1. < Chronic Pain

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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

19lin | @19lin | Apr 14, 2017
In reply to @alyric "Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of..." + (show)
@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!

Jump to this post

@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

REPLY
coolrufus | @coolrufus | Apr 14, 2017

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?

REPLY
2 replies
JK | @contentandwell | Apr 14, 2017

@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

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Apr 14, 2017
In reply to @alyric "Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of..." + (show)
@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!

Jump to this post

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

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Apr 14, 2017
In reply to @alyric "Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of..." + (show)
@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!

Jump to this post

@alyric

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

Jim

REPLY
daybyday | @daybyday | Apr 14, 2017
In reply to @coolrufus "1. How are people getting CRPS diagnosed? I'm a textbook case for the pain disorder but..." + (show)
@coolrufus

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?

Jump to this post

Hi, @coolrufus - Have you been to a pain specialist/pain clinic? They should be more open to working with you on pain management, including opioids...although sadly thanks to politics, it does seem that opioids are going to be harder to get everywhere. A pain specialist can also diagnose things like CRPS, and refer you to other docs for the things they can't diagnose. I have CRPS myself, was diagnosed by my orthopedic surgeon and treated by a pain clinic, where I felt well cared for. I hope you get some help with a diagnosis & pain relief soon.

REPLY
kathyv | @kathyv | Apr 14, 2017
In reply to @alyric "Hi Everyone! I have CPS, CFS, Fibromyalgia, OA & Post Surgical Neuropathy. I think most of..." + (show)
@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!

Jump to this post

Hi a lyric. Yes, phantom limb pain is also considered to be CRPS. I was in a pain therapy program with someone who had phantom limb pain.

REPLY
blindeyepug | @blindeyepug | Apr 18, 2017
In reply to @contentandwell "@kathyec I had migraines from my teens up until I completed menopause. I stopped working when..." + (show)
@contentandwell

@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

Jump to this post

@kathyec I had horrible migraines when I was younger (I'm 56 now). After my complete hysterectomy, the migraines disappeared except when a "front" comes through - like it is going to storm. I have found taking a Sudafed (the kind you have to get from the pharmacy) and two Excedrin migraine takes my migraine down to a very manageable headache. I have no idea why it works, but my brother-in-law swears by it, too. Good luck and I hope this helps!

REPLY
JK | @contentandwell | Apr 18, 2017
In reply to @contentandwell "@kathyec I had migraines from my teens up until I completed menopause. I stopped working when..." + (show)
@contentandwell

@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

Jump to this post

@blindeyepug and @kathyec As I mentioned earlier, I too got some relief from antihistamines. I just bought a generic. It wasn't great relief but a little is better than nothing.
JK

REPLY
View MoreView Less
Please sign in or register to post a reply.