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Kelsey Mohring
@kelseydm

Posts: 299
Joined: Feb 24, 2015

Chronic Pain members - Welcome, please introduce yourself

Posted by @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.

REPLY

Hello and welcome to all of our new members, @sunshineme, @janicedean, @granny988, @hosta, @hemraj, and @lauriedr! We’re thrilled to have you all as part of the Chronic Pain group. And appreciate you sharing a little bit about yourself in this thread. I’d also like to introduce you all to existing members of the Chronic Pain group, @leh09, @19lin, @suebreen54, @ladyjane85, @briansr, @salena54, @sharonmay7, and @lolomarie.

Liked by kayelle

I’m Angela and I’ve just joined in. Had a car accident last Nov. has a fracture of L1 which the Drs let heal. That seems to have happened but I am let with conic pain in my middle back. Nothing short of Norco seems to help. I hate taking this every day. LOoking for other ways to manage

@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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I had to have the stimulator taken out before they would do another MRI. The Pain Stimulator didn’t do any good anyway. I hadn’t used it for 2 years. Still hard to lay on the table for that long. I too asked to stop but they told me to hang in for a little longer.

@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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Thank you for your comment. Every one tells me how good I look. (It is wonderful what makeup can do) They just don’t know how I hurt.

Liked by momij

@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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I have had PT, Injections, and a Pain Stimulator, nothing has helped.

I too am looking of ways to manage the pain. I hate taking this kind of medication especially when it doesn’t to that much good.!

@dawn_giacabazi

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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Hi Dawn. Coincidentally, I just had a similar genetic test offered by
Assurex. My psychiatrist provided it to me. Medicare covers 100% of the
$5500 test, but my insurance wouldn’t cover it. Luckily, they provide a
sliding scale cost structure. The maximum out-of-pocket expense for
patients is only $330.00. The test covered my liver’s ability to metabolize
ADHD meds (not applicable to me), Opiods, antidepressants, antianxiety
meds, anti-seizure type drugs, and one other category I can’t recall. Here
is what I learned: I am on the proper opiods and metabolize normally
(“green light meds.”) I am on Cymbalta, a “yellow light” med, which for me
means that I may need a higher dose than 120 mg. The other antidepressants
in the “green light” category for me all cause weight gain. I lost 100
pounds 2.5 years ago, and I am now at normal weight. Recently, after two
months on Depakote (not an antidepressant but a seizure-type drug) I gained
20 pounds. I stopped the med. I will not gain more weight again, so I am
not interested in changing antidepressants for a “better” choice. Regarding
anxiety-type meds, I am on exactly what I should be on: klonapin. Now I
know why ativan and others were not effective. For the anti-seizure type
drugs like neurontin, all were in the “yellow light” category, with each
med having abnormal, unique metabolic results. I lost 2 years of my life to
neurontin; now I know why. Topamax, which I took 400 mg per day for 15
years, was not noted on the test. In any case, it was not very effective
and I lost IQ points, permanently, I fear. I have been off that drug for 2
years and I still can no longer remember names, faces. I have trouble
finding my words still. For a brainiac like me, this is devastating. To
wit, I cannot recall the final category of meds, but folic acid is in the
“red” category. Enzyme #6 in my liver does not function at all, and my body
cannot convert folic acid to folate. Low folate levels are linked to heart
disease and Alzheimers, both of which run strongly in my family. I
researched forms of folate available to consumers, and chose the one that
does not need to be metabolized by the body. It is expensive, as I avoid
unnecessary additives as well, but I now take that pill every day. To
summarize, besides a needed boost in Cymbalta, I am on good medications for
my body. Does the test you mentioned cover additional drugs or drug
categories?

Dawn, I am aware of the cold turkey theory. In fact, I tried to get an
appointment at the Mayo Headache Clinic in Rochester, 2 hours from my home,
but they wouldn’t even schedule an appointment with me until I am 2 months
free of all drugs. It is a great theory, but torture to live through. As it
is I barely make it through a day without excruciating pain. I am allowed 2
days of fioricet, 2 days of percocet, 2 days of rizatriptan. I am not given
enough of any of the three meds to follow that schedule, so I have many
days on no pain meds. I must point out that I am triptan resistant, and
take the pills as a placebo only, hoping my positive nature plus the pill
will give me relief. It rarely does. I receive moderate relief from the
incessant pounding with the percocet (vicodin is ineffective for me, as the
genetic test noted.) I get even less relief from fioricet, which I have
been on and off over the years. I supplement the Rxs with benadryl, which I
get via IV in the ER, so I figure there must be something to it, zofran,
and cyclobenzaprine. I forgo klonapin when I take percocet. I know the drug
interactions and safety comes first because I have 2 kids in their early
20s. I cannot take NSAIDS at all by mouth due to Roux-en-y, but I do
require IV Toradol in the ER. It is part of my cocktail. I avoid Tylenol
because it is in the percocet and fioricet, and it causes me rebound
headache if I take acetaminophen more than twice a day. I will be in the
mental ward of a hospital if I go off of klonapin or Cymbalta. I tried to
reduce Cymbalta to 90 mg/day, and I just about had a nervous breakdown
within days. Physically, I cannot tolerate any more pain. I spent $700 on
the ThermaZone machine, which circulates ice cold water around my head
nearly 24×7. It replaces the IceKap and other “ice hats” that melt quickly
and don’t last long enough. Ice helps numb the pain; it dulls it
significantly. I am true to my word that I will need long-term
hospitalization if I have to suffer worse than I do now, for any length of
time. I have gone above and beyond by utilizing alternative and
non-medicinal therapies, to great personal expense. Until you have walked
in my shoes, not other migraineurs’ shoes, but my own, you cannot possibly
imagine the low quality of life I have. Mine is a life unlived. I question
why I was even born, to have to suffer through such agony. The lessons I
take from my experience is to live in the moment, even if it only lasts for
a single moment. I take nothing for granted. I have great empathy and
charity toward others who have suffered losses worse than mine. Please
don’t ask me to stop my pain medications. So few work for me as it is. I
want to get better so badly. I don’t know how much longer I can live like
this. Thank you for responding to my post. I appreciate it.

@dawn_giacabazi

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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Thank you for that history. It is very helpful. It certainly is apparent you have tried many things as far as medications and alternatives. I am certainly not advising you to stop your medications as that is well out of my scope. Just some Alternatives that have helped. I was in a bad car accident which resulted in multiple injuries including a fracture through my sternum manubrium joint, broken clavical, broken foot, multiple fractures in my back, post-concussion syndrome & partial complex temporal lobe seizures. I had migraines daily so bad that I could not open my eyes to see I could not stand sound. I had seizures daily. We tried acupuncture, acupressure, chiropractic, physical therapy, water therapy & Reiki along with biofeedback, nerve blocks. I had 12 to 22 injections every week for a year to my skull (greater and lower occipitals), sternum and multiple areas of my back. Tried many, many drugs with horrible side effects. Some of those drugs include Klonopin, Neurontin, Depakote, Dilantin, Tegretol, phenobarbital, keppra & the worst was Stadol. I was admitted to Mayo Clinic ( Rochester ) Seizure clinic & went through their Pain Rehabilitaion Clinic. http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

They took me off all my meds very carefully and strategically. I am now 100% controlled with Trileptal. 10 years seizure free & I use Frova for any break through headaches. For me, I have no nasty side effects from the these medications.

Congratulations on your weight loss.
Praying you find comfort.
Dawn

@dawn_giacabazi

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 have not even heard of some of these medications. I wish my doctors would try something different for me! The pain is getting worse not better. I saw my GP today and she thinks things are going well because of all the labs. My blood pressure was 178/118 and that goes up and down, everythings else was okay. But wouldn’t the high BP indicate pain?

@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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I have never had this experience befor and it sounds very scary! Hope they figure it out!!@

@granny998

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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Sometimes surgery is good. But always find the best dr. U can. The last thing i wanted was surgery…but i almost lost the use of my legs by putting it off thank god for my man who made me go and get it checkex out. It has been 20 years ago. Although the pain is still there…i can walk thank god for that. So see about getting that checked out to make sure you dont get in a worse position!!! Hope this finds u on a good day. Sharon

Thanks to All tonight. I hve a pain clinic appt on friday. And a nuraloigest appt on the 29. Because of all the information i recived from reading your posts tonight, at least i have a million questions to ask!!!!thank you all for your kindness in sharing you stories! Hopefully this will start some good dialog with my drs. God bless.

I’m Jim, turning 66 tomorrow, 8/10/16. I’m here because of idiopathic peripheral neuropathy pain and for mental health issues, specifically depression, anxiety and PTSD. I’ve been seeking help for the chronic pain for around 3 years. Clinical depression was diagnosed 13-14 years ago. I’ve seen therapists between 2006 and 2015, and see a psychiatrist to check in with meds every 3 months. Dealing with such long term depression has been difficult and discouraging. I’ve tried every medication available to treat neuropathy, now on Cymbalta, tapering off morphine sulfate. Duloxetine (Cymbalta) is the last med on the list.

I retired at 55 on the advice of doctors and a psychiatrist, and was approved for Social Security disability for mental health, including multiple suicide attempts. My wife and I have only my Social Security income, but we’re fortunate to own our home, with no mortgage and no car payments, so with EBT and a couple of other assistance resources, we can survive.

I don’t know how much of this introduction is made public, so I’ll leave it at that.

I am 63 years old. I was diagnosed with fibromyalgia, CMS and chronic fatigue syndrome in 2007. At the time I had a viral panel done that showed that, while I had antibodies for nearly everything except Lyme Disease, I had an active Epstein Barr infection. While I have never been able to make the connection, I don’t believe in coincidences.

I am lucky enough to be able to work from home. This gives me the schedule flexibility to function.

I have been through all of the medication protocols that the “experts” around here come up with, and none have worked for me. I had terrible reactions to Lyrica and Cymbalta, and the rest didn’t work. Despite what doctors think, anti-depressants do not work as pain killers for me.

My most recent issue has created terrible problems for me. 16 months ago I had serious open rotator cuff surgery. This required amputation of the end of my collarbone to remove large bone spurs, as well as repair of a large, full-thickness rotator cuff tear. I went through 6 months of PT and continue to work out at a gym. However, I still have severe shoulder pain. I have seen pain management specialists, neurologists and rheumatologists. Those who didn’t make me worse told me to get lost.

I really think I have reached the end of my rope, and don’t seem to have anywhere else to turn.

@suesiegel

I am 63 years old. I was diagnosed with fibromyalgia, CMS and chronic fatigue syndrome in 2007. At the time I had a viral panel done that showed that, while I had antibodies for nearly everything except Lyme Disease, I had an active Epstein Barr infection. While I have never been able to make the connection, I don’t believe in coincidences.

I am lucky enough to be able to work from home. This gives me the schedule flexibility to function.

I have been through all of the medication protocols that the “experts” around here come up with, and none have worked for me. I had terrible reactions to Lyrica and Cymbalta, and the rest didn’t work. Despite what doctors think, anti-depressants do not work as pain killers for me.

My most recent issue has created terrible problems for me. 16 months ago I had serious open rotator cuff surgery. This required amputation of the end of my collarbone to remove large bone spurs, as well as repair of a large, full-thickness rotator cuff tear. I went through 6 months of PT and continue to work out at a gym. However, I still have severe shoulder pain. I have seen pain management specialists, neurologists and rheumatologists. Those who didn’t make me worse told me to get lost.

I really think I have reached the end of my rope, and don’t seem to have anywhere else to turn.

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I sure know how you feel. I had the first spinal surgery at age 18 another at 35 then the Kypo at 72. The hip replace at 74 and severe rotator surgery at 76. Now at age 80 I hurt all over. The 4 compression fractures, hip, and shoulder. My medication just isn’t working. I see the neurologist in two weeks. I hope he can do something. I just don’t know what to ask him, other than ‘I HURT’! They then ask if I am depressed, Who wouldn’t be when I hurt for this long. My husband of 51 years passed in 2009. I do have a active social life with my church (when I feel like going) so I don’t just sit around and feel sorry for myself. I also have mild COPD and Sleep Apnea. I know there so many others much younger than I in worst condition. I thank God for every day.

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