Chronic Pain members - Welcome, please introduce yourself

Hi,
I'm Lynn. I'm 58 yrs young. I live in Dublin Ireland and work as a musician. I've had bilateral knee replacements which worked a dream and a Diam implant in my spine to help with degenerative disk problem. This also was successful. Now I find myself in awful pain which I'm try to manage temporarily with Oxinorm, prescribed by my consultant. I've done the physio, acupuncture, chiropractic etc things which no longer work for me. My options now, it seems are a spinal stimulator or fusion. I'm looking for help from anyone who has a similar problem and has had one of the above surgeries. I know the stimulator surgery is less invasive but how successful is it. Is there a huge difference between one surgery and the other.
Any help would be much appreciated.
Lynn

Hello @lyndamercedes2003, welcome to Connect. Thank you for joining us from Dublin! You came to the right place to discuss pain and the various ways to cope/manage it with other members experiencing similar things to yourself. We are glad to hear that your knee replacements went well, but sorry to hear that your back/spine is giving you such trouble.

Here is a discussion taking place on Connect that you may want to check out and join in on:

- MVA - motor vehicle accident soft-tissue trauma, http://mayocl.in/2lhUx6H (this conversation contains conversations between members about stimulators

I think posing your question in this discussion also would yield great results. I look forward to seeing more posts from you in the near future Lynda!

@rsuda Hi, Robin. You sound like a good candidate for a spinal cord stimulator. You could at least talk with your pain doctor about it. I've tried the whole list of neuropathy meds, but I've not found one that touched the pain. I'm on Cymbalta 90mg and morphine 30mg twice a day right now. I think the morphine sulphate helps. I wondered if Cymbalta was having any effect, so I tapered off morphine and was off for a few weeks, but the pain was too much, so I restarted morphine. I've been really thankful to have a pain specialist. He's known more options for treating the neuropathy pain than my pcp or the neurologists. I'd love to be out doing more, like you would, but every step hurts. I really need to walk for the sake of our dogs.

@paulbklyn Hi, Paul. I'm a native New Yorker, though I lived mostly upstate. I'm supposed to get a spinal cord stimulator implanted quite soon. I still am not absolutely convinced about doing it, as I haven't heard a great deal of positive reports about it. Could you tell me what your experience has been with it? You said earlier that you've had it in for a few years, I believe. The new ones are MRI compatible, which was an issue with me.

@jjwest Hi, jj. I'm terrible at remembering names, so right now you're just jj. I'm Jim, 66, married, living in Oregon. My primary pain is idiopathic (a word that means they don't know why I have it) peripheral neuropathy. Pins and needles from knees to toes, burning pain all the time in the balls of my feet and my toes. My hands are affected a little, as well, because I have to wear gloves when I drive so my hands don't ache.

A side effect of all the meds I take, along with the various reasons I take them, is ED. My wife and I miss that piece of our relationship. It's been hard on both of us. I think I'll talk more about that in another group, under mental health/suicide survivor.

It's good to read what each of you writes every day. It helps with the feelings of being alone.

Jim

My best friend in high school who i had just renewed a long distance relationship with died suddenly about 4 years ago . She had put together our 45th HS reunion and attended the first night of the 3 day event. When she got home she fell asleep on her couch. The next morning her husband found her unconscious and called 911. In the hospital it took a few days for the diagnosis of a stroke. Then a few days more for the diagnosis of bone cancer. They found it when she raised up on her elbow to greet a visitor and her arm broke! I can't imagine how much pain she had been in for an extended period of time while she continued to work on the reunion and live her normal life. I never got to visit her as they kept moving her to different areas of the hospital (and I lived 70 miles away) making communication in a timely way hard. I was about to finally visit her after 2 weeks, when another friend told me she had passed away early that morning. I was in complete shock. I still can't understand how it could have happened that no doctors found her disease prior to it killing her, and how she could ignore the deep pain of bone cancer without complaining to her doctor. If anyone can help me understand this I would like to hear from you. I feel like a whimp now when I complain about my pain from a herniated, slipped disk, which is pinching my spinal cord. Thanks, Gail B.

I appreciate your contribution to this group @hosta, while having made the choice to suffer the pain in your life. It's bad in my opinion that you have to make that choice. I hope that someday there will be a way to treat both problems without creating increased difficulty with one or the other. Thanks, Gail B

I used to be concerned about my brother getting addicted to his pain medications. He has chronic back pain and has had lumbar surgery. Now that I have had outpatient lumbar surgery and am facing another major lumbar surgery with rods and screws involved, I understand what he was going through for years. I too was recently assigned a pain doctor (October, 2016) and am on pain medication. Right now I am taking Baclofen, 10 mg x3; Tramadol 40 mg x4; and just added Gabapentin, 300 mg x2 daily. I decided that it doesn't matter if I become addicted /dependant on the medications since my doctor said this will probably continue for the rest of my life.

I have have taken Oxycodone, 5 mg x4 previously for a short time, but it didn't seem to touch my pain. The pain doctor changed me to Tramadol, but I am beginning to have lots of breakthrough pain now, so I decided to try a topical pain reliever. I chose Capsaicin 1.5% due to a sample being sprayed on my hand at a store. I have used the rub for 3 days now, twice a day, and remarkably, it is working on the pain running down my right leg, to my knee, then to my ankle and toes. I have had constant pain in my knee and thigh in particular, and the Capasacin works great on it. It doesn't work on the deep pain when I try to go up steps or put any pressure on my leg. However, for what it does work on, I have tremendous relief from the constant excruciating pain I was experiencing. I can hardly believe no doctors have recommended trying this form of relief before.

Anyway, my point here was to say that I'm not worried about addiction anymore. I'm 68 years old and need some pain relief! My grandmother would really have appreciated it since she went from 5'7" to 4'11" after she broke her back. This was in the 1950's so I'm sure she never had meds and she must have endured dramatic back pain. In fact, after she broke her hip in 1966, they put in a pin to hold it together. In about 1985, the pin had worked its way through her muscle and skin and was poking outside before she reported it to her doctor. They did her first hip replacement at that point. I can't believe how much pain she must have been in with no medication!

@granny998, I don't know yet how many responses you have had to your comments. I am 68 years old and in October 2016, I had an acute lumbar attack in which my husband had to rent a wheelchair in order for me to get to my spine doctor. I had already been diagnosed with spondylosis, degenerative disc disease, and a bunch of other spine problems. I was actually in Denver on a consulting job that required weekly trips home to southern California, then lugging my suitcases back to Denver after each weekend. I'm sure that is what led to my acute situation. When I saw my spine doctor they ordered an MRI, which i had the next day. It revealed a badly herniated L5-S1 that required outpatient surgery which I had in December. That surgery has gone beautifully with immediate relief of pain. However, my L4 still requires surgery that will be a major surgery. It is 7.3 mm out of alignment with my spine and is impinging my spinal cord which causes great pain on my right side. The stenosis in my back is causing my sciatic nerve to be constantly stimulated causing so much pain. I am currently taking Tramadol 40 mg x4 /day; Baclofen 10 mg x3 /day; and my pain doctor just added Gabapentin 300mg, x2/day. I also just began using OTC Capasacin 1.5% for relief of some topical pain. It's working great, but doesn't touch the deep pain when I put pressure on my right leg to climb stairs, etc.

I recommend that you find a reputable spine surgeon and follow their recommendations for testing and diagnosis. Find someone who a friend or family member has used and then research them online to find out their ratings as a surgeon and the number of successful surgeries they hav had, etc. Let us know the results.

There's a stronger Capzasin, higher strength. I have tried it, with not much effect. It was suggested by my pain doctor. Lidocaine does numb the neuropathy pain enough to get to sleep. The doctor mentioned a Capzasin treatment that's done monthly, I think, in the office. If the OTC helps, maybe this other treatment would give you even more relief.

Jim

@gailb Hi Gail. I am so, so sorry for your loss. My grandmother died in s similar fashion many years ago. We thought she fell and broke her hip. My Uncle (her son) was a doctor. She was rushed to the ER and not much later, we got the disturbing news. What actually happened is that her hip broke first, and then she fell. The bone cancer was already that bad and too far gone. She passed a few months later. She was 78. The thing is, she never complained! She thought she just had arthritis and had to "deal" with it. Up until the time of diagnosis, she had appeared robust and well. She never stopped doing her daily activities, including riding the bus to go to the grocery store. She was an extremely independent woman who seldom, if ever, asked for help. I do not understand, either, how the disease could have gotten so advanced (even back in 1979) without doctors having no clue! And how she handled the pain was totally beyond me. At the end, she was on morphine; but up to the time of diagnosis, she occasionally took some aspirin! I have Rheumatoid Arthritis, Fybromyalgia, Sojourn's syndrome and spinal stenosis, and I have a difficult time dealing with the pain. It is kinda scary. I never take for granted that a new pain or worsening pain is a sign that it is just one of my diseases progressing or acting up. I always report new or worsening pain to my doctors. I think it is wise that we all do the same. You are in my prayers during this difficult time.

So where and how does one get these? Especially the lidocaine topical.
And if they can be purchased online or OTC, what strengths do they come in?
Thanks!