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.

@karen00

Hello back! @JustinMcClanahan ! Thanks for taking the time to share that information. I read anything I can find on fibromyalgia. Knowledge is power!

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@karen00
Good morning!
I just wanted to let you know that if you go on the Mayo Clinic website, they have many newsletters you can sign up for.
They do have one for FIBROMYALGIA.
Here's to a pain free day….
Ronnie (GRANDMAr)

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I am so glad I found this website. A good friend has been diagnosed with arachnoiditis. We am desperately seeking for a doctor who specializes in arachnoiditis and/or communicate with anybody who suffers from this devastating illness. He is looking for ways what others are using for pain management. Any suggestions would be GREATLY appreciated. We feel so helpless. Thank you in advance for your help.

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@llc927

I am so glad I found this website. A good friend has been diagnosed with arachnoiditis. We am desperately seeking for a doctor who specializes in arachnoiditis and/or communicate with anybody who suffers from this devastating illness. He is looking for ways what others are using for pain management. Any suggestions would be GREATLY appreciated. We feel so helpless. Thank you in advance for your help.

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Thank you so much for your help, Justin.

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@sharonmay7

Brainsr I know what u mean!! I’ve seen people in real pain kicked out of the Drs. Office because there pee test came out bad. But how can this be league It seems that if a good dr. Is giving u heavy duty pain pills how can they just stop them??? If I stoped I would get sick. I think I would sue if they just stopped!!! The way I understand it is that if I stop I would go through withdrawal. Is that true. I’m on fentenol 75 mg. and oxyconde 10 three times a day. Sharon.

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If you don't take enough to get high, you probably would not have much in the way of withdrawal even if you stopped cold turkey. I have experienced radical dose reductions overnight and had nothing more than restless leg for 3 or 4 hours. I should point out that I resisted the temptation to take more than I was supposed to. If your meds get you high, tell your doctor what's happening and have them reduce the dose or try something different.

You may have to sign a contract in which you agree to take your meds as prescribed and to not take any other meds that were not prescribed by the doctor asking you to sign the contract. This contract allows the doctor to require a urine sample or blood test at any time.They will test for legal as well as illegal drugs. If your getting narcotics you need to get them from only one source. To treat you properly, your doctor must know that they are the only one giving you these drugs. You also agree, that if you do get meds from another source, like a visit to the ER or something from the Dentist you need to notify your doctor within a day or two. If you are not taking them because you are selling them, or giving them away, or stockpiling them for any reason, the drug tests you agree to take, will reveal this. It will also reveal if you are smoking or vaping pot or abusing over the counter meds. In fact, if your doctor seems nervous about treating you with narcotics encourage them to test you on a regular basis. This is their cover which they need to keep their licenses. The government is making their lives miserable and fearful and we can help them by cooperating with things like "pee tests". These medical professionals, whom are often criticized in these message boards, are our saviors and a the only people who stand between us and misery. It takes a lot of courage to treat pain patients in the current environment.

Take your meds as directed and don't use street drugs and you won't have to worry about withdrawal. If you have a problem with getting your meds it will probably originate with your insurance company and not your doctor.

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@gailb

@saninmich

Hi Sandy and welcome to Mayo Connect! I noticed that your posts have not gotten a lot of responses, so I wanted to let you know I'm following you. I'm a Volunteer Mentor and not a medical professional so I can't give diagnoses or medical advice. I do offer my experience, knowledge, and support.

I'm also responding to your latest post about shoveling snow when you first injured your back. Number 1, my recommendation is that you stop mowing or doing anything that causes you pain in your back! Don't lift anything that weighs more than 5 or 10 pounds either. Don't bend over to pick things up, instead stoop down using your knees, thighs and legs. If you can't do that, let someone else pick things up for you. You are going to need to accept that there are limits to the physical things you can do now.

Back injuries are serious stuff, and you don't want to cause yourself further problems in the future. If you haven't had an MRI, CT scan and/or x-rays of your spine yet, I recommend you ask your doctor to do those – my preference is an MRI as it shows both tissues and bones. You may have a bigger problem and you need to know what's going on in your back and nerves.

Since chiropractic seems to help, I would say continue it, but check with your doctor first. If your doctor doesn't want to do the MRI, etc., then either ask for a referral to a neurologist who can evaluate your back issues, or go to one yourself if you don't need a referral. Just taking pain pills and muscle relaxants treats your symptoms only. When you go, tell them you want the most conservative treatment recommendations for your diagnosis.

I'm making these recommendations from my own experiences with my back. I suffered for many years (35 or so) with lumbar pain, and the last 6 years with neck and arm pain before it got so bad that I ended up in a wheelchair! I finally got an xray in the ER for my neck and arm pain and discovered I had a compression fracture of my C7. No wonder I was in pain! It had already healed, but knowing the cause helps me to take better care of myself and listen to my body.

I was then sent to an orthopedic surgeon to get an MRI and CT scan of my entire spine. I won't go into detail about the mess they found, but it was substantial. After discussing options, I chose to have a laminectomy to remove the piece of my L5-S1 that was impinging on my spinal cord. It was a 2 hour outpatient procedure that provided immediate pain relief for the left side sciatica and nerve pain running down my leg to my toes. Whew!

But, I still had chronic pain on my right sciatic area and down my leg to my toes. I couldn't walk or use steps without extreme pain. However, the surgery for my L4 involves fusing the disks and I really didn't want to do that. Surgeon told me to try everything else to relieve my pain first. So, I tried 2 rounds of PT, acupuncture, massage, and regular chiropractic for no pain relief.

I then read about ART, Active Release Technique, which is a specialized version of chiropractic. The goal is to release muscles and nerves that have gotten bound together due to a trauma. (This sounds like your shoveling incident.) The chiropractic doctor I chose who has many certifications in ART, told me I needed 2 sessions a week for 3 weeks at $600 total. I was nervous above committing to that much money if it didn't work, but I decided to try it. After these sessions I was nearly completely pain free! I continued to get a treatment a month, and now at 1.25 years later, I am still free of that extreme pain. I do have occasional pain, but Tylenol usually takes care of it. If not, I go to my chiropractor for a session of ART. I have withdrawn from all the pain medications I was on, and I feel good. I'm nearly 70 years old.

Please keep in touch and let me know how you're doing and if this post was helpful for you. Gentle hugs. Take care of yourself.

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Gailb Lioness here I finally will know about my back Friday when I go to my neurosurgeon From how you described your laminectomy I might be looking at this as my L5S1 is impinging on my sciatica nerve on left side .

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Hi All,

I've read a lot of your introductions so I know I'm in good company. I have lived in constant pain for 5 years now, both heat and cold pain. I was a mountaineer and apparently I hurt myself playing in the cold for too long, we believe. Sub zero conditions at high altitude for many hours, while, also, having Raynaud's, come to find out is not a good combination for, at least, this body. If I get chilled, even just into high 60s, I can go into a state of pain levels 8-9.5 for days with the only remedy but to heat my core to drastic temps. It caught me by surprise in August when the outside temps dipped to low 60s, and there I was for two days and two nights. I also have FMS as a secondary illness, requiring higher than I'd like doses of Lyrica and Cymbalta and others, just because the nerve damage that's caused during those times when I'm in that level of pain. It's not just in the mind, the body is actually tearing itself to pieces. So, I live at 5-7 pain level, whole body, every nerve, and take as much Opiate as they'll give me, but you have to know, nothing touches Cold Pain (unless you guys or gals know something I don't). I've certainly read all I can on it, and the genes that express it, etc. They are working on drugs to stop it, but will probably charge an arm and leg for them because they are for the certain kind of chemotherapy drug that expresses TRPM8, the cold pain gene (plus another one).

Anyway, I'm not looking forward to winter. I moderate our FMS support group, but I had to tell them what I was thinking that I don't know if I can handle doing this again. Of course they told me to leave the state, blah, blah, so easy to say. I just sent off for Quicken Will maker, but of course I'm a fighter. It's just when I was inside those two days in August, at true 9.5 for the second day, I knew I was ready. Well, I do have a Functional Diagnostic Nutrition doctor is very good and is investigating with me, a few new appointments to go to. Anyone heard of NES? My psychotherapist's dogs tumor magically shrunk to nothing just drinking coded water. What the heck, I'll even try that…

Well, I hope you all find your health and answers, and path to Love.

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@laluzhiker

Hi All,

I've read a lot of your introductions so I know I'm in good company. I have lived in constant pain for 5 years now, both heat and cold pain. I was a mountaineer and apparently I hurt myself playing in the cold for too long, we believe. Sub zero conditions at high altitude for many hours, while, also, having Raynaud's, come to find out is not a good combination for, at least, this body. If I get chilled, even just into high 60s, I can go into a state of pain levels 8-9.5 for days with the only remedy but to heat my core to drastic temps. It caught me by surprise in August when the outside temps dipped to low 60s, and there I was for two days and two nights. I also have FMS as a secondary illness, requiring higher than I'd like doses of Lyrica and Cymbalta and others, just because the nerve damage that's caused during those times when I'm in that level of pain. It's not just in the mind, the body is actually tearing itself to pieces. So, I live at 5-7 pain level, whole body, every nerve, and take as much Opiate as they'll give me, but you have to know, nothing touches Cold Pain (unless you guys or gals know something I don't). I've certainly read all I can on it, and the genes that express it, etc. They are working on drugs to stop it, but will probably charge an arm and leg for them because they are for the certain kind of chemotherapy drug that expresses TRPM8, the cold pain gene (plus another one).

Anyway, I'm not looking forward to winter. I moderate our FMS support group, but I had to tell them what I was thinking that I don't know if I can handle doing this again. Of course they told me to leave the state, blah, blah, so easy to say. I just sent off for Quicken Will maker, but of course I'm a fighter. It's just when I was inside those two days in August, at true 9.5 for the second day, I knew I was ready. Well, I do have a Functional Diagnostic Nutrition doctor is very good and is investigating with me, a few new appointments to go to. Anyone heard of NES? My psychotherapist's dogs tumor magically shrunk to nothing just drinking coded water. What the heck, I'll even try that…

Well, I hope you all find your health and answers, and path to Love.

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Try Gene sight testing, you might get some answers

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@laluzhiker

Hi All,

I've read a lot of your introductions so I know I'm in good company. I have lived in constant pain for 5 years now, both heat and cold pain. I was a mountaineer and apparently I hurt myself playing in the cold for too long, we believe. Sub zero conditions at high altitude for many hours, while, also, having Raynaud's, come to find out is not a good combination for, at least, this body. If I get chilled, even just into high 60s, I can go into a state of pain levels 8-9.5 for days with the only remedy but to heat my core to drastic temps. It caught me by surprise in August when the outside temps dipped to low 60s, and there I was for two days and two nights. I also have FMS as a secondary illness, requiring higher than I'd like doses of Lyrica and Cymbalta and others, just because the nerve damage that's caused during those times when I'm in that level of pain. It's not just in the mind, the body is actually tearing itself to pieces. So, I live at 5-7 pain level, whole body, every nerve, and take as much Opiate as they'll give me, but you have to know, nothing touches Cold Pain (unless you guys or gals know something I don't). I've certainly read all I can on it, and the genes that express it, etc. They are working on drugs to stop it, but will probably charge an arm and leg for them because they are for the certain kind of chemotherapy drug that expresses TRPM8, the cold pain gene (plus another one).

Anyway, I'm not looking forward to winter. I moderate our FMS support group, but I had to tell them what I was thinking that I don't know if I can handle doing this again. Of course they told me to leave the state, blah, blah, so easy to say. I just sent off for Quicken Will maker, but of course I'm a fighter. It's just when I was inside those two days in August, at true 9.5 for the second day, I knew I was ready. Well, I do have a Functional Diagnostic Nutrition doctor is very good and is investigating with me, a few new appointments to go to. Anyone heard of NES? My psychotherapist's dogs tumor magically shrunk to nothing just drinking coded water. What the heck, I'll even try that…

Well, I hope you all find your health and answers, and path to Love.

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@ laluzhikerIt seems so easy to just say move but only if life was so simple non of us would be here talking about resolutions. I do not have experience with your diagnosis but do know what it’s like to be in constant pain and I understand that even the strongest get weary from time to time.

Praying you find relief soon.
Dawn

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@wsh66

Try Gene sight testing, you might get some answers

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Thanks… My FDN doc, as well as my DOM, who follows Ben Lynch and uses his StrataGene report, has run all the genetic profiles against my medications. I'm on High doses as i said, like 400mg of Lyrica, and going higher and 120 of Cymbalta, 150mg of Topirimate, 50mg of Nortripityline, hopefully changing to Amitriptyline and going higher and 40mcg of Fentanyl. No doubt I have PTSD, and I'm somewhat depressed because I'm in pain, but I'm not in pain because i'm depressed. I've got a lot to live for. My back yard is a beautiful zen garden. I pay someone to make it so, if only I could go enjoy it. I want this pin pricking pain to go away so I can go hiking again. That's all. But, I do appreciate the thought. There is just so much they still don't know about neuropathy, and what is happening with this. They've been working on this for a long time. Trench foot, for instance, is Non-Freezing Cold Injury. I assume everyone has heard of that since so many soldiers had that happen to them in World War I. But soldiers, because they get stuck in cold environments , and aren't allowed to leave, have this happen to them frequently, but generally just in their hands or feet. Because of my stupidity, it's all over my body including my thighs and chest. At least my cold sensitivity and the Cold Pain, when it's at it's worst affects me all over. It may just be the TRPM8 going out of control. I don't even want to think about it. Everyone has their burden, I read your stories, and my members have so many issues as well, many having FMS as a secondary illness, as I. But FMS Pain, Primary or Secondary is equally bad, and it has the same mechanisms as the Cold Pain. The only difference is the drugs I listed up there work for FMS. Certainly not 100% Not even 60%. It depends, again, how damaged your nerve cells are. Some of my members can't take medications, and I listen to their stories, and situations they get themselves in, and I want to cry with them. The medical practitioners, at least here, are terrible when it comes to providing care for CSS suffers. All of them have PTSD from having to deal with their doctors. Sorry, I'm hurting. I'm right now laying on a biomat set low at 121F and my electric blanket, all aimed at my lower torso. I sleep with camp boots.
Good Night.

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Good Morning,
Monday is the day I am scheduled to have surgery on L3/4.
I am having a procedure called an x-lift.
This is a kind of fusion.
I understand that this will be more involved than the C5/6 surgery I had.
This surgery will require a hospital stay of 1-3 nights and wearing a back brace.
At this point, I will do just about anything to rid myself of the acute pain, or at the very least, reduce it enough for it to be tolerable!
I contracted a cold from my granddaughter that I am fighting.
When I was at the doc for my pre-op, I was told if it didn't clear up, no surgery!
I've been staying inside all week, trying to stay away from others and trying to rest this thing up.
I have until finally feeling a positive change.
Well, please keep me in your prayers.
Thank you!
Here's to a pain free day!

Ronnie (GRANDMAr)

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@dawn_giacabazi

@ laluzhikerIt seems so easy to just say move but only if life was so simple non of us would be here talking about resolutions. I do not have experience with your diagnosis but do know what it’s like to be in constant pain and I understand that even the strongest get weary from time to time.

Praying you find relief soon.
Dawn

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@dawn_giacabazi
Dawn,
That is what people don't understand when it comes to chronic or acute pain.
I even had this discussion with the nurse practioner the other day.
She says she see a big difference in my overall demeanor.
I tried to explain to her that when you are in pain (regardless of how much), ALL the time, it is exhausting, physically, mentally and emotionally.
It just 'gets' to you.
I would have thought she knew this, but apparently she didn't.
Many people think that just because your pain level is not too high, you should be 'feeling' good.
I suppose what they say about when you can't 'see' the illness, it is difficult for people to understand it.
Guess I should wrap each part of my body that hurts.
This way, people will 'see' the pain.
They'll call me Mummy instead of Mommy. lol

Here's to a pain free day!
Ronnie (GRANDMAr)

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