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.

@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hi Pablo! I’m new here and to your well-rounded vintage, must seem an eager pup. I had to reply as I, myself, have posed this question to both my neurologist and an incredible primary care physician.
You see, my condition is Multiple Sclerosis. I was treated with a monthly infusion called Tysabri for nearly five years. It lowered my immune system to the point of non-existence. It also called for me to remain out of direct sunlight and My neurologist was of the antiquated school of thought that elevating my core body temperature by a mere 3° would cause my already feeble immune system to flare up, causing further disability.
I, was instructed, however, to move and exercise. Living in Kansas, with extreme swings in weather patters in any given day, let alone week, I posed this question . What I was told is that this distraction or “mind control” as you put it, can indeed be dangerous for it is just that…a distraction, while the body is still engaged in activity. It is the reason why people listen to music and watch television while on the treadmill. To make the time “fly” by distracting a different part of the brain. It is also why a pot of water will never boil when we watch it. It is not because the time is moving at any different rate of speed, but because we are engaged in a pleasant activity.
When our bodies become fragile, we have to take extra good care of them. We have to use sunscreen, drink lots of water, and even use an ice vest during hot humid weather.
I do hope this helps.

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Father of 3, almost done with doctorate, have joint and spine chronic pain for 20 years. Looking for answers as to why my body responded to an injury with fever, swollen lymph nodes, and whole body pain 24 hours a day. Thanks

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@goodtime376

Hi all, I’m 4 months into medical marijuana use for unremitting osteoarthritis pain not relieved by the usual anti-inflammatory meds. So far I’ve had mixed results. I believe the the health care industry needs to learn more about the formulation of this product. The measure of pain mitigation is related to the combination of THC and CNB and amount used. It comes in different forms. In N.Y.doctors have to be certified to prescribe it. The 4 hour course is available online. My best relief is achieved by using 2 1T/1C capsules at bedtime and 20T/1C tincture drops at least twice a day plus 600 mgs of ibuprofen as needed. If I have to do anything that requires extreme mental acuity, I refrain from using it. It does make me a bit foggy. The benefits are not worth the cost but it until Big Pharma comes up with something more effective, this is it. I also have PT twice a week for balance and pain.

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I think she will, goodtime, because nothing else is doing the trick. There just aren’t enough good options for chronic pain relief. Re: cost, not sure, she’s in CA.

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I would like to join the sub group for OA. I am rapidly going downhill with this. I get some relief from medical marijuana and 600mgs of Ibuprofen every 8 hrs or so. I take prilosec to counteract the discomfort from the Ibuprofen. No matter,pain or less pain I’m still very restricted in my activities and constantly fatigued. This has become a nightmare.

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@coolrufus That really does sound like a strange outcome from an injury. I hope whatever doctor you are seeing will be able to help find the cause and do something to alleviate the pain.
JK

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@goodtime376

I would like to join the sub group for OA. I am rapidly going downhill with this. I get some relief from medical marijuana and 600mgs of Ibuprofen every 8 hrs or so. I take prilosec to counteract the discomfort from the Ibuprofen. No matter,pain or less pain I’m still very restricted in my activities and constantly fatigued. This has become a nightmare.

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Hello @goodtimes376. You mentioned that you wanted to join a subgroup for osteoarthritis. Here are a few discussions centered around OA that you can join:

– Osteoarthritis – what helps? http://mayocl.in/2nVJD7P
– Osteoarthritis at 32 female, http://mayocl.in/2mPCBoe

If you are replying by email, I suggest clicking on the links above to be taken to the discussion in full. I look forward to seeing more posts from you in the osteoarthritis discussions @goodtimes376.

Liked by madagascarjoan

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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Hi to all
I’m an OA sufferer with gait and balance problems. I’ve had TKR 3 years ago and have extensive spinal OA (ie stenosis). Last October was diagnosed with bone on bone OA in both shoulders. Rheumatologist told me I needed bilateral shoulder replacement. I”m limited in activities as a result but no way am I having that surgery at my advanced age, 81 years old.I tried the steroid injections for the shoulders with no help there. After I pleaded with my PCP for help in finding a legitimate physician certified to prescribe Medical Marijuana she came thru with a referral. I live in NY where it recently was legalized. It’s quite costly and you have to experiment with the dosage to get the best results. It does make me a little sedated and I do not drive or do any work that requires my utmost concentration. The best relief is from the sublingual 20T/1C ratio. The 1T/1C capsules I use at bedtime. In my experience have to take 600mgs of ibuprofen at least every 8 hours with the MM. I seem to be losing strength and stamina each day. Daily life is challenging. Getting dressed is an adventure.
But I’m still plugging along. So if it is possible to obtain the legal medical marijuana don’t hesitate to use it. The opioid epidemic is not from persons with chronic pain and the issue of over prescribing for sufferers is not the cause. Stay strong and keep writing to this site.

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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@goodtime376

Keep standing up for yourself. You know best what’s best for you. MM is legal here, as well (so is recreational use), but, as you said, it’s expensive. I acquired enough to make 2 lbs of cannabutter, and then I made a double batch of chocolate chip/mint chip cookies with a pound of it. The mint helps cover the Marijuana flavor. I made them on the large side, and it takes just more than 2 cookies to relieve the burning pain in my feet. 3 makes me loopy. I’m a retired conservative minister, and never imagined that I’d advocate for the use of Marijuana, but pain can make us more open to the options. I’m getting a spinal cord stimulator tomorrow. Maybe I’ll be able to toss the cookies. Hmm. That doesn’t sound quite right.

Jim

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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Lidocaine or EMLA is a prescription I get infrequently to get skin numb so that I can have blood drawn or get a shot.
Spread creme where u will be injected – cover w saran wrap – wait 45 min or more or less and get shot.
Really helps – I leave a tube in my car in case someone wants to take blood.
Don’t know why medical people Don’t know about this or don’t care if u HATE needles.

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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

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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Hello @alyric. I see that you have learned to navigate Connect quite well already and have found some discussions centered around some of the things you are dealing with like peripheral neuropathy. Here are a few more discussions you may find useful as well:

– Fibromyalgia Pain, http://mayocl.in/2hgUGcv
– Osteoarthritis – what helps? http://mayocl.in/2nVJD7P
– Osteoarthritis at 32 female, http://mayocl.in/2mPCBoe

Here is also a discussion with some members who have gone through the pain rehabilitation clinic program at Mayo Clinic, http://mayocl.in/2hj0DBM.

@alyric, you certainly have dealt with quite a bit and I know the members will appreciate your openness and help in any way they can. If you don’t mind, may I ask how similar is central pain syndrome (CPS) to complex regional pain syndrome (CRPS)?

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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@mari
I use Lidocaine cream on my feet every night to numb the pain while I go to sleep. Pain is from peripheral neuropathy.

Jim

Liked by jewel8888

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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, is there a medicaid program where you live? Perhaps that could help with the medical expense. You mention insurance for RX. Do you have health insurance? Will that help with the Pain Rehab costs? I understand your feeling of helplessness and frustration. Been there,done that.While I’m not dealing with the same array of chronic pain causes as you, I know my pain will always be there till I’m gone. Aside from this online group, do you have people in your life that are supportive? That is most helpful. Hang tough and try to trust in a higher power.

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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Has anyone heard of Dr. Wallace and his 90 for life program? His claim is there are 90 minerals and nutrients we need daily and is helpful and/or a cure for many conditions, including osteoarthritis.

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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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