Getting support and help for chronic back pain sufferers - patients' advice

Patients share advice about getting support for chronic back pain

I have RSD among broken throax surgery & herniated disc l-1 to s- 1. I cycle with the giving up and probly would've except I rely on family & friends support. Educate those around you on your illness so they know. I know what hell is pain every min. of my life. I'm single parent son just turned 18 my motivation because he needs me. I use meds demerol(allergic to morphine), hydrocone & neurontin. I use a compound made with lidocaine,ketamine & buvicaine it helps some when nothing else does but I use more than recommended. Bad days remember they will pass to bearable in time. Get a good dr. explain it. My dr. said pain will wear your mind & drive you nuts. I was glad at least I haven't lost my mind yet. Journal every day. When you have a bad day go back to a better one & read it, I know it helps me. My depression is a yoyo because I refuse to take antidepressants I used every kind still got deprtessed so gave up on them a few less pills to swallow. Go online check out people worst than you helps your prespectative. I am being tortured 24/7 by this body so I understand. I keep exercising because I'll fall apart quicker if I don't when you feel good try a little each day, 20 min. releases the endorphines in the brain that helps fight pain naturally. Do what you can never, never give up find some thing to live for.

From: Donna – Louisiana, USA

I have suffered from chronic pain many years. I have found that finding others who understand is helpful. Also, if I can get focused on something else to divert my attention, it also helps. This is not always easy as when the pain is uncontrollable it is about the only thing one can think about. Of course, keeping your mind on the healing scriptures from the Bible helps not to despair. Mostly support from others who have suffered or who are suffering is the best remedy outside of my faith. Chronic pain sufferers need to be taken seriously, it is surely a world of its own. My problems have been due to serious back pain. I have three fusions and will undergo another soon in my lower lumbar. I would like to be included in someone's support group for chronic back pain.

From: Margaret Stratton – Texas, USA

I am 42 and my entire spine is shot. Too many probs to list. But I agree with "Respect my Limitations". It is hard for people to understand how constant pain affects a person unless you've been there. To look at me I just look tired most of the time. No matter how often I explain my condition to my family..they just don't get it. I always feel that if I really let them know how bad it is..I will end up alone.

From: Annette - Indiana, USA

Medications are one thing, but a person's spirit and faith and convictions in healing .. Mind over matter.. Laughter... Doing small things that bring joy... Making sure that loving people are around... play a large part in helping the patient with pain. Those around the person should be taught how they can take care and encourage the patient. The patient has to be told to ask for help for things they normally can do for themselves, but at this time, they need a little bit of support until they can heal and do them again for themselves and that they should not feel weak. Everyone needs support when going through a rough period.

I am not a doctor, but I have lost a family member recently. Though I do not have a reason for it. All I know is chronic pain can cause severe depression which, according to my research, MOST able doctors seem to ignore because they are too busy prescribing medications.. and hence the depression goes undiagnosed. Just because the patient is intelligent and can ask the right questions and seems to understand, does not mean they can handle the pain. They may be just better at hiding those things which may seem like a sign of weakness for them. Doctors should be trained to recognize this, but then why does so much of the depression go undiagnosed? If the patient does not talk about it, then the doctor should volunteer the information kindly and gently. There is no competition here. Just because the patient didn't ask should not mean the doctor does not give the information. If the patient always knew what to ask, he would be the doctor now wouldn't he...

Some people can verbalize their pain; others minimize and don't know what to ask for. A trained doctor should automatically question a patient who is going through pain whether and how it is affecting them in other day to day areas of their lives. They should make them aware of the feelings they might have and that they are normal and will eventually go away (with the right support). The patient needs to be taught that if need be, he must ask for help clearly ie... What they might need, a drive someplace, picking up groceries, going to the doctor.. That letting people know small things like this is not a sign of weakness, but just a way to build a support net of help if the need should arise. The need may never arise and that would be great. Those around him need to be taught how to handle the patient's mental state. Even small minimized comments or requests for help should be taken seriously. Or at least delved into. We need to learn to ask questions to the patient, not just wait for him to tell us what he needs. He may not know how.

From: Mindy

I am a 45 yr old woman with chronic low back pain. My pain is most likely related to me being a nurse...lifting, pulling and tugging on people. About 10 yrs ago I caught a woman who was about 6 foot tall, in a faint. She collapsed into my arms...BTW I am about 5'3". Shortly thereafter my back pain developed and has gotten worse ever since.

I have been diagnosed with facet syndrome and arthritis of my sacroiliac joints. I have stomach troubles when I take things like motrin so I do not take them. I am now on extended release morphine. I can now truly say my pain is now controlled. I don't mind taking it cause now I can do the job I love without severe pain! Anytime the weather changed I would be in agony! I can't predict the weather now LOL. I'm lucky to have found a group with similar problems as mine on this site to support me.

From: Anne – Ohio, USA

I control my emotions from chronic pain of the spine, rsd, fibromyalgia and other chronic pain conditions other normal aging conditions and all that goes with them, by keeping myself busy. I have been retired for over 12 yrs because of chronic pain, but I still bead, cook, read, hike, shop, sew, write my biography, and do a daily newsletter 6 mornings a week, for others who also suffer from fibromyalgia, rsd, chronic pain, and other painful conditions. Then I spend a fair amount of time responding to the questions and tears, from all who want to hear from me. This also helps me feel I am not alone in my pain, depression, and fears. I also spend some time each day trying to educate one family member or another on what chronic pain is, what it is doing, to me, and our individual relationship.

From: Barb – Oregon, USA

hey there just a quick background on me: 35yr female hurt january '04 in car crash had emergancy L5S1 discectomy/laminectomy done in june '04. while i can now function as a human being i am still in chronic pain and will be having a fusion done next month. i will be seeing a psychologist on friday to help me with the panic attacks i now have and hopefully help me understand them and the o.c.d it has brought with it. my gp feels i am depressed and has prescribed meds for it but i will be happier talking through my experiences than get medicated. on the subject of medication i have severe reactions to a whole range of different medications so my best form of defense is relaxation and deep breathing and the occasional swear word! my family has been brilliant with my hubby taking a year off from work to take care of me and the six kids who are great kids we have really pulled together as a family which is good as i am a kiwi without family here lol
mind you i do have to stop and think before i react as they didn't hurt me so they shouldn't carry the brunt of it either. as for joe public who says oh bad back get over it take a pill whatever mate until you've lived it just keep it to yourself.

From: Magenta – Brisbane, Australia

I'm a 31 year old man with a heavy labor work past. July 12, 02 I picked a tool box an I turned wrong. Two of my lower disk went out. After going to my Doctor and him telling me nothing was wrong, I knew something was not right. I was blessed when I found my doctor. After he did everything to prevent surgery it was the only thing to do. The surgery was rough, but I could walk, the pain was bearable. But this doctor has had the same surgery he performed on me. He told me the steps to recover and the stages that follow. BUT, the whole key to recover is to FOLLOW the Dr's orders. I did not--I tried to go back to my old job. I fell 5 ft landed on my hip and the pain was killer. I recovered a year later, I went back running heavy equipment. With six months the disk above the fusion were giving out. Just because I did not follow the doctor’s advice. There is life after back surgery, I will be the first to tell you it differs for each person. Simple, take care of your self and let your body heal its on way. A good
doctor does not hurt. GOD BLESS!!

From: D. Killingsworth – Mississippi, USA

My spine surgeon gave me the best advice for coping with chronic pain. He said that I would have to find the fine line between enough activity, and too much, and that I would have to insist that others respect those limits. By remembering that, and keeping my meds on schedule, not just taking them when the pain has gotten away from me, I find that most days, I can keep myself from getting into too much pain. When I need to stop, or lie down, I do, and then may try to do something again later. It limits my life, for sure, but I have come to accept that this is the way it is.

From: W. L. Weidman – Washington, USA

Communicate with others [1] about strategies to get the support you need

* Note: This page expresses the experiences and opinions of patients, not doctors. The Back-to-Back forum is provided because we think people often have very practical advice and insights to share that can benefit other patients who have similar back problems. This section has not been peer reviewed by our Medical Advisory Board, and is provided for your informational purposes only.

If you have questions about your specific condition or treatment approach, please go through this site to read peer-reviewed health information about spinal conditions, diagnosis and treatment options. The quickest way to locate information on the site is to use the “keyword search” located in the upper left hand corner of each page. Also, if you want to talk online with others who may be in a similar situation, please go to the Message Board [2].