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Living With Fibromyalgia - Online Support Group

They keep taking away my meds; I don't want to live like this!

#1

When I went to pick up one of my pain meds today, the pharmacist told me that my insurance did not want to pay because of this new law limiting MME’s (morphine equivalents). What they (Congress, public, etc.) don’t seem to understand is there are those of us who follow every rule to the “T”, who are not addicts, who see our docs every month and NEED our meds to even be able to walk. I have had FMS since 2005. In addition to that, I have osteoporosis of the spine, hip and neck (I am 54), I also have osteoarthritis, multi level degenerative disc disease, slipped discs L4/L5, bugging thoracic discs, and facet arthropathy. I saw a neurosurgeon in July, who wanted to do lumbar fusion surgery (major procedure) got a second opinion, he said that would cripple me and had me see another doc who works with him that recommended the medial branch blocks then radial frequency ablation. The blocks did not work, so I cannot have the RFA. In the meantime, as my meds are getting taken down (I voluntarily took some of them down and eliminated another) my pain is getting worse. I get up between 2-3am every day and am up all night with pain. I can’t sleep with my husband because I toss and turn too much; I am chronically fatigued, I get anxiety and panic attacks as well. I personally do not think that taking away meds from those of us who truly need them and who have tried alternatives (which I do in conjunction with the meds) and are NOT addicts, have had the same doc for years, etc., should not be punished. This will NOT help the “opiate” crisis because WE are not the problem. I tried CBD oil, which did nothing; they just legalized medical marijuana in my state, MO, but I don’t want to get high, I like having my faculties all together and my doc is conservative, so I don’t know if he would even prescribe it. Today I am feeling like I don’t want to live; just crying and crying. I don’t believe in suicide and unlike so many of you, sadly, I have great family support, a loving husband and all my furbabies that need me, but I just don’t know how much I can take! I am only 54, what will 64 or 74 be like? I was a Corporate Accountant for nearly 30 years and have been on disability for 3 years; I can barely walk even with my meds. Are any of you dealing with this and your doctors? I know many of us have other medical issues along with the FMS and many of us benefit from opiates and other therapies, but what will it come to? Is there a point in life where you just don’t want to live in pain anymore? Thank you!

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#2

Your phamacist is wrong. I work for one of the largest prescription benefit management companies and I can tell you without even knowing the name of medication or amount that’s not correct information.

  1. I’m confident your insurance will help pay for it, you need to get what’s called a prior authorization, your doctor’s office needs to call in and answer clincial questions about your therapy (the number they need to call appeared on the rejection at the local pharmacy)… they can also call member services, as can you, to get the proper coverage information, your doctor is very familiar with this process

  2. it is not a law limiting morphine equivalents, it’s dispensing guidelines, it’s been found that doctors are not aware of the morphine equivalent of medications (and why would they be? that’s chemical math your pharmacist knows, not your doctor) and there have been cases of combination prescribing of different meds creating prescribed overdoses – think of Heath Ledger accidentally killing himself by taking prescription meds with OTC meds, your insurance company is trying to help you avoid that situation

  3. your insurance company has put a prior authorization into place as a safety net for you, not to deny you medication… doctors are human, they make mistakes, they also know diease, they don’t know the nuts and bolts of the medications they prescribe, that’s the job of your pharmacy and your insurance company puts authorizations into place to make sure something is potentially dangerous is flagged… also, no one wants to hear this or think it applies to their doctor but someone had to be last in their medical class, it could be the doctor you’re currently seeing

  4. cost factors into some prior authorization requirements, as does safety and effectiveness of therapies, often insurance companies want you to try the tried-and-true thing first before trying the latest-and-greatest (and often most expensive) option

  5. one good thing that has come out of the largely incorrect naroctic hype is a new awareness of how the meds work best – how acute pain differs from chronic pain and how to better use the medications for those situations, some prior authorizations are put into place to help with that… for example, several states do have fairly new laws that limit ACUTE treatment to 7 days per refill, often will a limit on refills… why? becuase by definition acute situations begin to resolve, if not complete resolve, within 2 weeks – think morphine IV in the hospital after surgery, they don’t send you home on that level of medication, the acuteness of it resolved before you were released, same with pain meds for a broken bone, within two weeks healing has started and pain levels automatically reduce as should your use of pain meds… chronic is different and has different guidelines

Let me know if you have questions or want guidance through the prior authorization process.

azurelle

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#3

Thank you, Azurelle, my doctor did do the prior authorization as he does at the beginning of every new year. Today, the pharmacist told me because of the new bill just signed, insurance companies are not wanting to pay because apparently this new bill has a limit or is trying to limit MMEs. She did get it to go through, but I have been told they will continue to cut down the meds that those of us, as I said, who follow the rules to a “T” will be able to get for our legitimate issues. I did not want to put in the forum what I take, but I have no problem telling you. I wear a 75mcg fentanyl patch (down from the 100mcg) and take 180mg Oxycodone daily (1 every 4 hours) - also down from 240mg daily. I did calculate my MMEs and I think it’s around 700-800 a day. I also do acupuncture, some chiropractic (had a bad adjustment that caused me additional injury), I stretch, walk on my treadmill, still do my housework, etc., but at a slower pace, eat healthy, take some supplements, see a therapist once a month just so I don’t get too depressed over being in so much pain [(I had a serotonin storm so I can’t take anti depressants (which I personally think are sometimes over prescribed as a “quick fix”)], I do everything by the book. I do not drink ever, no illicit drugs, ever, etc. I have tried the suggested procedures, as I explained, and will be seeking a third opinion. I do not want back surgery as so many people I talk to have done that and sometimes they end up worse or have multiple surgeries. My husband and I take care of 19 rescue dogs, mostly seniors, they are our personal dogs but we used to run a 501c3 in Phoenix, so I am responsible to them as well. My personal opinion is the government needs to stay out of my medical plan; this is NOT a fix to the addiction problem. What is going to happen is it will make more people go to the black market, which I wouldn’t have a clue about, and is just going to make more people, like me, contemplate suicide when the pain is just too much. Just this last month, two people in another support group I belong to, committed suicide - one of them my friend’s 86 year old grandfather who hung himself after his doctor took him off cold turkey, I used to be a very productive member of society and had wonderful, high paying jobs in Corporate Accounting, now I can barely drive because my leg goes numb and I get severe panic attacks and anxiety, for which I do take meds, but voluntarily reduced them by 75%. The hoops doctors have to go through now are ridiculous! My doctor is a certified pain management doctor, so he is pretty knowledgeable and this is my 7th year I have been seeing him.

What’s left? I don’t believe in suicide for religious and moral reasons and know from experience with a friend who did this, that the family is left behind to clean up and they are very devastated. I am young, relatively speaking, and I don’t want to end up in a wheelchair. I have a quality of life with my meds but what will I have otherwise? The addiction problem cannot be fixed by regulations. People like me should not be punished because of a few addicts. What about alcoholism? Are they limiting the amount of liquor you can buy? What about obesity? Should they make a law that says if your BMI is X, you can’t go to McDonalds? What about cigarettes? They can tax them to the sky, but people will still smoke. These three things kill far more people than opiates. As I am sure you also know, people who OD are generally younger, white males who are poly drug users - not 54 year old disabled accountants. I know this makes the uneducated public (by uneducated, I mean understanding the true underlying addiction issues) feel better, but in the end, like to much the government does, it is going to kill many of us and make the problem far worse.

Thank you so much for getting back to me! And yes, I agree most pharmacist are far smarter than docs when it comes to meds. I always ask them questions and make sure that nothing, even supplements, that I am taking will cause an interaction because I have had that before.

Take care,

Deborah

#4

Time to see a pain doc. I have to see one each month and they give me a new prescription. The pharmacy won’t fill it until they get the new RX. It must be done each time I get a “refill”. Medicare does pay for it. Here in Colorado the Family Physician can’t prescribe it except for a very short period of time, nor can ER. They will refer you to a pain doc. We do have pain clinics and that is all they do is see people who need pain meds.

I can not take over the counter meds. They do nothing for me, so I need the prescription pain med.

#5

That is what I do as well; I go every month, get pill counts and often drug tests. My has to write new scripts every month, too. My doc is certified in pain mgmt. as they are the only ones who can prescribe the opiates. He said they are making it such a pain with all the new paperwork, etc. My Medicare supplement (Humana) has always paid for mine until this month since the signing of the new opiate law, insurance companies are trying to get out of paying for both. ( I wear a fentanyl patch for long term, as I am sure you know and take immediate release Oxy). Even with all that, my pain is, on a good day, a 6. Now that winter is here, as I am sure you know, my body just hurts that much more. One thing my doc does, which urks me, is my meds are filled from the 16th to the 16th or 32 days; he will not fill on day 30. Even with my patches, which are good for 72 hours, as I am sure you know, I can’t get them filled until day 31 when they are PAST being due to be changed! He is such a jerk sometimes, but he is basically one of only a couple of docs in this small town and I am in my 7th year with him.

Thank you, Ruth!

Deb

#6

I hear you LOUD and CLEAR!!! Something has to be done about all of This! I have enough ibuprofen to wreck my kidneys for eternity but that is NOT helping my fibro. I was on a great regimen for 8 years and all of a sudden…BAM!!! I have NEVER abused my fibro meds and I have tried several times to go it on my own only adding more pain and unnecessary suffering to my being. We are being forced to compromise and that is JUST PLAIN EVIL!!! I can’t stand this…because fibro sufferers have found new hope in this medication they now decide to take it away…WTH??? I am sick and tired of it…We should all sue the CDC, the FDA, And THE GOVERNMENT agencies responsible for creating fibro in the first place, I am not talking about a class action lawsuit either, I am talking about outright fullblown impact per person until they lay off the restrictions all together!!!

#7

I know what you mean about having your pain management denied you, not because of anything you have done, but because some people who do not need the medication in the first place have misused it. This is the worst thing that could be done. It is like cars keep getting flat tires and instead of changing the flat tire, the people in charge insist on buying a new car each time a tire goes flat. My Dr. and I have been working around this problem and I am still able to get some much needed relief from pain, but by using other types of meds that do not contain the forbidden ingredients. I will be 73 in the first week of December so I am also painful from aging elements.

#8

Hi Deborah!
I had to get off of Tramadol COLD TURKEY and I was heavily dependent on it to get through my day. It’s absolute garbage that medicine is being completely denied. That will only cause more illegal use because us poor people like you and me might feel desperate to get relief. I am so sorry you are hurting so badly. There has to be some kind of anti-withdraw medication so you are not in excruciating pain :frowning: I’m so glad you have a positive support system but sometimes we truly feel ALONE because it’s only you going through it. I have degenerating discs and slipped discs, and I’m constantly fighting the inner voice in my head that throws me into absolute panic, wondering what the future holds. Just focus on you happiness day-to-day, you deserve relief and I hope you find it soon. Much love!

Paisley

#9

Hi Deborah,
I feel bad hearing of your struggles because all of this stress just amps up the pain, too. I wanted to suggest a supplement that might help ease your pain. I am taking OPC Extra which is a combination of grape extract, green tea extract, and other good stuff. I tried it for a few days and noticed a lessening of my pain. Perhaps it will do the same for you. I take Lyrica for my pain and Effexor for the depression. And the OPC Extra. Since I’ve added the supplement, I have not had to take as much Lyrica as I was. That’s encouraging to me as I thought I would have to keep increasing the amount when the pain level started to increase.
It is so hard to get through the day when you are relatively young. I am 56 and worry about how long I can keep working but everyday I look for new ways to help my body stay as strong as it can be. Also, you didn’t mention exercise in your post. I’m exercising in the water 3 times per week at a pool. I cannot exercise on land anymore as it just makes me worse but the water really helps.
I hope these ideas might help as you look for ways to stay out of pain. It’s great that you have a good support system. And always lean on us. Take care.

#10

Thank you, Cathy, yes, I do exercise. I have a treadmill, I do regular stretching, as much as I can, and I care for our 19 senior rescue dogs which is vacuuming every day, doing laundry, dishes, cooking, etc. It does get harder. I have a horrible reaction to supplements. I tried to take a supplement to help with menopause symptoms and had a severe reaction to the valerian root in it. I am also severely allergic to gabapentin, Neurontin and the common FMS meds. I cannot take ANY anti depressants because my last stupid doctor upped my Cymbalta from 30mg to 60mg, although I begged him not too and I went into a serotonin storm within two days. Had I not known what this was (I do tons of research on all supplements and meds) I would have died; basically all anti depressants are off the table. I get severe panic attacks and anxiety. I take two .5mg Xanax a day (down from 3mg a day) plus Buspar 10mg twice a day which helps. I hate to go out, go shopping, etc. I can’t take crowds and all that. I loved working as I was a corp acct for nearly 30 years until I found myself crying in the bathroom because the pain was too much; I applied for disability in 2015 and luckily got it the first time. I do have a wonderful family and a very supportive husband, but he can’t really understand our pain; he doesn’t even take ibuprofen! I also have digestive disorder. I had an ERCP done, a bile duct stent put in and removed, but it did not take away the pain. I can barely eat anything and have lost way too much wait. If it were not for miniature candy bars, I would get no calories LOL! I did see two specialists for the GI issues and they both said it was neurological. I do not know whether it is related to my thoracic spine or the actual nerves that control digestion. I also have chronic insomnia, as many of us do, because of the pain. I get up several times during the night and usually get up between 230-3am. I have no children, either, so I worry about my future. My niece and nephew are very self-centered, a lot like my sister, so I don’t think they will care for me, but then again, they are in their 20s so hopefully as they mature, that will help.

Anyway, thank you so much for the input. I am very grateful for this group for even those of us with supportive family/friends, only we can truly understand our pain.

Take care,

Deb

#11

Paisley,

I also have multi level degenerative disc disease, osteoporosis (at 54) in my spine, hip and neck, I have two slipped discs at L4/L5 which I actually hear grinding together if I forget and bend too much, I also have bulging discs in my thoracic spine. I agree, it is good to have supportive family/friends, (I saw one post where a member said her family told her she was useless and should work, etc. - that is horrible) but as you said, we are truly the only ones who understand the pain. I am going to see a THIRD freaking neurosurgeon next month who has ordered three more MRIs, so I am looking forward to that. He is supposed to be the best in town and has a really good background. I really do NOT want back surgery - it seems people either get worse, or have multiple surgeries, etc. I just don’t think it is worth it. My husband and I used to run a 501c3 rescue in Phoenix and currently have 19 dogs, mostly seniors, we care for, so I stay busy with that and house work, etc. but I have to be careful, because as you know with our backs the way they are, it doesn’t take much to cause more damage/pain. I did get the insurance straighten out, turns out the pharmacist LIED to me saying my insurance wouldn’t fill it because of OCRA, the new opiate act, but what I found out is even though my doctor writes on the script "Do not fill until 11/16/18) and I point it out to them, they try and fill it on the 8th, so my insurance kicks it back. I cannot believe that pharmacist lied to me - she obviously has no clue what is in that bill. I am going to file a complaint with a manger - that is just not right.

I take oxycodone and wear a fentanyl patch, which help a great deal - my pain is about 5 at its best and usually 7-8. I have been with same doc for 7 years and follow every rule to the “T”. I do not drink , so illicit drugs, and I am sure, like you, I get drug tested all the time. There is also a lot of misconceptions about the opiate bills. They one is basically geared towards primary care docs - mine is a pain specialist - the newest one deals mostly with stopping the fentanyl from coming into the country mixed with the heroine, which I don’t think people understand how powerful fentanyl is, and also deals with SOLUTIONS like providing treatment, etc. That is what needs to happen. I live in a very small town and would not go out seeking drugs and couldn’t afford them anyway. Those things scare me. Missouri just passed medical marijuana, but I don’t want to get high, I like to have my faculties clear as my mom and dad have health issues and I don’t want a phone call saying mom’s in the hospital and I am stoned; not my thing. I do think that stronger CBD oil might help. My doctor is pretty conservative, he told me I could try CBD oil, but the stuff now just doesn’t do any good, especially with the amount of pain I have. I do walk on my treadmill, stretch to the best of my ability and with my 19 dogs, I do all the housework, laundry, cooking, etc so I try and stay active. I think one thing the public does not understand is that people like us who do take opiates do NOT get high - without my meds, I could not walk, period. I would have zero quality of life and I can’t make my husband do everything. He is 70 and thankfully in great health, but still that’s a lot. Opiate regulation started a couple of years ago and people are still overdosing, so it doesn’t seem to help much as people with get drugs, just as criminals will get guns if they want to kill. What they also don’t say is that the majority of people who overdose are doing many, many drugs, not just opiates, and what they also don’t say, is it is not prescription pills, it is heroine, which scares the crap out of me.

I am very grateful for the feedback and kind words. It is nice to have others who understand and know how we all feel.

Take care and thank you!

Deborah

#12

AMEN, Marjorie! We are not the problem! Of the chronic pain sufferers who use opiates, statistic show that only 2-4% get addicted and have issues. There is another group I belong to called the US Pain Foundation, who is fighting for our rights. They recently published a survey in which I took part and 86% of the pain sufferers used opiates. I write my Congress people all the time and read everything I can about the opiate bills. I do think some doctors are using this as an EXCUSE not to give us meds!! Most of the legislation I have read restricts opiate prescriptions on PRIMARY care doctors NOT our pain management doctors. Also, OCRA, the newest bill, is more about SOLUTIONS like rehab, education, etc. As I have made the point, more people who are LEGITIMATE will die either from suicide, because they can’t handle the pain or seeking drugs on the street, which terrifies me. WE ARE NOT THE PROBLEM! Like you, I must see my doc every month, used to be every 3, I have pill counts every month, and random drug tests. I have been with same doc for almost 7 years and have NEVER violated my contract. He still keeps taking my meds down even though at 54, I just found out on top of everything, I have osteoporosis. I also have a digestive disorder which after going through a bunch of needless tests, etc., I found out was neurological either related to my digestive nerves or my thoracic spine. I am going to see a third neurosurgeon next month, so we shall see. I do NOT want back surgery - I think that’s a scam because I know so many people that either get worse or have multiple surgeries. I am not sure where you live, but here in MO the weather is now getting cold, which I am sure you know makes the pain much worse. It was not as bad when we lived in AZ. I also get panic attacks and severe anxiety as well; I do not like to leave my home unless I have too. I also have SEVERE insomnia from the pain - I get up at 230-300am every day because I can’t take the pain and I have really good adjustable bed with a great mattress as well. It just sucks!!!

I am always posting on Twitter my opinions about taking opiates away from RESPONSIBLE people! What they don’t tell the public is that most people who over dose are using multiple drugs and the opiates are not prescription pills but heroine. More regulations are going to cause MORE overdoses. **
I compare it to Chicago that has some of the strictest gun laws yet has the HIGHEST murder rate! Regulations DO NOT WORK!

I would suggest writing every government person you can, I even write Trump, and look into the US Pain Foundation who is advocating for us.

Thank you for the email; I am 110% with you!

Take care,

Deborah

#13

Hello,
I’ve read this entire thread, Deborah4 and like so many here truly empathize. I also want to say to Mod support: kudos for a factual and helpful reply to Deborah4’s original post. This subject really resonates with me because it’s good to know I am not alone in worrying about what “ The Opiod Epidemics‘s” backlash will do to those suffering chronic pain and disabled by pain, injury or illness.
For those of us who have to battle our own bodies everyday just to achieve a minimum quality of life and function, opiates are a real and necessary part of life. Advocacy groups fighting for chronic pain sufferers need to get as loud as the politicians who use hot button topics like drug abuse and overdose deaths to run their campaigns on. Which means people like us need to get behind these groups, too. As a large and supportive forum of people helping people with fibromyalgia ( and other pain causing illnesses) we have more power together than we do apart.
At this moment, I have more time on my hands than usual because I’m Day 5 post op after a right shoulder surgery. I would love to brainstorm some ideas for how we can help effect policy so that changes in dispensing laws won’t cause sufferers who can’t be magically “fixed” by a shot, an injection, an(ugh!)antidepressant or a surgery are not the next group of unnecessary deaths- by suicide, or by being forced to do or take something unsafe, illicit, or illegally gotten- etc. Any docs and /lawyers on this forum?

#14

@Deborah4…I know how you feel and I have the same problems as you do, EXCEPT, I can’t get any doctor to give me pain meds at all!! I can’t even get a doctor to order an MRI for my back and I have not had one in 14 years now. I have chronic (lower) back pain, plus the Fibro, plus a Fatty Liver, Gout and a few other ailments I cannot think of right now (Thanks to my Fibro Fog!!). At my last primary care physician appointment, she told me she would refer me to a pain management doctor who does not prescribe opiates for pain. The appointment to my primary physician was in September and I have not heard anything about the pain management doctor and the Prior Approval I have to get from my primary care physician.

Of course I am not a happy camper over the PCP not getting a Prior Approval!! But I will say this, if I have to call this doctor to ask why I haven’t received a Prior Approval, I will not be nice about it. No way, no how. Some people say I have a really bad temper and I say things that cut like a knife, so I try to keep it reined in if at all possible. But I do have my limits. This PCP is new and the September appointment was my first visit. She seemed to be in a hurry, perhaps since she was running behind. She will regret not spending more time with me at my next appointment.

I live in constant pain myself and can’t sleep in my bed anymore from the pain. I sleep in my recliner and have been for a long time now. Before I started sleeping in the recliner, I had to wake myself up (in the bed) to turn over because of the pain. Some days I feel like a walking zombie. This morning I fell on my back porch and luckily, I didn’t have far to fall and not enough space to be all sprawled out either. But I digress…

Sorry to keep rattling on, but I hope things will change for those of us who really need the meds to help with the pain.

#15

I also have many co dig ions that cause pain. The Opiod equivalents don’t work for me at all. 8 found that you needed a hand written Rx with no refills. So I have been trying Gabapentin and muscle relaxers foe my leg and hip pain. I had a spinal steroid injection this morning and I am hoping it works. The doctor told me someone would call on Monday to schedule my next one. So I really wonder if it will work. I cannot sleep either. There is no position that is comfortable. Today at the surgery center I couldn’t even lie on the bed without excrutiating pain. It is terrible when you cannot lie down, stand up or sit without terrible pain. I take Prolia for my Osteoperoais and antinflammatories foe my arthritis. QI am also diabetic. My GP wants to put me on Prednosone.

#16

I agree the system is not treating those of us with fibro pain fairly.
Concerning medical marijuana. There are two parts to it, the is the part that makes you high and cons is the part that treats pain. Cbd oil didn’t work for me, but you may want to look at cbd in marijuana.
For sleep I’ve found that taking otc diphenhydramine helps me a lot. I take 1/2 capsule and can sleep 8 hours.
I know what you’re going through, I’ve had fibro pain since 1988. Good luck and keep pushing the system to do right by you and us.