Chronic Pain members - Welcome, please introduce yourself

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.!

Hi Dawn. Coincidentally, I just had a similar genetic test offered by<br>Assurex. My psychiatrist provided it to me. Medicare covers 100% of the<br>$5500 test, but my insurance wouldn't cover it. Luckily, they provide a<br>sliding scale cost structure. The maximum out-of-pocket expense for<br>patients is only $330.00. The test covered my liver's ability to metabolize<br>ADHD meds (not applicable to me), Opiods, antidepressants, antianxiety<br>meds, anti-seizure type drugs, and one other category I can't recall. Here<br>is what I learned: I am on the proper opiods and metabolize normally<br>("green light meds.") I am on Cymbalta, a "yellow light" med, which for me<br>means that I may need a higher dose than 120 mg. The other antidepressants<br>in the "green light" category for me all cause weight gain. I lost 100<br>pounds 2.5 years ago, and I am now at normal weight. Recently, after two<br>months on Depakote (not an antidepressant but a seizure-type drug) I gained<br>20 pounds. I stopped the med. I will not gain more weight again, so I am<br>not interested in changing antidepressants for a "better" choice. Regarding<br>anxiety-type meds, I am on exactly what I should be on: klonapin. Now I<br>know why ativan and others were not effective. For the anti-seizure type<br>drugs like neurontin, all were in the "yellow light" category, with each<br>med having abnormal, unique metabolic results. I lost 2 years of my life to<br>neurontin; now I know why. Topamax, which I took 400 mg per day for 15<br>years, was not noted on the test. In any case, it was not very effective<br>and I lost IQ points, permanently, I fear. I have been off that drug for 2<br>years and I still can no longer remember names, faces. I have trouble<br>finding my words still. For a brainiac like me, this is devastating. To<br>wit, I cannot recall the final category of meds, but folic acid is in the<br>"red" category. Enzyme #6 in my liver does not function at all, and my body<br>cannot convert folic acid to folate. Low folate levels are linked to heart<br>disease and Alzheimers, both of which run strongly in my family. I<br>researched forms of folate available to consumers, and chose the one that<br>does not need to be metabolized by the body. It is expensive, as I avoid<br>unnecessary additives as well, but I now take that pill every day. To<br>summarize, besides a needed boost in Cymbalta, I am on good medications for<br>my body. Does the test you mentioned cover additional drugs or drug<br>categories?<br><br>Dawn, I am aware of the cold turkey theory. In fact, I tried to get an<br>appointment at the Mayo Headache Clinic in Rochester, 2 hours from my home,<br>but they wouldn't even schedule an appointment with me until I am 2 months<br>free of all drugs. It is a great theory, but torture to live through. As it<br>is I barely make it through a day without excruciating pain. I am allowed 2<br>days of fioricet, 2 days of percocet, 2 days of rizatriptan. I am not given<br>enough of any of the three meds to follow that schedule, so I have many<br>days on no pain meds. I must point out that I am triptan resistant, and<br>take the pills as a placebo only, hoping my positive nature plus the pill<br>will give me relief. It rarely does. I receive moderate relief from the<br>incessant pounding with the percocet (vicodin is ineffective for me, as the<br>genetic test noted.) I get even less relief from fioricet, which I have<br>been on and off over the years. I supplement the Rxs with benadryl, which I<br>get via IV in the ER, so I figure there must be something to it, zofran,<br>and cyclobenzaprine. I forgo klonapin when I take percocet. I know the drug<br>interactions and safety comes first because I have 2 kids in their early<br>20s. I cannot take NSAIDS at all by mouth due to Roux-en-y, but I do<br>require IV Toradol in the ER. It is part of my cocktail. I avoid Tylenol<br>because it is in the percocet and fioricet, and it causes me rebound<br>headache if I take acetaminophen more than twice a day. I will be in the<br>mental ward of a hospital if I go off of klonapin or Cymbalta. I tried to<br>reduce Cymbalta to 90 mg/day, and I just about had a nervous breakdown<br>within days. Physically, I cannot tolerate any more pain. I spent $700 on<br>the ThermaZone machine, which circulates ice cold water around my head<br>nearly 24x7. It replaces the IceKap and other "ice hats" that melt quickly<br>and don't last long enough. Ice helps numb the pain; it dulls it<br>significantly. I am true to my word that I will need long-term<br>hospitalization if I have to suffer worse than I do now, for any length of<br>time. I have gone above and beyond by utilizing alternative and<br>non-medicinal therapies, to great personal expense. Until you have walked<br>in my shoes, not other migraineurs' shoes, but my own, you cannot possibly<br>imagine the low quality of life I have. Mine is a life unlived. I question<br>why I was even born, to have to suffer through such agony. The lessons I<br>take from my experience is to live in the moment, even if it only lasts for<br>a single moment. I take nothing for granted. I have great empathy and<br>charity toward others who have suffered losses worse than mine. Please<br>don't ask me to stop my pain medications. So few work for me as it is. I<br>want to get better so badly. I don't know how much longer I can live like<br>this. Thank you for responding to my post. I appreciate it.<br><br>

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

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?

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

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.

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.