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Topic : Living with Chronic Pain
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January 2, 2006, 12:59 pm PST
 I am 35 years old and I have been living with chronic pain since I was twelve. I have been diagnosed with degenerative disk disease, bulging discs L4, L5, S1, bone spurring in my c-spine, chrondromalacia patella in both knees, osteoarthritis and fibromyalgia (and all its wonderful symptoms). The last 4-5 years have been the worst of it all.
It was easier to deal with when I was younger. I grew 8 inches between my 12th & 13th birthdays. My muscles were not able to catch up with the bone growth and I started having knee trouble. I was an avid basketball player and dreamed of playing in college. I went to many different ortho specialists, physical therapists with no relief from the pain. I was told many times that if I wanted to continue playing ball, I would have to "live with the pain." That is a phrase that I have heard too many times. I played with braces on both knees throughout high school and college. I lived with the pain, even though it brought me to tears very often.
I enlisted in the Army when I was 21. Financially I could not afford to continue college. I thought that I could earn some money to finish my education and still be able to play basketball. My recruiter was a 6'6" mechanzied infantryman. He told me about how he played for the All-Army team and how he traveled around the world playing basketball full-time. Of course being a basketball fanatic, I thought that would be a great way to serve my country and continue playing hoops. I served 5 years and was medically discharged in 1996 for bilateral wrist pain with no apparent injury or reason for onset. I spent three years of my enlistment going from doctor to doctor (ten in all) trying to find out why I was having intense pain in both wrists. I had every test imaginable (some quite painful) and an arthroscopy in my left wrist that found a lunotriquetrial ligament tear, which they repaired. After the surgery the pain still persisted and paperwork was started for a medical review board to see if I could continue to do my job. The board decided that I was not fit for duty and I was medically discharged with 10% disability for my left wrist. The VA has designated me 40% disabled, (10% for each wrist and 20% for my neck and back).
I returned home and enrolled back in college. With the disability designation from the VA, I qualified for vocational rehabilitation and all my education expenses were completely paid for plus I recieve a monthly disability check. In 1999, I graduated with a BS in elementary education and in 2000 with a Masters in Reading Specialization. I have been teaching reading since Sept 1999. All the while still struggling with chronic pain. The VA clinic bounced me around from specialist to specialist. After I got married and started being covered on my husband's insurance, I started looking for help on my own to see if I could find a doctor that could give me some relief.
In 2002 I was diagnosed with fibromyalgia. Some say it is a "garbage-can" diagnosis because they can't find anything else to call it. But I know that my pain is definately real! I have been on numerous different medicines to try to find a combination to help with the pain. Even gained 70 pounds over a one year period because of one of the anti-depressants prescribed. That has really contributed to even more problems with my worn out joints having to carry around all this extra weight. I've gone from an active, athletic, vibrant 140 pound soldier to an inactive, depressed, and suffering 220 pound mess.
I am currently taking ambien to sleep at night, flexiril to sleep and for pain, tramadol for pain, wellbutrin for depression and pain, protonix for acid-reflux and allegra for allergies. My immune system seems to be going crazy lately. I have had IG-A & IG-G deficiencies, pneumonia seven times in the last 4 years and currently getting treatment for Uveitis in my right eye. I have pars planitis with cystoid macular edema with has caused my vision to be blurred and very distorted. Initial treatments of steroid shots underneath the eye, through the eyelid, have not done the job. Six weeks ago I had a shot of steroid administered right through the white of my eye. This was not a very good experience. It had helped initially but my vision is starting to go back to where it was before the shot. I will need an additional shot or more to hopefully clear up the inflammation and get full vision back.
So that is my story. It is a shortened version with just the wonderful, painful highlights. Sometimes I wonder, if I am in so much pain and despair at this point in my life at 35, what will life be when I am 40, 50.... ? It is hard enough to think about tomorrow and how I will feel.
Thank you for taking the time to read this. I know there are many people out there in the same situation and even worse off than I am. Hopefully there will come a time when people with chronic pain can find relief and live the life that we desire to live.
God Bless everyone, trafick |
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January 2, 2006, 2:37 pm PST
I, too, have been living with chronic pain since the age of 23 due to a motor vehicle accident where my spine was severly injured. I have had numerous surgeries to help my pain, but I really feel all they did was make me worse. Since the accident, I am now 31 and live in constant pain. I have been in and out or work, but now am permanently out of work for the last 3 years. I have been diagnosed with fibromyalgia, chronic fatigue, myofacial syndrome, degenerative disk disease, depression, anxiety, to name a few. I've tried everything my doctors have offered including the spinal stimulator which did not work for me. It's so hard living with this and knowing this is how I am going to spend the rest of my life. It's good to read here what others are trying in order to cope. I can totally relate to others saying that people don't understand since you look fine, etc. I got so depressed when I could no longer work. It's very isolating and I get so tired of people asking what I do for a living and feeling like I have to explain myself. I have even had a few friends make comments about my living 'off the government'. It's very frustrating since they are not in my body and can't feel what I go through. I also have a partner who says they understand and will be there for me forever, but at the same time they don't do much to help around the house since I guess the mindset is I am home all day so I can do it. It's hard to explain when people can't see what's wrong. So it's good reading here and seeing that others feel the same way...although I am sorry you do!
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January 2, 2006, 4:52 pm PST
Quote From: granlgc Hello I am 57 years old and live everyday of my life in pain. I have one of the most misunderstood problems, when you tell others what you have they look at you and say what is that???? I have Fibromyalgia, CFS, MVP with panic attacks. My body reeks with pain all the time, I can hardly walk and I can't stay in one position for very long at a time, which means sleep is disrupted many times during the night. I have had depression since I was 14 years old. I am very sensitive to others problems and think I can solve or help. If someone acts disrespectful I hurt to the bone. Why can't I just be more agressive and stronger so that I don't have to suffer so.
Unhappy gran I, too, am in my 50's and was diagnosed with fibromyalgia in 1999. At that time I could barely walk and was in pain constantly. All I wanted to do was sit in the recliner and not have to move. I also had a chronic lower back problem due to a very bad accident on an interstate in 1992. I was floored when I received the diagnosis. I have been on every medication imaginable- narcotics, sleeping medications, anti-depressants, muscle relaxants, and even a medication used for MS- all at the same time. But the pain just comes back every few hours, so I'd pop another pill. I went to a a pain specialist and tried acupuncture which did help, but not enough. I started seeing an osteopath who is my hero as he can keep my lower back pain under control with a monthly adjustment. A year ago my psychiatrist put me on Cymbalta which seemed to help. Last summer, I decided I was taking way too many medications, so started going off them one by one. Now, for the fibromyalgia, all I take is Cymbalta and I recently had the dosage increased. But what has helped the most has been working out with a good trainer who spends the last 15 minutes of the hour doing active stretching with me. That has made a huge dent in the pain. I also walk outside or on a treadmill several days a week. The exercise alone boosts my mood. I have massages on my upper back as it is the area of my body that causes me the most problem. I would have to say that I am at least 80 to90 percent better than I was when I was diagnosed. I have become convinced that emotions play a central role in fibromyalgia and have gone to counseling in order to try to work through some issues. I have also learned to say no- a word I never used before. My family was initially a bit shocked when I started using that word, but they now know I mean it and why. If I'm having a particularly bad day- and I do have some on rare occasions- I just let everyone know that I'm not up to par and to not expect me to do much but take care of myself. Weather seems to affect my pain as well. I can tell when a front is coming through. I started sleeping on a heated mattress pad and a swedish foam bed topper- that really helped in the beginning. I even travel with the bed topper as sleeping in a different bed is a nightmare for me. Since my upper back is my problem area, I keep it well covered in winter months. You say you are very sensitive. So am I. I spent years doing what ever it took at home to keep the peace. That was a mistake. I have learned to stand up for myself and not try to solve every one else's problems. If I can't do it, I just say no. It's taken me several years to get to this point and I'm still working on it. Most of the literature I've read seems to indicate that fibromyalgia patients don't get better. I disagree. I really believe you can at least manage the pain- and possibly not through traditional medicine; and I'm a nurse. |
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January 2, 2006, 5:11 pm PST
well, last spring I had my annual physical to include a complete cardio workup, and found I was the picture of health despite constant chest pains. after the physical, I ask the doctor to give me a cortisone shot in my right elbow for 'tennis elbow' which she did......first with a dull needle, then she got a sharp one and gave me the shot. I got no relief in my elbow, and about 5 days later something hit me so hard.....I was in severe pain in every inch of my body. I could hardly walk, it was in my feet, ankles, both elbows, and all my muscles. my leg muscles especially would cramp up when I was trying to relax in my recliner. I was taking 2 percocets every 4 hours just to be able to half way function and stay at work. They were taking blood to test every two weeks, they were checking me for Lupus, Lyme's, Rheumatoid Arth., hepatitis, thyroid, and even syphillis........everythign came back negative. after two months, they finally did more blood test and I got a note in the mail and a prescription and they told me I was positive for Rocky Mountain Spotted Fever! I never had any rash, and never found a tick on me at all, though I took the Doxycycline for a month anyway. I improved somewhat, but still had the muscle and joint pain, my muscles always felt as if I had worked out and had the soreness in them. my elbows were the most tender of all my joints. I would get better a few days and then have a flare up a few days. I was sent to the UNC hospital in Chapel Hill,NC to a rheumatologist. He took 5 tubes of blood and xrays of my hands and feet, and a week later he told me I did not have rheumatoid or osteo arthritis at all. I went back to my doctor, who did the pressure point test and told me I did have Fibromyalgia, but she still thinks I have something else going on with my joints.......so, where does that leave me? Still in pain in my muscles, my elbows are so tender and stiff, that just brushing against something is pure agony! The doctor says she thinks FM comes from the lack of restorative sleep, and since I have not been able to sleep well, and wake up more tired in the mornings than when I went to bed, she has me on Pamelor 25mg and Melatonin 3mg at bedtime. the first two nites I slept great, and actually felt better the next day, but after that I am back to waking up several times during the nite and waking up tired and sore. my body hurts from just laying on the bed. I take percocets when the pain is unbearable, but usually try to just grin and bear it, because I don't like the way they make my head feel. I keep working because I have to, my husband is already disabled and lives 24/7 with severe chronic pain of his own, so my job keeps us in insurance. I have two older sisters, one was dx'd with RA years ago, but she has not developed the deformity of RA and she thinks hers is more Fibro too, and my other sister was diagnosed with fibromy several years ago. I have a niece that has been diagnosed with fibro too in her early 20's but she also has MS and several other medical problems. I just can't help but wonder if it is all fibromyalgia, of something hereditary that doctors just have thought to look for, that has afflicted the females of my family. Fibro or not fibro, that is the question! I am just so frustrated right now, I am so tired of hurting all the time. Fibromyalgia is I think one of the most misunderstood medical ailments around.......I sure dont understand it, and I still tend to want to think Fibromyalgia is what they call body pain when they dont know what else to call it. I have been trying to research it, and learn more about it. Well, thank you all for letting me vent all this out of me, I think this has done me about as much good as anything. |
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January 2, 2006, 5:58 pm PST
Fibromyalgia-
What a diagnosis!
I will be 39 this month, and was diagnosed in 1992. Back then it was termed "fibromyositis" and I called it "my imagination." Most people at that time, including doctors, really didn't think there was anything wrong with fibro patients other than depression and anxiety. Even now, I see the commercials "Depression hurts" telling people that their aches and pains should be attributed to depression. So, the drug companies want to claim that if you just take their antidepressant, you will be pain free. Hooray! Give me one pill that will take my pain away, and I'll take it. Is it going to be free of side effects too?
Well, my motto is WHEN I'M NOT HURTING, I'M NOT DEPRESSED.
When you have a painful flare up that hits you like a ton of bricks, and lasts for weeks at a time, for no apparent reason; well HECK! It sort of gets a little depressing!!!
I am a very active, functional adult. I homeschool 4 of my 5 kids, keep up with a busy schedule, make home cooked meals for my husband and kids, and volunteer in many activities in my community and church. Do I sound like someone who is sitting on the couch all day feeling sorry for myself and being in a state of depression? NO.
BUT, I am in constant, frustrating sometimes nearly overwhelming pain. I try to live a life as normal as possible, but I do it while taking pain pills, sleeping pills, antidepressants, muscle relaxers, anti-anxiety meds, as well as prescription Ibuprofen and the occasional Tylenol!!
I feel like a walking pharmacy, and hate hate hate fibromyalgia and the way it makes me feel. But NO ONE is going to convince me that I'm hurting BECAUSE of depression. I get very depressed when I have gone for weeks in a flare up. Yes, there are some times that I have to back out of committments and will shy away from friends and family. However, I do that because I don't want to be constantly complaining, and when I'm in a bad flare up, I don't have much else to say.
On good days, when I can skip a few doses of pain pills, I practically shout from the roof top! I tell my husband and friends all about the fact that I'm having a good day, and I wish so much that every day could be a good day!
Right now I'm in a flare up, so I am doing a little bit of venting here!
It is sad to live with something that is so misunderstood. I honestly believe that one day someone will isolate a gene or a bacteria or something and we will know for sure what is causing this disease.
One thing that frustrates me is, here is this huge group of people who have almost exactly the same symptoms. In all of the women, the symptoms go away during pregnancy, and are exacerbated during PMS.
You go to a fibro message board and it's like reading your own life story over and over again. Yet, when we are diagnosed, we are immediately an antidepressant, and are co-labeled with diagnoses of depression and anxiety. These docs seem to feel required to label us with mental health issues if they are going to diagnose fibromyalgia! That way it's the patient's fault, NOT a lack of medical research!
I could go on all day about chronic pain and the lack of belief in it's sufferers. I would give 5 years off of my life span to live a life free of chronic pain.
NOW, I will have to say, one thing that does help more that anything else, is when I am able to do Pilates every day. It is wonderful to be flexible and keep my muscles stretched. I sometimes have to go for weeks without my workouts because the pain and fatigue are too intense. Whenever I am able to keep up with the workouts, it really does make a huge difference in my life. I have several different DVD's that I use at home.
It's difficult to tell a fibro patient to excercise. Most of the time the thought of it is nauseating. If you can do a lot of stretching though, it does feel great!
Another thing that works for me is soaking in the tub with Epsom salt. It is great for relaxing my muscles without the muscle relaxer pills.
I don't want to hear from anyone that if I did this or that, exercised more, ate better foods, had more optimism all my pain would disappear!
I'm not overweight, I am not sedentary, I eat well, live well, and still have pain, pain, pain.
So if they ever have an expert on chronic pain who can tell me something I don't know, I will be excited to hear it all!!
Meanwhile, I will continue to read everything new I can on fibromyalgia and live the best way I know how.
Patti
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January 2, 2006, 6:44 pm PST
Quote From: bonnie3n8 well, last spring I had my annual physical to include a complete cardio workup, and found I was the picture of health despite constant chest pains. after the physical, I ask the doctor to give me a cortisone shot in my right elbow for 'tennis elbow' which she did......first with a dull needle, then she got a sharp one and gave me the shot. I got no relief in my elbow, and about 5 days later something hit me so hard.....I was in severe pain in every inch of my body. I could hardly walk, it was in my feet, ankles, both elbows, and all my muscles. my leg muscles especially would cramp up when I was trying to relax in my recliner. I was taking 2 percocets every 4 hours just to be able to half way function and stay at work. They were taking blood to test every two weeks, they were checking me for Lupus, Lyme's, Rheumatoid Arth., hepatitis, thyroid, and even syphillis........everythign came back negative. after two months, they finally did more blood test and I got a note in the mail and a prescription and they told me I was positive for Rocky Mountain Spotted Fever! I never had any rash, and never found a tick on me at all, though I took the Doxycycline for a month anyway. I improved somewhat, but still had the muscle and joint pain, my muscles always felt as if I had worked out and had the soreness in them. my elbows were the most tender of all my joints. I would get better a few days and then have a flare up a few days. I was sent to the UNC hospital in Chapel Hill,NC to a rheumatologist. He took 5 tubes of blood and xrays of my hands and feet, and a week later he told me I did not have rheumatoid or osteo arthritis at all. I went back to my doctor, who did the pressure point test and told me I did have Fibromyalgia, but she still thinks I have something else going on with my joints.......so, where does that leave me? Still in pain in my muscles, my elbows are so tender and stiff, that just brushing against something is pure agony! The doctor says she thinks FM comes from the lack of restorative sleep, and since I have not been able to sleep well, and wake up more tired in the mornings than when I went to bed, she has me on Pamelor 25mg and Melatonin 3mg at bedtime. the first two nites I slept great, and actually felt better the next day, but after that I am back to waking up several times during the nite and waking up tired and sore. my body hurts from just laying on the bed. I take percocets when the pain is unbearable, but usually try to just grin and bear it, because I don't like the way they make my head feel. I keep working because I have to, my husband is already disabled and lives 24/7 with severe chronic pain of his own, so my job keeps us in insurance. I have two older sisters, one was dx'd with RA years ago, but she has not developed the deformity of RA and she thinks hers is more Fibro too, and my other sister was diagnosed with fibromy several years ago. I have a niece that has been diagnosed with fibro too in her early 20's but she also has MS and several other medical problems. I just can't help but wonder if it is all fibromyalgia, of something hereditary that doctors just have thought to look for, that has afflicted the females of my family. Fibro or not fibro, that is the question! I am just so frustrated right now, I am so tired of hurting all the time. Fibromyalgia is I think one of the most misunderstood medical ailments around.......I sure dont understand it, and I still tend to want to think Fibromyalgia is what they call body pain when they dont know what else to call it. I have been trying to research it, and learn more about it. Well, thank you all for letting me vent all this out of me, I think this has done me about as much good as anything. Having lived with fibro for almost 7 years I have reseached it extensively. The most helpful information I found was in Fibromyalgia Network, if I remember it correctly. You can subscribe to it- I think it comes monthly. I stopped my subscription several years ago. You can also buy back issues with specific topics. You can find the site online. I found it very useful in the beginning. Sleep studies have found that almost all FMS sufferers have what is called a Stage 4 sleep disorder. Apparently Stage 4 of the sleep cycle is the restorative stage of sleep which means our bodies rarely get repaired. As I said in my reply below, I was on massive medications for a long time. I decided to stop them one at a time last summer. I only take Cymbalta now. I don't feel any worse being off all the drugs. Exercise, massage and a wonderful osteopath have been my salvation. I am much, much better now than 7 years ago and I was told it likely would not get better. I also highly recommend therapy or a support group. Good luck to you. |
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January 2, 2006, 9:48 pm PST
Hi everyone, my name is Brigitte. I have read some of your posts and can feel what you all are feeling. Since I was eleven I have been depressed. Possibly before that time. Now I am 35 years old and have been living with pain all my life. In grade school, my mom was the nurse who checked our backs for scoliosis, I had it and she did nothing about it because we couldn't afford health insurance. So she says. I wrote out suicide notes when I was eleven. I started getting help for my back in high school. The day of my last appt, is when I got in my car accident that started my life over again. Not for the better. I had fibromyalgia, I felt it two hours after the accident, right between my shoulder blades. $35,000 later my doc gave me the news and put me on pills and therapy. My therapist told me to be mad. It was better than being dead. Then I agreed with her, now I am so mad I can't focus on the good things in life when they happen. My personality has changed so dramaticly I don't know who I used to be. My doc says that now I can be whoever I want. My question is, HOW? Right now, is the worst I have been in about 6 years. I have severe depression so bad I have a problem with my feelings for my 6 yr old daughter. I can look at her and not feel the love I know I feel for her. It's like being on the tip of your tongue. I stopped smoking a few months back and that didn't make anything better. My panic attacks came back and I started screaming at my child which is something I didn't do before. I have been off antidepressants for over 9 years now and this week I almost called my doc to put me back on them. I do take Ambien 10 mg, which will probably be going up soon, and prilosec.I get the side affects of most medications so I can't control my depression with anything. Maybe I should start smoking again. My biggest problem is that I live in Wisconsin. I am hypersensitive to heat and cold. I can't go outside and do anything when it goes below 50 degrees. Wrong place to live, huh? I also have a hypermobile pelvis, the ligaments surrounding my hips are too long and make my pelvis snap out of joint. That is more painful than the fibro when it happens. I am a full time student going for corrections, lately my cognitive abilities have been shot to he**. I can't concentrate, speak clearly, or remember anything. Try taking a test with that. I also have a protruding disc in my lower back and carpal tunnel in both hands. I have gained 45 pounds recently because of my health and don't know what to do to make it better. I have no will power whatsoever so that puts a damper on things. The problem I have with the excercise guru shows like Biggest loser, Oprah, and yes, Dr. Phil is that they are geared towards people, who are in most cases, healthy. I can't excercise like regular people. Why can't they come out with a video that will help me and not put me in more pain than i'm already in. What am I suppose to do. If I sat on the floor I wouldn't be able to get off it, so I don't sit on it. Sorry for venting. Sometimes it's all i have. My family doesn't understand me or what I am or have. I am too opiniated for most. Thanks for listening. Brigitte |
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January 2, 2006, 10:02 pm PST
Sorry, I forgot to ask something in my first post. Anyone with fibromyalgia get any phobias with their disease? In the last four or more years I have been afraid to drive. I got my fibro from a car accident but I don't think that is where this is coming from. I live in Superior WI which is connected to MN by bridges. I have a huge problem driving over those, so I don't. My dad lives 100 miles away and I can't drive to see him which isn't good for me or him or my daughter. I believe it has to do with my car and not being able to afford to fix it if it breaks down. Of course I am afraid of getting in an accident but its been fourteen years and it has only gotten worse. It must be age. JK When I have to drive anywhere outside of my "safe zone" I tense up so bad it makes the fibro worse. Anyone have these issues? Please let me know how to deal with these. Thanks |
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January 3, 2006, 2:21 am PST
Quote From: patti_mom5 Fibromyalgia- What a diagnosis! I will be 39 this month, and was diagnosed in 1992. Back then it was termed "fibromyositis" and I called it "my imagination." Most people at that time, including doctors, really didn't think there was anything wrong with fibro patients other than depression and anxiety. Even now, I see the commercials "Depression hurts" telling people that their aches and pains should be attributed to depression. So, the drug companies want to claim that if you just take their antidepressant, you will be pain free. Hooray! Give me one pill that will take my pain away, and I'll take it. Is it going to be free of side effects too? Well, my motto is WHEN I'M NOT HURTING, I'M NOT DEPRESSED. When you have a painful flare up that hits you like a ton of bricks, and lasts for weeks at a time, for no apparent reason; well HECK! It sort of gets a little depressing!!! I am a very active, functional adult. I homeschool 4 of my 5 kids, keep up with a busy schedule, make home cooked meals for my husband and kids, and volunteer in many activities in my community and church. Do I sound like someone who is sitting on the couch all day feeling sorry for myself and being in a state of depression? NO. BUT, I am in constant, frustrating sometimes nearly overwhelming pain. I try to live a life as normal as possible, but I do it while taking pain pills, sleeping pills, antidepressants, muscle relaxers, anti-anxiety meds, as well as prescription Ibuprofen and the occasional Tylenol!! I feel like a walking pharmacy, and hate hate hate fibromyalgia and the way it makes me feel. But NO ONE is going to convince me that I'm hurting BECAUSE of depression. I get very depressed when I have gone for weeks in a flare up. Yes, there are some times that I have to back out of committments and will shy away from friends and family. However, I do that because I don't want to be constantly complaining, and when I'm in a bad flare up, I don't have much else to say. On good days, when I can skip a few doses of pain pills, I practically shout from the roof top! I tell my husband and friends all about the fact that I'm having a good day, and I wish so much that every day could be a good day! Right now I'm in a flare up, so I am doing a little bit of venting here! It is sad to live with something that is so misunderstood. I honestly believe that one day someone will isolate a gene or a bacteria or something and we will know for sure what is causing this disease. One thing that frustrates me is, here is this huge group of people who have almost exactly the same symptoms. In all of the women, the symptoms go away during pregnancy, and are exacerbated during PMS. You go to a fibro message board and it's like reading your own life story over and over again. Yet, when we are diagnosed, we are immediately an antidepressant, and are co-labeled with diagnoses of depression and anxiety. These docs seem to feel required to label us with mental health issues if they are going to diagnose fibromyalgia! That way it's the patient's fault, NOT a lack of medical research! I could go on all day about chronic pain and the lack of belief in it's sufferers. I would give 5 years off of my life span to live a life free of chronic pain. NOW, I will have to say, one thing that does help more that anything else, is when I am able to do Pilates every day. It is wonderful to be flexible and keep my muscles stretched. I sometimes have to go for weeks without my workouts because the pain and fatigue are too intense. Whenever I am able to keep up with the workouts, it really does make a huge difference in my life. I have several different DVD's that I use at home. It's difficult to tell a fibro patient to excercise. Most of the time the thought of it is nauseating. If you can do a lot of stretching though, it does feel great! Another thing that works for me is soaking in the tub with Epsom salt. It is great for relaxing my muscles without the muscle relaxer pills. I don't want to hear from anyone that if I did this or that, exercised more, ate better foods, had more optimism all my pain would disappear! I'm not overweight, I am not sedentary, I eat well, live well, and still have pain, pain, pain. So if they ever have an expert on chronic pain who can tell me something I don't know, I will be excited to hear it all!! Meanwhile, I will continue to read everything new I can on fibromyalgia and live the best way I know how. Patti Godo to read that I am not alone. I was diagnosed abotu 3months ago and as a single mom in college full time, I am finding it very difficult to cope right now. I have basically been in a flare for 10 month now. For 6 weeks I had to send my daughter to live with my parents. I just couldn't do anything.
In school, I am having an exceedingly hard time with other people. I was bright, bubbly and helpful last year, and now I am in so much pain that I can barely function when I am at school. But because I don't look sick, people think I am faking it, or 'milking' the diagnosis for sympathy. I don't want anyone's symapthy, I just want my life back! I get a lot of people telling me to exercise more, or don't eat this, or eat more of that... With exercise, I do stretch and do light pilates with the ball, but if I go even a little over my limits I am practically bed ridden for several days. Trying to figure out with my doctor what meds will work for me. So far no real luck there. I am so exhausted all the time, but sleep sporatically. My memory is declining. I have to write everything down or its gone.
I hope this flare ends soon... I can't bare it anymore :( |
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January 3, 2006, 5:51 am PST
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. Your not alone. I have had RA for 15 years. I'm 49 and walk like I'm 100. When the doctor first told me I had it in my hands. He gave me meds and it went away. I was young and didn't understand how bad this gets. Wow I know now. My husband is great. He helps me as much as he can. I have four kids that try to help. But you know how kids are, they love to leave a mess and say I'll get it later. My family loves to make jokes about it, like wheres your wheel chair and hey cripple. When they leave I cry. I don't go to anything with the family anymore because I hate what they say and the way they look at me. We had 4 wedding last year and because I have trouble getting dressed and I can't wear shoes(only sneakers) I didn't go. Most of the time I stay in the house. Forget working. But like you said I try to keep a smile on my face and do whatever I can during the day. I try not to think about all these meds I'm on and how scared I am everytime I have to take them. Just keep telling myself that someday they might start working on this pain. You have a good day and keep smiling. God bless. |
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