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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@colleenyoung

Hi @karen00, we're here. We're listening.
Can you think of soothing things that have worked for you in the past to help reduce the pain or distract you from it? I'm not dismissing your anguish and pain, but acknowledging it. With the limitation on medication for you right now, can you focus on alternatives: deep breathing, a walk in nature, talk with a friend?

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@colleenyoung Hi Colleen, thanks for writing! I do use Connect to keep from feeling so isolated. I journal. I’m dealing with a bad knee that became injured when I fell. I appreciate yout listening

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@karen00

@grandmar. Hi Ronnie! I need to talk! I am going through some awful pain and feel like I can’t take much more of this. I am tired of crying and moaning. I have pain meds, but they are too little to help. I purchased some CBD oil, but then was diagnosed with a clot in my lung and was told not to take anti inflammatories. I know CBD oil works on an anti inflammatory level so I desperately want to try it but am afraid. So I cry instead. I just can’t be positive when I’m feeling so down!

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@karen00 CBD oil has vitamin K in it. That would thickens your blood. If you have a PE already, you should not be taking it without talking to your anticoagulation clinic. I'm assuming you are on a blood thinner due to the clot.

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@karen00

@grandmar. Hi Ronnie! I need to talk! I am going through some awful pain and feel like I can’t take much more of this. I am tired of crying and moaning. I have pain meds, but they are too little to help. I purchased some CBD oil, but then was diagnosed with a clot in my lung and was told not to take anti inflammatories. I know CBD oil works on an anti inflammatory level so I desperately want to try it but am afraid. So I cry instead. I just can’t be positive when I’m feeling so down!

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@karen00
Hi Karen,
So sorry you are having such a bad day! I know how you feel. I've had many days where all I did was cry, cry and cry some more! I also had very little relief from the pain. One thing I learned was that it is important for you to stay ahead of the pain by taking the pain meds before the pain gets uncontrollable. I hated taking the pain meds, I was afraid of getting addicted, so I didn't take them as often as I should have. As a result, the pain would become HORRIBLE!!! When I started to take it more often, it worked better. I cannot take NSAIDs, either. I had weight loss surgery and NSAIDs are not allowed. Now, other than pain meds, all I can take is Tylenol type meds.

As far as CBD oil, I really cannot give you any guidance. I have never used it nor do I think I will, not anytime in the future. There is no real reason, it's just not on my list. There are several people in the group who use it and would be able to help you. As far as I read, there is nothing to be afraid of. Still, I suggest you do your own research so that some of your questions can be answered. Put out your questions and I am sure you will get many responses.

In the meantime, there are a few things you should try, when you can:
*Take your meds as prescribed.
*Take a soak in a nice warm tub. Add oils or salts with a nice relaxing aroma.
*When you are having a good day, take advantage of it. Go out and do something nice for yourself like a mani/pedi or shop. If that is not your thing, do something you miss doing when you don't feel well.
*Don't overdo when you are having a good day.
*When I began with my last pain doc, he hooked me up with a therapist that specializes in patients with chronic pain. If you have that ability with your insurance, it is worth the try!!!!!
*The more you move, the better you will feel! Go to a store where the weather won't impact you. Go to one that has shopping carts for you to hold on to. You'll be surprised how much better you will feel in a few days. I know, I know, how do you walk when you have pain?? Gingerly and slowly. You may only take a couple of steps to start, but that is OK.
*If your insurance allows it and you can get a script, try aquatic PT. The warm water is great. If not that, look for an aquatic program giving by the American Arthritis Foundation.

I hope this helps. I am glad you wrote!
Feel good!
Ronnie (GRANDMAr)

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@grandmar

@treglaser
First, let me assure you that you are NOT whining. You are frustrated as many of us are or have been!! I have had Fibromyalgia for many, many years. I cannot tell you how many docs did NOT believe it even existed! It was my doctor's wife (who was a dentist) who had an article in her dental journal.

HERE IS MY PERSONAL OPINION
I believe to start with your PCP and to keep your PCP fully up to date with all you are going through. Today, many doctors have some sort of a portal where you can email. This is a good way to keep him/her up to date without having to pay for another visit.
As far as seeing specialists, I SUGGEST a couple of things.....
1. Do your OWN research. There are at least 4 sites that rate doctors based on patient opinions. For me, that is more important since the treatment patients receive would be more like what I would receive. It appears to me that docs treat docs better. Anyway, I only deal with docs that have the highest possible ratings. Sometimes, lower ratings are due to the office staff. Although they do not take physical care of you, they do care for lots of things you would need them for. Therefore, if the staff gets a poor review, I also stay away from the doc.
I am willing to travel (by car) 1 - 2 hours to get the BEST medical care.
2. If possible, try to get into a 'medical group' that has multi specialities. This was, you might be able to see partners who can access your records easily. This is also true for doctors who are a part of a hospital or medical group like Kaiser Permanente.

Finally, there is no need to feel embarrassment. More people are experiencing doc visits as you are. As far as emotional hurt and disappointment, move ahead and find someone else who might be able to help you. Dealing with health issues is a journey, not a sprint. It takes time to find the right people who can help you. They are out there! Sadly, it takes time and good insurance. We are here to support you so when you are having a bad day, just jump on line and vent.

In the meantime, perhaps there is someone in this group who lives near you who might have some recommendations.

PS...Just remember that this is NOT your fault. It is NOT the fault of anyone.

Good luck and I pray you have a pain free day,
Ronnie (GRANDMAr)

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@grandmar this is good information I too belong to a medical group Healthcare partners the groups have investigated there Dr,s only getting the best I hope this does help others. @tregleaser I wish you the best in your search.

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I have a problem with some of the posts I've seen lately, including my own. It was my understanding that we were not to give advice of things that a person should do in this setting. Rather we should relate what has worked for us and let others decide if they want to pursue those routes or not. I recently very emphatically told someone they should look into getting a pain pump and what I should have done was said this is the pain pump it works for me and left it at that.

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@karen00, what she said! LOL !!! Yes, by all means, watch Netflix, play your favorite music all day long, read your favorite mystery novel, put on Ben Gay or Aspercreme or Icy Hot, use a frozen pack of peas on your trigger points, order off off Amazon .com, call your first cousin and talk to her for at least twenty minutes, look at your old high school year book and thank the spirits of Heaven that you dress so much better today, go get your hair done by that quirky lady who talks a mile a minute and keeps you entertained, join a fitness club and take the old lady aquatics class, the warm water will do you good. Do whatever self care makes you just a little bit happier. You and I are both in this for the long haul. We must have a medicine pouch like my ancestors had. The Native Americans would have these little necklaces that held a small pouch. Inside the pouch they would put whatever was most meaningful to them. It could be anything really, that inspired them. Something they reassured, loved, drew inspiration from. I offer to you this concept of a Medicine Pouch in all sincerity and love for you, my friend. Self care truly is the best care. You are worth it! You deserve anything and everything that will help you get better. I hope you have a better day today. Smoke signals and prayers for you,

Mamacita

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@wsh66

I have a problem with some of the posts I've seen lately, including my own. It was my understanding that we were not to give advice of things that a person should do in this setting. Rather we should relate what has worked for us and let others decide if they want to pursue those routes or not. I recently very emphatically told someone they should look into getting a pain pump and what I should have done was said this is the pain pump it works for me and left it at that.

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@wsh66 , all is forgiven. If you notice my post earlier, I sort of told a certain lady what to do to try to get to feeling better. I try hard not to do that. I do try to say this worked for me, or that worked for my sister. Sometimes I slip up and say things in not exactly the correct way. I meant well. All we can do is try our best. We can acknowledge our slip up and move on, in the grace that has been given me so many, many times. Bless you for your efforts as you travel this road together with us. We are better together.

Mamacita

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@colleenyoung

Hi @karen00, we're here. We're listening.
Can you think of soothing things that have worked for you in the past to help reduce the pain or distract you from it? I'm not dismissing your anguish and pain, but acknowledging it. With the limitation on medication for you right now, can you focus on alternatives: deep breathing, a walk in nature, talk with a friend?

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@karenOO Im so sorry to hear your so hurting Pain can be difficult If I may ask are you depressed by something? or someone now or a in your past? I was for awhile then worked my way through it with Tapping .This is accupressure same form as accupunctur e There are several people on here that use this to help them.just a thought feel better

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@mamacita

@karen00, I am crying with you. I am so sorry you are in so much pain. My level of pain is obviously not the same as everyone else on here. You know there are actually times when I have no pain? But much of the time I am doing the medicinal do-si-do, in just an attempt to make it through the day. Some of my meds were recalled for causing Cancer. Some of my medicine was making me terribly ill, just as ill as not taking any medicine at all. I have finally got it all worked out to where I use a combination of things that work. All medicines have side effects, and I was a bit foolish, I must admit, to not research the meds more carefully. I have not used CBD oil but there are indeed individuals on here who have. Many have good results. Browse through some of our support groups on here, and see if anything strikes a chord with you. Situations such as ours require a multifaceted approach, indeed, a mixed bag of tricks that we pull out when something stops working. We must never give up! Carefully work with your good doctors, research all you can, and stick with us. We are here for you and want to help you all we can. I want to hear from you as soon as you have a spare moment. By the way, I was diagnosed with Fibro in 1990. So, we have a lot of "war stories" to share. God bless you and keep you. All good thoughts and prayers going out to you.

Love and light,

Mamacita

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@mamacita Thats when I was also with fibromyalgia its been a tough road hasn't it We are all warriors

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@colleenyoung

Hi @karen00, we're here. We're listening.
Can you think of soothing things that have worked for you in the past to help reduce the pain or distract you from it? I'm not dismissing your anguish and pain, but acknowledging it. With the limitation on medication for you right now, can you focus on alternatives: deep breathing, a walk in nature, talk with a friend?

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@colleenyoung Colleen, I am so embarrassed that I don’t even remember how to find my original post. I can’t remember everything I told you. There is so much more going on with me and I have kept it inside all this time. Now I feel ready to share as everyone else has shared. Mamacita also wrote me a wonderful note that I wanted to respond to. It’s the caring that I feel from you guys that makes me feel comfortable. Thanks....more to come!!!...Karen

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