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.

@jimhd

@rwinney

We found a good financial advisor who takes care of finding the best secondary. He's been a big help. Our secondary medical insurance is with IAC (Individual Assurance Corp.), and prescription is with Humana. I like the 90 day mail order pharmacy at Humana. Of course a couple of meds are controlled substances so they can't do more than 30 days on them. But they mail out prescriptions a week ahead of the refill date so we don't run out of anything.

Jim

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@jimhd As I approached Medicare age, I went to an ombudsman in the Area Agency on Aging in the county where I was living. My situation was a bit different, as I knew I was moving the same month as turning 65, to another county. We researched based on new county, and was advised to consider a secondary coverage that would allow me to choose my own drs. Coming from an HMO coverage, I went to a PPO plan with United Healthcare, as offered through AARP, and have been very happy with them. Dues to health issues I went with a Plan F, and am so glad I did, as my health has declined. I went with Humana for my prescription plan, and again have been very pleased. ** I am not employed by either of them, and receive no compensation from them for telling you this. Do your homework, make informed decisions. When I moved to another state two months ago, I was able to bring all my coverage with me.
Ginger

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@gingerw

@jimhd As I approached Medicare age, I went to an ombudsman in the Area Agency on Aging in the county where I was living. My situation was a bit different, as I knew I was moving the same month as turning 65, to another county. We researched based on new county, and was advised to consider a secondary coverage that would allow me to choose my own drs. Coming from an HMO coverage, I went to a PPO plan with United Healthcare, as offered through AARP, and have been very happy with them. Dues to health issues I went with a Plan F, and am so glad I did, as my health has declined. I went with Humana for my prescription plan, and again have been very pleased. ** I am not employed by either of them, and receive no compensation from them for telling you this. Do your homework, make informed decisions. When I moved to another state two months ago, I was able to bring all my coverage with me.
Ginger

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Ginger
I appreciate this input as well. Can never have enough knowledge. Thanks!
Rachel

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@rwinney

Hmm…that is bizarre. I'm not crazy about fluctuating monthly costs. I will continue on with my research. Thank you for the advice. Very helpful.
Rachel

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Unfortunately I don't think there is any way to avoid the fluctuation in Part D Medicare co-pays – call your congressmen and senators, join AARP (they provide forms, online petitions, etc. to make it easy to let your legislators know your feelings). What you can avoid with a Medicare Advantage plan is only a separate Part D premium, not how Part D works. If you've ever heard reference made to the "donut hole" – that's what they are talking about!

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@donfeld

Thank you Lori as I know you feel the pain that we all go through. You Are Not Alone, but the problem is is that the right people aren't listening and therefore we have to fend for ourselves. Don't listen to the all the doctors have to say because they're limited and they're worried about liability. We aren't and therefore we can do what the hell we want to to save our life and our emotions along with our pain. Love you and don't forget that. Don

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Awww, thanks again, Don. You absolutely made my day. Hang in there, buddy. I am full of CBD drops as we speak, so I am a little punchy, but the damn feet don't hurt, so all is good. God bless your kind words. Lori Renee

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This discussion of insurance is interesting … I'm trying to understand it. We have Medicare and Humana with parts: B, C, D. I fell into the 'donut hole' earlier this year – the pharmacist explained it. It's a tricky part of medicare that politicians (not humanitarians) dreamed up. It's supposed to save the government some money but I'm not sure that the government saves any money if we add up the enormous cost of record-keeping to save pennies. Peggy

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May I ask: How many drops of CBD do you do, and did you start with one drop and go up from there? It makes you 'punchy'? Like marijuana makes people high? I'm considering trying just one drop – scary for me – I had a bad reaction to pot when I tried it in college (in the 70's, statute of limitations is up). The pain in my feet is breaking through the lyrica and gabapentin and I'm at maximum doses of those; I don't want narcotics or anything that might make me sleepy, so, the pain doc and I are discussing the options. I'm okay with 1/2 of a Tramadol, nothing else I've tried works. Peggy

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@pfbacon

May I ask: How many drops of CBD do you do, and did you start with one drop and go up from there? It makes you 'punchy'? Like marijuana makes people high? I'm considering trying just one drop – scary for me – I had a bad reaction to pot when I tried it in college (in the 70's, statute of limitations is up). The pain in my feet is breaking through the lyrica and gabapentin and I'm at maximum doses of those; I don't want narcotics or anything that might make me sleepy, so, the pain doc and I are discussing the options. I'm okay with 1/2 of a Tramadol, nothing else I've tried works. Peggy

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I think you should read a lot more on CBD a sure way off base. You don't get high from CBD and the benefits are outstanding. You should smoke marijuana it would also help you calm your nerves and sleep better as well as pain control. I've been doing it over 40 years and I'm suppressing of a large corporation. CNN has special on this just this past week and look it up. Take Tramadol/APAP

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@pfbacon

May I ask: How many drops of CBD do you do, and did you start with one drop and go up from there? It makes you 'punchy'? Like marijuana makes people high? I'm considering trying just one drop – scary for me – I had a bad reaction to pot when I tried it in college (in the 70's, statute of limitations is up). The pain in my feet is breaking through the lyrica and gabapentin and I'm at maximum doses of those; I don't want narcotics or anything that might make me sleepy, so, the pain doc and I are discussing the options. I'm okay with 1/2 of a Tramadol, nothing else I've tried works. Peggy

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@pfbacon

The CBD doesn't make you euphoric. It's the THC that gives the high. You can use it in food – there are websites that have tons of recipes. I made fudge with cannabutter. Melt the butter, grind the cannabis and let it simmer in the butter for a couple of hours, then use it in cooking and baking. I made batches of fudge with it but it tasted too much like weed. If I were to make butter again, I'd simmer it in a crock pot in the garage, so it doesn't smell up the house.

I've never tried the oil. I understand that it's pretty expensive, as is any medical marijuana. The dispensaries here in Oregon can sell it, but you can only get a very small amount per day, which isn't enough to do anything. If you have a green card from a doctor, you can get a lot more. The hemp market is being swamped here, with fields of it from 1 acre to thousands. Word was that a company is working toward setting up a processing facility in our town.

Others have written posts in this discussion that are from better informed than I.

Jim

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@1prettymess

It’s 9/29/19 as I read your post. I hope your still around cos I genuinely would like to know how your doing.

I’m literally on the verge of tears as I read your message. I suffered a broken back.

I was in a car wreck when I was 17 way back in 1977…
They did the thing where they used park of my hip bone to fuse and put Harrington rods in my back. From what I remember I think it was L5 location.

3 months after my surgery I told one of the surgeons my back was hurting and bless his heart he said Vicki I’m sorry darling your going to have some back pain the rest of your life.

I never dreamed I’d be where I am today 😞

Approximately 22-24 years ago my back just started to progressively get worse over a few month time period…from pretty darn bad to almost intolerable…I’ll never forget that day.

My husband came in and I was mopping the kitchen floor crying. I told him how bad I was hurting and he took me to an urgent care type of place.

I had went to my general practitioner a few months earlier and she diagnosed me without doing an X-ray with fibromyalgia.

Back then I had never heard of fibromyalgia. Not many people had.

The day I was mopping the dr at urgent care was flabbergasted when he saw the X-ray… the bolts ard screws were about 2-5 inches ABOVE the rods…and just kinda tossed about my back.

That started a series of doctors.

Some were stunned some acted like I was complaining to get pain meds.

ONE of the surgeons that worked on me that I went to see literally laughed at me and said I should not have pain because of the area where the rods were!

He was one of the first Drs I went to and he said to take Tylenol! LOL

Is It terrible I hope he suffers the same pain I do one day and they don’t relieve his pain either? 😞🤭😱

I hate to say that. For over 20 years I’ve never been so heinously nasty as i have been lately. I have pain and definitely emotional issues this past few months ranging from bad to worse.

In the past 20 years I’ve had on and off pain with some relief here and there.

Tonight is a bad night… I’ve not been able to sleep due to about a level 8 pain but I also have nausea which I read somewhere years ago because the rods can corrode over time and cause nausea.

Also when my pain gets really bad I get nauseous.

I was on the “ oh so dreadful “ Fentanyl patch for 14-15 years up until 4 months ago but due to the opioid crisis and because the patch kept peeling off of me (I’ve already tried everything trust me) but I also have this very mild all over body moist type of sweat that happens to me…plus I’ve lost about 150ish pounds in the past 3-4 years ( at one time I was almost 280ish pounds. I now weigh 116-120…so besides getting older and having that crepe skin…now I have lose skin from losing so much weight…the patches would literally just curl up around the edges and eventually fall off😞

Which meant when I put them back on they only relieved my pain about 20% as effectively as they did when they just stayed on like they should…

Thank God…they did work pretty well for 14-15 years.

And I was able to work from home 90% of the time… I was blessed.

Don’t get me wrong I had some miserable days thru the years but compared to the level of pain I was in when they put me on the fentanyl patch and where I am today? Oh heavens I could ride a race horse! 😇

But now I’m on the Belbuca patches. You put them in your jawl and let them dissolve.

I’ve never been below a level 6-7 pain in the past 4-5 months 😞

My pain management doctor of 13 years weaned me off the fentanyl. I was only on the 75 strength patch. Which helped me pretty well. But weaning off the patch to go on to Belbuca was hard…my pain level ranged from 4-8…but I lived.

I’ve just started to really research info about broken rods and chronic pain the past few months.

I’ve lied about my pain levels since I was literally 17 years old. I never wanted to aeem like a cry baby..

Like you… I didn’t want to stop working. I didn’t and DON’T want to be on a limited income.

I am still working.

A few years ago I started to have seizures when I was in withdrawals because the patches were coming off and yes…I’ll be honest I would put a new patch on earlier than I was supposed to. But I always did it thinking I could stretch the remaining patches out here and there.

You would just NEVER EVER know the sheer terror of sitting there looking at a new patch…and your in so much pain you feel nauseous, your light headed and your family is due to come over for dinner the next day and you want to make your homemade spaghetti and meatballs with lemon icebox pie.. sweet tea…and homemade chicken nuggets for the grandkids…BUT you can’t because your low back hurts from one side to the other…your neck and shoulders hurt so bad…it’s like you can literally feel the bones inside your body … I can FEEL the curves of my shoulders and the actual joints…and they just have this horrible achey feeling but I can’t say it’s a dull ache because they just hurt AND burn so bad even if I rub them that hurts too the touch…my low back hurts and burns BUT it’s like the muscles in and around the low back and hip bone area aches and burns SO terribly bad I think it’s causing me stress because my upper shoulder and neck also aches and burns.

I’m just trying to really give a good description of what my stupid body feels like at this very moment…

😞

I am SO sorry to say all this …now I’m even thinking about deleting this because I absolutely don’t want to take away your hope…
Cos for 40 plus years hope has kept me going…

When I had pain I would just tell myself one day they will be able to find something to fix me…

That was back in 1979 when I had to redo senior year because of back pain…

I’ve recently been tweeting about chronic pain patients…the fact that I didn’t get my Fentanyl from China I got mine from the local Pharmacy… I pointed out that I never failed a urine test patch count and I’ve been with the same pain management doctor for 13 years and same pharmacy for 12 years…

I post pics of my X-rays whenever and wherever I can…

I so wish this site allowed uploading pictures…

I just wonder how you are doing?

I think the ONLY thing worse than being a 58 year old woman with broken rods would be a young man like yourself with a wife and child that you WANT to support….

I really hate to admit this but I never thought about a man having this problem! 😞

I have felt horrible enough not being able to do my woman-ly chores for my family but to have a family and WANT to care and provide for them and the thought that I may not be able to?!?!

My gosh sweetheart… I hope you know I truly am sorry you have to go thru that…

I don’t even know what I am writing and tweeting for…
But someone has just GOT to help us…NOT just broken Harrington rod people BUT anyone with chronic pain.

I don’t know if I want them to just give us whatever type of medication that relieve our pain…whether its for a minute or a lifetime…

I mean they are worried about us being addicted and I always read the concerns that opioids give us a sense of euphoria?!?!

I mean really?!?!

Isn’t that what antidepressants do? And when you have pain so bad you dread taking a shower because your afraid you’ll get lightheaded and pass out…then your hair will clog the drain and you will drown…and your family will find you like that???

What the heck is wrong with a little euphoria?!?!

😱
When you have to go to bed in pain and wake up in pain…AND you wake up several times a night because when you roll a certain way it feels like you rolled a certain way and it felt like you rolled onto a grapefruit that was about 450degrees hot… and its stabbing pain in your hip area …then you look at the clock and you’ve only been asleep 45 minutes….

What do you do?

What?
I truly am open to suggestions…

Whether you have broken rods to or you have some other type of chronic pain and you’v developed some tactics to make it fhru another day….share on what you are doing and/or thinking to make it another day….

I know this…your post gave me the strength and stamina to keep tweeting and talking to anyone that will listen …that can and WILL help us…

Doctors government celebrates…i say celebs because there are no charities organizations for chronic pain issues….but maybe if Kim Kardashian speaks up for us…someone will do SOMETHING for us…

I don’t even know what could help us…more research on how to fix broken rods? Or just let us have strong pain medication until they can figure out how to remove these rods ?

I mean geez if I don’t have an idea who WILL?!?! 😱

I’m truly sorry for this long pathetic post…

I won’t even go into the several reasons I’v been up and down all night long… and started to research broken Harrington rods again 🤔😓⏰

But please share your experience good or bad…please if you have an idea or thought…SHARE it….

And to the young father and husband I’m replying to let us know how your doing….gosh I so hate what your going thru but your post gave me the boost I really needed to keep speaking out…

I have photos of my back X-ray on you tube and my name is change for a nickel if you care to see them.

High hopes for those of us suffering needlessly from this terrible experience
XOXO 😚

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@1prettymess

I feel I need to say something about opioids and antidepressants. They don't make a person"euphoric". I've been taking both for a long time, and I definitely have never experienced anything that is close to euphoria.

If a person who has chronic (also called clinical or major) depression is taking an antidepressant, the medication helps to level out the mood. Bipolar depression and bipolar disorder are another subject. Medication helps to make the mood swings that go from dark depression to a hyper, manic high, level out so the downs don't go as far down and the high doesn't get to a manic episode.

I've been taking a fairly low dose of morphine sulfate contin for several years now, specifically for the neuropathy pain, and it has helped take the edge off the pain. I stopped taking it yesterday because I started a new medication that seems to be helping a lot. My hope is that the Imipram will treat the pain enough so I can get off opioids. I've willingly taken it because it's the only medication that has treated my pain without unacceptable side effects.

Just wanted to add my two cents worth.

Jim

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Pain. I'm in so much pain I am ready to give up. Stinging in my finger is so bad it brings me to tears. It radiates to my other fingers and now also into my hand. Been dealing with it for years. Every doctor has done or said not one thing helpful. My husband got me a tiny shocker deviselike $$25.00. Last week we got CBD oil (no help) $$35.00 too late. I have wrapped it. I get massages (free) but possibly more damaging from my husband. My quality of life hmmm

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@lisash I'm so sorry to hear you are in such pain! Have you sought out an area hospital's Pain Center/Pain Clinic? I got 0 help for excruciating back pain from my PCP but choosing to see an anesthesiologist affiliated with a large teaching hospital made all the difference.

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@pfbacon

May I ask: How many drops of CBD do you do, and did you start with one drop and go up from there? It makes you 'punchy'? Like marijuana makes people high? I'm considering trying just one drop – scary for me – I had a bad reaction to pot when I tried it in college (in the 70's, statute of limitations is up). The pain in my feet is breaking through the lyrica and gabapentin and I'm at maximum doses of those; I don't want narcotics or anything that might make me sleepy, so, the pain doc and I are discussing the options. I'm okay with 1/2 of a Tramadol, nothing else I've tried works. Peggy

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@pfbacon CBD drops are an utter life saver for my severe foot neuropathy. Gabapentin, very high dose, did nothing to help. I take a dropper full of CBD oil and hold it under my tongue for about 30 seconds. Utterly fantastic stuff. Also, the best, a CBD salve on my feet. Amazing stuff, but only lasts an hour or so, so I need to reapply. If you want the names of the companies I buy from, let me know. I buy right on line, from two different companies. The one that makes the drops is third party tested, and the company has won awards. The oil I buy only contains .03% or less THC, so you absolutely do not get high. Let me know if you want info. Good luck, Lori Renee

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