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.

@kathyec I had migraines from my teens up until I completed menopause. I stopped working when my son was born and would have liked to return but I just figured I wouldn’t last long at any job because of my headaches. I got them either once or twice a month, each time lasting 3 to 4 days. They coincided with ovulation and menstruation. Nothing seemed to help. Imitrix came out but I read you should not take it if you had heart issues. I have not but since everyone in my family dies from heart problems I figured it would not be a good thing for me. My daughter has unfortunately inherited my migraines though and she does take it and most of the time it works for her.
I did find the headaches were worse with certain triggers and that even in parts of the month when I would not generally get them if I ate certain things I did. For me two of the triggers were definitely chocolate and raw onions. There were others but I forget exactly what now. I did find I could eat white chocolate.
Sometimes I would get a little relief from an antihistamine but “excedrin migraine” never helped.
I hope you find something. I think I was one of the few women who was thrilled to go through menopause. I am glad my daughter can get some relief but it is not 100% generally, and sometimes she has to take it two times. When she has a headache sometimes she calls and I think talking to someone who can be soothing helps a tiny bit. I used to find that too with a woman I knew. She was always very calm, and sort of a slow talker and when she happened to call it temporarily helped. I had another friend who knew the minute I said “hello” when she called, that I had a migraine. No one else could hear that.
If you find anything that gives you relief please let me know, I will pass that on to my daughter.
JK

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@kathyec, I too had headaches for most of my adult life. I didn’t want to call them migraines because my mom had migraines. When I was a child I saw how badly she suffered with them, losing job after job when she couldn’t go to work and was throwing up in her darkened bedroom for a week at a time. I thought, and was tol by my grandmother that she was just weak, and that’s why she was in bed. I took tons of ibuprofen trying to get rid of my headaches in my 30s, and caused ulcers. Finally in my early 40s I had to get help for the migraines. Yes, my doctor diagnosed migraines, and prescribed Butabital for them. I took the pills and they made me sleep, but they didn’t help the headaches very much. I was off work for 4 days at a time. A coworker told me about some shots she was taking for her migraines that really worked, so I asked my doctor about them. Instead of shots he prescribed Imitrex. The first time I took the Imitrex I thought I was going to die! I felt horrible, and couldn’t function. The second time I took it, I went to bed and slept solid for 4 hours. Then I awoke and my headache was gone! I continued to have migraines and take Imitrex through the years. Then at 50, I had to have a hysterectomy. I was 6 months out before I suddenly realized that I hadn’t had a headache of any kind since the surgery. I still haven’t had a migraine and I’m 68 years old. I am sure that migraines are related to hormone levels in women and perhaps in men as well. I highly recommend Imitrex or a similar medication. I hope this is helpful.

By the way, I don’t recommend having a hysterectomy unless it is medically necessary. My whole sex life changed after that and it was a difficult transition for my husband. We had a wonderful intimate connection before the surgery, but I found it impossible to participate in afterward. We nearly split up during that time. I was allergic to all the OTC preparations to help the moisture issues and it took us some time to work out new and different ways to have intimacy. My emotions have changed as well, and I had to mourn the loss of the soft emotional part of me. I had no choice about needing my surgery, but for any woman considering an elective hysterectomy, I recommend against it.

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@gailb

@kathyec, I too had headaches for most of my adult life. I didn’t want to call them migraines because my mom had migraines. When I was a child I saw how badly she suffered with them, losing job after job when she couldn’t go to work and was throwing up in her darkened bedroom for a week at a time. I thought, and was tol by my grandmother that she was just weak, and that’s why she was in bed. I took tons of ibuprofen trying to get rid of my headaches in my 30s, and caused ulcers. Finally in my early 40s I had to get help for the migraines. Yes, my doctor diagnosed migraines, and prescribed Butabital for them. I took the pills and they made me sleep, but they didn’t help the headaches very much. I was off work for 4 days at a time. A coworker told me about some shots she was taking for her migraines that really worked, so I asked my doctor about them. Instead of shots he prescribed Imitrex. The first time I took the Imitrex I thought I was going to die! I felt horrible, and couldn’t function. The second time I took it, I went to bed and slept solid for 4 hours. Then I awoke and my headache was gone! I continued to have migraines and take Imitrex through the years. Then at 50, I had to have a hysterectomy. I was 6 months out before I suddenly realized that I hadn’t had a headache of any kind since the surgery. I still haven’t had a migraine and I’m 68 years old. I am sure that migraines are related to hormone levels in women and perhaps in men as well. I highly recommend Imitrex or a similar medication. I hope this is helpful.

By the way, I don’t recommend having a hysterectomy unless it is medically necessary. My whole sex life changed after that and it was a difficult transition for my husband. We had a wonderful intimate connection before the surgery, but I found it impossible to participate in afterward. We nearly split up during that time. I was allergic to all the OTC preparations to help the moisture issues and it took us some time to work out new and different ways to have intimacy. My emotions have changed as well, and I had to mourn the loss of the soft emotional part of me. I had no choice about needing my surgery, but for any woman considering an elective hysterectomy, I recommend against it.

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@kathyec Kathy, initially when Imitrex came out it was only in shot form, so perhaps that is what your friend had. They were about $100 per self-administered shot and often not covered by insurance.
I had a doctor put me on phenobarbital, 5 before bed. It didn’t help my migraines and made me feel like a slug the next day so I weaned myself from them. Prior to that I was put on an ergot type of drug. That helped a little but in other ways it made me so sick that it was as bad as havng the darned migraine.
JK

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@contentandwell, I think your last post referred to Kathy, but I think you may have been responding to my post. Thanks, Gail B

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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@JustinMcClanahan I have found several discussions to participate in. I find everyone’s experiences interesting and informative. It’s nice to know I’m not as “abnormal” as I’ve decided I am. HaHaHa!

I wanted to make sure I was using the correct terminology so I researched quickly some of the most reliable sites. This is one of the definitions. “CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain” per http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/ . I have found post-surgical pain, fibromyalgia and even everyday bumps are so much more painful than before I had significant pain.

CRPS at CPS is the same disorder. Doctors without much experience dealing with patients having pain issues accuse the patient of “making it all up, “it’s all in your head” and “you are just saying this to get medication”!

Some of the latest research shows Low Dose Naltrexone is effective in helping with CRPS/CPS as well as Fibromyalgia. (http://rsds.org/wp-content/uploads/2015/02/Younger_LowDoseNaltrexone.pdf) Naltrexon has, until recently, only used in alcohol withdrawl (in a much higher dose, of course). I have found by using the Naltrexone 4.5 mg and Cymbalta, 90 mg in divided doses, has helped with this pain, but not alleviated it.

I found this information rather interesting.

“Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to
low-dose naltrexone.” (http://rsds.org/wp-content/uploads/2015/02/Younger_LowDoseNaltrexone.pdf)

So if a prescriber were to do this simple test, it could predict if it would be effective in helping treat chronic pain. One of the other things I found, Naltrexone is a compound medication and not every pharmacy does the compounding, but the Mayo Clinic Pharmacy does. But when initially filling, it will take several days to fill the first order, after that just a day heads up & they will have it done.

My PCP has now (not exactly now-January 4, 2017) prescribed a topical cream consisting of Lidocaine and diclafenac. Since insurances will only allow lidocaine 5% or higher for shingles, they will not pay for it (Mayo pharmacies charge $189/30 oz (600 ml)), but will pay for the diclufenac, I have to buy the OTC 4% lidocaine cream available, the pharmacy will send the powder diclafenac and I have to mix it together. I hope to see results of some sort from this. Since it is a topical cream and not a patch, it will need to be applied TID (3 times daily). I will check back after a trial of this. My PCP is out of other ideas if this does not work. He has said if I wanted medical marijuana, he would help me with the process. I hope not to go that road since it is expensive, even with grants available in MN, and not knowing right now how it would affect my nursing license.

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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@goodtime 376. My insurance in Medicare and MN Medicaid, and the only expense Medicaid will help cover is lodging up to $50/night and a $$ amount for meals—this is great, but I have to pay out of pocket for it, then submit receipts for it, then wait up to a month for reimbursement. The other reason it would be difficult to attend the Pain Rehab Clinic is my son. He is 21 and just diagnosed with Autism. Yes, 18-20 years to late. He is what is formerly known as having Aspberger’s Syndrome. He has the body of a 21 year old, the intellectual age of someone who has a Ph.D., the social age of a 10-15 year old and emotional age of someone ages 2-10. When I was in the hospital from April 29-June 7, 2016 he didn’t do well. He took care of our 2 small dogs, managed to eat but that was it. He didn’t do laundry, take out trash or recycling, vacuum, or do dishes unless he needed something. He used all the disposable plates/plastic ware/napkins. He did not tell anyone where I was, what had happened and did not communicate with others except when he went to the library. So, I am concerned, even though I would be gone from early Monday morning to early Friday evening and in contact by phone. I’m trying to get a support system set up for him to use in the case I wouldn’t be around due to hospitalization or some other unexpected emergency. His father hasn’t been in his life since he was arrested in 2003, and wasn’t a present parent before that. My daughter is 23 and not involved in our lives so she isn’t someone to count on.

I do not have much of a support system. People tend to shy away from people with medical issues. I have a therapist I meet weekly with, and I just started a job at the local Family Dollar store. I do have a church I attend infrequently since finances are so tight I am unable to afford the gas to travel 70 miles round trip, and no one to carpool with. It is only my faith that has sustained and brought me through this turbulence. Thanks for asking and sharing a bit about your pain! Blessings!

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@kathyec

Hello,
My name is Kathy Coldwell and I live in NS, Canada. I have been living with severe migraine headaches for about 7 years now. Although some treatments have brought relief, so far none have reduced the frequency to a low number. I still have many headaches. always hoping for new breakthroughs.
Looking forward to hearing your stories and perhaps some pointers re things I’ve not yet tried.

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Hi @kathyec, I would like to add my welcome to @contentandwell and @gailb‘s. Thank you for sharing a bit about yourself with the group and thank you content and gail for offering your insight on migraines.

I think there are a few conversations you all might find helpful to give a look and join in on. You can find them here:

– Anyone with constant migraines, unrelieved by any treatment? http://mayocl.in/2mSydSv
– Migraines http://mayocl.in/2d3qTUi

@kathyec, I look forward to seeing more posts from you on Connect!

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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@alyric

So sorry life is so complicated for you right now. Lidocaine 5% cream has been a help to me. I put it on at bedtime, and it numbs my feet enough to get to sleep. I have peripheral neuropathy. Medicare has paid for it for my application.

We drive 30 minutes each way to church, so I know the problems with that. It’s expensive, and hard to make close relationships. I’m a retired minister, and I’ve always hoped that congregants would care for each other, and they often do amazing things for one another, whether they know them or not. Your pastor could probably introduce you to those who have a gift of benevolence, and maybe they’ll surprise you.

Pizza just arrived. Gotta go.

Jim

Liked by alyric

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@gailb I guess you were both on the migraine thread so it was really to both of you. Am I ever glad that those headaches are gone. When my children were little I kept a special cache of toys for them to play with when I had a migraine, that way since they most often only saw them once a month they were “new” and more interesting than what they saw everyday. I will always remember how dear my son was. He is two years older than my daughter and as I lay on the sofa with my migraine he would do anything to keep the peace with her. Normally he basically tortured her! They are 34 and 36 now and he still does torture her but in a teasing way. He is really very good to her, even flying her out to CA to visit him.
JK

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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Yummy, Jim! Pizza sounds SOOO good!

How did you get Medicare to pay for the Lidocaine? My PCP has submitted a couple of different diagnosis & habe been rejected. Plurodynia & Post thoracic surgical traumatic neuroparhy.

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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@alyric Thank you for providing the information on CRPS and related sites. My original chronic pain was phantom limb pain, which is still one of my major problems. I had never heard of CRPS and thanks to your post i was able to look it up. I still am not sure if they consider phantom limb pain part of CRPS, but it has led to other sites about phantom pain. I appreciate your email and including the sites to contact. Good Luck, 19lin

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1. How are people getting CRPS diagnosed? I’m a textbook case for the pain disorder but any doctor I’ve ever seen won’t ever touch CRPS, fibromyalgia, chronic fatigue, etc. that’s not special for me but rather that seems to be a set of illnesses that doctors in Washington state won’t come near.
2. Outside of the above I have a litany of issues that clearly warrant proper opiate treatment (I’ve shown in the past that doses of around 80mg MME a day triple quality of life) but can’t find a doctor in Washington state to even discuss anything other than Tylenol 4. Again, this isn’t exclusive to me. What are people to do outside of using the darkweb or flying to Miami?

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@coolrufus good luck in your quest for relief. It’s so frustrating when a doctor brushes you off. I hope that doctor is not of the mindset that fibromyalgia is all the person’s head, I know people who are generally well versed medically who believe that.
My doctor also is always reluctant to prescribe things so when I had really horrible pain a day after ablation (my ablation was not typical so if anyone out there has to have one don’t worry, it will more than likely be fine) he prescribed oxycontin! The ER had prescribed oxycodone which is not as strong but it didn’t give me much help. Thankfully the pain was gone in about 2 days though so I only needed to take one.
The pain had been so bad the morning after that I had trouble pouring myself a bowl of cereal.
JK

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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The neurologist prescribed it for idiopathic peripheral neuropathy chronic pain. It’s expensive. Have you tried Capzaisin? I’ve heard that it helps some people, though it didn’t touch my pain.

Jim

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@alyric

Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of my pain started at age 11 or 12. I was dx with the Fibro in my mid 30s. Almost a year ago I had tracheal repair surgery in Rochester Mayo via a right sided thoracotomy, I was on a ventilator for 2+ weeks with dual ventilation, ECMO for 2 weeks & tracheostomy for 4+ weeks. I’ve had 5+ knee surgeries, 2 c-sections, gastric bypass, 4+ pelvic laprascopic procedures and my gall bladder laprascopically removed. I have constant pain ranging from a 5-9 on the 0/10 painscale. I’m still trying to find pain management help as my PCP isn’t able to help much. The pain doctors won’t see me after reading my chart as they said there is nothing they can do for me. I am taking duloxetine 90 mg Q/D, naltrexone 4.5 mg Q/D. I have tried all the OTC topical gels, creams, patches with no success. My doctor is trying to get a lidocaine/diclofenac gel/cream compounded. The pharmacy is having trouble following directions and the dx has been changed several times to try to get insurance to pay for it. I have been offered the 1 day and 3 week option of the Pain Rehab Clinic, but the 3 week clinic is not affordable for me in regards of motel/meals. etc. So I need feedback and ideas to deal with this pain. My PCP has given me the option of medical marijuana but that is also not within my budget. TIA!

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@alyric

The pizza was excellent – first time to try a small place.

Jim

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