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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They’re sending me an email with it all explained, and they’re gonna call me back tomorrow in the middle of the day when the time zones work. They do use stem cell’s for orthopedic problems. That phone number will forward you to Orthopedic regenerative department. She said in the email she sending, is the direct phone number. Thank you Colleen, that was super helpful. Jennifer

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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@jenapower

Thank you for your input. I’ve been taking Morphine sulfate contin for a few years, and I just had to live with the pain that it didn’t mute. I slowly tapered off it at one point to see if it was really helping. I went back on it after 2 or 3 weeks because the pain was intolerable. I did end up with a lower dosage, which just makes it tolerable most of the time. (I have peripheral neuropathy.)

I had a spinal cord stimulator implanted 4 weeks ago, and this past Saturday, I finally got significant relief, and by today, my feet didn’t hurt much at all. I’ve been seeing therapists for 13 years for depression, PTSD and anxiety. I have been feeling my mood improve over the past few days. PTL!

Jim

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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Hi Jim, the pain medicine roller coaster is definitely a double edge sword. I was in so much pain I didn’t think I could live for the last three weeks when I got off of it. I ended up back in the emergency room because my blood pressure was so high from the pain. I told them when I went in I didn’t want any narcotics, to do whatever they could to relieve the pain. The pain was so bad I’d been throwing, with the highest blood pressure I’ve ever seen on me. Somehow they fixed it without narcotics and got my blood pressure back to normal which is usually really low. I’ve got a whole host of things from badly broken shoulder that’s had five surgeries getting it back together, discs in my neck that are completely messed up, facets in the center of my back like hurt like crazy, and I have a perineural cyst in my spinal cord at S1. I understand that it can be depressing.

Amazingly after three weeks the pain just broke. I can’t even explain it. It’s still there, I feel it in the places that have been injured, but the intensity on its own went down by at least 60% to 70%. These are all things that show up on MRIs, and I just had another one today. That’s why I was looking into the stem cell therapy and all that specific injections into the sites, really don’t want surgery.

I did called the Mayo Clinic information line today to find out if they used stem cells for orthopedic injuries and they do. The person’s supposed to call me back tomorrow who can give me the information about specifics. I’ll post it at that point. I guess I’m hoping beyond hope that something like that could be helpful without drugs and without surgery. Jennifer

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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I’d also been diagnosed by three doctors, including out at a Cedar Sinai in Los Angeles, that I had fibromyalgia. Somehow I just never really believed it. All those symptoms are gone, just gone. One has to wonder what those meds do.

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Hello, I am Hoot a 78 year old male. I have ANCA-positive vasculitis, Hashimoto’s thyroiditis and Polyosteoarthritis. I have constant pain but not near what so many of you have. I was put on Methotrexate but could not handle the side effects. And then Azathioprine with the same result. I am currently trying to get approved for Medical Marijuana. and am currently taking CBD which has helped a lot. Someone on this list said they were taking Kratom and it helped. I looked it up and I am a little scared. Can anyone comment that is taking it and do they consider it safe.

Thanks,

Hoot

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@boourbonman

Hello, I am Hoot a 78 year old male. I have ANCA-positive vasculitis, Hashimoto’s thyroiditis and Polyosteoarthritis. I have constant pain but not near what so many of you have. I was put on Methotrexate but could not handle the side effects. And then Azathioprine with the same result. I am currently trying to get approved for Medical Marijuana. and am currently taking CBD which has helped a lot. Someone on this list said they were taking Kratom and it helped. I looked it up and I am a little scared. Can anyone comment that is taking it and do they consider it safe.

Thanks,

Hoot

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Hi Hoot,
I actually tried it once a long time ago. I really didn’t get any relief from it personally. My son used it after a surgery and he found it helpful so I think it’s dependent on the person. I asked my son more about it today because you were asking about it, he said it was like other medications even though it’s natural. It can be abused and it can be addictive. I don’t know that much, I just know that the two of us have tried it and neither one of us use it. He said ask your doctor, but it is supposed to help with pain. I think you just have to be careful. If you’re taking a lot of medications, I’d make sure your doctors OK with it.
Jennifer

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Jennifer, Thank you so much for the information. I am still not sure if I will try it.
Hoot

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@boourbonman

Jennifer, Thank you so much for the information. I am still not sure if I will try it.
Hoot

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Hoot I think it’s great you’re looking for alternative medications. Sometimes they work and sometimes I don’t but I admire the fact that you’re trying.

For me I can say when I tried it it really wasn’t harmful and I did it for a little while now and just figured it wasn’t working for me and stopped. I don’t think you’re going to get hooked on it by just trying it, people abuse it. I was just concerned about the other medications you’re taking.
Jennifer

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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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contentandwell I would rather not name nationalities, It maybe more personalities of those involved. But as you pointed out culture does seem to shape behavior and the way they treat people. It is more an observation on my part than any objective study. Each individual should be judged on their own merits. 19lin

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Let’s bump it up, please. Back to the topic of chronic pain!!!

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Hi Vickie, I have chronic pain, and even if it you don’t want to hear it, they are using marijuana more and more for it. It is getting so hard to get any opiods for the pain, and the Drs are pumping up the medical marijuana. What about it bothers you? I tried the marijuana, and it made me paranoid, but for many people it is the only thing that helps. They are talking about putting it in the elderly patients food because they could tolerate it better and you don’t get all the side effects of the pain meds. Are you on pain meds? I am on Vicodin, and have to go to a pain clinic to get it as my Doctor won’t prescribe it, and there are days I don’t need it so I don’t take it, but then they give you less pills at the pain clinic. But you don’t know when you are going to need it so it is good to have a months refill, but they are afraid you are going to sell it instead of taking it. I think at 71 years old I am not in the business of making money, I just want to help myself, and keep my stress level down, but my fear is someday I won’t be able to even get the Vicodin for my pain. How do you feel when you are in pain?marield65

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Now able to separate the components in marijuana into THC and CBD’s. You can get many products, including pain patches that only contain CBD’s. Is no mental effect at all with the CBD’s, it comes from THC. You don’t have to smoke anything, if you’re in the state that it’s legal.

Liked by blindeyepug

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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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@19lin, I understand and I agree. I asked only because you said “certain nationalities”.
JK

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@marield65

Hi Vickie, I have chronic pain, and even if it you don’t want to hear it, they are using marijuana more and more for it. It is getting so hard to get any opiods for the pain, and the Drs are pumping up the medical marijuana. What about it bothers you? I tried the marijuana, and it made me paranoid, but for many people it is the only thing that helps. They are talking about putting it in the elderly patients food because they could tolerate it better and you don’t get all the side effects of the pain meds. Are you on pain meds? I am on Vicodin, and have to go to a pain clinic to get it as my Doctor won’t prescribe it, and there are days I don’t need it so I don’t take it, but then they give you less pills at the pain clinic. But you don’t know when you are going to need it so it is good to have a months refill, but they are afraid you are going to sell it instead of taking it. I think at 71 years old I am not in the business of making money, I just want to help myself, and keep my stress level down, but my fear is someday I won’t be able to even get the Vicodin for my pain. How do you feel when you are in pain?marield65

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I am totally in favor of medical cannabis for pain control. I think it should be legalized across the board. My earlier concern was about the odd discussion regarding nationalities that seemed like it was going in a negative direction.

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@lizer

I’m Elizabeth. I’ve had fibromyalgia since 1998. In the last few years, I’ve developed osteoarthritis and spinal stenosis. I am married with four adult children and a wonderful, caring husband. We also have a wee dog, Bella, who forces me outside for walks twice a day. Lately, managing the FM symptoms has seemed like a full time job and I’m in need of some serious motivation.

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@lizer Hi Elizabeth! You seem very similar to me. I was first diagnosed with fibromyalgia in 1999. Over the years, I have additionally been diagnosed with rheumatoid arthritis, sjogren’s syndrome, spinal stenosis, osteoarthritis and, recently, Lupus. I understand how daunting it can be. I have three grown children (two girls and a boy), four grown step children (three boys and a girl) and four grandchildren. I, too, have a wonderful husband. I also work part time and care for my mother who lives with us (she has Alzheimer’s). I have had my moments of depression and “why me” or “not yet another issue”! Luckily, I have doctors I trust. I am on antidepressants – which also help with the fibro pain (you may want to check into this if you are not already taking them) – but they greatly help to keep me from falling into the abyss of deep depression. I also try to do water exercise at least two to three times a week and I recently purchased a treadmill so I can walk regardless of the weather (I can not take extreme heat, and I live in Texas – go figure! LOL). You must try to move the majority of days out of the month. I totally understand having what I refer to as “lost days” – I literally am so exhausted I stay in bed all day. But I do not allow myself to have too many of those because it actually makes me feel worse if I stay in bed too long. You state you were diagnosed in 1998. Has something changed that you are having more difficulty lately? Perhaps something new is going on? Have you spoken to your doctor? I also do my best to remind myself of my blessings – kids, grand kids, husband, my pets, my sisters and friends, the fact that I don’t live in a third world country and, thus, have access to good medical care! I have air conditioning – HUGE blessing! I also sleep on a Temperpedic mattress. I highly recommend them to anyone with fibromyalgia (I do not work for them or a store – I just truly believe in the product). I also find taking jetted bathes help – or a hot tub would be similar. Listening to up beat music is also helpful. Do your best to stay in touch with friends – at least the ones who are supportive and understanding. Stop seeing or talking with the energy drainers in your life or those who are constantly negative toward you and your issues. Also, this is a great web site to get information, support and understanding. I pray you find new friends and new ways to get relief! Thanks for sharing your story!

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