Chronic pain management - patients' advice: Part V

Patients share chronic pain management advice

My story is fairly rare, I believe. I have had 8 fusion surgeries since 1992 because of Cancer of the spine. I am fused from S1 to T3 and C7-C6. It has been an amazing journey and we all know it has its good days and its bad. I have been Cancer free for about 13 years now, but it caused a lot of problems with my spine. Radiation on the lower back was also a bigger problem than my surgeon ever realized. It was the cause of a failed fusion that had to be repeated 3 years later. I have so much metal in my body it boggles my mind! I had "flat back syndrome" - I feel lucky to look somewhat normal when I walk now. I do live with chronic pain like many people here and I take Oxycontin and have been for the last 6 years. The side effects are terrible and I wish I had never started. I have tried many times to stop but only managed to reduce the dose. I take Neurontin for nerve pain and anti-depressants which anyone living with chronic pain should really consider.

I have tried many remedies for the pain. I think what works best is pool therapy and mediation. Stress really increases my pain and if I do a focused body scan it relaxes my body and the pain decreases. Keeping busy and resting when you need to (without guilt) is probably the best advice I can give.

From: Beadcrazyrodmama – California, USA

I have degenerated disks from the top of my neck to S1. Just found out I have a tear in L5, and L2 is spilling out all over. I take norco 10/325 and Kadian for pain. I can hardly walk, but will not let the pain keep me down. The best advice I read here was to keep active mentally - keep the depression at bay. I am at my wits end, and finally am thinking about a trip to the big table. One note: you must believe in and trust your pain doc. Be well, as you can see you are not alone out there.

From: oh-myachinback – California, USA

I have a bulged L5/S1 disc and have been in pain since August. I am 28 and an athlete. My doctor has been treating me using the Graston Technique, which is a new treatment for back pain. It has relieved so much of my pain, from a 9 down to a 2. If you can find a doc that knows how to do it, it is definitley worth the time. It involves scraping the muscles in your back with steel tools, that cause the scar tissue to flatten out and move smoothly. It is non-invasive - it is done on the surface. I cannot tell you how much it has helped. After having my MRI read with the prognosis of surgery, I am so thankful I found the Graston technique, and am hoping I can heal up with
this technique.

From: Becca – Oregon, USA

I fell and broke a hinge in my L5 to S1 when I was 18. I used exercise to keep the pain away. Had fusion using brattigan cage, 2 rods, 4 screws. I was told I could have a normal life and resume my job after 4 months. The operation was a success and kept me painless for 4 years. In August 2004 I bent a little backward and to the side and I felt something move in my back. I had pain the next day almost to the point I couldn't walk. I took it easy and it only got a little better. The doctor says I can only get injections as he doesn't see any problems with the implants. Injections did not help me. I went to my family doctor for unrelated reasons. Doc wanted to do a testerone level check on me. Results were 325. The normal range is 200 to 1000. I was considered a little low. He prescribed testim 1% mostly for my lack of love for life. Well after about 2 months on this there is NO PAIN (level now is 529).This went on 1 yr. (maybe a small ache once a month for half a day). I decided to stop taking it because studies show risks of shorter lifespan. Pain took about 2 months to come back after stopping (it's back and just as bad maybe worse). I am considering going back on it, but my doc says I should think of quality of life not quantity.

From: Anonymous - Pennsylvania, USA

I will add my story as I found some of the others inspiring. I had spinal fusion, s-1, l-5, l-5, l-4 and a laminectomy at l- 3. The fusion was done after facet injections, caudel injections, razatomy surgery, and a host of other non-invasive stuff. The surgery was done in 2000. Prior to getting the fusion I had trouble walking, lifting, bending and I was urinating on myself. Not a good thing. I still live in pain most days and took Hydracodone for 2 years. It made me see spiders and stuff and I hated it. I started on Gabitril and Ultram and it has been working for me for the last 3 years. I still have severe pain from time to time but the meds help. I was sent for an FCE by the insurance company in Aug 05 and hurt myself doing what they wanted me to do. Had another MRI last week and it looks like I have some damage done. My pain doctor thinks it is scar tissue but this site seems to dismiss this as a cause. Who knows… I would do the surgery again 'cause even with the pain it is nothing like it was prior to the fusion. I am now having pain equal to the pain I had prior to the fusion and will have more fusion if needed. I recommend trying all the less invasive stuff first it is worth a shot ‘cause fusion is major stuff but get fixed or at least try.

From: Michael – Texas, USA

I am a sufferer of FBS and chronic low back pain with left leg pain for over 8 years. I have undergone a L4/5 nerve root decompression, nerve blocks, spinal epidurals, acupuncture, chiropractic, and a L4/5-S1 fusion with hardware, physio, and hydrotherapy. I am a nurse and this has been a very difficult journey. I have been unable to work and have received counseling for my loss of a career I loved. My family physician has been supportive and referred me to a pain management doctor at my request. He was very supportive, caring, and knowledgeable.

I am now on the Duragesic (pain) patch, Gabapentin (for my nerve pain in my left buttock, radiating down to left leg and foot), Losec, Efexor (for my decreasing depression), Dilaudid (for breakthrough pain), Imovane (for insomnia). There has been a lot of adjusting dosages of medications to see what helps best. There is still room for improvement. I also have osteoarthritis in both knees which with the leg pain makes me limp, so I walk with a cane. Some days it is overwhelming so I go to my favorite room, bring a heated 'magic' bag close my eyes meditate or think of a beautiful scene. It helps me relax and come down a 'pain' notch with deep breathing. It really works.

I also take Tai Chi which is great for stretching, meditating and peacefulness. It gets me out since my co-workers have drifted away. I don't want to become socially isolated. I've learned to take one day at a time and try to do things within my limits to keep my mind busy. Each day is like a surprise package and often I don't like what I get. I try to stay positive even when the pain is bad. I will not give in, but sometimes the pain sure has a mind of its own! I am always looking for new ways to relieve pain. There is a lot of us who need it! Many are undertreated for chronic pain, so we need to speak out!

From: Louise - Canada

Went and picked up M.R.I.'s x-rays from neurosurgeon who did my operation - cervical fusion- and forgot just how much damage I received in the car accident. Wow it's a wonder I can move at all!. Was reading the info on this site and did research on meds. Doc's nurse explained that there are drugs that are used for the BURNING pain of nerve endings. I FOUND OUT THAT....gabapetin (neurontin) WORKS! The Celebrex allows me to use my right arm (the only half way good limb I have)! I took one oxycontin yesterday at 11. A.M. and STILL have NO PAIN!! Almost scary. Still difficult to walk correctly, but I feel soooo much betterjust in the nick of time! Bedridden because of rain and arthritis which I really did not believe I had. The x-rays don't lie. Thanks to Spine-health! God is great, He worked through you to help me when IREALLY needed it. I was at my wit's end! Feel great! I have a great primary and he lets me find the combo of meds. that work. It's taken 4 years of trial and error. Must be careful w/ oxycontin 80 mgs. What is better?... quality of life or quantity ?.. A shorter pain freelife.....is better. I can do things I would notevenconsider before. Just to let you know about GABAPETIN 300 MGS. WOW I can love life and deal w/ disabilities.

From: Eileen - USA

I am 42 years of age and currently suffering from L5-S1, which was diagnosed just few months ago. At first I tried everything from the over the shelf medication, but to no avail. One day I went to the local food store and met a gentleman who watched walk in agony and decided to ask me why. I am an Auto technician and with this pain, it only means a whole career change. This gentleman asked me if I would try his local remedy for lower back pain? I agreed and he gave me the recipe which consists of.

1: Two heaping tablespoons of powdered ginger

2: Rose water - couple of drops or as needed

Preparation: 1: Mix these two ingredients together and watch it becomes pasty. Keep adding drops of Rose water until it is pasty and not too thin or runny. Apply this concoction on a large gauze (enough to cover the affected area) and wrap it around the waist area for at least 30-45 minutes twice a day.

I have been continuing with physiotherapy and yesterday my Doctor informed that with the improvement that he sees, he doesn’t think I need the surgery.

From: Kamal - Quebec, Canada

Just pain pills don’t help when it comes to chronic pain. I use the patch, heat, ice, stretching, massage, electric stimulation, and a good weight control program to name just a few. All of these things work together in aiding chronic back pain.

From: Gy – Florida, USA

I fell at work and herniated two discs. First surgery was unsuccessful and misdiagnosed....missed the far lateral herniation on the MRI. Second surgery helped for 2 1/2 yrs. Now I'm in pain all the time. They're starting to call me Quasimodo at work because I'm bent over most the time. I am planning on going to Germany to get a two level disc replacement at L3/4 and L4/5. I chose the Maverick disc replacement system and I am very optimistic about getting the procedure done. Everyone I've been able to talk to that has had the procedure has had extremely positive results.

From: vbirddogs – California, USA

I was diagnosed with an L5-S1 ruptured disk about 6 years ago. I've had 2 Epidural Steroid Injections which worked for about 6 months each time. What has provided the greatest relief for me twice are short (2 months the first time three years ago and 15 days this summer) prescriptions of Elavil. When my back pain hits, I cannot even walk unassisted. Very low doses changed the pain pathways and allowed me to benefit from the strengthening exercises in Physical Therapy. At first I was upset to take an anti-depressant for my back pain, and I got pretty grouchy on the stuff, but the pain relief started in two days both times. I had two nights of very vivid nightmares after the 60 day course ended, but no such problem on the 15 day course. This was much better than the megadoses of Ibuprofen! Probably worth a try. I was crying from the pain all the time anyway. Now, I maintain my pain relief with daily heating pad time and very careful lifting procedures. The pain is not gone completely, but is usually manageable. FYI - the first time I took it, the written materials with it did not list pain relief as an indication for use, but it is listed now.

From: Judith - Illinois, USA

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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