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.

@jerry4info

I’m jerry4info. I would like to write about my symptoms and read any response I may get.

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Hello @jerry4info, Welcome to Mayo Connect. Connect is a great place to share your health story, ask questions about your concerns, and find out what others with similar health concerns are doing for treatments. Can you tell us about your symptoms and any questions for Connect members you might have?

Also, you may want to take a look at the different discussions under Chronic Pain to see if there is one that matches your health concerns. If you don’t see one, feel free to start a new discussion by clicking the Start A Discussion button at the top. Here is a list of the current discussions:

https://connect.mayoclinic.org/group/pain/

If you want to tag a specific Connect member for a question or to reply to their post, just type their Connect @username and they will be notified of your post.

John

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@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

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I didn’t get them. I basically asked you what I already wrote here. Is it possible to answer whether we can have another form or not for chatting, here. I am not one of the people that particularly wants to chat about my personal life. I want to talk about medical issues whether I have a question or I can add something for another person. I’m just trying to make a suggestion for a way to limit the amount to email coming through in the chronic pain form. Idea why I did not get your email, but I didn’t. Thank you Jennifer

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@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

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Coleen, that link is to the form I filled out already twice. Do you want me to email you again?

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@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

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@hazelblumberg

Hazel,

It’s been a while since I looked into the process of getting MM, but as well as I can remember, the cost here in Oregon is similar to Florida. Around $250 for an annual appointment with the prescriber, $200 for the annual fee for the state, and then the high cost of the weed, which has a huge state tax. I decided I couldn’t afford it.

Jim

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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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@jenapower

I have an account at MediGuard.com. It keeps my list of meds, and gives me the interactions with the other meds. I just check it whenever I change a med.

Jim

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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Hi Marie,
What kind of cyst in your spine did you have? I’m curious because I have perinural/Tarlov cyst at S1-2. I’ve been told to leave it alone. It’s so low down that I don’t feel it unless I sit on a bicycle seat or something.

My Drs are talking about some type of surgery in my cervical spine C4-7, One doctor says three fusions and I’m waiting to see the other doctor to see what he says. They do disc replacement but I can’t find many people who have done this. A three level fusion in my neck does not sound like something I want.

I guess I’m lucky as the pain meds, and anesthesia don’t bother me. Right now I’m recovering from an epidural in my C3-C6 that they did today.

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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Hi I’m Mike. I’ve had 17 back and neck surgeries from 1975 to last year when I broke my neck twice. I developed fibromyalgia after the fifth surgery. The fibromyalgia got worse each surgery.

I found that some medications like hydrocodone, all hydro…s , tramadol and synthetic forms of codeine cause problems like agitation, nervousness and itching. I’ve had chronic pain for many years. The only medication that relieves my pain is morphine. Thanks to all the fear of opioid addiction it’s been difficult to get a prescription.. I only use it when extremely necessary. I use less than the prescribed dosage.

I was a Chemical Dependence counselor and later Executive Director of inpatient and outpatient treatment centers. I taught at one of the major universities on how to manage private nonprofit organizations. So I’m aware of the problems inherent in misuse of drugs.

The problem isn’t with you, it’s with the physicians. You have to communicate every reaction to the medications and anesthesia directly and forcibly to them!!

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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I didn’t answer about the benzo’s. Yes I’ve taken them when nothing else was helping the pain. I don’t want to be hooked on them so I’m tapering off in right now. I’ve had no bad reaction with them but I’ve been extremely careful with what I take. I really don’t think I need them so my doctor told me some people have trouble getting off of them and some people don’t. So far I don’t feel like I do. I’m not sure the best thing to be taking pain medicine.

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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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Thank you Jim, that sounds like a great resource. I’ll look into it. Jennifer

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I’m” 86″ and have had pretty good health along the way.
This problem started months ago, while lifting my body weight up into a big truck several different times.
I had a pain in my arthritic neck, hips, arms, calf & thigh muscles stopped me from doing that.

Went on a paddle boat cruise, I climbed up several flights of stairs to the deck.
The last set of steps were direct upwards, as I stepped up, I pulled my body weight hand over hand up.
Next day my under arms were bright red stinging itchy in a long oval area , with weeping overall, (toxins) BMs had a foul odor, constant urine.
This may seem rediculous but both cheeks of my butt muscles had the same appearance in an oval shape (from forcing my legs to lift). I have seen the same exact symptoms on a medical page I found.
I have abdominal pain along with the: numb tightening muscles, (as I raise my left arm at the shoulder) also tight & some numbness & tingling in the feet, & calves. I regret that I didn’t go to the Dr. right away. Retelling the symptoms, loses the reality of it. When I read about all the symptoms I realized it wasn’t a simple strain.
I think I know what it is but, can’t get anyone to listen long enough to understand what I’m saying.

.

.

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@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

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Today was a difficult one for me. I had an appointment with a hematologist because my pcp doesn’t know what’s caused my iron and hemoglobin levels drop. The appointment wasn’t until 4, and we had spent the day shopping, and my feet were burning, and the arthritis in my hands is hurting. I’m so tired of pain, both physical and mental pain. Then, hearing that what might be wrong could put me through what my sister did, and slowly killed her, but I have to wait for test results from 4 different doctors, deepens my anxiety and depression and suicidal thoughts. I just want to be done with it all, but it never ends. It’s one thing after another. 3 days to go before I see the therapist again. Sometimes, a week is more like 15 days long.

Jim

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Hi Jerry,
What do you think the problem is? What is been the reaction when you tell your doctors what you think it is? Do they have any ideas of their own? Jennifer

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@boourbonman

I promised you all I would let you know when I got approved for Medical Marijuana. Judi and I did it. We then went down to Edgewater FL. and got two 500 mg bottles. $70 each. So we were suppose to start with 5 drops (each drop is a mg.) three times a day and slowly work up to 10 drops 3 times a day. Do the math. 16 days for $70. We are both at 5 drops 3 times a day and no relief. I sure hope it starts to ease our pain. Will Keep you posted.
Hoot

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Hi Jim, sometimes these messages seem all jumbled up by date, I’m not sure why. I guess it’s because we respond to a specific answer, or question.

I understand the depression that constant pain causes. You feel isolated, like you can’t participate in your own life. Probably a dumb question, but are you want any kind of antidepressant? Even for a short period of time until they figure it all out, might be helpful. Also can you not move up your appointment with your therapist if your having a crisis moment?

You’re in the right place. At least there’s people here that understand and probably whether they admit it or not of felt exactly the same way. I know when I’m in really bad pain, I get very down. Fortunately the pain fluctuates and I have a little breather and I feel like myself again. Also having my kids come visit makes a huge difference, they just brighten my world. I’m lucky that one lives close, and the other and his wife will face time me. They kinda are my lifeline, as well as my husband and a few friends that come visit, call or text. Do you have people that will connect with you and real life? Really helps a lot. You have to find ways to distract yourself otherwise you’re kind of a crazy in the situations. My thoughts and prayers go out to you. Jennifer

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@jenapower

Hi Jerry,
What do you think the problem is? What is been the reaction when you tell your doctors what you think it is? Do they have any ideas of their own? Jennifer

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After barely listening, I was told it couldn’t possibly be rhabdomyolysis. Subject dismissed .
What saved me from severe toxins, I had a BM problem and was keeping the movement very loose to prevent a blockage. Drank lots of fluid before getting an x-ray. That really helped to get the initial toxins out of my system..
Thank you for your response.

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@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

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I’ve been taking Clonazepam for 11+ years, and have tried all kinds of pain meds. I started morphine sulfate contin a few years ago, and the pain specialist added Cymbalta around the same time. I finished getting off the Cymbalta yesterday, and I’m down to half the amount of morphine I have been taking. I never noticed a problem combining Clonazepam and other pain medication. My therapist told me last week to hold steady on the dosages until I’m through the current stress, so I guess I’ll stay with the dosage of morphine I’m on for awhile.

Jim

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