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Chronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: 4 hours ago | Replies (7051)Comment receiving replies
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.
Replies to "I developed earaches in September 2016. My primary care found no ear or sinus infection and..."
Talking of which, I have just started taking Humira for PsA. And then I was put on Boniva for newly diagnosed osteoporosis. And I was ill for four days. I've talked to my GP about this and we've agreed that when this wears off in 3 weeks I will try Fosamax. Hopefully the Humira will start to kick in.
@kdubois @hazelblumberg While I had cirrhosis my reactions to many medications was quite troublesome. Prior to knowing that I had cirrhosis I was diagnosed with Barrett's Esophagus and prescribed PPIs. They really bothered me. We went through four different ones and ended up going back to the first because that was the least troublesome. Now things seem fine.
JK
blindeyeplug, I am Marield65, welcome to the club. I could have written your letter myself. I was on exact same meds. Wellbutrin made me paranoid, no success with Lexapro,Prozac was like I was reborn, it was the miracle drug until it stopped working and now I am on Cymbalta which keeps me going but not like Prozac. I am so scared to think that someday cymbalta will not work and I don't think I can go through another depression, however, I am a pro now at dealing with this awful disease that I should be able to handle it. But it is scary. I think the Doctors all read t the same books. Take care of your self and keep me posted if another miracle medication comes up. Nice to meet you and can I ask you your age? I will be 72 next week and I hope I wake up on my birthday cured.
Hello Marie, @marield65
I do admire your persistence and positive attitude in dealing with your disorder. It sounds like you are a "young 72 year old." Happy birthday a few days early!
What plans do you have for your birthday? (I always give myself a gift for birthdays, Christmas, etc. - my form of self-love).
Teresa
I am 57. I also worry about my depression becoming drug resistant! Happy Birthday early! Waking up cured would be the ultimate gift!!
hopefull, bindeyepug, contentandwell, and John: Thank you for the birthday wishes. My husband and I just bought myself a bullet vita blender because I love shakes, and I've lost around 16 lbs and hope to lose about 5-10 more. And with certain shakes this will help me. But he also takes me and my daughter (who has the same birthday as me) out to dinner along with my son, and his wife. I will have a nice birthday, and my wish as I said is to be well, but after today, I don't think that will be the case.
I felt good when I got up, but after doing shopping yesterday, and a little today, I was dead on my feet this afternoon. Everything hurt. My left knee replacement this past April was so sore, as my back, which I had the fusion, and several pinched nerves. one of which I am going back for shots, and a disc that is bad and the neurosurgeon would like to do another fusion but is holding off, I felt like my joints were burning up and my back was in pain. I put ice on it and took 1 1/2 pain pills, and just felt like crying. It is like 2 steps forward and I'm so happy, and then 3 back. Once the pain pill worked, I felt like my old self again, although a little heady. Again, I was being negative telling myself why me. I use to be so active, now all that has been taken away. I'm happy doing the little things I can do , but when I get whacked like I did today, I start feeling sorry for myself, and I hate doing that.
Plus this week isn't suppose to be a good week, and I look forward to meeting my friends at my gyms pool, and it doesn't look like that will be this week. Maybe one day this week is suppose to be ok. But this is my outlet, going to the pool. How much is going to be taken away from me. I am grateful that I'm still able to do even the little things, but it seems that I pay for it in the end.
I hate being a downer, but that's how I felt today.
Tomorrow I will start fresh with a good day. I promise.
Love to all. Marie
@marield65 Marie, I'm glad you had a nice birthday dinner, but sorry that afterwards you were hit with so many aches, pains, etc. I hope tomorrow will be a better day for you.
Is your pool an outdoor pool? Thankfully the one I go to is indoors. They do have an outdoor one also but you have to pay extra to be a "premier member" which is not worth it to me. I hope you manage to go to your pool this week, it is so helpful, especially if you have a good group people in the classes also.
JK
@hazelblumberg, you have a few options for getting the testing done. I'm not positive that all Mayo locations do the testing, but you can check. Often times, PGx tests performed in the clinical setting are more expensive, and sometimes insurance doesn't cover the costs. (My first sets of tests done onsite at Mayo Rochester cost ~$2,900 for 9 tests and insurance refused to cover them.) With that said... my second set of tests (22 tests for $249) done via mail order by OneOme.com. OneOme is a Mayo Clinic company located in Minneapolis. Your doctor just needs to go to the site, do some reading, and get their contact info. S/he contacts them, and then they call you to confirm your mailing info and to get a credit card payment. They then ship the test kit to you, you swab your gums, and you send it back to them via the FedEx shipping container that that provided to you. After they process your sample, they contact your doctor and you can also download a copy of your report from their web site. The only thing missing if you do it this way is a little bit of counseling where someone explains how your system processes meds, what the tests find, etc.
To prep your doctors to learn more, ask them to google "cytochrome P450". (All doctors learn about this in college, but not in enough detail to use in practice. Based my experience, internal medicine PCPs and cardiologists seem to be more familiar. Pharmacists, especially younger ones, seem to know the most.) The cytochrome P450 liver enzyme system is how our bodies metabolize most drugs, many of the toxins that enter our bodies, and some of our hormones (especially steroids). This is the liver enzyme system where many polymorphisms are found.
(Basically, we all have this system in us, and it is packed full of enzymes. Each enzyme is like a gene that has two alleles... one from your mom and one from your dad. Sometimes, these alleles have genetic mutations, also known as polymorphisms. These polymorphisms prevent us from metabolizing some medications as intended.
Some good info to read / videos to watch:
• http://individualizedmedicineblog.mayoclinic.org/2016/12/06/pharmacogenomics-the-rx-for-success/
• http://mayoresearch.mayo.edu/center-for-individualized-medicine/pharmacogenomics.asp
The reports I received from Mayo and OneOme are essentially the same. The cover page lists medications that I need to avoid and also use with caution. The next page lists medications that should be okay for me to take. The subsequent pages explain each polymorphism or if I tested okay for the gene.
For the total of 23 genes I've had tested, I have 13 polymorphisms, but most people probably just a few. I am probably very rare, but having these polymorphisms is not a rarity, so this is very valuable information to have as an individual that can also help your family. With the knowledge was gained from my tests, we now know that my daughters absolutely need to be tested eventually. I was ill for 12 years due to prescription meds that I don't properly metabolize, drugs like Nexium, Cymbalta, Metoprolol, cold medicines that contain DM, and more, but because of what we know now, we can prevent this from happening to my daughters.
My Mayo pharmacist said he wishes everyone would be able to get this testing done, and I agree. There are some hospitals in the Virginia area that now offer this as newborn testing.
@marield65, please see my post to @hazelblumberg as well regarding pharmacogenomic testing.
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Kelly, what you've said is really interesting to me. Yes, my docs know that they have to start me on really really low doses of any medication and then maybe work their way up. If I can't get any help here in Tallahassee, I'm considering going to the Mayo Clinic in Jacksonville, FL. It's about a 3-hour drive away, but it'd be worth it.