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.

@kelseydm

@19lin Did they give you any explanation as to why the MRI would have caused the burning sensation up your spine? @leh09 @seanbeck @suebreen54 @ladyjane85 @briansr @salena54 @sharonmay7 have any of you had this experience with an MRI?

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@19lin I have had many MRI’s with no pain, You do not have wiring from a
neuro stimulator in you, do you? ladyjane85

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@kelseydm

@19lin Did they give you any explanation as to why the MRI would have caused the burning sensation up your spine? @leh09 @seanbeck @suebreen54 @ladyjane85 @briansr @salena54 @sharonmay7 have any of you had this experience with an MRI?

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ladyjane85: No, I do have a lot of shrapnel in my stump and a little in some other parts but no electrical items, and I do not believe there is shrapnel in my spine or back as far as I know? My stump or other areas don’t seem to bother me when I get an MRIs although I don’t know why since the MRI is a big magnet? I drove a light weight type of tank called an armored personnel carrier, which was mostly made of aluminum, but the landmine would have been made of mental designed to fragment into many small sharp projectiles. I really can’t think why it only gets really hot along my spine? I have not had any more in the last few years so I guess it will have to wait until next time or hope there is no need for any more. 19lin

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@kelseydm

@19lin Did they give you any explanation as to why the MRI would have caused the burning sensation up your spine? @leh09 @seanbeck @suebreen54 @ladyjane85 @briansr @salena54 @sharonmay7 have any of you had this experience with an MRI?

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@19lin Well, Lin you have had a lot to deal with, more than I imagined
when i responded. Your drs certainly should
be able to figure out if any of that material could cause the burning. You
are an honor to our military, and I salute you.
Just hate to hear all of what you all go through. My very best that your
pains become less. ladyjane85

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Hello! I am 52 and have been diagnosed with Degenerative Disc Disease,Spinal Stenosis, and Fibromyalgia. My cervical spine has been bad for 18+ years. Pain Management has treated me with epidurals, facet injections, PT and various pain meds.I cannot take any NSAIDS ie Celebrex, Ibuprophen etc, as I had gastric bypass 9 years ago and have GERD. I have given in and applied for SS disability because I am extremely limited in daily living activities let alone anything social. I’m currently not on any meds for the neck pain which is 9-10. The fibro is generally controlled by Cymbalta and moving around as much as I can. I’m lookiing forward to getting to know you!

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Hello….I live with chronic pain. I was diagnosed with CFS/Fibromyalgia in 2001 but was treated for suspected Lyme’s this year as was bitten in 2000 and had the EM rash, Bells Palsy.Since treatment my pain and fatigue has increased and I burn severely on waking. I have had lesions which have now cleared. Wondered if anyone here has Chronic Lyme’s or (suspected)and experiences severe burning as if from inside out but their skin hurts too.
I would like to share with anyone who has similar symptoms?
(Bloods results were negative)
I try to do the best I can with my limitations. I used to write music and still compose poetry and when have energy, do bespoke calligraphy.
Thank you.

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My name is Janice, I was diagnosed with Fibromyalgia in 2007. Since then I haven’t been able to work. I have been in constant pain. For the first 3 years I was able to manage with just physio, walking and vitamins. Then that wasn’t enough. I am on Tramadol 200mg SR 22x Daily, Paracetamol 500mg & Codeine 30mg 8x Daily. As soon as I try to do anything I’m in agony. My Rheumatologist hasn’t done a full physical examination for about a year as it is far too painful for me. I was on Targin 40/20 twice a day, was doing really well on until government said I couldn’t have it anymore. I have tried Methadone, Savella and Memantin. None of these have worked for me. The Fibromyalgia has left me a physical wreck.

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Seek a second opinion from a different doctor and see if both are on the same tract or different ones. Also, have you updated as much symptoms and elements that have changed since you sought treatment–so as to know if anything else was or could be involved?

irvkay312

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I’m a 69 year old female in the Atlanta area who has severe back/spine problems and am trying to avoid surgery. Standing and walking are painful and I have to sit or lie down after a few minutes. I’ve had the partial nerve blocks in the back, been to a chiropractor (suggested by the surgeon) and am trying to do exercise classes and/or water aerobics. This has helped some but now I’m having tingling down my left leg down to my toes. My balance is getting worse and the pain in my butt/rear area and leg is bothering me more. I’m interesting in others who have had spine surgery and if it has helped their pain.

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Hi, My name is Hosta. I would llke to join a group on chronic pain. I have had 2 spinal surgeries plus a surgery to repair a compression fracture. Now I have 4 more compression fractures. Dr. says there is nothing they can do now. I hurt all the time. Plus I have had a hip replacement and surgery to repair my shoulder. All on the left side. I still have pain in the hip and the shoulder. I am on Fentanyl 25 that doesn’t help that much. What more can I do? Any suggestions would be appreciated.

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@janicedean

My name is Janice, I was diagnosed with Fibromyalgia in 2007. Since then I haven’t been able to work. I have been in constant pain. For the first 3 years I was able to manage with just physio, walking and vitamins. Then that wasn’t enough. I am on Tramadol 200mg SR 22x Daily, Paracetamol 500mg & Codeine 30mg 8x Daily. As soon as I try to do anything I’m in agony. My Rheumatologist hasn’t done a full physical examination for about a year as it is far too painful for me. I was on Targin 40/20 twice a day, was doing really well on until government said I couldn’t have it anymore. I have tried Methadone, Savella and Memantin. None of these have worked for me. The Fibromyalgia has left me a physical wreck.

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I empathise with you. I would say I am also a physical wreck too after nearly 16 years. I take oxynorm for the pain, it just takes the edge off it. Coping with this level of disability after being very active with a demanding job is very hard to endure.
Take good care of yourself. Sharing is good. I only joined today too.

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My name is Hemraj Jethanandani born in India and now a US Citizen. I am 87 yrs old , married, living with my Wife and Son in San Jose.In general having good health except had back pain for 5-6 yrs which subsided with physial therapy, regular walking . Since one yr however having pain in right thigh and knee.have stopped regular walking because of pain. Pain medication did not help. Recently consulted Advanced Health Care, a division of Coyle Chiropractic Corp who suggested nonsurgical knee decompression plus deep tissue laser treatment. was not impressed. appeared to be more of sales talk. My primary Doctor advised Physical Therapy and pain medication

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Thank you for welcoming me to the group. I have had daily, chronic migraine for 10 years. I have had episodic (monthly or weekly) migraine since age 12, so 37 years of regular, severe head and facial pain. I am post-menopausal. I also suffer from TMD. Just today in the Mayo Pain Management Newsletter, there were featured articles on pain relievers and TMD. I have tried every single medication listed in the article, plus many more. I also undergo 1-2 times monthly nerve blocks of the occipital and suborbital nerves; quartetly botox; bi-weekly acupuncture and biofeedback. I use reiki, massage, essential oils. I lost 100 pounds several years ago. I exercise with a personal trainer when I can; I use essentially non-effective triptans; I take an exorbitant number of nutritional and herbal supplements, all purported to ease migraine. I no longer tolerate NSAIDS by mouth. I would like to try medicinal marijuana in MN ( No THC). Despite this exhaustive list of meds, treatments, and regimens, I still have daily migraine at a pain level of 7/8 or higher. I visit the ER almost monthly. I adhere to a strict low-tyramine, organic, antibiotic-free diet; I also have a strict, scheduled lifestyle and sleep regimen. For my TMD, I get botox in my TMJs, and have tried everything recommended by Mayo except surgery. In addition, I have had the surfaces of all my teeth shaved and digitally, perfectly aligned side to side and top to bottom. I get regular psychiatric counseling and medication for resulting anxiety and depression. As part of migraine, I have hand and facial tremors, pins and needles in my extremities, plus the typical migraine symptoms of vertigo, nausea, sensory sensitivities, etc. I have not worked in 10 years, yet I am continually denied social security disability benefits. I am only 49 years old; I barely participated in my kids’ lives as they were growing up. I live in my bed, or at the doctors’ offices. Despite my incredibly supportive husband’s significant income, I have gone into considerable debt looking to ease my symptoms; I recognize there is no cure. My doctors are weaning me off my only forms of partial but life-saving pain relief (besides ice): percocet and fioricet. After 20 years doctors are just now concerned about addiction and rebound headaches. I have had one narcotic dosage increase in all those years, and I take half the number of pain pills I took five years ago. I am a member of MENSA, highly educated, and I have researched my conditions incessantly, from proper, vetted sources. I am smart enough to know a rebound headache when I get one. I avoid them at all costs by forgoing pain relievers even when I need them. I come from a family of addicts and I am not one. I do not consume alcohol. I refuse to be a victim of addiction or anything else, including pain; I was raised to be a survivor. The doctors are replacing my life-giving narcotic medications with…nothing. Suddenly I have to fight for decadron and dilaudid (along with 3 other drugs) in my long-standing, tried-and-true, ER IV cocktail. The national heroin hysteria is compromising my health care and my health. I don’t know where to turn next. Life is not worth living if my pain cannot be remediated at least some of the time. Why can’t doctors see me as an individual, with a responsible medical history? I have had more than one doctor (and pharmacist!) mention to me his concern for his own medical license if he continues to prescribe me (or dispense, in the case of the pharmacist) two dozen 7.5/325 percocets a month. Really? Please help me comprehend how other people’s addictions to recreational drugs (used to get high) should have anything to do with my medical treatment. I am finding it hard to summon the will to survive this, with each week that my meds are reduced. Is there a treatment I haven’t tried? I have applied to many clinical trials, but am always rejected due to the frequency of my migraine, or complications with my asthma medications. I can’t believe my life has come to this.

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@hemraj

My name is Hemraj Jethanandani born in India and now a US Citizen. I am 87 yrs old , married, living with my Wife and Son in San Jose.In general having good health except had back pain for 5-6 yrs which subsided with physial therapy, regular walking . Since one yr however having pain in right thigh and knee.have stopped regular walking because of pain. Pain medication did not help. Recently consulted Advanced Health Care, a division of Coyle Chiropractic Corp who suggested nonsurgical knee decompression plus deep tissue laser treatment. was not impressed. appeared to be more of sales talk. My primary Doctor advised Physical Therapy and pain medication

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So sorry you are having pain. My doctors have suggested walking in a pool. Maybe that might help?

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Hello @lauriedr
I can feel your frustration through your note. I have a little experience in life long issues. I also have seen many of patients with similar frustrations however I am no expert. I have found over the past couple years that sometimes it is in the best interested of the patient to simply wean them off everything and start over again. I know that is very difficult to hear but I wonder if this is what your doctors are thinking. Our bodies become so use to the drugs and treatments that they no longer effective. (Just like a patient losing weight, they hit a plateau and they need to change it up to kick start it again.)
It might be beneficial to discuss with your physicians PGx Testing. This would help them find the best most effective medications to treat your symptoms without going through all the different trial and error periods. Here is a link to Mayo Clinics PGx profiling. http://mayoresearch.mayo.edu/center-for-individualized-medicine/pgx-profile-service.asp

Please know you are in my thoughts and prayers.
Thanks
Dawn

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I’m Kay Kramer (irvkay312) mentor and relatively new to many things faced on this. Yes, I’ve gone through 4 stages of epilepsy, due to the use of forceps at the time of my birth which caused pressure on the brain. Obviously, by 13 I was having 2 or 3 migraines a week, without an aura. They started me on Chloral Hydrate, then moved to Nembutal, Seconal, Tuinal, Fiorinal, and Imitrix. In essence, study to a migraine pain I discovereding seizures and migraines I learned of the correlation between them. Thus, removing all Triggers (for seizures) and being successful and seizure free for 3 1/2 years; I thought to try the same while on my last prescription of Imitrix. As such, and being able to find courses to change to even amidst my Cancer and Hospice—I have yet to have a migraine for over 4 1/2 years now. Part I attribute to ‘taking my Blood Pressure at a migraine peak and seeing it was above 155/85. Speaking with my doctor, we decided 20 mg. would be suitable and it worked–but not on a regular basis. In other words, if I got a migraine, take BP if above xx take 20 mg.Losartan and it went away.

This pointed out to me that it could relate to body change, growth factors, body interactions from conditions and also medications directed by the doctor. So far this has been something that we sought to find the cause for for years. It makes sense too. Anxiety, fear, worry, frustration, depression, etc. have the ability to increase your blood pressure and the sensitivity of BP and the brain can easily cause a migraine–though there may be other causes and types.

irvkay312

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