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.

Hello! I am so excited that Mayo has discussion groups like this; I had no idea. As usual, though, I typed Mayo and CBD to research more about what the experts have to say about treating chronic pain with CBD, and I found you. I’m looking forward to learning more about how to use CBD to treat my pain. Thank you for providing this service!

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I am Marylou8 and have a new post for the Autoimmune Group. I also have a thyroid problem, treated with levothyroxine. But now my hair is falling out and so fatigued it is hard to get out of bed. I suspect this is a thyroid issue, tho I get it checked regularly. I usually post to Sjogrens.

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@gal_in_kalamazoo

Hello! I am so excited that Mayo has discussion groups like this; I had no idea. As usual, though, I typed Mayo and CBD to research more about what the experts have to say about treating chronic pain with CBD, and I found you. I’m looking forward to learning more about how to use CBD to treat my pain. Thank you for providing this service!

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Welcome, @gal_in_kalamazoo . There’s been a fair amount of discussion on the subject of CBD. You can look through the list of discussions and find threads to follow. As it’s past my bedtime, I’ll let others comment further.

Jim

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@gal_in_kalamazoo

Hello! I am so excited that Mayo has discussion groups like this; I had no idea. As usual, though, I typed Mayo and CBD to research more about what the experts have to say about treating chronic pain with CBD, and I found you. I’m looking forward to learning more about how to use CBD to treat my pain. Thank you for providing this service!

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Welcome @gal_in_kalamazoo, thank you for joining Connect and introducing yourself.

We are glad that you found us by searching the web. Based on your interest, I think you may want to check out the following discussion that is centered entirely around chronic pain and CBD, https://connect.mayoclinic.org/discussion/cbd/. If you are replying by email, I highly recommend clicking on VIEW & REPLY at the bottom of your notification and using a web browser to read and reply on Connect, it just makes sifting through the discussions much more clear. In the CBD discussion you will meet many other members who share your common interest. I look forward to more posts from you.

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@marylou705

I am Marylou8 and have a new post for the Autoimmune Group. I also have a thyroid problem, treated with levothyroxine. But now my hair is falling out and so fatigued it is hard to get out of bed. I suspect this is a thyroid issue, tho I get it checked regularly. I usually post to Sjogrens.

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Hello @marylou8,

I see that you wanted to make a new post to the Autoimmune Group. To do that, go to the group by clicking this link, https://connect.mayoclinic.org/group/autoimmune-diseases/.

You may also want to check out this discussion on thyroid issues where members are discussing levothyroxine, https://connect.mayoclinic.org/discussion/thyroid-issues-1/. Just click on the link and you will be taken to the discussion and I recommend posting your question to the members in that discussion. If you are replying by email, I suggest clicking on VIEW & REPLY or the links I provided above so that you can more easily navigate the discussions.

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@hazelblumberg

I developed earaches in September 2016. My primary care found no ear or sinus infection and sent me to an ENT, who diagnosed TMJ pain. I went to my dentist for help. He gave me weekly anesthesia shots into trigger points (OUCH!) and exercises to do, including massaging the trigger points and opening my mouth as wide as I could numerous times in the shower while my face was warm and wet. (I have been wearing a night guard made by my dentist for over 20 years; he replaces them as they wear out.) The pain continued and only got worse; it was at the top of my head, in my ears, in my jaw, above my palate (as though I’d eaten hot food). My dentist sent me to an oral surgeon, who did 360-degree x-rays and found no joint damage. He told me I was therefore not a candidate for surgery (YAY!) and prescribed Flexeril, a muscle relaxer. The pain only got worse, and I continued to wake up in the night with horrific pain. Ibuprofen didn’t even touch it.

My dentist then sent me to a physical therapist, who didn’t listen to a word I said. I came in on a “good” pain day: my pain level was about a 5 out of 10 (10 being the worst). After his examination and showing me how to do various exercises, he triumphantly told me that my pain level was now reduced. I said “No. My pain level is now about 7.5.” He said he didn’t believe me. He attempted to push me to go to his outside clinic to get “magnet therapy,” and he tried to push me to see a friend of his who is a naturopath. Two days after this session, I was still in excruciating pain and doubt I’d ever return to this physical therapist, although he had me schedule 4 more 1-hour sessions with him.

I called my dentist again, and he called in a prescription for Tylenol plus codeine, which I can take every 4 to 6 hours. My dentist seems to have no further solutions for me.

My primary care is currently out of town, but I will see her when she gets back (in August); she may be referring me to a pain management specialist, which my dentist recommended–however, my dentist refuses to give me a referral to such a specialist, even though the specialist will take referrals from dentists or doctors.

I have been treated for many years for clinical depression and panic/anxiety disorder by my psychiatrist, and the meds have helped me immensely. On Monday I see my psychiatrist for my usual 6-month med check, and I’m going to ask him for help with the terrible TMJ pain. I have also had fibromyalgia and chronic fatigue syndrome for a long time. The fibro pain has greatly lessened over time and hardly bothers me, but the CFS continues.

The TMJ pain makes it difficult to concentrate. I’m self-employed, and I enjoy my work. But pain gets in the way, as it does in every single situation: work or pastimes. My dentist mentioned massage therapy, but I’m in too much pain right now to try it. Another friend mentioned using a TENS unit. I feel as though I’m not living; to be in constant pain is hardly living, at least to me.

Any other suggestions? Would a TENS unit help? I’m more than willing to purchase one. I’ll try just about anything to be pain free. Sometimes I am pain free. But I spend about 2 weeks out of every month in serious pain. I am feeling very discouraged.

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Hey @JustinMcClanahan, have you had pharmacogenomic (PGx) testing done?

Pain meds don’t work for me because I’m a slower metabolizer (genotype status level Poor for the enzyme CYP2D6, which the body uses to fully- or partially-metabolize most pain meds).

Here are the metabolizer statuses for each enzyme:
Poor < Intermediate < Normal (Extensive) > Rapid > Ultra Rapid

I’m willing to bet you’re a fast metabolizer by genotype (rapid or ultra rapid) for at least one of the enzymes that metabolizes Dilaudid. (Dilaudid is metabolized by five enzymes, three of which (CYP3A4, CYP2C9, and CYP2D6) are included in the standard PGx test sets like the ones provided by Mayo and Oneome.)

When doctors prescribe meds, they will assume that a patient is a Normal metabolizer unless they are provided with info like I have (and then they usually just become confused and somewhat scared, except for my Mayo doctors).

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My name is Marilee.and I have lived with chronic pain for 11 years somewhat successfully but now.I have breast cancer and developed.arthritis on top of my chronic pain from neck surgery in 2006. Any tips for.bone on bone arthritis in knees?

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@hazelblumberg

I developed earaches in September 2016. My primary care found no ear or sinus infection and sent me to an ENT, who diagnosed TMJ pain. I went to my dentist for help. He gave me weekly anesthesia shots into trigger points (OUCH!) and exercises to do, including massaging the trigger points and opening my mouth as wide as I could numerous times in the shower while my face was warm and wet. (I have been wearing a night guard made by my dentist for over 20 years; he replaces them as they wear out.) The pain continued and only got worse; it was at the top of my head, in my ears, in my jaw, above my palate (as though I’d eaten hot food). My dentist sent me to an oral surgeon, who did 360-degree x-rays and found no joint damage. He told me I was therefore not a candidate for surgery (YAY!) and prescribed Flexeril, a muscle relaxer. The pain only got worse, and I continued to wake up in the night with horrific pain. Ibuprofen didn’t even touch it.

My dentist then sent me to a physical therapist, who didn’t listen to a word I said. I came in on a “good” pain day: my pain level was about a 5 out of 10 (10 being the worst). After his examination and showing me how to do various exercises, he triumphantly told me that my pain level was now reduced. I said “No. My pain level is now about 7.5.” He said he didn’t believe me. He attempted to push me to go to his outside clinic to get “magnet therapy,” and he tried to push me to see a friend of his who is a naturopath. Two days after this session, I was still in excruciating pain and doubt I’d ever return to this physical therapist, although he had me schedule 4 more 1-hour sessions with him.

I called my dentist again, and he called in a prescription for Tylenol plus codeine, which I can take every 4 to 6 hours. My dentist seems to have no further solutions for me.

My primary care is currently out of town, but I will see her when she gets back (in August); she may be referring me to a pain management specialist, which my dentist recommended–however, my dentist refuses to give me a referral to such a specialist, even though the specialist will take referrals from dentists or doctors.

I have been treated for many years for clinical depression and panic/anxiety disorder by my psychiatrist, and the meds have helped me immensely. On Monday I see my psychiatrist for my usual 6-month med check, and I’m going to ask him for help with the terrible TMJ pain. I have also had fibromyalgia and chronic fatigue syndrome for a long time. The fibro pain has greatly lessened over time and hardly bothers me, but the CFS continues.

The TMJ pain makes it difficult to concentrate. I’m self-employed, and I enjoy my work. But pain gets in the way, as it does in every single situation: work or pastimes. My dentist mentioned massage therapy, but I’m in too much pain right now to try it. Another friend mentioned using a TENS unit. I feel as though I’m not living; to be in constant pain is hardly living, at least to me.

Any other suggestions? Would a TENS unit help? I’m more than willing to purchase one. I’ll try just about anything to be pain free. Sometimes I am pain free. But I spend about 2 weeks out of every month in serious pain. I am feeling very discouraged.

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I haven’t actually. But, maybe I should. I will have to have my right ankle fused within the next 3-5 years, so I know for certain I will need pain medications again. Maybe this time around it would be better to go in with a little more knowledge about how I process medications so I don’t bottom out so quickly and get behind the pain. Luckily, I have always been able to ween myself of pain medications with my physicians and have not had any hints of addictions, but this information could be helpful for certain.

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@marileeg

My name is Marilee.and I have lived with chronic pain for 11 years somewhat successfully but now.I have breast cancer and developed.arthritis on top of my chronic pain from neck surgery in 2006. Any tips for.bone on bone arthritis in knees?

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Welcome to Connect, @marileeg . Chronic pain is surely a difficult challenge. Sometimes, it seems as though one ongoing pain competes for our attention over 1 or 2 others. One of the first questions nurses ask before the doctor comes into the exam room is “how would you rate your pain? ” Which one do you want me to rate!?!

I’m sorry arthritis has been added to the mix, Marilee. I hope you find the right answers soon.

Jim

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@marileeg

My name is Marilee.and I have lived with chronic pain for 11 years somewhat successfully but now.I have breast cancer and developed.arthritis on top of my chronic pain from neck surgery in 2006. Any tips for.bone on bone arthritis in knees?

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Hello @marileeg, I would like to add my welcome to Jim’s.

Thank you for sharing a bit about yourself with the other members of the Chronic Pain group. I think there are a few other groups and discussions that you may want to check out based on what you shared about yourself. If you click on the following links, you will be brought to groups and discussions that you will be able to meet other members experiencing similar issues and challenges as yourself:

– Breast Cancer, https://connect.mayoclinic.org/group/breast-cancer/
– Stem cell therapy for arthritic knees, https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-arthritic-knees/
– After knee replacement surgeries, https://connect.mayoclinic.org/discussion/after-knee-replacement-surgery/

Each of the above discussions have members who have talked about having arthritic knees or breast cancer. I look forward to seeing more posts from you!

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Hi . I’m Judy -70 years old and diagnosed last November with an idiopathic thoracic spinal syrinx. I have suffered baffling pain symptoms most of my life and finally an MRI confirmed the condition. I have been grappling with chronic stabbing nerve pain and my neurologist /pain management doctor prescribed Gabapentin which I tried for 6 months with many side effects and little relief. I am now on 200 mg of Lyrica and hoping to get some sustained pain relief. I also get acupuncture, massage weekly and have gone to PT for 2 months! I would appreciate any input from members who may be familiar with this rare condition. Thanks

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Hello Judy, @jujubbb Welcome to Mayo Connect. We appreciate your post about this rare condition. I’m sure that you must feel some relief to at least have a label to put on this chronic pain condition, especially given the fact that it is so rare. While I don’t know if any of our Mayo Connect Members have this specific condition, we have a lot of people who deal with chronic pain. I’m inviting @johnbishop, a volunteer mentor, who also deals with chronic pain.

Has your doctor offered you any other treatment plans other than meds? Is physical therapy an option for you? We look forward to getting to know you better.

Teresa

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@hopeful33250

Hello Judy, @jujubbb Welcome to Mayo Connect. We appreciate your post about this rare condition. I’m sure that you must feel some relief to at least have a label to put on this chronic pain condition, especially given the fact that it is so rare. While I don’t know if any of our Mayo Connect Members have this specific condition, we have a lot of people who deal with chronic pain. I’m inviting @johnbishop, a volunteer mentor, who also deals with chronic pain.

Has your doctor offered you any other treatment plans other than meds? Is physical therapy an option for you? We look forward to getting to know you better.

Teresa

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I have been going to physical therapy along with massage and acupuncture — some temporary relief. Doctor says no treatment for syrinx other than pain management. Luckily, I do not have neurological deficits, just pain.

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Judy, @jujubbb I’m sure the chronic pain is more that enough – not having the neurological deficits is certainly a plus, though. Does this disorder often result in cognitive deficits or problems using your limbs?

Teresa

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@hopeful33250

Judy, @jujubbb I’m sure the chronic pain is more that enough – not having the neurological deficits is certainly a plus, though. Does this disorder often result in cognitive deficits or problems using your limbs?

Teresa

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Some people have numbness in limbs –feet/hands. It can progress to paralysis. Shunting is the only surgical procedure but very risky and poor results.

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