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.

@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
@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
@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
@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

@contentandwell
Thanks for your reply

REPLY
@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

Thanks, might try that!

REPLY
@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.

Jump to this post

Thanks. I had a hysterectomy quite a few years ago. I’m 67 and only started having migraines the last several years. We think it maybe due to neck issues and am having physio to see if we can correct it. They are very frequent at this point. I have tried many medications and use a preventative (every day) as well as acute meds when the headaches are really bad. The preventatives don’t work that well, so hopefully can try something different until we find one that is more effective.

REPLY

@kathyec I too was on a preventative for a while a very, very long time ago. It really did not help me. My migraines were definitely hormone related, as I think most women’s migraines are. It took me a while to realize this, but then it was so obvious suddenly that I felt really stupid to not have recognized that sooner. I think my daughter’s are also probably but she is not ready to accept that. Taking birth control pills exacerbate them.
JK

REPLY

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

REPLY
@oceangirl

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post

My dear Erika,
You have a tale to tell. My chronic osteoarthritis is nothing compared to your problems. God bless you for your courage and strength to keep fighting to beat this. You are inspiring! I shall remember you in my prayers. Good luck and stay strong.

Liked by oceangirl

REPLY
@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

I completely understand. I had to wean myself from high dosages to only a few pain pills after moving from Maryland to South Carolina. Ten yrs. later im back to pain Mgmt. I got very sick last year from an infection and was post neck fusion as well.

Keep searching, try National institutes of Health, they may have Studies in your area that will help you get back in rhe system. l was an intern there and later received care from them.

I have faith you will find yourself getting help you need, keep advocating for yourself. Nothing totally makes us feel 100% but medicine makes it tolerable, you are in my prayers.

REPLY
@oceangirl

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post

Hi Erika, welcome to Connect.
That is quite the story and I’m sure it is the super short version. We look forward to getting to know you more as you continue to take part in the community. I’d like to start by unraveling some of the short forms you used to make sure I got everything correct. CSF leak = cerebrospinal fluid leak, mTBI = mild traumatic brain injury, ICU – intensive care unit, PT = physical therapy, ICP = intracranial pressure and ICH = intracranial hypertension. (I think our resident acronym buster, @sandytoes14 would be proud of me.)

Secondly, I’d like to steer you to a few existing discussion groups where you can meet others talking fibromyalgia and brain issues:
– Fibromyalgia Pain http://mayocl.in/2hgUGcv
– Brain Tumor group http://mayocl.in/2i2TRoa

When do you start the 3-week fibromyalgia clinic at Mayo, Jacksonville?

REPLY
@oceangirl

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post

@goodtime376, Do you know about the discussions taking place in the Bones, Joints & Muscles group about OA? You might wish to join them here:
– Osteoarthritis – what helps? http://mayocl.in/2nVJD7P
– Osteoarthritis at 32 female, http://mayocl.in/2mPCBoe

Liked by annmerc, oceangirl

REPLY

thanks for the welcome. i look forward to learning and helping here. i will definitely check out the links too, thanks.
Erika

REPLY
@oceangirl

Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika

Jump to this post

thank you for your kind words and prayers.❤️

REPLY
Please login or register to post a reply.