Pain Meds Help Me Live

Great article. I suffered from chornic pain since early childhood and was finally diagnosed with MS at 39. At 64, I have progessive MS and simple things like showering, standing have become excruciating. I find relief biking on my theracycle. But sleeping, walking, standing while cooking all are painful. I am looking into buying a handgun. I have reached my limit.

That's why she moke medical marijuana I'm allergic to all manmade pain medication@!!!@.

I was so happy to read what you wrote. Have 30 illnesses including ms, which has come with crippling paying since 2010, and can't get any pain management due to opioid problems in country, not me. My legs are worse ,but have throughout body. Cry every day. No family, but x-husband, who is not always available. MY PAIN HAS ALSO BECOME EVEN MORE UNBEARABLE. NOBODY CARES. WAITING FOR MY TIME JUST 2 BE OVER. A NIGHTMARE. THANKS FOR SPEAKING OUT FOR ALL OF US. KAREN

First time reading your column and I enjoyed it. I admire your faith, honesty and positive demeanor. Lots of love you you Jenn!! ?

Hi Jennifer.

Your article is excellent. I have lots of pain through MS and subequent falls because of MS. I am an optimist too. We have to keep trying everything possible.
I love the sunshine and hearing the birds sing. This always makes me feel that little bit stronger.
Kind regards
Fionax

Yes, I too feel like you, that those of us, who truly need narcotics and do not abuse them, seem to be penalized for doing the right thing. Have you tried Medical Cannabis yet? After being on morphine for 18 years, and being allergic to other narcotics, the next step is to try medical cannabis, yet, I will have to pay out of pocket. It is probably less harmful then those other drugs!

Hello Jennifer, my name is Matt Eddy, I’ve had MS for 38 years and have traveled to various places
Around the world. I’m pretty much in the same boat you are. I’m going to Dr Simon Yu in St Louis next month. Check out his book “accidental CURE” and YouTube. I think he’s got the solution! Also, check out Dr Alan McDonald and MS on YouTube. Blessings

After one of my quarterly appointments with my pain mgmnt dr I made my next appointment and was told I either saw one of his PA’s or wait weeks to see the dr. I find this happens a lot, you see the Dr a cpl of times and then you are passed off on to a PA. One told me about and offered a DNA or blood test that would be able to determine which medications my body would respond to the best. Now that sounded great, who wouldn’t take the test. Unfortunately she left out the fact that my insurance wasn’t going to cover it. Yea I could have asked but she might have volunteered that not so little but of info. I never paid the bill and switched Docs to my current one.
Anyway as I said earlier I was eventually passed off to one of the PA’s in the huge Ortho clinic. My first visit arrived and when he finally came into the exam room we talked about what was going on, along with the MS pains I shattered a vertebra in a car accident and cracked another in MS rehab. I haven’t known a day without a pain level of at least 4 but average between a 6 or 8 and easily can be at a 10 in no time. I hate weddings because of the banquet chairs. So this PA gets to writing my refills I said that I needed my Oxytocin refilled. This is where he looks at me up and down and asked what strength. I keep a list of the 12 different drugs I take but had forgotten. He started grilling me as to why I didn’t know the strength and if I had tried to not take them. All the while I’m wondering WTF? Has he never heard of MS much less a severely broken back? And that computer sitting there has all the information he needs, instead he gets up walks out of the room and disappears. When he comes back he starts talking about maybe switching me to extra strength Tylenol. Just then the door pops open and the nurse sticks her head in the door gives me a look up and down like I’m a crack addict trying to pull one over. Never in my life had I ever been treated like a drug addict and scum.
I had a dear friend who had a broken back like myself. Sherry tried to cut back on the Opiods. Her Dr cut her Rx back too. Sherry put a shotgun in her mouth and blew her head off.
Big Pharma is to blame..period! Pushing their pills and paying off Senators and Congressmembers to keep Marijuana illegal because they know that It works. I cut my opioid use nearly in half because I Vape almost nightly. We also need to weed out bad Doctors, PA’s and NP’s. They are the ones writing the scripts, usually for a Big Pharma kickback. Just like handicap placards are given out like a lollipop after a Dr. visit. Go after the Dr.s and a good amt of the problems would be cut back.

"yet have one commonality: pain."

I was diagnosed with Relapsing-Remitting MS over 30 years ago and have had no physical pain due to MS (but have had mental pain - depression, which I understand that about 60% of people with MS do) - for which I am thankful about no physical pain. I have not walked a mile in your shoes and I wonder what percentage of people with MS do have physical pain due to MS. Probably a higher number than I realize.

I have been worried about this crack down and will affect those of us who need to use it. My life without Vicodin has me spending my time in bed. Don't like to be in bed!

To Alex-
Sorry you had a rough time with your providers however, it is your responsibility to know your meds and doses. If you can’t remember them then you should write them down on paper and keep it with you for your appointments. Also, Oxytocin is to induce labor not treat pain. I’m sure you meant OxyContin but you really need to take responsibility of your health.

I agree! I have RMMS with spine and stomach trouble hurt all the time! If you can't get relief with exercise if you can do it and controlled dr pain mess where do you get help with chronic real people with real illnesses to get help

I am an 81year old woman and have been going to my local swimming pool for approx. 15years just gently water jogging for 30mins 3 mornings a week I still get pain in my legs more so when I go to bed but it is not as bad as the days I dont go and if I have to stay away for any reason it gets worse and I stiffen up badly sometimes I wonder what will happen when I am not able to go but I really enjoy it so much will keep going as long as I can.

Great article, I so enjoyed reading it. I was diagnosed with rrms in 2015 but as we as we all know I was having symptoms before that.

I’d like to really thank you for writing this article. I’ve been diagnosed with MS for over 21 years and for the past four years I’ve lived with debilitating chronic pain to the point where I don’t leave my house often. I’m no longer able to work and it’s become very isolating. My background is in clinical pathology and I have tried every single drug, holistic methods and nothing works! I’m thinking about a Nerve Ablation. Has anyone else ever tried that?

Thank you for writing this. I'm not sure what country you are in(guessing the states)but it is NOT mandatory to follow these "mandatory" prescribing guidelines in Canada. Here we also have been hit hard with the opioid crisis. I had to do my own sleuthing to figure out the mandatory prescribing guidelines and what exactly it meant here. I spoke with the college of physicians myself and my own doctor (who is the best) did he own digging on what exactly this meant. long story short, it IS still between you and your doctor to decide what is the best option of course there must be a well documented medical history and the normal we've tried ALL these other things etc. It is still 100% between the two of you.

I feel like I should start with “hello, my name’s Denise and I have severe chronic pain “. Thanks for your message. I’ve had MS for over 21 years. I also have fibromyalgia, Crohn’s disease, thyroid disease (including hypothyroidism for a couple of years, and an immediate change to severe hyperthyroidism which caused a Thyroid storm (thyroid hormone toxicity (which is fatal 75% of the time and spent days in the hospital). My PCP called an ambulance when my pulse was in the 170s. (My thyroid hormones were frightening high), I’m taking beta blockers to lower my heart rate, but due to my very low blood pressure there’s been concern that the medication may lower my blood pressure (already only 98/50) which can be fatal. My doctor didn’t want me alone but I’m not able to pay for round the clock medical help. My new boss at work (where I was transferred to train him) Has been ignoring my reasonable ADA accommodations, (set in Feb 2017) before he was hired in Sept 2017, has seriously exacerbated my illnesses by ignoring all 3 of my ADA accommodations. I had huge medical co/pays and lost my job of 11 1/2 years And my health insurance because of this new manager. I
also have osteoporosis, Postural Orthostatic Tacycardia (POTS) which is an auto dysautonomia disease that defeats my circulation and my blood pools with gravity. Lifting my head, Sitting (which brings my pulse to the dangerous rate of 145 and standing (pulse of 189), which can also prove fatal. I was recently notified that my adrenaline levels are higher than my doctor and his colleague who is a POTS specialist, have ever seen. I’m bedridden, and can’t even lift my head due to pain so serious I’m “praying to die”. The headaches, digestive pain, seriously painful nerve damage, loss of vision, brain fog etc.

Morphine has never affected me at all and the only pain meds that have done any good are Percocet and dilodid. Both of these make me scratch until I bleed. This hurts my long term position that there is always hope, and a positive attitude always helps.

Marijuana is not legal in my state, and although I trust my PCP, I’m at a loss as to my options to decrease the pain I’ve been plagued with for so long I can’t remember a time without it.

I feel out of options. I’ve tried hypnosis, counseling, tens units and still my digestive, nerve, fibromyalgia and MS pain is killing me slowly.

Sorry to say so much. I don’t share this well with friends or family who have no way to understand. I know there are so many people that live with and excel despite much more serious situations. But I’m desperate.

I’ve had other painful illnesses, many broken and crushed bones and 17 surgeries. After some of the surgeries my doctor purposely gave me addictive pain meds that don’t have any effect and 4 hours later, in spite of me reminding him I couldn’t take that medication, he gav it to me again. I spent 8 hours after a hysterectomy with NO pain assistance. I do have a very high tolerance for pain.

Any thoughts or ideas would be hugely appreciated. Thanks for letting me share.

Denise

Hi. Thank you fof this article. I am 32 years old. I have had MS for 17 years.15 with Relapsing Remitting and 2 with Primary Progressive. I have chronic pain in my feet, legs, back, and neck. I have been going to a pain management clinic for about 4 years struggling with my medications always being changed on me. The hydrocodone was what worked but they kept reducing the amount of hydrocodone and giving me things like Morphine, Oxycottin ER, Hysinglia, etc which all made MS symptoms worse. I have always been a good compliant patient. I have to use a wheelchair to get around. Anyway, I had messed me back up picking my 6 month old daughter up while sitting in my wheelchair. Therefore had to take more meds than usual to ease the excruciating pain in my back. Now, please understand that I was not aware that I was not supposed to do this. I didngvrealize that it was that big of a deal. When I was handed the contract to sign, the nurse handed it to me and said " Please sign this. It is a pain contract." This was after being treated for about 3 years so I didnt read it and just signed since I didnt have my glasses so cohldnt really see it anyway and after taking meds for 3 years of course I was goin to sign it. Well, about a week ago I was called in for a random pill count. I went in with my meds, they counted them and I went on my way. The day before my next appt I called to confirm my appt time for the nextvday and was told that I had been discharged without being given the reason. She told me I should have received a letter. Well, I hadnt received itand didnt receive it until the next day which means if I wouldnt have called I would have went to my appt the next day and had to find out thrn. I was offered nothing to help me ween off or anything and was about out of meds. Now, due to this, I am still going through withdrawals and am now confined to a power chair. I have excruciating pain in my feet, legs, back and neck. The pain management clinic gave me relief and better quality of life and then took it away and made things so much worse. While I nderstand the need for control of oa pain meds I do not understand why it has to be at the expense of good people that are in pain.

Hi and thank you for being brave and writing your article. My Name is Nicole, I'm 43 years old and I've had MS since I was 21, now my MS has progressed and I have Secondary Progressive MS and Fibromyalgia as well. Since my 20's I've been on Copaxone and it helped my relapsing-remitting MS pretty well for about 15 years. Then I had too much pain doing the injections and too much scar tissue and when I turned 40 I had the worst relapse ever; I had spasticity all over my body, the MS "Hug", fatigue that was horrible, dizziness, etc. I did a round of IV steroids that really made things worse and didn't help any of my symptoms at all. Bc I had problems with the IV, they had to stop my steroids in the middle of my dosage - and when I asked to get my steroids finished I found myself in a hospital and my Neurologist suddenly was questioning if I even had MS and they were asking for an MRI to prove that I was going through a relapse when I couldn't even lay flat bc of the MS hug and problems breathing, and then my doctor accused me of asking for chemotherapy! So anyway, I was going through hell and the spasticity and pain and chronic pain in back was awful, all I could do was ask my primary physician for pain meds; I believe at the time she put me on oxycodone, and that got all messed up, she prescribed me the wrong amounts, either too much or too little, the stopped me cold turkey. I went through withdrawal and then got on suboxone . This had not been my first time on suboxone; in my younger years I had two abusive boyfriends and one injected me with heroin when i was suicidal and i agreed bc i was stupid and got addicted, so therefore i have a drug history that I can't erase. To make this long story shorter, a few years back, when i wasn't on anything for pain, and when i had tried all preventative MS treatments that disagreed with me, I was suffering, and so I had no choice but to go on suboxone bc no pain doctor or even MS doctor would treat my pain with regular pain meds. Then, a miracle happened, I finally had the support of a nurse navigator and after a long discussion with my primary physician, I was put on morphine, and I started to see a great MS doctor who eventually took on giving me my pain meds. Everything has been great until recently when I was in the hospital on dec. 30th 2018, and i opened up my morphine bottle, and my half of my pills were gone. I reported it to the police, told the office of the Neurologist (my current MS doctor) , and of course, they can't replace stolen medication. Now, after all of my hard work, and being clean for over 7 years, I can't even talk to my doctor, I'm going into withdrawal, and looks like I'm screwed and will have to go on suboxone again. i am devastated. I am trying to keep hope; I feel there should be exceptions to these rules? I see my Neurologist on the 22nd and I'm praying that he'll realize that suboxone may not be the best solution for my pain or all symptoms in the long term...and that I deserve a second chance. I needed to tell you all my story ... please keep hope and live for today and believe in yourselves. Much love and peace.

I have had RRMS since I was 18. That’s almost 30 years ago. I’m allergic to so many medications it’s not funny. All antibiotics are allergies and steroids give me something called Posterior Reversible Encephalopathy Syndrome so when anyone else would be given steroids I either have to lay in bed for months or do plasmapheresis. My current biggest problem is that I have to change pain management doctors because I cannot get to him and he doesn’t take insurance so I can no longer afford his $250 every 4 weeks. I can’t find any pain doctor willing to take an MS patient. I’ve called about 30 doctors, MSAA and pain management corporate websites and everyone says no once I say MS. I am at a point where I can only leave my bed when I have my Tysabri appointment. It’s not working I’m getting worse but all the other medications require steroids be administered with them. My neurologist won’t give any pain medication. I’ve been on the same medications for about 15 years and they work fairly well (vit D, Doxepin cream and norco). All I need is a pain management doctor that takes my insurance. I used to take stronger pain medications to sleep but switched to medical marijuana which works really well for sleeping but I can’t use it during the day. If anyone on Long Island has a pain doctor willing to take an MS patient please, please tell me who they are. I have a friend that also has MS and needs a pain doctor. I also have extreme migraines and very bad vertigo. I really need a new pain doctor please.

How can I talk my suffering boyfriend out of getting a spine stimulAator? He was treated for back pain for 10 years with epidural injections, which, surprise surprise-have led to an extreme worsening of the problem. He cannot stomach pain pills he throws them up. He’s 53 they want to insert a spinal cord stim now. I’m absolutely terrified this might just kill him. I think a pain patch is the best option for him. He doesn’t “want to be an addict” please share why he shouldn’t have this procedure. I’m desperate to stop him.

Without oxycodone, the only pain med I can tolerate and in small doses in evenings at that, my house is a mess and all I want to do is sit or lie down.
I also have ms and the effort it takes to walk and move my body is so hard and exhausting that this dose at night gives me the ability to carry on and keep my house clean, cook, laundry, food shopping and so on and so on, always so much to do but not having the body to do it anymore.
I dont care for the brain chemistry change when on the medication, it does have a sort of controlling aspect to it and I feel mentally cleaner without it but not physically stronger. Its hard to choose do I want to physically get through life on the medication?
All I know is without opioid type pain relief, all lifes daily chores are completely unmanaged. I am totally unable to really complete anything, mainly from my legs.
Everyone knows what it feels like to try to walk through water. If you do that for hours and hours and what your legs feel like and how sore you are that evening, well try having that feeling each and every day, its so so painful and the stiffness is unbelievable and it doesnt come without severe back pain with all the trimmings too, right? Many you ms'rs know what I mean.
I dont know, I know the majority says you dont need it as much as you think, just try, its dangerous, its this, its that.
But it does come down to walk one week in my shoes, that is if you can walk, and then lecture me on staying away from oxycodone and just deal with pain and unmanagable stiffness in other ways.
Dont lecture me on side effects, a lot of things have side effects, some can be deadly, look at some of the biologics for ms itself, some have even been documented to cause cancer and other dangerous side effects of immunosuppressive biologics but the "benefits outweighs the risks".
I pray I find a doctor to give me at least 6, 15 mg oxycodones per month so I can split them in half and get 12 doses which means 12 good work days per month, I think I can kind of manage my home with that. Good article, very well put for those with ms and pain.

I have had M.S. for about 30 years and pain has been a constant factor, debilitating pain. I had been on opiates like morphine for about 25 years. Now I am on tramadol and lyrica. Now I can't work, I can walk (Very slowly and with a limp) only about 50 yards. It seems about the only thing I am really good at is being unreliable, even to my self, my balance bad enough were I am defiantly like a bull in a China shop. If I didn't have the pain I could still work even running a small ad agency... which us completely out now. I am on disability. Which is not enough to live on. It seems the medical society focuses more on quantity than quality. Like you can live 80 years of sheer hell instead of maybe 50 really great years.what can be done. I have even thought if I know of street dealers that deal with pain meds. I may just do that except on disability, God you can't do that. What can be done ? Certainly I am not the only one in this situation.... as a sort of distasteful joke I have maybe with some seriousness is "where is Dr Kevorkian when you need him."

I'm also trapped with MS pain, with no help. I was on pain medication for years, without 1 problem with my physician or drug screens or pill counts....not 1 problem, but then my physician quit prescribing them to all his patients. I was placed on subutex, in which I thought was for addicts. I managed my medication very well and felt abandoned. I did give it a try, but it just didn't help with my pain. I've reached out to my physicians regarding this matter, but still after a year of living in torturous pain,they still have me on it. My health has deteriorated so bad, I never hardly get out of bed and feel that my life is worthless. I've considered finding street drugs for replacement, and am certain that is what I must do at this point.I figure I either die from this pain, MS, being in this bed constantly or give street drugs a try, they may kill me, but I'm dying from this life situation. So, if I can find something on the street that works, so be it. I know other people who's actually overdosed off heroin,trying to get some sort of pain relief, when their physicians stopped their pain medications. So, I honestly think someone should be held responsible for those deaths. There's many many people whose even killed themselves from not being able to live with their pain, what the government doesn't understand is THEY ARE KILLING PEOPLE, OR MAKING GOOD PEOPLE INTO HEROIN ADDICTS OR TURNING TO THE STREETS FOR SOME SORT OF PAIN RELIEF.

Thank you for this website. I can see I am not alone. I had my pain treated as well as it could be by a MS Doctor where I lived for 45 years. I had to move across the country to get my Mom out of the nursing home and back into her home. The pain clinic where I live now took me off the Fentanyl patch. The will prescribe a really low dose of hydrocodone but I have been in horrible pain since. My only options are a spinal stimulator or pain pump (priate). I just don't know if they will help. If anyone has either implanted in them and it help, please let me know.

I'm a 73 year old with MS for 37 years, yes 37. I have just recently needed some kind of pain medication but was told I just have a lot of fatigue and do PT. I have had exceptional care in Denver, right up until the last 7 years when we moved to a hellishly hot AZ city and I have recently deteriorated a lot. Also due to the hellishly incompetent medical facilities available here. We are moving back to Colorado, not that anything will change but I do have to try something else, somewhere else. I'm spent, Also, after 53 years of marriage, my husband thinks I'm faking it.