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Other Platelet Disorders

New Way to stop pain found

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15 years 4 months ago #5108 by Inspire
New Way to stop pain found was created by Inspire
Found this:

Scientists learn to block pain at its source: New non-addictive painkillers from substance similar to ingredient in hot chili peppers

"This is a major breakthrough in understanding the mechanisms of pain and how to more effectively treat it," Dr. Hargreaves said. "These data demonstrate, for the first time, that OLAMs constitute a new family of naturally occurring capsaicin-like agents, and may explain the role of these substances in many pain conditions. This hypothesis suggests that agents blocking either the production or action of these substances could lead to new therapies and pharmacological interventions for various inflammatory diseases and pain disorders such as arthritis, fibromyalgia and others, including pain associated with cancer."


Taken from:

www.sciencedaily.com/releases/2010/04/100426181706.htm

Maybe many years down the line but least it's something.
Nate

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
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15 years 4 months ago #5110 by eklein
Replied by eklein on topic Re: New Way to stop pain found
For migraines, I'm totally serious, there's been some research suggesting some are helped by dabbing the hot stuff way up high in the nose/sinus using an extra long qtip.

I'm a chile head, I'm all for it. At minimum, it gets the endorphins flowing. At this point I might have a leather mouth...
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #5117 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
I knew about the capsasin connection with pain relief, but in pill form - that's interesting.
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15 years 3 months ago #5311 by Inspire
Replied by Inspire on topic Re: New Way to stop pain found
Well I'm trying another exercise to see if I can tolerate it to help with pain, as docs keep telling me exercise will help my pain, althought it hasn't in the past. I am giving bicycling another try, I have tried it in the past, but hills and tougher terrain did me in. But I did enjoy it, so I did more research and found out they have electric bikes. They have bikes that have pedal-assist where it gives extra power as you peddle based on the settings, and then there is power on-demand which acts like a motorcycle and moves the bike whether you pedal or not, so you could basically ride it like a motorcycle. They run on just a battery, no gasoline and don't go over 20mph on battery alone. I got a bike that has both options, so I can choose. So on hills I can get a little help, and if I get tired or ride too far, I can use the battery to help me make it back or something.
I hope it works out! I miss being able to be more active. Just gotta watch out for the sun!

Nate

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
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15 years 3 months ago #5318 by eklein
Replied by eklein on topic Re: New Way to stop pain found
Great idea Nate. I've been bicycling, only after 7pm. We found a nice mostly flat route in the neighborhood, 4 mile loop. I find if I try to go too fast I can't do it, but taking it at an easy pace it's a great workout. Yesterday my bike suddenly had a problem with the tire scraping the frame, I don't know why, so I'm dreading having to deal with it today.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 3 months ago #5333 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
Whenever I try to exercise, no matter how light, I spend days paying for it. I know it's normal to be sore after exercising, but this isn't "normal sore". I do remember what that was like. It's frustrating because my muscles turned to flab...I think because of the low D.
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15 years 3 months ago #5959 by Inspire
Replied by Inspire on topic Re: New Way to stop pain found
I am getting my bike I think weds or thurs finally! Oye it was backordered and took forever. I have GREAT news...I got rid of Dr. Kurt Smith who turned into more of a lawyer than a doctor. His last conversation to me involved "I had a patient that came into the office and has seen 36 doctors for pain medication, so that is going to reflect on how I treat you now." and "My license is more important than you." Then he decided to cover himself by stating "I am not a pain specialist," when on the website it states "PAIN SPECIALIST" and when I was referred to him he accepted my case as a "PAIN DOCTOR." And I think his business card even says it. Whatever. And while I understand what he was trying to say to me, what he ended up saying was very innappropriate and he should have worked with me to come to an agreement. But he seemed too have misplaced his heart. So I got rid of him.

So - by the luck of the draw, or that something bigger than me realized I was beginning to give up on life due to the mindset Dr. Smith put me in over the past year, making me feel worthless and hopeless with his lack of compassion and understanding and allowing my pain to grow to the point I hsd withdrawn from everything but work because I was constantly in body pains. As I was saying, by luck or who knows my rheuma mentioned another doctor he said may be able to help me locally.
But I was not able to see him until August, but I was able to get a cancellation spot, I saw him last Friday and he immediately brought up improving my quality of life as that is the most important thing. I was so grateful, and he discussed that we needed to work together on this and he would not make any decisions for me by himself.

It was a long appt, and he listened to everything I said and never made me feel stupid and made me feel hope again. We're going to have to figure out what to do, but I told him I want to keep going down on the Fent patch because I'm tired of managing it. He said that was fine with him, and that he would like to try a new medication called Nucyntha in place of Oxycodone. Then as time goes, we will make changes until my pain is better under control so I can live my life again. I hope this works out, I don't know what to do otherwise.

I'd say more but I dont want this too long as talking about pain gets old, just like having it. I now can say, acute excrutiating pain is not as bad as constant, lingering pain that never gives you a break.

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 3 months ago #5961 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
I hear ya! I had 8 steroid TPI injections which really helped. Between those and the TENS, I feel 80% better. Still taking the Vicodin, Flexeril, Naproxen, Prednisone and Plaquenil too.

Good luck Nate. I hope this doctor helps. It takes many trials to find what works...I may have finally gotten there.
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15 years 3 months ago #5965 by Inspire
Replied by Inspire on topic Re: New Way to stop pain found
He says more than likely he'll give me facet injections in my neck since they helped in the past. But so far I dont think Nucyntha is working, it kind of makes me feel light headed and it makes me pupils really sluggish so I lose some near vision. It also seems to be only taking away like muscle pain but not the deep lingering pain? Which feels odd. I think I want to go back to Oxycodone. He talked about using methadone, but I told him I am really concerned about that as once a person is on it, it is no fun to get off. And if you are on it too long, you never can get off of it! I dont like that idea. I hope in 5 years or so more pain meds will come out that are not narcotics but calm down the nerves or like the medicine this thread was originally made about. So I hope I will be off narcotics completely, but in the meantime I have no issue being on narcs because I want to live my life. Just like people with Lupus, we have to use meds that arent ideal until new Lupus specific meds are made.

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 3 months ago #5988 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
What were the facet injections? In the muscle or in the spine? I've had both, and the spinals didn't help but the muscle injections did.
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15 years 3 months ago #6094 by Inspire
Replied by Inspire on topic Re: New Way to stop pain found
I think into the spine...maybe illl try muscle also next time...

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 3 months ago #6116 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
I'm going again on Tuesday for the muscle injections. They really did help. The spinal did nothing at all. If you can, try the TPI's. I had no side effects, but they can cause side effects long term. They used Lidocaine and Kenalog. Hurts a lot getting them, but there was instant relief.
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15 years 2 months ago #6208 by Inspire
Replied by Inspire on topic Re: New Way to stop pain found
I think I will get injections into the muscle, Im scared of it but I need pain relief. I am giving methadone more thought, If I am going to give up fentanyl patches and Oxycodone pills dont work...or time release morphine...I dont know. I just want pain relief. But I have hope that time release morphine or oxycodone will work. I just need an adequate dose. And I just hope that new medications come out that eliminate why the pain happens in terms of the nerves and receptors and chemicals, etc.

I wish fentanyl came wiht a time release oral. I am only mentioning time release Morphine by the way beause my pharmacist told me that the drug companies are no longer making generic Oxycontin (Time release oxycodone) and that I was going to have to go brand name for it. That can get expensive. I hope she was wrong and they arent no longer making it.

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 2 months ago #6229 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
I have no idea. I was prescribed a time release Morphine (forget the name of it), but I declined. I still have to function and wouldn't be able to think with those drugs. I don't know how you can.

I got 11 more injections today. You do break out in a sweat getting them, but it doesn't take long and it was well worth it the last time.
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15 years 2 months ago #6254 by Inspire
Replied by Inspire on topic Re: New Way to stop pain found
I think pretty normal really, I havnt done anything that proves I don't. I think it's simply that I was on a low dose and slowly was worked up to my present dose over a period of years, and the brain gets used to it and side effects go away. I rarely get sleepy either. Honestly, I think it only takes a week or less for that sleepy, dazed sideeffect to go away if you take it around the clock.

Getting multiple shots into my neck muscles just sounds like no fun. Theyre probably faster and less painful than the neck spine injections I got twice tho.

08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 2 months ago #6264 by Sandi
Replied by Sandi on topic Re: New Way to stop pain found
I'm always sleepy, so I'd be afraid of harsher drugs than I'm on now.

No Nate, the muscle injections are not fun, but they don't take long (5 minutes tops). You get through it. The spinals take a bit longer, but didn't work for me.