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.

@parus

Hello all!! I just started following…chronic pain is not for whiner’s nor wimp’s. Hoping to learn some things.

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@hazelblumberg Hi Hazel, if you find out anything more about this ear bar please share, I would love to pass the info on to my daughter. Thanks.
JK

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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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@parus I too have spent money trying to get some relief for things and know it was basically wasted but we do what we have to do in desperate times. I’m happy for you that you are now finding some relief.
JK

Liked by lauriedr

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@parus I understand your doctor frustration and wishing you could just go to Mayo. I use Mass General Hospital and since going there I am so conscious of the superior medical care I get there. I live in southern NH (considered to basically a bedroom community to MA’s northern suburbs and even Boston) and when I go to MGH I have to leave a couple of hours for travel time during the day due to traffic. I would love to go there for my PCP but it’s just too far. I just do not really trust the doctors up here anymore. I am sure there are good ones but they are all not accepting new patients, as is mine who I frankly think is burned out.
JK

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@contentandwell

@parus I understand your doctor frustration and wishing you could just go to Mayo. I use Mass General Hospital and since going there I am so conscious of the superior medical care I get there. I live in southern NH (considered to basically a bedroom community to MA’s northern suburbs and even Boston) and when I go to MGH I have to leave a couple of hours for travel time during the day due to traffic. I would love to go there for my PCP but it’s just too far. I just do not really trust the doctors up here anymore. I am sure there are good ones but they are all not accepting new patients, as is mine who I frankly think is burned out.
JK

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Marield65 here. Do you go to Mass General for what kind of pain,back,knee,surgery? I live an hour south of Boston and had my spinal fusion there. Now I may need more back surgery and am considering Boston again. I do have a good surgeon here in Rhode Island but would like to go to Boston for another opinion. Is there a good neurosurgeon there?
Thanks,Marield65

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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 buy any and all supplements, then I try to get them ok’d by .my PCP.. it is best if the dr.writes a Rx for the supplements. In the past, business:has sent all meds to the patient . With gm and their staff, plus the workers, housekeeping, etc., they must know. It is sad that Americans pay lots of moneyfor things that fall. I have planned lawn parties and had to call uninhabited. On the way home,

Many OTC and legit scripted are still dangerous. Paul will have to double his payoff from open If you can’t until our next time together.

Many vitamins endorse what se as fact. The soviets made a tv show.tl llah bdre! I quickly ran through the tow line istill safe.i will pick the kids for dinner.
That is so sweet of you! Not really, he said.

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@sandytoes14

@parus I love your statement “chronic pain is not for whiner’s nor wimp’s” That is so very true! I have had chronic pain for over 20 years now. It’s a marathon. I have many issues causing me pain. Fibro, migraines, spinal stenosis, degenerative disc of C4 -C6, lumbar pain and TMJ.
@hazelblumberg we are glad you found us too! I see John has tagged a discussion about TMJ earlier in this thread. An easy way to find conversations taking place is to go to the very top of your screen and click on the magnifying glass, you can type a search word or terms.

Jen

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@contentandwell Aren’t you sweet! Thanks for thinking I look much younger than you. My daughter inherited my headaches also. I can remember having severe headaches at 9 yrs old. I have vascular and hormonal migraines. I’m on a low dose of Lisinopril for hypertension but it also lessens the frequency and intensity of the migraine. I noticed when I was going through menopause that my headaches were not as bad as when I was young and like you, I rarely get a migraine. Sometimes I get a mild headache from clenching my teeth at night. I think the clenching began a ways back as my neck pain got worse.
Have you or your daughter ever used essential oils as homeopathic relief?
Jen

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@parus

Hello all!! I just started following…chronic pain is not for whiner’s nor wimp’s. Hoping to learn some things.

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So far, I haven’t heard back from the friend whose daughter-in-law got one. I know of someone in town, an RN, who does body piercing, and I’m wondering if he’s the one who did her ear bar. I’m going to go check to see if he has a website.

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@sandytoes14

@parus I love your statement “chronic pain is not for whiner’s nor wimp’s” That is so very true! I have had chronic pain for over 20 years now. It’s a marathon. I have many issues causing me pain. Fibro, migraines, spinal stenosis, degenerative disc of C4 -C6, lumbar pain and TMJ.
@hazelblumberg we are glad you found us too! I see John has tagged a discussion about TMJ earlier in this thread. An easy way to find conversations taking place is to go to the very top of your screen and click on the magnifying glass, you can type a search word or terms.

Jen

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I used to have wicked migraines and after several tests it turned out to be because I was taking pills every time and was getting rebound headaches and he weaned me off them. I was taking fiuricet and Tylenol and now I have relpax in case I get a migraine, take no more than 3 times a week, and now it has been months since I had a migraine. They can be terrible. My sister tried Botox for her migraines and it didn’t work for her. Marield65 here.

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@parus

Hello all!! I just started following…chronic pain is not for whiner’s nor wimp’s. Hoping to learn some things.

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I still haven’t heard from the friend about her daughter-in-law’s experience with the ear bar. I looked up the only certified piercer I know of here in town (Tallahassee, Florida); his business is called Piercings by Bink. He’s also an RN and a licensed massage therapist. I sent him email to ask about ear piercings/bars and would they help TMJ pain.

He wrote back quickly. He told me that he has read no literature and had no experience with ear piercings/bars helping TMJ pain. He said that he doesn’t do massage work relating to TMJ pain but referred me to the person who’s the head of Florida licensed massage therapists, in hopes that she can give me information about who in Florida does this kind of massage. Bink knew of no one in the Tallahassee area who did. Soooooo, I got some information, and I certainly won’t be going the ear-piercing route. (I already have three piercings in one ear and two in the other!) And I thanked Bink profusely. I’ve heard that he’s a totally honest guy and a true professional, and he certainly revealed himself to be so.

Today I saw my psychiatrist for my every-six-month med check (for clinical depression and panic/anxiety disorder). I took up a lot more of his time, because I wanted to talk to him about my TMJ pain and ask what he’d recommend. Turns out that his daughter, who’s 30, has had TMJ pain since she was a teenager, and so far, she’s not had any luck getting help for it. That’s discouraging.

I told him that I was leaving my dentist because he’s been so non-helpful. Once my psychiatrist ascertained that I definitely wouldn’t be going back to this dentist again, he gave me his opinion: if you have any problem that’s slightly out of the ordinary, this dentist does NOT want to help you. (He used to go to the same dentist.) So, he pretty much ignores you and hopes you’ll go away. That’s what’s been going on with my interactions with my dentist, and I’m sending him my official “you’re fired” letter tomorrow.

My psychiatrist did recommend another dentist in town who actually _has_ studied TMJ pain extensively and gotten certification in it. So, when I got home, I looked this dentist up online. Yes, he’s got some sort of official certification/licensure in both TMD and in sleep apnea treatment.

Then I looked at reviews of this dentist. Boy, they were NOT good. A few were positive, but those were written over three years ago. The more recent reviews said the dentist was nothing more than a mouthguard salesperson (I already have a mouthguard, made by my dentist, and I’ve worn one for years; as they wear out, my dentist, er, now ex-dentist, makes another); I wonder if he’d try to talk me into getting his special brand of mouthguard? (I’d refuse.) Other patients said their experiences with this dentist were “bizarre” and “surreal.” He’d hollered at them, sometimes in the waiting room. _Many_ former patients talked about this. Hmmmmmm.

A guy who goes to the same church that my husband does has started going to this dentist for TMJ pain, and yes, the first thing he had to do was buy a mouthguard. Jim had the email address of this guy, so I wrote to him to find out what his experiences with the dentist had been like. I’m eager to hear what he has to say. Given that this dentist doesn’t take our insurance, his website tells me that we’d have to pay everything upfront, and his office would provide us with forms to file with our insurance provider. Sounds VERY expensive. Of course, if it works, that’s terrific. But if it’s a nightmare scene, then I don’t want to even go to him. One doctor I went to years ago yelled at me, and I stood up and towered over him (he was very short) and yelled right back at him. I told him that no doctor has permission to yell at me or any other patient, and that I was definitely NOT paying him for this visit. And I left.

I swear: is everyone in the medical profession nuts?

Hazel

Liked by Parus

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@contentandwell

@marield65 Hi Marie. I have a friend who has seen a couple of back surgeons, I will ask her what her prognosis and which she is going with. I forget which hospital the original one is at, I think possibly New England Baptist, but the one she was considering more strongly I believe is at Mass General. With her there is a question of whether surgery is the correct course of action so of course she wants to make absolutely sure to choose the right one. The first one was all about surgery.
JK

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Content and well, thank you for that information. I just found out today that my neurosurgeon is going to try back shots again (different back problems) and see how long we can put off surgery because the pain I am getting is coming from a pinched nerve from L5 and where I will need surgery is a fusion from L3 to L5, but I am not getting pain in that area, but my discs are rubbing and bulging. I don’t know if that makes sense to you but my neurosurgeon is very conservative and I agree with him wanting to wait..Marield65

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@sandytoes14

@parus I love your statement “chronic pain is not for whiner’s nor wimp’s” That is so very true! I have had chronic pain for over 20 years now. It’s a marathon. I have many issues causing me pain. Fibro, migraines, spinal stenosis, degenerative disc of C4 -C6, lumbar pain and TMJ.
@hazelblumberg we are glad you found us too! I see John has tagged a discussion about TMJ earlier in this thread. An easy way to find conversations taking place is to go to the very top of your screen and click on the magnifying glass, you can type a search word or terms.

Jen

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@marield65 Marie, I can sympathize totally having also been a migraine sufferer. Thankfully mine were not multiple times a month, at most they were two a month but those two would last from 3 to 4 days. Honestly, I think that was the worst pain I have ever been through, more than after surgery pain, and more than childbirth. I really wanted to go back to work part time but I couldn’t because I knew the migraines would interfere. My daughter has them now and a few times she has not been able to work for three or four days. It’s the pits, for sure.
JK

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@sandytoes14

@parus I love your statement “chronic pain is not for whiner’s nor wimp’s” That is so very true! I have had chronic pain for over 20 years now. It’s a marathon. I have many issues causing me pain. Fibro, migraines, spinal stenosis, degenerative disc of C4 -C6, lumbar pain and TMJ.
@hazelblumberg we are glad you found us too! I see John has tagged a discussion about TMJ earlier in this thread. An easy way to find conversations taking place is to go to the very top of your screen and click on the magnifying glass, you can type a search word or terms.

Jen

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@marield65 By the way Marie, I see you have posted that you are south of Boston but even if you had not said that I would know you are from the area since you used “wicked”. Definitely a Boston term. 😉
JK

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@sandytoes14

@parus I love your statement “chronic pain is not for whiner’s nor wimp’s” That is so very true! I have had chronic pain for over 20 years now. It’s a marathon. I have many issues causing me pain. Fibro, migraines, spinal stenosis, degenerative disc of C4 -C6, lumbar pain and TMJ.
@hazelblumberg we are glad you found us too! I see John has tagged a discussion about TMJ earlier in this thread. An easy way to find conversations taking place is to go to the very top of your screen and click on the magnifying glass, you can type a search word or terms.

Jen

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Content,Marield65 here. You are too funny. I live in good old Rhode Island. I had one of my 5 back surgeries at B & W, a Dr. Bono. Great surgeon.

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@jrchicago

How do I stop receiving – stop following – I cant handle the email load????

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You can also just delete them,but I am afraid of missing something.Marield65

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@colleenyoung, Hi Colleen. I just stumbled on to a website that has some good information about fibromyalgia. I thought there was a fibro group here on the Mayo website but i couldn’t find it. Anyway, if you think someone might find it helpful, here it is:
http://healthiculture.com/fibromyalgia/newsletter/cannabis/relatedarticles.php
I tried to copy and paste as a link but my kindle just wouldn’t do it. Sorry, Judy

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