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.

@ptawillis

Hi i am Willis Fraley Jr. 61year old male . I am a Physical Therapist and have Reflex Symphthetic Dystrophy.

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I have chronic migraine, depression and anxiety. The pain clinic doctors insist I have too much stress and medication overuse headaches. My GP believes me, but my case is too complex for him alone. I sought out a new headache specialist (my third neurologist), who believes I have chronic migraine that is exacerbated by problems in my neck and jaw (TMD.) It took a long time – 10 years out of work (still), a lifetime of migraine – to get to just one of the causes of my daily migraine attacks. My pain clinic is still skeptical, but I know I am making progress, finally. I am a strong self-advocate, and I am waiting for the pain clinic physicians to get onboard. They provide me with botox and nerve block injections. It is also the only accredited pain clinic in my state, so I have to work with them. I await the day that the doctors and therapists get together and start working together. I see that as my job, to get each provider to exchange information with the others. It is not easy, but I find I must direct my own treatment. @agmc, if your current doctors don’t believe you, seek out additional physicians until you find one who supports you. You don’t necessarily have to leave your clinic, but instead increase the size of your team. The doctors hopefully will work together to treat you the best they can. I wish you all the best.

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@ptawillis

Hi i am Willis Fraley Jr. 61year old male . I am a Physical Therapist and have Reflex Symphthetic Dystrophy.

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I seem to have very similar symptoms like yours. I have tried Botox and sterile injections, physical therapy, acupuncture,,Chiro lately. Nothing is working. I am thinking about neck disc replacement. I don’t know if anyone could provide some info or experience here. I have gone to my family doctor asking for a pharmagenic? Test because I am sensitive to medications. He said that he knew nothing about it. It is a little discouraging.

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Thank you for your post. If you can believe it the Pain Clinic at the Hospital at the University of Pennsylvania. ( the. 9 th best hospital in the US) told me to go to the Mayo Clinic!!!
Yes . It’s time to move on to another Pain Clinic.
In the meantime, I cannot work because I have constant lower extremety pain at level 9 and sometimes excruciating for many continuous days and I am trying to pursue a long term disability claim .

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Hi. So happy to find this group. I have severe scoliosis, spinal stenosis and nerve damage in my legs. I’ve tried all methods of relief. Injections. Epidural. Not a candidate for implanted spinal cord stimulator. Spine is too curved. Looking for input from others. Don’t want to do pain meds if possible. I’m 64

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@agmc Welcome, You hit an important point for all pain suffers. How do you get them to believe you have pain. In thousands of years of pain suffering there has never been an objective method of measuring an individuals pain. It has always been subjective such as the current rating scale. As long as this is the method of pain rating, it is easy for anyone to not believe you. There are rating systems used by researchers into pain and pain treatment, but the FDA has never approved an objective method of measuring pain, until this is done to many will be disbelieved. We need a push to get the medical field to accept an objective pain measuring system. As always there needs to be more research to find a system and get it approved for general use. Until this has been done too many people with real pain will be denied pain treatment and too many who have no real pain will get approved for pain medicine that they do not need.
Again welcome to the new people. 19lin

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@agmc

Thank you for your post. If you can believe it the Pain Clinic at the Hospital at the University of Pennsylvania. ( the. 9 th best hospital in the US) told me to go to the Mayo Clinic!!!
Yes . It’s time to move on to another Pain Clinic.
In the meantime, I cannot work because I have constant lower extremety pain at level 9 and sometimes excruciating for many continuous days and I am trying to pursue a long term disability claim .

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Good luck with your disability claim. I have been fighting for disability for 9 years. I am on my 3rd successful appeal. Get all the physical proof and tests you can, or the judges won’t rule in your favor. Use an attorney; they collect a fee only if you win. It is hard to slog through. Good luck at Mayo. I was referred to the Diamond Headache Clinic in Chicago, but I found that they offered only 1 procedure I wasn’t already getting, are anti-pain meds, and out-of-network for my insurance. Research what Mayo offers you before you seek treatment there, and see if your insurance covers Mayo. It is extremely expensive to go out-of-network, and travel costs and accomodations for you and a companion are not covered. They may, however, be tax deductible depending on your circumstances.

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@ptawillis

Hi i am Willis Fraley Jr. 61year old male . I am a Physical Therapist and have Reflex Symphthetic Dystrophy.

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Google Assurex. They offer pharmagenetic testing on a sliding scale based on income. If you are on Medicare, it is free. For all others, it is $75- $330, depending on income. My insurance wouldn’t cover the $5500 test, so I paid on the sliding scale. It is a simple cheek swab. You do need to bring results to a doctor to interpret them for you, although they are easy to read. Give their toll-free number a call. I found it very helpful in selecting and changing meds.

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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I have idiopathic peripheral neuropathy, which, as you may know, means that there’s no known cause. I’m not diabetic, either. I’ve tried every medication available for peripheral neuropathy, and none has helped. I’m now taking Cymbalta at 90mg daily, and Morphine sulfate contin, at 15mg twice a day, which only means that I have occasional days with a lower level of pain. Today, my pain level ranged from a low of 4 to a high of 8. The pain, burning and numbness is in my feet, with some sensitivity in my hands. I also take Oxycodone as needed for when it’s really bad. I wear gloves when I drive. Lidocaine HCI cream numbs the painful areas of my feet at bedtime so I can get to sleep. I’m seeing the pain specialist again next week, and I hope he has something to suggest.

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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Good luck to
You. I wish you
The very best. I just hope I can get some relief . I just have perosets from my primary care because there are some many hurdles to overcome on Penn ‘s Pain Clinic . I am not going back it’s just too upsetting . They don’t believe my symptoms !!!!

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@johnnyzee3

Hello, my name is Johnny Zee3, and I have Peripheral Neuropathy, brought on by an extra Protein in the Bloodstream. My pain is very similar what Diabetics suffer, but I am not diabetic.
This protien was tracked for years, because if the count increased, it can lead to Multiple Myeloma. I have been blessed, because the count has remained stable. I am taking Gabapentin, Oxicodone, and Bayer Back and body, and I wear FentynalPatch. My pain is stable at this time.

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I am so sorry for your pain, @jimhd. I ordered hemp cream from CW Botanicals, but I decided not to take it becsuse it may contain 0.03%THC. I don’t want to risk violating my pain contract. I gave the cream to my MIL, who has diabetic neuropathy in her feet, and arthritis in her hands. She has found immense relief from both conditions. You may want to try this cream, to see if it helps; it is legal in all states. Your disability sounds life-consuming. I hope you find relief somewhere, soon.

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@edieguinn

Hi. So happy to find this group. I have severe scoliosis, spinal stenosis and nerve damage in my legs. I’ve tried all methods of relief. Injections. Epidural. Not a candidate for implanted spinal cord stimulator. Spine is too curved. Looking for input from others. Don’t want to do pain meds if possible. I’m 64

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Edieguinn, we are happy that you found this group as well. Thank you for sharing a bit about your issues with scoliosis.

You might be interested in the discussion going on in the Chronic Pain group called “Scoliosis and Chronic back pain” https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/. Here you will meet members like @detzler, @sauwoon8, @mieke, and @safetyshield who have experienced symptoms similar to yours.

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@edieguinn

Hi. So happy to find this group. I have severe scoliosis, spinal stenosis and nerve damage in my legs. I’ve tried all methods of relief. Injections. Epidural. Not a candidate for implanted spinal cord stimulator. Spine is too curved. Looking for input from others. Don’t want to do pain meds if possible. I’m 64

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Many thanks!

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Hi im suebreen 54 but now im actually 56. I have degenerative disc disease involving my cervical discs and lumbar. Im disabled, but i worked from15 to 45 and im taking political science and world religions, through open source in MIT and Harvard. If anyone wants to know about that let me know I would be glad to tell you. Im involved in animal and environmental groups on FB and internet because of my disability. I live in the Adirondack Park on the St Regis River. I hace 4 grandchildren who dont live far. I like to use my experiences to help others. I have always helped pthers i was brought up that way. Glad to reintroduce my self.

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Hello. Old Karl here. Lots of issues. Probably AL amyloidosis, systemic, hereditary. Constant headache pain for 5 months, psoriatic arthritis, rheumatoid arthritis, polyneuropathy, feet, legs, bladder, kidneys failure, liver, pancreas, spleen, lungs, heart w/ arrhythmia, thyroid cancer, lymphoma, eye blepharitis and macular, spinal stenosis, ankylosing spondilitis. Macular (bleeding) skin with petechiae. Constant pain. Excess Serum Free Light Chain.

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@suebreen54

Hi im suebreen 54 but now im actually 56. I have degenerative disc disease involving my cervical discs and lumbar. Im disabled, but i worked from15 to 45 and im taking political science and world religions, through open source in MIT and Harvard. If anyone wants to know about that let me know I would be glad to tell you. Im involved in animal and environmental groups on FB and internet because of my disability. I live in the Adirondack Park on the St Regis River. I hace 4 grandchildren who dont live far. I like to use my experiences to help others. I have always helped pthers i was brought up that way. Glad to reintroduce my self.

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Hello suebreen54 it is nice to meet you and share our experiences together

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