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.

@summertime4

@fourof5zs Thank you for the info. I am not planning on repeated cortisone shots. I know how painful they were in my knew and the foot and hand are bad. I may allow the predisone as I hear it is not bad and does help. He gave me the med pack which is predisone steroid and that helped sooo much but can't do that often. I also have neuropathy and am referred to physical therapy. I haven't started because I wanted to hear what the podiatrist had to say on Wednesday. I love water therapy. I am so tired of pain, swelling, cramps, crying, depression. Al on here know all about it. My sister suggested a cream for neuropathy pain and swelling and I ordered off of Amazon. It is Topricin. She says it works. It just arrived and I am going to try it. Has anyone used this cream? I will let you know how it works for me.

Jump to this post

Let me know if the cream works for you. Just the aspercreme type cream helps,, but does not totally get rid of the pain. I guess mine would be considered neuropathy… burning, stinging.. sometimes what I call biting; a very sharp pain. It is weird to have pain and numbness all in the same area. I have to wear shoes or at least socks to help protect my feet. My right foot is the foot with the neuroma. My left foot I broke my little toe right at the joint a couple of years ago.. so arthritis there. I tripped and fell last September and I broke the toe again… now pain down the side of my foot. I have not made it back to the podiatrist to see what other damage I did.

My 91 year old mom lives with us.. It is very hard to take care of her. We tried a nursing home a couple of months ago and that just did not work for any of us. They did not take care of her well at all.. just basically sat her in her wheelchair and ignored her as much as possible… even when we were with her.. my husband and I had to do the taking care of her there. So rather do that at home. She is having a lot of burning pain in both her feet at night. The cream helps some, but she needs something better. Very difficult to get her in and out of our car. .. harder each time. The transport services are very expensive. I think I am going to have to make her a doctor appointment.. her pain in general is getting worse. She cannot take Lyrica nor Neurotin. She is on Butran pain patches. She has Type 2 Mobitz… slow heart rate… and other health conditions. I think some type of cream is going to have to be the answer. .. I just do not know which one.

REPLY
@fourof5zs

Let me know if the cream works for you. Just the aspercreme type cream helps,, but does not totally get rid of the pain. I guess mine would be considered neuropathy… burning, stinging.. sometimes what I call biting; a very sharp pain. It is weird to have pain and numbness all in the same area. I have to wear shoes or at least socks to help protect my feet. My right foot is the foot with the neuroma. My left foot I broke my little toe right at the joint a couple of years ago.. so arthritis there. I tripped and fell last September and I broke the toe again… now pain down the side of my foot. I have not made it back to the podiatrist to see what other damage I did.

My 91 year old mom lives with us.. It is very hard to take care of her. We tried a nursing home a couple of months ago and that just did not work for any of us. They did not take care of her well at all.. just basically sat her in her wheelchair and ignored her as much as possible… even when we were with her.. my husband and I had to do the taking care of her there. So rather do that at home. She is having a lot of burning pain in both her feet at night. The cream helps some, but she needs something better. Very difficult to get her in and out of our car. .. harder each time. The transport services are very expensive. I think I am going to have to make her a doctor appointment.. her pain in general is getting worse. She cannot take Lyrica nor Neurotin. She is on Butran pain patches. She has Type 2 Mobitz… slow heart rate… and other health conditions. I think some type of cream is going to have to be the answer. .. I just do not know which one.

Jump to this post

@fourof5zs Good morning. You are inspiring in your efforts to give your Mom the very best care that you can. I just have a couple of suggestions. First, have you asked your mom's medical provider for recommendations. Is it possible for her to go to a pain clinic? And if I may, would you please tell me where you live. There may be other choices depending on your location. I am here for you. Find joy today. Chris

REPLY
@artscaping

@fourof5zs Good morning. You are inspiring in your efforts to give your Mom the very best care that you can. I just have a couple of suggestions. First, have you asked your mom's medical provider for recommendations. Is it possible for her to go to a pain clinic? And if I may, would you please tell me where you live. There may be other choices depending on your location. I am here for you. Find joy today. Chris

Jump to this post

@artscaping Thank you. She has been seen by several doctors. Not much anything else medication-wise they can do. She had a toradol injection a couple of weeks ago and it helped some. I do not know how often she can have them. She had physical therapy after her 11 day nursing home stay and she did not respond to it this time. The physical therapist who has seen her many times over the last 10 years said her body is giving out. He suggested hospice care. He sent his notes to her doctor. I think that is the next step… hospice care.My husband has already talked to hospice care and now all we have to do is talk with her doctor. I do want him to see her about her pain and discuss if it is time for hospice care. It will have to be in-home care… she just does not do well with change.

She is on Butran patches which the nursing home never ordered when she was in there, so we brought one from home. I think she is on the highest dose of them that she can function with. Most of the time she can use her walker to walk the 22 steps to the bathroom. Some days I have to use the transport chair every trip.

It is difficult to get her to drink enough fluids.. she has done well the last 3 days, but I know soon I will be telling her how important water and other fluids are. Oh .. she has had several mild strokes and she has mild dementia because of them. I think she has had several tia or mini strokes since being home from the nursing home and one while in there. Main symptoms are weakness on her left side and headaches.

Aging is not always pretty, but I have been blessed to have mama in my home for a bit more over a year now and to have a husband that loves her as much as I do.

REPLY
@fourof5zs

Let me know if the cream works for you. Just the aspercreme type cream helps,, but does not totally get rid of the pain. I guess mine would be considered neuropathy… burning, stinging.. sometimes what I call biting; a very sharp pain. It is weird to have pain and numbness all in the same area. I have to wear shoes or at least socks to help protect my feet. My right foot is the foot with the neuroma. My left foot I broke my little toe right at the joint a couple of years ago.. so arthritis there. I tripped and fell last September and I broke the toe again… now pain down the side of my foot. I have not made it back to the podiatrist to see what other damage I did.

My 91 year old mom lives with us.. It is very hard to take care of her. We tried a nursing home a couple of months ago and that just did not work for any of us. They did not take care of her well at all.. just basically sat her in her wheelchair and ignored her as much as possible… even when we were with her.. my husband and I had to do the taking care of her there. So rather do that at home. She is having a lot of burning pain in both her feet at night. The cream helps some, but she needs something better. Very difficult to get her in and out of our car. .. harder each time. The transport services are very expensive. I think I am going to have to make her a doctor appointment.. her pain in general is getting worse. She cannot take Lyrica nor Neurotin. She is on Butran pain patches. She has Type 2 Mobitz… slow heart rate… and other health conditions. I think some type of cream is going to have to be the answer. .. I just do not know which one.

Jump to this post

@fourof5zs Welcome to connect we cant give medical advice but try to help with what helps us. I have used Topricin cream it is for fibromyalgia and neuropathy. Its OTC cream I love it and find relief from it. I buy it a CVS or you can go online . Hope you all have a better day

REPLY
@fourof5zs

Let me know if the cream works for you. Just the aspercreme type cream helps,, but does not totally get rid of the pain. I guess mine would be considered neuropathy… burning, stinging.. sometimes what I call biting; a very sharp pain. It is weird to have pain and numbness all in the same area. I have to wear shoes or at least socks to help protect my feet. My right foot is the foot with the neuroma. My left foot I broke my little toe right at the joint a couple of years ago.. so arthritis there. I tripped and fell last September and I broke the toe again… now pain down the side of my foot. I have not made it back to the podiatrist to see what other damage I did.

My 91 year old mom lives with us.. It is very hard to take care of her. We tried a nursing home a couple of months ago and that just did not work for any of us. They did not take care of her well at all.. just basically sat her in her wheelchair and ignored her as much as possible… even when we were with her.. my husband and I had to do the taking care of her there. So rather do that at home. She is having a lot of burning pain in both her feet at night. The cream helps some, but she needs something better. Very difficult to get her in and out of our car. .. harder each time. The transport services are very expensive. I think I am going to have to make her a doctor appointment.. her pain in general is getting worse. She cannot take Lyrica nor Neurotin. She is on Butran pain patches. She has Type 2 Mobitz… slow heart rate… and other health conditions. I think some type of cream is going to have to be the answer. .. I just do not know which one.

Jump to this post

@fourof5zs I am so sorry to hear about your Mom. I could cry. I do not like to hear she is suffering so. I USED the TOPTICIN cream last night and this morning. To me it has helped immensely. Truly took the pail away. I just wok from a 2 hour, yes 2 hour pain free nap. Now I am not going to say "miracle" but it has helped so much. Of course I take a percocet but that is what I have been taking without this relief. It is sure worth a try. I ordered my from Amazon. I did not know they sold it in stores. My sister buys hers from their site and says she can good deals. I do feel relief. I think part is I am messaging it into my keg and foot and under my toes and foot and the message helps too. Prayers for you and your Mom.

REPLY
@summertime4

@fourof5zs I am so sorry to hear about your Mom. I could cry. I do not like to hear she is suffering so. I USED the TOPTICIN cream last night and this morning. To me it has helped immensely. Truly took the pail away. I just wok from a 2 hour, yes 2 hour pain free nap. Now I am not going to say "miracle" but it has helped so much. Of course I take a percocet but that is what I have been taking without this relief. It is sure worth a try. I ordered my from Amazon. I did not know they sold it in stores. My sister buys hers from their site and says she can good deals. I do feel relief. I think part is I am messaging it into my keg and foot and under my toes and foot and the message helps too. Prayers for you and your Mom.

Jump to this post

@summertime4 … thank you. Some days are very bad with her. This morning she was in tears she hurt so bad all over. I did heat on her knees and that helped. I gave her some tylenol. That helped too. She has an appointment with her doctor Thursday afternoon. Her oldest sister lived a couple of months shy of 99. She had 4 sisters and all died from strokes. Her 6 brothers died of either heart problems or cancer. My dad died of cancer in 2000 and my sister last year from cancer… she was the baby of us 5. I am next to youngest. My two oldest brothers live nearby, but are useless.. that is the saddest part… and the other lives in Washington state… far away but calls weekly. My husband is her son that does everything he can to get her the help she needs. I am 68 and have had many stomach and esophagus problems.. and of course the osteoarthritis in many joints. I have faith that all will be as is God's plan.

REPLY
@fourof5zs

@summertime4 … thank you. Some days are very bad with her. This morning she was in tears she hurt so bad all over. I did heat on her knees and that helped. I gave her some tylenol. That helped too. She has an appointment with her doctor Thursday afternoon. Her oldest sister lived a couple of months shy of 99. She had 4 sisters and all died from strokes. Her 6 brothers died of either heart problems or cancer. My dad died of cancer in 2000 and my sister last year from cancer… she was the baby of us 5. I am next to youngest. My two oldest brothers live nearby, but are useless.. that is the saddest part… and the other lives in Washington state… far away but calls weekly. My husband is her son that does everything he can to get her the help she needs. I am 68 and have had many stomach and esophagus problems.. and of course the osteoarthritis in many joints. I have faith that all will be as is God's plan.

Jump to this post

@fourof5zs I'm so sorry your Mom is hurting so bad You are a good daughter and what a guy you have there ,he is a keeper for sure . The Topricin helps a lot for the nerves or neuropathy hope you can find it . There is in home hospice as I use to do this the Dr. will help you when its time God bless you

REPLY

Hi, I am Don in Ventura,CA. I am 70 and had scoliosis followed by an additional back injury. For the past 5 years I experienced excruciating right foot nerve pain. It is worse at night. Pain meds made me sick so I went with an SCS by Stimwave. It has been 1 week and I feel a little better but still get pain bursts at night. Has anyone had experience wearing a Stimwave SCS? (good or bad) Thank you!

REPLY

hello

REPLY
@donw200

Hi, I am Don in Ventura,CA. I am 70 and had scoliosis followed by an additional back injury. For the past 5 years I experienced excruciating right foot nerve pain. It is worse at night. Pain meds made me sick so I went with an SCS by Stimwave. It has been 1 week and I feel a little better but still get pain bursts at night. Has anyone had experience wearing a Stimwave SCS? (good or bad) Thank you!

Jump to this post

@donw200 Welcome to Mayo Clinic Connect. We are glad you found us! We are not medical professionals, and cannot diagnose. We are fellow patients, family members, and caregivers who share our experiences and what has worked for us [or not!], offering support and suggestions. How much time was there between your surgery and the onset of the foot nerve pain? Is there a chance there was a complication in the surgery that led to the foot pain? I lived in the Ventura area for 16 years, moving in July 2018! It is a beautiful area.
Ginger

REPLY

I had this foot nerve pain for 5 years before the Stimwave scs.

REPLY

Just saw this article in my newsfeed and thought the members in this discussion might find it interesting. I do take 1.5 oz daily of Manitoba Harvest Organic Hemp Seed Oil but not for pain.

CBD products, hemp oil may be helpful but more research is needed, Mayo Clinic review says
https://newsnetwork.mayoclinic.org/discussion/cbd-products-hemp-oil-may-be-helpful-but-more-research-is-needed-mayo-clinic-review-says/

REPLY

Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar and hips for months and it has escalated to the point I can’t walk my dog. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then RF nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all. help. My surgeon has asked me to come in for a chat this week. We all know that when a surgeon calls you in, he’s gonna tell you that you need surgery! In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real 1) to help pick up the numerous things I drop (due to cervical fractures), retrieve things and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.

REPLY
@johnbishop

Just saw this article in my newsfeed and thought the members in this discussion might find it interesting. I do take 1.5 oz daily of Manitoba Harvest Organic Hemp Seed Oil but not for pain.

CBD products, hemp oil may be helpful but more research is needed, Mayo Clinic review says
https://newsnetwork.mayoclinic.org/discussion/cbd-products-hemp-oil-may-be-helpful-but-more-research-is-needed-mayo-clinic-review-says/

Jump to this post

@johnbishop Thanks so much John. That was a succinct overview of the cannabis industry. I appreciated knowing that the cannabis derived tinctures are being accepted because they work.

As usual, be a team with your medical providers, And do follow some of the unbiased reporting. Be particularly careful of OTC and online Products. They may belie the hype about them. Dispensaries are really quite thorough with their criteria for selection of products qualified as medical cannabis.

However, we all are hungry for more research and testing. It appears we must first modify the federal laws about transporting across state lines.

Be happy and content today, John. My best to you, Chris

REPLY
@jmweissler

Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar and hips for months and it has escalated to the point I can’t walk my dog. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then RF nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all. help. My surgeon has asked me to come in for a chat this week. We all know that when a surgeon calls you in, he’s gonna tell you that you need surgery! In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real 1) to help pick up the numerous things I drop (due to cervical fractures), retrieve things and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.

Jump to this post

@jmweissler You sure have been through a lot. I knew someone who was paraplegic who had a service dog that did amazing things. She helped run the local chapter for Canine Companions for Independence which is an organization that matches trained service dogs with people who need them. I am a spine surgery patient with a single level fusion in my neck and I am doing well. You might do well using a wheel chair to scoot around in which will exercise your legs and you wouldn't have a risk of falling. It must be difficult to adapt to that much disability from spine surgery. Are they treating your osteoporosis? I'll mention this as a possible reason for osteoporosis, and that would be a problem with a parathyroid gland that causes it to pull calcium out of the bones and have a very high blood calcium level. My mom had this issue and after they removed one of the 4 parathyroids, her blood levels were fine. They test that during surgery to make sure they got the right one. It would be worth asking about to see if your docs checked for that. I'm glad you have a dog who helps you smile. That's important when you have a lot of stuff to deal with everyday.

REPLY
Please login or register to post a reply.