Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@drueann

Mayo Clinic Info new experience for me-
been treated for severe bursitis with cortisone shots (both hips)–think trauma from shot in one leg (modest residual lymphedema from 5 year old mastectomy) resulted in extensive swelling in ankle/foot. Swelling is down, now have pain in that foot–feels like I am walking on potatoes and have extensive cramping. Is there something I can do to relieve this?

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Hello @drueann, welcome to Connect. Thank you for sharing a little about yourself. Here are a few conversations happening elsewhere on Connect that might help you get started:

– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq (while it may not be the same type of foot pain you are dealing with a lot of members talk about how they deal with foot pain)
– Swollen foot, http://mayocl.in/2ky8JwC

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@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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@rsuda
Robin, I’m sorry for the pain you’re living with. I have chronic peripheral neuropathy pain and burning in my feet, and I’ve tried every medication available for it. Some, especially Lyrica, had side effects, and none helped. I’m going to have a spinal cord stimulator implant in the next few weeks, and I really hope it helps. Most peripheral neuropathy is associated with diabetes, but I don’t have diabetes.

Some of my siblings have had neuropathy, and medications have helped them. All 5 of them have had back surgery. I’m glad I escaped that, though I had compression fractures in T12 and L2 from a 12 foot fall, from which I’ve recovered. I’m seeing a great pain specialist, just started therapy for depression and anxiety and suicidal ideation, and I’m supposed to see a neurologist to see if I have MS. I have a team of doctors who are working together to help me. I’m thankful for them, and I’m thankful for the church we attend and for a pastor who’s experiencing his own share of medical issues (cancer) and depression. I’ve found support groups to be a great help to me. I participate in a few here at Mayo Connect, and some local depression support groups, and another online group. I surely encourage you to accept the support of the many people in this site. We’re always learning from each other here. Welcome, Robin.

Jim

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@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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Welcome to connect Robin!!!
You are so right!!! Pain is no fun!!! Your positive outlook will help you tremendously. Curious if you have tried any other non traditional treatments such as Biofeedback, Acupuncture and Raki? All have great benefits and each work in their own unique ways.

Blessings
Dawn

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Welcome to Connect @drueann!! So happy you are here. You posed a few thoughts for me. First and foremost cramping. Ouch!!!! I have this plenty. Here is a link with some great information on causes and some symptom relief ideas. http://www.mayoclinic.org/diseases-conditions/muscle-cramp/symptoms-causes/dxc-20186052

Have you talked with your doc about your complications?? I would highly suggest a discussion with him/her.

Looking forward to learning more about you.

Praying for pain relief.
Dawn

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Thanks for your interests.

Regarding physiotherapy. I have chronic pain after 17 back and neck surgeries from 1975 to 2016. My lover said the first time she saw naked “You have the longest butt crack ever.”. The trauma of the surgeries was a cause for fibromyalgia and autonomic peripheral neuropathy. I’ve been in pain since about 1984. I was disabled at 53. 1 broken back and 2 broken necks last year with 2 surgeries increased the pain greatly.

My doctors couldn’t diagnose the cause of the falls that resulted in the breaks. Having been a Chemical Dependence inpatient and outpatient clinic treatment program director, I searched the meds I was taking and found it was the ingredients in an OTC sleeping medication I was taking.

Sorry to be long in telling a short story. Doctors don’t e are the only book they’re ever going to read about chronic pain. We are the experts on our bodies. I too have been told to exercise to tolerance but have developed a high tolerance to pain. I go beyond their set limits. You know your body, set your own limits.

I too have used meditation to absorb and accept my pain. I often meditate on Zen Koans while engaged in pain causing activities. Congrats on your observations and advice to us. Each of us need to find and follow our own path. It’s knowing to accept our own limitations but challenging our bodies that works best.

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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

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@lyndamercedes2003

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

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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!

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@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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@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

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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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.

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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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

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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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!

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@granny998

I’m a 69 year old female in the Atlanta area who has severe back/spine problems and am trying to avoid surgery. Standing and walking are painful and I have to sit or lie down after a few minutes. I’ve had the partial nerve blocks in the back, been to a chiropractor (suggested by the surgeon) and am trying to do exercise classes and/or water aerobics. This has helped some but now I’m having tingling down my left leg down to my toes. My balance is getting worse and the pain in my butt/rear area and leg is bothering me more. I’m interesting in others who have had spine surgery and if it has helped their pain.

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@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.

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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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

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@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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@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.

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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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!

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