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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 23, 2005, 5:28 am CDT

Some Help Maybe

Quote From: fyte4acure

Please do find another doctor.  While your doctor may be telling you the truth, the doctor should also provide some hope for you, not make you seem like damaged goods.  I will not go on disability as I am stubborn and want to make something out of my life as I am still very young (30).  You are the one who decides on disability.  It is okay to do so if you wish.  However, You are not damaged goods!  Please read my comment recently posted on funding for a cure. 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

  

  

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 

 
September 23, 2005, 7:08 pm CDT

Dear Karin

Quote From: dutchkarin

I'am 38 years young and since 14 years I know that I have Fibromyalgia (FM), I had many many bad years, I was in a wheelchair I could not walk for 15 minutes. 

Since 1,5 years I feel so much better that I start working again, I ever use my wheelchair. 

I start with a new hobby.......running so you can feel better with FM, I 'am not everyday painfree but I can handle it. 

  

For 1,5 years I found a doctor who gave me good advice, I use now some supplements and a diet against the pain from FM, and I feel much much better. 

I can by the supplements in a drugstore no problem at all, I use a Magnesium, MSM, mutlivitamines, omega 3&6, and chlorella. 

  

I hope you can read my englisch because it is not that good,I am from Holland. 

  

Perhaps you can find a dochtor who can help you with this??? 

Take care,Karin 

Dear Karin,

  

 

 

  

 

Isn't that amazing!  MSM works for you too!  It worked for me as well.  I am a chocoholic and I've found that there is lots of Magnesium in chocolate.  Correct me if I am wrong, but I believe I am biased on this to justify my chocolate cravings and habits.  Luckily I have my father's metabolism and stay at a steady 130 - 135 lbs... Thank God!  I'm also very active, which helps keep the weight down.  I did not know about omega 3 & 6.  I shall ask my pharmacist about that.  I know nothing about chlorella.  Again, I will ask my pharmacist about that too as well.  Thank you for sharing your story!  Your English is better than my French, although I try not to swear, ha ha.

  

 

 

  

 

Unfortunately I do get too active and pay for it.  I love long bike rides in the country.  I am also an apartment complex manager.  Painting, mowing, cleaning, vacuuming, fixing up dry wall, and fixing anything else keeps me busy.  Unfortunately I have more than I can handle in pain.  Pain meds do not do well with my stomach so I only take them when the pain is too much to bear, because I get allergic reactions and get nauseated as well.  But I'll take a few skin break outs just to be able to put up with the pain better.  I find that when I take them on occasion, my body does not get use to them and I'm better able to handle the pain when I do take them.

  

 

 

  

 

I hesitate, when I apply for jobs to mention I have this illness.  Employers, often just like doctors, think this is an "In your head" syndrome.  I feel sorry for their ignorance, but that just means I must stay silent when I apply for jobs.  I just graduated from college with a double major in social work and psychology.  I hope to help others improve their quality of life.  I will get my certification soon in social work. 

 

  

 

I could NOT, absolutely NOT, go on disability.  There is no way in God's green earth will I be told I can only make a certain amount of money and never be able to afford a loan on a house.  I want to live out in the country and feel the nice breeze go across my skin and hear the silence of the country life, as I once knew when I was a youngster.  My goals are to get a good paying job, support myself, pay off my student loans, write a few books on what it is like to live with chronic pain, publish lyrics, write songs, and help to improve the quality of people's lives.  I want to live a lucrative and comfortable life, regardless of the unbearable pains.  I will not allow the government to tell me how much money I can make.  Also, the word disability really peeves me.  I am able to do so much, yet they call it a disability.  The word "disability" should be changed for those who get governmental assistance.  It is a self-fulfilling prophecy to say, "I'm on disability."  Anyway, I'm rambling, ha ha.  What I'm trying to say is that I won't go on disability because I know in my heart and mind that I have too many abilities and frankly they couldn't pay me enough to stop working.  For anyone else it is his or her prerogative, but I will not go on disability.  My doctor said I should get on it, but I told him "absolutely not!"  Working brings a sense of productivity in my life.  I would feel worthless if I could not accomplish things.  Although there are times I cannot do so much or deal with more pain than I can handle, I still remain strong and accept that I can only do what I can, but I will not give up totally.  That's my opinion on disability for me, and I will only hold myself to that degree of expectation.  Whatever anyone else does is up to them, but not their doctors.

  

 

 

I hope to help others to realize they are not along in this, and let them know that speaking up to the government to demand for some more funding on medical research for fibromyalgia will empower us! 

 

  

 

Thanks for listening and replying,

  

 

Kristie : )

  

 

fyte4acure

  

 

 

  

 

  

 
September 23, 2005, 7:09 pm CDT

Living with Chronic Pain

Quote From: wlehmuth

  

  

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 

Will, 

  

It is ironic you mention this website.  I've been a member of it for a long time coming now.  It has helped me out tremendously! 

  

Thank you, 

Kristie : ) 

fyte4acure 

 
September 23, 2005, 7:47 pm CDT

glad i could help zippie

Quote From: zippie

 thanks for that, i couldn't  get you're specialists site but i managed to get the other site...
there was so much to take in but thanks to you i can give my doc the web address & he can learn more about it (lol)...
I hope you have a good weekend with low pain better still no pain take it easy. zip x

Ha, most of the time I have found that WE have to educate our doctors!!! lol 

Glad I could help! you have a great weekend too! 

 
September 23, 2005, 7:54 pm CDT

prof

Quote From: profderien

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! 

  

Prof- so I am sorry you have had all the problems after your surgery, but I am glad for you that it is over. I hope they can find a way to help ease the pain. CRPS likes to bite us in the butt if anything unusual is going on. Best wishes on your healing 

Blowing kisses (no touching!!!) lol 

Mel 

 
September 24, 2005, 7:03 am CDT

Bad meds! Bad BAD BAD Meds!

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 

Nekocats, 

  

Sorry to hear about the Neurontin.  I tried that crap and it made me depressed.  They also put me on a med called Tramadol.  That stuff made me violently ill.  I became very dizzy and sick.  I was throwing up during bike rides.  I was not my happy-go-lucky self anymore.  I would not go on high doses because the med did not touch my pain one bit anyway.  Why take high doses of something that you aren't sure will help you, especially after you find out it messes with your mind psychologically, as well as your body chemistry.  I will never try that stuff again.  I also do not take anti-depressants for pain.  I am not depressed and they only increase my heart rate really badly.  Plus they make me feel like a zombie and I can never sleep enough while on them.   

  

Please tell me more about your volunteer work.  I would love to hear about it! 

  

Take care, 

Kristie : ) 

fyte4acure   

 
September 24, 2005, 7:29 am CDT

Trapped?

Quote From: betty8271

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. 

 

Betty, 

  

I have heard the saying of being trapped in an old body.  I have joked and said the same thing myself.  But now I've come to realize I am not trapped.  I am unique.  Having this illness has made me strong.  I've realized so much about myself that I have not known.  I have connected with people in ways I hadn't before this illness.  This illness has tested my strength and made me a stronger person.  You're probably thinking, "Oh Lord!  How can anyone respond positively to such a painful illness?"  Well, I've done some coping for sure.  I've gotten past the helpless stage though.  I no longer feel trapped. 

  

People have told me I look fine.  I know I'm very attractive!  I am glad this illness does not show it's ugly face.  However, it does sometimes, like when I try to walk or be active.  I appear crippled.  But I thank my lucky stars that this illness is mostly invisible. 

  

Yes, people do give me advice on how to improve my health.  Now I just listen and realize they do not understand, but are trying to help, because they care.  I am grateful that they care. 

  

Yours truly, 

Kristie : ) 

fyte4acure   

 
September 24, 2005, 3:04 pm CDT

Living with Fibromyalsia

I have fibromyalsia and am in a lot of pain.  I begin going back to school this fall planning on obtaining a degree in elementary and special education.  I don't think that my husband quite understands my disorder but my children usually help me out.  I take all of my meds but it doesn't seem to help much.  When I try to exercise I usually can not walk for the next day or two.  Does anyone have any suggestions?
 
September 24, 2005, 5:23 pm CDT

Helpin husband who has RA

Quote From: ladidi100

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.

My husband who will be 46 next week was finally diagnosed with RA about 2 yrs ago.  Since receiving the proper diagnosis life has gotten much better.  Prior to his diagnosis though we were living a nightmare.  It broke my heart to have to sit by and watch my strong husband be reduced to tears and not know what was wrong or how to help.  For about three years we had no idea what was happening.  There were many days when the disease got the best of him physically, but he was always able to maintain his awesome "no worries " outlook.  I truly believe that is what kept us all sane.  First we were told there was nothing wrong - big mystery.  Then it was Lyme so why not pump him up with a rocephin IV.  Turns out not lyme at all.  I hate to even think about the unecessary drugs that were pumped into him.  Finally and happily he went on remicade and that work wonders for quite awhile - over a year I think.  He was his old self and feeling good.  Then he seemed to build up an immunity to that and has since switched to Humira and again all is well.  No flare up and working steadily.  We will just continue to take it one day at a time and do all we can to keep him feeling well.  I have to mention that through it all my husband has been an amazing person who never really let the illness get the best of him "mentally".  Even when he couldn't move without  unbearable pain he never really let it get to him.  He has been an inspiration to me and a wondeful example to our children.  He is our hero and will will stand beside him no matter where this miserable disease takes our family.  Good luck to all. 

 
September 24, 2005, 9:10 pm CDT

Fibromyalgia

Quote From: hmbell

I have fibromyalsia and am in a lot of pain.  I begin going back to school this fall planning on obtaining a degree in elementary and special education.  I don't think that my husband quite understands my disorder but my children usually help me out.  I take all of my meds but it doesn't seem to help much.  When I try to exercise I usually can not walk for the next day or two.  Does anyone have any suggestions?

I also have fibromyalgia. I find that if I exercise I feel better. However, it's very important to be careful about how much and what type of exercise I get--or I can feel very much worse for 3-5 days. I recommend you start by walking. If one or two blocks seems like a lot, start there. (If that's too easy, try half a mile.) Do it every day. When you feel able, increase the length of your walk, but just a little bit at a time. It's important to be consistent and to start slowly and to increase slowly. (I have a dog, which helps with my consistency--she doesn't let me skip our walk!) The same goes for any other type of exercise you might want to try. 

  

Make sure the sleep you're getting is good quality sleep, otherwise your symptoms will be worse. If you wake up a lot during the night, or if you wake up unrefreshed in the morning, talk to your doctor. When my sleep improved, it made a big difference in the quality of my life. 

  

 
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