Chronic pain management - patients' advice: Part III

Patients share chronic pain management advice

Dealing w/ pain. We all know we will go to almost any length to get relief. The stress of life/losing loved ones, being isolated, choosing so. Fear, post-traumatic disorder, and others that can't handle seeing us this way for years suffering. PITY on us does not help; what helps is a phone call to know someone cares. If we are handling it, why can't they? Use any method that works for you/even a little. Listen to your body, but the MIND is in control. Get the head together and the body will follow. Just got off morphine and use 5 other drugs. At least I get out of bed/but not out of the house. Still alive but not living.

From: Eileen Lindsay, California, USA

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I have had osteoarthritis for 40 years and have 3 ruptured discs: 2 lower lumbar and 1 cervical disc. After 2 lower lumbar excisions and cervical fusion I now have 4 lower lumbar vertibrae that have collapsed. I have traction 80 lbs for 30 minutes twice a week. I feel better for 12 hours or so than I am in acute pain and have trouble walking. I take Ultram 50mg every 6 hours and Lidocain patches 12 hours on, 12 hours off. This helps, but I am not consistent with meds as I don't want to be dependent on meds. I also have polymyalgia rheumatica and giant cell. I have been on predisone 40mg but am weaning off now on 4mg a day. As I wean off the pain is worse. The side affects are diabetes, high blood pressure, and general weakness. I find if I keep busy and don't dwell on my pain, and take the meds I feel better. I am 62 years old and had to give up nursing and go on disability. This bothers me a lot and I wish I could get back to work. I get very depressed thinking I will never be able to work again. I pray I will be healthy in the future.

From: Helen Sirgel, Connecticut, USA

I have tried every conceivable form of treatment for my chronic back pain and I’ve found only one treatment to work: a Duragesic patch (fentanyl). Even though it is a narcotic it is working wonders and I have been back pain free for the first time in over 20 years.

From: Dan Victor

On Labor Day weekend in 1995, I purchased a very unique pair of foot orthotics that helped align and balance my feet, which in turn seemed to help the alignment of my back. From what I have found out, this has relieved pressure on discs in my lower back. I have been essentially pain free ever since. My back used to catch often and I was in severe pain and could hardly move. I have never had a problem since starting to wear the orthotics.

From: Wendall – Hot Springs Village, Arkansas, USA

Four years ago, I was diagnosed with severe stenosis and slipped vertebrae in the lower spine after experiencing chronic pain and paralysis in my legs after standing for a few minutes. When discussing with the doctor about what would happen after the surgery he said I would be doing a lot of walking. I told him my knees were bothering me and didn't think I could do much walking. He told me to get my knees fixed first, which I did. After I recovered from the knee replacements, I found my back did not bother me as much and I can now control the back pain and leg pain with chiropractic and Celebrex. I'm 75 and play golf 4-5 days a week. The new knees are wonderful.

From: Dick Bliss

I had spinal surgery in October 2002. It was fusion with metal implants from L2 to S1. I have had two surgeons tell me that the fusion did not take. A discectomy revealed that I now have a new bulge at L1. The surgery was done from the back. Now, the surgeons want to come in from the front, remove the metal implants and put in new metal implants from L1-S1. The surgery did not help the pain, and I have had no relief from this chronic pain. Anyone who is thinking of this surgery must realize that the part of your spine that is not going to be able to bend due to the metal implants, which puts a strain on the disk above, thus causing a bulge.

If you have as many disks involved as I have, your risk is greater that the fusion will not take; plus, you will need more surgery for the bulge. If I had it to do over again, I would not have the surgery. I am able to manage the pain with exercise, Tramadol with Tylenol and a TENS machine. I keep a journal. I write down all my worries in one column and solutions to try in another column. I also have a part for counting my blessings and recording the good things that happen in my day. I make it a point to thank people for anything they do and to find something positive to say. This keeps the stress and pain down.

From: Dorothy M. – Minnesota, USA

I have been coping with chronic back pain after a failed L5-S1 spinal fusion with bone graph. The only advice I can give is to stay as fit as possible by stretching, walking and eating healthy. I have also found that swimming helps. Stress is a big trigger factor in as much as causing the muscles to tense up and in turn that can cause pain. I have found that meditation is helpful. Massage before bed helps me to sleep at night. I have a great husband who is very understanding and supportive. I choose not to take pain medication for the fact that it only masks pain temporarily, anyway and I like to have my wits about me at all times. I have seen too many people dependent upon medication and have seen it alter their overall personality.

From: Mare

Managing chronic pain on a day-to-day basis is a skill to be learned.

As the diabetic has to take their medication on daily basis to keep well, so, too do people with long-term back pain.

Our daily medication is:
Pacing our daily activities
Stretching and exercising daily
Doing some form of relaxation
Challenging our negative thinking "The glass is half full and not half empty."

These are the basic self-management tools to manage our back pain on a daily basis, but it’s always good to hear about new ones.

Managing back pain can take time, but please remember even the snail made it onto the Ark.

Have a PACING Day!

From: Pete Moore – Chelmsford - England

I have found water aerobics to be a life saver. The buoyancy of the water allows me to do exercises that I could never do on land. It really seems to help!!!

From: Diane – Texas, USA

9 years ago, I suffered back pain after the birth of my daughter (1996). 2 years ago, it got so bad to the point where I couldn't walk anymore ended up in a hospital a few times. I found out that I had degenerative disc disease, an old fracture and a herniated disc, and I had a surgery done 2 years ago. Since the surgery, I had lost 53 lbs due to my exercise program for back pain. I did a lot of walking and changed my eating habits. 1 year ago, I got re-injured at work and lost the strength to do anything. I ended getting depressed and gaining half my weight back.

Now I’m suffering more then ever, so bad that I stay in bed, letting it control me. I have my sister and her husband supporting me to go out and exercise again, which took me awhile. I’ve been up on my feet walking and using an exercise ball, looking through the net, to see what else can help me. I know nobody else can help me, but lots of encouragement and support from those that love me helps. So, if you know someone out there who suffers with the same problem, you should encourage them, take them for 10 minute walk around the block, increase week by week, believe me, it will encourage them. My point is, walking and exercise help! I encourage you!

From: ajmartin – Ontario, Canada

I haven’t found any relief from the epidural injections in my c-spine or in my lower lumbar spine. Really, they gave me more pain. I get relief from physical therapy and Percocet pain medications.

From: stacymathis – Jamestown, South Carolina, USA

I have had 4 surgeries and I am lucky enough to be working full time.I am working on a program of gentle massage twice a week. I also make sure to walk small distances every day, even when the pain is severe.

I also have to agree with the people who meditate or use deep breathing exercises. I find that these chronic pain management techniques not only help with the pain but also, I find they keep me positive and keep my spirits up. Good luck to everyone!

From: Jay - Ireland

I was in a car accident in 2003. We (my mother and I) were hit when we were at a stop in her car and the other car hit us from behind. The pain was basically in several places in my back and shoulder, but there was a severe pain in my spine.I had x-rays and nothing showed. I just recently had a facet block injection for my right hip (which gave a little bit of relief for about 3 weeks). My doctor had not ordered an MRI until after my injection which is scheduled for June. The pain is in the middle of my spine and a year or so later I started having pain in my hips (mostly my right) and just very recently have had pain going down my leg. It’s the same sort of burning, deep pain - a sort of cutting-like pain, like when you wear a tight pair of pants and they cut into you. I really don’t know how to describe the pain, but it is intense.

I use a heating pad for my hip pain and find that an aromatic elixir in the bath helps relax back pain. I am on Oxycontin 40mg and take that 3 times a day.When I still have pain, I add another medication (oxycocet) and just recently started taking my pain pill late at night just before bed or when I wake in the middle of the night. This helps the morning pain. I set up my tea carafe and fill my kettle so it’s easy in the morning. I find that tea helps my stomach from any upset from the medication. If you have a hard mattress and find softer is better and can’t afford a good mattress pad, use a thick soft quilt or comforter. If you like a soft pillow, I find that putting a supportive one under your soft one really helps.I recently had a facet block injection, and even though it lasted only 3 weeks, it did help.When I take my meds, I also find that eating some toast or crackers helps any nauseating feelings you may have.

From: Patrina – Hamilton, Canada

I was 86 years old and had lost complete use of my right arm, with pain and numbness where it didn't hurt. The doctors told me that it was a bulging disc at C3-4, and I went in for surgery. After the surgery, I saw no improvement and, in addition, I now started to get neck pain. After another MRI, the doctors told me I needed to have C4-5 fused. After 3 months (still wearing my hard brace) I saw an ad from a local chiropractor and thought, what do I have to lose? I went to his office and decided to give it a try.He used a technique called the Activator. On the third visit, I removed the brace and he actually adjusted my neck around the fusion. Shortly after that adjustment, I caught myself starting to use my arm again, and with further treatment it was reduced to slight numbness in my finger tips and no neck pain! It's been 2 years and I still have complete use of my arm and am doing great. (Even without continued treatment.)

From: Anonymous – Colorado, USA

Chronic pain management strategies that I have found helpful have included progressive muscle relaxation techniques, with a particular focus on slow deep breathing. I also use visualization when pain is really bad. I try to visualize my painful areas as the flames on a gas burner and use my mind/imagination to slowly turn down the burner. As the flame lowers in my image, so does my pain level. This works for me, and is something that I can use discretely. I also find that walking and mild exercise helps, as does intercourse, even if you think you hurt too much to contemplate such activities.

Mother Nature rewards you with "feel good" endorphins, which not only help your pain, but help your mood and attitude in positive ways. I also think you have to keep a sense of humor.Some days, when I hurt a lot and am quite hunched over, I look at it as an opportunity to get really close and smell the flowers, or to be the first one to spot change that may have fallen on the sidewalk!! Chronic pain is no picnic to live with. A negative attitude will alienate friends and family, and will perpetuate the problems of isolation, depression and feelings of loss that can come when dealing with chronic pain. I sometimes have to remind myself of this, especially if I have been through a particularly bad spell. Your attitude is yours to choose.

From: Brandon - Canada

I was diagnosed with coccydynia after months of frequent spinning classes

at my health club. When I rose from the seat, the pain was horrific. Eventually, it was painful to sit at all. I was also diagnosed with piriformis syndrome and received Botox injections to stop the spasming. Two injections several months apart, along with physical therapy, helped heal the piriformis syndrome. The coccydynia is much more difficult to treat. However, trigger point injections of a steroid gave me long-term relief initially, but after several years of intermittent injections, they were no longer effective. Most recently, a ganglion impar injection of a steroid under fluoroscopy has relieved my coccydynia completely. That was a month ago and time will tell if the pain returns.

After more than five years of suffering, I finally have my life back. Emotionally, I got support from my family, friends, doctors and email contacts from the coccyx.org website. Going for walks, visiting with friends and staying connected was very important because otherwise, I found I could easily isolate myself and fall into some negative self-talk. The chronic pain took a large toll on my outlook on life. Not being able to sit meant I did not want to travel, drive, go to shows, movies or out for dinner. It meant I didn't want to sign my kids up for activities that required driving or sitting.Through it all, I tried to remain positive and hopeful that one day I would be pain free. Keep the faith.

From: Gloria Davidson – Colorado, USA

I had low back pain. They did all sorts of x-rays. They did an MRI, body scan and just a regular x-ray. They didn't find anything abnormal. The chiropractor checked my feet. He said that I have high arches. I saw a brochure he had about high arches. It showed a picture of how your low back looks with high arches. So then I went to the foot doctor here in town and he made a set or orthotics for me. These orthotics are a lot better than you buy in the store. They fit your feet a lot better. I am a lot better than I was.

From: Steve Hansen – Albert Lea, Minnesota, USA

I wanted to say be persistent in getting a diagnosis and treatment. Although I am a nurse, I became very discouraged with the responses from my Primary Care Provider (PCP) when I developed a sudden onset of back symptoms. With the help of other nurses and friends, I was able to find a spine specialist who did appropriate testing and treatment.

Surprisingly, I agreed to an epidural injection that worked. I would never have considered it before. After three months of agony and therapy, I was able to enjoy Christmas. In January, I started the Curves exercise program with no negative effects. The most important message I have is not to doubt yourself when you’re having a problem. Finding the right doctor is so important.

From: Netsy – Pennsylvania, USA

My pain started out in ’96 with a bulging disc. I went to therapy - no luck. Bought a TENS unit - no luck. Had surgery after 3 epidural injections - no luck. They removed the L5-S1 disc, which helped somewhat. In ‘99, they fused it after numerous injections that did not work. I had 4 trigger point injections and 6 epidurals (1 under the x-ray) with no luck, so I opted for a 3rd surgery this past week. They put in 2 rods with wires and a box that send currents to the wires to make it heal quicker and I am in a lot of pain. Noted, I just had it done and am hoping for a better outlook. Good luck to all who are thinking of having the surgeries done.

From: Etta – Douglass, Kansas, USA

I was bending down at work and lifting some mail, and I got this sharp pain. I went to see the doctor and they gave me two sessions of physical therapy, and now I take Skelaxin three times a day and one tablet of Flexeril at night. What really helps me is warm water exercises.

From: Jackie – Eureka, California, USA

I have been helped by massage (provided by a spinal specialist) along with manipulation and stretching exercises under supervision. I've found acupuncture useful to relax me and inhibit muscle spasm during treatment. Trigger point injections were beneficial, but with short term results.

Unfortunately, I haven't really coped with chronic pain. Apart from turning up for treatment, I pretty much ignored that it was happening to me until suddenly I couldn't take it any more and had a nervous breakdown. I have been treated for depression now for some time, but find if I'm low my back hurts more and if my back is playing up, I get more depressed! No win situation. To help with both my pain and my mood, I stay very active; using analgesics to allow me to exercise to my full potential. I set myself goals and enlist the support and encouragement of family and friends. I don't think long-term and try not to reflect on how long I've been in pain.

From: Anonymous

Communicate with others who may be in chronic pain.

* 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.

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