glad someone spoke up for methadone as an effective pain management tool.  all too often, people assume that it is only used for heroin addicts in their effort to go clean.  

   

the methadone used for medically supervised pain management is the exact same formula -- but usually is prescribed in pill form.  it is very effective and very inexpensive.  more and more pain management doctors are prescribing it fot both of those reasons.  extended release forms of drugs, like oxycontin, are being widely abused.  methadone, because of its long half-life, stays in your system just as long but lacks the abuse potential.  

   

i have been on the same dose for about two years -- for help with avascular necrosis [hips, shoulders, knees, ankles and RSD/CRPS.  to be honest, it doesn't help much with the bone pain but it is fairly effective against the RSD/CRPS pain... and that's saying something positive!  

   

everyone is so different when it comes to pain and how to relieve it -- as hard as it is to believe, pain is a subjective reaction.  [and tonight, for instance, i find that exceptionally difficult to believe! if you have chronic pain, a pain specialist is really necessary.  

   

although i must say i am ticked off by my new one -- still wet behind the ears.  i have recently suffered new fractures in my left foot and knee.  he doesn't get the concept of acute pain on chronic pain.  my internist just rolled his eyes... and i didn't find that especially helpful either!  

   

so a word of advice to all those with chronic pain -- ASK  now how acute pain is handled, should that occur! 

  

music is a wonderful help for me [just to talk about something besides drugs... as well as critters.  any work that i can undertake is helpful...  but god save me from daytime t.v. -- dr. phil's show excepted. 

  

be well, everyone, g'night! 

 i haven't been on methadone, but i've been on about everything else. I'll try it. I've been on oxycontin (was for 2 yrs.) and had the doctor change me to something different. I've been using Fentanyl Patches now for 2 yrs. with oxycodone for breakthrough pain. Not bad, but I still hurt so bad I can't walk at time's. I've had 2 major back surgeries since 2002 and I'm only 37. First op doctor made a mistake and damaged the nerve's to my left leg permanently. I have several rod's and bolt's in my back.  The last op they had to use cadaver bone for the bone graph's cause I wasn't makin' enough bone, the first time, for the fusion to properly take place. It's just day to day pain now. Thank's for the tip though. I'll give it a try. Maybe it can help somewhat.
 
September 12, 2005, 9:09 am CDT

Living with Chronic Pain

Hi everyone, 

  

First time user and have been reading your notes.  How about Fibermyalgia?  Have no arthritis but this is getting really bad.  On top of that pain the meds are killing my stomach.  My grandchildren don't understand why Nana can't play like she use too!  Does anyone have any suggestions?  My doctor says it's only going to get worse and has advised me to go on disability.  Please Help!! 

 
September 13, 2005, 3:50 am CDT

CRPS

Quote From: jacqulynn

Hi. My name is Jackie Valdemar. At the time, I was 19 years old and had just bought my first car. I had a boyfriend who loved me and lots of great friends. I had a great job that I was really good at and paid well, and I had pride, dignity, confidence and humility. I guess you could say that I was just a normal girl, but there was nothing normal about how my life was about to drastically change forever!  

I had been waitressing and hostessing at a nice restaurant for 6 months where on March 12, 2002, I had a minor injury. The doctor said I had hundreds of tiny shards of glass in the palm of my right hand (the hand that I write with). He said not to worry, that everything would be fine. But it wasn’t! Suddenly 1 week later, I had excruciating pain and extreme swelling and discoloration throughout my hand and wrist all the way up to my right elbow. I could barely even move my wrist or fingers without crying out in pain!  

When Workers Compensation Board got involved, right from the start they didn’t believe that all the pain and swelling was from the accident at work. So, I was passed from doctor to doctor to doctor, as each one would give up on me – not knowing what else to do. Most of them resorted to pumping me full of drugs and at one point, I was taking some medications because of the side effects of other medications. Honestly, I have probably taken more medications than about 20 people would take in their entire lifetime (and it’s only been about 29 months so far)!  

So finally, the diagnosis – for awhile it was Carpel Tunnel Syndrome, then it was Severe Tendonitis, then Reflex Sympathetic Dystrophy (RSD), then Fibromyalgia, hours later it was RSD with secondary Fibromyalgia, THEN it was all in my head and the latest diagnosis is Complex Regional Pain Syndrome (CRPS), which is the exact same thing as RSD. You know, my doctors spent so many months trying to figure out what was wrong with me, what it was called. And it got to a point where I really didn’t give a flying crap (sorry) what my disease is called, all I want is for someone to make it go away!!!  

(I wanted to give you a bit of info on CRPS so that you had some sort of idea of what I’m dealing with.)  

Complex Regional Pain Syndrome is a progressive disease of the Sympathetic Nervous System, an abnormal sympathetic reflex. It can follow a minor trauma (like a fall or sprain), a break or fracture, a sharp force injury (like a knife or bullet wound), heart problems, infections, surgery, spinal injuries or disorders or other major traumas. CRPS is a devastating, disabling disease that has completely robbed me of my ability to function because of extreme, severe pain that is constant and never-ending. There has not been even one tiny moment in the last 29 months when I have not been in terribly horrible pain! If it is caught, and most importantly correctly treated early, then most CRPS patients respond well to treatment. But in my case (and like so many others) it wasn’t, so I was left to try and cope with horrendous pain, impaired motor functions, body tremors, dystonia, full body muscle spasms, sympathetic nervous system dysfunction, extreme swelling, skin color changes, skin rashes, fevers, increased inner body temperature, sores, sensory changes, hypersensitivity, short-term memory problems, emotional distress, frequent migraines, daily headaches, insomnia and bone loss. So sadly, (believe it or not), ALL of these symptoms have become a part of my daily life! CRPS also causes depression, NOT the other way around like most doctors like to think!!!  

Ultimately, severe and disabling pain is the hallmark of this frustrating disease. Although countless doctors in Canada disagree, another hallmark of this disease is its ability to spread from one affected area, to another area, or in some cases, like mine, from one affected area through the entire body. As a result, few patients, like me, have total body CRPS and are severely incapacitated, in fact, the Mayo clinic has found that only 4% of patients get total body CRPS. I can’t walk, I can’t wheel myself in my wheelchair (because my right hand doesn’t work – I can’t move my fingers or wrist), so if no one is home and I have to go to the bathroom, then I have to crawl. I have to crawl on my stomach from the TV room to the bathroom and back. So, when it comes to be this late in the course of this disease, treatments are rarely effective and people like me are forced to cope with intense chronic pain!  

One thing that really bothers me is the fact that there is a huge lack of knowledge about CRPS, even among medical specialists. In fact, CRPS isn’t even taught in Canadian medical schools, so some doctors really believe that CRPS does not even exist! I believe it is only through the right education that we can stop improper diagnosis and treatments. I desperately need to make the public aware of this unbearably painful and crippling disease because it affects millions and millions of people throughout the entire world! It’s actually most common in people 40 to 60 years old, but recently doctors have found that it is now affecting people who are younger and younger (even as young as 3 years old).  

I guess the most devastating aspect of this illness is how it affects every single part of my life. At the very beginning of this letter, I mentioned some important things that I had before my accident, and now because of this stupid disease, ALL those things are gone and the scary thing is, is that I may never get those things back again! The really frustrating part is that physicians, other health care professionals, Workers Compensation Board workers, employers and especially friends, lovers and family members simply don’t understand just how much I am really suffering. They just don’t understand, they don’t get that I am in pain ALL day, EVERY SINGLE day.  

Not only is my disease extremely difficult to live and try to cope with every day, but I also have to deal with the many side effects of all of the medications I need to take (like weight gain – I was 115 pounds before my injury, and now I’m 257 pounds, also there’s dizziness, extreme nausea, major constipation, blurred vision, loss of appetite, hallucinations, completely passing out, even more insomnia and dopiness). As a result of all this crap (sorry again), I live, pretty much, without hope, in depression, anxiety, anger and fear! Pain, depression, being reduced to living in a wheelchair, not being able to dress or bathe myself and basically not being able to do anything a normal 22 year old should be able to do for herself results in even more anger, fear and anxiety. Complex Regional Pain Syndrome may not be physically fatal (like cancer or MS) and to you this might sound weird, but CRPS is definitely emotionally, mentally and spiritually deadly!  

Anyways there are 2 very important reasons why I wrote you this letter. First, I truly believe that we really need to educate our doctors (especially in Canada) about Complex Regional Pain Syndrome (most importantly, we need our doctors to be more open-minded and willing to learn), and I think it starts with making the public aware, letting everyone know about CRPS (knowledge is power, right!). This illness, that is just as debilitating and (in different ways) devastating as cancer, is barely even known about throughout almost all Canadians, let alone Canadian medical professionals! As a result, so many CRPS patients are misdiagnosed and mistreated for years and years! You know, the year is 2004 and this disease was around throughout both World Wars and STILL hardly anyone even knows this illness exists, let alone what it’s about, except for maybe, at the most, a handful of doctors. But the point is that there is no cure for CRPS! And if you think about it, most doctors don’t even know about Complex Regional Pain Syndrome, so they’re not even beginning to look for a cure! Maybe it’s because CRPS isn’t fatal like cancer, but honestly, from my heart, in May 2004 my grandmother died from cancer (colon cancer) and I wish to God that it could have been me!!! For the last year I have been praying to God that I had cancer, because if I had cancer then that would mean that I would get to die. It means that there would be an END, an end to all of my suffering and all my pain. When the pain is at its worst (and that’s pretty much all of the time, in fact the MaGill University’s pain index states that CRPS is the highest form of pain there is) I beg God to take me up to heaven. I tell Him that I can’t do it anymore, that the pain is just too much and I’m so tired of fighting, please take me up to heaven with You! Now you’re probably thinking I’m some suicidal lunatic, but I’m not and (unfortunately) I love my mother way too much to do that sort of thing. Studies have shown that 50% of people with CRPS attempt suicide.  

The other reason I wrote you this letter is because there actually is a tiny ray of hope for me. His name is Dr. Hooshmand and he has a clinic in Florida devoted to treating people with Complex Regional Pain Syndrome. And the amazing thing is that he is getting amazing results! He has not found a cure, but he is able to (in a great number of cases) reduce pain and increase mobility. Basically he’s able to give people their lives back! Also, Dr. Hooshmand has even been able to put some of his patients into REMISSION where a patient’s pain is somewhere in between tolerable and non-existent! Some patients can stay in remission for years and years, but it would take barely nothing at all (like a sprain or a fall) and then BOOM, it all can be taken away! All the pain, headaches, spasms, hypersensitivity, swelling and insomnia are back and you can barely even move. You’re back in hell again! I don’t know about you, but I would definitely rather spend even just 1 week in remission with tolerable pain and have it all taken away, than being where I am today, in constant pain! Dr. Hooshmand is doing excellent, amazing work with CRPS and it sounds like the doctors in the United States know more about CRPS as well but we still need much more education! We desperately need to educate our Canadian doctors (most of them really don’t have a clue!) and it needs to start happening NOW! Basically, we need HELP! ALL CRPS patients need help. I desperately need help!!!  

The truth is that I really need to get to that clinic! Seriously, I think it’s my only chance at having some sort of normal, happy life! And of course, the only thing stopping me is money. For 1 treatment at Dr. Hooshmand’s clinic, it costs $12,000 US and you’re supposed to go every 6 months (but the price gets lower each time you go), plus the price of the plane rides there and back, and because I can’t take care of myself, my mother would have to come with me, as well, one treatment lasts a week and you can’t stay at the clinic, so my mother and I would need a place to stay during my treatment. It just all seems so overwhelming and impossible and we just don’t have anything anywhere near what that would cost! My mother is a single parent (still supporting her 2 young adults) and was just laid off a couple of months ago and (so far) hasn’t been successful at finding a job yet, so she’s been trying to make sure we have enough money to survive on for the next few months, so finding the kind of money needed for even 1 treatment is definitely IMPOSSIBLE for us! I know I’ve said it 100 times but I really do need your help! I just turned 22 (I’m supposed to have a place of my own, be working, studying for school and hanging out with friends) and now, to make matters worse, I’ve been informed that if we’re (my mom and I) not able to take “proper” care of myself with the help I have now (1 home care worker, for 2 hours, from Monday to Friday) then I will be forced into an institution. And believe me when I tell you this, I’ll die before I go to a place like that! My family, most of all my mother is the reason why I’m still here, why I’m still fighting this thing, why I’m still sane and if they were taken away from me, I really don’t know what I would do or how I would cope!!! Honestly, my mother is my best friend! She has been so strong and so supportive throughout all of this, and even though she knows that I might have CRPS the rest of my life (as bad as it is now), whenever I cry or the pain is really bad or it’s Tuesday, my mother always tells me “We’ll get through this together, we’ll get through this together!“ I desperately need her and my brother in my immediate space for as long as humanly possible so, that clinic in Florida is my only hope! I’m desperate for help! Seriously, I need to find a way to get to that clinic or else 2 things will most likely happen:  

1. I’ll get even worse and have to be put into an institution.  

OR  

2. I’ll spend the rest of my life in immobilizing, excruciating pain, not being able to do anything for myself and praying every day for God to take me to heaven.   

Damn that’s depressing!  

  

Well, I realize this has been an extremely long letter and I wanted you to know just how much I really appreciate you reading this! For someone like you to take the time out of your busy day just to read my letter, it really means a lot to me and I can’t thank you enough! I want to make sure that you know that I wrote this letter because I want people to know what Complex Regional Pain Syndrome is so that hopefully one day even I person is in less pain (or NO pain) because a doctor happened to be watching TV or heard something from a friend and learned something. That would be SO amazing – even if this letter helped only 1 person! That’s why I wrote this letter, so that I might get the chance (the honor) to help others! If there’s anything you could do to help me, I would be forever (and ever and ever...) grateful, and I must say again THANK YOU for taking the time for me and my letter!!  

From: Desperate for help  

Jackie Valdemar  

   

P.S. For more information on Complex Regional Pain Syndrome you can go to www.rsdrx.com  

(This is Dr. Hooshmand’s web site packed with tons of information.)  

   

If you wish to contact me, please feel free to leave a message on my e-mail at:  

jacqulynn@hotmail.com

   

Note from Jackie’s mother:  

I have typed this exactly how it was written. It’s important also to note that Jackie has taught herself how to write with her left hand! The entire note taking from all of the research, the original draft, rough and good copies were all written with her left hand through spasms, swelling, cramping and pain over the past 11 months!   

This letter in and of itself has been over two years in Jackie’s thought process. What precipitated this letter into taking form was the devastating news of my mother being diagnosed with cancer and having four to six months to live. Jackie felt an incredible sense of urgency during this time. We were not able to attend “Grandma’s” funeral due to Jackie’s illness.  

In closing, I can only say that Jackie has so much love and compassion in her heart. She cries when she sees a child or an animal hurting. All of her hopes and dreams are but distant memories! She wanted to become a police officer so she could help people! Now her goal is to somehow help one person, just one, to have less pain! This letter is such an incredible accomplishment for Jackie and I am so very proud of her!!  

 

 

  

 Hi I'm new to this,
i live in the UK, i woke up one morning with pins &needles in my left leg so i got out of bed to put weight on my leg to stop the pins & needles & to my horror my leg gave way & i was in excruciating pain so i went to the hospital nothing was broken so they put a support on it & told me to rest my leg & it would be fine...
a month after that i went to my doctors because i could hardly move & i just wanted to die with all the pain i was in...
i was sent to see different specialists but none of them new what was wrong with me so i had to go into a hospital in Glasgow for tests by this time i was on crutches & hardly moving(a tortoise could move faster) the day i was due to go home a doctor came to see me, he asked me to stand up so i did with the help of my crutches he took one look at me & told me i had complex regional pain syndrome i was shocked for 33 months i didn't have a clue what it was and after seeing all those different specialists for someone just to look at me & tell me that i wasn't going mad & name the thing was totally brilliant...
but sadly on my part i thought it was going to be treated & all go away how wrong was that I've had crps 4 years now & I'm still fighting it to stay mobile... so my thoughts are with you take care x
 
September 13, 2005, 8:47 am CDT

Living with Chronic Pain

Quote From: ladidi100

Hi Martha: Sorry I haven't responded sooner to your reply, but my father has Alzheimers and I had a chance to go and visit and stay for a couple of days recently (he lives 2 hours away).  I stay overnite with him at the Retirement Home so I can see how his condition is progressing.  He also has Chronic obstructive lung disease and I could see how his breathing is during the nite (worsening).   When I see all the old folks with varying degrees of aging, I thank God for the many blessings I have at this time.  My pain pales in comparison to all of the problems I see at the Home. Anyway, I also had to see my Rheumatologist while I was there so I killed 2 birds with one stone so to speak.  My Rheumy didn't comment on whether I should or shouldn't have surgery because of a new concern that we have; I have been very wobbly when walking lately and since being diagnosed with RA, it has been becoming more and more frequently as of late than it did in the beginning. He wants me to put weights on my ankles (5 lbs each ankle) and do leg lifts to see if the muscles can be strengthened and see if that makes any difference.  As you know with arthritis, if we can even walk on any certain day we're lucky so it's no wonder the muscles deteriorate in the legs over time.  I will give this a try for a couple of months and see him again.  As for my feet, they are okay lately, and only hurt more when I try to walk too much or go to far.  I hope you are doing well and thank you for the offer to ask questions or 'just listen' :)    I hope you have a wonderful, healthy grandbaby; isn't it wonderful that God blesses us in many other ways when we are faced with living daily with chronic pain?  It sure helps us get through the rough times.   Glad that you also have a wonderful hubby as this makes all the difference in the world.  Maybe Dr Phil should do a show or a forum on relatives of people living with chronic pain......they are the ones that help us get through.  Take care and do write again just to say you are doing ok and how the new grandbaby is.  God Bless you and yours.

 

 

  Hello Diane,, Nice to hear from you again,,I'm so sorry about your father. Both of my parents have passed. I miss my Dad, I didn't really know him until I was 32 years old. He was a wonderful man. we still don't know whether the baby is a boy or a girl. But it doesn't matter. My daughter wants a little girl this time. She has picked Abigail Rose for a little girl and Jordan Cale for a boy, honoring David's Dad and Uncle and Grandfather as well. Yes we do have blessings that sometimes we don't realize. My children and grandbabies are truly a blessing, Jen recently got a webcam and I got to see little David for a little while on the webcam this past weekend, I couldn't help crying, he's gotten so big and I miss him terribly. He's such a sweet little boy.  I have been checked for RA but they said that it was negative. But you can never tell, sometimes it takes a couple of times for them to pick it up. I'll say a prayer for you and your Dad, that can only help. I hope the weights help, and it just may. It really can't hurt.  My foot is getting worse,, we went to two flea markets this weekend and I'm still hurting and this is the first time this has happened with this foot. It just won't quit this time, so I guess I'll have to get myself to the surgeon, before Billy decides to take matters into his own hands, and resort to threatening me with bodily harm,,HA HA HA!!!!!  I've had to use my crutches when I've gotten out of bed the past 3 mornings, oh well,, just another day, you get up,  feed the cat and the pup, make some breakfast, do some laundry, and straighten up the house and go on. Life goes on,, and so do we,, hope your Dad is feeling a little better, God bless you and your  family,,   Martha 

 
September 14, 2005, 1:22 am CDT

best wishes

 hi, zippie here i would just like to say good luck to proferien for when you have the op i hope all goes well & you have a speedy recovery... my thoughts are with you, take care x

 
September 18, 2005, 4:14 pm CDT

to zippie

Hey zip-I would watch out for that last message, there is no info on the member and it sounds like a sales pitch to me, instead of true support. How tacky. Anyway-hope u are doing well 

gentle hugs-mel 

 
September 19, 2005, 8:17 am CDT

Degenerative Arthritis of the spine

I have been battleing this desease for about 12 years now and have had 3 back surgeries. Last surgery they had to put 4 pins in me to try and hold my 4th lumbar vertebre in place (it was at a 45 degree angle to the left of my spine) and I am in constant pain. Some days it is tolerable and most days I can't even bend over to put on shoes. My husband feels helpless to do anything for me and  I feel so angry at losing my independence.  I am now on disability at the age of 48 and am angry that my life plans have been altered by this illness. My husband just revealed to me that he is jealous that I get to stay home and 'do what I want' while he has to go out in the work force. I told him I would GLADLY trade places with him for about a month and see how 'fun' it is to stay home AND deal with the constant pain! (He and I met on the job so I really could trade places with him and do his job.) Well, today I physically feel OK but mentally feel angry. I guess you can tell by this posting. LOL Thanks for letting me vent. 

Cheryl 

 
September 20, 2005, 4:53 am CDT

ME TOO!!!

Quote From: cpowers57

I have been battleing this desease for about 12 years now and have had 3 back surgeries. Last surgery they had to put 4 pins in me to try and hold my 4th lumbar vertebre in place (it was at a 45 degree angle to the left of my spine) and I am in constant pain. Some days it is tolerable and most days I can't even bend over to put on shoes. My husband feels helpless to do anything for me and  I feel so angry at losing my independence.  I am now on disability at the age of 48 and am angry that my life plans have been altered by this illness. My husband just revealed to me that he is jealous that I get to stay home and 'do what I want' while he has to go out in the work force. I told him I would GLADLY trade places with him for about a month and see how 'fun' it is to stay home AND deal with the constant pain! (He and I met on the job so I really could trade places with him and do his job.) Well, today I physically feel OK but mentally feel angry. I guess you can tell by this posting. LOL Thanks for letting me vent. 

Cheryl 

I completely understand! I have RSD, and havent worked in 6 months. My boyfriend of 6 years told me about a month ago that he's not sure if he can "deal" with this the rest of our lives (I'm 29, he's 31). I'm trying to work it out with him but the fact that he doesnt even TRY to understand my disorder is extremely frustrating. I have asked him to go to Dr appts with me, or to the support group, I even found an email support group for significant others of people with RSD, and he hasnt done anything. I know we are under financial strain, but I have applied for disability, and I try to understand his stress, but sometimes I get absolutely furious at him and wish he would try to understand what's going on with me! Chronic pain is a HUGE blow to anyone's self esteem! Just know we are here for you Cheryl!!! gentle hugs! Mel
 
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