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.

@cognac

Hello, I follow this group and thought I was already a member. My pain is lower back – S1,2,3 and L4,5 – and is inoperable due to ILD in m lungs. My PCP has agreed to let me try CBD oil. Any safety hints or comments in general would be GREATLY appreciated. @cognac

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Before moving to Texas about 8=months ago I had been using the oil for about 3 yrs. Did not need any pain meds at all. My blood pressure was perfect. My sleep pattern great. I had energy to spare. I had along with my Dr, removed nearly all of my heart drugs. My Dr who is a full on MD signed me up for the Marijuana oil. Since moving back to Texas, I am back on heart drugs and anti depressants. Come on Texas get with it.

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@cognac

Hello, I follow this group and thought I was already a member. My pain is lower back – S1,2,3 and L4,5 – and is inoperable due to ILD in m lungs. My PCP has agreed to let me try CBD oil. Any safety hints or comments in general would be GREATLY appreciated. @cognac

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@cognac, here is also a discussion that centers around chronic pain and medical marijuana. There may be some posts in this discussion you may find useful, https://connect.mayoclinic.org/discussion/chronic-pain-2bd75e/.

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Hello :). First time I’m using a chat for medical reasons. I feel quite desperate and thought I would see if I could tap into this community for help. I was recently diagnosed with hip bursitis. I’m only 42 and sometimes the pain is debilitating. It started on my outer thighs but months later is now more painful on the top of my pelvis bone (highest point) and the groin area which sometimes swells up. I have angioadema (my lower lip swells and I get a rash). I was also diagnosed with fibromyalgia a few years ago. I am fortunate that this condition flares up now and again and is not something that I suffer everyday. I do get very tired – I am finding it hard to stay awake during the day. To add to all this I have 7 uterine fibroids. And also restricted blood flow in both lower legs which can make standing still and flying very painful. Such a variety of conditions but I cannot figure out whether any of these could be related or am I just incredibly unlucky ???!!!! If anyone has any insights I would be very grateful. I am aware that I do have some IgG intolerances to certain foods and recently stopped eating dairy. tips on handling chronic pain and tiredness would be greatly appreciated. Thank you so much

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You might try going gluten free for a month. It helps with many skin conditions. I saw a new Post Cancer/Lymphedema doctor yesterday who prescribed heavy exercise, aerobic and weight training as a solution to the somnolence, (tiredness), that Chemo and Cancer leave you with. I also use Adderall. Once you get used to adderall you really don't notice your taking it and the crash goes away. She didn't think much of the Adderall. Celebrex is great for reducing swelling and a gluten free diet will also reduce swelling. Lyrica is good for Fibromyalgia and other forms of pain from over active nerves. Chronic pain is still best dealt with with Opiods if it's too serious for Tylenol. If your going to hurt for the rest of your life you might look into a pain pump. I have one and it's the best thing that ever happened to me. I used to eat 252 mg. of various narcotics per day. Now I get 2.75 mg. to 3.75 mg of dilaudid delivered directly to my spine. That is 300 times more effective than eating the same amount. Message me if you need more help.

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@wsh66

You might try going gluten free for a month. It helps with many skin conditions. I saw a new Post Cancer/Lymphedema doctor yesterday who prescribed heavy exercise, aerobic and weight training as a solution to the somnolence, (tiredness), that Chemo and Cancer leave you with. I also use Adderall. Once you get used to adderall you really don't notice your taking it and the crash goes away. She didn't think much of the Adderall. Celebrex is great for reducing swelling and a gluten free diet will also reduce swelling. Lyrica is good for Fibromyalgia and other forms of pain from over active nerves. Chronic pain is still best dealt with with Opiods if it's too serious for Tylenol. If your going to hurt for the rest of your life you might look into a pain pump. I have one and it's the best thing that ever happened to me. I used to eat 252 mg. of various narcotics per day. Now I get 2.75 mg. to 3.75 mg of dilaudid delivered directly to my spine. That is 300 times more effective than eating the same amount. Message me if you need more help.

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Sorry your suffering so much have you seen a specialist orthopedic Dr.,pain Dr ,rheumatologist all are good for what you have Ice is good for hip, heat or hot showers for fibro,muscle rubs Tens unit for muscles Epsom salt bath very good there is also a rub that's Epsom Salts good luck

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@hopeful33250

Hello @gerryg

I see that this is your first post on Connect – I would like to welcome you. I appreciate your post regarding back pain. Have you already had back surgery?

I understand that you are now interested in having the battery powered device implanted to help with your pain. I am glad to hear that you are seeking a second opinion. This is always a wise choice. In considering a second opinion I would encourage you to look for a large medical/research facility such as a university medical center or a facility like a Mayo Clinic.

We have some members who have had the implant with good results. I would like to invite @jimhd who is a volunteer mentor to share his experiences with the implant. Here is the link to a discussion group where this implant is discussed, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/?pg=3#comment-95485 Please read through these posts and see what others have experienced.

I look forward to hearing from you again.

Teresa

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Our history is almost identical. I have fought back issues since I was in grade school, and I’m now 64. Five years ago I had no choice but to have surgery, 4 lumbar fusions. Next it was 2 cervical fusions, which cracked 1 year later. When they went in to repair those, the other disc “crumbled”, I came out with 5 fusions, 2 rods and a cage. I do injections but they don’t long. I see a chiropractor who helps temporarily. I have just started therapeutic massage. Just last week, after a massage, injection, and chiro djustment…I had FIVE days that I could stand up straight!! It felt so good! I am finishing up my psychological testing so I can at least try the pain stimulator. I am also gathering info on Mayo and Kansas University Med Ctr. There isn’t a pill, patch, rub, ice, heat, I haven’t tried with little or no relief. I also have bad restless leg which is becoming unbearable. I am also that group. I am a new member here but can already see it is going to be beneficial and interesting. One more tid bit of info: my mom delivered me and dropped me in the process so she takes all the blame for all my back problems. Possible, but that’s beside the point.

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@gerryg

I am 72 years old and quite active usually walk 2-3 miles a day and do some exercise 15 minutes for back pain surgeon recently said i have arthritis and he can’t help,except to put a battery powered wire in my back .i’am not happy with that i can’t take pain pills because of other problems
I am looking at getting a second opnion.

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WHAT IS THE DIFFERENCE BETWEEN A PAIN PUMP & PAIN STIMULATOR?

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@hopeful33250

Hello @gerryg

I see that this is your first post on Connect – I would like to welcome you. I appreciate your post regarding back pain. Have you already had back surgery?

I understand that you are now interested in having the battery powered device implanted to help with your pain. I am glad to hear that you are seeking a second opinion. This is always a wise choice. In considering a second opinion I would encourage you to look for a large medical/research facility such as a university medical center or a facility like a Mayo Clinic.

We have some members who have had the implant with good results. I would like to invite @jimhd who is a volunteer mentor to share his experiences with the implant. Here is the link to a discussion group where this implant is discussed, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/?pg=3#comment-95485 Please read through these posts and see what others have experienced.

I look forward to hearing from you again.

Teresa

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@dizzydaisy

It is good to have you here at Mayo Connect. We have many Members who will undoubtedly post with you. It sounds as if you have worked hard to achieve some pain control. It can be a very difficult thing though as we all know. I am glad that you had some days of "standing up straight." That must have felt good!

We have a number of Members who have tried the implanted stimulator for pain control. They will probably be checking in with you.

I look forward to hearing from you again as you investigate the use of the stimulator.

Teresa

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@gerryg

I am 72 years old and quite active usually walk 2-3 miles a day and do some exercise 15 minutes for back pain surgeon recently said i have arthritis and he can’t help,except to put a battery powered wire in my back .i’am not happy with that i can’t take pain pills because of other problems
I am looking at getting a second opnion.

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Hi @dizzydaisy — the pump injects medication, the stimulator is like a TENs unit. Here's some info from the Spine Health website:

https://www.spine-health.com/treatment/pain-management/spinal-cord-stimulators-and-pain-pumps-implantable-systems-neuropathy

John

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@cognac

Hello, I follow this group and thought I was already a member. My pain is lower back – S1,2,3 and L4,5 – and is inoperable due to ILD in m lungs. My PCP has agreed to let me try CBD oil. Any safety hints or comments in general would be GREATLY appreciated. @cognac

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@gailb, Where do you buy your oil? On-line? Amazon.com? Health Food or Natural Herb stores? Regular pharmacies? Thanks.

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@hopeful33250

Hello @gerryg

I see that this is your first post on Connect – I would like to welcome you. I appreciate your post regarding back pain. Have you already had back surgery?

I understand that you are now interested in having the battery powered device implanted to help with your pain. I am glad to hear that you are seeking a second opinion. This is always a wise choice. In considering a second opinion I would encourage you to look for a large medical/research facility such as a university medical center or a facility like a Mayo Clinic.

We have some members who have had the implant with good results. I would like to invite @jimhd who is a volunteer mentor to share his experiences with the implant. Here is the link to a discussion group where this implant is discussed, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/?pg=3#comment-95485 Please read through these posts and see what others have experienced.

I look forward to hearing from you again.

Teresa

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@grandmar Hi Ronnie,
I'm sorry to read that the last lumbar injections didn't work for you.I would be very discouraged. How are you dealing with it? Over the past 8 years in particular, I have had so many injections I feel like a pin cushion. One thing I did find was that only one type of steroid worked to relieve my pain.Of course, now that I'm thinking of the name it's not coming to me. It begins with an M.
Hopefully today you are feeling a bit better!
Jen

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@parus

Maybe those who do not live with chronic (and severe) pain do not grasp the concept of hurting all the time. It is hard for me to understand how it is others can keep doing and going. I somehow have it in my mind that everyone hurts like I do, but can keep going-does this make sense? I see others having quality of life and tell myself I am weak because I cannot overcome the pain. Argh, talking in a circle.

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@JustinMcClanahan Your words are so true. Those of us that experience chronic pain are in no way weak. Sometimes I think I am stronger I have this hurdle to deal with all the time. That was not always the case as I think it is something learned. As a society we tend to believe the negative and not the positive. I'm not sure why that is but if anyone has an idea I'd love to hear it..
Thanks Justin for sharing your story with us. It means a good deal to Connect.

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@hopeful33250

Hello @gerryg

I see that this is your first post on Connect – I would like to welcome you. I appreciate your post regarding back pain. Have you already had back surgery?

I understand that you are now interested in having the battery powered device implanted to help with your pain. I am glad to hear that you are seeking a second opinion. This is always a wise choice. In considering a second opinion I would encourage you to look for a large medical/research facility such as a university medical center or a facility like a Mayo Clinic.

We have some members who have had the implant with good results. I would like to invite @jimhd who is a volunteer mentor to share his experiences with the implant. Here is the link to a discussion group where this implant is discussed, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/?pg=3#comment-95485 Please read through these posts and see what others have experienced.

I look forward to hearing from you again.

Teresa

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Can you try to remember the steroid name starting w M? I was going to ask for that. Pretty soon they will stop allowing steroids

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@parus

Maybe those who do not live with chronic (and severe) pain do not grasp the concept of hurting all the time. It is hard for me to understand how it is others can keep doing and going. I somehow have it in my mind that everyone hurts like I do, but can keep going-does this make sense? I see others having quality of life and tell myself I am weak because I cannot overcome the pain. Argh, talking in a circle.

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Parus. I agree with your words. I will never understand why constant pain is something that is not understood even by Drs who refuse to give you a stronger pain med. My primary Dr said quality of life I's important. What does that mean to her. I am allowed tramadon 50 mh.

Liked by grandmaR

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@hopeful33250

Hello @gerryg

I see that this is your first post on Connect – I would like to welcome you. I appreciate your post regarding back pain. Have you already had back surgery?

I understand that you are now interested in having the battery powered device implanted to help with your pain. I am glad to hear that you are seeking a second opinion. This is always a wise choice. In considering a second opinion I would encourage you to look for a large medical/research facility such as a university medical center or a facility like a Mayo Clinic.

We have some members who have had the implant with good results. I would like to invite @jimhd who is a volunteer mentor to share his experiences with the implant. Here is the link to a discussion group where this implant is discussed, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/?pg=3#comment-95485 Please read through these posts and see what others have experienced.

I look forward to hearing from you again.

Teresa

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Hi Jen @sandytoes14, is it methylprednisolone?

https://www.nhs.uk/conditions/steroid-injections/

John

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