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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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July 25, 2005, 2:56 pm CDT

Living with Chronic Pain

Quote From: sukie45

I have been living the summer from hell. I have fibromyalgia and I have lived from one flare to the next since early spring. My dr. is sympathetic and my husband also understands. I take every supplement that I read about that is suppose to help.

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics. I remember one week feeling really up and begining to "feel" my body as a good thing. the next Monday my knee gave out while on the treadmill. I found it difficult to use the machines and I kept dropping the free weights. My dr. told me to lay off the gym until I felt better but my aquabics were ok. The next week during an aquabics class I found myself fighting to breath and the chest pain was something else. Back to the dr. No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee. As I said my Fr. is sympathetic but I feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer. I know there are people my age doing wonderful things but not me. I am depressed. I am fat. I am out of shape. I am out of hope.

Is there anyone else out there like me. What do you do? Please don't tell me to look on the bright side or any other moronically cherrie euphamisms.

By the way this is one of my good days.

You have described a lot of the symptoms I am having with RA.  I am currently on a regimen of injections of Enbrel (2X wkly) and methotrexate (1X wkly), plaquenil, folic acid and a couple of others for blood pressure.  I am lucky in that I have a great drug plan but I do pay a monthly fee to keep it going.  If I didn't have it, Iwould be paying approx. $3000. every eight weeks (Enbrel and metho is very expensive).  Like you, I too feel that people my age are doing wonderful things but why is it you never hear about the people like us???  I had to give up my full-time job because working caused big flare ups.  I try to stay positive for the most part  and do pretty well at it, but the constant pain and fatigue can get the better of you but no one wants to hear about those things.  I am also depressed a lot of the time, I am fat (unable to walk most of the time), out of shape but never out of hope. Even though it's hard, I like to take ONE DAY (sometimes one minute) AT A TIME because if you try and look at the big picture and what lies ahead, the depression overtakes what little hope you have left.   I won't tell you to look on the bright side or offer any moronically cheerie euphamisms, but tell me what are the other choices???  Suicide isn't an option because I have a wonderful, helpful husband and two sons and two grandchildren who love me and I wouldn't want to cause them hurt and pain because of my actions.  Let me know if you find another coping mechanism (besides drugs) other than prayer and hope.....I'd really be interested in considering giving it a try. 
 
July 25, 2005, 9:46 pm CDT

Ouch

I have primary progressive multiple sclerosis.  I took care of people with ms when I was a nurses aide but never realized how they felt until recently.  I have a whole new understanding of what they were going through.

Heat effects me.  Cold effects me.  Medication helps but geeze, I get so tired of being tired! Then to add to it the medications don't take care of the problem.  Sure they take the edge off but what I would give for just ONE day without a spasm, cramp, electrical shocks etc.  Ahhhh, some day maybe it'll happen :)

People don't understand those with chronic pain.  I didn't until these past months.  People don't understand when we don't want to talk.  Socialize.  Laugh.  People don't understand when we just don't have the patience.  Some days I find I'm snappy, or have what others consider an attitude. 

I used to get angry at others for making comments etc.  But now I'm just thank ful they don't know what it's like. I don't wish chronic pain on anybody.

 
July 26, 2005, 6:09 am CDT

HI JB7CTX....

Quote From: jb7ctx

I have a 5 y/o son who is Type 1 Diabetic and insulin dependant. I feel pain in my heart for him. Each day is a struggle for him. He has to have 3 shots of insulin a day. He is angry. He yells: " I dont want diabeties! I dont want no shot, it hurts! " I know he has to have these shots in order to live, but he doesnt understand that yet. I have done alot of research on diabeties. His life span is 10 years shorter than someone without it. He is at a higher risk for heart failure, kidney disease. He is subject to start having heart attacks and strokes in his late twenties, early thirties. His vision will eventually get poor. If his blood sugar gets too high or too low he is subject to go into a coma or even death. We/he have to take special care of his feet or he will lose them later on in life. He has some days where he will scream and hit the walls and cry if his sugar is too high or too low. All of this is tearing my heart up. I keep asking God, why? Why him? Why did he get this? I sometimes sit in my room and cry. My 5 y/o son came in one day and saw me crying and said: " I have diabeties, what's wrong with you "? I know he can live a healthy, productive life if we take good care of his diabeties. He was diagnosed in November, 2004 when he was 4 y/o. His blood sugar was over 600 when he went into the hospital. God saved him. When ever I feel depressed and have a problem, I think about my sons life and my problem is no longer a problem. We monitor him closely. We check his sugar 4-6 times a day. He is on a special diet. He starts kindergarten this year and I am worried about him going to school. I know he will be fine, but I cant help but worry. There is an old poem that really helps us in times of desparation. It is called: "footrints in the sand". I feel for everyone who has to live their life with some type of pain, but with the Grace of God, he will carry us all through it. Just wanted to share our story. God Bless you all. jb7ctx

Just wanted to write and say that I do understand what your son is going through as I am also Diabetic. I have been since Sept 2000. I am now 35 years of age and am quite healthy.

One thing my Specialist told me afew years ago was that as long as you can keep your blood sugars under good control there is much less chance of having health problems later on in life. And I do have very good control of my sugars.

When I last saw my Specialist which was only two weeks ago he told me that I was one of his easier patients because I DO keep my sugars under good control.

3 years ago I became pregnant and had to go on insulin fulltime, before being pregnant I was on tablets only, but after finding out that I was pregnant I had to stop taking them as they could have harmed the baby. I was then on insulin until after I had my little girl. I had to give myself 4 needles per day and check my sugars sometimes up to 8 times a day. I had to keep my sugars very low all the time so that my baby didn't end up being too big. And in keep my sugars very low I had alot of Hypos's. And yes Hypo's can be just as bad as having too higher sugars for any one but especially pregnant women.

My baby girl was born fine and after spending 24 hours in Newborn Care to check her sugars she was fine no problems there. After I had Stephanie I was able to go back to tablets and I only have night time insulin.  She is now 3 and doing great, as for me I'm doing fine as well. This coming September I will have had Diabetes for 5 years and so far no other health problems and I hope to keep it that way for many years to come.

In time your son will come to see having diabetes as just part of his life. I have a friend who has lived with diabetes since she was four and yes she does health problems but these are due to her not looking after herself as a teenager.  She told me herself that if she had taken better care during her teen years then she wouldn't have half the problems she's got now.

I hope that this has helped in some way. Just know that your son will be ok and he will live for many years to come and will be a very happy and healthy child as look as he looks after himself. Please TAKE CARE. LOVE KELLY.

 
July 26, 2005, 10:31 am CDT

CHRONIC PAIN

Quote From: momof4gals

I have primary progressive multiple sclerosis. I took care of people with ms when I was a nurses aide but never realized how they felt until recently. I have a whole new understanding of what they were going through.

Heat effects me. Cold effects me. Medication helps but geeze, I get so tired of being tired! Then to add to it the medications don't take care of the problem. Sure they take the edge off but what I would give for just ONE day without a spasm, cramp, electrical shocks etc. Ahhhh, some day maybe it'll happen :)

People don't understand those with chronic pain. I didn't until these past months. People don't understand when we don't want to talk. Socialize. Laugh. People don't understand when we just don't have the patience. Some days I find I'm snappy, or have what others consider an attitude.

I used to get angry at others for making comments etc. But now I'm just thank ful they don't know what it's like. I don't wish chronic pain on anybody.

This is the first time on his web site. I watch Dr. Phil when I can and I always come away with something positive. I also have chronic pain, Fibro and Behcet's auto immune. My co worker sits behind me has Fibro and an auto also. We can talk to each other and it helps us get through the day. We do not complain but talk about our symptons and it helps to know someone else can identify with your pain.  Unless you have chronic pain you have no idea of the pain someone is experiencing. Education is the tool to have the general public and families aware of the enormity of chronic pain.

 

 

 
July 27, 2005, 11:29 am CDT

Living with Chronic Pain

Quote From: sukie45

I have been living the summer from hell.  I have fibromyalgia and I have lived from one flare to the next since early spring.  My dr. is sympathetic and my husband also understands.  I take every supplement that I read about that is suppose to help. 

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics.  I remember one week feeling really up and begining to "feel" my body as a good thing.  the next Monday my knee gave out while on the treadmill.  I found it difficult to use the machines and I kept dropping the free weights.  My dr. told me to lay off the gym until I felt better but my aquabics were ok.  The next week during an aquabics class I found myself fighting to breath and the chest pain was something else.  Back to the dr.  No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee.  As I said my Fr. is sympathetic but I  feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer.  I know there are people my age doing wonderful things but not me.  I am depressed.  I am fat.  I am out of shape.  I am out of hope.

Is there anyone else out there like me.  What do you do?  Please don't tell me to look on the bright side or any other  moronically cherrie euphamisms.

By the way this is one of my good days.

When were you diagnosed with Fibromyalgia and by whom?  I was diagnosed in 1996 by Dr. Franklin Kozin, Rheumatologist with Scripps Clinic in La Jolla, California.  He's the best doctor I've ever found for FM treatment.  He definitely keeps up with the latest info on Fibromyalgia.  From what I've read and what my body tells me, FM sufferers normally don't do any weight exercises because of the stress on the muscles, which may cause them to spasm.  Usually they just say to do aquatics in a warm pool because it's gentle on the muscles.  Are you on any pharmaceuticals for the pain?  Some people refuse to take any meds, but then they can't work either and end up on the couch mostly 24/7.  I DO take pharmaceuticals - quite a few in fact.  It keeps me working and productive which helps me feel better about myself.  Plus, as you've read in other messages, it's d**n hard to get on disability anyway!  I also suffer from Chronic Fatigue, which most people with FM seem to also have.  We recently moved to another house, and I had the worst flare-up I've had in a long, long time.  My muscles ached so bad I could barely get up on my feet.  I had to increase some of my pain meds temporarily.  Because I'm on low doses of several depression meds, I can honestly say that I'm never depressed, just temporarily "delayed" in my life.  I've found things to do that release endorphins in me and so by sticking to those things, I've found it fairly easy to stay in a positive mood.  It sounds like you've found some good things to do in your meditation, keyboarding, painting, gardening and prayer.  Those are all great things to do IF you have the energy that day!

 

Fran

 
July 29, 2005, 10:57 am CDT

FIBRO

Quote From: sukie45

I have been living the summer from hell.  I have fibromyalgia and I have lived from one flare to the next since early spring.  My dr. is sympathetic and my husband also understands.  I take every supplement that I read about that is suppose to help. 

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics.  I remember one week feeling really up and begining to "feel" my body as a good thing.  the next Monday my knee gave out while on the treadmill.  I found it difficult to use the machines and I kept dropping the free weights.  My dr. told me to lay off the gym until I felt better but my aquabics were ok.  The next week during an aquabics class I found myself fighting to breath and the chest pain was something else.  Back to the dr.  No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee.  As I said my Fr. is sympathetic but I  feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer.  I know there are people my age doing wonderful things but not me.  I am depressed.  I am fat.  I am out of shape.  I am out of hope.

Is there anyone else out there like me.  What do you do?  Please don't tell me to look on the bright side or any other  moronically cherrie euphamisms.

By the way this is one of my good days.

THIS HAS BEEN AN EXTREMELY DIFFICULT SUMMER FOR FIBRO. I LIVE IN THE MIDWEST AND HAVE BEEN STRUGGLING. I AM 44 YRS OLD WITH A 13 YR OLD AND 4 GRANDCHILDREN AND I STRUGGLE MOST DAYS. I TOO AM OVERWEIGHT (30 LBS) AND TRY TO GET IT OFF. MOST OF THE MEDS I TAKE CAUSE WEIGHT GAIN, SO THERE YOU GO. MY SALVATION HAS BEEN PILATES!!! I DO THE TAPE AT HOME AND IT DOES HELP WITH THE CONSTANT PAINS IN MY LEGS AND KNEES. IT REALLY HELPS MY NECK!!!!!!!!  TRY DO DO ONE THING A DAY FOR YOU AND ONLY YOU. WHATEVER YOU WANT, AND THEN YOU WILL BE ABLE TO GET SOME CONTROL  OVER THIS FIBRO MADNESS. NO ONE CAN UNDERSTAND UNTIL THEY GET IT THEMSELVES. SO WE HAVE TO STICK TOGETHER AND BRING THE AWARENESS TO ALL.
 
July 30, 2005, 5:21 am CDT

Please see link -

Quote From: sukie45

I have been living the summer from hell.  I have fibromyalgia and I have lived from one flare to the next since early spring.  My dr. is sympathetic and my husband also understands.  I take every supplement that I read about that is suppose to help. 

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics.  I remember one week feeling really up and begining to "feel" my body as a good thing.  the next Monday my knee gave out while on the treadmill.  I found it difficult to use the machines and I kept dropping the free weights.  My dr. told me to lay off the gym until I felt better but my aquabics were ok.  The next week during an aquabics class I found myself fighting to breath and the chest pain was something else.  Back to the dr.  No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee.  As I said my Fr. is sympathetic but I  feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer.  I know there are people my age doing wonderful things but not me.  I am depressed.  I am fat.  I am out of shape.  I am out of hope.

Is there anyone else out there like me.  What do you do?  Please don't tell me to look on the bright side or any other  moronically cherrie euphamisms.

By the way this is one of my good days.

http://www.forbes.com/lifestyle/health/feeds/hscout/2005/07/29/hscout527107.html 

 

Forbes.com - Parkinson's Drug Eases Fibromyalgia Pain

By Janice Billingsley
HealthDay Reporter

For myself, I was diagnosed with Fibro. in 94.  It was suggested that the only exercise that I do, was either walking or swimming.  Anything else, is to hard on the body.

 

NOW, by 97, my Dr. then suggested that I have an ANA (blood) profile done.  I'm referring to your labored breathing, and chest pain.  In short, I tested positive, for Lupus.  These two diseases, can mimic each other.  And both are very common these day's.

 
July 30, 2005, 11:42 pm CDT

I'm a 34 year old trapped inside an 89 year old woman's body.

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. 

 

 
August 6, 2005, 10:47 am CDT

Diabetes

Quote From: ceders2

Just wanted to write and say that I do understand what your son is going through as I am also Diabetic. I have been since Sept 2000. I am now 35 years of age and am quite healthy.

One thing my Specialist told me afew years ago was that as long as you can keep your blood sugars under good control there is much less chance of having health problems later on in life. And I do have very good control of my sugars.

When I last saw my Specialist which was only two weeks ago he told me that I was one of his easier patients because I DO keep my sugars under good control.

3 years ago I became pregnant and had to go on insulin fulltime, before being pregnant I was on tablets only, but after finding out that I was pregnant I had to stop taking them as they could have harmed the baby. I was then on insulin until after I had my little girl. I had to give myself 4 needles per day and check my sugars sometimes up to 8 times a day. I had to keep my sugars very low all the time so that my baby didn't end up being too big. And in keep my sugars very low I had alot of Hypos's. And yes Hypo's can be just as bad as having too higher sugars for any one but especially pregnant women.

My baby girl was born fine and after spending 24 hours in Newborn Care to check her sugars she was fine no problems there. After I had Stephanie I was able to go back to tablets and I only have night time insulin.  She is now 3 and doing great, as for me I'm doing fine as well. This coming September I will have had Diabetes for 5 years and so far no other health problems and I hope to keep it that way for many years to come.

In time your son will come to see having diabetes as just part of his life. I have a friend who has lived with diabetes since she was four and yes she does health problems but these are due to her not looking after herself as a teenager.  She told me herself that if she had taken better care during her teen years then she wouldn't have half the problems she's got now.

I hope that this has helped in some way. Just know that your son will be ok and he will live for many years to come and will be a very happy and healthy child as look as he looks after himself. Please TAKE CARE. LOVE KELLY.

I too am a diabetic for 2 years now.It was a strugle for the past year my sugar levels were high even though I watched everything I ate..The first thing I did was a friend gave me a book and I highly reccomened it called " Sugar Busters" a must read book.I was soon to be put on insulin..I asked the doctor to give me 3 months...So I went on line to track everything ( ingredients) in food consumtion.what I found out was shocking....I found a site please check this out the site is as follows 

www.sweetpoison.com there I found the culprit and doctors don't tell you this stuff.My demon was aspertame...I was gaining weight,mood swings,elevated blood pressure,headaches,hair loss by huge amounts,loosing feeling in my legs,sleepy,tired and easily agitated.Well I researched  the website and I elimintaed all products that contain aspertame.My sugar levels were 235 to 300 very high.It has been 3 weeks now since I got off aspertame ,and every morning my sugar levels are 100 - 130 never higher I went off using aspertame of any kind, my hair has stopped falling out,the feeling in my legs are back and no more mood swings and best of all my sugar levels are normal.I use now as my sweetner STEVIA get the soooo lite stevia it taste just like sugar but never raises the sugar level,and it lowers blood pressure.I have in 3 weeks lost 15 lbs and I feel better than I did before being diabteic.Please people always research things NO body knows your body better than you.Please go to the website I have given you and you wil be totally shocked. 

 
August 6, 2005, 10:51 am CDT

Dibetes

Quote From: ceders2

Just wanted to write and say that I do understand what your son is going through as I am also Diabetic. I have been since Sept 2000. I am now 35 years of age and am quite healthy.

One thing my Specialist told me afew years ago was that as long as you can keep your blood sugars under good control there is much less chance of having health problems later on in life. And I do have very good control of my sugars.

When I last saw my Specialist which was only two weeks ago he told me that I was one of his easier patients because I DO keep my sugars under good control.

3 years ago I became pregnant and had to go on insulin fulltime, before being pregnant I was on tablets only, but after finding out that I was pregnant I had to stop taking them as they could have harmed the baby. I was then on insulin until after I had my little girl. I had to give myself 4 needles per day and check my sugars sometimes up to 8 times a day. I had to keep my sugars very low all the time so that my baby didn't end up being too big. And in keep my sugars very low I had alot of Hypos's. And yes Hypo's can be just as bad as having too higher sugars for any one but especially pregnant women.

My baby girl was born fine and after spending 24 hours in Newborn Care to check her sugars she was fine no problems there. After I had Stephanie I was able to go back to tablets and I only have night time insulin.  She is now 3 and doing great, as for me I'm doing fine as well. This coming September I will have had Diabetes for 5 years and so far no other health problems and I hope to keep it that way for many years to come.

In time your son will come to see having diabetes as just part of his life. I have a friend who has lived with diabetes since she was four and yes she does health problems but these are due to her not looking after herself as a teenager.  She told me herself that if she had taken better care during her teen years then she wouldn't have half the problems she's got now.

I hope that this has helped in some way. Just know that your son will be ok and he will live for many years to come and will be a very happy and healthy child as look as he looks after himself. Please TAKE CARE. LOVE KELLY.

Please read my reply to Cedars 2 has online web site to read..
 
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