Topic : Living with Chronic Pain

Hi Kristie 

Please go to the following web-site . I beleive that it may help you as well as many of Dr.Phils Readers. Now this is the Best one that I found so far in 4 years. 

http://www.ImmuneSupport.com 

This site will take you from Doctors to Meds to Diability and Lawyers. 

Sorry to hear about your problems, but maybe this will be helpful . Take Care and God Bless You 

Will 

i had total shoulder replacement surgery on monday [due to osteonecrosis/AVN -- and while the surgery will, i think, turn out to be a success over time -- the pain management was a disaster.  my pain management doctor doesn't follow patients during their hospitalizations and so that pretty much put me at the helm.  as much as i like to be bossy, i'd much prefer a doctor making the suggestions!  my home regimen of 20 mg methadone with oxycodone prn wasn't sufficient to cover the post-op pain.  well, d'oh.  "did i think that adding a PCA pump using dilaudid would be enough?"  i didn't know and when it turned out that the pump wasn't enough, it took lots of fine-tuning of the timing of each drug's delivery.  what ended up helping were staggered delivery times. 

if you have chronic pain, with acute pain on top to that,  be sure to come to some sort of understanding prior to going to hospital.  i was very short and tearful when i had some areas at a TEN and others at a SIX... and must have seemed like a wack-job when attempting to keep anyone from touching my CRPS/RSD involved sites. 

the last part of the story -- the night after the surgery i woke to my own yelling.  my left leg was in the air and i was having trouble breathing.  the crps/rsd decided to flare with a vengence in my left leg -- and i was developing some bronchitis.  two nurses were there and, bless their hearts, they were trying so hard.   

maybe i have shielded myself from the memory of how crps/rsd felt the first time around, but it's absolutely unnerving.  it took a lot of convincing for me to believe that the bottom of my left foot wasn't blistered fire. 

i am thinking of trying to get a symp. nerve block early next week but don't know if they can do one with my shoulder being so bad.  they did three blocks on my shoulder -- 2 pre and 1 post -- to no effect.  i wish i knew what would help.   

my guy is more than a little tired of all this.   

insult to injury -- i lost a lot of blood.  the offer was "you can stay an extra day and get a transfusion, or you can go home and be very careful and take iron." my h and h was 8 and 27.  i just feel a tiny bit weak physically -- but enormously weak mentally. 

maybe there's nothing so unusual about that! 

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 

I've had fibromyalgia for 3 years and have just been diagnosed with something more; Connective Tissue Disease (A cross between systemic lupus and Rheumatoid Arthritis).  Do you see a Rheumatologist?  If you can get into a good Rheumatologist, they run specific tests that can determine if you have more than Fibromyalgia, although I know Fibromyalgia is debilitating.  Something I learned the hard way was get your doctor to refer you to a Rheumatologist and DO NOT TELL them you have Fibromyalgia.  This is what I did to get into a Rheumatologist and he ran every test under the sun.  You may already see one, but usually they do not want to deal with Fibromyalgia

I could be wrong, but I think you're doing too much.  Swimming and walking are good, but anything else will send you into an ongoing flare.  Yoga is great, but find something like "Easy Yoga" (I have this DVD and it's really modified perfectly).  The hardest part is knowing your limitations. 

Just remember that it's ok to rest. 

My physician said for me to take a lot of magnesium for the muscular pain.  I'm also taking a supplement called Hyaluronic acid and that seems to be helping the joint pain.  People have had a lot of success with Aloe juice.  I went into physical therapy and they let me try a TENS unit.  That has been great!  If you can get it on the right nerve in your leg and leave it on for 20 minutes, it sends endorphins throughout your body that can last 3 hours and really cut the pain level.

This disease is not happy.  No one seems to really believe you're ill.  "You look fine."  Or they give you a lot of advice on what their friends/family did for a totally different illness that doesn't even pertain to what you're going through now. 

Hello;  I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE).  Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100.  I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases.  When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too.  You then become a person who is 'invisible' to most friends and some family members.  They either don't believe you are in pain all of the time, or they don't know what to say.  It's like you have gone off the radar screen or something;  it changes your life forever and it is a real shock when you find out just how others perceive you and your disability.  Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal.  My husband is great at doing housework each day after working a full day at his place of employment.  An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on.  I just smile (grin) and bear it and put on a good front most of the time.  Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'.  Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things.  Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me).  God is good and I do not take anything for granted (most of the time :)).   Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes)

Blessings to all.