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Topic : Living with Chronic Pain

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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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May 4, 2006, 3:24 am PDT

Hello Fibromyalgia

 Hi I have just discovered this message board and am so excited(bad choice of word - relieved?) to hear of others who know how I feel! I am a young wife and mother, 21, was diagnosed with Fibromyalgia 6 years ago after years of tests and scans to find out what was causing the various complaints in my body. As you all can attest to, years of having pain, but nothing 'offically' wrong with me caused severe depression. I live in New Zealand, which you might not have heard of, and although we have a wonderful government and free public health system, medication is not as readily available as in the States. I take no pain medication - i used to, but the side effects of nausea were too much for me. I felt like I had mentally learnt to live with pain, but I can not live with nausea! During pregnancy my FM flared up majorly, I was worried that my pain was going to be at a new heightened level for ever. However, after giving birth(ironically) I found my pain disappeared! I have lived pain-free for 6 months, but in the last month it has all gone downhill again, I suspect with my baby's weight gain putting strain on me. It is getting into winter also, which is always bad for me! As I write this my fingers are stinging!
   From reading these messages it seems like the medical system in the States knows a lot more about fibromyalgia than here! Basically I was diagnosed with it, not really told who to contact, or what I could do, and six years later I'm still clueless! I started reading a book called "what your doctor doesn't know about nutritional supplements . . .etc" but it was some-one else's book so I never got further than the introduction!
   So I suppose this is a yelp of help ./ . . . what helps, what doesn't? Are there any websites devoted to fibromyalgia? Any other books I should be looking for?
I am proud to be a New Zealander, but here in little old NZ, not much is known about FM beyond how to diagnose it!
   Mentally I am coping well with the pain, I have a wonderful supportive husband, and not working means not being too exhausted, and my baby is such a joy! I do wish I knew how to actively combat this thing though. And I am wondering how much of my other body symptoms(for example, exhaustion, headaches, insomnia, never feel rested - at any time of the day I could go to bed if I let myself!, flu-like symptoms off and on every few months, weakened immune system, weak teeth etc etc etc!) are related to FM - I know so little!
Thanks for all your stories, everyone is so strong and determined. I am praying for all of you who suffer with me - our God is bigger than our pain! Keep on fighting!
Rachel
 
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May 4, 2006, 5:09 am PDT

Hi Magie55

  

Today we are going to have a big bagel with cream cheese on it and a cup of coffee nice strong coffee ....If you don't like cream cheese I have Jelly your choice of grape or strawberry and if you don't drink coffee I have milk or orange juice....So hurry up get outta bed before I eat your bagel too! LOL 

  

Bobbiek 

 
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May 4, 2006, 6:12 am PDT

GOOD MORNING ALL!

Hey all, I am back! I have missed you all so very much. We had a slight family emergency and I had no way to get to a pc. Everything is fine now. I am so excited to see all the new friends we have. WELCOME to you all. I also had a dr. visit yesterday. Doubled my dose of Lyrica and adjusted some others. Bp is still up there, said lets just watch it, same as last time. On med for it but ......lets just keep watching. I am to go back in a month. Fasting so we can do more blood work. I hope he has fun on his vacation that I seem to be funding,HAHA. I hope that everyone has a day filled with hope and love. I will be checking in tonight. I am so happy to be home and back to all of you. With many prayers and much love,        Cheryl Lynn 

 
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May 4, 2006, 6:34 am PDT

Question

Quote From: prettym

I am a 33 year old, mother of three and I suffered from chronic pain syndrome for a few years.  I recently did a cleanse and I haven't had any pain for months now.  I had tried eveything from, antidepressants to antiseisure medications to manage my pain and now I don't have to.  The products are by isagenix and you can get them online - what do you have to lose? It just might work for you too. here is the website to order from - I did the 9 day Cleanse and just got my body feeling good and now I wouldn't be caught without my product.  I feel amazing!! The website is prettymommie.isagenix.com  Many Blessings! 

Would you be kind enough to tell me what you did to do the cleanse? I have horrible back pain and I am on lots of medication and have been for quite a while. I need to clean out my body and system. 

  

Thank you for this information. 

  

Donna 

 
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May 4, 2006, 9:41 am PDT

New Here

Hello all....I'm new here.  I just wanted to post and introduce myself.  I've read through a lot of the posts....and can I relate!  I'm 33 y/o, mother of 2 boys.  Married 2 years to my 2nd husband.  I've been living with chronic pain for over 3 years now.  I have a condition called pseudotumor cerebri, otherwise known as idiopathic intracranial hypertension.  It's kind of like the babies that have that have too much spinal fluid and their heads get huge....only as an adult, your head can't expand, so it puts pressure on your brain and nerves causing intense pain, depending on how high the pressure gets.  I also get migraines, but nothing compares to a high pressure headache.  My head hurts every day of my life.  Some days are better than others.  But my bad headaches can last for a week or more before the pressure goes back down.  It's hell.   

I've had these high pressure headaches as long as I can remember, but I never knew what they were.  They are so unbearable that nothing, and I mean nothing makes them go away, pain meds can help make them somewhat bearable, but if I let it get too bad before taking anything, then it's too late and nothing will help.  Then, in February of 2003, I woke up with one of these headaches and it never went away.  Bending over, coughing, sneezing, going to the bathroom all make it hurt worse.  I can't lay flat on my back or put my head down at all or it gets worse.  Beyond this, this disorder causes memory problems, problems with balance, numbness and tingling in the extremities, vision problems (some people lose their site), hearing problems (I've lost a lot of my hearing already), loud ringing in the ears, constant fullness in the ears like being in an airplane, among other things.  It's a somewhat rare, though underdiagnosed disorder.   

And like I've seen others mention, because nobody can see the pain and because I'm so young, I've had people accuse me of not wanting to work, being lazy, trying to get attention, drug seeking, etc, etc.  It's so miserable.  I've *always* been a positive person....somebody who goes after her dreams....somebody who works hard for what she wants....somebody who has more self-discipline than the average person.  I earned a masters degree in my 20's in less than 2 years!  I'm used to working hard, 60-70 hours per week in the medical profession!  So, to go from tliving my dreams and having my whole life in front of me to now unemployed, possibly facing disibility and trying to live with daily pain not knowing when or if this will ever go into remission is HUGE for me.  I don't want to live the rest of my life in pain!  I'm young!  I still have hopes and dreams I want to accomplish!!!  And to have loved ones accuse me of just not wanting to work when I'm having my dreams *crushed* by physical limitations is just devastating.   I've been putting off disability....that's not what I want.  I'm wanting desperately to work again....and to be 'normal' again.  But I don't know where life will take me.   

I know from reading other posts that I'm not alone.  It's not that I like other people having to go through this....but it is comforting to know that it's not just me.  I've often thought that there must be something wrong with me.  I guess because it can't be seen or measured, especially with something like headaches (though they've measured my intracranial pressure, which you *think* would be enough!).   

Thanks for listening to me whine.    

 
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May 4, 2006, 9:50 am PDT

LIVING WITH CHRONIC PAIN @ AGE 30

  

Hello,  

I have suffered with chronic pain since age 14, I am now 30.  I had herrington rods put in back at age 17 due to scoliosis and have been suffering more ever since.  I applied for disability 2 yrs ago and was luckily approved about 10 months later the first time.  I have 3 girls ages 11/8/4 and they suffer too beacuse I cant do much with them.  The reason I am disabled is I have digenerative Disk Disease and many other back problems.  I am supposed to have surgery sometime this year but, I am so scared. I remember the pain I had at 17 like it was yesterday.  My life consist of staying home most of the time because I cant go anywhere with out hubby cause legs give out alot from nerve damage.  I also stay depressed too, no meds seem to help the depression.  No meds help the pain either, I mean sometimes the edge is taken off but, for the most part I cry every day.  My surgeon says he will release me as a patient if I dont have the surgery cause he cant treat me with just pain meds, I have for over 1 yr been going to a pain clinic and I hate it.  They are nasty and full of crack heads abusing the system!  Very few people are legitimate. Fow those who are please take no offense as I must go too.  I only hope my life will soon better for the sake of my family and me.  I am too young to hate my life.  I wish I could just walk or sit without pain.  I feel for all those who suffer with chronic pain, I truley understand and I will pray for everyone.  Please feel free to email me @ sweet2u72875@yahoo.com  I enjoy meeting new people who understand how I feel.  YOU ARE ALL IN MY PRAYERS AND THOUGHTS.  GOOD LUCK WITH LIVING DAY TO DAY , thats how I do it day by day.  Mabe some of us can all meet one day for our own chronic pain convention!  That would be fun, lets think about it--DR PHIL'S PEOPLE THATS A GOOD IDEA TO HELP US GET TOGETHER!!!!!! HERES TO NEW FRIENDS!!!  

  

WENDY,  

LOUISIANA   

(yes I was a hurricane victim too-lost it all & adds to depression)  

 
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May 4, 2006, 10:08 am PDT

Chronic Back Pain & Problems

I was so glad to see this on the topics. I was hit by a truck going 50 mph almost 5 years ago. It herniated a disc and then the disc below it started collapsing. The MRI suggests that degenerative disc disease could be there as well, probably started by the initial injury. I went to a doctor and they said it was facet joint problems and gave me injections which did not work. That was when the MRI was ordered and the disc problems were found. I had other procedures, and nothing helped. I started taking medication because the pain was so bad I literally could not get out of bed. At least now I can get up and do things. I hate that a lot of negetive attention is addressed about prescription pain meds. It seems that doctors are getting scared to prescribe, because the media has only shown these addicts who do not take their meds like they should. I just moved to the Memphis area, and am having a terrible time finding a doctor that will take me on and prescribe what I have been taking successfully for years. (Or maybe actually fix the problem if at all possible, but I think I have scar tissue in there where ligaments and tendons were torn, as my doctor back home thinks has happened as well) One place wants to do facet joint injections even though my records show all the disc problems and the previous injections didn't help. I do not take more than I should, even when the pain seems extra bad, because I know I only have a 30 day supply and if I use it more there will be none left, and it controls the daily pain I live with. It bothers me that shows do not discuss the people who really need it and do what they are supposed to. There are a whole lot of us out here, but all you hear about is the people who abuse and it gets the country in an uproar and doctors getting scared.  

  I just do not know what I am going to do. The pain is there all of the time. I do not want surgery, because so many say it makes it worse and I am terribly scared of going under anesthesia and dying. I have read some of these posts, and it IS a lonely experience that only others with constant pain can know. When I was in the last doctor's office I went to, a man in his 60's and I got to talking and he said that his pain is so bad most times and he has thought of suicide. The doctor there just wouldn't prescribe what it takes. ( I personally think it is a result of the whole Elvis ordeal) I really felt bad for him and he had tears in his eyes. A few others in the room jumped in with their stories, and even though we were all strangers, we all got teary and understood what we were each going through. I will probably never see any of them again, but for an instance, we were all close in the soul. I am glad this topic is here so at least we can come here and now know that we are not alone. It is hard to handle it alone, because even my family gets tired of hearing about my pain, and tired of the times I have to take to my bed. I quit talking about it as much, because they don't really understand and it is going on 5 years. It IS an effort to just do the things that have to be done around here on some days. I do not have a helping husband like some of you. :(  He will help with our daughter's homework when his work schedule is on the week where he is home at night, but nothing else. I try my darndest to keep everything done, but it can be a struggle.  

  Anyways, I am just glad to express my feelings, even if no one reads this. Blessings to all who are living with pain everyday. 

 
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May 4, 2006, 10:32 am PDT

Fibromyalgia pain

Hi all - I am a 33 year old mother of two boys, ages 6 and 2.  I have recently been diagnosed with Fibromyalgia.  It started with me waking up with body aches every day - I thought I had the flu.  But it never went away - my doctor finally diagnosed me after ruling out a lot of other things.  I am currently taking Effexor, and Trazadone to help me sleep, and sometimes pain medication as I need it.  I am also doing water therapy, which is helping a lot - I go three times a week in a 95 degree pool and do exercises to strengthen my muscles, particularly my legs.  It's the worst in the mornings until I get up and move around for a little while.  I work behind a desk all day, four days a week.  So I make sure I get up every half our or so and walk a little bit and stretch.  At first, it was difficult to keep up with my kids and to do everyday tasks like housework.  But, now with the therapy and medications, I am doing better.  Hopefully it will stay this way for a long time.  I have also heard that a new medication called Cymbaulta is a good one.  The doc has told me the more active I am, the less pain I will have.  If you stay sedentary, your muscles will deteriorate and you will have more pain.  The key is activity.  Thanks for listening. 

 
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May 4, 2006, 11:17 am PDT

Dear

 
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May 4, 2006, 11:44 am PDT

I understand you

Quote From: djmatt

I am in severe pain daily.  It feels like knives are stabbing in my spine, up and down.  The pain meds don't relieve this, not enough to make a difference.  I sometimes take 3 or 4 Ultram when I wake up still with no relief, also with the Duragsic Pain patch, Oxycodone, Neurontin and Tylenol.  

  

My employer has robbed me of my livelihood, my life, my hopes and dreams, and have lied to me, and will not return my calls.  They discontinued my benefits without warning, and after promising they would not.  I do not know my employment status, they will not tell me.  

  

They denied me permission to return to work on three different occasions with a release from my doctor each time.  I have contacted the local Untied Way, attempting to get some guidance, they advised me to call the consumer credit counseling service which is closed until Thursday.  

  

I have been receiving suspicious phone calls.  I have had people watching me.  For instance, recently someone in a suburban pulled into my driveway up about 100' from the road and about 30' from my house and was taking pictures.  When I walked out the front door to confront him, the man immediately jumped in his vehicle. backed down this long narrow gravel driveway hauling a@*.  Before I could grab my cam-corder to zoom in and capture his tag number and the vehicle, he had backed out onto a major highway giving no thought to this hill that is too steep to see over if traffic is coming, and raced North spinning tires and all.  And all I did was walk out the door.  

  

The almost exact thing happened on three or four different occasions when I was at the back of the property, and was in the vicinity of the road that is perpendicular to the major highway.   This person was in a Mustang, super fast because each time I spotted him he was looking directly at me, and as before, before I could get a tag number, he hauled asp burning rubber.  

  

The individual who promised me that the company would not discontinue my benefits is now denying this, he just finally contacted me.  He passed the buck back to HR and he said he had nothing to with it.  But he is the one who refused to allow me to return to work.  

  

The stigma of depression...that's what it is.  This is the man, who had the nerve to ask me if I was having sexual relations with a former employee.  He had no cause for this.  She never filed a complaint or I would have known.  She did file a complaint against someone in upper management, and I backed her up on this about sexual harassment.  I had to convince her that her job was safe if she did file the complaint.  Nothing was done but a slap on the wrist and an apology (admission) by the manager.  She later left on her own.    

  

I emailed the CEO and V/P out of France, the home base for this company prior to my medical leave expressing my concerns about this very thing.  I emailed him last Friday and have not heard back from him.  I still have not heard from HR.  She is avoiding me.  She led me to believe that I would continue receiving benefits, but at a lower rate last week, and that I would have my answer by Friday 5:00 pm EDT.  She has not returned any of my calls.  I called the Atlanta area office and left a message, they told me she would be there by noon EDT, and they would give her the message to call me as soon as she walked in the door.    

  

No matter who I contact, I cannot get any kind of immediate assistance.  

  

What do I need?  

  • A doctor who can find the source of my pains and treat them effectively.
  • The Vagus Nerve Stimulator implant procedure.
  • A way to stay a float financially while these are being done.
  • A job with a company that is honest and humane, and built on trust, with an income comparable to what I was making with the benefits or
  • The means to start my own business, as I have mentioned I have some tools, a dilapidated shop, a few pieces of lumber.  I just need advice and a push getting it going.  Or
  • Any kind of home based business, computer related would be great.  Dealing with people would be great. 
  • If I could feel better and see a brighter future I would have the will to quit smoking and to exercise and eat healthier.
  • And if I could get to this point I will push my campaign for the fight against child abuse.

This is physical and mental and emotional TORTURE  And years of this is just too much.  There has to be a way out, some answers, a glimmer of hope somewhere.  I just need some help getting there.  I did not choose to be in this situation.  

  

It is a know fact that animals and people prey on those weaker than them.  And although Depression is not a personal weakness, it appears that way to others and they take advantage.  I can get a list of people who will tell you how hateful, mean and selfish my supervisor has been.  Even from years past.   

  

It just feels hopeless when I feel I have contacted everyone in the book, and I am still no closer than I was a year ago to having a normal life.  

  

Can some one please, please help me?  

  

Just imagine going through every day with the feeling of knives jabbed in your spine, up and down. And people just walking all over you because you cannot defend yourself.  Not just employers, but all kinds of people.  

  

Imagine being so depressed that you just cry and cry, feel guilt, anxieties, pressure in your head like it's going to explode.  

  

I have been to numerous doctors, and here I am, still sitting here in this sinking boat without a life raft and no land in sight.   

  

No, I do not intend to commit suicide, I would not do that to my family, but it doesn't stop the thought from crossing my mind almost every day for 16+ years.  Imagine feeling that worthless as a human being.  That defeated, and I have so much I could offer to this world, to our society and to my community, if I could just have my life back.  

  

Losing this home, again, only a 100,000.00 dollar home. That's one hundred thousand dollar home.  This is very modest with ten acres of land, so that I can, if and when I am well enough, walk into the woods and talk to GOD.  That's what I did when I was young.    

  

It's like I am asking too much out of life.  And had it not been for my illnesses and mistreatment by my employer(s), my life would be fantastic!  

  

  

 

I am sorry you r in pain, I live with it daily too. I would definitly get an atty.  and he will help u go over things and find out about the ppl watching u.  He can set up his own ppl to watch the ppl watching u and find out who they r.  (I am abbreviating to save space and time) An atty can also even just send out a letter representing u and they may get scared and settle things with u, even if its workers comp or giving u ins again.  I think that is a great idea, some attys work out a pymt plan and some pro bono for ppl who really need it like u.  This is a real problem & it is not good to have strangers watching u.  PUT A NO TRESSING SIGN OUT AND CALL POLICE TO PASS BY MORE.  I read ur story & all others on here and cry, it is so sad what we go through.  I  have had so many jobs as a medical assistant that it isnt funny, they got tired of me missing work b/c sometimes i couldnt function that day & i had too many dr appts so they would always let me go due to missing work-didnt care if i had docs note either. Left me no choice but to get on dissability-luckily i was accepted 1st time--not that it pays me all i deserve but, at least it covers my pain mgnt doc & meds, yep my whole ck of $642 every month is toward medical for me, which leaves stress on my hubby cause he has to pay all the bills & it is very very hard living pay ck to pay ck.  My kids suffer too b/c we cant spend $ on ativities w/ them as we should be able to do.   Sad thing is i tried to commit suicide in 2004 and alit did was get me 1 night in the pycho ward for nothing---the pills didnt even make me sleepy cause my body so used to the meds i take---the ER was shocked, they couldnt believe that after swallowing 30 tranzene & 30 percocet i was ok--truely no syntoms. Actually its sad cause i was still in pain!   Anyway, I could go on & on but, I will stop.  Please email me if u would like to, I dont mind. 

 

Wendy 

AKA sweet2u 

 
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