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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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September 24, 2005, 9:46 pm CDT

Dr. Mrs. Bell

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 am glad to hear your story.  It touches me for sure. 

  

I think you are a strong woman!  To pursue a degree and raise children, and do so with fibromyalgia, WOW!  You are strong like me!  Continue on your goal and do not let anyone distract you from it.  You can do it! 

  

Suggestions on exercise would be located on a website of Immune Support.com.  They are great at giving medical advice for people with fibromyalgia.  There is also a chat site in Immune Support.com, in which you can receive lots of personal stories of what has worked for those who are also in your shoes.  I wish you the best!   

  

Personally, I hurt like heck after doing physical activities, but it still does not stop me.  Please read my previous postings the past few days.  I simply do what I can. 

  

Yours truly, 

Kristie : ) 

fyte4acure 

 
September 24, 2005, 10:01 pm CDT

Living with Chronic Pain

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?

As for your husband... I think that it is difficult for him to accept that a disease has taken control over you and he probably feels helpless in helping you out.  Significant others are very protective, and maybe he feels that he cannot help you and wishes he could help you be complete again, but doesn't know where to start.  This is just a tought.  Stress can be hard on him.  Truly this illness is hard for anyone to understand.  I don't understand it.  A friend of mine has CFS - Chronic Fatigue Syndrome.  She had this a few years prior to me coming down with fibromyalgia.  I could not understand her illness, but today I know exactly what she's going through.  I feel evil when I say this, but I'm going to say it anyway.  I pray that one thousand doctors get this illness.  Only then will they begin to realize how real the pain and other symptoms are, and maybe they would be more decent and understanding to their patients.  Sometimes people do not listen and need proof before they believe something.  They do have tests coming in the near future to prove fibromyalgia.  I just wish they'd find a cure though.  Please do write to your state representatives, and ask them for more funding for research on fibromyalgia.  Also, you may contact your state chapter of the arthritis foundation and share your story there, as well as have them send a letter for you in regards to the bill they are trying to pass regarding more funding for arthritis and fibromyalgia research. 

  

Yours truly, 

Kristie  

fyte4acure : ) 

 
September 25, 2005, 5:32 am CDT

take a rest....

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?

Hi, I'am so very sorry to hear that your husband  does not understand your problem. 

  

I think it is very important that you start with taking your rest, have breakfast then take a rest, take a shower...take a rest, after everything you are doing...take a rest, not for an hour just 15 minutes, so you can build your day, I learned that at the rehab. 

Make a list with the things you have to do (every day) then give all these things a number ...what is important and what is not. 

Don't eat sugar, don't drink alcohol,  

Start with easy walking for only 5 minutes everyday, next day 6 minutes, etc. 

Take a warm shower/bath before you go to bed, have a mentholtea to drink. 

Try to find a nice hobby,  

Go for a swim ones a week. 

  

only a few tips but I hope that I can help you a bit, if you want me you can send me an e-mail 

Take care and a big hug from Holand, 

Karin 

  

  

  

 
September 25, 2005, 4:14 pm CDT

Very painful

Quote From: fyte4acure

As for your husband... I think that it is difficult for him to accept that a disease has taken control over you and he probably feels helpless in helping you out.  Significant others are very protective, and maybe he feels that he cannot help you and wishes he could help you be complete again, but doesn't know where to start.  This is just a tought.  Stress can be hard on him.  Truly this illness is hard for anyone to understand.  I don't understand it.  A friend of mine has CFS - Chronic Fatigue Syndrome.  She had this a few years prior to me coming down with fibromyalgia.  I could not understand her illness, but today I know exactly what she's going through.  I feel evil when I say this, but I'm going to say it anyway.  I pray that one thousand doctors get this illness.  Only then will they begin to realize how real the pain and other symptoms are, and maybe they would be more decent and understanding to their patients.  Sometimes people do not listen and need proof before they believe something.  They do have tests coming in the near future to prove fibromyalgia.  I just wish they'd find a cure though.  Please do write to your state representatives, and ask them for more funding for research on fibromyalgia.  Also, you may contact your state chapter of the arthritis foundation and share your story there, as well as have them send a letter for you in regards to the bill they are trying to pass regarding more funding for arthritis and fibromyalgia research. 

  

Yours truly, 

Kristie  

fyte4acure : ) 

I understand completely. I suffer from fibromyalgia too. I was diagnosed 8 years ago. I also have neurophy, from my type two diabetes. My pain management dr. put me on really strong Loratabs and muscle relaxers. They work wonderfully, I don't think I could get up everyday if not for them. I hate the fact that alot of medical doctors I've seen don't believe in fibromyalgia, they say if they can't see it that it's not real. I get really angry because it's like they don't believe that I'm in pain. I've got up and left the office in the middle of the conversation with them. I hope and pray that we can get some kind of handle on it. I pray that someone will come along and fix it.
 
September 26, 2005, 1:34 am CDT

PN not fun!

Quote From: hmeow29

I understand completely. I suffer from fibromyalgia too. I was diagnosed 8 years ago. I also have neurophy, from my type two diabetes. My pain management dr. put me on really strong Loratabs and muscle relaxers. They work wonderfully, I don't think I could get up everyday if not for them. I hate the fact that alot of medical doctors I've seen don't believe in fibromyalgia, they say if they can't see it that it's not real. I get really angry because it's like they don't believe that I'm in pain. I've got up and left the office in the middle of the conversation with them. I hope and pray that we can get some kind of handle on it. I pray that someone will come along and fix it.

I know all too well that PN is not fun.  It's bad enough to be dx with fibro, and then to add PN into the bunch is even worse.  I also have PN.  Might be from the Lyme disease.  Back rubs should not hurt, but they do.  They have to be given different ways at different times.  It's strange.  I also have myofacial pain besides the PN and fibro.  Ugh. 

  

Putting my pretty hair up in ponytails use to be fun.  Although I still do it, it hurts a lot. 

  

Do not let the doctors get to you.  Vent out that anger.  I have once yelled at a doctor.  he deserved it because he was assuming things about my character.  I simply asked for some pain relief to take once in a while, and he assumed I might get addicted to it.  He also told me my pain is psychological.  Now I look back at it, and I should've told him that I'm going to see a psychologist, and when he would say, "Good!," I would reply, "Yes, after seeing you I'm all stressed out!"  Doctors often feel helpless with this disease.  I feel sorry for their ignorance.  I pray that 1000 doctors get this illness, and then come crying to other docs for pain relief and not get it.  I pray that they learn how to be compassionate by knowing the exact pains we deal with every day.  I pray for them to feel the torture we go through, and then to have other docs they go to for help tell them that it's just in their heads.   

  

All of us with fibromyalgia know it's more than just in our heads.  It's in our face, our skin, our arms, our backs, our legs, our feet, our tendons, our lymph nodes, our shoulders, our neck, our hands, our jaws, our chests, our knees, and everywhere else.  Tender points of 18 are a joke to me. 

  

Don't forget to look on this website and be proactive in asking for more funding for research on arthritis and fibromyalgia in your state.  Also ask for it to be federally funded when states do not have the money.  http://www.arthritis.org/advocacy/default.asp 

  

Thanks for your reply, 

Kristie : ) 

fyte4acure 

 
September 29, 2005, 5:30 pm CDT

i too have fribromyalgia

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 WAS DIAGNOSED BACK IN 1988 WITH FIBROMYALGIA, ONLY AFTER FEELING AS IF I WAS GOING TO LOSE MY MIND. THE DR. WHERE I USED TO LIVE HAD ME CONVINCED IT WAS ALL IN MY HEAD. I WAS READY TO LOCK MY SELF UP IN THE HOUSE AND FORGET THE WORLD WAS OUT THERE.  ALL I DID WAS LAY IN A FETAL POSITION AND CRY. WHY! CAUSE YOU FEEL LIKE YOU HAVE THE FLU, ONLY INCREASE THE PAIN OF EVERY JOINT BY 100 TIMES. FINALLY AFTER I SEEN A RHEMUTOLIST AND FINALLY AFTER TESTING DID I FINALLY FEEL AS IF I WASN'T GOING CRAZY. IT TOOK ME A LONG TIME TO ADJUST TO A NEW WAY OF DOING THINGS. NOW I  FEEL THE FASTER I GO THE BETTER I FEEL. I DON'T HURT SO BAD. WHEN YOU START TO EXCERSIZE, YOU'VE GOT TO TAKE IT SLOW, IF YOU HAVE SMALL DOGS, START WITH TAKING THEM FOR WALKS, ONE OR TWO TIMES A DAY. I TAKE MY AROUND THE BLOCK THREE TIMES A DAY. I FIND THAT I CAN'T SIT OR LAY VERY LONG AT A TIME. THE MEDICATION I'M ON REALLY HELP ME, BUT THEN AGAIN IT TOOK A VERY LONG TIME FOR THE DR'S TO FIND THE RIGHT MEDS THAT WOULD WORK FOR ME. HAVE YOU TALK TO YOUR DR TO FIND OUT WHAT THE BEST COURSE OF ACTION WOULD BE? YOU SHOULD DO THAT FIRST AND FOREMOST. DO YOU HAVE FRIENDS WHO WOULD WALK WITH YOU OR EVEN YOUR CHILDREN, JUST START OUT SLOW.      SINCERELY DAZED 101 

 
September 29, 2005, 8:25 pm CDT

Living with Chronic Pain

Quote From: dazed101

I WAS DIAGNOSED BACK IN 1988 WITH FIBROMYALGIA, ONLY AFTER FEELING AS IF I WAS GOING TO LOSE MY MIND. THE DR. WHERE I USED TO LIVE HAD ME CONVINCED IT WAS ALL IN MY HEAD. I WAS READY TO LOCK MY SELF UP IN THE HOUSE AND FORGET THE WORLD WAS OUT THERE.  ALL I DID WAS LAY IN A FETAL POSITION AND CRY. WHY! CAUSE YOU FEEL LIKE YOU HAVE THE FLU, ONLY INCREASE THE PAIN OF EVERY JOINT BY 100 TIMES. FINALLY AFTER I SEEN A RHEMUTOLIST AND FINALLY AFTER TESTING DID I FINALLY FEEL AS IF I WASN'T GOING CRAZY. IT TOOK ME A LONG TIME TO ADJUST TO A NEW WAY OF DOING THINGS. NOW I  FEEL THE FASTER I GO THE BETTER I FEEL. I DON'T HURT SO BAD. WHEN YOU START TO EXCERSIZE, YOU'VE GOT TO TAKE IT SLOW, IF YOU HAVE SMALL DOGS, START WITH TAKING THEM FOR WALKS, ONE OR TWO TIMES A DAY. I TAKE MY AROUND THE BLOCK THREE TIMES A DAY. I FIND THAT I CAN'T SIT OR LAY VERY LONG AT A TIME. THE MEDICATION I'M ON REALLY HELP ME, BUT THEN AGAIN IT TOOK A VERY LONG TIME FOR THE DR'S TO FIND THE RIGHT MEDS THAT WOULD WORK FOR ME. HAVE YOU TALK TO YOUR DR TO FIND OUT WHAT THE BEST COURSE OF ACTION WOULD BE? YOU SHOULD DO THAT FIRST AND FOREMOST. DO YOU HAVE FRIENDS WHO WOULD WALK WITH YOU OR EVEN YOUR CHILDREN, JUST START OUT SLOW.      SINCERELY DAZED 101 

I'm glad you are doing better!  Fibromyalgia is one disease hard to control.  But Peripheral Neuropathy is amazingly difficult to control.  I'd rather just have fibromyalgia and CFS.  Peripheral neuropathy along with myofascial pain combine with fibromyalgia and CFS - Chronic Fatigue syndrome, is a nightmare that does not get any better.... unfortunately. 

  

By the way, I heard that CFS and fibromyalgia can be a result of poor circulation and mitral valve prolapse.  While I do not know how true this is, they've done studies on this since 1998.  There are many articles on the web pages with doctors having done research on people with CFS and fibromyalgia, saying that there might be possible heart failures causing this.  I wish they'd do more research and find out how true this is, and get on the ball!  I am not satisfied living a miserably painful life.  No one should be, and we should ask that our government pays more into research for this.  See the arthritis foundation at www.arthritis.org and also visit the Immunesupport.com Let's fight for a cure and not allow people to pass us off, as we need a cure. 

  

Yours truly, 

Kristie : ) 

fyte4acure 

 
September 30, 2005, 11:00 am CDT

Your answer

I've been doing a shared diary - How To Get Healthy The Natural Way First.  You may want to read it.  I will continue to add each weekday.  I think this is your solution.
 
September 30, 2005, 2:37 pm CDT

Um OK, .. ha ha!

Quote From: bastanz

I've been doing a shared diary - How To Get Healthy The Natural Way First.  You may want to read it.  I will continue to add each weekday.  I think this is your solution.

Um, OK, ... ha ha!  I appreciate the thoughts!  Always open to suggestions... will always listen to any regardless of how they are. 

  

fyte4acure : ) 

 
October 5, 2005, 3:25 pm CDT

Hidradenitis Supperativa

I am surprised that with many chronic disease's some of us suffer with , especially Hidradenitis Supperativa , that Dr. Phil would put shows on such as " i cant handle my three year old" There have been many people who write in the Dr. Phil in reference to this disease asking, begging for some help , help in getting the word out that it does exist and not enough is known about it and if someone , like Dr Phil would help us in getting the word out maybe we could get some help , but no, instead he has women who cant raise children without complaining about it , or mother in laws who dont like who thier sons married, that is more important , or that is what gets ratings, With someone who has as many contacts and someone who said on his show he was committed to getting awareness for rare diseases , he sure has let down a huge community , the Hidradenitis Supperativa community, Thank you for letting me air my concern , at least someone will listen ,  

 
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