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.

@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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Any experience with stem cell injection ? I went to a seminar last night . I am going for an evaluation today .

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@leticia

Good morning ladies, I am new to this group, but see myself in all your posts. I have been dealing with Fibro for twenty years. Nine years ago I was diagnosed with breast cancer. I Had several surgeries along with six rounds of chemo. Presently, I have daily chronic pain — lower back (if I overdo It) arthritis in both knees (the last six years I’ve been getting either steroid shots, or the sinvisc shots), neuropathy in both my feet (from chemo). My overall pain has gotten worst since chemo (I’m sure aging has also been a contributing factor too). Years ago I took between four – six Percocet a day. For almost two years now, I only take half a pill in the mornings. As most of you can imagine, dealing with all this starts to affect your emotional and mental wellbeing. I’ve seen counsellors at several different times. I do yoga and have been for at least 15 years now, I get massages every other week, and currently started acupuncture for my neuropathy (I feel fortunate to say — it’s working). I have been dealing with all this for so many years now, and I can honestly say I’m in a bad place emotionally right now. I take Ativan once a day to help wth anxiety stemming from all this. I am blessed to say I have a supportive husband in all this although I was never blessed with children. All my family member live far away. The friends I do have, I don’t like to burden them too much with my situation. The fact is that my life very much has become “dealing with my health concerns with much resting in between”. Not too many healthy people want to listen to your issues. It’s a bad place to be. Thank you for listening.

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Leticia,

I signed on to this site only yesterday. I do empathize with your pain. I have a lot, too. I just wanted to let you know that it is not only ladies that suffer and keep searching for new remedies. I have spinal stenosis and both torn rotator cuffs. Opiates no longer work. I spent $6700 on a PEMF machine. It hasn’t helped. We will be doing a spine stimulator as soon as the insurance approves it. My best friend is a psychologist with MS. She knows her situation, Another friend suffers primarily from fibromyalgia. She has spent many years trying to get people to believe her and to treat her pain. I understand pain. I hope I can contribute to as well as learn from this group. Best wishes. Michael

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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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Hi, I have posted about my injuries before. I’ve been a chronic pain patient for many years, wiith multiple surgeries and broken bones and back problems from those injuries. I felt like what the government was doing was very scary, but I also hated being in a situation where I was clinging to my doctors office and wanted something different for myself. I went through a rapid detox at my request about three weeks ago. It is not easy, but it’s quick and over with. And yes I did read up and talk to many doctors about it before I did it. The people I did it with are amazing. I have never felt so cared for and watched out for. I was there for four nights. After that it took about 2 1/2 weeks before I finally felt like I was coming back to myself. I no longer have any opiates in my body feels wonderful. Amazingly most of the pain has diminished significantly. After that I was referred to a very reputable Doctor who does do stem cell therapy. He does not prescribe pain pills, he does things in a natural way and only goes on to stem cell if epidurals with the medications he uses don’t work. He’s not a quack, he is a board certified anesthesiologist, also board-certified is pain specialist, and went to USC and UCLA where they specialize in stem cell therapy. If you read AARP magazine this month there’s an article about stem cell therapy. They say UCLA is one of the top leaders in training board certified physicians in that area. Don’t go to your local plastic surgeon. Anyway, after about 2 1/2 weeks of not being on opiates my pain level is way down to almost manageable with just epidural injections once in a while. I am getting a new MRI of my neck, to try his type of medication. He uses a lot less Cortisone and other medications mixed with it. I will consider the stem cell therapy, if it seems needed in the future. This man has done a lot of it and knows what he’s doing, you could tell by talking to him and reading about him. He also came highly recommended from the people that I was going to. I also figured out which was very strange, that I have been highly addicted to sugar. Before the detox and getting all this out of my system, all I wanted was sweet things. When you go through it you’re sick to your stomach and you’re not really wanting to eat a lot for a while. I had a headache for about two weeks and couldn’t figure out why. Now sweets don’t even taste good, headache broke. It’s almost like the light of the world has opened up again. I can smell things, taste things in ways that I had forgotten were even possible. I think I partially did this because I was afraid of the Government, I also wanted to do it for myself. I do not believe they should be interfering and making things so difficult for people who do have chronic pain. It’s their choice how they handle it.

Last night I read about withdrawals from sugar and again it was in the AARP magazine. Reading the symptoms was amazing it said like withdrawing from drugs a second time. Now that I have all of that out of my system, I still have neck pain but my headaches and neck pain have diminished tremendously as has my back pain. Not saying it’s a miracle, my injuries are still there, but the chronic opioid’s made it worse.

I myself had gotten to the point where they had stopped my whole digestive system. I had gotten to where things not move through very well. I would eat a meal and four hours later throw it up. It just had nowhere to go. Nothing I used worked to fix this problem. That really was one of my biggest reasons I couldn’t live like that, and I wanted to see if I would feel better off of the opioid medicines. Although I wasn’t withdrawing from the opioids, it still took me a while to get through the headache phase and feel my strength coming back. Every day I feel better and better. Not only do I intend to go to this doctor that does the natural medication for the epidurals, and trying to limit my use of steroids, if he thinks from the MRI that the stem cells could make a more permanent improvement, I am willing to try it in my worst areas. The areas where I had the worst broken bones,and bad discs. In the article it doesn’t say that stem cell therapy is bad, it says to go to a reputable doctor that is trained in it and has done a lot of it. It also says, which this doctor told me, that it is most beneficial at this point in orthopedic type injuries, or certain cancers. Like old fractures that are bothering me, and neck and back problems like discs. He also made no promises. He said it was at 50% to 70% rate of improvement after the stem cell therapy. He’s done a lot of it and he’s very well-trained. He was also very honest. I felt like he was really being straight with me and wasn’t pushing the procedure. Even though a seminar would be informative, that’s not where I would go to find a doctor I wanted to go for the procedure. I would get referrals from Dr.s you trust the way I did. I don’t know what state you are in, I’m in Southern California. I’m very close to Los Angeles/UCLA med school where they do the training for these doctors, I’m sure there are other universities that do the same, you might call them. You could also call UCLA and see if they can refer you to someone. The other thing is I think they’re gonna want you off all opiate medications, this doctor did. He said stem cells were not a magic bullet, but it has helped a lot of people that he has as patients. He impressed my husband and I most because he wasn’t pushing it. It isn’t paid for by insurance because it’s considered experimental, and it’s not cheap. He felt like it should be considered only when nothing else worked.

That was my most recent experience. If you see my past posts, you’ll see how much pain I have been in, a lot! I’m actually quite amazed right now with my own bodies and ability. Don’t missunderstand me though, this was a very difficult procedure to go through and recover from, but I feel like I see the light at the end of the tunnel which I never thought I would see. Sorry for being so lengthy, Jen

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@leticia

Good morning ladies, I am new to this group, but see myself in all your posts. I have been dealing with Fibro for twenty years. Nine years ago I was diagnosed with breast cancer. I Had several surgeries along with six rounds of chemo. Presently, I have daily chronic pain — lower back (if I overdo It) arthritis in both knees (the last six years I’ve been getting either steroid shots, or the sinvisc shots), neuropathy in both my feet (from chemo). My overall pain has gotten worst since chemo (I’m sure aging has also been a contributing factor too). Years ago I took between four – six Percocet a day. For almost two years now, I only take half a pill in the mornings. As most of you can imagine, dealing with all this starts to affect your emotional and mental wellbeing. I’ve seen counsellors at several different times. I do yoga and have been for at least 15 years now, I get massages every other week, and currently started acupuncture for my neuropathy (I feel fortunate to say — it’s working). I have been dealing with all this for so many years now, and I can honestly say I’m in a bad place emotionally right now. I take Ativan once a day to help wth anxiety stemming from all this. I am blessed to say I have a supportive husband in all this although I was never blessed with children. All my family member live far away. The friends I do have, I don’t like to burden them too much with my situation. The fact is that my life very much has become “dealing with my health concerns with much resting in between”. Not too many healthy people want to listen to your issues. It’s a bad place to be. Thank you for listening.

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I, too, have a lot of pain. Several cancers, AL Amyloidosis, enlarged organs, Fibril deposits in nerves, etc. But I am learning one thing. It gives me lots of laughs at the expense of egotistic doctors. First, I have tried to track the false diagnoses I have been given. I believe there have been about 30 that have failed for some reason. And most Docs have given me prescriptions for pain, or to kill the diseases, and these did not work. Opioids, marijuana, chemicals, psychological fads, surgery, clothing, haircuts, manners of speaking, eating, walking, singing.  Books to read, TV shows to watch or don’t watch. And on and on.
What I have learned is that most of them (Not all of them, but a lot of big name medical center staff) know less than I know, which is not much. So I liken it to the three stooges, or Red Skelton, and go to bed at night with a hearty laugh at another effort that did not work. I have seen about 50 doctors in the last ten years, and no two of them have the same diagnosis for me. So cheer up. There may be something coming down the pipe that will work. There may be a doc out there for you. Just keep a smile on your face, listen to some great music, and keep plugging along.

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@ to Oldkarl, I understand what your saying it has happened to me too and I would bet to a lot of others here have had similar experiences. When you have a problem that is on going and does not go away it is natural to start reading about it and learning as much as you can. Even to the point that you may know a few things that the doctors have not learned yet. Of course that does not mean that they are lacking given all that they must know to be doctors, but you do become an expert on your illness and yourself. Many times I have told a medical provider that something will or won’t work, but they ignore me and do it anyway.
I have found out the hard way it is best not to say much later about my being right and them wrong as doctors and other medical providers ego can be rather large and delicate. (I have found this especially true of certain nationalities.) Ultimately they control you medication and who you will be referred to later on. So it is better to laugh to yourself and tell the story to family and friends when the medical people are not around for your own well being. Good luck, 19lin.

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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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@powerl2017 I would like to know more since one problem I have is no cartilage left in my only knee. Also I have various back and hip problems which I have yet to explore fully. I need to know more on how it works and the cost and if medicare will cover any of it? Thanks 19lin

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@19lin May I ask what nationalities tend to be offended easily? This is probably something in their culture. I ask because right now I have doctors of many nationalities. So far I would consider most to be pretty open, except for my PCP who is an American of Italian descent. He’s very American but I figure being an American male may be what makes him think he knows everything. I really do not mean to male-bash but I just find that to be true in my experience.
JK

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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 understanding from the reading, and from questioning this doctor, is that the stem cells actually regenerate and create the missing either disk or parts in the joint that are no longer there. I am no expert and I would strongly suggest you read as much as you possibly can.

One of my personal issues was a broken humorous in my left shoulder that went on to a non-union of the bone. The stem cell is injected between the two ends of the bones and the bones reconnect with your own cells and it creates new bone of your own. This is directly explained on his website. I also spoke directly to him about that. They use this stem cell procedure for that problem now. When I did it in 2008 I had to go through two open shoulder surgeries, including plates screws etc., and three more surgeries for all of the parts that were torn, damaged etc. I went through five surgeries to get my broken shoulder back together. That I did talk to him about and he said it would not be handled in the same way today as it was in 2008. For your specific problem or you, I would have to find a doctor that is an expert in this field and ask them about your specific issue. I know from talking to him that I would’ve tried this way before I tried what I had to go through. I know for torn Rotator cuff’s it can work, it even is mentioned in the literature that it can help with diabetic neuropathy pain and regeneration of those nerves. Again I haven’t tried it I’m just reiterating what I’ve read and asked. I am no expert on any of this. I strongly suggest speaking to the schools that I mentioned, our googling pain doctors in Southern California at that do these procedures. I’m not sure it’s OK to mention his name. If I get the OK from other people that run this list I’ll be happy to. You may not want to come all the way out here but you could find out reputable people in your area. I hope that helps, Jen

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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 don’t think anything pays for this, and the only quotes I’ve seen is about $5000 but I haven’t completely investigated the costs. My guess is it depends on the doctor. I’m not sure if the $5000 is one treatment or more than one treatment, I think they harvest enough stem cells to be used more than once. What they do is they suctioned fat from areas of your body that would be appropriate, they immediately spin it down and harvest the stem cells from it, then they re-inject it into the area of your body that I have the issues. Again my understanding is that one harvest can produce enough stem cells to treat more than one area or treat that area multiple times. It is not paid for by insurance or Medicare is because it is still considered by the FDA as experimental. Jennifer

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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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Try googling doctors that do stem cell therapy in Newport Beach California near Hoag hospital.

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@contentandwell

@19lin May I ask what nationalities tend to be offended easily? This is probably something in their culture. I ask because right now I have doctors of many nationalities. So far I would consider most to be pretty open, except for my PCP who is an American of Italian descent. He’s very American but I figure being an American male may be what makes him think he knows everything. I really do not mean to male-bash but I just find that to be true in my experience.
JK

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@johnbishop John, not you of course. 😉

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@contentandwell

@19lin May I ask what nationalities tend to be offended easily? This is probably something in their culture. I ask because right now I have doctors of many nationalities. So far I would consider most to be pretty open, except for my PCP who is an American of Italian descent. He’s very American but I figure being an American male may be what makes him think he knows everything. I really do not mean to male-bash but I just find that to be true in my experience.
JK

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My wife has taught me the two most important words in a man’s vocabulary – Yes Dear! Followed by your were right. ☺

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Hmmmmmm …………
abby

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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 was just at my long time PT person. He said he has a number of people that I’ve been doing stem cell therapy. One man just flew to Spain because they will use bone marrow and replicate the cells which apparently is illegal in this country. He said that one of the things he seen the most from benefit besides the back, is the knees.

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@contentandwell

@19lin May I ask what nationalities tend to be offended easily? This is probably something in their culture. I ask because right now I have doctors of many nationalities. So far I would consider most to be pretty open, except for my PCP who is an American of Italian descent. He’s very American but I figure being an American male may be what makes him think he knows everything. I really do not mean to male-bash but I just find that to be true in my experience.
JK

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@johnbishop You are a very smart man, John.
JK

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